Hi I am new here

Hi, I 

I am 69 years old and have just been diagnosed with vaginal cancer , squamous cell G2, T1/2?  . 6 years ago I had bladder cancer, G3, T2, and was treated with radiotherapy and chemotherapy. As I have other chronic conditions, including interstitial lung disease, they though I would not be fit enough for a bladder removal operation. The radiotherapy worked, I have been clear of bladder cancer for 6 years, but the radiotherapy has also caused this second cancer.

Because of where it is( on the right wall of my vagina) the consultant cannot just remove it and leave healthy margins, and I cannot have any more external beam radiotherapy as I have had the maximum dose, and he said that the best option would be to remove all the organs in the pelvis. However, he thinks I will not be fit enough for this, so is sending me for a fitness assessment with anaesthetist on Monday. If I am deemed not fit they may be able to refer me to a specialist cancer centre for alternative treatment ( some form of brachytherapy I think) Mount Vernon centre was mentioned as a possibility.

Does anybody have experience of 

specialist centres?
brachytherapy? what type? Cyber knife?
any other possible treatments?

  • Hi  and a very warm welcome to the online community

    It sounds like you have had an awful lot to deal with recently and I hope the fitness assessment goes well tomorrow.

    Having had a completely different type of cancer to what you are being treated for now, I can't help with your questions but noticed that your post hadn't had any replies yet. Replying to you will 'bump' your post back to the top of the discussion list where it'll be more easily seen.

    If you haven't tried this already you could put key words, eg brachytherapy, cyber knife, into the search bar at the top of the page to find previous posts on these topics. You could have a look through some of them and reply to any of the more recent posters if you think that they might be able to help you further.

    You could also post your questions in the ask a nurse section of the online community and one of the specialist nurses will reply within 3 working days. Clicking on the link I've created will take you straight there if this is something that you'd like to do.

    While you're waiting for replies it would be great if you could pop something about your journey so far into your profile as it really helps others when answering or looking for someone with a similar diagnosis. 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.

    x

    What is a Community Champion?

     "Never regret a day in your life, good days give you happiness, bad days give you experience"
  • Thank you for replying latchbrook

  • Hi Redtree,

    I have a little similar situation with you. I am 47 and I had vaginal cancer in 2014, done with chemo, radiation and branch therapy and all clear( I still have high grade dysplasia in my opening of vagina though)  And I am diagnosed with urethra cancer yesterday. It seems like I will need to get removed my bladder, urethra and vagina. It is going to be a major surgery.

    I am not sure if branch therapy itself would work, I had all three treatment without any interval. what my doctor said is just having surgery to remove your organ. I suggest that you talk to your doctor for these questions. I live in the US. 

    Best wishes,

    Kuma

  • Hi Kuma,

    Thank you for replying. I am very sorry that you now have another cancer to deal with, cancer of the urethra. As you say, it will be major surgery for you. No doubt you are very nervous. I hope it all goes well.

    My consultant did say that major surgery would be the best option for my cancer, but , after meeting with the anaesthetist on Monday, I was deemed not fit enough for such surgery(particularly as I have scarring of the lung). So I am now waiting for an oncologist appointment to discuss the next steps, which, I think, are likely to be brachytherapy. A very anxious time! 

    Thanks again. Best wishes

  • Hi Redtree

    Really sorry to hear that you are going through this again..

    I had squamous cell too, 2b with lymph node involvement...25 rounds of radiotherapy and 4 high doses of brachy.....I was 48 at the time..

    Most common side effects from Brachy are soreness/cystitis...some women breeze through it, I didn't, but i'd had 25 rounds of radiotherapy before hand..

    My cancer was quite low down in the vagina, also on the righthand side, 2cm by 4cm, still had 2cm left before the brachy, so it was effective.

    I do hope that you are well enough to have brachy 

    Hugs - Shelley

  • Hi Shelley,

    Many thanks for taking the time and trouble to reply to me. Coincidentally I am waiting for a phone call today from oncologist to discuss brachytherapy.

    How long ago was it that you had brachytherapy? And at which centre? Did your side effects last for a long time?

    Will need to make a decision this week between brachytherapy and electron therapy. Let’s hope I make the right one!

    Thanks again

    Redtree

  • Hi Redtree,

    I had my Brachy in January 2019, it was at the Christie in Manchester...my side effects lasted a few weeks, I was able to start using my dilators about 6 weeks after, so probably mid Feb when things had really settled, but they were still tender and bladder was slightly irritated until about the April.

    After treatment has ended, my advice would be get some hydromol, warm it up in your fingers before you apply it, it makes it easier to adhere to the skin and will create a barrier so it doesn't sting as much when you have a wee, i did get cystitis too, this lasted about a week or so, I think it was a lot worse because i'd had 25 rounds of radiotherapy and the chemo before the Brachy (had one weeks break between treatment)..I also used a mixture of zervoreen and instilagel - i put this in little pots of it in the fridge to cool, so i could pop it on, it cools and slightly numbs..My bowels were off too, but again, they'd been like that since week 3 of my radiotherapy, so the Brachy just added insult to injury!

    They had to put me out for the first session, its when they fit the device, the other 3 I was awake, you are in a room on your own whilst you have your treatment, i just read the news on my phone to keep myself distracted, it took about 30 minutes...but they can do it in 2 sessions but you are for about 12 hours at a lower dose, i suffer with anxiety (it was through the roof when I was going through my treatment), i think that's why they opted for the shorter sessions with a higher dose.

    Not an easy choice really, but i'd ask which has the highest success rate.

    Huggs - Shelley x

  • Hi Shelley 

    Thank you so much for your detailed answer. It will help me to think of the right questions to ask when I have the phone call.

    Best wishes and thanks again

    Redtree

  • Your welcome, keep us updated..hope all goes well 

  • Hi Shelley, 

    just to update you after your helpful responses to me. I had interstitial brachytherapy last week at Mount Vernon ( 6 doses of high dose.) Very good doctor( Professor Hoskin) and lovely brachytherapy team.

    Have been at home since the weekend and am not too bad at the moment. Swelling and stinging of the vulval area( made worse by stress incontinence and a UtI) but so far controllable most of the time by paracetamol / ibuprofen. Thanks for your handy tips, by the way.  Bowels ok . I am, however, expecting it to get worse as the doctor said to expect “prolonged and painful healing “.

    What was the procedure re check ups and after care for you? I don’t really know what to expect.

    Thanks again for your support

    Redtree