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Where Is Everybody?

mhc4165
Posts: 46
Joined: Dec 2008

I was wondering why this site has been so dead,where is everybody for some understanding and support?

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

It has been an awfully quiet board lately. I check every week or so but the questions of late are not ones I could really chime in on. how are you? I have lung mets and am on a chemo drug. Sometimes I prefer to be off boards - to check out and temporarily ignore the situation if I can. But I try to help when I can too. 

mhc4165
Posts: 46
Joined: Dec 2008

alapah,

Thank you very much for your nice response! I'm very sorry that you have mets to your lungs,how scary! But I have read other people's posts on here and on other thyroid ,thyroid cancer and general health boards who survived after thyroid cancer spread to their breast tissue,lymph nodes,joints,lungs etc. What type of thyroid cancer do you have and if you don't mind me asking how old are you?

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

I am 46 and was diagnosed with papillary thyca in 2009. The tumor was unencapsulated and partially adhered to my trachea. I underwent thyroidectomy, RAIandsix weeks of radiation to my neck in 2009. It seems to be a more aggressive form than most. Mets in the lungs are difficult to treat partly because they cant remove them like they would remove an infected lymph node or muscle tissue. Lots of ongoing trials and research offer hope. I feel good at the moment so im fortunate in that respect.

mhc4165
Posts: 46
Joined: Dec 2008

I really hope you get and feel better!

candid
Posts: 16
Joined: Mar 2014

alapah, hopefully thinsg went well with you and you are feeling a lot better.

candid

CLRRN's picture
CLRRN
Posts: 126
Joined: Jun 2010

I used to be on here all the time but it got exhausting. Maybe somewhat selfish of me and I apologize. I was on the head/neck cancer discussion board because my partner was diagnosed w/stage 4 tonsil cancer in 2010. He is doing well and remains disease free!  In 2011 I was diagnosed thyroid (follicular).

I hope to be more diligent in reading the boards and staying in touch. I think we can all support each other in some aspect and I apologize for not being here!

Chris

bouncer
Posts: 27
Joined: Apr 2012

I am another who used to be on here all the time, checking what was happening to me. Since I had the (tentative) all clear, I have not been on so often. I was lucky in having been diagnosed early but, due to surgeon incompetance, I ended up with three operations over two years, just to get all of the thyroid removed. I then had RIA, but took up so much of the radiation, due to poor thyroid removal, that I now have internal radiation burns in my neck - along with the scar tissue from the three operations. Still, can't complain if the cancer has all gone!

mhc4165
Posts: 46
Joined: Dec 2008

 Thank you for responding.Bouncer I'm sorry that happened to you! What type of thyroid cancer did you have?

bouncer
Posts: 27
Joined: Apr 2012

Hi mhc, sorry for slow reply, but had to find the letter from the hospital, to make sure I got it right!! According to the letter, I had Folllicular Papillary Carcinoma of the right thyroid. The tumour and right thyroid were removed in APril 2011, then the left thyroid was removed a month later, along with a selection of lymph nodes. After two failed RIAs, due to high iodine levels, despite following the diet, I had more scans, which revealed some of the right thyroid still in situ, behind the carotid artery. This was removed at a different hospital, by a different surgeon from the first two ops, in February 2012, and then I was abe to have the RIA two months later. It appears that a lot of "bits" of thyroid tissue/lymph glands remained, and this was why I had a high uptake, resulting in the "burn". Interestingly, my neighbour had their whole thyroid removed in one operation by my second surgeon, followed by RIA six weeks later, and no ill effects whatsoever.

mhc4165
Posts: 46
Joined: Dec 2008

CLRRN,

Thank you also for your response. I'm sorry that you had follicular thyroid cancer. How old were you when you were diagnosed and how did you find out?

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