Newby to group, not to cancer
I have recently been diagnosed with squamous cell carcinoma. They found a tumor on my left tonsil spread to adjacent lymph nodes. Lymph nodes I know from. I have been fighting Non-Hodgkin's Lymphoma since 1995. When we found the enlarged nodes in my left neck, we expected to find isolated lymphoma. Instead, even the doctor was stunned to find something completely different. So now I have a brand new shiny care team with different specialties. My first cetuximab infusion is next week. Radiation begins the following week. I am scared to death and really don't want to go through with it. When I was diagnosed with lymphoma, I was 36 years old; now I'm 58. Then I had no other conditions except arthritis and chronic depression. Now I have diabetes and congestive heart failure on top of the arthritis and depression. I just don't think I have the strength. But I'm too polite to dig my heels in and scream, "Stop! I don't want to do this!" Besides, my kids (3 adult) would never forgive me. Not to mention my boyfriend. So far, all I've had done to me is dental surgery where they removed all my back teeth in preparation for radiation. My teeth were wrecked by a stem cell transplant in 1998 and years of not being able to afford dental care. I am sick and perpetually tired, and I was those things long before I found out I really was sick and had reasons for fatigue. Seeing the tumor on my tonsil was reassuring. I finally had proof that I had a reason for not feeling well. I was also glad to find that the cancer wasn't in my esophagus.
This is pretty rambly, I know. Forgive me for not being quite coherent. Looking for advice, commiseration, virtual hugs, what have you. Thanks
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beakmom,
You're not rambly or incoherent at all. I'm Carol, a moderator here. Letting a tumor grow unchecked on a tonsil is not something you want to do. I understand your apprehension and that you're tired of going through all that's happened health wise. There are some different drugs now than there were 21 years ago. Radiation to a small area will cause side effects locally. You can decide to try the treatment and stop if it's causing too many problems. You may tolerate it better than you think you will.
Carol
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1 ReactionHi beakmom,
I went through treatment for squamous cell cancer of the base of tongue last year. I will not sugar-coat it- it wasn't easy. But I made it through and am so happy to be able to say that now, 14 months after my last treatment, I am feeling absolutely fabulous. I still have a few after-effects, most notably the loss of salivary glands and the accompanying dry mouth, but these are all quite tolerable, especially considering the alternative. My advice is to just put on your blinders and just go for it. Stay focused on getting through and on being super kind & caring towards yourself throughout. You WILL get through it and you will be cancer-free. One of the "good" things about this type of cancer and its treatment is that modern advancements in technique have rendered the treatments quite successful and after about 5 years with NED, you have the same risk of its recurring as someone who never had it. Pretty good odds, I say! But to get there, you'll have to go through a bit of fire (literally). Oh yes...and a ton of virtual hugs to you!!!!! We're with you on this! (((((((((((((( 😀 )))))))))))))
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1 ReactionMarinS,
I hit the heart (LIKE) after your response about 10 times for that response. One thing I can't do as a moderator here is relay info about how I got through it. Your response is so positive!
Carol
Thank you, Carol. I think that it's the very least that those of us who have endured these treatments and made it through can do for those just beginning. I recall googling like crazy right after I was diagnosed, looking for any reassurance that I wasn't doomed and could, in fact, actually survive this cancer. I hope that I/we can support the "newbies" and let them know that this cancer is not only survivable, but that they can look forward to a rewarding and happy life afterwards.
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2 ReactionsThank you. One question: Not to sound ignorant, but what does NED stand for?
NED is No Evidence of Disease. It's the new catch-all that can replace cancer-free, remission, or "cured" (which is really a term that shouldn't be used for cancer in general). It's the goal with cancer treatment.
Carol
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