Hi Everyone,
Just thought I would share some tips with you on getting diagnosed. I under went a hysterectomy 25 years ago for repeated abnormal smears. CIN 3. I had no further problems until 18 months ago when I experienced an episode of vaginal bleeding. I contacted my GP straight away and was referred to the hospital for a fast track appointment. The gynaecologist only did a cursory exam with a small speculum and declared it was vaginal atrophy due to my age. I didn't know at this stage that my GP had felt a small mass in the vagina when she had carried out an internal. Obviously, not wishing to alarm me she told me the skin was a bit rough. My GP sent a request for a second urgent referral 12 weeks later when the bleeding had worsened. I was put on a general waiting list and did not receive an appointment until 4 months later. It was clear when I arrived for my appointment the gynaecologist had not even familiarised herself with my GPs second letter. I insisted on a thorough examination only to find a large mass at the top of of my vagina. An urgent MRI and biopsy shoed it to be stage 4 vaginal cancer with pelvic lymph node involvement. I've since undergone several rounds of various chemo radiotherapy and brachytherapy, all to no avail. I am now incurable so my message to anyone who attends post menopausal bleeding clinics is Insist on having all the diagnostic tests done. I had a gut instinct that all was not well but let myself believe the gynaecologist knew better than me. As vaginal cancer is so rare it's not the first diagnosis that springs to mind despite my previous history of abnormal cells I was fobbed off. Please don't let this happen to you
Hi HopeC and welcome to the group.
It’s really hard to know what to say, but thank you so much for sharing your story. I was more fortunate in my referral for post menopausal bleeding in that I was taken seriously immediately, as I had a visible tumour on my cervix growing into the vaginal wall, and it’s difficult to see that not happening for others. My cancer wasn’t vaginal but cervical, but I come into this group due to the surgery I had (if you hit my name you will see my bio) and the fact that I lost my vagina as part of that.
The group can be quiet because as you say it’s a rare cancer, but your story will I hope make others aware of the need to advocate for themselves when they feel something is wrong. Post menopausal bleeding always needs to be properly investigated and I’m so sorry that yours wasn’t more fully checked out.
Do you mind me asking if you are on any treatment currently? Are there any other options to keep you stable in terms of further chemo or immunotherapy? Your story and message to women here is appreciated, and please feel to come back and post if you’d like to do that.
Sarah xx
Hi HopeC
I’m glad you’ve come back on but I’m sad to read all you’ve been through. I have a number of friends who have dealt with fistulas so I have some understanding of how miserable they are to live with. Would urology consider a nephrostomy for you where the tube goes directly in through your back and connects to a bag outside? Several friends have had this done where they weren’t suitable for the exenteration surgery. Not ideal, but better than the leaking.
It’s just an impossible situation for you to deal with at the moment and I do understand what it’s like not to be able to leave the house for fear of leaking. In my case, with a urostomy, it never stops either, and I’ve had periods where my bag hasn’t been effective for whatever reason, and I’ve spent the whole time day and night in my own urine. But that was maybe for a couple of weeks at a time until I found a solution. so nothing like what you are having to go through. But it’s exhausting, depressing and utterly miserable so I empathise on that score.
I hope you can find out more before you make any decision to come off the trial, and hope there can be something positive for you.
Sarah xx
Hi HopeC
I think unless someone has suffered with incontinence in any way they have no real idea of the hugely negative impact it has on your life-it’s exhausting to deal with and you never get a break from it in the situations we have found ourselves-me because I don’t have a bladder any longer to store urine, and you because the fistula stops your bladder from storing it.
I basically couldn’t get up or get about when my bags stopped working for me and I used multiple puppy pads while lying on a waterproof mattress protector. Cheaper than Tena! I actually think it’s shocking that you’re limited in the supplies you can get to deal with this.
I also know ladies with the stents who report multiple UTIs and discomfort, though they report the stents have helped.
I tried to cope alone when I was first diagnosed, told minimal people, didn’t want to discuss it and didn’t join support groups. I thought I could manage, but it probably wasn’t the best way. I only joined the community here well after my surgery. Then I was concerned that my story might scare people who were newly diagnosed so that was another concern. I got myself into a very dark place mentally almost a year after never my surgery, never saw anyone, never went out. I got some free counselling sessions via Macmillan and they definitely helped. If you think this could be helpful for you, you can call the support number in my signature to discuss this.
You sound like you have tried to cope alone but it’s all getting too much now, and I completely get that. We cannot be strong all of the time, we cannot protect others all of the time..it’s just too hard with an advanced cancer diagnosis, it’s hard to know what to do for the best, but it helped me to talk with the counsellor, and I am less inclined these days to say “I’m fine” on days when I’m not. Hardly anyone knows about my surgery-I mean, how do I bring it up that I have 2 stomas and had everything in my pelvis removed? A real conversation stopper! But on reflection I probably wish I had talked about it as everyone now really does think I’m fine, when that’s not the reality.
Right, the nephrostomies. I asked 3 friends who have them, and the view from all of them was that it was a difficult procedure to undergo. Sleeping was tough for 2 of them, one not so much as she keeps the bag outside the bed, but showering is ok with it covered up with special dressings called Tegaderm. The tubes need changing every couple of months. My friends were in the position that these were needed to save their lives so they didn’t have a choice, but it is tough. If it could improve your quality of life though, it could be worth it.
I know we have a different cancer, and have gone down different paths, but I’m around the groups every day if you need a friend, and I’m always happy to listen and offer any support I can. This is a huge deal emotionally, and I don’t think the doctors always fully understand or appreciate that. Thank you for your kind wishes-much appreciated.
Sarah xx
Hi Hope
I found it easier to talk to a stranger than anyone close to me, which is what made the counselling useful for me but I understand it’s not everyone’s cup of tea. I’m not sure about it changing the way you feel, but just being able to unpack all the stuff in your head can be a helpful thing.
We are similar in trying to protect those around us-I did my crying alone, told my worst fears only to my little cat, and always put on a “brave face” to the outside world and family. So I had no-one to acknowledge how I was feeling, and it was an incredibly lonely path to tread. I wasn’t given great odds for my surgery, and hardly anyone knew what I was to go through. The counsellor said the words to me “you ARE brave” and I’ve never forgotten that, but because I didn’t tell people anything I think they assumed I was maybe having a hysterectomy or a breast removed.
The nephrostomies are daunting, but if they are offered would maybe give you some relief. Unless you know what it’s like to spend your time covered in urine, you can’t appreciate how hard it is to live like that. I have the double whammy of also being covered in poo on a regular basis due to having the colostomy! But my situation is not nearly as difficult as yours.
Very few people understand all of this but I can understand much of it due to my own experiences and I know it can be easier to talk about these things with a stranger on a forum. It helps me.
I’m sending you a gentle virtual hug and we can talk anytime you’d like to.
Sarah xx
Hi Hope
I’m so glad things are feeling a bit easier with the catheter removed, and hope that urology can look at other options for you. And staying on immunotherapy will hopefully also see good results.
It’s all about looking for the silver linings where we can I think. I do try really hard to do that, but sometimes, like yesterday it can be challenging! I had my urostomy bag burst twice in quick succession so up and down stairs, two sets of clothes in the wash and it was hard to find a positive, so I ended up in tears-mainly of frustration. But it didn’t leak in the night, and I have woken up in a happier frame of mind today!
The things which really annoyed me and still do, are people saying “be strong”, “be positive” and “you can do it”. Meaningless words to me from people who are trying to be helpful but it just grinds my gears! They have no idea in the world what this is all like.
I decided to join this group as I felt I could hopefully have some understanding, even though I have a different cancer, of what other ladies were going through and hopefully be able to offer some support and empathy. It is a quiet group, but you never know who might be reading and not posting, but getting some help from what they read here.
Sarah xx
