Large tumour, optimistic outlook! Radical treatment plan?

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I have a large stage 2 vaginal tumour 6x4cm, localised with no spread. It’s on the posterior vaginal wall and is very painful. Weeks ago I had myself dead and buried looking on Google!

Diagnosed 11th Jan and got my treatment plan now, to start week commencing 19th Feb.

Doctor said they’re doing ‘radical chemoradiotherapy’, over 7 weeks. Radiotherapy every day except weekends and on one of those days I’ll also have chemo Cistplatin via IV. 

Anyone know why this is radical? I can only assume that normally these treatments are given separately over a longer period of time?

Doctor said chances of success are 70-80% which I think is great. Still worried they may insist on brachytherapy after this treatment. I’m reading some awful things about it damaging bowels and bladder etc. Does anyone know how long radiotherapy sessions usually are? Chemo session is up to 2hrs apparently. If the sessions are lengthy I may have difficulty getting people to take me every single day for that long. Do they ask you to undress/wear a gown? Does it hurt?? 

Im pleased the treatment is getting started at last but also dreading how I’m going to feel and wondering how much support I’ll need…

  • Hi again  

    I hope you’re not looking at Google any more now you have your plan! 

    Your treatment plan is exactly the same as mine, with the same chemo. This is a standard first line of treatment for this type of cancer where surgery is not an option. It was called radical chemoradiation for me but I never thought to ask why! I assumed because it was intense and over a short period of time. If you do need to have brachytherapy, try not to focus on the horror stories out there. I couldn’t have it because I had a pulmonary embolism but I desperately wanted it as the final blast to my cancer. I did wonder if not having it was the reason my cancer recurred within 9 months of treatment ending but I’ll never know.

    There are lots of positive posts in the cervical cancer group from ladies who have gone through brachytherapy which you may want to take a look at, where they have had very successful outcomes. It’s not a given that you would have any bladder or bowel damage by any means, so try not to think about that part of treatment until you know if you will be having it.

    My chemo sessions were much longer than 2 hours with Cisplatin-more like 5-6 hours, and radiotherapy in addition on that day so it made it very long. The Cisplatin itself was probably 2 hours of that process, but you are also given other bags of fluid through the IV which made it longer for me. On those days, I was at hospital typically all day. 

    Radiotherapy itself is pretty short-maybe 10 minutes, but the time in the unit can be much longer. I need to have a full bladder, so there was a drinking protocol to follow when I arrived, and there were often delays with the sheer volume of people being treated and things running behind if machines were down for maintenance etc. Also, on the occasions when there were delays and I couldn’t hold my bladder and had to go and wee, I had to start drinking water again. 

    You do not undress for radiotherapy or wear a gown. I wore leggings, so they were rolled down slightly, so the machine could target the correct area. You will have a planning CT scan in advance of treatment to pinpoint the target areas, which will be marked with tiny tattoos. This is so the staff can line you up correctly on the table.

    Radiotherapy is completely painless as the machine moves round your body, but can have side effects which you will be told about before you sign your consent form. There are many possible side effects, but you won’t necessarily have any of them, never mind all of them!

    Side effects tend to be cumulative as treatment progresses and my main one was tiredness. From week 3, I suffered from diarrhoea and radiation cystitis but was given things to help with this and these side effects were gone a couple of weeks after the end of treatment. The main thing you need to do is make your team/doctor aware if you suffer from any of the side effects you will be told about so that they can help. 

    I had no side effects from Cisplatin-no hair loss or thinning and no nausea or sickness-though I was unlucky enough to have it cause the pulmonary embolism. I’ve not heard of anyone else having this so it’s not common. You will be given anti sickness meds to take to combat any nausea. 

    I hope that’s enough information to be going on with but if you think of any more questions, please ask away. It’s an intense course of treatment but as you’ve been advised does have a very good success rate. I hope it all goes smoothly for you and you find your pain reduces-it definitely did for me.

    Sarah xx

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  • Thanks Sarah. I’ve had the planning scan and got the tattoo’s. I’ll check out the brachytherapy posts in the cervical cancer forum.  
    oh dear, the sessions sound longer than the doctor made out.. might have to see whether hospital transport can be provided.

  • I was lucky to have a lift to every appointment as I don’t drive. My hospital ran a transport service but it didn’t extend as far as where we live so couldn’t have been an option for me, but definitely check as there are a number of organisations which do volunteer transport for hospital appointments. I’m presuming you don’t drive? 

    Also you could check directly with the chemo unit on how long your sessions will be. We had a 1.5 hour drive to hospital, so it was a really long day.

    I tried to go in a bit earlier than my appointment as setting up the chemo can take a bit of time-I was lucky to be taken a bit earlier each time I went but I would be on my drip from about 10am till after 3pm. Then I’d go to the radiotherapy department by which time it would be quite late afternoon. 

    Sarah xx

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    Cervical Cancer Forum

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • I do drive but due to being shielded at home in the pandemic and then retiring early I have become an anxious driver and the hospital site a 40 minute drive and is city centre which I just wouldn’t feel able to do. On top of that I’m on large amounts of morphine, Oramorph and other drugs for pain, often very spaced out so can’t drive. Maybe as treatment progresses, my pain may reduce enough to come off the morphine!

  • Ah, I completely understand. Even if I were a driver I wouldn’t have wanted to do the daily drive to Sheffield for my treatment. I really hope the treatment helps with your awful pain-I remember how glad I felt that mine got so much better as radiotherapy went on. 

    Sarah xx

    Community Champion Badge

    Cervical Cancer Forum

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Hi AEW66

    I had a 2x4cm tumor lower vagina..I had 5 weeks of treatment and 4 high dose brachy - no bowl damage, but slight urine incontinence, nothing a light pad can't doesn't affect my life in any way...Ive got friends who gave birth 20 years ago whose bladders are worse Slight smile

  • Hi AEW66,

    How is the treatment going?

    Shelley x

  • Hi, only just seen both of your messages. I’ve now got 1 chemo and 6 radio sessions left. Getting MRI results Monday, which will tell the team whether or not they can do the brachytherapy as well, though they think it’s unlikely. In the event that they can’t, I’ll have another 10 radiotherapy sessions instead. 
    pain from the tumour/nerves has now gone mercifully. Side effects from treatment got bad at 2 weeks and I almost stopped the treatment, but then things got a bit better. What I’m struggling with the most is the skin around the creases at the tops of my thighs and around vulva. Dark red, itchy and really sore. There’s also like a long thin lump/raised area in a skin fold. They gave me aqua max barrier cream and vagisil though that has to be washed off before radio. Nothing helping much and might do a post here to see what’s helped other women. 
    nausea is manageable. Still weak and wobbly and no energy but I can cope with that to be rid of the cancer! 

  • tell them you want a prescription for Silver sulfadiazine and  Zovereen emolient wash...don't take NO for an answer, tell them a friend has been through the same treatment and she found it helped...because it was like the holy grail trying to find things that helped and I only got this 4 week after all my treatment ended, I feel, it I'd had it earlier, I wouldnt have suffered so much.

    As soon as you get out of your radiotherapy session put the silver sulfadiazine on at the hospital in the loos!, in the morning shower using the Zovereen, but obviously make sure to wash it all off, it just a cream wash, but quite soothing and not hash on your very delicate burnt bits.

    For the nausea, buy some fresh ginger, grate it, infuse it in boiling water and leave to cool then strain, i used to just sip this all day. and was fine.

    As for energy when you need to...your body is going through hell and back..

    Drink lots of water, you need to keep flushing all the toxins they're putting into you also makes peeing less painful..

    you can do this've broken the back of it...not long to go! 

    by the end of my treatment, I was walking like an 80 year old with a bowling ball between her legs  Slight smile

    Funny story to cheer you up...on my last radiotherapy session, I just wanted to get out...and then got the end of a very long corridor and realised i'd forgot to ring the bell..if there was one thing I was looking forward to was ring that damn bell!...well, I hobbled back up that corridor and rang it..this couple was there and said "do you want a photo" words "do f***k, I dont a reminder of this" .... Slight smile

  • Thanks Shelley, I’ll discuss with the team on Monday. Yesterday it got worse and loads of blisters appeared. I got someone to look at the burns before I had radio. She said it was ‘moist desquamation’ and told me to stop using the aqua max and vagisil. She gave me a gel called Flaminal I think, and also some pink spongey dressings  that you splash water on and fold onto the creases at the top of the thighs, and use underwear to hold it in place. Not feeling any better yet. It’s keeping me awake at night. I want to look into hyperbaric oxygen therapy but don’t know yet if this is something that can only be done after treatment is finished. I also have COPD so it can be contraindicated but at this point I’m willing to try anything. 
    can’t believe you forgot the bell Joy