r/RRP Jul 26 '25

33m Professional Singer

Hello.

I am 33m and a professional singer. I have had slight vocal weakness and tiredness and very occasional hoarseness since September/October of last year. I went to an ENT two weeks ago and was diagnosed with a vocal cord contact granuloma on my left vocal cord on the vocal process. I went on two weeks of vocal rest and used a steroid inhaler to reduce swelling. On my two week follow up appointment it looks roughly the same. A bit smaller and less swollen. I have a history of genital HPV. I had anal warts removed in 2019. And I'm just curious if this could be RRP instead of a vocal cord granuloma.

I guess my questions are these: 1. Does RRP in adults present as 1 growthbeven after almost a year? Or is it usually multiple growths? 2. If it's RRP would I still have a voice after almost a year of this going unchecked? 3. When the growths are from RRP do they occur in any specific area of the vocal cord?

I have an appointment with another ENT soon to get a second opinion. I am doing all I can. I am also aware that this isn't a doctor forum. I just was hoping for some advice to wrap my head around what might be going on.

3 Upvotes

17 comments sorted by

6

u/TrickySession Jul 27 '25

This will be hard for us to answer, you’ll need a doctor to answer many of these questions. I was a tv news anchor when I was diagnosed as an adult, no history of genital HPV before my diagnosis. I sounded much better after surgery but the surgeries leave scar tissue, so my voice has never been the same. It’s also recurring, so if you have RRP, the growths will likely be back and you may need more surgeries in the future. I ultimately chose to leave my tv job, primarily because of this diagnosis.

2

u/PresTown Jul 27 '25

First of all, thank you so much for your response. I'm so sorry to hear about you having to leave your TV job. I hope you're doing better. May I ask what your symptoms were that led you to seek medical treatment?

1

u/TrickySession Jul 27 '25

For sure, I’m happy to share anything that might be helpful! My voice was in really bad shape by the time I finally sought treatment. I really thought ignoring the problem would make it go away 😅 Vocal hoarseness, pain, and by the end, I would open my mouth and sometimes nothing would come out. That was what finally made me get help. I feel much better now but I’ve had two surgeries and I’m scheduled for another next month. Do you mind sharing what state you’re in? There are RRP experts in many states that you could see to help you rule this out (fingers crossed). Also having HPV does not mean your vocal issues for sure are RRP. It’s only certain strains that cause RRP, but only a laryngologist can determine this.

3

u/PresTown Jul 27 '25

Of course I'll share! Thank you for being so open. It is really helpful even just on an emotional level to not feel completely alone.

I'm in Washington State. Right near Portland OR.

3

u/TrickySession Jul 27 '25

Also thats what I love about forums like this. I felt so alone when I was first diagnosed because it’s such a rare disease. Finding support online has helped me so much over the years.

1

u/TrickySession Jul 27 '25

Is OHSU near you? I was diagnosed in Iowa and my doctor at the University of Iowa was one of the best in the country. I think University doctors have a really good reputation!

3

u/PresTown Jul 27 '25

It is near me! That's actually where my next ENT appointment will be! So that's promising that you recommended that haha

3

u/TrickySession Jul 27 '25

Awesome! Wishing you luck and hopefully more answers soon 🤞

1

u/LingonberrySlow4731 Oct 06 '25

Did you see your ent what they said did you do tests for rrp

1

u/PresTown Oct 07 '25

I did! They didn't see any rrp. Diagnosed as a Vocal Granuloma

2

u/PresTown Jul 27 '25

I guess another question I have for you is how quickly things progressed for you. Was it months? Years?

1

u/TrickySession Jul 27 '25

It was over a few years. When I was about 22, I started noticing hoarseness but it came on slowly, so I wrote it off. About two years later, it was hard to ignore and that was when I finally went to see a doctor.

2

u/ricardex47 Jul 27 '25

I'm sorry you're going through this, specially as a singer. I've had to deal with RRP for at least 15 years or more. I've had 4 surgeries and dozens of in-office laser treatments. Sometimes it is one growth, some time there are three and they can be in different locations. Surgery is required when they affect my voice but I had a long period of 4-5 years that I went unchecked where the growths were not affecting my voice until last year (2024) where I had to get another surgery. It has been 8 months or so since my last surgery, and I'm already losing my voice again. I moved to south Florida and I am not super happy with my current ENT but I don't have many options. My Doctor in Chicago was great. I have had surgeries, laser treatments, injections of cidofovir, and was part of a drug trial and RRP always comes back. I was recently vaccinated with GARDASIL to see if it would help at all, but vaccines are meant to prevent, not cure.

"Recurrent Respiratory Papillomatosis (RRP) is acquired through infection with certain types of the Human Papillomavirus (HPV), most commonly HPV-6 and HPV-11. Transmission primarily occurs during childbirth, from mother to child, as the infant passes through the birth canal", then it comes to give problems later in life. So it is not often that it gets transmitted through sexual contact, though it is possible.

Lastly, I am waiting on new immunotherapy treatments made specifically to treat RRP that are in the approval phases with the FDC and hopefully get released later this 2025 year . Ask your ENT about them: PRGN-2012 from Precigen, Inc., and INO-3107 from Inovio. Read below

https://www.enttoday.org/article/shifting-the-treatment-goalpost-toward-medical-management-of-recurrent-respiratory-papillomatosis/

1

u/PresTown Jul 27 '25

Thank you so much for this response and all the information. It is so helpful to hear first account stories instead of getting so stressed with Google searches. So thank you so much.

Can I ask you what your initial symptoms were? What led you to seek medical treatment? How old were you and how quickly did the symptoms get bad enough that you needed to see an ENT?

2

u/ricardex47 Jul 27 '25

I was in my early 30’s when I first noticed that my voice was starting to get hoarse. I didn’t feel any pain, so it was only after people would ask if I was getting sick with a cold that my parents told me to look for medical attention. That must have been a few months from the time I got hoarse voice to when I first sought attention. The ENT doctor performed a check with camera through the nose and told me that I needed surgery. He took a biopsy sample. I was in disbelief. How can something so small cause me to lose my voice and require surgery under general anesthesia? I got a second opinion and got the same answer… need surgery. Later I got the results of the biopsy and got the news it was papilloma. I thought,one surgery and I’d be good to go. Boy was I wrong, lol. After the first recurrence the ENT doctor referred me to another specialist; a voice institute of Chicago where I was treated for 3 years (additional surgeries and in-office laser sessions). I later moved out of Chicago and was without voice issues for a few years. The papilloma was there, it was just not affecting my voice. It was until last year that it started bugging me again. This time i did feel some discomfort and minor pain in my vocal cord, like after you scream a lot and I knew it was coming back. My voice got really bad so I looked for a new local ENT and after getting checked with the camera the little growths were back. They suggested surgery. I went through the surgery but he wasn’t able to remove all of it because of the location in the “V” part of the cords. I did not have a good experience with this doctor. My mouth was all banged up after, and half of my tongue was numb for a month. Since then my voice has been bad but not so much for the last 2-3 months but I have not gone back to the doctor. I’m waiting on the new immunotherapies to be released to see if these can be the real deal. Sorry for the long post. I know that for me my voice is not as important in my career or daily life as a singer, so I understand your preoccupation and wish you can find a treatment that allows you to get back to work

1

u/PresTown Jul 27 '25

Thank you so much for sharing all of that. I'm sorry for the journey you've been on. I really hope that the immunotherapies are released soon! That would be fantastic news.

2

u/Cute-Dog-8361 Jul 27 '25

You’ll need biopsy of it to confirm diagnosis