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

I know that this is a group for sufferers of Vulval Cancer but I wondered if there were also any other members who instead had family relatives who have been given this diagnosis?

My mother has suffered from Lichen Sclerosus for many years. 6 months ago she noticed that she had a ulcer, however she has only just been told that she has cancer.  She has been given the diagnosis of Vulval Cancer and is due to have a CT Scan to see whether the cancer has spread and if so, to where. An operation has also been booked, which I think is for the removal of the growth and the lymph nodes.

Looking through information on the internet (The worst thing to do, I know!) it appears that ulcers are a symptom of Stage 4 cancer. Does anyone know if this always the case or can they also be present in cancer that has not progressed as far?

Are there any support groups for families of sufferers of Vulval Cancer?

Many thanks in advance.

Cazzi
Posted by

Hi

I was diagnosed with vulvar cancer 5 years ago. Like your mum I too had suffered with lichen sclerosis for many years. I had three biopsies when the skin changed colour which were all OK. I then developed a painful lump which turned out to be cancer. Mine was stage 1B and i had an operation to remove the cancer and was lucky enough to be put on clinical trials and only had my sentinal nodes removed. This is the first place the cancer spreads to and they were clear of cancer.

You said yourself the worst thing you can do is look on the internet. This really is the best site for help and support. Vulvar cancer is a very slow growing cancer so hopefully your mums has been caught early. I recently had my five year check up and have now been discharged. Proof that it can be treated and cured.


Sending you and your mum lots of love and big hugs. Keep in touch.


Cazzi





Amberruby
Posted by

Im also a daughter whos mum had vulvar cancer she was diagnosed in November a ct scan showed it was localized however she went through an operation to remove 1 tumour and had 30 sessions of radiotheraphy which caused alot of pain she died 5 weeks ago please take my advise and get as much information as you can as we werent given the whole story as to how aggressive my mums cancer was.

If my mum had been given the correct information she wouldnt of gone through radiotheraphy and would of enjoy the time she had left.


Anya x

scared_daughter
Posted by

Dear Cazzi,

Many thanks for your reply. I am glad that you have been discharged. That must be such a relief for you and gives me some hope. I am unsure of what stage my mothers cancer is as I think they are awaiting the results of the CT scan and surgery before they clarify this. We have only been given the news this week.

I have decided now to stop looking at the internet (other than this site) for information as all it has done is worry me further and that is not helpful for anyone.

Do you mind me asking what clinical trial you did as it sounds as if it was successful. Did you have to go through Chemo or Radiography as well or was this not needed after the surgery? My mother has had friends who have gone through Chemo / Radiography for other cancers so at the moment has said she will not put herself (or us) through this. I am trying to be hopeful today and think that this would not even be needed. Currently I do not know anything about whether it has spread (hopefully it hasn't) but it is really difficult not to let your mind start thinking the worse.

scared_daughter
Posted by

Dear Anya,

Thank you for your reply.

I am so,so sorry to hear about your mum.

My mum has agreed that I can meet with her consultant following her scan so I hope to get some answers then. Hopefully they will be clear and honest about things.  I have so many questions but at the moment my brain is spinning so nothing is making sense in my head. I only found out this week and have gone from being confused to upset and angry. My mum has said she does not want to talk about it and just wants to carry on as normal, so I am glad she has agreed for me to meet with the consultant to get my questions answered.

Best wishes.x

ClareB43
Posted by

Hi,

I also have LS and had it for years not knowing.

I noticed a small tear which I ignored for about 2 years! Then it got better to the size of a 10p pence and was like a ulcer, which I still ignored for couple months!

I had biopsy and it came back as Vin 3 and cancer, after having it a while it was still only stage 1b. A slow growing cancer thankfully!!

I had tumour removed but didn't get clear margins as it grow to close to my bum.

So I had 5 weeks radiotherapy after.

Hope this helps!

Stay positive and good luck!

Clare x

scared_daughter
Posted by

Thanks Clare. I know, I do need to try and stay positive- It is so hard though! My mum is my rock and we are so close. I hate that she has to go through this.

The CT scan is scheduled for early next week so I guess we will have a better idea of what we are dealing with after that.

I am sorry to hear that you had to have radiography in addition to the operation.

I hope that you get the all clear soon.

Sending you my best wishes.

Lilla M
Posted by

Just out of interest how old is your mother?

Cazzi
Posted by

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 

Sammychick
Posted by

Hi Amberruby, it made me so sad to hear about your mum and the treatment that she went through which was really pointless.  Hopefully you had some nice times with her during those extra months and those memories will stay with you rather than the bad ones.  Sending hugs and empathy. XO

Scaredaf
Posted by

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

Anje

 Knittingnan
Posted by

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.

scared_daughter
Posted by

Lilla M

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.

scared_daughter
Posted by

Cazzi

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

scared_daughter
Posted by

Scaredaf

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