How to handle pelvic & vulva radiation after vulvar cancer

Posted by jakofin @jakofin, 2 days ago

I had vulvar cancer last year. I had a partial vulvectomey and lymph node removal. They found cancer in the lymph node so I had another surgery to remove more. At my 6 month follow up in March, the pet scan showed cancer in lymph node on the other side. So I had another surgery. So now my oncologists recommend 6 low-dose chemo treatments (cisplatin) and 30 radiation treatments. I feel really scared and anxious! Can anyone give me tips for dealing with the side effects, like skin burns.... anything that helped to get through it?
Also, I know getting enough protein is important. Do you have low volume, high protein ideas that helped you?
I go from resigned to it to freaking out and not sure how I'm going to get through it!
Thank you for any help!

Interested in more discussions like this? Go to the Gynecologic Cancers Support Group.

jade2026 | @jade2026 | 1 day ago

I’m in a similar situation, trying to decide if I should have all my lymph nodes removed before radiation and chemo. I’m very concerned about the radiation of the vulva because my cancer is so close to my urethra. My radiologist assures me that most women are able to get through the radiation without long lasting effects. But, I second your concerns and I’ll be thinking about you.

Helen, Volunteer Mentor | @naturegirl5 | 1 day ago

@jakofin Your post about vulvar cancer involving one lymph node and then the other must be so frightening for you. And now the recommendation is for radiation therapy. There have been other discussions on vulvar radiation therapy here in our support group.

I will search out those discussions but in the meantime why not do the following? Type “vulvar radiation” or “radiation vulva” in the Search box at the top of the page and see what you turn up?

Helen, Volunteer Mentor | @naturegirl5 | 1 day ago

@jakofin

Here are some ongoing discussions that may be helpful to you. I will also tag members of our support group who have experience with vulvar and pelvic radiation therapy.

@bobette1 @kanderstag @andwho

Radiation and chemo for vulvar cancer:

— https://connect.mayoclinic.org/discussion/radiation-and-chemo-for-vulvar-cancer/

Radiation Therapy for vulvar cancer:

— https://connect.mayoclinic.org/discussion/radiation-therapy-for-vulvar-cancer/

bobette1 | @bobette1 | 20 hours ago

I had a partial vulvectomy and then 6 chemo & 30 radiation treatments. It is a lot to go thru but from what I experienced it was worth it. After you go through this I recommend pelvic physical therapy when healed. Happy to answer any questions. Oh and the chemo drug was cisplation. I did not lose my hair either