Life is for an unknown period of time, but it does have a known outcome. Whether to have cancer treatment or not is you decision, but please make it an informed decision. You need to consider the flip side of the potentially gruesome, painful, disfiguring side of not being treated.
Invasive, Squamous Cell Carcinoma Questions
What if none of the options are options?
Asked by Myturn on Tuesday, February 5, 2013
What if none of the options are options?
I started to feel sick in September and my lymph node appeared in mid-November. The lymph node fine needle biopsy came back positive. They took a tonsil biopsy. It came back negative. They sent a sample to Mayo and took the node. Both came back positive. Just found out late last week. Scheduling second opinion and trying to find a shrink.
I'm one of those guys who thinks that a case of the flu is really bad. Taking a lady friend to E.R. with a thumb injury put me in the parking lot, puking, when she got in. I know that I cannot handle the gruesome, painful, disfiguring, surgery, chemo, radiation, or any combination, for an unknown period of time and an unknown outcome.
While the doctors have been fiddling around, I have done some things that have improved my symptoms. Most are gone. I do not fear death, but I fear treatment more than anything that I have ever feared. I have a few family members and friends. My fiance' would hurt, but she may hurt more from treatment, too
17 Answers from the Community
Thanks. I will. That is part of the question. It is a part that has multiple answers.
So far, my treatment options are nowhere near what we would do to save the life of an animal. Not that some folks wouldn't try, nobody would do it. Losing half of my mouth and neck to an unknown outcome seems barbaric to me.
One doctor told me that if left untreated it could get nasty and cause problems. I suppose that would depend on how fast this type of cancer moves along. I think that I have the beginnings of cachexia and between that and Hospice, I could wither away before the cancer gets bad.
I was clearing land to build a log cabin. Would never happen now. I fish the Great Lakes for trout and salmon. Probably never be strong enough for that again. It's hard now. I cut my own trees for winter heat. Not any more. My job would be gone. I don't think that I would be happy with what was left. If they just wanted an arm or a leg, I could deal with that. I would wake up from the pain and suffering to a world that I didn't know. A world that I don't know I would like in my new "condition". A world where I could only watch the things that I did. A world with the fear that what you just went through will be back.
Hugs. Now take a deep breath, and try to calm down. Treatment can be painful and exhausting, but it is very life affirming. Stop worrying about how you will react, you are a strong person, you just have been hiding that strength from yourself. To be honest I do not find my treatments very painful, frustrating, exhausting,boring all come to mind first. I've had surgery (nephectomy & lumpectomy), radiation , and both oral and IV chemo. Yes post surgery is no walk in the woods, but the pain passes.
I think finding a shrink that specializes in treating cancer patients is a great idea, ask you Oncology team for a referral.
Unfortunately, this stuff is in my neck. So, they can surgically remove dozens of lymph nodes, tonsils, part of tongue, some muscle . . . And/or chemo/radiation. During the process the throat is burned so badly that you cannot swallow water, so you have a feeding tube and you squeeze the food into your stomach. Then they give you chemo treatments and you get to throw up hydrochloric acid across your burned throat tissue that cannot accept water.
It sounds bad to me. Then, of course, there is everything else that comes along with it.
"What is the prognosis with treatment?"
Often oral cancer is only discovered when the cancer has metastasized to another location, most likely the lymph nodes of the neck. Prognosis at this stage of discovery is significantly worse than when it is caught in a localized intra oral area. Besides the metastasis, at these later stages, the primary tumor has had time to invade deep into local structures. Oral cancer is particularly dangerous because in its early stages it may not be noticed by the patient, as it can frequently prosper without producing pain or symptoms they might readily recognize, and because it has a high risk of producing second, primary tumors. This means that patients who survive a first encounter with the disease, have up to a 20 times higher risk of developing a second cancer. This heightened risk factor can last for 5 to 10 years after the first occurrence. There are several types of oral cancers, but around 90% are squamous cell carcinomas.
If it's any help to you, let me tell you about my experience with a malignant tonsil 4.5 years ago. Along with 2 malignant lymph nodes, Metastasis, attached to my muscles in my neck. Had tonsilectomy to remove the tonsil, along with a 3" circle around it. The idea was that I would not be able to have treatment, since I've already had radiation in the area 24 years ago for hodgkins disease. So the surgeons wanted to get it with surgery only. I had a secon surgery to remove the lymph nodes in my right neck, along with 27 more lymph nodes. I was told I might not be able to move my right arm because the lymph node in my neck had attached to the muscle. I was told that my right side of my face might be drawn like I have had a stroke, because the nerves had to be moved to get the nodes. I was told I would have to have a feeding tube because the surgery was going to be so bad on my throat I wouldn't be able to swallow. I was told a lot of things. I read a lot of things on the internet, most of it negative.
This is what happened. I had the first surgery to take out the tonsil. Tough surgery, but recovered in about 3 weeks. Second surgery a month later to do radical neck disection. That surgery was extremely tough, took me a month to get over, had to sleep sitting up in a chair for 3 weeks. But I told them no feeding tube, I would be fine, they said I would probably get one anyway. I didn't, woke up from the surgery, right arm worked just fine, right side of face not drawn down, no feeding tube, recovered and started Radiation treatment. Treatment burned the side of my neck so bad it looked like I was in a fire. Lost my voice for a month, couldn't speak a word. Couldn't hardly eat anything since the throat was so sore, mouth sores, it sucked, it was awful.
4.5 years later, I am doing the same work I did before I found the lump, I am not disfigured, allthough I aint' as pretty as I used to be, I have gained all the weight back that I lost during treatment, plus another 20 that I don't need. I get to wake up every morning and kiss my wife, pet my dog, and smack the cat. I get on my bike and ride in the breeze when I want. All of these things I would not be doing if I just decided to let i run it's course.
My Mom and Dad both had no choice but to let it "run it's course", dad lasted 3 months, mom lasted 8 months. I might drop dead tomorrow, but I have had 4.5 years I wouldn't have had.
Yes treatment is tough, it sucks, it's no fun, but sign me up, I'm ready to go get some more.
I wish you the best in your decision, only you can make it, but don't go into it with only information you find on the web, when most of that is outdated statistics and not from a person that has been there, I've been there, and so have several others here. Some for as many as 9 times, and still here laughing at cancer.
Don't give in, don't quit, give it XXX, give it something, give it anything, but up!
As a woman diagnosed with breast cancer and having both breasts removed, I can tell you that I was terrified of being disfigured. Our breasts are part of what makes us feminine. I thought I would be deformed and no one would ever want to look at me again. I am a single young woman and wondered if any man would ever want to be with me, as I have scars on my nippleless breasts. I had chemo and lost my hair. I gained weight I didn't need. I was miserable and exhausted. I needed another surgery on my left breast and will need at least one more. The chemo ate through the cartiledge of my knee and I will need knee replacement surgery.
However, I would not change any of my decisions. Could I have let my cancer just run its course? Absolutely. Will I die from this cancer? Maybe. But I also might get run over by a truck tomorrow.
Both my parents died of cancer. My father within 3 weeks of diagnosis and my mother within 5 weeks of diagnosis. I made the decision to live as long as I possibly could, breasts or no breasts.
Cancer is not a sprint. It is a marathon.
I see a therapist every other week. I take an anti anxiety medication. I go to a support group monthly. And I go to work and I live. Get busy living or get busy dying. I am busy living.
Of course, you are the only one who can make your decision, but remember, everyone is different. Everyone's cancer is different and everyone's outcome is different.
Just remember that everyone here had to face the same thing you're looking at, just some difference of stages. And none of it was fun, we can tell you that. But it wasn't as bad as i thought it would be. But by now I'm sure a lot of it has passed my mind. Don't get discouraged! Keep focused on what you're going to do after it's all over. And keep us all informed. We want good reports.
Sometimes the doctor in front of you doesn't have the best answer. I would ask for a referral and see a specialist at another clinic that has treated a large number of this type of case. My ortho surgeon gave me a devastating prognosis and outcome. When pushed for a referral, we ended up with a doctor that provided a different answer and hope.
"You can probably get through this with surgery, alone."
That's a BIG F'n difference! Where did the guy get big enough nads to tell me that I wouldn't live until Christmas without radiation and chemo? He will be lucky if I don't see him on the street! He would welcome chemo and radiation when I got done with him.
So, now I get the option of taking my tonsils and a "chain" of lymph nodes. Then, I can decide what I want to do after the pathologist does his job.
This surgeon knew that I was considering refusing treatment, so I don't believe that they won't suggest radiation after surgery. But, if the doctors at the last place had handled the situation this way, I wouldn't have been put through two months of believing that I HAD to face radiation and chemo or die before Christmas. This surgeon said that they wouldn't consider chemo at all. WTF???? I can't wait for the "How did we do?" cards to start coming!
Another troubling fact about the last place:
The surgeon who took the tonsil biopsy wrote the procedure up so that the chemo oncologist believed that he took the whole tonsil. It must have been a large biopsy, or the oncologist hadn't seen many tonsils. He still believed that the whole thing was gone. I think that the surgeon corrected his paperwork after I scolded him, but he refused to say that he did anything wrong. When the BCBS paperwork came, the procedure billed is exactly:
"Removal of tonsils", yes plural (maybe it's a generic procedure code, but I doubt it). I think that is called insurance fraud on top of medical "mispractice".
Sure, I believe that the medical community is full of competent folks who only have my best interest at heart. :)
Most of what I have seen is a broken system. I have good insurance and I have been getting poor health care. It is what I have seen in the past (one unnecessary operation after two bad tests) and if I wasn't my own patient advocate I would be getting doses of two chemotherapy drugs that I probably didn't ever need and they were scheduled before two biopsy results were complete.
Be careful of where you go for health care, especially in mid-Michigan.
The doctor who invented the radiation/chemotherapy treatment for head/neck cancer is out of Boston. I can find out his name if you like and want to see him. If the docs can get ALL the cancer through surgery, there is no need for other protocols. If they can kill the cancer cells with radiation, there is no need for chemotherapy. If chemotherapy will poison all the cancer, the docs won't need to use the other methodologies.
Thing is that the docs are kinda working in the blind so they do everything they can to kill the cancer, stopping just short (they hope) of killing you so that you and Mom Nature can mop up what is left.
I have two friends who have had head/neck cancer (squamous cell). Within four years, each is back at a semblance of his regular life.
If you are adamant about not wanting conventional treatment, find something else. Don't just give up and go.
There are (pricey) alternative health institutes which have pretty good stats at stopping (some) cancer in its tracks. Look up Optimum Wellness (San Diego and Austin), and the Hippocrates Health Institute (WPB, FL & Puerto Rico) and the Living Health Institute in Atlanta. They help you to radically change your diet and lifestyle and save some people in the process. There is a guy up in New Jersey who swears by apricot kernels. Some adore chaga. There is always more than one way to skin a cat, so to speak.
Have you ever heard of wheatgrass? Would you be willing to abandon meat in favor of one legged animals? Are you ready to buy a juicer? To do strange exercises and meditations?
Very good luck to you.
Thank you, geekling.
"Have you ever heard of wheatgrass? Would you be willing to abandon meat in favor of one legged animals? Are you ready to buy a juicer? To do strange exercises and meditations?"
I'm breaking in my Nutribullet. If I knew that giving up meat would help, I'd do it. I don't eat much now, anyway.
If you call cutting down enough trees and hauling, stacking, splitting . . . "strange exercise", that's how I heat my house and water. I get close to meditation fishing for salmon and trout on Lake Michigan.
"Thing is that the docs are kinda working in the blind"
That's really the problem. I had a heart cath for no reason other than they wanted me on statins and two bad tests made me an open heart surgery candidate. They couldn't find any blockage. They gave me hypertension medication for 20 years and told me that I would die from an enlarged heart because my blood pressure was uncontrollable. They refused to work with me, so I tried anti-anxiety medication and cured it. Still on it 14 years later. They wouldn't prescribe because of addiction, but would give me pills that did nothing for 20 years.
The wide difference in treatment procedures makes me question both, in this case. I'll take the radical surgery and temporary pain, but I can't get to the point where I use a carcinogen to "cure" my cancer.
Thank you for the references. I will take a look at them.
I went through with a radical tonsillectomy and neck dissection at U of M. There was a chance that surgery alone could cure this, after all. It did! A small tumor was confined to the tonsil and none of the lymph nodes tested positive!
Thanks to everyone here for your positive thoughts and experiences. Our broken medical system put me through months of XXX for no reason. If I had not found an excellent Professor at U of M, who knew his job, I'd be suffering from two types of chemo poison and radiation poison, right now. Surgery was no walk in the park, but it was cruel to tell me that I was going to have to take chemo and radiation or die by Christmas, when they simply had to do some surgery. The oncologist should lose his license and his teeth!
I cannot help but to believe that greed has a lot to do with this. Chemo and radiation treatments would have made the hospital hundreds of thousands of dollars. Why wouldn't it be their standard treatment? The only way that I got a surgery only option was to refuse chemo and radiation. That is backward. Their last resort should be chemo and radiation because both are known carcinogens.
Be your own patient advocate and don't believe anything the doctors tell you! If you don't like the second opinion, get a third. I started an alternative treatment for the few months that it took for the doctors to get around to my final operation. It may have slowed the progress of the cancer for those months and helped me get away with surgery alone.
You might be surprised at your own reactions to the treatment. Some people do not have the misery that others do, all of the surgeries are not disfiguring by the way. I had the da Vinci robotic surgery, and went home the following day.
Try to get additional information on the treatment options, and believe me you CAN get through them. You will be surprised at your own inner strength that will appear rom nowhere. Don't just give up, go ahead and seek the treatment, I was stage 4 with the same thing, tumors in the lymph nodes and a super small one at the base of the tonsil.
I am two years out of treatment now, and doing great! I do have a couple of side effects, the biggest one is that I am ALIVE,
Don't give up, fight for your life!!!
Best wishes for a speedy recovery!
What are your other "side effects"? I was told that I would not see this Christmas without two types of chemo and radiation. I told them to shove their chemo and radiation and had surgery at another hospital. They want to screen me next spring now.
I have a XXX shoulder, but it beats being dead or still on a feeding tube.
Did surgery alone "cure" your cancer? If not, what has "treatment" taken from you?