What IS Men2a? Medullary Cancer? Pheochromocytomas? Hyperparathyroidism?

*I previously posted this in December 2004 but with all the people who still visit this site on their search for MEN2a, I felt it was important to post again WITH corrections because we all know I've learned alot more about this in two years. ) As always, thank you for reading and please remember that I have had two surgeries since this for the pheos and medullary cancer.*

I figured that I would post some information about MEN2a and the things that come with it as well as links for anyone who is interested to read.

"Multiple Endocrine Neoplasia II (MEN II) is a hereditary disorder in which patients develop a type of thyroid cancer accompanied by recurring cancer of the adrenal glands. One type of this disease (MEN IIa) is also associated with overgrowth (hyperplasia) of the parathyroid gland. The cause of MEN II is genetic -- a mutation in a gene called RET. Multiple tumors may appear in the same person, but not necessarily at the same time. The adrenal tumor is a pheochromocytoma and the thyroid tumor is a medullary carcinoma of the thyroid. The disorder may occur at any age, and affects men and women equally. The main risk factor is a family history of MEN II." Excerpt from AllRefer.com- MEN2a.

Basically all that means is that I inherited a mutation in the RET gene (codon C634R) that causes medullary thyroid cancer, pheochromocytomas, and in my case hyperparathyroidism too. Ninty seven percent of people with MEN2a develop medullary thyroid cancer, 50% develop pheos, and 20% develop parathyroid problems. Lucky me got all three. WHO I got this from I don't know. My mother and I are not on speaking terms so she won't tell me the results of her testing and she has denied me my birth father's true name my whole life. So I get to be considered the first in my family history from here on out to have this. We believe it came from my father's side though because I have 6 aunts and uncles and there was never word of this before now. It's hard not knowing for sure though and had my mother been a little less selfish I might not be as far advanced in my cancer as I am now. :(

Symptoms of MEN2 can include severe headache/migraine, heart palpitations, rapid heart rate, profuse sweating, chest pain/angina, abdominal pain, nervousness, irritability, loss of weight, diarrhea, cough, cough with blood, fatigue, back pain, increased urine output, increased thirst, loss of appetite, nausea, muscular weakness, depression, and personality changes.

I've had problems with some of these things over the years but I feel that I am one of the lucky ones. I am not in alot of pain and have only dealt with some things here and there over the years whereas some people have felt poorly and this has completely changed their daily life. For awhile I just thought I was a lazy person and just a weinie to be honest because all these little things would go on. I'm also a very stubborn person though so I have always just gone on and not complained about any of it.

There is no "cure" for this unfortunately although there is hope for one in the future. I am keeping my fingers crossed because my two oldest children have tested positive for MEN2a as well. Only my youngest son tested negative. Had I known about this when I was younger then I could have had a thyroidectomy and been saved from ever having the medullary cancer. We would have known to watch for the pheos and my bones and teeth could have been spared from the hyperparathyroidism. All of this could have been so simple yet someone's selfishness has made it so complex. Of course, I never would have had my children either sooooooo...

Since we've found this fairly early in my children they will have the thyroid surgery and hopefully be cured of the medullary cancer. We will unfortunately always have to watch for the pheos and they have a 1 in 5 chance of developing the hyperparathyroidism. At least they will never have to have my life and go through all I'm about to. For that I am very thankful.

What is Medullary Thyroid Cancer? There are four different kinds of thyroid cancer- papillary, follicular, medullary, and anaplastic. There is also recurring thyroid cancer as well. The first two are the ones most people get and can be treated and possibly cured with radiation therapy and chemotherapy. Anaplastic is a very fast moving and very deadly cancer. It's the one you just don't want to get. Recurring I honestly know nothing about and I apologize for that.

Medullary cancer is thankfully slow moving but it can not be cured by radiation therapy or chemo. In fact, neither one of those really does much of anything for my kind of cancer. People say to me "Well at least you won't have to go through chemo" and I am thankful for that BUT what they don't get is that I will also never know what it's like to be cured or in remission. You might think not having to endure chemo is a great thing but for someone who wishes for a cure and hope, it's not.

Anyway- this cancer is malignant and goes through C cells and calcitonin. Here is a link to help - Medullary Thyroid Info. As you can see there, around 700 cases are diagnosed per year in the US of MTC. They give people like me who it has spread in and who have tumors over 1cm less than a 15% chance of survival after 5 years. Does that bother me? Some of course, but I know of people who have had it worse than me for 20 years so I say "Pppppfffffffftttttt" to their 15%. ;)

What are Pheochromocytomas? Pheos are adrenal tumors that are usually bilateral in MEN patients. Only 10% of the time are they malignant so the cure for them is to have an adrenalectomy. Some people only get one gland out and the tumors never come back. Others battle them constantly until both glands are removed. I have a tumor on each gland and will have to get both glands removed. My children thus far have tested negative for pheos but we will always have to watch and wait.

The most common symptom of pheos is high blood pressure. Other symptoms can be found here along with more information Symptoms of Pheochromocytoma. All three of us have normal blood pressure which in my case the doctors find interesting. With my pheos as big as they are I guess I should be suffering from hypertension but I have always had normal to low BP... thankfully.

What is Hyperparathyroidism? "Hyperparathyroidism is excessive production of parathyroid hormone by the parathyroid glands." Excerpt from AllRefer-Hyperparathyroidism. As you can read at that link some of the symptoms are a royal pain in the butt. For me the itching, "bone" pain, ulcers, just over all achiness, and fatigue get to me. The fact that this has sucked most of the calcium from my teeth upsets me because my teeth are horrible and in a bad state of decay that no dentist could have ever saved me from. I've also had more kidney and UTI infections than I can count and blockages to my right kidney as well. The hypercalcemia that results from it has caused a slight curve in my spine (scholiosis), memory loss, bone and muscular pains, and flank pain as well. I think I hate the hypercalcemia more than anything.

Hopefully what I've posted and the links help you understand this more. You can also Google for MEN2a, pheos, or any of the other stuff to get more information. Thank you for reading.

Odd Bloodwork Results and Vomiting Kiddo

Well yesterday the endocrinologist called me with some peculiar results. My intact PTH came back "fine" he said. He said that it was nowhere near 1097. He also said that my calcium was actually low, calcitonin seemed about the same, and that the labs Valdosta used must have been wrong. Well to be honest, I would think since the levels were 515 in July and 1097 in October it is hard for me to believe that Quest was the lab that was wrong. I'm going to have the new general doctor redo the tests so I can get a second set. If they confirm Dr. G's results then we'll know it was a Quest Labs fluke and I've never been hyperparathyroid since the surgery. If they are different then we'll know the first tests here were wrong and they need to go back to planning on taking this thing out of my arm. As it is now Dr G has cancelled the parathyroid scan.

The CT scan has been scheduled for December 2nd at 8:30am so hopefully this will get things going on that.

Sis and I went to have our bloodwork done for the general doc yesterday and the poor kid ended up vomiting. I think it was a combination of the fasting, nerves, and it was warm in the lab. She kept apologizing and I kept telling her there was nothing to be sorry for. It's not like the poor thing could help it. She was okay after a few minutes and from now on they will have her lie down when she has blood drawn.

So now we wait for those results to come back and meanwhile the pain in my arms and legs is getting worse for some reason. The last two nights I haven't been able to sleep because it has hurt so bad. I'm trying to hold out for the bloodwork to get back but I may have to go back to Dr. M (the new general doctor) and have him check things out again. I'm also having horrible pain in my right flank that leaves me wondering if I'm getting another kidney blockage. It hurts to sit, stand, bend..... it just constantly feels like I have a backache AND someone is shoving the heel of their foot in my right kidney. Fun times!

*Update* Our bloodwork came back. Sis's TSH levels were at 15.27 (normal is 0.6-6.3) so she is elevated over double the normal. Odd because that would usually mean she would gain weight not lose it. So she is now on 112mcg of Levothroid and hopefully that will fix things for her.

My bloodwork all came back fine (can you imagine?? LOL) so I am now being referred to a neurologist and we will see what he says. If he can't find anything then I don't know what to do anymore. My pain is getting worse in my extremities and I'm afraid that if the neurologist can't find anything then no one will listen. So if you're reading this Dr M- please don't quit on me and please help me find the cause of my pain. It's real and it hurts and all I want is to feel semi-normal again.

I don't know where we stand on the degenerative disc thing but maybe that will be looked into more if nothing turns up with the neurologist.

So that's it for now. More to come after the CT scan because you KNOW how wonderfully I do with those. *eyeroll*

Note To Self: MEN2a + Long Move = VERY Sick Me.

That pretty much covers it doesn't it? I always thought long moves were hard before but this was my first one since diagnosis and surgeries. I think I want my adrenal glands back thank you very much. ;) WOW, talk about feeling wiped out! It took me a full week to recover and even know I spend most days with a migraine.

Before we moved I had Dr. L order labs for me so I would have fresh results to bring to the new doctors here. I wanted something current to go off of and wasn't sure how long it would take to get things rolling here with a whole new support system. Well, I received both good and bad news.

The good news was that my calcitonin levels are currently at 17. Yes that's a ONE and a SEVEN! I couldn't believe it! As sick as I've been the last few months I honestly expected it to have started climbing again. So what that means is that if it will just stay at 17 and not go any higher then there is that very slim chance that I could be cured of the medullary cancer. It's not something I'm getting my hopes up over but it's a nice surprise that I am enjoying right now. Also, my thyroid levels are stable and doing well.

The bad news was that my parathyroid levels (intact PTH) were very high. I went from the 515 to 1035 since July. This of course means something is VERY wrong. I probably should have run back down to Tampa and had it taken out but I can't help but feel like that would be a bad idea. The bottom line is that they screwed up BIG TIME! They put an supposed adenoma (and I say supposed because I'm wondering if they even tested it) in my forearm. Just let me say- an adenoma is a benign TUMOR okay? So they took out two bad parathyroid, left one good one in, and the proceeded to chop up this TUMOR and stick it back in my arm. Adenomas are usually the primary cause of primary hyperparathyroidism. So all they did is take the culprit out of my neck and give it new housing in my arm. WHAT KIND OF IDIOT DOES SOMETHING LIKE THIS??? Ugh!

So anyway- things are getting worse and I can't help but wonder if they stuck parathyroid cancer in my arm. I am going to have the doctors here take it out of my arm hopefully VERY soon then what will happen is one of two things. One- it will just test as an adenoma, it will be out, and my levels will drop. Two- they will take it out and test it and it will be cancer which will mean I will need chemo and rad therapy. It will also mean I will be suing because that would just be beyond disgusting. I'm not a sue happy person by the way I just don't think others should have to suffer from something like this again.

Tomorrow I have an appointment with the new endocrinologists. I had an appt set up with one I had emailed with but he is not on our new insurance so I hope beyond hope that this other practice knows what they are doing. If not of course I have the option here of looking for someone else. I promise to post afterwards and tell how that goes. The kids also have an appt next month with a ped endo BUT she isn't on the insurance so I have to start over. *sigh*

I also just want to thank "W" from Australia for posting a comment on my last post and letting me know that people are reading. It honestly means so much and I will try harder to keep this updated.

Update From My Endo Appointment

Well first of all, the results of the kids' bloodwork came back last week. The results were pretty good overall. Both of them came back with good calcium levels which is very good and means Big B is hopefully finally doing well with his hypoparathyroidism. Both of their thyroid panel results came back showing them hypothyroid though so we had to raise Sis up to 88mcg of Synthroid and Big B up to 125mcg of Synthroid which by the way is what I'M taking! They were only slightly on the low side with the thyroid levels though so we will redo their bloodwork in about 4 weeks and see how they are doing again.

Last Thursday I found out that I only have one optic nerve in each eye. LOL. After what I had heard about some people with MEN2a having extra optic nerves I had wondered but nope that is at least one thing I am normal on. :) I did however need glasses and got to pick those up yesterday. I can't see worth a darn but the doctor says that is most likely because my eyes spent so long trying to compensate for my bad eyesight that now they are fighting the corrective lenses. So we'll give it some time and go from there. I'm sure I will adjust though.

On Tuesday I went to my appointment with Dr L. It was odd because I was in the room that she first told me the results of my biopsy in. As I sat there waiting for her I just kind of reflected on all that's gone on the last 9 1/2 months. Man, you never realize what a roller coaster ride it's been until you sit and think about it all. I will honestly say it brought tears to my eyes reliving the day she said the words "Your biopsy results came back abnormal for being abnormal" in my head. It's true what they say about your life changing in an instant.

Anyway- she noticed that I've gained weight and said that it is most likely the high dosage of Dexamethasone they had me on after the surgery. She also told me that it's not likely I will lose the weight which honestly almost sent me into a state of instant depression so deep I would have needed some REALLY REALLY good drugs to get back. :( I have gone from weighing 157lbs last September (which looked nice on my 6' tall frame) to now weighing 180lbs and 13lbs of that was gained in between June 2nd and June 11th.

I feel like everything has been taken from me and I know I shouldn't feel that way because I'm still alive, my children are still alive, and things could be so much worse but I can't help but feel cheated and angry. It's just the human side of me I suppose. I will never be considered pretty again as it is thanks to the scar on my neck and the scars on my stomach but now I have to live in this heavy body that isn't me. I feel like I'm trapped inside a bubble and I can't get out. I may end up needing those anti-depressants after all if this weight isn't going anywhere. Isn't it sad that I made it through cancer and everything else but may end up with depression over weight?

Back on track- so she went over the weight thing, we discussed my lab results, she told me that I can exercise just like anyone else and all I have to do is stay out of the heat, and she said I might want to cut back on carbs and up my proteins to help with the weight thing. She also gave me a sheet of paper to give the Emergency Room in case I ever have to go in again with adrenal crisis. It's to help insure we don't have problems like we did the last time. Supposedly all I have to do is give them that piece of paper and they will treat my adrenal insufficiency like they are suppose to. Here's hoping anyway eh?

I told her about the fiasco with the ped endo in Lake City and she said keeping track of the kids until we hopefully move in January shouldn't be a problem. I was so thankful and so relieved that she agreed. She's not a ped endo and doesn't have to do any of this so it's really wonderful of her to be willing to. No more searching for creepy endos for the kids. YAY!!

Now on to some of my lab results. My calcitonin levels pre-surgery were 16,660 (give or take) and as of my last blood draw my levels were 36. This is VERY good. We're hoping it drops more of course but as long as it doesn't start going back up again then we can hold out hope. My calcium level has stayed between 9.0 - 9.6 which is normal and good. It means my parathyroid is working fine as far as that goes. My thyroid panel came back as slightly hyPERthyroid so Dr L dropped my Synthroid from 125 to 112 which means my 14yo son is on a higher dose than I am. I don't get that but okay.

And now for the one bad result- my intact PTH which measures the parathyroid hormone in your system. Pre-surgery this level was around 92 which was elevated but not a HUGE deal. Now it is at 515 which is VERY bad. The doctors in Tampa seem to be scrambling and trying to backpeddle now. They are basically hoping that by removing the adenoma they put into my right forearm my PTH levels will go down to normal. If not then it means they screwed up and we may be looking at parathyroid cancer.

Keep your fingers crossed for me that removing this stupid thing in my arm fixes things because parathyroid cancer means chemo and rad therapy. Not something I'm looking forward to and it would really suck to make it through the other cancers just to end up at this same crossroad anyway.

I was suppose to go down to Tampa on Monday (July 25th) but they decided to schedule the procedure at 4pm which would put us getting back home around 11pm at night. That is just too hard on everyone so I cancelled and will be emailing Dr BC this weekend to see what kind of doctor I need to look for here to remove it and also what doctor I need to see around here for the tumor still left in my intestine. At this point I'm guessing they think it is benign so no reason for me to go back down there to that craphole again.

So that's it- those are the test results, we'll hopefully find someone to get this thing out of my arm, we'll move on to the tumor in my intestine, Synthroid level was dropped, the kids have blood draws in 4 weeks, I have a blood draw in 6 weeks, and we don't have to see her again until December.

Catching You Up To Now

I figured I would just skip the play by play and just catch you up to the here and now so here it is. I had bloodwork done a few weeks ago but I guess the results didn't make the doctors happy so I had to go back and have it repeated the other day. It will be about a week before we get those results back and then we will go from there. I would love to tell you what some of the results of the first set of tests were because some of them were VERY encouraging but I'll wait until we get these second results instead. I just don't want to get mine or anyone else's hopes up.

Over the past month I have been in ALOT of pain that seems to just get worse with time. Right after the surgery everything in my neck was numb so I didn't feel much. As the nerves have reconnected I've began getting shooting pains and feeling like I had fire in my veins. I've also still had some numbness and my right arm likes to go numb on me. I've tried every pain killer I have (which is quite a few at this point) and none of them have even taken the edge off much less stopped the pain.

I informed Dr. BC of this over a week ago and his answer was that most of his patients feel better not worse and he doesn't know what could be causing this. That was followed by oh it is probably the fact that my calcium dropped from 10.5 to 8.5. That MUST be it. In other words, he doesn't know and doesn't care to know. :(

Finally last week I complained yet again to them about the pain (I can't sleep or function normally) and Dr BC's office set me up with a pain specialist. I went to see him on Thursday morning and was given yet another pain killer to try. The doctor was very nice, very excited to get to meet a MEN2a patient (said he'd been waiting 15 years. LOL), and we talked about homeschooling.

He did a thorough exam and made lots of notes so I was happy with what he was doing. I have another appointment in three weeks and we will see if I've made any progress at that time. He says that all feeling should eventually come back and the pain should go away but in the meantime it's not fair for me to suffer so he will take care of me. That's nice to finally hear from a doctor.

No one has said anything about the fact that I gained 15lbs right after the surgery. It's starting to make me mad that it's not even something they feel is worth bothering with. I personally find that pretty important and plan on being a royal pain in the butt until someone says or does something about it!!

Next week is very busy for us. I finally found the kids a Pediatric Endocrinologist and they have an appointment on Monday, July 11th. His name is Dr Frederick Weber in Lake City, Florida and he has had MEN2a patients in the past. He said it's been a long time but hey, at least he's treated them before and that's better than what we usually get. I'm really hoping this works out because I hate looking for doctors for all of us all the time. Nobody gets how draining that is on me.

On Tuesday, July 12th the kids and I have bloodwork at the lab here. Both kids are getting full thyroid panels done so we can check an make sure they are on the right Synthroid dosage plus we will check their calcium levels to make sure they are doing alright. Sis has been stable the last few times we've checked so hopefully she stays that way. Big B was normal last time and I'm really hoping he is again this time. We're keeping our fingers crossed anyway. I'm getting full thyroid panels and I'm not sure what else since the other lab took blood on Friday. If I hear that my thyroid levels are normal I'm going to scream. I really am because I'm having so many symptoms of hypothyroidism it isn't even funny! I'm so tired of feeling like hell all the time.

The doctors also suspect that I am currently hypocalcemic because I have alot of facial and hand tingling. The pain specialist the other day also said he believes I'm hypocalcemic because of something with my reflexes. I don't remember what he said exactly but something about the way my reflexes responded told him that my calcium levels were low. I guess we'll see right?

Next month we all have a Dermatologist appointment on August 11th. Sis will be getting the spot on her scalp checked to make sure it is alopecia areata and that the hair is growing back alright, she'll be getting the spot on her back checked, and she'll have the keloids on her thyroid scar checked. Big B will be getting his keloids on his thyroid scar checked and that's honestly all he needs looked at right now.

I will be getting the works. LOL. I need to have my scars from both surgeries checked, ALL my moles on my body checked because they have all doubled in size since the first surgery, a skin condition I have checked, my acne checked, and some moles biopsied. Basically I'm a skin wreck. :) I figure if we're going to get looked at we might as well get it all done at once!

I'm also suppose to go back down to Tampa on July 25th to have them remove the whatever it is from my forearm but at this point I really don't want to. If I'm having this much trouble keeping my calcium levels up WITH it in how bad is it going to get when they take it out? So I'm not sure what I'll do at this point but I'm waiting until my test results come back before I make a decision.

I just hope the pain ends soon because it is staring to wear on me. It's so hard hurting nonstop. I can't lift things, or hold things, and if the children touch me wrong I almost burst into tears. I don't want to live my life like this. Hopefully once all the nerves in my neck and shoulder heal then I will be back to normal. If not... well I just don't want to think about that right now.

My neck surgery is scheduled for June 2nd...next week. We have to be there on May 31st because I have pre-op and an appointment with the head and neck surgeon that day in Tampa. I have two surgeons for this surgery. One will be the same one that did my adrenalectomy and he will do the thyroidectomy part of the surgery and then the head and neck surgeon will remove every single lymph node he can find in my neck, any cancerous cells, and scrape...yes SCRAPE everything in my throat to get rid of as much cancer as we can.

The surgery itself will take around 8 hours from start to finish and I found out how they will be cutting me. THAT is the hard part to swallow. They will be cutting me about a finger breadths length above my collarbone from one side of my neck to the other. It's the only choice. So no small little scar that you won't see for me. I guess it's better than the great big upside down "T" that they use to do.

I'll be honest... I'm sitting here in tears right now. I already feel so self conscious because of my height, flat chest, and recent weight gain. Now people will stare at me and this huge ugly scar on my neck. Lucky me has a major problem with keloids too so it won't get better over time. It will ALWAYS be a big red ugly scar. I'm trying to tell myself that it's a small price to pay to be rid of this huge lump in my throat and this cancer from a part of my body but the woman in me can't help but be vain.

Dr BC said I won't be getting out of the hospital any earlier than Sunday. For the first two days I won't be able to lift my head at all and I will be on ALOT of pain meds. He said that the adrenalectomy was a cakewalk compared to this. That is NOT what I wanted to hear. At least he was honest though. He told me that it will feel like someone gave me razor burn on the inside of my throat because they will be scraping every vein, muscle, tendon,...well you get the drift. My arm will of course hurt because they are taking the only parathyroid they will save and reimplanting it into my forearm. I'm going to be all cut up and bruised up.

*sigh* No more modeling with Cindy Crawford for me. I'll have to just cancel that photo shoot in the Bahamas now. Sorry, just trying to make myself laugh. Not working, just had to blow my nose.

Anyway- after the surgery I will be on three meds on top of the two I'm already on. I will be on a Vitamin D pill called Rocalcitrol and calcium pills for about two months until the parathyroid in my forearm kicks in. I will be on the thyroid hormone replacement for the rest of my life obviously. So long term I will be on three meds (unless by some miracle that little piece of my adrenal gland kicks in instead of becoming cancerous AGAIN) and short term I will be on an extra two with calcium possibly being long term as well.

Vin and the kids are going down with me Tuesday and staying until my surgery on Thursday (thanks to Sis's very wonderful grandpa sending money to help out... I love that man he has helped me out sooooo much over the years) and then they will probably come home until Sunday when they will come back for me and I WILL be ready to go home on Sunday! Come hail or high water I'm going home on Sunday.

We'll stay at the same hotel we always stay at because with the cancer patient discount through Moffitt it's the cheapest you can find for a decent place plus part of their discount includes free breakfast coupons and that saves money as well. On Wednesday we will probably put the Aquarium pass Vin's mom bought us to use and also the museum pass as well that way we have something to do and again... it saves money.

I told Vin that once I'm in surgery on Thursday he needs to just take the kids to do stuff and check in later in the day. There is no sense in him and three kids hanging around a hospital waiting room for 8 hours. I won't even know they are there and it's not fair to the kids to have to deal with that. I'm sure going to miss them so much though once they head for home. I always miss Lil Man the most because he's the only one that still depends on me and I'm so use to cuddling with him at night. The oldest two are big enough to understand and talk to me on the phone and know I love them. I hate this crap so much.

After this surgery we will be going after the tumor in my small intestine. The lesions in my liver thus far have proven to be just excessive tissue (fibrosis) so we don't have to touch the liver at all. YAY for that one! But we can't figure out what the small intestine one is so we will have to tackle that little bugger next. Think they will throw in a hysterectomy just for good measure when they go in after the tumor? *smirk* I think I've earned a two for one deal at this point.

That's all I can think of right now and if you read all that then thank you. I appreciate everyone who reads my posts, wears our bracelets, and checks this blog. It means the world to me.

And just so you know... I will be taking my wonderful quilt that some of you lovely ladies made for me and holding onto it for dear life after the surgery. *kiss*

Jo's Chat With The Endo

So I didn't really have an appointment with my endo but she discussed some stuff with me. I told her the Cortef is working great and I am feeling ALOT better to which she was glad and said we'd just keep me on that. I told her I'm taking 25mg instead of 30mg and hope to work my way lower for obvious reasons. She told me just to let her know before I do it so we can make sure I'm not running any risk of adrenal crisis. Then we talked about the fact that my pain has gotten worse and I told her that I found out from other medullary patients that sometimes even a few years before bone mets show up they had the same kind of pain.

I also told her that Dr. BC seems to think it's because of the hyperparathyroidism and as soon as that is taken care of it will be all gone. Dr. L just rolled her eyes with me because we both know that my calcium levels are fine and so is everything else so there is no reason why the hyperparathyroidism would be causing me pain. I think we both have come to the conclusion that he's not the surgeon for me. *sigh* Anyway- she changed my pain meds to Neurontin once a day at bedtime in hopes that would help me. We're also going to do a bone scan to see if we can see anything as far as tumors go on the bones yet. We're hoping not but better safe than sorry.

After that I told her that the other surgeon in Tampa wants me to get a CT scan of my throat even though I already had one in October so I told her just to add the abdominal scan we were going to do as well. So we'll do that one to make sure that I don't have an abcess or internal bleeding around my liver and kidneys. If it comes back negative for both of those then we will know that it's scar tissue and just make sure I have good pain meds until it finally gets better.

The CT scan WITH Barium shakes and IV contrast will be on Friday at 8:45am and the Bone Scan will be on Monday, the 24th at 9:30am. I'm so nervous about the CT scan after how horrible the last one went. Supposedly the last one was so bad because of the pheos but that doesn't make the anxiety any less. As for the bone scan, I've never had one so I don't even know what to expect with that.

We also took some blood to run some tests. Basic tests are things like TSH since we haven't done one since September, PTH, and so on. The not basic would be the blood tests for rheumatoid arthritis. We're just checking because of the pain I have but if they come back positive then I will have to add yet ANOTHER doctor to my entourage and start seeing them as well as being on even MORE meds. NOT my idea of fun!

Sad thing is I don't know whether to hope it's rheumatoid arthritis or bone mets causing the pain. Either one sucks and no matter what I lose you know? Damned if I do and damned if I don't! LOL.

So now we just wait and see what happens. I will follow up with her after my surgery and go from there as far as my regular stuff goes.

Oh and did I mention I might talk to another surgeon because I'm not feeling comfortable with Dr. BC? If not...yeah I am. He still hasn't answered my email with my surgery questions in it and I'm not in the mood to be part of some "berry picking" experiment on his part. I'm actually calling the other surgeon tomorrow and seeing when I can get in to see him. I've got nothing to lose at this point and everything to gain so it can't hurt.

THIS has me a wreck this afternoon...

"The second operation which is associated with postoperative hypoparathyroidism is total thyroidectomy. This operation is performed for a number of reasons, but because of the close relationship that the thyroid and parathyroid have to one another (including sharing the same blood supply) the parathyroid glands can be injured or removed. This is very rare and occurs in much less than 1% of thyroid operations. "

BOTH of my children are in that 1%. BOTH of my children have low calcium levels meaning that their perfectly NORMAL working parathyroids before this surgery that didn't have ANY disease during the surgery that were REMOVED FOR NO REASON WHATSOEVER during their surgeries (one left in Big B and two left in Sis) were doing just fine and NOW? NOW? My kids have to be on calcium supplements and NOW we have to worry about them being on lifelong supplements if things don't look better in 5 weeks.

1%.... wtf? What are the odds? I mean really? What did I do to piss off some higher ups THAT much? I'm so sick of me and my kids being rare this and rare that. RARE genetic disorder. RARE thyroid cancer. RARE to have all three cancers. RARE 1% chance of this. RARE problems from that.

I want my life back. I want the kicks in the stomach to stop. I want to come here and NOT wonder whether or not I should post the newest screwed up crap because it all just sounds so unreal and screwed up even to me. I want to just come here and post "Hey today we had a normal test result/day and did nothing. That was the highlight of my day". Seriously, I do.

Yesterday the kids' pathology results came back- BOTH of them had medullary cancer. It was THANKFULLY contained to their thyroid and hadn't spread to the lymph nodes so we got it all. I still break down in tears when I think about how close we came. So damn close. I don't know how mamas whose children have full blown cancer do it. I'm just not that strong and they amaze me.

Then we went to the endocrinologist and had all three of us checked out. She read me the pathology on the kids and come to find out they took two of Sis's parathyroid (everyone has four sometimes even five) and THREE of Big B's. NOBODY TOLD ME THIS!!! After their surgeries the surgeon told me that they didn't have to touch the kids' parathyroid and left them alone!!! HE LIED TO ME!!!

If they only left one in Big B then they should have moved it to his forearm that way if anything happens he won't have to have his neck cut again. Instead they have set him up for future neck surgeries.

Today I got the results of their lab tests from yesterday back (I sooooooo need to have them use the lab in town more often! I've never gotten results that fast before!) and BOTH kids are low on calcium and need more supplements.

Oh and just for extra kicks..... I'm developing Cushing's Syndrome and have to have a CT scan on Monday to check for internal bleeding or excessive scar tissue on my kidneys from the adrenalectomy.

Finally Talked To Dr. BC About Results

I talked to the doctor earlier and the final word is that the liver biopsy DID come back negative meaning there are no medullary TUMORS in my liver. The Octreotide scan showed that the tumor in my small intestine isn't medullary either. So THAT is good news and I'm very happy with that.

He confirmed though that I have medullary cancer "seeds" throughout my body meaning this will be a lifelong battle. We will be testing me regularly and watching for WHEN new tumors form. Most likely places for them to form will be the lungs, liver, bones/spine, and brain.

My next surgery date is May 10th. I will travel to Tampa on May 9th for my pre-op and then start the operation on the 10th. What we will be doing this time is the total thyroidectomy (removing ALL of the thyroid and the tumors there), a selective neck dissection (meaning we will remove all lymph nodes that LOOK diseased as well as the ones directly around the thyroid) and could remove upwards of 70 lymph nodes, and also we will remove ALL of my parathyroid (here is a picture for you...). We will take one of the parathyroids that isn't diseased and reimplant it in my forearm. This is so that if it fails later they don't have to go back in my throat and do surgery again.

The funny thing though is that Dr BC said we will be doing SEVERAL neck surgeries on me to remove more lymph nodes in the future "as they become cancerous". So we're not doing "if" but "when". Most times they try to do only one surgery on your neck because the more they do the more risk there is to the patient. We don't have a choice though on this.

The sucky parts are that my 5 year anniversary is on May 6th and Mother's Day is on the 8th. LOL. These surgeries and scans seem to be sucking all the fun out of my year. At least this time I can be with my family on those days and hopefully have something nice (mentally) to take with me into the OR.

I'm okay with this. I figure that we thought the tumors were medullary already so I had already accepted that. So knowing that it has spread and will show up later is no surprise and I'm not worried about it. Shit happens and I had already accepted that it happened to me. This way I just have more time and that is a VERY good thing. I won't lie and say I'm not scared because medullary cancer is known for showing up as lung, brain, or bone mets mostly but I won't think of that right now.

So that's the next step. After that we will figure out what is going on with that tumor in my small intestine because Dr BC doesn't know WHAT it is. That's a little scary as well- not knowing what this other tumor is and if it's something to be worried about.

One day and surgery at a time. I guess that's the best we can do.

Cancer, Pheos, MEN2a...Oh My! (October 1st-14th Updates)

October 1st- the biopsy came back... abnormal. And not just abnormal but "abnormal for being abnormal". I had to have blood drawn today to test for a rare form of cancer (medullary thyroid cancer) and no matter what I have to have a complete thyroidectomy. They have to take all of it because even if I don't have this cancer the cells were so oddly abnormal that it is being treated like cancer no matter what. I have an appointment on Monday with the surgeon and will most likely have the surgery in the next week or two.

After that I will be on lifelong thyroid hormone replacement, tested every few months for thyroid levels, and also tested once or twice a year for cancerous cells. I'll have to stay overnight at least after the surgery but should be able to go home the next day if all my levels check out. Lil Man doesn't have to wean but he can't nurse for probably about three days. I don't know how we're going to do that one. We won't know also how bad it is until they go in and they may have to remove more once they are in there. Main worry is having to remove the parathyroid glands and then I would be on lifelong calcium as well. Other than that again we won't know until they actually get in there.

Oh and I have nodules forming on the right side of my thyroid as well and that is another reason they are wondering about cancer because the little buggers are just forming and growing...little rotters! I thought I was going in and going to hear that the biopsy came back normal and discuss removing these nodules. Instead I get told that I may have a rare form of cancer and even if I don't it doesn't matter because I'm going to be treated as if I do because something isn't right no matter what. Then I get told that they are removing my entire thyroid. I had to ask her twice what she meant thinking I heard her wrong. NOT a good day and not what I thought was going to happen.

October 04- Went to the appointment with the surgeon today. He spent all of 5 minutes checking me and had me swallow a few times. He said between feeling my throat and reading the pathology report that he recommends a total thyroidectomy too. We also found out something NEW as well. :( He said the pathologist’s report said that the nodules on the left had come back with abnormal cells in the biopsy but that the one in the middle (on the isthmus) “appeared to be cancerous”. This is a big difference from being told that the cells looked abnormal for being abnormal. He also said that the one in the middle of my throat may be a tumor (it was Hurthle or something I think but I can’t remember the name of it.) but they won’t know until they go in.

He thinks that this mass is pushing on the nerves in my throat and that is causing the hoarseness and headaches that I’ve been having as well as the coughing. The surgeon explained to me what would happen and everything which I already knew everything he talked about from my research online. LOL. That part was cool because I just looked at him and said “Yeah”, “okay”, “I know” and he just looked at me kind of funny until I told him I had already read about all of it so I was prepared. He also explained about how in some instances they might nick the nerves damaging the vocal cords which leaves you hoarse for awhile but most times it goes away after awhile. Also told me about what happens if they have to remove the parathyroid, which I already knew but if they remove them then I have to take calcium supplements for the rest of my life as well as the hormones.

So now I have to call him tomorrow to see when we can schedule the surgery but it’s looking like it may be next Thursday or Friday and if not then the week after that. He wants to wait for the results from the calcitonin test (the blood test I took for the Medullary thyroid carcinoma last week) and we should have those back hopefully by Friday so that’s why we are waiting an extra week instead of doing it this Friday. He said I should be able to go home the next night after the surgery. My neck should hurt and be hard to move for about 10 days but I should be fine to move around as usual after about four days if nothing goes wrong. I start the hormones the day after the surgery and will take them for the rest of my life. Ugh, I stink at taking meds so this is going to be a real chore for me.

I asked if he could do anything about me developing keloids (excessive scar tissue) and he said no. There is nothing he can do to prevent me from developing them so there goes my hopes of a small little scar that no one will see. It WILL get puffy and thick just like every other scar on my body and I hate that. :(

So again, no real good news. I’ll still have my voice though so I guess that’s a good thing. And I’ll still be alive no matter what for awhile if nothing else. ;) It could be a lot worse and I need to remember that even if this is the worst I’VE ever dealt with personally. I’m ready for the worst but hoping for the best.

October 5th- Just talked to the surgeon's office and my surgery is scheduled for 7:30am on October 21st. That's a little over two weeks away which is more time than I thought I had and that's nice. I will have to go in for a Pre-Op appointment the 18th or 19th (whenever they can schedule me in) to get everything ready and probably talk to the anesthesiologist. Now all that's left is the blood test results and those will hopefully be back by this Friday.

October 7th- The Dr called me and my test results came back positive meaning I have Medullary Thyroid Cancer... the rare form of thyroid cancer. My calcitonin levels came back at 16,500. When I asked what the normal was my doctor said 5 so I guess I am WAY over. Tomorrow I have to go have blood drawn for genetic testing to see if it is sporadic MTC or MEN I or MEN II. Each one is different. Then I have to have a CT scan on my throat, chest, and abdomen to see if it has spread further.

Again, not good news and not what I was hoping for. This has hit us pretty hard and I cried for about half an hour. Now I'm just numb but at least now I know why I've felt so poorly the last several months. We have so much to do over the next two weeks and so much to cover. Things will be very busy around here with ALOT of changes.

October 8th- (Calcitonin Test Follow Up w/Endo) Had an appointment with the endocrinologist today. She just wanted to go over the blood test results and explain them to me some more. She said we needed to have more blood drawn as I now need to have the genetic testing done to determine if it's linked to the medullary thyroid carcinoma I have. We are pretty sure we know which kind and what stage I am in but I'm not ready to share at this time. There's a good chance the kids will have to have testing as well and then we go on from there.

They took about 6 vials of blood so they will do the genetic testing, a CEA test, a pregnancy test (that one made me laugh. no way possible I am prego you know?), test for pheochromocytoma, redoing the calcitonin test because we have to, check my cancer markers, and about 4 or 5 other tests as well. All to determine different things about my cancer. My CT scan is scheduled for Monday afternoon and I get the iv accompaniment (?) with it which means they will put a dye in me to make the picture clearer. We will be checking my throat, chest, and abdomen for dark spots or signs of the cancer having spread. MAYBE sometime next week I will get some of the blood test results back but some could take longer because they are such rare tests.

This form of cancer is very rare. There are around 1000 or less diagnosis of medullary thyroid carcinoma each year so I'm told/have read. The disorder I most likely have is even more rare. With the other forms of thyroid cancer you basically get your thyroid out and you are okay if it hasn't spread. Afterwards you get radiation iodine therapy and if it's really bad you get chemotherapy.

This one though is different. If you get your thyroid out and it hasn't spread then your chances are good. Radiation iodine therapy isn't done for this one unless it has spread or progressed and even then it's just so you can say you tried. It really doesn't do much except maybe help to extend your life. Same with chemotherapy. Both are just a way to prolong your life for a little longer.And I will stop there because I really don't want to go into it anymore.

Calcitonin levels- 16,442.4
Normal calcitonin levels- 4.6 or less
Hope to see levels at after surgery- 0.0
Middle mass on isthmus is a tumor.
Vascular and approximately 4cm or so long.
Large mass on left is calcified and approximately 4cm or so.
Second mass on left is partially calcified and not sure of size.
Third mass on left unknown.
Small nodules currently forming on right side of thyroid.
Entire mass seems to be pressing on/forming around larynxeal nerve causing hoarseness, dizziness, headache, difficulty swallowing, and difficulty breathing.

Weight (according to their scales which included me with heavy clothing sometimes, mind you )-on September 21st- 160lbs
on September 23rd- 161lbs
on October 1st- 163lbs
on October 8th- 157lbs

October 12th- (CT Scan Was A Nightmare!) Yesterday we left the house at 3:30p and headed to the endo’s office where I had to drop off a sample. Got there and found out I had to give yet MORE blood. So they took another vial of blood and off we went to the hospital. Got to Outpatient Registration, told Vin and the kids I would call when I was done, and got registered. I was back sitting in Radiology by 4pm and my appointment was at 4:30 so I was good to go.

Sat there nervous as heck and 4:30 came and went, then 5:00 came and went, people were going back and coming out that had come in after me, and then finally 5:25 came and a guy who had come after me got called back. I was a nervous wreck at this point and had had enough!! I walked up to the desk and asked the lady just how much longer it was going to be, why were other people going ahead of me, and why had I been waiting an hour and a half?? She gave me a blank stare and called back to CT where I’m thinking they obviously forgot about me or lost my paperwork because all of a sudden I was told to go back there.

I get back there at 5:30p and sit there for 5 minutes when this nurse comes in and goes “So you’ve had both of your barium shakes right?” Ummmm huh?? I told her I was getting an IV accompaniment and nobody said anything about any shakes. She said “Dr L’s office didn’t have you pick up anything to drink before this?”. I told her know "no" and got “It figures, big surprise there”. UGH!!!

So she brings in this quartsize vanilla shake looking thing and tells me that I need to drink this one and then half an hour later I will have to drink another. This was the most horrible stuff, besides that stuff they give you for your glucose test when you’re pregnant, that I have EVER tasted. It was like liquid chalk with metallic dust mixed in. It was awful!! I gagged several times and had to chug it so I wouldn’t throw up. Right after finishing the first one I started feeling somewhat nauseated. At around 6:05p she gave me the second and I belted through that one as well trying not to throw up. Finally at 6:15p they called me into the CT scan room and informed me that I STILL had to get an IV accompaniment. I wanted to just cry right then and there I swear.

I laid down and the girl got the IV in telling me that she hoped it didn’t back up because my veins were really small. Then this machine that the IV was hooked up to started shooting this liquid into me (like injections over and over again) and I cried out because it burned and stung so bad I thought I was going to bawl. Good thing- it eased up after about 45 seconds. Bad thing- I had to go through this a total of four times. They passed me through this metal donut a bunch of times and then they were done.

Afterwards the girl took my IV out and said that she was glad because it looked like it didn’t back up at all. I looked at my hand and it was swollen and turning red and getting bigger. I said “Ummmmm, it IS swollen and it DID back up! Look at my other hand. I have NO meat on my hands, they are literally skin, bones, and veins. That one doesn’t look like this one at all!”. She said that it only looked like it was backed up a little and to put heat on it when I got home and then cold and it should go away. After that I got up and they said I could go.

I wasn’t feeling too good so I stopped by the bathroom on my way out to throw up and then called Vin on the cell phone. He wasn’t too happy because he had been trying to find me and nobody could give him any answers. I told him I didn’t feel well and to come get me. He picked me up, we grabbed dinner, and went home. On the way home my hand was even more swollen and looking badly bruised with this ugly purple and red color. Got home, had dinner, and I started feeling worse.

Within an hour I was throwing up, had upset stomach (the NICE way of putting it. Ewwwwww), dizzy, faint, nauseous, and just felt horrid. My hand was still swollen and hurt but the ugly color was going away. In between trips to the bathroom I put heat on my hand. Finally around 10pm I told Vinny that something was wrong and looked up CT scan+side effects on google. Found out I was possibly having an allergic reaction to either the barium or the iodine. LOVELY JUST FREAKING LOVELY!!!!

I called the doctor over an hour ago but she hasn’t called me back. I called her on Friday with questions and never got a call back. Called her yesterday with questions about the scan BEFORE I was going for it and she never called me back either. You would think she might call me back when I leave a message saying I think I’ve had an allergic reaction to the stuff from the scan. Today my hand isn’t as swollen but it still hurts. The ugly color is gone thankfully but the vein is bruised. You can see it about two inches up my hand. I’m still pretty nauseated but I don’t feel half as bad as I did last night. We’re going to have to figure something else out because I am NOT going through this reaction everytime they want to do a scan on me. No way no how! I should get the scan results back sometime today and I will post if I’m able to. One nightmare down…stars only know how many more to go. Ugh ugh ugh.

(later the same day) Doctor's office called me back at 2:25p and told me that Dr L wanted me to come be seen for my symptoms. I told them I'm only still having nausea and a little bit of a breathing problem that I had called to tell them what happened LAST NIGHT so that they could document it and not put me through that again! They called me in some stupid prescription for the nausea and breathing at Walgreen's but I'm not picking the stupid thing up. Give me a break! Ugh. I also asked if they had my CT scan results and the girl said "We'll see if we can track them down". This is so irritating! The girl that ran the scan last night said they should have them by early afternoon so I KNOW they are in that office!! I got my Pre-Op appointment finally and just need to go pick the paperwork for it up.

The Beginning...

I have decided to keep track of my doctor appointments, diagnosis, and so on here so that I have a "written" log of everything that happens. I don't even know where to start or HOW to start at this point. I hope to make this blog more uniform later on but would like to make sure I don't miss posting/saving anything in the meantime.


On September 2nd, 2004 I went to the Walk-In Clinic because my ulcer pain was very bad and I couldn't handle it anymore. I took Lil Man with me just to get him checked out for the stuffiness and runny nose...figured why not you know? So he got a prescription for congestion, no biggie and he was done. The physician's assistant prescribed me Tagamet for the ulcer, checked my neck, got a little weird on me, ordered an ultrasound of my throat for the next day, and told me to make an appointment for two weeks.

So he goes out, gets my prescription, comes back in, and tells me that we're going to get bloodwork for testing my thyroid levels. I reminded him to NOT forget to do a pregnancy test (breastfeeding can throw things off and freak you out when you know you shouldn't be). I go, get blood drawn, and leave.

Friday, September 3rd- I show up for my u/s and find out it is in another building. I tell them I found out that the Tagamet excretes into breastmilk, is not recommended on several medical sites as well as NOT recommended by the pharmacist who filled my prescription for breastfeeding mothers, and ask to find out if there is something else I can take. I also asked if they had my pregnancy test results as well. Doctor is out to lunch come back after my u/s.

I go over to have the ultrasound done and the girl is kind of being a weirdo. She starts looking at this thing in my throat and goes "WOW" and then a minute or two later "Oh my goodness!". I do a sideways glance trying to see but can't. Then a few minutes later I get "I can't believe nobody ever said anything about this before now!". I tell her that I had my thyroid levels checked 2 years ago, the doctor blew it off, so I figured it was nothing and did too. She then goes "How bad are the symptoms so far?". I looked at her and said "I don't know what it is YET!". To which she gives me a funny look and plays stupid on any questions I have.

That was bad enough but then I go back over to the doctor's office and find out that the doctor STILL is not back from lunch to please call later. I tell them I need to know about the Tagamet. I call later and THE DOCTOR HAS GONE HOME FOR THE DAY AND SO HAS HIS NURSE!!! No call no nothing!! I ask again for my test results and am told that no one in the office can give me that. So the girl says she will put the file on the doctor's desk so he calls me first thing Tuesday morning.

September 8th update- (I edited out a few things so I'm sorry if some of this doesn't make sense anymore) This morning the supervisor Wendy called me and asked me to tell her the story so I did. She said that she got my message last night around 9pm and she was upset for me. She said that she was so sorry that this happened and that this is not how their clinic is run or the impression they want to make upon people. She told me that she would find out the preg test results and have the Clinical Supervisor call me back... she promised I wouldn't be ignored again.

The CS, Stacy, called me a little bit later and told me that the pregnancy test was negative to which I almost sobbed "THANK YOU SO MUCH" and she giggled a little. Then she said that she also had my u/s results if I would like them. She told me that I have FOUR nodules on the right side of my right thyroid and that I now must see an endocrinologist for a biopsy. She said that the chance of cancer is really rare (which I honestly haven't been worried about that anyway). This town has one endocrinologist so I have an appointment with her on September 23rd. She will stick a small needle into my neck to do the biopsy and we go from there.

So many different things could happen so I will just wait until my appointment and go from there. Hopefully there's some small simple thing that is all I will need and the bigger more serious things won't even come up.

September 22nd update - They didn't do anything but feel my throat, say I would need to see someone else for the other symptoms I'm having, and schedule the biopsy for Friday. Very disappointing and frustrating to say the least.

September 24th update- I had my biopsy done. There are now 12 little needle holes in my throat. Quite lovely really. Goes nicely with the purple and blue bruise that is forming around them. Ugh.

Finally found a few things out- Two of the nodules are at least 4cm wide which is pretty big. One is one the middle of my thyroid gland and the other three are on the left of it not the right as the doctor's office told me. The one in the middle is very vascular meaning it has alot of blood flow to it. The doctor had never seen so much blood flowing to one of these things.

Basically it has taken on a life of it's own and instead of my body fighting it because it doesn't belong it has accepted it and treats it as if it belongs. The middle one is the largest one btw. One of the ones on the left is pretty solidly calcified meaning it's hard as a rock. There is no draining it or shrinking it. A second one is fast becoming the same way.

So this means a few things. One- the doctor is worried about cancer again so next Friday we will get the biopsy results. I'm not too worried about it though it's just a little scary. Two- I DEFINATELY have to have surgery done to remove the nodules. The problem is going to be that middle one and there is a good chance I could have some vocal damage. If it was on the left or right it wouldn't be such a big deal but because it is right in the middle it ups the chances for things being complicated. The fact that this nodule has blood vessels going to and feeding it ups them even more. I now have to start cutting back on Lil Man's nursing and try to wean him.

This more than anything breaks my heart. I will be talking to the doctor next Friday at my appointment and if it comes right down to it I will be putting off the surgery for an extra month or two. It's going to be bad enough that I will be gone for a night or two in the hospital after the surgery but I can't see traumatizing Lil Man suddenly. If I put it off for a month or so it will give us time to wean slowly and therefore not so hard on him.

She can't do anything right now for my breathing or swallowing/eating problems. There's just nothing that can ease the pain or pressure. If they had just been filled with fluid it would have been much easier but hey, then it wouldn't be ME and MY luck would it?

Oh and what caused this considering my thyroid levels are perfectly normal? No clue. She said genetically it's like cancer...a genetic mistake that happens and it grows, forms, and does all the things cancer does but without the life threatening disease thrown in (this is IF the nodules are benign). She says you either get these and they form cancer or you get these and they are benign but they both start and live the same way. Lovely thought isn't it? LOL.