Radiation treatment after vulectomy and lymph node removal to both groins

Hi - they did radiation on both groins and entire pelvis on me even though nodes came out clear on scans and post-op biopsies. (We didn’t know was cancer going in so no sentinel node biopsy at initial surgery.). They did this due to the size of my tumor - 4.5cm. With a tumor that size in the middle (in clit), they said very likely microscopic cancer cells on both sides and so needed to do chemo/ radiation to  make sure they got everything. You should ask your radiation oncologist for an explanation for your case. 

My cancer was a surprise as biopsies had showed VIN only and so I was ok with radiation - I just wanted to do everything I could to prevent recurrence. Best of luck to you- treatment hard but doable. Hope you aren’t one of the rare cases like me where they have a hard time finding a drug to combat the nausea with the chemo. (They usually do a few weeks of low dose chemo to help radiation work better.)

hope this helps!  Ask lots of questions and hang in there!

Hi Accountantmom

I was wondering if you have had any problems with lymphedema from the radiation treatments you received. I'am at day five and my leg feels strange and painful on the outer side of my thigh. I'am not sure if its normal to have problems this early on. I have had lymph nodes removed 18 total for both sides and 1 malignant node. Did they tell you what your iodizing dose of radiation was at the time. I think I will ask at next appointment as i was not told. I'm not sure how important this is or if its just a standard that is used for all. I hope you are doing well and thanks for you input it really helps. I look forward to hearing from you soon.

Thank you

Gizmom

Hi Gizmom-  No, I haven’t had any lymphedema issues with the radiation. I didn’t have any lymph nodes removed and so that made the lymphedema less likely. I don’t know what the dose was - I think they told me but I don’t remember.  My radiation oncologist said my dosage was “middle of the road” as far as area radiated and amount. It was 28 days. I did have issues with diarrhea and pretty severe folliculitis and so don’t stress about that too much as if will eventually improve As the hair follicles regrow they can get infected and cause several very painful abscesses over a period of a month of two.  I had to have 2 rounds of antibiotics and be very careful about showering quickly after exercising, bathing twice a day, etc to get them to clear up. They finally have but at first it was very concerning and very painful. 

Best of luck - let me know if you have further questions. I am happy to help if I can. 

Hi, forse of all sorry for my words. I am not able to use your language because I don't speak English. I did not find forum about vulvar cancer in my language. I am having radiotherapy (this is my 4th week, there are 5 week in total). I had radical vulvectomy and Seven removed lympho nodes (3 of the groin and 4 for the other one). I think that the number is too low. Unfortunally margins are not free (meatus urethral is involved) and one lynphonode is involved. I am having diarrhea

I would like to find someone to speak about my situation because it is rare

Thank you

Girl - I am so sorry for your situation.  Don't worry about your writing skills - I understood just fine.

I did not have lymph nodes removed but I did have a radical vulvectomy, followed by radiation and chemo.  I live in a large US city and feel I received extremely competent care.  It sounds like you are concerned about the type of treatment you are receiving - is that right?  I have a few suggestions for you:

- If you are at all uncertain, I would suggest getting a second opinion.  Even if they don't change your treatment, it will give you more peace of mind. 
- I assume you are being treated by a gynecologic oncologist as well as a medical oncologist and a radiation oncologist?  If not, ask why not.
- I would recommend you do a search on this site for posts by "elmslav" / "Lisa from Michigan" or from Paula.  These ladies have been through many, many surgeries, radiation & chemo and I know Lisa has posted all of her hints for taking care of yourself through all of these things.
- In the U.S., there is a fairly defined treatment protocol which depends on the size of your tumor, the staging of the cancer, lymph node involvement, etc.  I have attached a pdf of it below, as well as a link to a cancer.org website that may be helpful.

https://community.macmillan.org.uk/cfs-file/__key/communityserver-discussions-components-files/183/2019-NCCN-guidelines-clean.pdf

Sorry, one more thing.  You mentioned that your margins were not good.  Did your doctor discuss doing a second surgery with you?  The treatment protocol is to first try to get good margins if that is at all possible.  If your urethra is involved, it may or may not be possible. This may not be relevant at this point because any 2nd surgery should be done before radiation commences as radiation makes surgery afterwards more difficult.

Kind regards