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.
October8th- (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.