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.

Mother has been diagnosed with Vulval Cancer

scared_daughter
Posted by

Knittingnan

Hi

My mum too had Lichen Sclerosus for several years before her first diagnosis with cancer, during that year she had two surgeries to remove growths and another to remove the lymph glands.  This bought her almost 6 years.  Unfortunately over Christmas it came back again and the CT scan, before the op for excision , showed up a shadow on her lung. The surgery was successful in removing the tumour but a PET scan was arranged because of the lung shadow. Sadly this scan showed that mum now has secondary cancer and that it is now terminal.

I don't know of any support groups but I am sure that people on here will support you the best they can.

Please don't worry that my mum's came back as everyone is different and we really can't assume that because one person's cancer develops in a certain way everyone's will. Although devastated that we got the diagnosis we did a week or so ago I count our blessings that we had the extra years with mum. I am now planning to see if I can reduce my working week to 4 days to enable me to spend some extra time with mum.

Sending the pair of you hugs as they are what help us get through.

I will keep an eye out on replies to see if anyone comes up with a support group.

I am so, so sorry about the terrible news that you have received about your mum. Returning massive hugs to you too.

It is so sad that after successful surgeries she has received further awful news. I can't even imagine how you would begin to process something like that. It must be impossible and seem so unfair.

Lilla M
Posted by

I am 68 and was 65 when I went through treatment for stage 2 cancer so I consider it young as well,unlike your Mother though,I wanted to know everything about it and talked about it openly with everyone,even my garage mechanic when he asked if I had had a hysterectomy because of a gynaecological cancer! Wishing you both well x

Cazzi
Posted by

Everyone's recovery rate is different. It depends on the consultant doing the operation as well. Some do separate operations for the cancer and the lymph nodes. I had both mine done at the same time. I was in hospital 3 days. I went back to work after 8 weeks although I do think i went back too soon. The most important thing is that your mum will need plenty of rest. 

Waiting for results of tests is the worst time. Once your mum has had her scans and her cancer has been graded then you will know exactly what you are dealing with.

Myself and all the lovely ladies on here will be able to give you lots of advice to help with her recovery. 

This is such an awkward cancer to talk about. Everyone just assumes when a woman has cancer it is breast or womb. A couple of years ago I registered with a new dentist. I had to fill in a form to say if I'd had any operations. He asked me where the vulva was. You should have seen the look on his face when I told him.

Hope you both have a lovely easter.

Big hugs

Cazzi xx

Scaredaf
Posted by

Thank you, It's just something I will have to deal with. i hope you can find the support on here, often lots of useful tips following surgery etc and at least everybody here knows what your Mum (and you as her support) are going through. Best wishes X

Amberruby
Posted by

Please get all information from consultant write your questions down and write answers down i dont believe my mum was given all options as radiotheraphy just made her last month so painful and she was so distressed.

I wish you mum a speedy recovery if i can help in anyway please ask .


Anya x

mummab
Posted by

I was diagnosed with grade 1B vulval cancer last October.

By the time I saw the consultant oncology gynae cahp it was towards the end of November and the trial for Sentinel node biopsy was due to end at the end of November - and I missed the boat although I was an ideal candidate.

So I had to have bilateral groin node dissection - and the inevitable drains all over Christmas. Op was Dec 19th

And they were all clear - BUT lymphoedema is starting 

I was lucky and also just had a wide excision - though they called it a triple incision vulvectomy. And as need no further treatment at present.
Though it was so close to my anus that they couldnt get as deep a margin as they would have liked.

I had squamous cell Ca and some associated VIN. 

I also had an ulcer which was what caused my GP to refer me to gynae in the first place. It failed to heal which confused my GP - she was sure it was OK but the original gynae said the margins of the ulcer were raised and she was 50/50

All we can do now is be vigilant and hope I get the 5 year all clear.

So sad for your Mum but hopefully all will be well for her too

Angela xx

Kirkhaj
Posted by

I too have cancer of the Vulva, I have had this operated on ! Lymph nodes ... are due out next... I said I was not keen on this as I am only young and do not want Lymphodemia... I have now been given 3 options, the normal action to have the lymph nodes out... 2. The sentinel node trial or 3... the radical scans every 6 weeks to monitor the lymph nodes ...

The choice is mind xxx

Kirkhaj
Posted by

I was told reoccurrence is highly likely... with Vulva cancer .... is this not the case ?

emmaroids
Posted by

Hello lovely. I was diagnosed with stage 3b vulva cancer November 2015 after suffering with lichen sclerosus for 3 years. I had the tumour, which was on my perineum and 20+ lymph nodes out Dec 23rd 2015. I then had to have radiotherapy for 5 weeks alongside 5 chemo session as the cancer was already spreading from1 lymph node. I finished a year ago exactly. I still get tired sometimes, I have returned to work and have started running as this helps with lymphodema. I started getting sore again and had some biopsies took 5 weeks ago. The results were that there was cancer cells there again. I had mri and CT scan 3 weeks ago and waiting results still for this. I've now been referred to an anal consultant as the cancer was near the back end. As ladies have said write everything down that you want /need to ask. I have found that although it's a taboo kind of cancer, i however talk about it to friends and work colleagues as when I got diagnosed everyone presumed it was breast cancer. I think there should be more awareness to vulva cancer, for years I was told it was just thrush not lichen sclerosus. It's fantastic that you're there for your mum and im sure she can't ask for anything more from you. Keep talking about it and I hope your mum doesn't feel embarrassed by it. I'm quite open as to where my cancer was /is. If people don't want to hear or talk about it then tough!! My thoughts are with your mum and you of course xx

Cazzi
Posted by

Kirkhaj

I was told reoccurrence is highly likely... with Vulva cancer .... is this not the case ?


Hi Kirkhaj

I had sentinal node trial. One node out each side. They were found to be cancer free. I have had no problem with lymphodema. It is up to you which option you go for but I am so glad I chose the trial. I have been cancer free for 5 years now and have been told it is very unlikely it will come back. Proof it can be cured.


Big hugs

Cazzi xx

scared_daughter
Posted by

Lilla M

I am 68 and was 65 when I went through treatment for stage 2 cancer so I consider it young as well,unlike your Mother though,I wanted to know everything about it and talked about it openly with everyone,even my garage mechanic when he asked if I had had a hysterectomy because of a gynaecological cancer! Wishing you both well x

That is good that you could be open about it- I think my mum is still coming to terms with the news (as am I) and so not speaking about it makes it less real... We have had the CT scan this week so things are becoming more real.... We are now waiting for the summary meeting next week to tell us more about what is happening / needed. Hopefully the meeting will be as positive as it can be given the situation :-(

scared_daughter
Posted by

Cazzi

Everyone's recovery rate is different. It depends on the consultant doing the operation as well. Some do separate operations for the cancer and the lymph nodes. I had both mine done at the same time. I was in hospital 3 days. I went back to work after 8 weeks although I do think i went back too soon. The most important thing is that your mum will need plenty of rest. 

Waiting for results of tests is the worst time. Once your mum has had her scans and her cancer has been graded then you will know exactly what you are dealing with.

Myself and all the lovely ladies on here will be able to give you lots of advice to help with her recovery. 

This is such an awkward cancer to talk about. Everyone just assumes when a woman has cancer it is breast or womb. A couple of years ago I registered with a new dentist. I had to fill in a form to say if I'd had any operations. He asked me where the vulva was. You should have seen the look on his face when I told him.

Hope you both have a lovely easter.

Big hugs

Cazzi xx

I bet your dentist was mortified that he had to ask when you explained to him!

I agree it is an awkward cancer to talk about but it shouldn't be...I have only told one very close friend and the first thing they asked was 'What type of Cancer is it?' I don't know why I felt so awkward when they asked this but I did.

As far as I know the op is for both the lump and lymph glands at the same time but things will become clearer at our meeting this week.

Easter was lovely thank you- Lovely to spend time with lots of family. Hope you had a good one too!

scared_daughter
Posted by

emmaroids

Hello lovely. I was diagnosed with stage 3b vulva cancer November 2015 after suffering with lichen sclerosus for 3 years. I had the tumour, which was on my perineum and 20+ lymph nodes out Dec 23rd 2015. I then had to have radiotherapy for 5 weeks alongside 5 chemo session as the cancer was already spreading from1 lymph node. I finished a year ago exactly. I still get tired sometimes, I have returned to work and have started running as this helps with lymphodema. I started getting sore again and had some biopsies took 5 weeks ago. The results were that there was cancer cells there again. I had mri and CT scan 3 weeks ago and waiting results still for this. I've now been referred to an anal consultant as the cancer was near the back end. As ladies have said write everything down that you want /need to ask. I have found that although it's a taboo kind of cancer, i however talk about it to friends and work colleagues as when I got diagnosed everyone presumed it was breast cancer. I think there should be more awareness to vulva cancer, for years I was told it was just thrush not lichen sclerosus. It's fantastic that you're there for your mum and im sure she can't ask for anything more from you. Keep talking about it and I hope your mum doesn't feel embarrassed by it. I'm quite open as to where my cancer was /is. If people don't want to hear or talk about it then tough!! My thoughts are with your mum and you of course xx

I am so sorry that you had to go through all the treatment and now have been told that it has come back. That is so unfair. I hope that it is successfully removed for good this time.

I totally agree there should be more awareness about this type of cancer- It is awful that you were told it was thrush not lichen sclerosus! My mum also experienced difficulty initially in getting a diagnosis- thankfully she now has a consultant who seems much more on the ball so I am hoping things are dealt with better from now onwards!

Sending you lots of positive thoughts regarding your new treatment x

scared_daughter
Posted by

Kirkhaj

I too have cancer of the Vulva, I have had this operated on ! Lymph nodes ... are due out next... I said I was not keen on this as I am only young and do not want Lymphodemia... I have now been given 3 options, the normal action to have the lymph nodes out... 2. The sentinel node trial or 3... the radical scans every 6 weeks to monitor the lymph nodes ...

The choice is mind xxx

Sorry to hear that you have been diagnosed with this.

It is good that you are being given a choice of treatment. I hope that whatever treatment you choose it is successful for you and that you are given the all clear soon.

Best wishes.

scared_daughter
Posted by

mummab

I was diagnosed with grade 1B vulval cancer last October.

By the time I saw the consultant oncology gynae cahp it was towards the end of November and the trial for Sentinel node biopsy was due to end at the end of November - and I missed the boat although I was an ideal candidate.

So I had to have bilateral groin node dissection - and the inevitable drains all over Christmas. Op was Dec 19th

And they were all clear - BUT lymphoedema is starting 

I was lucky and also just had a wide excision - though they called it a triple incision vulvectomy. And as need no further treatment at present.
Though it was so close to my anus that they couldnt get as deep a margin as they would have liked.

I had squamous cell Ca and some associated VIN. 

I also had an ulcer which was what caused my GP to refer me to gynae in the first place. It failed to heal which confused my GP - she was sure it was OK but the original gynae said the margins of the ulcer were raised and she was 50/50

All we can do now is be vigilant and hope I get the 5 year all clear.

So sad for your Mum but hopefully all will be well for her too

Angela xx

Thank you Angela. I am glad that your op went ok but am so sorry that lymphedema has started for you. It must be so uncomfortable.

I have heard that there is quite a high chance that this occurs with Vulval Cancer, which is so unfair. Do they suggest anything that can minimise this or reduce the effects?

Hope that it is sorted for you soon and that you get the 5 year all clear.

Best wishes