Vaginal cancer diagnosis and treatment

Hi Crazy Daisy and welcome to the group.

It’s natural to be nervous when you’ve had a recent cancer diagnosis, as everything is new and scary but it’s another step on the way to getting treatment started where you can focus. Is the brachytherapy in addition to other planned treatment?

I wasn’t able to have brachytherapy for my cervical cancer although it was planned to be the same type as you are to have-the lying flat and not moving for 20 plus hours.  (There are different types of brachytherapy depending on the type of equipment available at your hospital and what type of cancer you have).

You will be given lots of help to get through this from the nurses and your team in terms of pain relief and making sure you are comfortable. If the brachytherapy is part of a treatment regime which follows other treatment like external radiotherapy, I would try and park thoughts of it in your mind for now and get through anything else first. 

Brachytherapy is a big hitter and can be the final blast to get rid of the cancer, so it’s worth going through a couple of days of unpleasantness to have this. I was devastated not to be able to do it as it wasn’t my decision.

Are you able to share a little more about your full treatment plan to see if there’s anything else we can help support you with?

Sarah xx

Hi Sarah

I now have my treatment plan and I will be having chemo, external radiotherapy and the internal brachytherapy. I start treatment on the 15th March,. So, now playing the waiting game.

Hi Crazy Daisy 

Not long to go but the waiting can seem endless at this point. Your treatment plan mirrors mine-my original tumour was growing into the vaginal wall. Hoping your treatment will go smoothly-just make sure that you make your team aware of any side effects if you have any and they will be able to help.

Pelvic radiotherapy can cause some bladder and bowel issues, although not everyone has these, so please feel free to post with any questions or if you’re looking for any advice and I’ll try to help based on my own experience. Best wishes going forward.

Sarah xx

Hi, it's been a little while. So I had my 1st clinic appointment today, ready to start next week. To be gonest the doctor just filled with dread. Originally the consultant talked about the chemo and radiotherapy and I felt kind of OK, but today the doctor told me of hair thinning, infection, blood clots, soreness, potential blood transfusions, bowel and bladder issues. I came away feeling so down. They told me I wouldn't lose my hair, but now they tell me it will thin. I now feel so scared.

Hi Crazy Daisy 

Thanks for coming back with your update-I know it’s a lot to take in when you are advised of possible side effects, but what I would encourage you to focus on is that while they must tell you all the possible side effects, it doesn’t mean you will get all or any of them. It will all depend on how you as an individual react to treatment. It’s just part of process for you to give informed consent. The key word is “possible”.

What chemotherapy are you having? That will determine what might happen with your hair. I was on Cisplatin and my hair wasn’t affected at all-it didn’t even thin. 

Nothing is without risk, but if you find you are having any side effects once treatment is underway, make sure to speak up and there is likely to be a solution to help-for any pain, and for any bowel and bladder issues if you have these. 

I was in hospital recently for a procedure which also had a lot of possible side effects, but I still signed the consent form and went ahead with it. It was scary, but I had to have it done. 

Hang in there and try not to dwell on what you have been told today. Once you start your treatment, I hope that your mind will settle once you no longer have fear of the unknown. Please keep us posted and ask any questions you need to. 

Sarah xx

Hi Crazy Daisy 

PDR BRACHYTHERAPY - I have tried to link this for you but if it doesn't work use the spyglass and enter these words in. One of the womb group members gives a detailed account of this treatment. It may give you an idea of what to expect.

Hope it helps,

A x

Crazy Daisy, I'm so sorry to read what a bad time you had with the consultant, I've found these people are so focused on the idea of treatment, they forget that people have feelings, especially women where their hair is concerned. Try not to worry about your hair - it's the very least of your problems. You are about to start a whole new, pretty hideous journey which will take over your entire life, but hopefully it will sort out the cancer. There is pain involved, and you will feel totally out of control of your life, but stick with it, I'm still suffering after effects two months later, but I keep promising myself it will eventually be all right - keep going and hopefully you have a supportive family/friends who will help you through this scary time Xx

Thanks, I'm trying to keep positive but I'm totally terrified underneath my mask. We have a 6 year old daughter so trying to keep life as normal as possible for her, but now reading about the discomfort bowel and bladder issues I'm not sure how "normal" I can manage. Was hoping to carry on working but the doctor said I might find the soreness too uncomfortable. Also my radiotherapy appointments are at late times and weston Park is around 45 minutes away, I refuse to drive in Sheffield as I'm not that confident a drivers it's trains and taxis.

Oh Crazy Daisy, I'm so sorry to read your reply, an awful journey if you don't have someone to take you. From my own experience you won't be able to keep working so will need so sort out with your employer about sick pay, yet another worry,make sure you do this or you'll be worrying about money as well. Macmillan Cancer Support can help with this, as with most things.X

Hi Crazy Daisy 

I had all my treatment at Weston Park, and it used to take us over an hour to get there by car. The staff at radiotherapy were lovely, but I would say it’s a very busy department and I had lots of delays-machines being in maintenance and simply the volume of patients needing treatment. I found that quite difficult at times in terms of knowing how long I would be there on any given day. That might be an issue when using trains. 

In terms of the potential bowel and bladder issues, I found one factor can be urgency to go. For that reason I was glad to be in our own car. I’m not sure I could have managed public transport to be honest. 

I was retired when I had treatment but would not have been able to work, especially as the treatment went on. 

Sarah xx