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Squamous Cell carcinoma letter to sam , very agressive ??

joolivermesplay
Posts: 21
Joined: Oct 2008

We were told when my husband was diagnosed with Squamous cell that it is very agressive , and I would believe that ,I swear to you that every time I looked into his mouth , that the cancer was bigger ..It is not a cancer to fool around with , he had it in Oct 2004 in the nsoft palate , right tonsil and 1 lymph node, 35 radiation and 3 radplat , went into remission andthen it reared it's ugly head again in Aug.2008 , in his tongue and 1 tumer by the Larynx , it moves fast , but they did tell him that it was one of the easiest cancers to get rid of ...good luck ..hang in there ...Jo

JGE
Posts: 50
Joined: Mar 2009

Hello Joolivermesplay,

Pretty much the main thing driving this (and similar) boards is fear. First it is fear of surviving first round treatments and then fear of reoccurance. Would you mind telling me a little bit more about your husbands journey? Or at least whether he was a smoker/drinker or if he continued to smoke after first round treatments?

Personally, I am costantly searching for success stories, but it seems that those people don't spend much time on cancer forums. I guess after a certain amount of time you just consider yourself cured and move on! I long for that fearless feeling again. When every little thing doesn't make you think the cancer is back! About the longest survival time I have heard of is about 10 years. Frankly, that sounds good, but not great. I am 41 and would like to think that I will die at least at 85 from something other than this annoying little spot of cancer they found on my tongue. Fortunetly, treatments and successes have gotten better but unfortunetly they haven't been treating people with the current methods for long enough for me to find a person who had 30 IMRT treatments and 3 Chemo treatments and then went on to live 45 more years!

For now, it has been 5 months since the last treatment and I feel like a million bucks. But for the annoying side effects, I feel better than before. Most of the fat is gone from my body, eat better, exercise and best of all, I have a WAY better appretiation for life! I was missing it. Spending time worrying about stupid stuff. Material things and appearances and stuff like that. Now I cherish every moment with my wife and kids, friends and family. Go out to YouTube and search on Kenny Chesneys new song called "I'm Alive". It is worth a listen. (Thanks Kenny) There is just more to being alive than most people will ever realize and it took this crazy cancer for me to really realize it. Seems nuts, but there might be a silver lining here.

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

I think you could interview 1000 HNC-SCC patients and come up with 1000 different scenarios in terms of what worked/didn't work, how aggresive/non-aggresive their cancer was, what the average survival time or remissions period was, how well they responded/tolerated treatments, etc. All that to say each of us is so very different-------I know, the understatement of the Decade.

As for success stories I personally know of a few people beyond the 20 year mark. And they went through treatment/surgery options long before the refined technologies of today. So, whenever you feel a little down about the possibility of a re-occurence, remind yourself that close monitoring, early detection and advanced medicines and treatment protocols could very likely get you to 85. And of course it is more and more likely that you may not have a re-occurence. Simply put, as my wife/caregiver/coach reminds me........if your mind starts drifting towards negative thoughts, just don't go there. Re-direct to the things that keep you going. From the sound of your last paragraph you definately are on the right track in terms of thankfullness and optimism.

In my particular case I am now almost 2 years post-diagnosis and 18 months post-treatments and am still cancer free. Mine was tied to HPV16 though which they say greatly increased the odds of success.

Hang in there, and God Bless

parkrowj
Posts: 3
Joined: Nov 2001

My original diagnoses was 1999. Four operations at Johns Hopkins and three trips out of the country for oxygen based therapies. Refused radiation and have taken insulin potentiation therapy, which is a way of doing chemo. Have now been free of any cancer for over three years. Began in '99 with SCC, neck and base of tongue, stage 4. Living a normal life. Any patient interested can contact me directly parkrowj@aol.com. I am hardly ever on web sites.

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

JGE, I agree with you that long-term surivors are apt to move on from this site at some point. In fact, I consider it a sign of success when they do so: they are no longer consumed by the disease, as I read it.

However, if you look at the home pages for some of the folks, and even, in my case, the accmpanying blog, you might find some inspiration there, as many who have left have also left their stories. Just an idea.

A lady named TereB is 22 years into her 'success story'; a guy named SASH is in his 9th year post treatment. These are but two that come immediately to mind. Me, I had surgery in October of 05 and rads and chemo into January of 06, and was given the "all clear" again just last week.

I try to approach all of this with what I think of as hope and humor, and like to advise people that we should never let the cancer take more than it is designed to get. It sounds as though you know what I mean and agree.

Best wishes for a long and cancer-free life :).

Take care,

Joe

josie_5
Posts: 6
Joined: Aug 2007

how do u know when it is safe to remove the tube? Josie

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

jo, I would say that when you are no longer using it for nutrition at all, while maintaining a healthy weight, then you are good to go in that regard, unless you and/or your doctors anticipate future treatment that might also affect your ability to eat.

As always, though, you should bring this up with your doctors. And, of course, DO NOT try to take it out on your own. I only say that because it has crossed my mind from time to time. If you have the same kind I do, it is a painless procedure to have them remove it (I have had two of them fall out already, in fact, and only noticed when I woke up in the morning). They will manage the wound site, which is what it is, much more expertly than you would following removal, in most cases, avoiding unnecessary infections and so forth.

Best wishes.

Take care,

Joe

JGE
Posts: 50
Joined: Mar 2009

Thanks for the responses.

Hard part really is coming to grips with the idea of never knowing how or why it happened. Seems impossible to believe that there isn't something I should add or leave out of my diet that would make a difference. I have asked repeatedly about eliminating red meat, occasional alcohol, fried foods and things like that. They all say that it won't/wouldn't make a difference. Besides that, I can't get them to commit to any vitamin or mineral supplements that could help to avoid reoccurrence. Nothing from any of my doctors.

Some things are obvious. Cutting down on fatty foods, adding more vegetables, more fiber and stuff like that. But I can't believe that I went through all of that treatment hell just to go right back to my old ways and believe that the cancer was just a freak thing and I should just be glad I beat it!

So, it is true that I have come a long way from the intense amount of depression I felt during and after treatments but it would be much easier if I could say "this is what caused it" and " I don't do that anymore". Makes recovery more difficult for sure. Especially psychological recovery. Somehow though with each passing day I get further from the worry and closer to believing that I will live for many more years to come. People stop treating you like a cancer patient. It stops being the ONLY thing everyone talks to you about. And you start to gain strength from knowing that you now have a superior recognition of the value of life. Your own life AND the lives of the people around you.

For all the people currently in treatment and the ones that have recently finished, I can only tell you that you have a lot to work for. Once you get over the hump and get a taste of the life you left (although it is forever changed) you will be amazed at how quickly you can start to believe that SCCHN is not an automatic death sentence. In fact, it may actually be an invitation to life!

JGE
Posts: 50
Joined: Mar 2009

Went to a party over the weekend for a friend getting married. Same old story, everyone you haven't seen in a while waits for an opportunity and then asks you... "how are you feeling?" and gives you that look. Then you realize that even if you start to forget about Squamous and the hell it put you thru, everyone else is right there to remind you that you are still "the guy that has/had cancer"!

Makes you dread parties. I really enjoy the days that I almost don't even think about it. I would LOVE to forget it! Never be able to do that. But man, I wish there was some way to erase it from everyone ELSE's memory!!

Gheesh.

It's still the same old me in this skinny body. I don't want to be someone else.

P.S. - It might not sound like it in this post, but I am actually getting along very well and can really embrace the idea of the cancer being gone and never coming back. In fact, I want ALL the "cancers" in my life to be gone and just leave the good.

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

Now you ARE one!

Congratulations.

Take care,

Joe

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