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Papillary cancer, post surgery question

sarah0247
Posts: 3
Joined: Nov 2010

Hey all,

I'm sure this question has been asked about a million times but I will be redundant and ask it again. First, let me give you some history.

In October I went to get a physical. The doctor felt a lump in my thyroid, after an ultrasound and biopsy which was abnormal I had my total thyroid removed, which happened 3 weeks ago. I had a 1.7cm nodule which ended up being malignate papillary cancer. The doctor started me on a very very low dose (88 micrograms) of synthroid while I was in the hospital. I went this week to my post op appointment.

The doctor told me about the nodule (which is detailed above) and he also said he took out 6 lymph nodes which were all biopsied and none showed any cancer growth. The doctor then told me that I'm in a "gray area" regarding iodine treatment. He said that since the cancer seemed fairly self-contained I don't necessarily need iodine treatment, but some people would recommend it because there might be "microscopic growth" in other lymph nodes which would be too small to detect and iodine would take care of that. So he's sending me to another doctor to get a second opinion regarding iodine. I haven't been to the other doc yet because appointements are a few weeks out, at least.

I guess I'm asking about any insight regarding iodine treatment after I've told you what I've said above. Also, the doctor said he couldn't adjust my medication for at least another two weeks so I'm on this really, really low level of synthroid and I feel, energy wise, like I'm circling the drain and depression is starting to hit me and I HATE it. I just don't feel like ME anymore. It didn't bother me at first but after a few weeks have gone by I'm starting to notice the "hypo" symptoms more and more. Have any of you had your doctor delay upping your medication dosage like mine is? Is there a reason behind him doing that?

I guess on an aside (since this is already really long, I might as well add a rant to it) - I keep hearing "if you get cancer, you got the good one." I hate that! Does anyone else hear that over and over again? It sucks. No cancer is good cancer and yes, this one is very treatable, but it still sucks. It's still hard. These feelings I'm starting to feel are horrible and i wouldn't wish them on anyone. The platitude that it's a "good cancer" is so aggravating. I always feel like people are excusing it and it confuses me because it almost feels like people think that I don't have a right to be upset about any of this because I keep hearing "you got lucky on this one, Sarah. You sure got a good cancer."

Maybe I'm just being touchy and overreacting. Who knows. I never thought I'd join a cancer forum but I hate this and it feels good to know there are others out there who understand.

Anyway, thanks for reading my diatribe, and if you have insight, thanks in advance for your time.

- Sarah

lynn2318
Posts: 41
Joined: Jan 2010

I hate that statement too. Sure thyroid cancer is very treatable but it is still cancer. I also had papillary thyroid cancer, stage IV. It is classified stage IV due to my age, type, and it was in my lymph nodes. I had 2 RAI treatments but my thyroglobulin is still measurable which means I could still have cancer cells somewhere. I think people just don't know what it is like to be told you have cancer. Any cancer is bad. They are abnormal cells in your body that can make you very sick. It is very frustrating for anyone to minimize your cancer. I am glad you are getting another opinion about further treatment. Are they sending you to a endocrinologist? Please keep us posted and hang in there. You will feel yourself soon but be sure to tell your doctors all your feelings and symptoms. Another good web site is Thyca.com. Very informative.

sunnyaz
Posts: 582
Joined: Oct 2010

Hi Sarah,
Oh my, I just don't know where to start. I was diagnosed with Papillary Thyroid cancer and had my Thyroidectomy in November of last year. Then, in June of this year I had a Lymphectomy because my cancer had spread. My Endo did NOT opt for me to have the Radioactive Iodine treatment after my Total Thyroidectomy and I should have pushed for it. Can't say for sure, but I may not have the issues I have now if I had the RAI after the first surgery. I did have RAI in September of this year (after my 2nd surgery) but due to the fact that my ENT surgeon missed the main node he was going in to remove I am getting ready to go back into surgery on December 17th because it is still there, growing and has spread again now to the left side of my neck. The cancer started on the right side. After my second surgery my Endo did have the piece of mind to test my cells for the B-RAF mutation gene. This is a gene that makes the cancer more aggressive and more difficult to treat. If your cells are still in Pathology, I recommend requesting this test be done. I also recommend that you push for the RAI. It will suck but it could save you from recurrence and future surgeries. The more surgeries you have the harder they become and the risks become greater.

If they are not planning the RAI for you, it's time to adjust your meds up. If they are doing RAI keep them the same and push for the soonest available appointment and be VERY persistent! I would push your current doctor for the RAI. Don't buy the bull crap about the risks outweighing the benefits. They don't! There are very few risks with RAI and they aren't life threatening.

There is NO GOOD CANCER! I know plenty of people walking around without a lung, a breast, a kidney etc. and they don't have to take medication for the rest of their life to survive. Don't let anyone tell you that line of CRAP. Thyroid cancer IS serious and it doesn't matter what kind. Defend yourself and arm yourself with the facts. Get an Oncologist if you don't already have one. Endo's and ENT's can't treat your cancer the same as an Oncologist. This is the mistake that was made in my care. I finally have an Endocrinology/Oncology Doctor who is a surgeon. I am lucky to have the University of Arizona Cancer Center available to me.

Please don't hesitate to write me a personal email if you have any other questions. I am not a doctor, but I am in the Medical field. I was the one who found my own Cancer. I had to push my PCP to do the biopsy. He didn't think it was anything serious despite all the symptoms. I have said this in other posts, and I will say it again; WE must be our own advocates.

Best Wishes,
SunnyAZ
Julie

nasher
Posts: 507
Joined: Apr 2010

when the doc said it was the type of cancer to get.. i literally told her if she wanted a transplant of my thyroid tissue since its the one they want to get.

she back stepped a bit and then said some more things i cant fully remember.

the docs are sometimes good at surgery but there tact level just sucks.

you are not overreacting.

i am 9 months post surgery and it still sucks

i am approaching the time i get to talk to endo about my synthroid levels and complain that they are not giving me enough energy.

I do remember the depression when i was off thyroid meds and even before surgery.

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