I was 52 when I noticed that I had a small lump on my vulva and it was quite a while before I did anything about it. To begin with it just stayed as it was, like a small hard pea like lump just below the surface but it didn't hurt and I only only knew it was there if I felt around for it. I thought that it was almost certainly a cyst and ignored it. Over the next few months it grew bit by bit until finally it was about 3cm in diameter and it became quite sore. A few days later it burst and released some horrible red flesh like stuff that looked like nothing I had ever seen before. It healed up and I thought that was the end of it but I could still feel a small lump, about the size of a grain of rice.
Over the next few months it got bigger again. I had a smear test booked at the GP and I mentioned to the nurse that I had a 'cyst' and her response was 'yes I can see'. She didn't seem at all bothered about it so I decided that there was nothing wrong and everything was fine. Once again it grew to the same size, ruptured the same as before and oozed the same horrible fleshy stuff that it had the first time. It wasn't what I felt a cyst should be like but again I did nothing about it as I didn't really want a GP poking about 'down there' and if the nurse wasn't worried why should I be.
The third time that it got big again I decided that I needed to get rid of it. More because I didn't like the thought of having this nasty thing down there growing, bursting and coming back constantly. It was about 18 months since I first noticed it by then. I still didn't think it was anything to be concerned about. I had used Google to look at vulval cancer and mine wasn't like any of the things they said so I was sure it wasn't cancer or anything nasty. I made an appointment with the GP and she took alook at it, decided that it was an infected cyst and gave me antibiotics. I was to go back in 3 weeks if it didn't clear up. It didn't so I went back to the GP and she referred me to a gyn to have it removed.
I saw the gyn and he scheduled an op to have it removed. He thought it was a cyst too at that point but it felt odd, with the 'cyst' being in 2 separate capsules but joined together. He said that the tissue would be biopsied as a matter of course. I didn't hear anything more from him for about 4 weeks although I had an appointment to see him about 6 weeks after the op just as a post op check. He rang me while I was at work, in the office, asked if I was sitting down and told me that it was cancer. I was very shocked because I had no idea that there was any chance of this being cancer. He told me that it was a very rare type of cancer and they had only been able to find 2 other cases so there was hardly any literature on it. The pathology had taken so long as they weren't sure what they were dealing with initially so they had to run many tests to ensure that the diagnosis was correct. He sent me for CT and MRI scans of the chest, abdomen and pelvis as they needed to see if it had spread anywhere. Luckily for me there was no evidence of that. My original gyn said that he 'didn't do cancer' so I was referred to a new gyn. I much preferred the new one anyway. It was decided that I should have another op to remove more of the tissue where the cancer had been to ensure that they got clear margins. I had the second surgery called a wide local incision and waited for the results of the new pathology.
The pathology results showed that there was no evidence of the cancer having spread and my gyn was reluctant to do any lymph node surgery as there was no evidence to suggest that it was beneficial for this type of cancer and he felt that the risk of lymphodema was quite high. I had 3 monthly checks to start with and after the first year have now moved onto 6 monthly checks. Apart from having less vulva tissue on the right hand side, and if you look closely you can see a long line where the stitches were. there is no real evidence of having had an issue. I know that I'm lucky that I haven't had to have extensive surgery like some of the girls with vulval cancer have had, and nor have I needed radiotherapy or chemo. As the cancer is rare they are unable to tell what might happen in the future but for the time being I work on the basis that it's gone for good.
My advice to anyone with a lump in the vulva is to get it checked out. It might be a simple cyst like I thought mine was but getting it checked will give you peace of mind, and if it is something more serious then you will get the right treatment so there is nothing to lose. I was embarrassed about going and thinking that I was causing a fuss, and I could well have left it longer that would have been a silly thing to do.
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