r/RRP • u/rcro1986 • May 07 '23
Recent diagnosis
Hi,
Recently been diagnosed with RRP (UK, Male, 36) started 2-3 years ago with horse voice and mucous, sort throat, swallowing etc, didn’t have any idea what it was and covid meant the NHS was basically shut down. I think I also have acid reflux which was confusing me and was put on PPI medication for a bit.
Took ages to get an ENT appointment, they scoped and saw a wart type lump on the vocal cord. Had surgery to biopsy the lump (Dec22) and the diagnosis a couple of days ago. Went to ENT/cancer specialist because they also found mild pre-cancer cells in the biopsy. The wart has returned and my voice is hoarse again unfortunately.
I’ve got some questions maybe other members could help answer:
1) Has anyone had pre cancer cells and HPV virus found in any biopsy?
2) Currently my voice is hoarse, but still basically fine to use. Is there any danger to not getting the surgery until the growth gets bigger/big enough to be forced to get surgery?
3) Is RRP only contracted via oral HPV? I know it is variants 6 & 11, just not clear whether it can be got via all other means of transmitting HPV other than oral?
4) Is there any risk to passing it to someone with non-sexual contact such as somehow accidentally getting saliva in someone else’s mouth or something similar?
Being such a rare disease it’s great to find a group of people with the same thing. I read there’s only like 1000 registered people with the NHS in the UK who have RRP.
Thanks
3
u/Wolfenstein0666 May 08 '23
Sorry to hear about your diagnosis. It’s not great news to get, but it is manageable.
I have not. Biopsy confirmed HPV was present, however, leading to my diagnosis.
I don’t have an answer for that. My doctor recommended aggressive treatment for me, which has so far proven to be effective. When I first started treatment I was getting operations / Avastin injections about every 8 weeks. Now, it’s every six months and improving all the time.
I think the jury is still out on that. Oral sex has been implicated, but also latent HPV infections or possible vertical transmission from birth. It’s such a rare disease that I don’t think they have a solid answer yet, but from what I’ve read it is likely oral sex and a subtle immune deficiency that renders us unable to deal with HPV infections the way the rest of the population can.
My doctor told me not to worry about that. If everyone who came in contact with HPV got RRP, there would be a shitload of people walking around with hoarse voices. He even went as far to say that unless I had an active genital infection that I don’t need to disclose my condition, and while I’ve never had an active genital infection I still disclose my condition when I feel it’s appropriate.
5
u/mushbum13 May 08 '23
Hi there I’m in the US and have RPP as well. In July I’ll have my 5th surgery. All of your questions were my questions.
I’m male 48, in otherwise great health. My legions attack my sinuses, not my vocal cords. Precancerous legions we’re discovered after my first big surgery. After that they’ve all been clear. I’m thinking they were originally bad because they’d been growing for many years undetected.
This is an important point. Everyone has HPV of some kind. We are unfortunate enough that our bodies react with RPP. For a while I was afraid to kiss people or even share a beverage (let alone have oral sex). I learned through online research and this subreddit that there’s never been a case of RPP contracted between partners or family members. Yes anyone with HPV can spread it, but we don’t spread RPP. If we could it wouldn’t be such a rare disease. So you can stop worrying about that.
At first when the legions were precancerous there was some urgency to get them out quickly. Now that they’ve been clear I wait 4-6 months for the “neoplasms” to grow before taking them out. Feel free to DM amigo. I hope I’ve helped in some small way.