Radiotherapy after hysterectomy

Hi CMT,

I haven't had radiotherapy but lots of the women in the group have and will hopefully be along to answer your questions soon, To try and put your mind at rest a bit whilst you wait, from reading past posts I don't remember anyone having any horror stories and folk usually say it's not as bad as they thought it would be. I think the planning appointment takes a bit of time but after that session it's usually a lot quicker. The ladies will hopefully have some top tips for you to help you through too.

edit: here is a link to a past post with some hints and tips https://community.macmillan.org.uk/cancer_types/womb-cancer/f/womb-cancer-forum/185455/radiotherapy---any-hints-or-tips 

lots of love

xxx

Hello ,

The thought of hacing to go through radiotherapy is quite daunting. I remember being very anxious about it when I was told I needed both adjuvant chemo and external radiotherapy after my surgery. I had 25 sessions of external pelvic radiotherapy over 5 weeks. It was painless and most days very quick - about 10 mins in the treatment room. You'll get an appointment with a radiologist to discuss everything followed by a planning scan appointment, where they take lots of measurements, apply some tiny black tattoo dots (used to line up the radiotherapy beams each day) and explain the procedures. It's a good chance to ask lots of questions. You usually have to drink a set amount of water before each treatment. Each day you get changed (for me it was just removing the bottom half of my clothes), they position you on the treatment table and then ask you to lie comp,eye,y still while they leave the room and administer the treatment. They can see and speak to you through an intercom throughout and can stop the machine if there are any problems. You tend to see the same teams of radiotherapists during treatment so you get to know them. Each day you'll be asked how you feel and they'll give you support and medication to deal with any bowel or bladder side effects. Most of us get a few. I did but they were well co trolled with medication. You'll also see a consultant or a member of their team each week to discuss how things are going, Radiotherapy does make you tired towards the end of treatment so rest lots, pace yourself and keep well hydrated. I found it harder because I'd finished chemo 6 weeks earlier and wasn't fully recovered from that. I think most of the ladies here would say it wasn't as bad as they'd feared. The team will take good care of you - don't be afraid to talk to them about any problems or concerns during treatment.  Some ladies do have some minor side effects that continue after treatment - sometimes this is because the radiation continues to work in your body for 2-3 weeks after treatment finishes - you don't feel instantly well afterwards. Some of us have mire lasting side effects - for me that's an occasional urgency needing me to rush to the toilet, plus my digestive system doesn't tolerate garlic, very fatty or rich foods as well as it did, but it's manageable. Some ladies don't have any lasting effects at all. We're all different and we all respond differently to treatment. 

I hope that helps a little. Sending you lots of good wishes that all goes well with your treatment x

Dear Fairycake

Thank you so much for your reply. I don’t know why I am so upset because I had an idea I would be offered radiotherapy so it wasn’t a shock it’s just when they say it to you face to face it’s like a big emotional punch. The hysterectomy wasn’t nearly as bad as I was expecting so I’m really hoping the next stage won’t be either.  The main thing is I feel at the moment I’m on the up and now with the radiotherapy it seems like a backward step.  I just want all the treatment to be over and get on with my life for my family as well as myself.  Fortunately I’ve got a very good family my husband has gone from zero housework etc to taking charge of everything and not doing too bad either.  Thank you for your support. xx

Dear Arla

Thank you so much for your reply and for the information link.  I’ll have a look and see what it says.  Now the initial shock is passed I’m sure I’ll be able to get on with it just as I’ve done with the earlier treatment which wasn’t as bad as I was expecting.  I’m still tearful today but that’s nothing unusual with me I can cry at adverts on the TV.  I’ll be more at ease when I know exactly what’s what.  Thanks once again for your support. xx

HiYa,

firstly, welcome! Sending hugs, you’ve made a good step posting here, always lots of ladies to help with things like this.

I totally get where you are coming from, I was the same about my treatment when I found out I was to have radiotherapy. My surgeon had warned me that I’d face chemo so I was prepared and had researched it all, and then I was told no chemo but radio instead and I was completely taken aback and scared! But, it really wasn’t as bad as I had imagined.

I had stage 1 grade 1 and a hysterectomy back in March. Then about 6 weeks after the surgery when I was healed more (I had open surgery) I started the treatment stage. I was given 25 rounds of RT over 5 weeks. It became a routine to head to the hospital everyday, with weekends off for good behaviour! Lol

The planning stages aren’t too bad, it’s a CT and then a few little tattoos they’ll mark on you so the treatment machine is lined up in the exact same position every time. You’ll have the ‘chat’ with a nurse before your first session and they will hopefully be able to help ease your concerns. Plenty of fluids before each session and an empty bowel. 

It is very daunting at first, but in the end it became a bit of me time. I’d go alone and take a book with me, I’d get there earlier than my appointment time and I’d sit and read a book in the waiting area. It helped keep me chilled and calm. And then just 10 minutes in the treatment room and I wasn’t on my way home again.

i did have 2 sessions of brachytherapy at the end too (essentially internal radiotherapy), some women face this and some women don’t, everyone is treated differently so it depends on individual circumstance. Brachy wasn’t as bad as I feared either, all done swiftly and easily.

i did have issues with my bowels but that settled once treatment stopped. I do have more of an urgency to pee but I’m retraining my bladder so it’s not as bad as it was. Moisturiser is advised and the nurse will advise what you can and can’t use on the skin, no SLS I think was what I was told. I used Aveno cream and it was fine for me. I didn’t feel too much fatigue at the time but it’s now starting to hit me a bit more and I tire easily so I take more naps! Lol

Im now just waiting for a final CT scan which is actually tomorrow, and that’s just for reference if needed for the future, I know not everyone will have a final CT, again everyone is different.

The most important thing is rest, your body has gone and is going through lots. Rest and relax as much as you can and let hubbie do the housework! 

There are lots of ladies here that can help with advice and support, we are all here for the same reason after all.

sorry, this has turned into a mammoth reply!

hugs xxx

Dear Chelby

Don't be sorry for the long reply it was kind of you to take the trouble to set it all out.  I had a phone call this morning and have my first appointment next Wednesday pm so I’ll be glad to get that out of the way so at least I’ll  know what the plan is going to be.  With the op and the tests I used to count the days down on the calendar and I found that helped with getting to the end of the treatment so I’ll do the same with the radium.  I just feel I can’t plan anything at the moment and we already had holidays booked for October and November before I had my diagnosis and I’m not sure if I’ll be able to go on either.  Hopefully as you say it won’t be as bad as I’m expecting but anyway it has to be done and all the support and advice will be a great help. xxx

I hope it all goes well next Wednesday. Once it starts it will soon be over!

i counted the days too, in fact I used my Facebook to do so, and I would post a positive/motivational thing every treatment day. It helped me and it helped my friends and family to support me. Their comments always got me through and lifted me on low days. I found counting down better than counting up lol

It’s tough not being able to plan, I had to move things around for a few months while everything was happening, but it’s great to now be able to commit to things again. I hope it works out that you can go on holiday at the end of treatment, but remember you still need to rest and be prepared for your body to react. 

We are always here should you have any questions or just need lifting up. I remember I asked questions about toilet related issues quite a lot in the early days, and each time I got a good reply and didn’t feel ashamed for asking! Lol So always ask if you’re not sure, someone will be able to help!

xxx

Hi CMT,. Fairycake and chelby have given you some great advice and information and is like to add my reassurance to that.  I was exactly where you are now in June last year.  I'd had my hysterectomy and thought that would be the end of it so was shocked and upset to be told I would need 25 rounds of radiotherapy.  It did seem like a huge mountain to climb so I really do understand how you are feeling.  In fact the whole adventure was low key and perfectly doable.  I drove myself the 60 odd round trip to the hospital most days with no trouble.  I had to drink a certain amount of water or juice  before each treatment - the reason for this now that a full bladder pushes the bowel and bladder out of the way of the area being treated so side effects are less.  The routine when I was called was MTO get r into position on the treatment bed with pants pulled down to hips and top up to just below the bra so the tummy area being treated is exposed.  The machine, though it looks huge moves all around you without touching.  You feel nothing.  I would just lay there for the few minutes it took, there was usually some music playing and I was disappointed that one day the treatment didn't last long enough for me to hear the rolling Stones 'gimme shelter' all the way through.  You get to know the staff and the other patients.  I did have some bowel issues from the start but they sorted me out very quickly with medication.  They do ask you all the time how you are feeling and are very quick to sort out any problems.  Towards the end of the treatment I began to feel quite fatigued but by then the end was in sight.  Looking back, I'm so glad  I agreed to have the radiotherapy treatment as it lowers the chance of recurrence by a significant amount.   Most people find the travelling to and from the treatment centre the most irksome part of the whole thing.  I didn't mind it.  My one tip would be to remember to arrive for your treatments early tongive you time to drink the water and for it to reach your bladder.  I found it took about 40 minutes to be ready but not too uncomfortable.  And my other tip is to have a slightly blander diet thannusual, avoiding spicy food or too much roughage, so as to not irritate your bowel.  Don't be scared xxxxx

Thank you for your kind words of encouragement it really helps to hear the experiences of others who have been through it all.  I’m feeling more positive today, yesterday was a bit traumatic hearing the news but I’m coming to terms with it all now and just want to get it started and over and done with. On the plus side I had a lovely dinner cooked tonight by hubby who has been doing his first cooking in 51 years of marriage so not all bad!

Hi CMT,

I see you have lots of information and good advice on here, so I will just add a couple of things. I did not see my consultant weekly, just at the beginning and after completion, but had excellent care from the radiotherapy team. 

My radiotherapy was a type called GMAT, all the same painless procedure as others have described, just no tiny tattoos, as the machine took lining up images each time before delivering the actual radiotherapy.

You do get more tired over the weeks as it goes on, and I had some internal abdominal soreness towards the end , but I felt pretty much recovered from the effects 4 weeks after it finished.

Best wishes x