Radiotherapy Support Thread (inc. Brachytherapy)

Hi, I had 4 sessions of brachytherapy last summer and experienced tiredness. Some days I just felt exhausted but it did pass. Rest as much as you need and don’t ever feel guilty for doing so. Sending hugs. 

Hi folks. 

I met with the radiotherapy team yesterday and the doc says I'll need 5 weeks off external plus 2 braccy sessions. 

Reading this thread has been really useful but I have loads of worries. 

Background in a nutshell: I'm 39. grade 2 stage 3a. Post surgery (including ovaries so surgical menopause), post 6 rounds of chemo. Unfortunately there were surgery complications and the surgeon nicked my left ureter so I've had a stent,  then developed a vaginal fistula, then had a long term catheter for a couple months waiting for that to heal,  then developed a stricture so got kidney infection so have a nephrostomy tube out my kidney to keep it working for now... 

I found the appointment yesterday quite hard as I'd got through chemo,  had some respite then here we are talking about my advanced cancer,  chances of recurrence and all the horrible forever side effects that could happen.  

I've got a heap of worries, I wonder if any of you can add anything from your own experiences. 

Is it really hard to manage pooping and keeping your bladder the right amount full? 

I'm worried about vaginal atrophy, dryness, shortness going forward. I already had a fistula. I hope I can have a normal sex life again one day. We tried the other day after a long hiatus and it hurt like being a virgin again.  

I know they give you little tattoos so they can aim it right. What if you put on or lose weight. Surely it's not that exact right? Even water weight...

Worried about the possible side effects that won't go away to do with Incontinence

What about exercise. Is it good to stay active or not possible? The doc warned me that it was a total slog and some people think of chemo as being the thing they dread but this is maybe as bad. Great pep talk,  but I appreciate the candour.  

Anyway I just freaked out about the side effects as my brain was too mangled to process which ones were really rare and which ones were common. 

Any tips or advice would be great as I will admit I've officially lost my cool today.  

Thanks

X

Hi Claire, welcome to the thread and well done for posting and reaching out for supoort! You have certainly been through the mill and I feel for you. Well done top for having completed your chemo. I only had radio and brachy but hopefully my experiences may help a bit. 
Re having a poo, I usually go in the morning so I requested afternoon appointments. That also made it easier as I live an hour away from the hospital. My hospital didn’t require enemas as long as you’d been in the last 24 hours. I emptied my bladder on arriving, and then again as soon as I was told to drink the required amount of water. So that wasn’t an issue. Re the tattoos it’s just so they can line up the machine - they advise you to try and keep your weight stable but there is some leeway. Re exercise, I walked my dog in the morning before I went and then drove myself to all my appointments. No side effects till week 4 and they were slight and easily managed with Buscopan as advised by the registrar. Post brachy I used the dilators with the recommended water soluble lube but preferred a silicon vibrator. You can get silicon dilators too. Some people get tiredness, I didn’t really at all, just went to bed about midnight rather than 1am! I’m 64 btw - and had all this at 62. I was advised to have a snack immediately after each treatment, to help renew my energy, so I usuall took a banana and some Quavers. I also had chocolate or ice cream when I got home as it’s important to keep up your calories as it helps your body make nice new cells. 

Clairey 

Sorry to hear of the problems you have had from surgery, I hope they improve.

I was also diagnosed with stage 3a grade 2 womb cancer, had a total hysterectomy, along with 4 sessions of chemotherapy and 25 sessions of external radiotherapy.  I have recently completed the radiotherapy on 13 June.

I did not find it hard to have the right amount of water before each session of radiotherapy.  The hospital gave me a water bottle, and you need to drink it all about 30 minutes before your treatment, as your bladder has to have the same fullness each time.  I had to use an enema about an hour before the treatment to make sure your bowel was empty, as the treatment goes on your ‘stools’ get softer and looser, and I didn’t need to use the enema for the last 12 treatments.  

The more treatment I had the more tired I felt, so towards the end I sometimes had a little snooze in the afternoon.  The main side effects I suffered was a bit of an upset tummy and rushing to the toilet for a pooh, which was quite loose! I luckily did not have diarrhoea, if you do the hospital will give you medication to help you.

The most exercise I did was going for walks with friends or alone, I personally did not have the energy to do much more, you could be different.

At the end of the treatment I had a meeting with the radiotherapy nurse, and was given dilators to use, you start using them two weeks after your treatment is finished and need to use them two or three times a week.  This will help with scar tissue and prevent the vagina narrowing.

I did not have brachytherapy, so not sure if you will have any different side effects.  Other ladies in the group who had this will help.

I hope this helps you and if you have any more questions just ask.  Good luck with all your treatment and let us know how you get on.

Ange

Hi Claire

I finished 7 weeks of external radiotherapy and chemo just under 3 weeks ago. I found the balance of full bladder and empty bowels a fine balancing act. I took a few Senna tablets each evening to make sure my bowels were empty. I emptied my bladder 1 hour before and then took the next 30 mins to drink 1 pint. You'll find a routine that works for you. The trick is consistency which can be difficult if your treatment isn't at the same time everyday. I did find fatigue a problem. I also had radio runs which meant I didn't need to take senna after week 3. I've started to use the dilators and just like you I was worried about my vaginal closing up. But it's ok. Plenty of lube and patience, it is a bit uncomfortable at the top where my tumour is but not unbearable so. Please do talk about your fears to you team, they are there to support you. As we are here for you too. X

Hi Claire

It is understandable to be worried at the thought of more treatment. I myself had the surgery and that was expected to be enough- however it wasn't. I also had chemo. By the time I had managed the surgery and then the chemo- the last thing I wanted to do was to have more treatment. I remember going to my radiotherapy consents appointment and thinking I just couldn't face anymore and the listed side effects really worried me.

Everyone is different but to answer your worries 1 by 1..............

- the making sure bowel was empty and bladder full was not much of a problem. It is only your rectum that needs to be empty and at my hospital for the first 10 days you are given a microenema to insert yourself. The thought was worse than the experience and once you have done the first one, it is ok. I managed the bladder ok as well- it was to drink 3 plastic cups of water, 30 mins before going in and it was ok. 

- I was worried about vaginal effects too but have used lubricants and used the dilators and haven't had any issues. 

-I was worried about the tattoos but they literally put a drop of ink on you and use a very fine needle to pierce the skin. You will be weighed each week and a big change either way could affect treatment. I was told that it would mean another planning scan and then recommence treatment. However I did lose weight during treatment and this did not need to happen for me. 

- It is natural to worry about incontinence. I did have some diarrhoea during treatment which meant I could need the toilet urgently. However you can be given meds to help get things under control and to be more predictable. You can also be given a Can't Wait card from your nurse and can get a Radar key if it helps. Sometimes it helps to prepare by finding out where the loos are if you go out and to take some fresh undies/wipes in case. If you do get Late effects then there is often a lot that can be done- and remember they have to tell you everything that could happen so you can make an informed decision but I know from being on here that many ladies do not have many side effects at all.

- With exercise- as with it during chemo- do what you feel you can manage but make sure you get plenty of rest. I was able to be a lot more active during chemo than radiotherapy. I found the effects accumulated and by the end- all the travelling to and from the hospital, the expected tiredness from the treatment and some of the side effects meant I didn't feel up to much. When I did exercise it tended to be short walks.

I hope this helps a bit. 

If there is anything you want to ask, then please do so.

Good Luck

Jane

Hi ladies - see my profile for full story, but I am having adjuvant therapy for undifferentiated endometrial carcinoma. Chemo has just finished, and have my planning meeting with radiotherapy in a couple of weeks, and due to start 5 weeks of daily external plus brachiotherapy 

I have spoken to the doc, and got a couple of leaflets, and the possible side effects (short term, but more particularly long term) are pretty daunting. I’m really looking to hear your experiences to help me. 

because the docs are saying I could be cured already and this therapy could all be unnecessary, it makes it a trickier decision

When I spoke to the doc, she told me that the protocol for this adjuvant therapy is relatively recent (and I have seen some research papers which show much better outcomes for my aggressive cancer if adjuvant therapy is undertaken). She also told me she had a lady in the list who had the same cancer as me who had surgery 4 years ago before this protocol was in place, and her cancer has returned. this significantly impacted my decision at that point to press on.

I’m also keen to know what I should be asking - eg, I hadn’t appreciated that once you’ve had radiotherapy in an area, you can’t have it again, so that’s going to be one of my questions  

thanks for any help you can give

Hi Coco

I understand that this is a difficult decision to make and any treatment is about weighing up the risks and benefits and making the decision that is right for you. I would just advise that you get as much accurate information as you can so that it is an informed decision.

I also had adjuvant chemotherapy and external beam radiotherapy. If you want timings then you are welcome to click on my name and my profile will come up. 

Mine was also an aggressive cancer and I am still on 12 weekly checks with the oncology nurse team. Recurrence is always a fear. 

I still have side effects from both treatments that impact me daily. However I do not regret having the treatments and I believe I manage them quite well. Everyone is different though and some people have little effects that resolve fairly quickly at the end of treatment. However with Late effects these may not occur for some time. 

With the lady mentioned by the consultant, whose cancer returned- although hers did, it does not mean that yours will and there may be many others who have not had a recurrence. Her medical history, age, other health conditions, even stage could well be different to yours. 

I went into my radiotherapy consents appointment with a list of questions and I found it really helped to get answers to the things that mattered most to me, rather than what the consultant wanted to talk about. The consultant was happy to answer my questions first and did so quickly and then we moved on to what she wanted to say. I think your idea of questions is a good one.

These are some suggestions that may help...........

1) How likely am I to have a recurrence and where would the recurrence likely to be?

2) What percentage of people tend to have short term effects vs long term effects?

3) Is it enough to have just the chemo at this stage? What extra percentage protection is gained from the radiotherapy.

4) Does the radiotherapy have to take place straight away or could a break to allow my body to recover from chemo help? 

5) Would it be an option to have regular scans/ frequent check ups and not do radiotherapy

6) Would it be an option to just have the brachytherapy- as there are less side effects and it seems to be better tolerated.

7) If my cancer is likely to return, and because radiotherapy to the same area is not advised- would banking the radiotherapy be an option- so to use it for the recurrence.

8) If I have a recurrence, what are the options for treatment

9) How does the radiotherapy prevent my particular cancer coming back and does it lead to overall better survival.

10) What doses/number of sessions would I need? Is there an option to have some sessions now and some at a later date. (I don't think this can be done but might be worth asking. 

11) Is there anything in my own medical history that would suggest I am more or less likely to have a recurrence and is there anything in it that would suggest I would get more severe side effects than others. What support is there for the side effects. 

These are just ideas and similar to the ones I asked. You probably have others as well. I remember feeling similar to you once getting through chemo- I questioned whether I needed it. For me it came down to it was better to try to prevent a recurrence than try to treat one that had happened. 

It is a tough decision to make and if talking it through would help then please do give the Support Line a call.

If there is anything else you need or want to ask, then please do so.

Jane

Hi .... I’m due to attend my radiotherapy planning appointment tomorrow and I don’t know what to expect apart from I have to do a micro enema tonight then another an hour before my appointment.  Please can you tell me what happened at your appointment.  I also have to have 25 radiotherapy sessions followed by 3 sessions of internal radiotherapy then 4 rounds of chemotherapy x

Hi! I'm 3 sessions into a nearly 6 week stint. 

I had to repeat the planning scan because I was literally too full of sh*t! 

I took senna before bed and laxido a few days leading up to it. I still had some further up but apparently they could see what they needed to see so we just pressed on.  

It might be a but of a balancing act for me as some people have slower transit and drugs sometimes contribute. The staff are understanding and it's quite normal.  

I've been doing senna and laxido before bed and a micro enema if I think I need it. 

You could talk to them about putting your treatment at a time that suits you and your daily "routine" as my appointments are all over the place and the pressure to poop early morning doesn't help! 

Good luck with the scan x