Hi friends, I was diagnosed with squamous vulval cancer on 6 September 2016. Cancer cut out by wide local excision.
Consultant want to remove groin nodes in both sides. I want to wait and see as lympodema makes depressing reading online.
Any help would be appreciated as I have never known anyone getting this done.
Look forward to supporting everyone here.
What is the proposed ongoing treatment going to comprise? Chemo? Radiotherapy? Did any scans/imaging show any suspect nodes in the groin/pelvis?
Hi Lynora ...just to remove the nodes ...as standard procedure when over 1mm. They are not believing it is there in the nodes...a very small chance. No scans been done, no treatment stated, as would depend on if in nodes, but as I say just a very small chance. I do not know how aggressive the lesion was, so perhaps I need to question this at my next appointment in January 2017. Still waiting on report from Consultant....so I see what that says.
Thanks for replying.
Thats exactly the same as wat i had. They took out all my lymph nodes from my groin.
I had no idea about lymphodemia.
I wont lie its not been easy as i have had celulitis etc but the cancer has gone.
Things have settled down now and i know the triggers for my legs now so its not so bad.
U just gotta think about the risks. Im just glad the cancer has gone.
Good luck xx
Hi Fiona-Mae thanks for replying. Yeah I read up when they mentioned this op. My mum suffered badly with her legs, so I had an understanding of things that can go wrong in legs. Very hard to find out about it too, as not many people will have had this in the UK.
Hope you feel good and strong, and things keep stable.
Oh i had no idea. Its all good in the end tho. Few changes in my life but no point bein sad about it. Things r good ty.
Hope things go well for u xx
I was diagnosed with Vulval Cancer in 2013 after removal of benign Bartholins Cyst and gland and Squamous Cell Carcinoma found underneath,plan was for WLE and Sentinel Node Biopsy however infection and swollen nodes followed,Fine Needle Aspiration showed malignant cells hence WLE turned into Partial Vulvectomy,Lymphodenectomy involved removal of a cluster of nodes,4 out of 7 malignant. This was followed by 5 weeks Radiotherapy. I pushed for referral to Lymphoedema Clinic beforehand,after recovering from Radiotherapy went into class 1 compression having been found to have mild lymphoedema and now after 3years religiously wearing compression,meticulous skin care etc my leg is just 3% larger than my unaffected leg. I do have some sensations such as burning,tingling etc but all very mild and manageable and easy enough to live with.
I would recommend having the Sentinel Node Biopsy rather than heading straight for full removal if possible,of course there is always a possibility of Lymphoedema after that but it seems to me that Radiotherapy does the most damage.
Hi Juliajane it was interesting reading your story. I do not know why they not try sentinel nodes first. Want to take the lot. Maybe it is an aggressive type? I will ask this at my appointment in January. Yeah if all lymph nodes out then radiotherapy it would be worse...been reading that too.
Was this your first cancer there. Any problems before? How often are you attending follow up? If you do not mind me asking.
Think as mine in middle at back of perineum .. Need both groins out.
Yes Monica,this was first cancer there although I had VIN in a different place on the vulva in 2000 but there wasn't the awareness then unlike now,no problems before it just came out of the blue. At first I had three monthly checks in the first year then four monthly and am now going on to six monthly checks. After that it will be yearly with the aim to being discharged from clinic after five years cancer free.
Hi Juliajane it was good to read more on your condition. I would request you not to end the checkups. If I was you, I would continue. I was checked up by gyn/oncology for five years after a borderline ovarian cyst in 2007. I was transferred to gync for ongoing checkups as I was diagnosed in 2010 with lichen scelrosus. I would stay under gncy/oncology now as gync took longer to spot this lesion growing during my six monthly check. So it was deeper, than should be.
I am going to request to be checked by gncy/oncology for all my future years.
Hi Monica,
I had all my groin lymph nodes removed nearly 20 years ago after cervical cancer. It was aggressive cancer so they felt it was wise to remove them all. I got a lot of chemo and radiotherapy and certainly the cancer has never returned. However I do have quite serious Lymphoedema and regularly get attacks of cellulitis. I was not told that this would happen but even if I had I would have chosen removal. Put simply I would rather be alive with Lymphoedema than dead with cancer.
However things have moved on nowadays and I think you are right to ask questions about it rather than just accept it. I would definitely advise you to investage further first.
Good luck,
Marianne
Hi Marianne! Thank you for your post. Wow you have been through a lot. Long time to be free of cancer, what great news this is. I gather your nodes were positive as you say you had a lot of treatment.
Going to GP on Tuesday, so I will see if I can get further information on the type of cancer then. I am surprised no scans done. It must be known it would only be microscopic?
I am going to go to a gncycaelogy support group at the Maggies Centre in mid November. See if I can meet some people there with the genital cancers. This will be a great support, and possibly meet others who have had bilateral groin node dissection.
These sites are very supporting as these cancers rare.
Take care till next time, Monica
Hi Monica,
I know this is an old post, but I do hope you are keeping well.
Last year I was diagnosed with a squamous cell carcinoma after suffering from Lichen Sclerosus for many years,
He removed and found it was slightly deeper so the consultant decided on next op to do a left groin lymphadenectomy and a wider excision on the vulva.
After that op, all came back clear, so we were extremely happy.
I went to Maggies by Charing Cross, the most wonderful place I have ever been to, joined Nordic walking to help my lymphodema and made lots of friends, I have never found anyone with vulval cancer.
I do hope you are still keeping well. Best wishes.x
Just over a week till LSN conference
could i have some advice please
Lymph Assist home care machine.
