My husband 73 years old. had Surgery for oral cancer of cheek, Complete excision, Flap graft from Arm to mouth and then skin graft to Arm from thigh. Negative margins and lymph nodes. We were told to undergo 30-32 Radiation therapy treatments but he does not wish to go through that. I am extremely worried. Can anyone share their experience of this, He feels he can not go through because of pain and permanent side effects

Welcome to OCF, devin! Im so sorry to read about what you and your husband are going thru! Being a caregiver is a very difficult job!!! Its not easy watching the person you love the most go thru so much while you keep a smile on your face and are being positive no matter how you really feel. Please make sure you take some time just for you where you can clear your head and think, do something you enjoy, talk with friends and/or family or anything else that you want. Your post was not an easy one to respond to, I will be 100% honest with the info I am passing along.

I understand your concern for your husband with his refusal of rads. Im sure the surgery was not easy on him! However, with the doctors unable to get clean margins and knowing the cancer cells are in some lymph nodes, further treatment is necessary to eliminate all the cancer. Many patients do not want to go thru rads. I sure didnt want to either!!! But since Im without medical training or a medical degree, I knew my doctors were advising me what is the best way to survive. From what you wrote, the surgeon was not able to get all the cancer so it sounds like it will continue to grow unless its stopped. Please understand, our OCF forum is made up of oral cancer (OC) patients and caregivers... not medical professionals. Unfortunately our knowledge is from going thru things first hand so its not easy to explain what may happen with your husband without further treatment with rads. Plus, being without the many years of medical school, clinical patient experience, examining your husband, knowing his full medical history (not that we would really understand it anyway) to name a few things makes our members unable to diagnose or advise what should be done next for any patient. If you have not taken your husband for a second opinion, I would highly recommend you do so right away. Time is very important with this situation as the longer it takes to get into rads, the harder it will be to treat. I definitely recommend at the very least a second, or even third opinion preferably at a comprehensive cancer center (CCC). Sometimes hearing from another doctor is what it takes to get a patient to do whats best for them. Without further treatment patients whose surgery wasnt with clean margins and their lymph nodes contain cancer, refusing further treatment will allow the cancer to continue to grow until it is not able to be treated. Im sure the surgery your husband had was painful and not easy to get thru but without rads it was all for nothing.

Ive been part of this community for 12 years and seen every situation there is. Ive seen patients refuse rads and unfortunately they do not survive. Not every patient experiences every side effect or has a hard time doing rads. Especially those patients who are doing 30 or 32 treatments. Theres about 10% of OC patients who go thru rads who sail right thru it with barely noticing any side effects at all. Some of those lucky patients are able to go about their regular lives with only making a few minor changes until they make a full recovery. As far as having permanent, life-long problems that are caused by rads, not every patient has that either. The patients who dont get chemo also usually have a much easier time doing rads. If your husband can maintain his daily intake of at least 2500 calories and 48-64 oz of water every single day, then he may be one of those lucky ones who dont notice the side effects.

Maybe this will help your husband to see his situation a different way..... Several years ago when I was diagnosed a third time in 3 consecutive years with OC, this time being Stage IV, I tried to refuse any further treatment. I spoke with OCFs founder, Brian Hill who answered my very difficult questions. Bottom line I wanted to know if he personally knew off the top of his head anyone who had survived 3 diagnosis of OC. Even though Brian who at the time hadnt known how heavily I weighed his input, he answered every one of my questions honestly and encouraged me to continue to seek a curative treatment. After much nagging from my OCF friends, I finally could see the big picture. If I quit before even attempting to get thru another bout of OC then I was giving up without making any kind of effort at all. Bottom line was I couldnt quit before I tried to get thru it. Thankfully even with many major complications and a 2 month hospital stay, Im still here 10 years later! Im letting you know all this to share with your husband, he is NOT alone in not wanting any further treatments. Rads is definitely NOT easy on most of us but I have seen many members in their 70s go thru rads successfully and have many happy, healthy years afterwards.

If your husband will agree, talking with a therapist may be the help he needs to see the big picture. Many OC patients benefit from talking with someone who understands what cancer patients go thru mentally. Its NOT easy!!! Its almost like coming to terms with the death of someone close. Depression is very common among OC patients, a therapist may be very helpful to your husband. It certainly cant hurt! Many OC patients need even more help and temporarily take anxiety meds. Its not just the OC patients either, many caregivers need this as well. Unfortunately theres too many overly stubborn patients who refuse to see a therapist but their caregivers have gone and it has been a great help to them in how best to deal with their patient. Im letting you know this is available and might be something that would help you even if your husband doesnt want to go. Never know, it could help.

No matter what decision is made to continue care or not, we're here to support you both and will always respect your and your husbands choices. Heres more info about OC to read from the main OCF site. Maybe if your husband did some research and learned more about OC, he would make a different decision. At least by reading thru the info contained he will be making a more informed decision.....

Main OCF Site, Understanding Oral Cancer

Best wishes to you both!!!

I'm not sure if my input would help since I didn't have to go through as much as he is being asked to go through, but a friend of mine from church had similar experiences at a similar age. I didn't know him well before my cancer because of our age difference, but folks contrived to get us introduced after, to help lift my spirits. (It worked, but not as they expected ... it turned out he'd served with my late father and that was very precious to me.) Anyway, he went through more procedures than I had ever heard of (outside my further readings in this forum!) and he kept on keeping on. He admitted that it did change his quality of life, but he preferred it to giving up altogether. It's a very personal choice, but for him, at least, it was something worth fighting for.

That said, if someone DOES choose to keep on trying treatments ... make sure that there's someone advocating for supportive care ... pain medications, anxiety medications, fresh hobbies, tasty foods (very subjective) ... whatever it takes to make it worth getting up each morning and facing each day. The little things become the big things. That's true no matter what treatment level, but the bigger, the more important. (I spent fortunes on audiobooks and a game website, but it did help pass the time when my brain was functional enough to care.)

((hugs)) to you both! And make sure there's care for you too!

My dad went through this last year. He's 64. He had to have radiation and chemo because his tumor affected his bone. Dad did 30 rads treatments. He needed some opiod pain control toward the end and for a month or so afterward, but was able to make it through without a feeding tube. It is difficult, for sure. The doctors know that, and are pretty good at anticipating what you'll need before you need it, and at managing the side effects and pain. Though it is risky and painful and difficult, we chose to do it anyway because it was our best chance to beat cancer and to avoid more invasive or radical surgery.

Hello! I'm so very sorry for this difficult dilemma you're in. This is definitely quite the curveball thrown at you in this game of life.

I don't have a lot to add other than, rads are different for everyone! I am post 33 rad treatments now 3 months and I wouldn't even say that I have dry mouth. I'd say I have 70% of my saliva vs. 100% prior to rads. I eat my burgers and sandwiches WITH the bread and really don't have a negative eating experience from it. Now, you do lose your sense of taste for a length of time and I fully expect him to experience SOME side effects. I also did have my mouth kind of slough off its layer about 2/3 of the way through rads. That was over in a few days and no other mouth sores or issues prior to that or after. I have had a very stiff neck and jaw and I have pt twice a week to keep those muscles good and flexible and let me tell you, they are NOT a downside because it feels heavenly! I am still on a low dose of oxycodone because I do have some residual throat/ear pain that they believe is damage from radiation to a nerve in my throat that just needs more time to heal. And that right there is the extent of my rads negative effects. That may sound like a lot but it's really not. All of it has been very manageable because I have been on opioids to be kept comfortable throughout the entire process. My point is, we are all different and rads may not turn out to be the big scary monster that people warn you that it will be.

Good luck to you and your husband during this difficult time and please keep us updated!

my husband had 35 radiation treatments, 3 chemo this past year. he said even today, that feeding tube was the worse part. he barely took pain meds through radiation which i know is rare but it's possible it might not be as bad as your husband expects. he won't know unless he tries.

hugs to you Devin.