Getting diagnosed vaginal cancer

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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

SarahH21 over 1 year ago in reply to HopeC

Hi Hope

I thought too that I was an empathetic friend when a friend was diagnosed with cancer some years ago-I realise now that I only trotted out the platitudes I now can’t stand hearing said to me! It’s very true that before we have a cancer diagnosis we have no idea what is helpful to say, but we are trying our best.

I’ve had a lovely weekend without a single leak-we had visitors, and it was lovely to catch up and laugh. I’m normally on my own all day and I never see anyone, plus I can’t leave the house on my own, so it’s a pretty lonely life. Seeing friendly faces was such a tonic, although by yesterday afternoon I was exhausted and had to go for a nap. But it was so good to see them, it gave me a real boost. As did the no leaking! What a difference it makes.

Even a little trip out for you is a boost, and a change of scene is so helpful to brighten us up. I’m up early this morning and hoping for a good week-thinking positively to start my day! Take care.

Sarah xx

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Bee1968 over 1 year ago

I can understand where you are coming from. I did the same treatment as you as they would not operate and was hold everything was great for the last four years last week had an MRI. Which showed a new nodule above the bladder dome. The report also stated “raises the possibility of peritoneal disease” And I should now get a CT. With it saying that it looks like they just need confirmation which means I have about 4 to 6 months. Nothing can be done. For the last nine months I have been complaining about pain and they keep saying radiation damage. But they would not listen. When to GP and he arrange scan got results Friday now trying for CT. You need to keep pushing anyone that is reading this. Believe your gut. And fight for what you need

i did suffer incontinence after the internal radiation but meet a lovely ladder consultant and he arrange injections into the bladder that last about six months but they did help. Hope you are doing ok at this time. It’s hard

HopeC over 1 year ago in reply to Bee1968

Hi Bee1968

Sorry to hear your news. Yes, I agree that we should trust in our own instinct and push for what we need. Since my first misdiagnosis I now have no reservations about questioning any of the so called experts that cross my path. I read as much as I can to understand my disease and put forward ideas regarding my treatment options. Initially I was in awe of the professionals I've met along the way but have since learnt they can be fallible human beings like the rest of us mere mortals.

Have you asked about clinical trials? I have recently had to come off of one due to my infection issues caused by bladder and bowel fistulas. There are no specific trials for vaginal cancer as it's a rare one but I was put on a trial for a similar squamous cell cancer. Unfortunately, I was already going downhill health-wise before I started so the timing was not good. If you are feeling okay at present it may be an option to explore.

I am currently waiting on scans to see if palliative surgery for possible stoma/nephrostomies can be done as I have double incontinence issues with my two fistulas. At the moment I have no quality to my life and if this can't be improved then I'm mentally and physically done with this battle.

I'm so sorry you've had four years of this. Yes, it's a roller coaster of emotions which are really hard to deal with. It must be especially difficult when you've had good results which give you hope only to be dashed again. It's been a bit different for me. My prognosis was always grim and in the past 18 months each assessment has gone from bad to worse so there's been no illusions that I can beat this. I don't focus on the amount of time I may or may not have. I take each day as it comes and try to find moments of joy where I can, be that watching sparrows squabbling in the garden or hugging my little grandchildren.

I hope it helps to know that others in the same boat understand what you are going through and send our love to you through this forum.

Love HopeC