How to handle pelvic & vulva radiation after vulvar cancer?

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.

@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?

@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/

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

I had 8 chemo and 35 radiation treatments. Nine months after treatment I found a new lump and had a partial vulvectomy. Very grateful that the “lump” was scar tissue from the radiation.
I was fortunate that chemo was not bad at all. Talk to your doctor/nurse about anti nausea meds and meds in case you have neuropathy.
Regarding radiation, I think the most important thing is to listen to your body. When you’re tired rest. You probably won’t be able to do what you’re used to doing, but that’s ok. Give yourself a break. The radiologist can recommend lotions for skin irritation. Also, you might want to consider 100% cotton “ boy shorts” underwear. Cotton because it’s soft and breathable, and trust me won’t want tight underwear or pants for that matter.
I did loose my hair and it came back curly. Something’s that you don’t think about or at least I didn’t with the hair loss- I lost my eyebrows, eyelashes (could not figure out why I was having so much trouble putting on mascara 🤦‍♀️
all hair on my face, arms and legs, which wasn’t a bad thing . These are all fixable and temporary. Just remember to take care of you, let people help you and be kind to yourself❣️
One more thing… 8 years a survivor and I still have some curl to my hair. I consider it my reminder to be thankful.
If you have any questions or other concerns, just let us know. That’s what’s great about this site, we all can relate and are here to help.

Thank you all for your replies. I've got a new concern too. I've developed what the doctors diagnosed as cellulitis in the groin area, wrapping around to backside. This is the third time this year! And I'm scheduled to start radiation & low-dose chemo 6/22. Im on bactrim now. I know that radiation can cause your skin to be more suceptible to infections.
I also read that erysipelas is misdiagnosed as cellulitis many times. And maybe it is brought on by lymph node removal.
Has anyone experienced this?

@wheaton
I had a partial vulvectomy followed by chemo and radiation which I completed 2 months ago. I still find it uncomfortable to wear anything but soft athletic type pants or dresses. I have discomfort/ pain and sensitivity in that area especially when I sit. How long after you finished treatment did you feel more comfortable down there?

@jeannea00 it will take a few months, unfortunately there is no exact time. I found that wearing 100% cotton underwear, boy shorts and no high cut really helps. Not the most sexy 😉, but it’s temporary. Also, all cotton on the leg band helps a lot, less irritating than lace. I went through trial and error with this. The things you learn when you’re on this journey! Looser fitting pants also help. Give yourself and your body a little time to heal. You’ll be grateful you did.

@bobette1
Did you have chemo and radiation at the same time?
Did you use something to handle radiation discomfort?

Yes chemo & radiation at same time. They gave me a compounded cream but honestly the only thing that helped was ice packs and laying back in a recliner to take the pressure off.