Papillary Thyroid Cancer Patient needs help

Monijo said:

I'm sorry
I get soooo tired of people saying "At least it was thyroid cancer." Cancer is cancer no matter where it is. When I was told my thyroid and lymph nodes where covered in cancer, I felt like I had been handed a death sentence. I was scared. If thyroid cancer is no big deal then why do we have to have yearly full body scans? Why do we have to have blood work every 3-4 months to check the thyrogloblin (I don't know how to spell it) levels? I have a friend who has been battling thyroid cancer for 14 years. She is now resistant to RAI and whenever they find it, it is automatic surgery. Once someone has cancer, they have a higher chance of getting it somewhere else in their lifetime. We hear soooo much about breast cancer and soooo little about thyroid cancer. I know of a lady who had breast cancer and she had radiation shot into her breast and now she is fine.....Not so with thyroid cancer. We have to go through 6-8 months, if not longer, of fatigue, crazy emotions, foggy brain, etc,etc. So many people with thyroid cancer feel like they are alone, but we aren't. I'm glad we have this web site to vent.

Cheated said:

There is no EASY Cancer

Hi

First of all, let me just say, your ENT is a jerk. Anyone who performs a surgery has a duty to follow up and answer your questions. But, I'm curious, why an ENT and not an Oncologist? My surgery was performed by an Endocrine surgeon, but then I was immediately hooked up with an Oncologist, who would handle the RAI, yearly scans, etc. My Endo just monitors my bloodwork and Levo prescriptions.

Anyway, my initial surgery and treatment was a year ago. I am due to go back for a scan the last week of January. You mentioned the spots on your scan and worrying about being resistant to the RAI. What I was told last year by my oncologist's nursing staff, was that I would just continue to take my Levo/synthroid for the next year, and that there was nothing else they could do at that time because the latest research had shown (apparently my oncologist had just been to a research seminar) that the RAI could continue working for up to one year. That doesn't mean you're walking around radioactive and a danger to your loved ones for that long, just that internally, your body could still benefit from the RAI. My scan had showed my body clear, but "activity" in my neck. When I asked what that meant, they told me it could either be Cancer cells, or it could be leftover thyroid tissue that they couldn't get out in the surgery - just microscopic bits of tissue. So, supposedly, the theory is that a year later, they will be able to see if there is still activity in my neck. If so, I guess they will assume it is Cancer and send me back for more RAI. Otherwise, I expect to be released again until next year.

I don't think that having only been through the RAI once, you're "resistant" to it. It's just that unfortunately, some of us have to go through it more than once to truly kick this Cancer. But before you go thinking I'm all cheery about it, I'm not.

I'm due back for my scan in a few weeks, only to be thrown some curve balls I wasn't expecting so I'm plenty ticked off too. And, I am about the most calm person you'd ever meet. In times of extreme stress, my blood pressure has never wavered, I calmly make decisions, etc. However, some of the discussions with the oncologists office this year have sent me nearly into panic attacks - heart racing, etc. That is completely out of character for me. So, no, I don't believe this is an easy Cancer. I've found, too, that I hesitate to talk about my Cancer because there are people who have it so much worse, going through Chemo, losing hair, being sick all the time, etc. It's almost like I have felt like I didn't have a "right" to my feelings because I have a "lesser" form of Cancer.

But, now that my follow up scan is approaching and I see all that I have to go through and have been informed that they are still looking for spread in my body, even though the scan last year was clear, I now feel like Thyroid Cancer sucks as much as any other Cancer and I'm grateful for this board because I have needed a place where it's safe to say that.

I've recently had a family member say regarding my upcoming treatment, "Oh, you'll survive" - she meant the unpleasantness I have to go through. I know this relative loves me, but her comment was so insensitive and it just cut so deeply. Whether or not "I'll survive" is not the point. The point is it sucks to have to go through it and a little sympathy and compassion would be nice.

I hate Cancer. I've always hated doctors. I avoided doctors for 30 years and suddenly I've got a whole host of people on my "staff".

So, no matter how "easy" this Cancer is supposed to be, my user name reflects my attitude - I feel that I have been cheated out of the next decade. Life may go on, but it will never be the same, it will not return to normal. My children's young childhood years will be overshadowed by Cancer - even if it's "beatable", it's still there - reminding me all the time that I still have to deal with it. So, it cheats me out of a normal, relaxed life, a life where I get to just enjoy and savor my kids, and enjoy the last decade of my life before I hit "middle age". It has cheated me out of so much more emotionally, but this post is long enough.

I wish you well with your ongoing treatment, but I would definitely look into finding an oncologist who specializes in the Endocrine field.

Monijo said:

My friend has had 3
My friend has had 3 surgeries. The last one she had was a year ago and they found it in her collar bone. Your definitely not alone!!!!

AlexMother said:

My son if just as frustrated!
My Son was diagnosed Feb 2009 after also finding a lump on the right side of his neck. His ENT sent him for multiple test one of which was a CT with contrast. After a needle biopsy that was inconclusive we went for a surgical biopsy this is when we discovered he had Papillary Carcinoma we were also told at the same sit down that this is the cancer to have if you have one.... I too hate this comment and the false hope it gives the person who faces a lifetime of unknown. My son's surgery was a modified radical neck dissection with total thyroidectomy. His surgery lasted over 5 hrs which was only to be 3 at best. The amount of desease my son had and the fact that all the cancer in his upper chest area did not show up on the Pet/ct that was done just prior to surgery?? This is still unknown why. It was complicated and my son lost the use of the right side of his tongue (this was never discussed as a risk at the consultation prior to surgery) all who was involved was confused as to why this happened. My son's ENT told us he would be taking care of Alex from this point on however, I did find that most patients are sent to the Endocrinologist. If we had been I think my son's Radiation treatment would have been different. He was given radiation 7 wks after his CT with contrast and the recommended is 3mo. after any iodine contrast test due to the stunning effect the cells can not uptake due to they are already full of the iodine from the previous test. Dr also told us he was good all was good. However 5 mo. later another lump on my son's neck and this time the cancer was back his current surgeon just wanted to do a total radical neck dissection which my son at the young age of 21 wanted to keep his muscle and nerves so we went for a second opinion. 2nd surgeon saved all but found presistant desease. my son had is 2nd modified radical neck dissection surgery Nov 2009 and is still having a hard time with recovery this go around. Damage to the accessory nerve has caused pain on a daily basis. We were told at this point there is no cure for my son due to the amount that was spread through the lymph system that our goal now is to control it. This being the best cancer to have NOT in my book at all!!! I want my son to have his life back and be able to plan a future instead of living in limbo. He is going in for radiation again they will be hitting him with as much as his body can take at one time?? His chance of having a family after this is extreamely small and since it has not been a year since his last radiation he can not donate to the sperm bank. All this is hard for such a young person to take and it has shown this last go around on his emotional well being. We continue to look to the goal and do what we can to get there. My son just wants to be 21 again and live like he is. It makes me sad all the young people going through such a horific experience before they even have a chance to live life with no worries!