Negative… Squamous Cell Carcinoma Antigen is what I was told it was called. But thanks for finding what was important to you for a reply.

How long did it take for your tongue to have feeling back where the surgery was? Mine is still numb feeling and swollen on half and my surgery was 3 months ago.

Like Nels said, everyone is unique and different. It was three months after the end of treatment before the pain of it all started to die down for me. I was on strong pain meds well into my fourth month of healing. Eating was a slow transition from the PEG tube I was on to soft wet foods that also took quite awhile. I hope you have an easier time of things, but expecting to be back to normal, from reading patients posts here for years, seems a little optimistic. I hope I am wrong and your journey back to normal is short.

I have seen and heard of patients that have these kinds of tissue transfer flaps have the tissue change color a couple times early in the process. This is a function of the new vascularization of the tissue. They seem to start out pink, turn grayish and return to pink as the new micro vascularization occurs and reflects the changing tissue as the blood supply changes.They also seem large at the beginning and ultimately get somewhat smaller as they heal in. I have not talked to anyone that has had this happen far into the process and I think you need to see your doctors soon for their take. Causes for this might be an infection that has taken hold, either bacterial or fungal.

I hope someone joins in with some direct experience. I wish I had a better answer for you. Please come back after seeing your doctor and let us know what this was and what the solution to it is they are going to apply. It will help us understand it better, to in the future help others. I hope you find this is something simple and easy to deal with. Wishing you the best. B

Thank you so much for responding. Yes, a big part of my fear right now is related to the unknowns & how the info seems to be changing every few days. I’m just anxious to start treatment.

I'm in Los Angeles, so if you need to know who my oral surgeon/pario is I'll post the info.

Will do Brian. Thanks I’ll be in touch.

If yours were an HPV positive cancer I would have a very definite opinion. Those cancers respond very well to radiation, and we now have seen excellent results over a period of more than 4+ years in de escalation trials of people at half the radiation dose having complete resolution of the cancer, with few of the long-term consequences of 65 gys over six to seven weeks of treatment. But yours if you are a non smoker (please comment) with an unknown etiology, are not eligible for that.

There isn’t a scientific answer that is black and white to your question. We have seen people have surgical only solutions and do well. Others have multiple recurrences and surgeries to resolve them. The cancer keeps returning even with what appear to be clean margins. They survive all these, but it’s a reoccurring issue every few years. People that have follow up radiation do not seem to have to deal with the recurrences. But they do indeed live with significant long-term issues that arise over a protracted period of time. Some of those you mention, but there are far worse ones. They are mostly things that are livable, but there is no denying that they compromise your quality of life sometimes in the extreme. I had lots of radiation, before IMRT and its improved targeting. My life is full of difficulty and compromises after about 18 uneventful years.

The issue is often that these tongue cancers are not focal areas of cellular conversion. It’s related to something called field cancerization. The surgeon gets clean margins, but in surrounding tissues there are cells that are not cancerous but dysplastic, meaning they are changing from normal to malignant and are at some in between stage of transformation. It not surgically possible to keep cutting to try to remove all those small areas as the size of the surgical field be one very large and that has significant life impacts of its own. A larger field of removal could be grafted with muscle from somewhere else in your body, but again a more involved process, and if too large is harder to ensure you will have full movement of that part of the tongue. These are all questions to discuss with your doctors. Everything has trade offs. And I do not think there are any absolute answers. You don’t mention etiology, and that would impact your decision.

I did not have a choice about radiation. My disease was very advanced. I would in todays world even at similar doses, have had a much more confined field of radiation that was closely mapped. That might have eliminated some of my worse after effects. They are really bad but I would not assume that your experience with IMRT radiation would be the same as mine with XMRT. You might explore getting more targeted proton beam radiation which is more sparing of surrounding tissues, but it’s usually very targeted, and that’s not why they are recommending your radiation. They want to paint the surrounding areas. Please let us know what you decide and their arguments for their recommendations. I wish you good luck no matter your future treatments. B

I know lots of people who have had this done, and I’m also one of them.

I think your first paragraph meant to say recurrence, not remission. Probably an auto spell checker error, I hate those things. Obviously recurrence is the cancer coming back, remission is it going away.

There are few cures for ORN outside of surgery that consistently work. I answered a previous thread on this just recently that talked a bit about hyperbaric oxygen therapy, and also the use of a drug, Pentoxifyline combined with vitamin E that has been shown in some studies to increase the micro vascularization of bone. You can search for my previous posts here and find them. Both ideas have several peer reviewed papers written about them, both have great results in some people but not others. The studies cannot say why. As a result doctors either believe in these ideas or not. The science is not definitive. O2 dives are not always covered by insurance and they are expensive. The lack of coverage is the result of mixed outcomes. There are few downsides. Pentoxifyline is not associated with many negative side effects either, and might be worth a try. It’s an Rx idea, so you need your doc to buy into you doing this. I tried both without the kind of success that would allow me to not ultimately end up having surgery done. So I’ve got experience with all three ideas.

The surgery is called a fibula free flap. It’s a pretty big deal. It can take from 8 to ten hours to do. You want to choose a surgeon and institution that has done a lot of them successfully. They will take a piece of the non load bearing fibula leg bone, and a small pedicule of the muscle surrounding it to get the vascularization that supports it, and after taking out the necrotic part of the mandible, replace it with the section of fibula. Tomorrow I’d be happy to answer any questions you have about the surgery. Mine did not go as well as I hoped, but after an immediate failure, and a second and ultimately third surgery in ten days, it ended up working. I do not think my experience was the norm, and we can discuss why. So food for thought. Talk to your docs, head and neck surgeons not oral surgeons, about their thoughts. Then ask me what else you wish to understand about this. Lots of these surgeries are done every year. It is the “go to” idea, with a high degree of success. Healing or reversing osteoradionecrosis which is essentially dead bone, can only be done occasionally by the other two methods I described when it is very early in its development and small in size. B

sorry for your loss

another covid-related victim

I think that gmcraft makes some good points. Clearly we all agree that doctors with more knowledge and particularly intimate understanding of any particular patient are the people you have to trust. We as travelers on this journey have experiences to draw from, but they are never the equal to their years of school and clinical experience. We are not a substitute for them. But I have seen many examples over 22 years of doing this, that have taught me they are fallible human beings like all of us, and are not all knowing, and even sometimes make mistakes. Even with that knowledge people have to have their bottom line, go to person, that they trust and who is qualified to not only treat them, but answer a myriad of questions, many outside their area of expertise and training. The question is should we be asking a specialist in chemo therapy for answers about something related to eating?

For instance, I trust my radiation oncologist to determine in his area of experience, training, and expertise to use the tool he is trained in to kill my cancer. I’m less interested in what he thinks about surgery which is a world of details and a depth of anatomical knowledge he will never have. Ditto what he thinks about nutrition, also out of his realm. When it comes to PEG tubes I trust my Gastroentorolgy doctor, but even he is not a nutritionist. It’s a very specialized world to be in medicine. Knowing that, we trust teams over singular doctors.

The topic of blended diets crosses two different disciplines gastro and nutrition. Each with a perspective of a topic that has evolved and changed greatly just in the last decade. The Oley Foundation who has more information about tube feedings and nutrition is a good source. I read about my button type Mik-key PEG tube system there and I knew immediately I wanted rid of my dangling tube that was in the way, prone to clogging and had no good way to unclog it at home, causing emergency trips to the hospital to have it taken out and replaced, and in general as something not being balloon retained, that I could not change ever at home. Only my GI doctor understood my desire to change and why, the rest of the team was clueless that the button type even existed let alone its advantages.

When it came to nutrition, my original nutritionist was only interested in keeping me on pharma company formulas. God forbid that I should eat the real food that has sustained me and most of humanity forever. Brainwashed comes to mind as I think of that. Obviously to her, those canned products must be better in someway.

There are reasons for some people, in some situations, that formulas are better. But tens of thousands of people on PEG tubes blend their own foods when they return to a normal life, but are NPO or nothing by mouth for various reasons. There is no reason that with a little education people cannot do this if they do not have contradictory medical issues. It’s healthier and cheaper. Even if they just blend up what’re the rest of the family is eating most of the time, they are frequently better off. They are no more prone to nutrition or digestion issues than anyone else. Most of America lives on junk food. It’s bad for you on so many levels. My cardiologist could not be happier with my cardiovascular health since I started eating the things I do on a real food, PEG diet. Every part of my blood health is at optimal levels. Even my blood pressure went down to normal over time as the fats and other things I was consuming no longer clogged my arteries. I’m actually healthier this way. All that aside I would kill today to eat some great tasting well cooked meals; even a hamburger commercial reminds me of what I have lost. Food is one if life’s great pleasures. I’ve come to accept its absence. But if I have to do things through a tube I’m going to optimize it. That ability to add a variety of healthy natural foods is not happening on canned formulas. Just read their labels.

Just remember that doing this well is very dependent on getting set up right. The right blender, the right diameter PEG tube and design, the right consistency of blend for bolus syringe feeding. None of this is rocket science but you have to learn it like anything else.