Other than that, how are you doing? I hope you are progressing well.

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.

How long till your speech was back to normal or just better?

Mostly I just wanna know if I will be able to eat decently and talk decently in a month following my last treatment ?

Hi Ali E

First, congratulations on almost completing this treatment. It's a big step. I recall ringing that bell in the lobby loud and proud on my last day of treatment (30 days and 60 Gy units to mouth and neck) about 18 months ago. For me (and what I have learned for most people) The two weeks following treatment tend to continue to get worse/bottom out. Then, you start to see improvement slowly.

Recovery from radiation seems to be a long slow process. And, I have heard varying stories. It seems to affect people in many different ways. I was able to keep active (jog, hike, surf, or yoga depending on the day) throughout treatment. The mouth sores and neck burns were much better within about 1-2 months after treatment.

Flavors were also better within a couple months. But, I am 18 months out and still recovering flavors. For example, it took a couple months before I could eat a slice of mild pizza but now I can eat just about any plain/mild pizza. It took a couple months before high citrus fruit started to taste semi-normal again now I can eat any fruit. Alcohol still tastes terrible but I don't miss it much. I can now process carbonated drinks like a soda but slowly and again, I don't drink them much anyway. I still can't do spicier stuff like spicy Mexican or India. I can do the really mild Mexican and Indian foods again now. Some people have told me they noticed improvement as far out as 3 years.

I had to learn to judge my recovery from radiation in weeks/months. Surgery was more like daily improvement. I nicknamed it the slow burn and slow recovery. But, recovery, all the same.

Hope this helps and happy to answer any other questions.

Stay safe and keep the faith.

Nels

My last day of radiation is Monday the 31st.
I had stage 3 tongue cancer (SCCA)

Doing 33 treatments on my tongue and my neck.

Those of you that have done this or similar I have a couple questions.

Once radiation stops : when did your mouth sores start to heal ?

How long till you were able to eat without too much trouble ?

How long for everything to be better?

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.

Cancer of the very back of the oropharynx can often involve the larynx. As to staging, even a stage two cancer in that area is often a call to do radiation which is the standard of care in anything outside of very early disease that they feel could be 100% removed through a TORS type of surgery. Even then oncologists often still prescribe radiation after surgery. So what you are describing seems normal, if you can ever call any cancer normal.

And being cautious and getting more scans is always prudent. That is not the same as the doctor believing that you have a lung extension of the cancer, that’s them covering all bases.

There’s a section of the main OCF website that explains staging and an important section after about statistics which might give you some reason not to expect the worse. I hope you will read those two areas. But essentially staging to the patient does not mean a lot. It’s designed as a way for doctors to talk to each other when perhaps only one of them has actually seen the patient. A stage two cancer has certain characteristics, the size of the primary, any metastasis of it or not, all black and white physical descriptions of the disease. By telling the other doctor it’s a stage two or three, the other doctor now knows lots of details about it without having actually examined the patient or scans. Staging also informs the treatment protocols normally employed. And guidelines are well established for any given stage of cancer in a specific anatomical site.

For patients staging has less meaning. A stage four patient has lots of downsides including a statistically poorer chance of a good long-term outcome. But those statistics do not apply to every patient. I was a very late stage four patient with bilateral mets and more. I’m still here 22 years later. Statistics are just that, numbers that may not apply to you, no mater your stage at the time of diagnosis.

Try to keep your fears in control, don’t let them take you to too many what if’s. It’s a time for the treatment team to learn everything, be sure they understand where you are, and develop a plan best design to resolve your situation. Patients usually feel better when everything is known, all the cards are on the table, and there seems to be a well thought out plan in place. For sure apprehension and even fear is part of a normal response. But with knowledge and a plan, the fear part can be tempered with a goal that allows them to see a positive outcome, even if they are still apprehensive of the journey itself.

As you learn more please come back and check in regularly. People in this group have done this dance, and they can be instrumental in helping you understand and cope with each step till you are out the other side of it all. You won’t be alone. B

https://oralcancerfoundation.org/discovery-diagnosis/stages-of-cancer/

https://oralcancerfoundation.org/discovery-diagnosis/statistics/

Hi I had a biopsy done Jan 12 that came back as stage 2 squamous cell carcinoma of the supraglottis. Recommended treatment is 7 weeks of radiation. I had a second opinion today, & after scoping me, she feels it’s stage 3 because she didn’t see one of my vocal cords vibrating. So she is recommending both radiation & chemo, as well as a pet scan to make sure it hasn’t spread to my lungs. I’m scared, confused, & just want reassurance I guess, that a pet scan to check for that is normal. Now I have myself so upset & convinced it has spread & I won’t make it.

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

Dear all,

I am post-surgery by 16 months after having 40% of my tongue removed and replaced by a free flap from my forearm, with microvascular surgery.
Up until two weeks ago, the flap has remained very pink, almost a similar colour to the remainder of my tongue. However over the last two weeks, it has now turned white, and not as though it is about to shed, which it does appear to do regularly. This does appear different, thicker and rubbery and very white, almost as white as paint. Is this something that I should be concerned about? Or does this happen over time and has this happened to others?

Many thanks, much appreciated

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

You are welcome, though I don’t think I was much help. I did have a conversation with a head and neck surgeon this morning about something else. I asked him about this. He said that while he does some vascular work as the nature of his profession, it’s not a specialty for him, further that things that involve the carotids specifically require someone that is specialized in this. That he doesn’t do stenting even though it is pretty straight forward, as his institution has vascular specialist staff.

He had a question though, and that was how did they determine it was a clot, and if it was one, how did they decide that it was stable and going to stay put, making it ok to live with it. Those seem like really good questions given a stroke in your history. I hope that you will pursue this sooner rather than later to get some answers and resolution to this. I find your doctors advice to be at the very least cavalier. Please come back and tell us what you have learned. I would like to learn from your experience myself, given my own situation, and in order to help others. B

Hi, I am 3 weeks post surgery for a tumor in the right side of my tongue. The tumor was 2 cm. After removal the margins were clear of cancer. They removed 20 lymph nodes from my neck on the same side and found one 2mm tumor in one of the lymph nodes but the others were clear. Everything else was clear. The doctor is recommending 6 weeks of radiation on the mouth and both sides of the neck. I have already had one salivary gland removed (negative for cancer), and I am worried that the long-term side effects of radiation will have a significant impact on my quality of life. I am particularly concerned about the loss of taste and long-term dry mouth. I also read about damage to the carotid artery and other worrying side effects. Is it all too much?

I guess I am looking for advice from the community. I know every case is different and it's impossible to know what would have happened if you hadn't chosen radiation, but how does your decision to go through with radiation sit with you now? Do you regret doing it? Or are the side effects manageable and it's worth the extra insurance it buys you that the cancer will not return?

I am grateful for any stories you can share.

I am 48 yrs old, healthy in every other way, and I have 2 kids (12 & 14). I have a lot of life ahead of me aside from this diagnosis.

Thank you so much

Thanks

I’m hoping mentn34 will see this thread and come back to post since he has direct experience. I can offer some ideas but while I have about 70% occlusion, and it is causing some lightheadedness, I’ve had no treatments other than routine monitoring of it by ultrasound.

Your situation is different if they are sure this is a clot issue. Thickening and radiation damage to the carotid arteries is pretty common as a long-term complication from radiation treatment. Stenting has been routinely done, and I talked to a couple patients that have had vascular autogenous grafts of blood vessels from elsewhere being moved there successfully. But the idea of living with a clot seems counterintuitive, especially given your history, and I think it would be worth getting a second opinion from another vascular surgeon with experience in radiated patients soon. There are some quality people in the Boston area and I think it would be worth the trip once you identify the right person. If we don’t get a poster with more experience in the next couple days answering you, I will reach out to one in our science board for his ideas and report back. 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

I'm 5 years out from radiation treatments for squamous cell cancer to the base of my tongue. no remission.
that's the good part.
a periodontist who was attempting to patch the receding gum line on a front tooth (it didn't work), pulled a loose molar while he was at it.
that's bad.
the resulting dry socket left me with osteoradionecrosis.
the only course of action offered is the title of this posting.
the only thing I could find on line about what life is like after this horrible proceedure, was a single survey from the U of WA.
no details, just categories.
and, of course, the doctors consistently rated the patients' quality of life higher than the patients did.
I need to hear from someone who has been thru this.
anybody out there?
thank you

Hi
I’m 10 years out of treatment. Left neck dissection and 7 weeks of radiation ☢️ ( the gift that keeps giving). Last year had a stroke due to radiation damage to the carotid artery. 85% blocked. Survived the stroke had surgery to fix the plaque build up . Went for a scan last week and now it’s blocked up 100% due to a blood clot!!!! Not dead yet🤣 Here’s my question. Can they go in and” stent” the blocked area now???? Surgeon said “just live with it” should have gone to Boston!!! And question 2 is was the long term problems with a blocked artery??? Thanks

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.

Pandora, there’s a reason oncologists are very strict about what you put in your peg tube and why you can only wet your lips with water but not even take a sip. My husband’s esophagus was totally closed by scarring after radiation. He took his nutrition through a peg for half a year before a radiation interventionist at Toronto General Hospital opened it up for him. Initially, John was able to swallow liquids and puréed food but then he developed silent aspiration which put him in hospital for more than twenty days. Then two months later, the pneumonia happened again and that time it proved to be fatal.

When John was diagnosed as having the blockage in his esophagus, I had a discussion with his oncologist who was dead set against me putting puréed food into the peg tube because he said it would cause blockage and the stomach couldn’t taste food anyway. I am from Ontario, if you ask, you should be able to have a dietitian to guide you and help you with how much should go into the peg tube. Sometimes it is important to know how much water to put in so that the kidneys are not over-burdened. I was actually told that i was giving John too much water.

Whatever help you need, ask the doctors. The system right now is burdened because of the covid situation but back when John was in treatment I got whatever I needed (for example, he needed an appointment with an SLP and I gave the oncology nurse the name and number of the SLP he had seen previously and that got him in fairly quickly, without having to wait for six months).

Wishing you the best!