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soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

After reading a number of recent posts here, I have some advice for all of us who are survivors of head/neck cancer. I submit it humbly.

I had surg in oct of '05 for head/neck, wherein they replaced half of my tongue with part of my arm, along with some nerves from that same area. Basically, they cut the lower part of my face in half, so that they could get to things, and then also took out some lymph nodes in my neck.

I subsequently underwent 33 rad treatments (dodged two over the holidays :)) and a number of chemotherapy days, designed to clear up any malingerers.

I knew what the chances were for a cure from the time I made my first post-op visit to the surgeon: in my case, after a few years my chances of total cure, according to the pamphlets I read, was 85%, and this would increase to 95% after five years.

In the meantime, I quit smoking prior to surgery, of course, and made my visits to various doctors on the team religiously.

It turns out that in my case, CAT and/or PET scans were NOT part of on-going post-treatment care, which I now find utterly amazing and disappointing. It never occurred to me that such should be the case, admittedly....I relied on the doctors and on the plan.

The plan SHOULD have included, minimially, a CAT scan periodically.

It now appears that my particular cancer has returned to my head/neck AND metastisized into my lungs, although the spots in my lungs are still too small from which to get an accurate diagnosis.

But I am left with the question: had my wife and I not insisted (to our family doctor, no less) that I receive a CAT scan for a nebulous cough, there would be no knowledge at this time that the highly probable potential for cancer recurrance was something that needed to be dealt with immediately.

I suspect that insurance companies are behind 'the plan' and what is permitted and what is not during post-treatment care. I do not fault them, and I do not fault my doctors. There should be some limit on care provided, else none but the very rich could afford healthcare at all.

At the same time, in this case, I strongly advise that you consult with the doctor you trust most and arrange for an approved CAT scan on a periodic basis until you are very comfortable with your more or less absolute cure.

Be advised, please, that I am not whining or blaming, or anything of the sort. I am giving some advice in hindsight that I hope will never be useful to any of you :).

Take care, my friends.

TereB
Posts: 288
Joined: Apr 2003

Hey Soccer,

I am so sorry this is happening to you (I wish it wasn't so) and I think it is very nice of you to alert the rest of us.

You are right about the scans, they are important. I see my oncologist 2-3 times a year and at least once a year I get an MRI to check my mets on bones, a CT scan to check the soft tissues and a blood test. This is when I am well.

I do not know if the insurance companies have anything to do with this. My oncologist orders the tests and I get them with no problem from my insurance. Hopes it stays that way since I just changed insurance companies.

I am lucky that I have good doctors. I see my radiologist regularly too and he always checks the test results.

With the first tumor, I had an MRI first and after the surgery nothing, just visits to the doctor, no tests. My doctor never ordered tests after surgery even when I complained of pain. Well, the tumor grew back and was twice the size of the one that had been taken out and nobody knew because there were no tests. This could have been found out early if there had been one MRI. Needless to say, I changed doctors and I take a more active part in my healthcare.

It is a good thing you and your wife insisted on getting a CAT Scan. I wish I had done that after I had surgery years ago.

All the best to you and yours, Soccer. You are all in my prayers!

God Bless,
TereB

TereB
Posts: 288
Joined: Apr 2003

I was wrong in saying the insurance companies didn't have anything to do with whether we could have a scan for check-up purposes.

Now I think they do. I just found out (by accident) something about the arrangements/agreements my insurance and the hospital where I have my check-ups have and I don't like it. I feel like an idiot.

Take care soccer,
TereB

vinny59's picture
vinny59
Posts: 1030
Joined: Nov 2006

I'am so sorry to read that your cancer has come back. You gave me good advise when I was first diagnosed with my cancer and made me feel that I wasn't alone. Your point is well taken and unfortunately I feel it is the insurance companies fault. Please take care, I will kept you in my prayers.

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Thank you for your thoughts. Nothing means more to me now than the idea that I have helped somebody else along the way.

Take care.

hipwr1
Posts: 8
Joined: Jun 2007

AMEN !! The PET scan is the "GPS God-map" for the cancer world, and everyone should have the opportunity to have as many as needed. BC/BS is a real "peach" when it comes to PET scan coverage. They don't believe even the experts, they have to have a multi-opinion, letter of need, and then they have a panel of medical professionals that determine if the PET scan was truly needed. The PET scan is radioactive sugar and cancer is drawn to this sugar (or vice versa), so to me that is a no-brainer. Everyone should have exposure to this scan.
Good Luck.

paula002's picture
paula002
Posts: 35
Joined: Apr 2007

Hello Soccerfreaks,

I just wanted to let you know that my thoughts are with you. I truly hope that everything goes well. Stay positive.
Big hug and take good care,

Paula

jkinobay's picture
jkinobay
Posts: 247
Joined: May 2007

As a recent newcomer to the CSN I got one of my first replies to my first posting from you Soccerfreaks. You made my day when you told me that I was as a cancer survivor. Prior to your context that would have scared me but coming from someone with your experience suddenly it became a relief and a cause for hope. While I too am sorry to hear that your situation has taken a questionable turn, I am praying and holding on for good news....and it will come. Meanwhile, even though I am a fairly recent cancer diagnosis, your message is LOUD AND CLEAR......WE HAVE TO BE OUR OWN HEALTHCARE ADVOCATES........and that doesn't just apply to cancer. Be well...........JKINOBAY

alm2222
Posts: 10
Joined: Apr 2007

Soccerfreaks, my heart sunk when I read your message. Please know there are a lot of us rooting for you! Please keep us posted.

Your advice is very well-taken. Thank you so much for helping the rest of us learn from your experience.

I have been seeing your posts for several months now and have gained both information and encouragement from them. Thank you. I wish you all the best.

Christmas
Posts: 92
Joined: May 2005

Soccerfreaks:
I'm also rooting for you. I am another one of your fans. We're all clueless when it comes to after cancer care. I'm relying on my doctors, not knowing what to expect and/or what comes next. Maybe they're not sure how to handle the survivors either. My doctor has been making sure that I get the proper checkups and tests. In fact, she plans for me to get a full body scan in December. I've never heard of that.

Thanks for the heads up and your concern for the rest of us.

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