Hello all. I just found out yesterday that my excised polyp came back squamous cell after my 15th surgery in four years. I have been on the RRP websites before this and was looking at possible experimental treatments. While at the hospital yesterday I had a CT scan and PET scan. I do not know the staging yet and don't have results of scans. I am trying to find doctors that have treated this type of cancer with HPV16. A lot of doctors don't even know what RRP is and don't understand HPV papillomas. I am going to see a ENT that treats cancer next week at the hospital, but really want a second opinion. Any ideas Thank You Steve Hurlock Evergreen Co

Since we don't get people with RRP here are a rule, please confirm that you are referring to Recurrent Respiratory Papillomatosis.

I am way out of my league here, but to find an HPV16 involved RRP patient is very rare (somewhere around 2% of cases I think) in my understanding, as this is almost exclusively the realm of HPV 6 and 11. So before I suggest someone/place for you to talk to, would you mind answering a couple of questions?

Are these papillomas recurring always in the same anatomical site or are they in multiple sites? Are they all laryngeal? Are these surgeries to remove a singular papilloma or a group of them, and when removed, are they clearing/excising the papilloma completely, or are they just trying to maintain airway? Is your total history with RRP 4 years?

Brian, thanks for quick response. Yes it is Recurrent Respiratory Pappillomatosis.
It is confined to the larynx area. I've had it four years. At first the paps would come back about twice a year. My ENT that took them out sent me to UNiversity Hospital to their ENT clinic because he was not helping meThe doctor took out more ,pretty much same place on the tip of the vocal cord. After the 6th surgery it was confirmed HPV16 (very high risk as you know) pappilloma. The polyp is just one and surgeries have increased now to every two months. It was just confirmed yesterday Squamous cell. I used to get pretty clear until the last year. There is major webbing going on in the vocal area and my voice is shot. The last polyp was sitting right between the vocal cord preventing any vibration and with the web going on I could not talk with out an amplifier to magnify my whisper. The pap has always been in the same place. They use cold steel during surgery and as of now I don't believe it has gotten into my lungs. The Ct scan showed no advancement into the lymph nodes but maybe some connection to or the term she used was possible anterior invasion of the cartilage (what ever that means). I am doing a lot of research on this so I can weigh my options. Michael Green that runs the RRPF.org website is also trying to find some answer to my questions. Thanks Steve Hurlock

I have e mailed my contact at Moffitt Cancer Center. Let's see what their response is.

This is Maura Gillison's choice in CO. When it comes to HPV, I would trust her recommendations. Out of state opportunities likely also exist, but would probably mean private pay.

"David Raben at the University of Colorado would be a very good person to see. Rad Onc, who will get him into see his whole team."

Brian, thanks I am going to see also Dr. David Raben next week. The only issue that I have researched that radiation can kill the cancer but not the HPV. In some cases radiation speeds up the process of the HPV mutating into cancer more quickly.The two scans, CT and PET showed no other activity outside the vocal area. I still don't know staging until next week. Thank you for your help.
Steve Hurlock

Had a long discussion with Dr. Gillison this AM about all this. She says that there are really very few people that are well versed on what can and can not be done in your situation, and I think a second opinion from the guy she recommended is worth your time, so I'm glad you are gong to pursue that. She also talked a great deal about the Hopkins experience with it all, which has some significant depth to it.... but that is on the other side of the country, and I do not know what you financial, insurance or work related limitations might be.

I'm hoping that you have some more concrete perspectives next week, and you can get on this soon. Early is always better with these things.

Brian,Thanks again. I have some big appointments next week with Doctors and evaluation. I was born and raised in Towson Maryland. Still have family there. If I want to go to Hopkins do you think Dr. Gillison would see me? I have decent health care insurance, United Health Care and I could stay with family if needed.
I will keep you appraised of doctors ideas. You are right, I need to get going on this. Thanks Steve Hurlock. I will update my profile when I know exactly what it is.

Steve, Dr. Gillison isn't at Johns Hopkins anymore � I believe she is in Ohio now. I was treated at Johns Hopkins last year for a recurrence. Excellent facility and staff.

Hurlock- I have had the same issues you have but haven't really posted it to the Board. I presented with papillomas around my vocal cord beginning in 2006. After about 6 surgeries with probably 4 carcioma in situ biopsies my doctor sent me to another doc to discuss radiation. On a fluke a speech therapist noticed during a magnification of my vocal cords that my tonsil looked bad. They took it out and I had carcinoma in my tonsil. It was tested for HPV and was type to be among a few either 16 or I think there were other options that were numbers higher including 18,31,33. I ended up treating at MD Anderson with Dr. Weber. I went there because I liked they only treated cancer and well respected and easy place to find housing while you are being treated. My papillomas have stopped in vocal cord but I now have them in my trachea. MD Anderson has done a good job with me but basically they tell me there aren't any black and white answers. I think Hopkins would be a good place to go, in my research with Gillson there they seemed to have the most research. The doctors I have talked with have told me that normally after a few years papillomas slow down or stop. Mine definitely have slowed but not stopped. I'd like to know if you get more information too though. I'm always looking for more answers.

jeannie,met with 2 different docs this week One a radiation Oncologist,other a cancer surgeon at The University of Co hospital. There seems to be some major differences on the path report.Three different pathologists looked atThere are for sure atypical cells that were not on other reports.There best bet was squamous cell but could not stage it yet. They want to get another opinion. They think in situ also.No one will treat without staging, and the radiation oncologist is getting his own path report. All say they want to wait.The other issue I have is bad webbing from the surgeries.I wish I had some answers for that. It is almost impossible to talk with out using an amplifier.So I am now in a holding pattern.Also I was HPV positive now,for some reason they say HPV negative. That also changes treatment options.Hope to have better info next week. Hurlock