After surgery...to do radiation/chemo or not?

5 Posts | Page(s): 1 

After surgery...to do radiation/chemo or not?

by Tracy29King on Mon Mar 11, 2019 03:08 PM

Quote | Reply

My husband just turned 58 and had surgery a month ago (Feb. 6) for tongue cancer. He had 3/4 of his tongue removed with reconstruction by plastic surgeon using skin from his leg. The tumor in his tongue showed clear margins after the surgery, from the pathology report. He also had 34 lymph nodes removed, from the right side which was the same side as the tongue tumor, and 3 showed cancer. He usually weighs a healthy 155 to 158 but had lost a lot of weight prior to surgery and was at 123 when he came home from the hospital. He had a peg tube put in one week prior to surgery and now at almost 5 weeks after surgery we have his weight back up to 141, slow but steady weight gain. We met with his surgeon last week and are very confused...as he has set up appointments for us this Wednesday with an oncologist and also a radiologist, as the standard protocal is to get 5 to 7 weeks of radiation and possibly chemo too. We asked if another MRI scan could be done at this time, prior to making a decision, and the doctor stated that it would not show any cancer as they removed it. The follow up treatment would be because their is a possibility of microscopic cancer and it is best to attack it now. Reading about the side effects of radiation, we have a huge concern with doing radiation on just the possibility of microscopic cancer. Since my husband would have to get scans every 3 months the first year and then a couple scans each year through year 5 (God be willing), my husband wants to refuse the radiation and only go through it if cancer is found again on a scan. He feels like he is getting stronger every day and does not want to go backwards. He is not going to smoke again. He is also going to continue to eat organic and cancer fighting foods - as we began a couple months back and I blend all for him. I am worried about this decision that has to be made. We would like to hear from any tongue cancer survivors and/or caregivers and get input as to what your experience was and why you chose to do radiation or not, the pros and cons. 

RE: After surgery...to do radiation/chemo or not?

by cagy2 on Thu Mar 14, 2019 04:53 PM

Quote | Reply

Well you have come to the right place today.  I had tongue cancer in 2010, I had 33 radiations and chemo once a week for 6 weeks until my creatine level went up from the chemo so I  quit chemo.  Having the cancer cut out, to me, was a butcher job.  Not knowing the circumstance I can only offer an opinion.  Seems like a last resort to me, not the first action. I would not get any treatment unless something appears later on.  It is not worth the consequences.  If anything it should have been done first!!!!!   After chemo you will never be the same again.  The thought of suicide goes thru your mind it becomes so unbearable.  5 years later I had throat cancer and went thru it all over again.  I lost 50 lbs which is normal but I weigh the same as I did 50 years ago.  By the way, you can get your supplements free from the manufactuer.  Needymeds.org.  Hang tight,  Cagy2@aol

RE: After surgery...to do radiation/chemo or not?

by cagy2 on Thu Mar 14, 2019 05:19 PM

Quote | Reply

Forgot to add, I used Ensure supplements Vanilla flavor,  8 cans a day  Strawberry makes you smell like a strawberry so only had a case of them.  You'll be on the tube for 8 months.  I was lucky to have it in because my throat completely closed for 6 weeks and lost my voice.  My hospital gave me free supplements for the first cancer so I was lucky.  Then the manufactuer had a program that made them free.

RE: After surgery...to do radiation/chemo or not?

by Sdurnell on Thu Mar 14, 2019 09:43 PM

Quote | Reply

Tracy,

First, I had throat cancer, not tongue, so my experience was different, but I have been on this site long enough to know that there are lots of similarities as well.

And congratulations to your husband on regaining that much weight while on the feeding tube.  I was not able to do it until I could eat by mouth, but I did get so I could maintain what I had.

I will not advise one way or another.  Most recurrences happen within the first two years, and if he foregoes radiation and then has a recurrence he could have the radiation at that time.  He would likely need a feeding tube again, but he would have the advantage of having had some time to heal before beginning radiation.  But he also might need more surgery before radiation.

In my case, I also had the neck dissection which found only the one cancerous node, and it was encapsulated.  But they could not find the primary, which means either it was so small it wasn't detectable, or that it was destroyed by my immune system.  I chose to have radiation right away.  But the neck dissection was not at all disabling, especially compared to tongue surgery.  So it was a pretty easy call for me.

Everything you read about radiation is likely true, as it is brutal.  We survive, but not without side effects, a few of which are usually permanent or at least partly so.  I am 8 years out and have limited saliva, no teeth (dentures), a stiff neck, and thyroid issues.  Some people do better, some worse.  My new normal is not that much different from the old.

All the best to you both!

Susan

RE: After surgery...to do radiation/chemo or not?

by Dlynn1210 on Fri Mar 15, 2019 12:43 AM

Quote | Reply
Hi Tracy Every type of cancer is different although head and neck cancers do have similarities. Radiation and chemo are an insurance policy that greatly lessens chances of a reoccurrence. I was diagnosed with tonsil cancer in 2007 but can remember when I was first diagnosed. I had to make tough decisions about how I moved forward when I felt like a deer in headlights. The first oncologist I spoke with was at the hosp where I was diagnosed which was 30 min from my home. They recommended both chemo and IMRT radiation. My husband suggested getting a second opinion at Cancer Treatment Center Of America (CTCA) which was 2 1/2 hrs from our home. I made an appointment hoping they would say only radiation was necessary rather than both but I found that both hosp recommended radiation and chemo. CTCA instructed my dentist to make ‘guards’ for my teeth to protect them during radiation and then recommended TOMO radiation. Both hosp claimed that ‘their’ type was equally good. CTCA recommended radiation twice a day which meant staying in a hotel Mon through Fri - an added expense. I found that a cancer hosp in St. Louis had both so called and asked to speak to the head of radiology. I asked if she or a loved one had tonsil cancer which would she choose. No hesitation - TOMO for tonsil cancer or of any non moving organ and IMRT for cancer of any moving organs. I went with TOMO and the best decision I ever made because I later learned that TOMO salvages our salivary glands while IMRT would not have. I have excellent saliva production today while those who had IMRT have diminished saliva production. I had a few teeth in the back pulled prior to treatment at my oncologist’s recommendation but still have the rest of my teeth 11 years later. I have some side effects from radiation but nothing I can’t live with. I’ve been on Cancer Compass for 11 years and only known 3 people that did not survive head and neck cancer - and it was a reoccurrence for all three. A few had only radiology and did fine - it is a decision that is not an easy one to make but one only the patient and the care giver can make. I’m sure someone who was diagnosed with tongue cancer will respond with more insight than I can offer. I wish you all the very best! Diana
5 Posts | Page(s): 1 
Subscribe to this message board discussion

Latest Messages

View More

We care about your feedback. Let us know how we can improve your CancerCompass experience.