Thyroid ... another adventure! :-)

Tirian

I never thought I would be adding a post to another discussion board. I had been Dx'ed with melanoma a couple few years ago, and the board was a tremendous help. Now, I've got surgery in a few weeks that will determine if I will be a member here or not.

A month or so ago, I was getting some weakness and numbness in my left arm/hand and went to the doctor. Thinking it was just a pinched nerve, you could have knocked me over when he said "your symptoms are classic of melanoma that has spread to the brain."

The next few days burned through some major health care dollars as I had a half a dozen MRI's, and heard the glorious words "Your MRI's are boringly normal." Fantastic! However. There always seems to be a "however."

"The spinal MRI showed something else - two large masses on your thyroid. We'll get an ultrasound."

Ultrasound confirmed I had two solid masses, and then went for the Fine Needle Biopsy (okay, where is the FINE part of that? It felt more like a Knitting Needle Biopsy!). Waiting the week for those results was tortuous (as most all of you know) and it came back as inconclusive for follicular neoplasm.

I saw the head/neck surgeon yesterday and am having a hemi-thyroidectomy. The big tumor side is coming out. If after the final pathology report it shows a definitive follicular malignancy, then I'll return the next week for a completion thyroidectomy and the wonderful treatments y'all have read about here. I mean that in all seriousness. Of all the cancers to get, there IS a magic bullet (I-131) for this kind.

I was so taken back with the time the surgeon spent with me -- more than an hour. Turns out I was his only patient that afternoon (the surgery schedule was clear and they moved my appointment to fill the spot). I'm very comfortable with where we're going, the plan makes sense, and I trust this guy. I couldn't have asked for better care. I have to laugh, he's also a plastic surgeon so he assured me the neck closure would be good (after all, I DO live in L.A.!) :-)

There actually IS a question buried in all this...

Mom. I'm in my 50's and I know a child is always your child no matter the age. I have a hard enough time dealing with her dealing with me having a cold, much less something more serious. If I balk at something she suggests it's "Don't be ridiculous" and goes ahead and does it anyway. I am a very private person when it comes to my health and first, I don't want to be barfing or whatever in front of family or friends. I'm not there in the hospital to be entertaining -- I want to be in my own Demerol induced haze and get better. I know people are concerned and care deeply, but this is kind of the "me" show and "I" need to get through this, and not be so caught up in dealing with how other people (and Mom) are dealing with it. It's exhausting.

I just found that she has been on the phone calling the world. My brother called me, and while it was great to have a talk with him (he's a great guy), I laughed when he said "I guess mom doesn't understand about HIPAA regulations!" Do federal privacy laws apply to her? I finally called her on the phone and said "Mom, I know you're concerned, but I want to be the one to tell the people I want to know. Please don't call anyone else." [Deep breath].

Ideas? A friend of mine suggested that I ask the doctor to write an order for "No Visitors" for the couple days I'm in the hospital. Besides, I'm not going to be able to talk much, nor will I want to, and I want the opportunity to be a little vulnerable as a patient and not HAVE to have the strong faced role I normally have. I don't want to have to worry that any cough or pain twinge I have will send Mom scurrying to get the nurse, responding to my objection with "Don't be ridiculous."

I know she will worry, and wants to help. I don't know if it's possible to even set up boundaries with someone who, while well-meaning, doesn't understand boundaries. I also don't want to hurt her feelings.

Wow -- I'm stressing now just thinking about it. I should only be worried about getting better, not how I'm going to deal with a family dynamic of my own illness.

Gods forbid it comes back malignant. I know I'll be fine with treatment -- is there an I-131 equivalent for overprotective, without-boundaries, not-listening mothers?

Thanks for letting me vent here. I'll certainly post back when I know more!

sunnyaz

Thyroid-Another Adventure
And a life-long adventure I am sorry to tell you. First, bit of advise; stop stressing out on other family members stress and desire to help. Let them worry about you if they choose. I recommend having the whole Thyroid removed if they are sure it's cancer, especially Follicular. Better to have one surgery than two. They should be able to tell when they open you up if it's cancer or not. I had a fine needle biopsy in May and knew within minutes (before they even removed the pressure bandage) that my cancer was back (Papillary)that had invaded the Lymph nodes only six months after my Total Thyroidectomy. RAI (I-131) is not a "magic bullet" I am sorry to tell you. It will remove any remaining Thyroid tissue (but not the cancer) which will reduce the risk of recurrence. No guarantees. I had RAI in September, still had a tumor and didn't know it at the time. RAI did nothing to it. It didn't even show on the scan. It was found on a Sonogram done at the beginning of this month when I went back to my Endocrinologist complaining of exhaustion and fatigue. He already knew that the 5 mm node he found on the Sono in May before my second surgery in June did not make it to pathology. Now it is 7 mm and spreading. Follicular cancer in particular is nothing to mess with. My advise: get it out as quick as you can if it is conclusive. I am not a doctor but I am a Medical professional. I deal with this kind of thing every day. Most Endocrinologists recommend a Total Thyroidectomy instead of partial if the Dx is definitively cancer. Two surgeries will be very difficult on you. Scar tissue builds up and surgeries become more difficult for the surgeons. I wish you the best. God Bless you and please keep us informed of your progress.
SunnyAZ

tl

thyroid
Just to let you know I have been there and done that 4 times now. Ive had kidney, breast, thyroid and uterine cancer. It sounds as if your stressing but with good reason.

i had my thyroid removed and took a radiation pill which did make me nauseous one day.

If is a big word, but if you have to go thru it, you will do just fine. You will be in my prayers. tina

patsplace

the family that loves us
I've been following this board though not diagnosed with thyroid cancer, but am carefully tracking pre-cancerous Hurthle & follicular cells--all this found in the midst of abdominal radiation for uterine cancer last summer...Anyway, I too am a very private person with over-helpful family--cousins & aunts setting up blog sites for me that I don't want (and with my full name as the title!); my parents are calling family all over, not to mention hospitals and cancer centers and wellness centers--not just gathering info for me, but making arrangements for me to go there. I finally wrote to everyone--used my christmas card list-- and asked them to please send me their good ideas, but to talk with me before they set anything up, simply because I don't have time to take advantage of everything! I also set up a website on caringbridge.org and sent the address to close family & friends. I can post updates when I have a chance, and anyone who has the address can check in anytime; if they leave a note in the "guestbook", I know they've visited and can send a note when I have a chance. Doesn't really help for those that come to visit you in the hospital...but it might help with some future control. I know they are all scared too, and their preemptive actions are simply their way of easing that fear, but we have to let them know that no matter how much we love them, we have to deal with our situations in our own way, on our own terms, not theirs. I will spend this weekend with my parents talking about all of this...and the likelihood that I'll die before them. 'T'ain't easy. But I have to breath deep and remember how thankful I am to have the opportunity to talk with them right now.