Replies

Sorry for you and mainly your wife. Hope she is okay. My wife underwent treatment about 6 years ago.

Radical neck operation. Thyroid removed along with para thyroids, rebuilt carotid artery and jugular, 64 other nodes (mostly lymph nodes in head neck and upper body removed), they also took a large part of her voice box, and several other things. Inserted a plastic shunt so she had some speech ability.

Surgery was tough, but she is still alive and now the main problem is she is NON AVID. Which means her cancer will not uptake the radioactive Iodine to mark any Thyroid cancer in other places it may have spread to. So every year they can not get a reading if the cancer is now growing else where in her body.

she get some sort of chemo and every year needs to go back and given some sort of hormone treatment that rids her body of any traces of Thyroid hormone to get better radioactive readings of present progress (if any) of any potential flare up of the Thyroid cancer anywhere in her body.
Those show there are traces everywhere, but not enough for more aggressive chemo or nuclear treatment at this time. The surgery was at UPMC by Meyers, and her follow up is mostly at Hershey Med canter. She looked terrible after the surgery, but has generally been okay. Meyers was the surgeon who did Renquist for the same thing just a couple of months before. She lived, he died.

She is a model for all the medical students every year on follow up visits. The doctors office is usually packed with Residents, and Fellows who want to see how someone who Meyers had operated on is doing. Even at Penn State Hershey Med center for anyone who had such a radical treatment she is doing fine.

She is still alive and doing relatively well so there is much hope for a good outcome for your wife. Prayers and fingers crossed for your wife. Mine is several years (6 or 7) past what they thought when she was first diagnosed and operated on. She thanks God every day that she had Meyers as the surgeon.

Johns Hopkins first misdiagnosed her and that operation they wanted to do (carotid body tumor) would probably/certainly have killed her. We went to Meyers on a 2nd opinion type of visit just 3 days before Hopkins wanted to operate. Meyers saw her and operated in less than 36 hours. Meyers also was the one called in to do Rehnquist for the same thing only a month or two before my wife. Rehnquist died, she lived.

Her treatments are still somewhat reserved as O care is affecting the way she is treated. Hope it works out for your wife. Prayers up for her and you.

Prayers for your wife and yourself. Her path report got routed wrong initially so it was about a month before we even learned the initial biopsy report warranting surgery. The day after surgery she developed Pneumonia and that was a set back as well.

We've been blessed with good doctors and a good surgeon who did her previous colostomy and assisted in urostomy. That surgery also saved her life. Quads get many UTI's.

Twenty seven years ago the typical life expectancy for a C-5 C-6 level quad was 5-7 years after onset. She beat those odds and several very close calls along the way. We were not married when she went quad but were dating and serious. We married about half way through her six month hospital stay.

Nine years later I had some disabling issues hit. Nothing that will kill me but makes employment impossible. So we just take care of each other. She's my concentration when I'm having a bad day and I'm her brawn LOL.

We got to go back this Wednesday for a scan from head to thighs to look for hot spots. Doctor told us if they showed up not to freak the treatment would handle it in due time and some are false hot spots also.

Oh yeah, because they can not get a good reading every year on the Thyroid cancer spread or cure, her blood work is not completely clear of signs of it. All the doctors and hospitals still rate her as a stage 4 cancer victim/survivor. So it is all OK in our books that she is still alive.

Oh and the added benefit is that because her neck and face were so affected by the radical neck operation three years ago they did plastic surgery and she looks great! (Trophy wife! :-)

Now, no way except for a thin line on her neck does she look like she had such an invasive operations. She looks great for 60 and much younger than her friends of the same age. Most of her friends were/are nurses of the same age, and she looks much better than them... but I am biased.

Me? I never would have had the follow-up plastic surgery. I HATE needles and hospitals in general. But she is such a trooper and a sweet person so she did. So I guess there is a silver lining to all she went through.

If you search on FR for me (JSTEFF) or Thyroid cancer you may find the long descriptions from back in 2004 or 2005 of the operation and all we went through back then. Good luck. Freepmail me if you or your wife wants to communicate about that it has all been like for my wife or me.Good luck.