Mother has been diagnosed with Vulval Cancer

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.

Lilla M said:

Just out of interest how old is your mother?

She is 69 although I always think she seems much younger, but that might just because she is my mum.

Cazzi said:

Hi

Because my cancer was at an early stage I was put on a clinical trial for the lymph nodes. If the cancer spreads it goes to the lymph nodes first. Normally they take all the nodes out in the groin. With the trial I just had the sentinal nodes out which are the first ones that it will go to. So I just had one out of each side. If they had tested positive then I would have had the rest out but luckily they were clear. Not all hospitals do the sentinal trial but it is worth asking about. I was so lucky that I had an amazing consultant who specialised in the trials. I didn't need any chemo or radio. 

I know it is hard but please try and stay positive. Your mother is lucky to have you for support. I have two sons and it was hard explaining to them what was wrong with me but they were both amazing.

I know you have a lot of questions but you do find when you get to see the consultant your mind goes blank. Make sure you write everything down beforehand that you want to ask.

If there is anything else you need to know please ask.

big hugs to you both

Cazzi x 

That is good to know that you did not need all of your lymph nodes out nor need radiography / chemo :)

As far as I am aware I think she is due to have all of the nodes out at present, however I will certainly ask about whether the op you had is available and ask for the consultants advice on this. Do you  mind if I ask how long your recovery was for this operation? Prior to last week I had never even heard of vulval cancer so I feel quite clueless!

Hope that you have a lovely Easter weekend x

Unknown said:

Hi there, As mentioned above please start writing down now any questions you have as I was absolutely floored after referral from my GP to be suddenly told I had cancer. I did not know what to ask when Oncologist wanted me in for op the following week.

Another thing to be aware of, everybody is very different. After my op I have been told that this will recur as VIN incompletely excised, so just a case of when. Recurrence can also be very rapid so please think about what you need to ask before you go in with your Mum so you have the full picture and good luck for the best outcome possible. Anje xx

I am so sorry to hear that your VIN will reoccur Anje. I cannot imagine how that is to deal with for you. Sending you massive hugs.  I hope that they can do something to ensure that finally any risk of reoccurrence can be removed for you. x

Unknown said:

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.

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

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

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

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

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