Hello Friends!
As you can see from my signature, I was originally diagnosed over seven years ago with SCC of the upper gum. I have had three recurrences and may be facing my fourth. I had my recent check-up with the surgeon and there is an area where I've had surgery and radiation which has some ulcers which are not healing. They've been painful for awhile, but we thought it was related to the oral prosthesis I wear to replace the portion of the upper jaw which has been removed. The surgeon is concerned that it might be a recurrence and wants me to return in 6 weeks for a possible biopsy. In the meantime, I'm supposed to leave the prosthesis out as much as possible to see if the healing improves.
As all of us who have had radiation know, it is difficult for radiated tissue to heal, so even the biopsy could cause a spot which has difficulty healing. I will be discussing all my options with the surgeon in six weeks, but I would like to hear from some of you who have had procedures after radiation, what types of problems you experienced in the healing process. Also, what types of non-surgical options have you all undergone? I am very healthy otherwise and lead a full life, but further treatment and it's ramifications could do much to change that.
I've read that being HPV negative as well as a non-smoker, gives me a worse long-term prognosis, in some respects. If this is another recurrence, I would like to make decisions concerning my treatment options based on the quality of life moving forward. Emotionally, I am fine as I have a strong faith and I am blessed with a loving and supportive family. So I am prayerfully weighing all options (including refusing further treatment) if that appears to be the best option. Thank you for your input as I value the experiences and wisdom you all have gained on this journey.

I’m sorry to hear of your troubles, Karen, and I hope it’s not cancer! To me, 6 weeks sounds a long way off! Although I understand your biopsy concerns, it’s heading in that direction unless there is spontaneous healing? I’ve had a number of recurrences, 7, and believe my quick diagnosis, treatments, were helpful, although after my 2nd recurrence, I had a three month delay to start treatment, which wasn’t a good idea, and may have had an impact later on.

It’s hard to say being HPV negative and a non smoker is worse, it’s possibke? I know of both types that have similar difficulty. Try not to worry about that now. Take one day at a time, have a biopsy most likely, and see what your options are. I believe there’s always something for someone, and if it’s not cancer, better yet!

Good luck!

NOOOO!!!! Oh my goodness, I am soooo very sorry you are going thru this!!!! Recurrences are so mentally defeating, even the suggestion of a recurrence by a doctor is not easy to process.

It sounds like the 6 week delay is to give your mouth time to heal and if it does then a biopsy isnt necessary. How about trying a second opinion? If this would turn out to be cancer then you dont want to delay 6 weeks before a biopsy. Then another few weeks to get the results and create a treatment plan. Id think it would likely be 3 months before anything was done to treat the area if it would turn out to be cancer. Of course this is just my non-medical background thinking of how long these things can take from discovery until the cancer is eliminated.

Do you see an ENT? I suggest getting checked by an ENT to see what they have to say about waiting 6 weeks before doing a biopsy. Ive been in a similar situation where my doctor gave me 3 options, he let me decide which I wanted to go with... The first option was exactly what you currently are doing, waiting a few weeks to give the area time to heal before doing a biopsy. Since my area of question was just like yours and in a place where its been radiated having it heal takes a very long time. My second choice was to try antibiotics and doing extra care by alternating using peridex and the warm water/baking soda/salt rinse several times a day and getting rechecked in 2-3 weeks. The third option was not to wait, just do the biopsy right away. After being part of this group for several years it made my selection pretty easy... take the biopsy immediately. I then had the choice of how I wanted the biopsy done. Either do it right on the spot without numbing or I could have had the area numbed. I also could have scheduled the biopsy to be done after I was put into a light sleep but I would need someone to drive me back and forth after being sedated. I selected do it right then and there without any numbing. I always hated being numb and not knowing if I was drooling. Pretty embarrassing when you are out in public! I made a quick stop at the grocery store then the pharmacy and thankfully the pharmacy tech whispered to me to take a peek in the bathroom mirror. I had blood running down my chin and onto my clothes. Oh what a sight I must have been that day!!! The biopsy sample was only a teeny-tiny sliver of tissue. It was so small I couldnt believe anything would be able to get discovered by that small of a sample. Ive had so many biopsies done, luckily most were non-cancerous.

I completely understand everything you wrote about your options if this turns out to be cancer again. Ive been in that exact position myself in 2009. Before making any decisions regarding the future first find out if you must make those difficult choices. Im the kind of person who always likes to be prepared so I do understand your thinking. But for right now... try your very best to do this one step at a time until you know what you are dealing with. If its not cancer, just an area that isnt healing after rads then you might benefit from doing hyperbaric oxygen treatments (HBO). Its kinda a pain doing them but they really can work wonders, at least they did for me. You have nothing to lose by giving HBO a try. Another idea is to see a wound specialist. Ive been to one and was pleasantly surprised at how many things they try to make patients heal. The wound doctors should know all about radiated tissue not responding like regular tissue and have ways to help the healing to speed up. One other idea is (check with your doc first) adding high protein whey powder to your drinks to help up your daily protein intake to boost your healing capabilities.

I wish you all the very best with this!!! (((HUGS))) Please let us know how you make out.

Thank you Paul and Christine for your quick responses! You both have been through so much, and I value the wisdom you've gained through your experiences.
I agree with you both that quick intervention is best, but I also don't mind holding off a bit as I have a history of these types of sores coming and going. My husband is taking pictures every few days so we can see if there appears to be any improvement which would give us hope that the biopsy is not necessary. Like you, Christine, I have had those biopsies done in the office without numbing. Although not pleasant, I'm not afraid to have that procedure done again, I just don't want the raw spot in an area that has so little tissue left, if it's not necessary. I need to be able to wear the prosthesis in order to eat and speak and I worry that an area which can't heal, right where the prosthesis fits, would make life extremely difficult. I will try the mouthwashes again to promote the healing and also up my protein intake as you suggested. I know I need to not get ahead of myself, but if it does turn out to be a recurrence, are there any other non-surgical interventions that you all have experienced or heard about? Although I have complete confidence in my team at Stanford, I would definitely be open to a second opinion if this is another recurrence. I am in California, but would be willing to travel if there are cancer centers you all know of that have specifically dealt with this types of recurring SCC. Thanks to everyone willing to share their experiences!

Any of the comprehensive cancer centers (CCCs) should be the most experienced in treating complex cases and recurrences. The top CCCs for OC are MD Anderson and Sloan Kettering (at least Im pretty certain they are the top 2).

After everything you have been thru, a recurrence is the last thing you need. Usually for patients who have a recurrence and have already been thru rads surgery is the go-to treatment for recurrences. Being that you had rads several years ago you might be ok to do rads again. Ive known a few people who have been thru rads 3 times. Of course this is very rare and is on a case by case basis.

Thanks again Christine! I will let you all know what we decide to do

Hi Everyone! I wanted to follow up on my previous post to let you all know what's been happening. I had a punch biopsy for a small area that was in the region of previous surgeries and radiation. And yes, yet again, I have a recurrence of SCC. I had an MRI yesterday and the doctor will present my case at the tumor board on Monday so I will know more after that in terms of proposed treatment. My options are limited because of the prior radiation and lack of tissue in the area. I don't want to get ahead of myself before they give me their proposed plan of action, but I would like to read up on free flaps if anyone knows of a good scientific article. I am blessed to be surrounded by loving family and friends as well as my strong faith so I am not shaken by this new revelation, but I do like to go into every treatment informed and aware of the current science available. Thank you all for any info you can provide!

NOOOOO!!!!! How I detest when this happens!

Im so very sorry you are going thru this again. Thats absolutely the worst feeling in the world knowing you are sick again.

Not all patients are limited to having rads only one time. This is on a case by case basis with tumor location and how long ago you had rads will be part of the deciding factor. The patients who are able to do rads again usually will have a smaller dose so its not quite as hard to get thru. Im very glad you are at a CCC and have an entire team working together to create your treatment plan.

Im sorry but I do not know of any scientific published studies on free flaps. Off the top of my head, the best person for this would be Brian Hill or Paul might have that sort of info. I'll check with Brian and hopefully Paul will be around soon so he can help steer you to the free flap info.

Hang in there!

Thank you Christine! You are always so quick to respond with empathy and helpful information! I will PM Brian to see if he knows of any articles that might be helpful. Trying to google topics related to oral cancer aways result in viewing such disturbing images that I prefer getting the straight scientific information! Thank again!

Teacher Karen,

I’m sorry to hear it’s a recurrence, as we were hoping it was something else minor!!

Yes, I had several flaps done. The first was a Pec Flap for protection of the carotid artery after surgical removal of tissue, the second was a Buccal Flap for closure after debriding for ORN in the 3rd molar, and lastly a Fibula Free Flap for osteoradionecrosis. The only one done intraorally was the buccal flap as the rest were done via access on the outside of the jaw and neck.

I looked in my records for free flaps, which is mostly done instead of pec flaps these days for certain cases, but I only find one article pertaining to it, which is odd as I try to save everything, so I must have them filed under something else out of 4,000 or so.

I can post what I have regarding flaps, but its lengthy, and it has a few explicit surgical pictures. I think it has listed almost every kind of flap around, each stating the positive and negative aspects of each.

I hope this helps some, and will continue looking!

Thanks Paul, I would love to read that article! I will PM you my private email in case that's an easier way to send it. Thanks again!
Karen

I hope you can open it. It’s a pdf file.

free-flap-2002-05-slides.pdf

This is not it, but close! I think this may open!

https://www.utmb.edu/otoref/grnds/Free-flaps-041020/Free-flaps-041020-slides.pdf

Thank you Paul! Interesting reading! I find it miraculous what they are able to do in these intricate surgeries! I feel this has helped me better understand the process, should flaps be in the mix of possible procedures the doctor recommends on Monday. I'll keep you all posted!
Love,
Karen

I haven’t given up lol. I’ll try to email it! I was thinking it couid be something else too. It happened to me a few yeass ago for a recurrence with procedures I never heard of before.

All the best!

Hello Again Friends,
I thought I would update anyone interested on this continuing recurrence journey. The biopsy of the maxillary area (previously resected and radiated) was positive for SCC. The MRI did not show the tumor, but that's usual for me as all my tumors have been so small they are not easy to detect on scans. (A good reminder to all of us that biopsy is the only definitive mode of diagnosis!) I will have a full body PET tomorrow and further discussion with the surgical oncologist about the options he's and the tumor board are proposing. The good news, no flaps in the conversation. The not so good news is that they would have to resect about half of the upper palate because of margin issues and the prior radiation, and thus, healing issues. I'll know more tomorrow night, but my questions for you all are:
1) How has the quality of life been for those of you with parts of your palate removed and the need for a resulting obturator? I have had a prosthesis for 7 years, since my first surgery removed the the section of the upper jaw so I'm used to that, but this would definitely involve going into the maxillary sinus. I don't care as much about the eating issues as that is already compromised, but more about communication.
2) I will be meeting with the medical oncologist about clinical trials at Stanford, but do any of you know of any or experimental treatments going on elsewhere in the country, that might be interesting to look into? I've been researching different cancer centers, but I'm one of those 7% that are more unusual, and thus, harder to find others with my situation.

Thank you to anyone who wants to chime in here. I know none of us are doctors, but there's a wealth of experience on this board and I would love to hear from you! Thank you do much!
Love,
Karen

Hello Friends!
I just posted a new thread in the Forum for Eating, Speech, Swallowing Issues. Since my recurrence as been confirmed and my surgery date set, I would appreciate any information and personal experience you all have with adjusting to obturators related to speech and eating. Thanks!
Love,
Karen