Anyone with Thyroid Cancer post RNY? (cross post)
Hi,
First, I am sorry to hear the news that you are dealing with a re-occurence.
I had thyroid cancer last year after a DS in 2001. Not the RNY but will post for your reference anyway. The type of thyroid cancer I had was Papillary. I did the surgery to have the thyroid removed and then the RadioAbelation Therapy (RAI) twice afterwards. In preparation for the radiation, I did the Iodine-free diet for two weeks as suggested on www.thyca.com ( the standard to prep for this treatment that is medically acceptable). I also took two pills the two days before radioabelation called Thyrogen. Thyrogen is fairly new and is supposed to be designed to deplete the body of iodine whether you go on a two week abelation diet prior to the radiation ingestion or not. My docs are on the conservative side and had me do both which I am glad to have done.
The pills are not difficult to swallow so will not create a problem in taking.
The concern that was an unknown for me was about the actual radiation being absorbed. Since I have a DS, and the radiation is in fat soluable pill form, I had to have mine in liquid form to swallow. For you, with the RNY, this willunlikely be an issue as you do not have malabsorption as part of this type of WLS.
It was unclear to the Nuclear Med MD just how much was being absorbed; however, I did have side effects from the radiation so the docs felt there had been absorption. I had scans afterwards, did the abelation another time and with rescan, nothing lit up....six months after last radiation, I now show a possible recurrence that MD is watching and will rescan in Sept. I will have to go through the abelation diet and Throgen tabs again in Sept...
Hope this is of some help in giving you more info from my experience.
Wishing you all the best in your health journey.
Best,
Karen
First, I am sorry to hear the news that you are dealing with a re-occurence.
I had thyroid cancer last year after a DS in 2001. Not the RNY but will post for your reference anyway. The type of thyroid cancer I had was Papillary. I did the surgery to have the thyroid removed and then the RadioAbelation Therapy (RAI) twice afterwards. In preparation for the radiation, I did the Iodine-free diet for two weeks as suggested on www.thyca.com ( the standard to prep for this treatment that is medically acceptable). I also took two pills the two days before radioabelation called Thyrogen. Thyrogen is fairly new and is supposed to be designed to deplete the body of iodine whether you go on a two week abelation diet prior to the radiation ingestion or not. My docs are on the conservative side and had me do both which I am glad to have done.
The pills are not difficult to swallow so will not create a problem in taking.
The concern that was an unknown for me was about the actual radiation being absorbed. Since I have a DS, and the radiation is in fat soluable pill form, I had to have mine in liquid form to swallow. For you, with the RNY, this willunlikely be an issue as you do not have malabsorption as part of this type of WLS.
It was unclear to the Nuclear Med MD just how much was being absorbed; however, I did have side effects from the radiation so the docs felt there had been absorption. I had scans afterwards, did the abelation another time and with rescan, nothing lit up....six months after last radiation, I now show a possible recurrence that MD is watching and will rescan in Sept. I will have to go through the abelation diet and Throgen tabs again in Sept...
Hope this is of some help in giving you more info from my experience.
Wishing you all the best in your health journey.
Best,
Karen
Hi - I too had thyroid cancer. I had a thyroidectomy (sp?) back in 2005. Two radioactive ablations and yearly PET scans. This year and this month I had my yearly PET scan and I have a .5 cm lesion on the right side of my neck and two lymph nodes on the left lite up and the back of my tongue lite up as well as the back of my throat. I'm scared. They are sending me back to UCSF to my original surgeon who did the original surgery. I don't know what to think. It's very scary to think that after all this time, it's back again........
Hi Carol,
Thank you for your very generous reply to my post. I am so sorry to hear of these latest symptoms
you are dealing with. It is scary, I can certainly understand your fears. If I can be of any consolation to you regarding UCSF, I would welcome the opportunity. I am not sure from your post if your "original surgery" that you referenced is to your thyroidectomy or your bariatric surgery. If it is the thyroidectomy, UCSF's Head and Neck Oncology program, part of the UCSF Helen Diller Family Comprehensive Cancer Center and located at the Mt Zion campus o****F in SF, CA, is the tops. I can recommend anyone there (David Eisele, MD is head of division) and, most especially, Lisa Orloff, MD, who specializes in thyroid cancers and is world renown. She is also my doc who is following me since I switched from the endocrinologist who did my surgery last year. They are very thorough and comprehensive, not to mention, respectful and caring. As an addition, which I think is essential for this kind of care, Lisa involves the ENT folks for voice and swallowing to make sure the vocal cord can be protected from any additional surgeries or treatments you may have to have. I originally got my surgery done by Orlo Clark, MD at UCSF (Endocrine) , also who trained Lisa Orloff. He has since retired and his colleague, Dr. E. Kebebew, has left to go to NIH. They are being replaced by Dr. Du and Shen, both very good surgeons but part of the Head and Neck Cancer Division but rather General Surgery. May I recommend that you get a consult with Dr. Orloff or, if she is not available, Dr. Eisele, if at all possible?
If I can be of any further help, Please do not hesitate to write. Also, may I recommend a book I found most helpful in coping with cancer and possible recurences- it is called Dancing in Limbo:Making Sense of Life After Cancer by Glenna Halvorson-Boyd and Lisa K. Hunter. Was published in 1995 and you can find used copies on Amazon. An amazing book and Glenna had Head and Neck Cancer....
Know my thoughts and prayers are with you as you go through this time of uncertainty and fear.
All my best,
Karen
Thank you for your very generous reply to my post. I am so sorry to hear of these latest symptoms
you are dealing with. It is scary, I can certainly understand your fears. If I can be of any consolation to you regarding UCSF, I would welcome the opportunity. I am not sure from your post if your "original surgery" that you referenced is to your thyroidectomy or your bariatric surgery. If it is the thyroidectomy, UCSF's Head and Neck Oncology program, part of the UCSF Helen Diller Family Comprehensive Cancer Center and located at the Mt Zion campus o****F in SF, CA, is the tops. I can recommend anyone there (David Eisele, MD is head of division) and, most especially, Lisa Orloff, MD, who specializes in thyroid cancers and is world renown. She is also my doc who is following me since I switched from the endocrinologist who did my surgery last year. They are very thorough and comprehensive, not to mention, respectful and caring. As an addition, which I think is essential for this kind of care, Lisa involves the ENT folks for voice and swallowing to make sure the vocal cord can be protected from any additional surgeries or treatments you may have to have. I originally got my surgery done by Orlo Clark, MD at UCSF (Endocrine) , also who trained Lisa Orloff. He has since retired and his colleague, Dr. E. Kebebew, has left to go to NIH. They are being replaced by Dr. Du and Shen, both very good surgeons but part of the Head and Neck Cancer Division but rather General Surgery. May I recommend that you get a consult with Dr. Orloff or, if she is not available, Dr. Eisele, if at all possible?
If I can be of any further help, Please do not hesitate to write. Also, may I recommend a book I found most helpful in coping with cancer and possible recurences- it is called Dancing in Limbo:Making Sense of Life After Cancer by Glenna Halvorson-Boyd and Lisa K. Hunter. Was published in 1995 and you can find used copies on Amazon. An amazing book and Glenna had Head and Neck Cancer....
Know my thoughts and prayers are with you as you go through this time of uncertainty and fear.
All my best,
Karen
HI EVERYONE
JUST HAD THYROIDECTOMY LAST WEEK. NO ONE MENTIONED THE NUMBNESS AND TINGLING I WOULD BE FEELING.
:o(
I AM GOING OUT OF MY MIND!!! THE HOSPITAL SAID TO DOUBLE THE CALCIUM IF THIS HAPPENS AND I HAVE AN D STILL NO RELIEF. I CANNOT FEEL MY MOUTH AND THE NUMB
AND TING IS NOT JUST HANDS AND FEET BUT ALL OVER. OFCOURSE IT'S THE WEEK END
AND HARD TO GET A HOLD OF ANYONE IN THE MED FIELD UNLESS I WANT TO GO BACK
TO HOSP. NO WAY!!!!!
ANYWYAS I HAD MY RNY 2005 AND OBVIOUSLY HAVE A PROBLEM ABSORBING CALCIUM.
MY VIT D WAS LOW BEFORE SURGERY AND ALSO ANEMIC. I HAVE BEEN EATING UP CALCIUM
PILLS LIKE CRAZY AND VIT D ALSO. ANY SUGGESTIONS WOULD BE GREATLY APPRECIATED.
THANKS.
JUST HAD THYROIDECTOMY LAST WEEK. NO ONE MENTIONED THE NUMBNESS AND TINGLING I WOULD BE FEELING.
:o(
I AM GOING OUT OF MY MIND!!! THE HOSPITAL SAID TO DOUBLE THE CALCIUM IF THIS HAPPENS AND I HAVE AN D STILL NO RELIEF. I CANNOT FEEL MY MOUTH AND THE NUMB
AND TING IS NOT JUST HANDS AND FEET BUT ALL OVER. OFCOURSE IT'S THE WEEK END
AND HARD TO GET A HOLD OF ANYONE IN THE MED FIELD UNLESS I WANT TO GO BACK
TO HOSP. NO WAY!!!!!
ANYWYAS I HAD MY RNY 2005 AND OBVIOUSLY HAVE A PROBLEM ABSORBING CALCIUM.
MY VIT D WAS LOW BEFORE SURGERY AND ALSO ANEMIC. I HAVE BEEN EATING UP CALCIUM
PILLS LIKE CRAZY AND VIT D ALSO. ANY SUGGESTIONS WOULD BE GREATLY APPRECIATED.
THANKS.
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