I had been going to the Doctors for many years with a "cyst" on the left outer labia. It was like a yoyo up and down and forever going up to the size of an egg, each time I did my John Wayne walk and just got on with it.
I was aware of this cyst and always kept a very close eye on it, and being ignorant to vulval cancer never thought past it being a "cyst".
In January 2001 I had done a check and noticed the cyst had company, must have been getting lonely I suppose, I had detected a second lump in with the original lump, so back to the GP I went.
This time I saw a lady Doctor, I told her about this and said I would it removed this time as I could not even begin to imagine how painful this would be if the 2 lumps came up together. The Doctor asked to have a look at the cyst and agreed saying it looked very painful and ulcerated and gave me a course of antibiotics but also said this should have been removed many years ago. Little did she realise in doing this she actually played a big part in saving my life, as I was later to discover. I was referred to the local hospital to see the gynaecologist.
I waited and received an appointment for mid February which was pretty good for our local hospital. I attended and was told "ok" and that it was only a cyst!!! I reminded the Consultant I had been referred to see him with a view to the cyst being removed, he reluctantly agreed and put me on the waiting list. He went on to say I was wasting valuable time by insisting I had this cyst removed, I would be taking up a bed, so I asked for it to be removed under a local as I was terrified of having a general. I often wondered if this Doctor ever found out what my cyst really was.
Time passed and we were due to go away so I called the secretary up and asked if she had any idea as to how long I would have to wait to have this removed. I was told it would probable be in May, I questioned the long wait and was told "You do have to wait longer for a Lady Doctor to remove the cyst". I told her I was not at all bothered about a male removing this cyst and was happy so long as it was removed. I was then informed it could be done the following Friday.
I jumped at this opportunity and was booked in for 11-30 am. My Sister, Sue took me as I had been told in the letter not to drive. I was called in and sat down in this kind of half chair, I even watched on the monitor at the side of me, and asked could I have a look at the cyst after it had been removed.
I felt nothing only the initial injection an OUCH and watery eyes for a few seconds, but after that it was just fine, when it had been removed the Doctor had hold of it in a pair of tweezers and he brought it closer for me to see, it just looked like a white piece of wax!!! He then passed it to the nurse who was assisting him and she said to him, "Shall I dispose of this now!!! No!!! "It has to be sent to the lab". I cringe when I think what would have happened to me if she had disposed of the cyst!!!
He reassured me it was nothing to worry about as he was convinced this was just a cyst. I was told I had dissolving stitches and they would take about 7 days to dissolve then I would be ok, and there would be no need for a follow up appointment at the clinic unless I had any problems, which the Doctor said he was not anticipating. I left happily with my Sister thinking at the time I was finally rid of the cyst.
My other Sister, who is a nurse came and removed my stitches after about 8 days as I still had them all left in and they were beginning to really irritate me After that all was ok well for about 6 days I was getting used to life without the cyst, but I had noticed I had this itch in this very same area which was driving me crazy, so I did what all ladies do when they get that itch, and I bought some canesten cream thinking what a wonderful cream this was, well for a few hours then the itch came back again so I was going through a tube every couple of days I really thought this was due to the healing process, how could I have been so ignorant!!!
6 days after the stitches came out, Friday 6th April at aopprox 8-30am the phone rang, I was greeted by the Doctors secretary telling me I had been made an appointment for Monday 9th April at 9-00am at the gynae clinic? I told her she had called the wrong number as I had no appointment and was not even under the clinic.
This went on for about 20 minutes then all of a sudden it hit me, It had to be the cyst, I told her what I was thinking, she denied anything was wrong and told me it was a routine check up, and I had to be there for 9-00am on the Monday. All of a sudden I said to her, "its bad news isn't it" I had no idea why it could be bad news this was only a cyst but I somehow knew and I repeated this back to her, again she denied this and again told me to be there on the Monday.
That was when I decided I was not prepared to wait until the Monday, and I then told her I would be there in 40 minutes, she told me I could not do that as the Doctor was busy, I told her I was not bothered about that, busy or not I would be there and I expected the Doctor to be there to explain what was wrong with me. I told her I wanted answers today and I was not prepared to be left in a state of wonder all the weekend, and I then put the phone down on her.
I sat on the bed and was shaking, badly too. I could not move I knew I was in trouble, cancer did cross my mind but not "there" No!!! You don't get cancer on your vulva, how wrong could I have been and what a shock I was very soon to get. I pulled myself together and then called Alan up and told him to come home, he asked me what was wrong and I just said, I think I may be in trouble here. He said why what have you done, joking as we always did, so yelled at him and told him he had 15 minutes to get home, explained what had happened in 30 seconds flat and told him if he was not home in 15 minutes I would just go without him, he was home in less than 10 minutes.
We arrived at the clinic and were told to sit in the waiting room which was heaving with so many patients, we sat and I looked at everyone wondering why they were there, were they there for bad news like I was, ladies went in and came out and then I jumped up and went to reception and asked how much longer I would have to wait as my stress levels had now shot through the ceiling and I was very agitated and poor Alan was copping for the lot.
I then saw the nurse who had assisted the gynae when I had the cyst removed, the one who wanted to dispose of the cyst, (remember then one I told you about earlier), and the receptionist said something to her and she looked over at me and her expression confirmed I was in trouble, big trouble and she called me over to her. I pulled on Alan to come with me and she said I would only have to wait another couple of minutes as they had been waiting for my notes to come down, and they had just arrived.
The Doctor was just finishing off with the lady he had in then I would be called in. The nurse managed a little smile but I could see it in her eyes, she knew something about me that I was not going to like. Strange really as stressed as we are we pick up on expressions so easily don't we???
I was called in a few minutes later. As I walked in the room with Alan right behind me, I saw the Doctor looking through my notes, and then he turned to me and I held out my hand to shake his, and without further warning he just said, "I am sorry you have, vulval cancer!!! The cyst was malignant!!! I was stunned and asked him to repeat what he had just said to me, he said the same and I was still stood there holding out my hand to shake his. Alan and I were stood up when this devastating news was broken, and the door was wide open. The Doctor closed it behind us when we left.
My initial reaction was to slap his face, as I felt we deserved to have been told with some compassion and diplomacy. Alan and I had just been told something none of us ever want to hear, and we had not even been given the chance to sit down!!! I nearly fell down. I was shocked, stunned, terrified and by the look on Alan's face he was in pretty much the same state, he had tears in his eyes and I know I had hate in mine for the way this Doctor had just given me this bad news.
He asked me if I had healed up ok and I mumbled I was fine. He then told me to go to the examination room and he checked both my groins, I had no idea why he was doing this, no explanation at all, and then he told me not to worry!!! As there did not appear to be no swelling in my groins so I would probable only need to have the nodes removed on the left and just some more of the skin around the area where the cyst had been. I had no idea what he was talking about when he was talking about the nodes!!!
He then told me to come back to the other room and he walked out and left me. He then said he would write a letter to a Gynae Oncologist at a certain hospital and I would hear very shortly. He then beckoned us to leave the room by walking to the open door. We both just looked at each other and we left, after which he closed the door!!!
I had just been diagnosed with cancer and we came away with nothing! We went home both of us in shock! No support, no information, no phone number, nothing we were literally just dumped as I choose to say.
I told Alan I was not going to tell no one about this until I had been to see the specialist but he called one of my Sister's and she then intervened and called the Doctors secretary and asked where I had been referred to so she could find out how long I would have to wait. She called the Secretary of the Doctor I was waiting to see, to be told, Oh sorry, I don’t know he is away and I do not know when he will be back, but I think we may be looking at about 7 weeks!!!!
My Sister, Sue then called the first Doctors secretary back and told her what she had just been told and the secretary said she would call another hospital and get back to my Sister who had by this time told her she would pay for me to go private if I could be seen quicker. This secretary whom I have to say was wonderful and very helpful to my Sister, said she had spoken to another Gynae Oncologist's secretary and she said he was prepared to see me 6 days later on the 12th April at 2-00pm.
The following week was a blur to me and I stayed in my bedroom most of the time, crying, planning my funeral and we told Carl 27 and Lisa 24 our 2 children I had a back problem as I would not tell them until I had seem the Consultant the following week as I just did not know how to tell them what as going on and I wanted to give them all the facts when I knew them, thinking how long have I got to live!
The 12th came around and I woke that day feeling very sick, and could not stop shaking. My other Sister who is nurse had suggested she come with us and she would drive as also thought It was a good idea for us to take someone else with us so if we did not take everything in there would be someone else there who would remember for us. She arrived about 12-30 and she walked in and said I looked awful which I agreed with, we all managed to smile at this comment. We left for the hospital about 1-00pm as we wanted to make sure we arrived in time to park and find the clinic.
I will never forget that drive, all I kept seeing was the signs to the hospital we were on our way to, and we then had to pass a cemetery on the way so this made me feel very sick and dreaded the appointment even more.
We arrived and managed to find the clinic easily enough. I checked in and we all sat down and sat staring at the wall, not knowing what to say, It was exactly 2-00pm when my name was called. We all 3 looked at each other and then we got up and followed the nurse to the examination room.
I was dreading the Consultant coming in, after what had happened the last time and within minutes he entered the room with a smile on his face, looked at my sister and me and asked which one of us was Carol, I nodded and he came over and shook my hand and introduced himself to me, then I introduced him to Alan and my Sister and then he sat down with us all. He asked me what, did I know. I told him what I had been told the previous week and then he examined me. He left the room to wash his hands and came back a few minutes later and confirmed it, I had got vulval cancer, he went on to tell me what surgery I would need to have.
This did come as another shock to me as I had been told completely different to what I was now being told, a radical vulvectomy? I did not know what this really meant and he then explained it all to me. I will have to remove your inner and outer labia and also your clitoris, along with the lymph nodes from both groins??? Not exactly what I had been told the week before and I then began to think this Doctor was crazy as for some reason I just thought he could not remove my clitoris.
I kept thinking what does he mean my clitoris? I then asked what I would look like and he said he would go and draw me a picture of what he was going to do, he came back in about 5 minutes later and produced a picture, not exactly a masterpiece, and I remember saying to him “I hope you are a better surgeon than you are an artist” we all smiled and he then asked me if I had any questions I needed to ask. I didn’t have any as I could not think of any at that moment. I remember my Sister asking a couple of questions but I cannot remember what they were.
Then one did come to my mind, what could I expect my life span to be if I had this surgery? and to my amazement he said my prognosis looked good, and if my nodes were negative no further treatment would be necessary. This Consultant gave me some hope, something positive to go back and tell Carl, Lisa my Mum and the rest of my family and at this point in time I was felt much more positive than I had been since I had seen the other Doctor. I had just been treated along with Alan and my Sister with compassion from a Consultant who cared, and for this we were all very grateful as I had just been given the strength to get me through the next 12 days.
My surgery was scheduled for the 24th April and went ahead as planned. Thankfully all my nodes came back clear so basically all the cancer had gone. How could I have ever thought this was all over now!!!
Once the cancer has been removed, this is not the end, it is just the beginning!!! Please go to link where it says Sex after vulval cancer and you will see exactly what I mean.
The rest!!! the rest is History, well for now anyway, cause then the nightmare had really only just began.....As for the other Doctor I was referred to see, the one whose secretary said she did not know where he was?
This is a part of my journey I have only shared with my family and a few very close friends, maybe one day in the future I will, but for now all I will say is this…. I was treated horrendously by this Doctor who was apparently a supposedly specialist in cancer? so much so I was very close to ending it all when I received the most distressing letter from this Doctor in the post 4 weeks after my surgery on a Saturday morning when you cannot get hold of no one, and I don't think you would believe this if I told you anyway...
As my very Dear friend Carol from Texas usual says...later ladies...
Please remember, there are very few of these Doctors in the UK, most are very caring and compassionate, I know as thankfully I was eventually was referred to one of the best!
Thankfully I ended up with a wonderful Consultant who always treated me with the greatest respect and always has the time to answer any question I asked him, and I was always given an honest answer. I am alive today because of this Consultant, and my family and my friends along with myself will be eternally thankful for this and we all have the greatest respect for him.
Carol
9 years cancer free and counting!!!
http://www.canceractive.com/page.php?n=1039
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