New to this forum and cancer!

Hello Hockeygirl,

I was diagnosed with vulva cancer in April 2022, had a nightmare time with my local hospital and my case was taken over by a London hospital. I too had a WLE and my surgeon did not like the look of the skin on the other side so he removed that to. I was kept in hospital for 4 days. Unfortunately due to my operation being cancelled ( I caught covid) my tumour had grown to 2.8 mm and even though they had clear margins I had to have a second op to remove Lymph nodes. This time I was in for 5 days. Pleased to say results were all clear. I have check ups every 4 months at the moment and hoping hat will change to 6 months after august.

You can always talk to the nurses on this site if you want any help and you should have a dedicated macmillian support nurse at your hospital. Mine was fantastic and when they was going to keep me in a extra day because pharmacy had not done my meds ( I was so upset) she came to the ward and had it all sorted in 10 minutes. 

Hope all goes well for you in July and if I can help please just message me.

Sharon

Hi Sharon,  

So pleased that your results at the moment are showing you are clear of this awful disease.

Thanks so much for your encouraging words.  I am really concerned about the lymph node surgery.  The two biopsies I’ve had were excruciating.  It’s planned that I have the radiology dye the day before so they can locate prior to the WLE surgery the day after.  I wondered, did you stay in longer because drains were fitted? I haven’t read about anyone’s experience with these.  I really appreciate you and others taking the time to share your experience, it certainly is helping me.

Hi

i I found that the biopsies were more painful than the surgery.  Before my op I had the iodine scan to check if the cancer was anywhere else.  I did have drains and I think they was a new design because no one knew how to empty them and the nursing staff told me to ask my surgeon when he did his rounds! You can imagine how that went down I will just say after he left me I had 3 sister and 2 staff nurses sorting it out. Everytime there was a change of shift they had to show them how to empty them. Yes that’s why I was kept in and as soon as they was removed I could go home.

i will say my biggest fear was lymphoedema, and a bit of advice as I did develop this is move as much as possible after the op, do as much exercise as you can I.e. when in bed keep moving your legs just gentle moves like moving your foot up and down. I also gentle masaged the tops of my legs just to stimulate the lymph fluid so it fines another route. I developed a golf ball lump in my groin on one side but I had been offered complementary medicine at the hospital and had reiki healing. I believe this along with reflexology plus you can have a special massage to help with the drainage of the lymph fluid, I paid privately and only had 1 massage cost was £35.00. When I went for my next check up it had disappeared and my consultant was amazed.

If there is anything else I can help with or share my experiences please just message me.  I know what your going through as this cancer is rare and I had no one to talk to because I had not found this group.

good luck and please let me know how you get on. X

Hi, you mentioned a lump in your groin, was this from removal of the lymph node’s as I’ve got hardened tissue along my scar in my groin area approximately cm wide and along my groin area scar ? I am under the lymph clinic and wear a pressure stocking during the night to help with lymphoedema but I’ve noticed dimpling in my thighs last night, is this a sign of lymphoedema? 

Hi, the lump appeared after the removal of my lymph nodes. I was going to a charity Helen Rollason Cancer Charity and having reflexology and they told me about a special massage for it. Unfortunately I lived outside the area so their therapist couldn’t do it so I went private.  I did go to the lymph clinic and got the stockings and socks but after about 2 hours my legs were aching hence why I went private. It was the best thing I did.  I did not have any dimpling so I would get that checked out. Your hardened tissue along your scar could be the fluid trying to find another way but again I would get it checked.

Hope this helps.

Thanks for your reply, I will get this checked now as my leg has started hurting where the hardening is and I’ll look into the dimpling with the lymphoedema clinic nurse

Please let me know how you get on.

Hello Hockey Girl, I am also so sorry you are going through all this and all the worry involved.  I was diagnosed last year and had a radical vulvectomy, including clitoris and bilateral lymph node removal.  I was in hospital from Tuesday to Saturday.  All the cancer was removed and the lymph nodes were clear so no further treatment was needed.  A small cyst appeared at the site of the lymph node removal but this was successfully drained.  

Having the radiology die was slightly uncomfortable but no where near as bad as having the biopsies.  My worst experience was when they were marking where the lymph nodes were, using a pen, as I was extremely ticklish and couldn’t stay still.  It wasn’t painful.  I would advise you to take some painkillers before you go, to help you.

After the op I didn’t need any drains in the lymph nodes, one worry less for me.

Please don’t worry alone, feel free to contact me any time you want.