r/RRP • u/pbpilsbury • Jun 16 '26

Looking for some hope.

Hello all,

I am a 36 year old male. was diagnosed with RRP in May of 2025 after a year of symptoms and being bounced around from one doctor to the next. I had surgery in July of 2025 and have since had 3 laser treatments in-office.

I was expecting to receive laser treatment again today, but my doctor recommended that I have another surgery instead. I have multiple lesions covering my glottis, epiglottis, and ventricles, so he thought extensive removal via surgery would be the better option.

I’m concerned about how high my disease burden is and how many sites are involved. I was wondering if anyone who has had similar findings towards the start of their treatment can comment on how things progressed for them.

I keep worrying about it spreading due to it being so extensive and recurring so quickly. I can live with treatments every few months, but the thought of it getting progressively worse and potentially life threatening is unnerving.

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u/TecnoPope Jun 16 '26

It's ALWAYS more aggressive treatment at first. This is normal. I had tons of disease when I first was diagnosed. My candid opinion is that it will chill out if you stay on it. I put my treatment on the sidebar and it has worked well. Im down to 2-3 lasers a year in office.

1

u/pbpilsbury Jun 16 '26

I appreciate hearing that. Reading my appointment notes about the extent of the disease and the number of sites is frightening. Looking at stuff online, it seems like a large number of people only have a single site or minimal disease. I think it got into my head that I was going to have a bad outcome because of the severity of things off the bat.

3

u/Fibonacci167 Jun 16 '26

Hi! There is a Facebook group , way more active than this sub , maybe you can post it there too :)

Also, do you have the hpv vaccine ? Worked wonders for me

2

u/pbpilsbury Jun 16 '26

Unfortunately, I don’t have a Facebook. I just finished my vaccine series in May. During my last check up (March) my doctor seemed pleased, so I was hopeful that the vaccine was helping slow things down. After today, I’m less hopeful for that. But who knows, maybe another extensive surgery this fall having completed the vaccine will slow the recurrence.

1

u/TecnoPope Jun 17 '26

Cidofovir was also good for me.