Prolonged reaction to radiation treatments

breakmom - I agree with Carol. Your oncologist is only looking at this clinically - sometimes physicians err on the side of science rather than that of the patient. If you feel you need the tube to help get you thru this period, then ask for one. No harm done and only benefit. It's your right as a patient to demand proper treatment.
- Jeff

Coming in late on conversation but I had head and neck cancer if your speaking about a feeding I had one I couldn't. Eat by mouth after the 3 radiation treatment I would have died without it good luck don't let the Dr make that decision for you

Jaqueline Bane Asher

Thank you everyone for your help.

I am now halfway through my treatment. 2 Days ago I asked them for a feeding tube. They put in the referral and now I\'m waiting for a phone call to schedule the procedure.

I know that getting a feeding tube is a difficult step to take, but you won\'t be sorry because you can ease up on worrying about eating and not losing huge amounts of weight, not to mention missing vital nutrients. Once you\'re done with treatment, you\'ll probably need the tube for a few additional months and can then get rid of it. It\'s really worth it, so good for you. Hang in there...this WILL end and you\'ll come out on the winning, healing side!

Not really, because the radition builds from the initial time. Like it multiplied in its effects and it took me maybe 3 additional months after my treatments ended. I had 35 radition and 7 chemotherapy. I was on the tube for 18 months before progressing to semi- solid food. But EVERYONE is not that same. Mine was primary base of tongue, metastatic to tonsils and left side lymph node involved. No surgery.

I totally agree, in 2013 I had stage 4 squamous small cell carcinoma base of tongue tonsils and lymph nodes and had 35 radition and 7 chemotherapy. Got the tube right away and had teeth removed. Radition KILLS the small blood vessels in the mouth and your teeth will eventually fail. Recommend the tube right away. Still went from 180 down to 110. 5 five years NED.

Hi Carol, I’m wife/caretaker for husband dx with tumor base of throat Feb2017 once hospitalized for inability to swallow. Thankfully PEG was placed right away with his 30lb weight loss within 6wks. We were told his cancer treatment was routine: 7wks daily radiation with weekly cisplatin therapy. Sadly we since learned the reason still for his inability to swallow anything post treatment was due to that aggressive radiation treatment collapsed his esophagus, basically “frying” it closed. Since finishing treatment via local oncology last year, I’ve had both Moffitt Cancer Center (here in Tampa Bay FL) and Dana-Farber (Boston) oncology consult teams state that they believe more swallow testing should have been done throughout radiation to best determine quality of life (swallow) vs standard therapy regiment. My question is how many other throat cancer patients treated with aggressive 35-day radiation with chemo have same devastating results, and what success of regaining ability to swallow? We are now under care at Shands/Gainesville FL GI oncology team trying to slowly dialate through scar tissue once they were able to penetrate the tumor obstruction with fine needle: “ELR” under Dr Estores’ unique procedure. For others facing long term esophagus swallow issues post aggressive HN treatments, perhaps sharing this doctor and treatment option might help. Ideally going forward “routine therapies” get re-evaluated as western medical providers now know just how damaging their standards of care really are. Good luck to all, stay focused on maintang quality organic (if possible) nourishment even via feeding tubes, I have Ken on quality products plus home blenderizing meals. The one thing we can control is how we feed our bodies, and that is so critical in ones ability to heal and thrive again in life. Dotti

Dotti,
I admit that this is NOT something I have experience with as an RN, so I'll go by what I've read about it and experiences reported by others. There's no recent data anywhere about how often it happens because there are a lot of variables including what kind of cancer (squamous cell, etc), how much radiation was done, what surgery was done, etc. A common thread though, is that it's not easy to reverse. Radiation damage to a tube means raw skin is across from raw skin and and loss of structure or muscle use will allow those raw areas to meet and heal together.
Scar tissue can be tough and fibrous, so if that's now what the structure of the esophageal tissue or oropharynx or whatever tissue that's damaged is, it won't regenerate to healthy tissue that functions properly. They have to try to tunnel through a small area maybe or go through with another tube that will function with swallowing muscles. Putting a stent through the area is just probably going to get blocked. There are a lot of problems possibly involved in trying to repair a problem like this that can include salivary glands that don't function well, the muscles needed to swallow can be damaged or atrophied from non-use, healing after any attempted procedures may not happen, and some procedures may cause a permanent loss of the ability to speak. A LOT of patients are told they will be using a PEG for the rest of their lives. Some who went through a lot of dilation attempts or other procedures have no improvement or can only manage to get a few sips of water down, others aspirate food or fluid into their lungs.
One person I read about had an ENT and a GI doctor work together to advance tubes with lights on them up from the PEG tube through the stomach while the ENT tried from the top and somehow they found a way to connect the two. Others have had part of their intestine brought up to replace the damaged esophagus, but at the cost of losing the ability to speak.
If I were you, I'd contact the Mayo Clinic and MD Anderson for them to review the records to see if they have any ideas. But, I'm not sure you're really asking for this for yourselves. You've already been in touch with one of the best cancer hospitals in the country (world), Dana Farber. You're getting good nutrition through his PEG and that's great. The people who went as far as losing their ability to speak invariably regretted having gone for that option, especially since it often makes no positive difference.
This is one of the horrible problems that HN cancer patients sometimes have to deal with. I remember in my classes taken for my RN bachelor's degree thinking how traumatic these issues could be when added to the diagnosis of cancer. I hope those treatments your husband is still having aren't too painful. Please let me know if they make any progress with him.
Carol

Hi Carol and thank you for this prompt detailed response. I believe we are the best competent hands of Dr. David Estores at Shands/Gainesville FL right now with his renowned ELR-Esophageal Lumen Restoration-procedure. They were successful with first attempt to penetrate this