Vulva cancer

Affected by VIN (a pre-cancerous condition) or vulva cancer? Join this group to share experiences and ask questions to people who understand what you're going through.

recent radical vulectomy with lymph node removal both groins

gizmom
Posted by

Hi I'am new to this site and looking to speak with others who have had vulvar cancer. I recently had my second surgery due to the fact that the first one did not have clear margins, My second surgery did have clear margins but one bad lymph node involvement. I'm not sure if I will have radiation for this as of yet because I will need an MRI first to determine the results. I'am 57 years old and have never had any problems until now. Please let me know if anyone has had a bad lymph node and if you had radiation.

thank you

VJ020
Posted by

Hi Gizmom,

I've been diagnosed vulvar cancer Squamous cell carcinoma May last year. Had 2 surgeries. Same reason for second one. I had two bad groin lymph nodes on right side shown on pet scan and confirmed by ultrasound-guided needle biopsy.

My treatment was 6 weeks radiotherapy 54GY both groins and pelvic area + chemotherapy Cisplatin once a week - low dose.

Your treatment can be different depends where and what kind of cancer you have.

Any questions do not hesitate to ask.

julia mary
Posted by

Hi there, I had Vulva cancer back in 2011 with Lymph node involvement and yes I had Chemo and radiation, not great, but my Consultant was a buckle & braces man, I had pet scan after surgery & that’s when they found spread, wait & see what your MRI comes back with, you never really can tell until you get those results xxxx

gizmom
Posted by

Thank you for your response. I have squamous cell carcinoma diagnosed June. I had all groin lymph nodes removed at time of second surgery. Pathology report was that I had 1 bad lymph node on the left side. Did you have all lymph nodes removed at time of your surgery? My next question is my gyne onc suggests having an MRI in about 3 weeks to check and proceed from there as to have radiation or not. I have taken 12 weeks off work FMLA and will have to return after that time is up. My second surgery was July 29th and I still have my drains in and will return to doctor next week. I'm also afraid that since i do not have any lymph nodes that adding radiation will certainly give me lymphodema and that is scary as i have to work. Thank you so much for getting back to me and I hope you the best.

gizmom
Posted by

Thank you for letting me know about your experience with this type of cancer its really hard to find a lot of information from other women who have been through this and i appreciate any input I feel really alone and afraid at times but I try not to let friends and family know just how I feel. Did you have all lymph nodes removed and do you have any lymphodema from chemo & radiation I work full time and on my feet most of the time 3 12 hour shifts a week. This cancer could have been caught sooner as I told my doctor who is female and did my paps that it was painful when i have sex and would bleed after and her response was i was old and that happens and to get a good lube to help, as a few months passed i felt a hard lump in vagina left side and returned to doctor and she said no big deal it will probably go away on its own. I made appt. with gynecologist who immediately sent me to gyneonc and that was how it was confirmed. My oncologist suggests having MRI in about 3 weeks and go from there. Thank you for the help and wish the best for you and anyone who is going through this.

Lilla M
Posted by

Hi gizmom,

I was diagnosed with SCC after a Batholins Cyst removal although the cyst itself was benign in 2013 at age 64,after developing a node lump which was originally thought to be infection but after PETscan and ultra sound guided needle biopsy proved malignancy was booked in for Partial Vulvectomy and Lymphodenectomy. Adjuvant Radiotherapy followed. As someone else has mentioned treatment can vary and best wait on scan results. Wishing you all the best.

gizmom
Posted by

I'am 57 just had birthday July it has not been a good one to say the least, but as the days go by after the surgery I feel a little stronger I  was hoping not to have lymph node involvement and try and move on from this but its just another marathon to finish and with the help and caring of others and for my children I will stay strong and push forward no matter what I need to do. If I may ask you did you have radiation to both groins and do you have any lymphodema from the radiation, I'm assuming you had bilateral lymph node removal. Do you have any adverse effects from the radiation as I'm not familiar with any.

Thank you very much and I wish you the best also

Lilla M
Posted by

I forgot to mention in my last post that I do have Lymphoedema,it developed fairly soon after the Radiotherapy ended but I pushed my specialist nurse to refer me to the Lymphoedema Clinic and was prescribed compression garments.I only had nodes from my left side removed,out of the seven removed four were malignant.

The Lymphoedema is fairly mild and unnoticeable but I religiously wear my tights and look after my skin so can manage it well.I also have some mild PRD,Pelvic Radiation Disease,not everyone develops this though. I’m glad to hear you’re improving from your surgery.

Lilla x

gizmom
Posted by

thank you for replying to my questions I'm very relieved to have someone to talk about their experiences with this type of cancer. I forgot to mention that I live in Ohio and it's hard to find anyone who I can talk about this with. i'am not familiar with PRD from radiation therapy. My sister had endometrial cancer about 12 years ago and she did have radiation therapy and she said she only had minor effects such as diarrhea at times but not much else. I do have another question did they wait after your lymph nodes were removed to do an MRI to see if radiation treatment was needed or not? I was told that is the deciding factor if I will need radiation therapy or not. I still have 3 drains in and it will be 2 weeks tomorrow since my last surgery. The third drain is from my left thigh where they used muscle from that area for reconstruction the cut is very large and very tender. I was also wondering how long until they removed your drain. I will have the thigh drain removed this week but unsure of the 2 groin drains I may need to leave the right drain in longer as it puts out about 40cc still I assume from the hematoma that I had on that side.

Thank you and I wish you all the best and look forward to your reply

gizmom
Posted by

Thank you for replying and if you don't mind could you please tell me if you had groin lymph node disection on both sides and did they wait after your malignant nodes were removed to have a scan to decide if you needed further treatment. I was told even though all lymph nodes were removed and I had one malignant node on the left side that they would do an MRI in about three weeks and go forward from there. I was wondering if any lymphodema or effects from treatment. I appreciate any information that you could please give me at this time. How are you doing I hope you are doing fine and I look forward to hearing back from you.

VJ020
Posted by

Hi Gizmom,

Even I did have 2 bad lymph nodes as I mentioned before I didn't have surgery to remove it. I had just radiotherapy on both groins and pelvic and chemotherapy. My doctor told me that he will remove lymph nodes if treatment will be unsuccessful or in case of reoccurrence. So far 6 month after pet scan shown no disease. I booked for 1 year scan 28th of Aug so fingers crossed.

21st of Aug will be one year since I've finished treatment and just now I've started to recover from it.

Mild lymphedema, nerve damage, mild hip arthritis -pain every day, induced menopause ( I'm 47) vaginal dryness ( painful sex)  is my little price.

Massage, compression stockings, skin care to manage lymphedema.

Physio, Yoga, Treadmill  (2kmX3times a week) - to get relief from arthritis.

Pregabalin 25mg twice a day + Complex Vitamin B- for nerve damage pain. ( Now off Pregabalin )

Laser treatment +Ovestin cream once a week -for vaginal dryness.

There are plenty info to bust your immune system we all need it.

Working full time took 2 weeks off before treatment finished and 1 week after.

Trying to be positive and active as much as I can.

Good luck

gizmom
Posted by

thank you for your response it sounds like you have done your homework and are doing well, I did not realize you were so young so sorry that you had to go through this, but you sound strong and that is great and  I wish you the best. I had two drains removed yesterday and I have the third remove today. I also have an appointment in two weeks to talk about radiation treatment risks and benefits. I will update as I find out what treatment I will have next.

wishing you the best

gizmom
Posted by

Hi just returned from radiation appointment and he suggests 5 weeks of radiation therapy to both groins and pelvic area. I'm not sure why they did not mention having a scan to check before as I had good margins on vaginal area and only 1 malignant node. I'm fearful of this treatment and what it will mean for the rest of my life. I wish you well. 

Thank you

gizmom
Posted by

Hi Lila M

I just found out today that I will have 5 weeks of radiation treatment to both groins and pelvis. I was wondering why the pelvis area when I had good margins and also why no scan to see if spread. I had 1 bad node and now I'm more confused than ever. This worries me as I work full time and can not give my job up as I need the health insurance or I would work part time. I would appreciate any input that you may have and I wish you well.

Thank you

Lilla M
Posted by

Hello gizmom,

I’m afraid I can’t answer your question simply enough,I can only give you an example of what I experienced.

I had lymph nodes on one side removed and 4 out of 7 were malignant.My surgery was successful and had clear margins but I then went on to have five weeks of Radiotherapy.A belt and braces effect if you like,to clear out and exterminate any rogue cells left behind!!

Please bear in my mind this a UK site and the situation for yourself will be different to ours with our wonderful NHS service  

I wish you well and will be happy to answer any particular question you have.

Lilla xx

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