Hey All
Radiation or No Radiation???

I just finished surgery for a second bout with SSC (left lateral side this time). I'm posed with the decision of going through radiation treatments or taking my chances just riding out what is left. I've been through the wringer the past 25 years (bone marrow transplant for leukemia) so I'm no stranger to fighting,enduring and suffering. Radiation was my worst case scenario facing me. I'm familiar with mouth sores, thick mucous and scleradermal jaw locking. I've been able to keep my teeth despite a moderately several case of dry mouth for 25 years. I asked my radiation oncologist about side effects during and post treatment and he ventured to say that the possibility of them being worse for me is more likely due to my current health status.

I'm 56 years old have and have good support. Friends and family accept any decision I make.I'm just looking for others experience (I know everyone is different). As I see my position now, I have worked hard to get my speech and eating going post 2nd surgery and it's hard to imagine losing all that traction just to be a lower starting point. Quality of life vs suffering is in question.

Welcome to OCF, Jeff! Im sorry to read about your long history of dealing with major medical issues!

The best thing you can do is to go for another opinion. preferably at one of the Comprehensive Cancer Centers (CCC's). In your signature you wrote "radiation strongly recommended".. That tells me your doctor feels the surgery alone is not enough to eliminate the cancer. If the doc wasnt able to get clean margins with your recent surgery, all it takes is one teeny-tiny cell and you are looking at being diagnosed for a third time with oral cancer (OC). If you arent sure if your doc was able to get clean margins, I suggest asking as that could be why they are "strongly recommending rads".. There must be something they see or know that brings them to advise rads. As a group of OC survivors/patients and caregivers we do not have the professional education, clinical hands on experience to be able to give an accurate assessment of what option is best. Plus without the entire medical history, having the patient there to examine and ask clarifying questions of (not that those things would help anyone who is not a medical professional) we couldnt even make educated comments on what treatment plan is best for you. When in doubt its always best to go to the source for help.

Rads for most are NO walk in the park. Its not easy but it is doable. While I do completely understand and respect your wishes, I also know another side of things that causes me to think differently about your situation. Most doctors dont fully understand what Im going to write even if they've treated patients in similar situations its just not possible to fully get what its like being the patient thats living the nightmare. Im one of the very few OC patients who has survived their 3rd round of OC beating the odds when the deck was stacked against me. I'll explain in more detail whats behind the advice Im giving you. I apologize in advance if Im a bit long winded, theres over 10 years to tell you about. Am I the same as before... heck NO!!!, not even close. But, I wouldnt trade the new reconfigured Christine for anything. The recovery for removing half of my lower jaw to eliminate the cancer for good was a very long difficult road. It took me well over a year to get back on my feet after such an invasive surgery that had many complications. If I had not continued with being treated for the 3rd round of OC, I would have suffered greatly before passing away 10 years ago. We are about the same age... in the past 10 years Ive been there for so many of life's major milestones which have given my life such an incredible meaning. Seeing both of my children happily married to their awesome spouses and my biggest joy of being there for my 7 grandchildren who have arrived since that life-changing surgery. I never in my wildest dreams could have imagined what a huge difference and just how important a teeny tiny baby would become in my life! As a single mother raising 2 children by myself, my life was NOT an easy one. I worked very hard to give my children the very best lives I could while loving them with all my heart. Grandchildren are different story!!! I do not have the weight of the world on my shoulders to raise them, when I get worn out from playing too much I can send them home to their parents and I can spoil them rotten with so much love and attention. When my first grandchild Savannah was born in 2014, I worried she would be afraid of me.

That third round of OC left me disfigured... and not just a tiny surgery scar either, the complications I had required a second mandibulectomy to be done almost immediately after the first one on Aug 24, 2009. Back then, I first chose to refuse all treatments. I thought if I was going to go thru such heck only to pass away anyway I should just live out the rest of my days preparing my teenaged children for a life without me. They were definitely not mature enough to be on their own which scared the heck out of me!!! I spoke to OCFs founder Brian Hill who truthfully answered my most important question at that time .... "How many 3 time OC survivors do you know?" His answer was encouraging but also told me so much and what I really was up against. He said "I know thousands of OC survivors and thousands of their widows for the ones who didnt make it thru. There are some 3-timers out there but not very many. If anyone could get thru it I would say that person was you!" Those words of guidance and the great many new friends from all over the world Id made here convinced me to see the big picture. Their logic of you cant beat something if you quit before trying made alot of sense to me. I realized I was feeling like everything was out of my control just like most patients at some point when they're dealing with a potential life threatening disease. Long story short... I finally agreed to get treated, went thru 2 months of absolute hell, too many surgeries to count, stuck living in the burn unit, ICU and finally the regular section of the hospital where my son helped me relearn how to walk, several doctors appointments a week plus visiting nurses for my 8 months of 2x a day picc line antibiotics along with frequently seeing wound and infectious disease specialists, many more surgeries plus I never regained my ability to swallow or eat 99.9% of most regular foods so I too have a feeding tube for life. Those are just a few hurdles I encountered and survived theres many more but after being so sick for so long those minor things dont phase me any longer. Since those difficult days Ive become much more resilient where I now get my biopsies done with being put to sleep or numbed up, its far easier for me to just let the doc snip a tiny piece of something and luckily Ive had a great many negative biopsies since 2009 and every 2-3 months I get my feeding tube exchanged without being numbed. While Im fully awake, Ive learned to endure a few uncomfortable minutes of pain being on the outpatient surgical table and Im good as new walking back out the door with a brand new tube. Its amazing what anyone can get used to when its necessary. So now you have learned far more about me than I intended to write so you know where Im coming from. I may not have a formal medical degree or background but instead as the patient Ive learned a great many things simply from dealing with OC for 13 years, from Brian Hill and what others here have shared.


Since you have been down this road before plus have had many years of other health problems, your case is a complicated one. I suggest seeking out a CCC for at the very least a second opinion. The countrys top cancer facilities the CCCs are listed in the link below. The top doctors who have the most experience in complex cases like yours are at CCCs. They use a team based approach so all the specialists are on the same page. Someone here recently shared the #1 or #2 CCC in the US, MDAnderson now does online 2nd opinions from reading a patients full medical history. Even if you are currently being seen at a CCC, I still advise you to seek another CCC opinion. When making such difficult decisions that greatly impact your life you ALWAYS should see at least one more highly experienced doctor before signing off and giving up. No, rads is NOT easy BUT the better you do with your intake when going thru rads, the easier it will be. We see all the time people beat the odds, attain things well out of reach and go on to lead full, productive lives. I speak from experience of living thru 3 rounds of OC, becoming disfigured which gives its own challenges and gives "being different" a new meaning and went thru (and still do) more "bad days" not feeling well than I care to admit to and too many other things to bother listing but I wouldnt trade a single day for anything. Even with the many challenges I face every day, I would still make the same choices...I have not a single regret and do my best to make a difference in other peoples lives every day. So Im one of the people who does support you but I also am hoping you will consider what Ive written and although life has no guarantees you will seek out a second opinion to hear what they say. Please dont delay too long as the sooner something is taken care of the sooner you can get back to living your good life again. Dont let the feeling of everything being out of your control be what is the deciding factor in refusing rads to somehow feel like in saying NO you are in control of an uncontrollable situation. Its NOT easy to die from OC, patients go thru significant pain and suffering. Ive held the hands of dying OC patients as they were passing on and those poor souls I think of every single day. When it becomes too late to seek additional treatment is normally when patients start to change their perspective on their decision but theres no going back. The time for rads has come and gone. Sure you could be one of the very, VERY few who do not need rads but missing one teeny tiny cell is all it takes for OC to come back and often it comes back with a vengeance, moving much faster than it had previously. Then on top of everything else, its very common for OC survivors to have depression and anxiety from going thru so much. Many will take anxiety meds and see therapists to help them deal with the mental aspect of OC. Too often patients are so quick to say "no, I dont need that!" but a therapist would be a tremendous help as they understand what being forced to face your own mortality is like and how to best help someone going thru it. That may be something else you can consider, no matter what your decisions are Im sure they can be a big help. At least give it a couple visits to try it out before just saying no like we all tend to do. Just like the good old days of going into a mall store and a sales clerk asks "can I help you?"... we ALWAYS say "NO thank you" even when we need help we still say no.

Please just consider what Ive written!!! I have a special place in my heart for all of our new members who join OCF. I do the very best I can to help educate them and guide them to make their own best choices. In the end its completely up to you and everyone here will respect your decision and support you as best we can. We really do care about every OC patient and caregiver. We have a very special bond we all share together that comes from enduring the same horrible illness, treatments, long recoveries and all those dreaded side effects.

Im wishing you all the best with everything!!! Please keep posting and we will try to help with whatever we can do.