Hello, I'm saddened to read your story and that you have need of support. It sounds like you have a large tumour if it has crossed the midline. Do ask about partial glossectomy with forearm free flap.This may be an option other than full glossectomy. My husband had a large tongue tumour. It was at the base of tongue and also crossed the midline. He was initially treated with radiation and chemo, but this did not work. By this time his tumour extended into the epiglottis ( which is the top portion of the larynx). Kris then had a full glossectomy, plus a laryngectomy . Does your tumour involve the larynx? Why are they recommending Laryngectomy? If you have a Laryngectomy you don't require a tracheostomy as you will have a permanent opening on your neck to breathe through. If your epiglottis is involved, then , unless they do a laryngectomy , you will be at risk of aspirating food and fluids. Sorry, I'm a bit confused as to where exactly your tumour is and what treatment is recommended. Anyway, my Kris now has the stoma on his neck to breathe through. There is no risk of aspiration. Even without his tongue, he can and does swallow. His PEG is long gone. He also has intelligible speech. I'm wanting to give you hope Izzy. Kris has no tongue and no voice box and is alive and well 8 years post diagnosis. Life is certainly different, but it is still good. Please ask me any questions you want/need answered. PM me if you want. Take care, Tammy.
I think if the doctors aren't in the same immediate practice, they are different opinions. I don't know a lot about it (just a patient!) but in my area, we have two main hospitals. The doctors have to affiliate with one or the other (or both) to be able to see patients and perform procedures at those hospitals. It really has very little to do with anything more than that, as far as I can tell. Just means that next time I break a hip, I might want to go to the other one so I get a different on-call surgeon, LOL, if I didn't like the one I just had, (Jury is still out on that, actually, but it makes a nice example ... and they never did tell my primary where I was.) My primary can see patients at either hospital. My OB could deliver babies at both, but had a preference about which one he'd rather deliver at. And so on.
Now, if the office is actually IN the hospital, then it's probably not at all like the situation I am describing and feel free to disregard everything I've just said. It's just how I've observed doctors and hospitals seem to work in our area (except the ones hired directly by the hospital for ER stuff and so on).
Thanks again for your thoughtful response. You make all excellent points. My anxiety is its own beast and though I’m making efforts to try not to let it run with my thoughts, it’s not easy.
I’m not a stranger to allergies and maybe the reason I’ve been dismissing them as a possible cause is because I’m used to the “runny nose”, “stuffed up all the time” type allergies. Maybe allergies evolve... I know my dad has tough allergies and his have gotten worse through the years. He sometimes indicates he’s suffering when he seems fine to me though I know he takes lots of medications for them. And TMJ dysfunction is absolutely on the table... prior to all these worries, I’ve always suspected that that is an issue for me. I’ve never been able to open my mouth very wide and have always had pain when I’m chewing something tough for a long time, had to quit chewing gum and catch myself clenching my teeth many times a day.
And I know I was being unfair to the radiologist. I can’t assume that his lack of experience would influence his attention to detail. As someone who used to analyze barium swallow studies (and was pretty awful at it), I used to find things “wrong” all the time that weren’t because I was afraid of missing something.
I’m definitely going to take a list of questions to my ENT on Tuesday (this is a new one) and then on 7/15 I’ll have my follow up questions for the ENT who ordered my CT.
One thing the ENT said to me the other day that I forgot to mention was that sometimes reactive nodes can take 3 months to go down... has anyone ever heard of this? On other boards I read personal stories of folks with nodes that had stuck around for a year or close to it and when they finally had them looked at they were just reactive nodes that were permanently that way. I also found an account of someone saying his nodes had been swollen for a decade. And others who had really large ones that were removed, biopsied and determined to be reactive... and old. My point is, I’m not sure when these nodes appeared. I didn’t feel them until about 3 weeks ago but I was looking for abnormalities when I found them. A simple node check on myself doesn’t reveal them, I have to dig around for them. Who knows if I’ve had them since that time I had bad strep in 2016? I’ve lost about 60 lbs since the beginning of 2018 (intentionally) so undoubtedly the he structure of my face (in terms of fat and skin elasticity) has also changed. Okay, just wondering out loud here about things I don’t have answers to.
I’ll try to hold off for any more posts until after my appointment on Tuesday.
Howdy - Sorry to hear about your needed teeth extractions. I had a loose tooth extracted a few months ago. The oral surgeon, drew blood and spun it into a clot. I'm not sure of the mechanics but, the clot was inserted into the socket after the tooth was removed. I followed up with the oral surgeon and my dentist, both were very pleased with the healing. I'm not sure if it will come up in my signature but: 20 year survivor two rounds of radiation one round of chemo ORN resulting in jaw removal
Best wishes for a good outcome with your tooth extractions
Thanks for the positive post. I'm just at the begining. I'll find out on 1st July what date my treatment starts (I'm on a clinical trial so need extra tests completed this week before the randomisation happens on Monday)
It's great to hear you've eaten pizza. Definately something to look forward to once my treatment is done.
I went to a speech /swallowing therapist, who gave me some very good and easy exercises. Some as easy as just looking as far left and right several times, each day. Maybe it will be frustrating at first, but as you stretch out your neck, hopefully you will gain mobility and less pain. Everything with this cancer recovers so slowly, but surely. You will recover over time, stay positive.
Hi Jen This is Hazel I am 10 month post radiotherapy for squamous cell cancer of the right tonsil and was found h p v 16+ .I am 62 if I can do it anyone can I am a wimp break a finger nail and I cry ,but 35 radiotherapy sessions and 2 chemotherapy sessions I found positive mental attitude got me there. I echo Christines advise delegate delegate and then delegate some more. Don’t take it on yourself , if at all possible always have someone with you at meetings with consultant s get them to take notes, go with a list of questions write the answers down When you come out your brain will be a mush but if you have notes yiu can refer back to them. Plus eat as much as you can as weight loss is a common theme , I lost Just I er 2 stones and am only 5 foot tall ,but in the week so leasing up to treatment I ate ice cream ,cream cakes in fact the higher the calories the better it’s one if the occasions that you can eat . Even if in the supermarket I find it strange no longer looking at How loan the calories are but weighing up in my mind has it got enough calories to be worth my time eating it, so low calorie food deffo not worth it. Good luck Keep in touch Hazel
Steve’s surgery went well yesterday, his oncologist replaced the gtube w a Gj tube, hopefully this won’t give as much trouble. His oncologist said he has only seen 2-3 cases of great problem like his, he is probably in his 70s.
Btw, his surgery lasted for 6.5hrs yesterday, they removed tissue from bottom soft palate, reconstruct the area using skin from his arm.
Thanks for your thorough response Rabbit. The information you gave me was precisely what I was curious about.
I honestly have no qualms about talking about my sexual history with doctors or anyone really, other than maybe my parents... it was disappointing that 3 providers didn’t bring it up with me! Especially with the information out there about my demographic being particularly more affected than previously. I will admit, ENT #1 saw me before these recent concerns... I don’t know what my tonsil looked like then. He and the other ENT who I saw my recently, are faculty at Harvard Med School. I’d suspect they are educating students on HPV correlation. Or I’d hope. In fact, just the other day, Mass Eye and Ear shared an update on HPV. Both have 20+ years experience.
As I mentioned, I have had a HPV positive pap about 13 years ago. But the following year and ever since, I’ve been negative. There is so much info out there that my head spins. I am a researcher, but my scope is less about pathology. I saw really recent information that the presence of antibodies actually was a risk factor for HNC whereas previously, it was said antibodies was a protector. Unless I’m just really really bad at interpreting lingo (which is a strong possibility.)
I’m not sure how old you are but I suspect not much older than me... I felt the immediate response was “you’re too young”. Even the nurse was curious why I was there. I’ve got this before - when I had a mammogram and when I had a colonoscopy. It’s discouraging to me when symptoms aren’t fully investigated due to age because of low level of suspicion. Or maybe I’m just misinterpreting all of it. Anyway, I’m rambling, thanks again for providing your info regarding HPV history.
I’m sorry to hear of your fathers troubles! I too had a right mandibularectomy with a right fibula free flap about 4 years ago. It took about 8 hours, as my doctor does them often. Due to no vascularity in my left neck, after multiple surgeries, they used a carotid artery and vein from the chest for vascularity. I still have some difficulty in speech and lip appearance as the nerve was cut in my jaw, and not replaced. I may undergo a future surgery to correct the lip, but I’m in no rush for another surgery.
I don’t work anymore, so It doesn’t effect me as if I did, so I don’t have to deal with the public like that, but sometimes it is ordering out until I get right back!
I did go to an SLP sometime afterward. It was like my 3rd treatment through the years with that, so I don’t recall the specific exercises they did, but it was nice going as it was in the head and neck cancer unit, and everyone is asking about you, and see my ENT in passing.
Good luck with the surgery!
I forgot to add that I already had a feeding tube in case I needed it, which I didn’t since the hospital in the step down unit gace you purées food about the 3rd day. I was released after the 7th day, and went a rehab home for about 2 months. They didn’t remove the leg boot until my second month as my leg wasvt healing, but later had another graft surgery to close. The area for tracheostomy’didb’t heal for a month, so I had to do without and keot it covered.
Thank you for posting this. I'm going to have 6 weeks of radiotherapy with chemo thrown in at the same time. This will be after my surgery. I was wondering how the 6 weeks will work as all I know is that rad will be 30 sessions, 5 per week. I couldn't see where the chemo was going. (I've got my meeting tomorrow)
Anyway, thank you for posting something positive in such a dark time. I look forward to finding my happy day in the week
I answered more thoroughly on the Introduce yourself thread...
If you read my Signature, you'll see that my Primary surgery was in 2017. ( glossectomy, mandibullectomy, neck dissection, etc)
But this year, I've had to begin all over again Because My Cancer Has Returned .
I don't know what's coming next because I have to first heal up from these two surgeries from April & May. But I can tell you my calendar in full of appointments. And I have very complicating comorbidities, like my underlying Genetic Immune Deficiency. Yep, I was born Immune deficient. Every 28 days I am admitted to the hospital to get my infusion of intravenous Immune Globulin. That replaces a small part of what I do not produce...
Anyway I am quite tired now!! And because of my continuing aspiration pneumonia problem, they are also discussing taking me off of my liquid diet. And that's all I have left !
When I made the saline for the saline wraps for his radiation burns, I boiled the saline and let it cool down before I used it. You may want to check with your pharmacist if he is going to rinse his mouth with it.
I kind of figured they were looking for some type of cancer with the PET/CT, but it’s a possibility of it being TB you mentioned, which I know nothing about, but it seems the lesser of two evils!
I hope for the best whatever outcome, and feel you’re doing the best you can among the way, and hace my admiration! Here, there are immuno therapy treatments now making possible dreams a reality, so I hope that would be an option. If it’s needed.
Take care for now, and my thoughts are with you along the way!
Hi Chandana I am 62 and 10 month post radiotherapy for tonsil cancer. I too had ulcers and a radiation burn the full length of my tongue. I was prescribed gelclair which did alleviate some of the pain.i am in the UK so my treatment May have been slightly different. Once treatment finishes just remember the hard work really does start as we all recover at different rates. I found it was bettervto have an idea of what was going to be in front of me as opposed to blindly not knowing.
Welcome to OCF, Hazel! Im glad you found our site! OCF is the largest online oral cancer (OC) site dedicated to providing correct and up to date medical info for OC patients and their caregivers.
Its always great having survivors join our ranks! Being 10 months post rads, you are still in the middle of your recovery phase. The worst of everything is many months behind you. A complete recovery takes 2 years after finishing rads. You should notice more improvements with your dry mouth and sense of taste here and there up until about the 2 year post rads mark.
Yes, I heard about using saline solution wraps, and and another I forget the name, but it’s posted someplace in search under domeborro begins with an H. I believe they’re for moist desquamification too, but never had to use any myself.
Welcome to OCF! Im very sorry you are facing a major surgery in your near future! Im sure you must be very worried thinking about the surgery. Waiting is never easy but staying super busy will help pass the time.
Im very sorry but we're a group of oral cancer (OC) patients and caregivers, frequently we do not have knowledge or info about specific health concerns, especially non-cancerous ones. I cant think of anyone recently who has had this exact procedure done. When doing a couple searches, Ive come up with a reputable website and an OCF thread from 2012. Im sorry that I dont have more helpful info.
I know I'm late in responding to this --- but I am so glad to know there is a Day dedicated to this Awareness! Thank you, Paul B .
One of my otolaryngologists is the Director of Voice & Swallowing disorders . For many years he just did my esophageal dilation ( because Gastroenterology had trouble with perforating me). But now, he is one of my oncology surgeons as well ( not my Primary surheon, though). Anyway, he rates my Speech as a 3.0, on the dysarthria scale.
I have a Moderately Dysplastic lesion right beside my vocal cords, in the left side Piriform Fossa. He did Laser ablation surgery to it in april, and he recently scoped me and it's still there . No change . So, eventually I have it done again. My invasive SCC had already recurred in my Floor of mouth & reconstructed tongue Flap-- I surely don't want it down my Hypopharynx as well..... He is hoping the Laser surgery will keep it at bay.
Voice problems are terrible .... Many of us here know all the various implications of having this problem! Unfortunately...
Welcome to OCF, Cliff! You have found a great resource made up of oral cancer patients/survivors and caregivers who share their experiences with each other. We all understand what you are going thru.
A complete recovery takes most of us 2 years after finishing rads. Some members over the years have reported noticeable improvements with their saliva past the 2 year post rads mark. Hopefully you will be one of the members who took a little longer to complete your full recovery.
Im very sorry to read about your long term after treatment problems with saliva and your tongue feeling burnt. You are not alone!!! A great many oral cancer (OC) patients/survivors have ongoing health problems, some arent noticeable while others can be life changing problems. Its 12 years since my original date of diagnosis and I still struggle with some issues that many other long term survivors dont mention. The lack of saliva for most OC patients stabilizes before patients hit their 2nd year mark of finishing their cancer treatments. Almost everyone notices they now produce less saliva but almost all have greatly improved since they first finished their rads. This can also have an impact on why your tongue is feeling like it is.
Many who suffer from lacking enough saliva have found help with chewing gum or hard candy that contains xylitol. Theres a newer mouth rinse on the market that some have mentioned as helping with their low saliva production. You may also find some help with taking a prescription medicine called pilocarpine. Sleeping with a humidifier may help as Others have found some over the counter lozenges that sticks to the roof of the mouth as it slowly dissolves (helps overnight). Yesterday in the pharmacy I noticed the small tablet thats stuck to the top of a patients mouth was in both brand name and generic of the chain drug store I was shopping in. I figured seeing it as a generic means it must be a big seller. The only other thing I can advise is to take impeccable care of your mouth by brushing and flossing after every meal, using a tongue scraper and using a water pik (on its lower settings) 2x a day (with warm water and some non-alcohol mouthwash) to get anything missed. Also swishing a combo of one cup warm water, 1 tsp baking soda and 1 tsp salt for about a minute 3x a day should help your mouth retain the right Ph balance which could help make your tongue feel batter. If you havent already discussed this with your doctors you probably should. They may have something else thats new to help with this. Some OC patients have tried acupuncture with mixed results reported.
I know it doesnt help but you are NOT alone with this. Having dry mouth is something almost all oral cancer patients who underwent radiation treatments struggle with for months after rads, some struggle for years. This is known around here by us old-timers as joining the water bottle carrying club.
I know you have been having a rough time. Without any recent posts, Im checking in to see how you are doing. I know how difficult rads can be and how much worse it gets as treatments continue. Please update us when you can. We're all in your corner rooting for you!!!
On your other post, Brian replied to you about immunotherapy. Im sorry but I dont have anything else to add to what Brian has written.
Brian is much better informed about immunotherapy than almost everyone here. His background includes being a member of the National Cancer Institute Oversight Committee on Immunotherapeutics in H&N Cancer. Im sure you will find his info helpful.