It has been 7 years since my first doze of radiation - 32 treatments to the left side of my neck/tongue, and 3 3/4 years since the end of my 2nd bout of radiation - 30 treatments to the right side this time.

Over time, my neck has gotten thinner and thinner as the fibrosis hardens the tissue. Soon, due to the fibrosis, I will look like one of those bobble head dolls!

I am - as time goes on - having more and more trouble with swallowing. Now, having said this I have not lost a pound so I am not yet becoming a shrinking violet, but I do now live with a constant hard LUMP in my neck - feeling of constriction and I worry about where that all of this is going. What about about blood flow and air through my neck? If this continues to get worse will the blood be able to continue to flow or will that become constricted too??

I have heard people talk about throat dilations, and I know nothing about these, except that they sound SCARY and painful. Is this something they can only do once or twice? Does it really help?? I also do not want to ask them to do something when - if they can do it a limited number of times - I should wait until I am in more desperate circumstances??

You may all roll your eyes at this, but it was the RO who I think gave me these last years by thinking outside the box and doing a second course of radiation. Remember at the time our recent news article about re-radiation was not out and it was still pretty rare.

I don't want o "over fuss" with him because - should I have a 3rd recurrance, I want my RO to know I have handled the double radiation well, and that I would be a candidate for whatever NEW tools are available. They all say my constitution has done fabulously well given the treatments I've had. I don't want to do anything that would give them cause or make them leery about any potential future treatments.

So, given all of the above........

Do I talk about deck dilation and blood floor monitoring now? Or do I wait until I am having a severe problem and am actually loosing weight?

I saw from one of Charm's posts that there are tests to test the artery blood flows but lets say they aren't optimal - what can they do about it?

Thanks for listening - hope you understand where I am at.

(by the way I am very lucky, I have little or no neck cramping and pain with my fibrosis but is is quite pronounced from both side)

Thanks.

Donna

Hi Donna:

I have had my throat dilated quite a few times since the end of my treatments. I initially had it done about every 6 months, when swallowing became very difficult. It's done during an endoscopy where you are asleep, or almost, depending on what you are given. I never felt any pain during the procedure, nor afterwards. It did help me swallow better, but my relief only lasted about 3 months. Others, it may have helped more. Now, I usually have it done about twice a year, but, I still have trouble swallowing probably from all the scar tissue. Ask your doctor, because it's a pretty standard practice for us who have been radiated to our neck area. Good luck. You mentioned you could eat, but you never mentioned that you had trouble swallowing.
julieann

If you have some extra coverage it may help to try acupuncture - you've done remarkable well considering the radiation you've received!

Donna

sorry to hear about the fibrosis. The test for cartoid artery is accurate and easy with zero pain, it's an ultrasound. As for throat dilation, you should ask your ENT or an experienced Speech Therapist. According to both of mine, the barium swallow tests I had showed clearly that throat dilation would be of zero benefit to me since my esophagus and throat are fully open and operational. It's a trio of bad luck: lack of tongue motility and strength plus a frozen epiglottis and radiation scarred cricopharyngeal muscles that all combine to leave me with the inability to swallow. So while it helps many, for some of us, it does not work at all.
Charm

Hi Donna - you're right to want to do something about your issues with eating now - waiting only adds to the problem of swallowing - it doesn't help it. Loss may be inevitable as time goes by but you don't know that yet. Another thing to consider is that loss is in fact not inevitable - that with proper evaluation and treatment you may have the potential to improve your circumstances.
You're jumping the gun on the dilitation - first you need a modifed barium swallow study to see just what's going on in there. The MBS is a painless procedure where they actually watch you eat and drink barium to see how the muscles of your swallow are moving (kind of cool!) That test will give you and your doctors the information needed to determine what step is next for you.
Swallowing relies on muscle function and building up pressure to move the food back and down - you likely have issues with both of those - assessment will determine if there are exercises that you can do to strengthen those radiated muscles and help rebuild pressure for safer, more comfortable and long lasting swallowing!
Getting a full assessment of your swallow and a plan will only affirm in your RO's mind what a fighter you are!!!
Good luck!

Donna

Jennifer explained the MBS very well. Ask for a DVD copy of your own. It was indeed "kind of cool" to see the barium solution go up and down and up and down the epiglottis area but then sadly
come to rest in the pockets just above the epiglottis, in the valleculae or pyriform sinuses. These pockets should then clear out with my next swallow, but they don't, so the barium then spills over into an unprotected airway. At that point, it's called silent aspiration because I am blissfully unaware that it's going down the "wrong pipe", although the SLP certainly was as I could hear her sharp intake of breath.

So yes try basic Swallow therapy: compensatory techniques (i.e., postural maneuvers), indirect therapy (exercises to strengthen swallowing muscles) and direct therapy (exercises to perform while swallowing). While none of them worked for me, they usually help most people tremendously.
Keep the Faith
Charm

Frank how long after your cyberknife treatments did you start to have swallowing problems. It will be 7 weeks tomorrow from my husbands last treatment. His throat pain is starting to subside but the swallowing is really becoming an issue. He sees his DR tomorrow for a swallow test. Dr also recomendid therapy. They did mention this complication before cyber treatments and its just hard to imagine someone like my husband who enjoys food so much never being able to eat again. Also what nutrition are you using in your PEG.

So I went to see my wonderful RO and he is going to arrange with the Speech Pathologist for some sort of swallowing test which uses contrast - but not barium - to get a baseline.

They have suggested exercise (swallowing, talking and physio) as well as massage to try to stem the effects of fibrosis. I have prescriptions for the massage and physio.

Here is a wierd question. When my daughter's friends were taking physiotherapy, they were advised to NOT do massage on cancer areas as said massage will activate/promote the cancer cells. I asked my RO about this and he said "There is no evidence (or did he say "definitive evidence" - can't remember) of any such thing.

My RO also said something about getting a "stent"??? He did manage to ease my fears about squeezed arteries, but all of a sudden I am wondering what the heck a stent is as it relates to my throat. I have heard of stents for heart problems...but for a throat??

Any feedback is appreciated.

P.S. Swallowing is getting worse - yesterday I aspirated a jujube into my left bronchia. I believe the candy is in my lung now - I didn't go to the hospital but just might. I remember when I was in the hospital I asked about aspiration and I was told that food items will - in time - dissolve, unless of course it is a large amount. I will keep on aye on this to make sure it doesn't turn into pneumonia.

Donna

Lady22Bird

thanks for sending me a PM which I have answered so we don't hijack Donna's thread. I'm sure you will have more questions so next time just hit post new topic and you will have your own thread to discuss your husband's progress and travails.
Keep the Faith
Charm

Donna

I'm guessing that the doctor is just reassuring you that if your fibrosis causes a narrowing of the carotid artery, they can put a stent in that would keep it open. There have been discussions here about people getting one.
Massage after cancer TX is just fine as far as I can tell. Probably just a liability issue plus the radiation damage to skin during TX does not lend itself to massage.
Interesting fact is that jujube have different meanings in Canada then here in USA. In the United States, Jujubes is the brand name of a particular type of candy, whereas in Canada the word is generic, and describes any of many similar confections. Our jujubes are brand name candy and a type of starch, gum and corn syrup based candy drops In Canada, jujubes or jubes are the name used for a particular type of "gummy" candies. They are also soft and squishy, with their texture due to starch, gelatin, and glucose syrup. Other ingredients include sugar and flavoring. Common flavors are orange, lime, lemon, cherry, black licorice and grape
NOT A HEALTH FOOD.
Charm

A stent is a mesh tube, typically stainless, coated with a tissue attractant (aerial vessel tissue will grow into the mesh and keep it in place) placed inside an artery to open it up from occlusion.

Most stent procedures are used in the heart but sometimes they are placed in the carotid because of fibrosis in the arterial wall. It is not that common of a procedure.

Blood flow through the carotid is fairly easily checked by listening to the sounds of blood flow with a stethoscope.

I don't think that candy or food can get past your bronchia but fluids certainly can.