Re-excision after WLE

Hi Ollie2 and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

I'm sorry to read that it's been recommended to have a further operation and I can totally understand your feelings about having to start again.

I'm not a member of this forum but noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.

While you're waiting for replies, it would be great if you could put something about your diagnosis and treatment to date into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

Hi Ollie, I’m new to group, I’ve had a WLE to remove a growth that was not a suspected tumour. It turned out to be cancer so I’m going back in tomorrow for second WLE and sentinel node removal. I wondered how you’ve got on with your journey and how are you healing after sentinel node. I hear there is risk of lymphoedema and I’m quite worried of whether cancer is in margins and nodes. Hope you are doing ok and have lots of support . storm 24

Hi Storm 

I've had my second op and much less invasive than my tumour removal.  Just waiting on the new margin results. I did recover quickly from both ops. First WLE which included the SLNB took about 4 weeks while the second about 2. I travelled to a distant hospital for my op as my local one would have had to do a full lymph node removal which has a high risk of lymphoedema. The sentinel biopsy has a much lower risk and much less invasive. And thankfully mine were negative. Hopefully yours are too. I did develop a small seroma around the groin wound which went after a couple of weeks of massage. The worst part is the waiting for test results. Took ages for mine to come through. 

My family were great ferrying me to distant hospitals and listening to vulva chat. Not a word we'd really discussed before my diagnosis. 

Wishing you well for tomorrow and a speedy recovery. Let us know how you get on. 

Hi,

I had vulva cancer back in 2022, had my op for WLE but tumour had grown and had to have a second op to remove lymph nodes. Luckily I got the all clear but developed lymphoedema!  Was so upset but found a lady that did a special massage and showed me what to do and by the time I went for my next check up, the “golf ball” had disappeared. So Storm 24 please don’t worry, if you do develop it easy to resolve.  Wishing both you and Ollie2 all the best. Would be lovely if you could let the group know how you get on.

Sharon x

Hi Ollie, back home after operation. Feeling tired but glad that it’s over. 4 weeks for results, glad your recovery went well and hope you get good news re margins and that you can get some peace of mind. Thanks for replying to my message, it’s so helpful to hear from others with similar experiences. Take care Ollie2

Hi Sharon, great that you are 2 years down the line and recovered, it’s so great to hear this as it helps me who is in the thick of it to be optimistic. Took 2 sentinel nodes and WLE so fingers crossed for clear results in 4 weeks. Hope you are doing ok post diagnosis, I imagine having gone through this stays  with you, it must change you forever physically, mentally and emotionally. Are you doing ok? 

Hi Storm 24,

it does stay with you, I had so many issues from being misdiagnosed by my gp surgery, errors at the hospital and the list goes on but I’m thankful my case got taken over by the Royal London.  It has changed me as a person, when I complained to my GP surgery and had a meeting they asked me if I would become a member of the patients participation committee to help improve the surgery. So I joined and I can see they have taken our suggestions and putting lots of our ideas into the practice. So that makes me feel good. Up until I got cancer I was working full time and kept saying I was going to retire but that was it, so once it was time for me to return to work I decided now was the time, I had my pension in place so retired early as best decision I have made.  Having cancer certainly does change your way of thinking.  I now exercise more, do aqua classes, aqua zumba, chair exercises and have just started tai chi most of my friends are amazed as I was the last person you would expect to exercise. I eat more healthy too, so I can say im really enjoying life and I feel better now than I have for years.

will keep my fingers crossed for you please let us know how you get on. X

My margins weren't cleared 7/22/22. My surgeon actually retired and due to other circumstances, I could not find another surgeon to clear my margins until 1/29/2024. By then, it had progressed from stage 1a to 1b and the unbearable itching caused lichen simplex chronicus as well. 

Hi Angel 318

That's awful your op to clear margins took another 6 months. Hope all went well afterwards. I was Stage 1B. I've just heard from my surgery consultant that margins now all cleared.

But ironically on the same day as that good news I had a 3 month check with my original consultant and he's found enlarged lymph nodes. So awaiting an ultrasound.

I'd hoped I'd be celebrating successful treatment today, maybe even a much needed holiday. But instead back to waiting and imagining the worst. I had noticed a boney lump under my slnb scar but thought it was because of my previous seroma.  Hard lymph node doesn't sound good. Do get anything suspicious checked. I was focusing on margins and second op and totally missed an obvious red flag.

Sorry to moan but my optimism is waining. It does get very tiring trying to be positive and cheerful so as not to worry family. I realise so many on here have gone through much worse. xx

I just had a lymph node swell up a month ago. I get pet scan results on Monday. I thought I was cancer free since January but apparently I may need another surgery so they want to see how far it's gotten.

I understand completely. My 1st surgery was in 2010. I was 32 with a 5 week old infant. It seems to never end.