Hi guys , I'm looking for advice i am new to all this and I have been struggling with a decision that I have got to make .....
If I say no am I being selfish and if I say yes just how bad can it get and just how much more can I take before I lose myself completely
So I was diagnosed with stage 2 vulvar cancer in 2018 I was told they was going to cut the tumour out on the vulvar only to wake up and finding out it was bigger then they thought it was and they actually done a radical partial perineum removal this was done November 2018 I then had to have brackythrapy in February 2019 for 7 days which was very painful , since then I have had operation after operation June 2019 was first attempt of hysterectomy and oophorcetomy it's a long story why they couldn't do it so they done a re do operation in June 2020 cut me from belly button right down to top off vagina had loads off problem healing and then from 2020 to 2024 I have had reoccurring high grade vin and operation where they keep cutting away at my vagina my last operation was literally 2 months ago and again this last op they cut out alot more then I was expecting them too and I have recently gone to the hospital for a check up and I was told that most off it has healed but 1 bit and unfortunately it looks like it is vin and he wants to operate again and cut that small bit away some more , now I told him two months ago that was going to be the last time he cuts away at my lady area so of course when he said let do another operation I have said no (if i say yes then this will be my 9th operation/procedure in the last 6 years ) and his reply is if I don't have it then it's about waiting for it to change before coming up with a treatment plan for me , now I do have to mention in all this madness I have also developed ttp along the way actually I nearly died from it just under two years ago and now I am also being checked for ms and I do have crohns disease so I can be very temperamental
my doctor has given me 3 months to to make a decision to weather to have another operation or to leave it and watch it closely until it changes and then treat it
All advice welcome is there anybody else going through anything like this I will be 42 this year and my life has changed so much already don't know if I can bear anymore off my body being cut away
Hi Gypsy123 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 not a member of this forum, so don't have any relevant experiences to share, but I 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. I'm sure some forum members will be along soon to share their experiences with you.
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.
"Never regret a day in your life, good days give you happiness, bad days give you experience"
Glad to help 
You can share as much or as little as you like but, as it's all anonymous on here, it does give you the chance to speak to other women frankly which you might not be comfortable with in 'real life'.
I hope you get some responses soon.
x
"Never regret a day in your life, good days give you happiness, bad days give you experience"
Hi Gypsy123
I hope you don’t mind me replying to your post as I didn’t have vulva cancer, but I have had recurrent cervical cancer with chemoradiation and massive surgery so I might have some idea of what this must be like for you.
When I read your profile, I was shocked at saddened to read you’ve been through already, and I can understand why you might want not any more operations.
I presume you have VIN because of hpv? I see you have had CIN2 and 3 before and had treatments so you have already had a lot to deal with. The problem with hpv is that there is no “cure” for it, and treatment only deals with the issues it can cause us (my cervical cancer was caused by hpv). This means that it can come back and cause cell changes like CIN or VIN. There isn’t really anything that can stop that from potentially happening-our immune system should normally clear an hpv infection, but sometimes it can persist and continue to cause problems. While CIN and VIN are precancerous conditions, there is always the possibility that cancer could develop if it is left untreated.
I think in your position I want want to ask more about the implications of not having the surgery, and simply waiting and being checked. For example, what treatment would be proposed if the VIN developed into cancer? As you have had surgery before but didn’t have radiation or chemo for your stage 2 cancer, would that be an option this time?
I think only you will know the answer to whether or not you want another surgery or are comfortable to wait, but you would need to weigh up the consequences of waiting perhaps allowing the VIN to develop further. This might make treatment harder for you. Ultimately you do not have to accept any treatment proposed-whatever it might be. This is your body and your choice.
My life too was completely changed by my surgery-I lost my bladder and rectum, along with my vagina. My experience in terms of care was generally very good, but I was discharged from hospital with no after care in place, and no help. There was no help for me at all in terms of the psychological effects of losing all the organs in my pelvis and no understanding for example of what it would mean to have my vagina removed. No-one in my team even mentioned it. So I can empathise with some of how you are feeling.
I hope you can reach a decision you are comfortable with, but understand this is really hard for you.
Sarah xx
Hi Gypsy123
It’s horrible having to make a decision like this when neither sounds appealing. For my cancer the choice was surgery or palliative chemotherapy too, although I never actually discussed the chemo with my consultant surgeon as I did want surgery. However, my situation was different and the surgery was a one of thing-there would be no further surgery for me if it came back.
You mentioned the possibly ultimately of a stoma-I have 2 stomas, but it was price I was willing to pay. Once I recovered from my surgery I was pain free and have continued like that for more than 4 years. I can’t imagine how difficult it must be for you to be facing further surgery while still living with constant pain. Do you get help with managing that?
You still have some time to make your decision but I don’t envy how difficult a decision it will be for you. I hope to hear how you get on, and wish you well in making a decision you feel is right for you.
Sarah xx
