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vent & question about specialists

Jessica_in_Midwest
Posts: 6
Joined: Nov 2010

Hi, all. I don't post often, but I've learned a lot from reading this board. Anyway, I need to communicate with people in the same boat as I am in. I had a total thyroidectomy in November 2010, RAI in December 2010, and yesterday my endo called and said that the last biopsy shows that I have 2 cancerous lymph nodes that need to be removed. I think that one of the nodes was there when I had the thyroidectomy. So, besides needing to vent to people who know what this is like, I also wanted to ask: what kind of specialists do you see? Right now I see an endocrinologist, but I was advised by aunt who is a nurse that I should also be seeing an oncologist. What do you think?
Thanks,
Jessica

diane2h81's picture
diane2h81
Posts: 41
Joined: May 2010

I agree with your aunt and think it would be a great idea to find an oncologist. Ask your endocrinologist or your generalist if they have one to refer you to. Or if you have a cancer care center near by go there. Don't let your other doctors tell you that you do not need one. When you call to set up an appointment make sure the oncologist treats or specializes in thyroid cancer. I'm currently working to find one myself. From reading the a lot of other posts, it appears that others are also seeing an oncologist.

sunnyaz
Posts: 582
Joined: Oct 2010

Hi Jessica,

I agree with Diane and your Aunt. I had an ENT do my first and second surgery (right neck dissection) when I had metastasis to the Lymph nodes seven months after my Total Thyroidectomy. He missed the main nodes that were biopsied and found on the Sonogram! After that I was sent to an Oncologist/Endocrinologist (by my regular Endocrinologist) who is also a surgeon at the University of Arizona Cancer Center. He knew how my cancer spreads. He explained to me in full detail the sections of the neck and the nature of metastasis. My ENT didn't have a clue about how cancer spreads.

First it goes to sections five and six. Then it spreads to sections two, three and four. Five and six are right next to the throat. My ENT went to sections two, three and four. While he did take out three cancerous nodes out of thirty four he removed, he failed to realize that if it had already spread to those sections; it must have gone to five and six first. Since that was where the original biopsy was done and he didn't even read the sonogram or the biopsy report, I assume he just cut me open and went for whatever he thought was cancerous and missed the cause of the spread. In the mean time he took a lot of nodes that didn't need to be removed.

It is important for your doctor to know how this type of cancer spreads in order to get it right the first time. I had to have a right neck dissection re-do this past December and another dose of RAI on the 4th of this month. My first dose was 83 mCi's (September 2010). Second dose was 178 mCi's (close to the max dose of 200). I could have avoided the third surgery and second dose of RAI if I had the Endocrinologist/Oncologist/Surgeon for my second surgery.

I hope this helps. I wish you the best in finding a good specialist. You might have to travel but believe me, it's worth it.

Julie-SunnyAZ

Shickshinny
Posts: 1
Joined: Feb 2011

My wife had a biopsy on her left lobe and it came back as "suspicious" follicular carcinoma. I am suspicious of the "specialist" we were referred to. Is there any way to get a listing of doctors who specialize in this operation/diagnosis in this subject area. We live in PA, but will travel if need be.

alapah's picture
alapah
Posts: 258
Joined: Oct 2009

From my experience, it is a bit tricky because so much seems to depend on your particular doctor's experience. My hometown endocrinologist is not an oncologist but she is really 'up' on thyroid cancer. She also knows who the big players are as far as thyroid cancer goes and has always been very good about suggesting specialists, making referrals and working with those specialists. I had external beam radiation at Mayo so I have a radiation oncologist as well as my endo. I also now have a medical oncologist but my team at Mayo only recently referred me to him because of lung mets. Not many medical oncologists do much with thyroid cancer - their foray into thyroid cancer is kind of a new because, as I have been told, past treatments were pretty much RAI, not chemotherapy drugs.

It can be really frustrating trying to find even a good endo for thyroid cancer - I guess I can't really recommend how to find good ones as I was fortunate to have been given an excellent referral by an ENT. When I was shopping for a radiation oncologist I started by asking my endo and also friends who have friends in the medical field. I also did a little online research when it came to the radiation oncologist but I didn't actually choose him in particular - in that case I contacted Mayo with my medical history and they set me up with him.

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