So following on from my hysterectomy pathology results 5 weeks ago, i now have my plan. Starting my radiotherapy on 10th april and chemo on the 11th. Ill be getting 25 radiotherapy sessions and five chemo.
Few questions for the ladies who are or were going through it:
-is there any do’s and don’t prior,during and after treatment?
how bad are the radiation burns?
-will i be able to drive myself? 45mins each way
any supplements i should or shouldnt be taking?
what was your worst side effect and how long did it take to feel relatively normal again?
any recommendations for creams, supplements etc…
Id love to even hear everyone’s treatment stories and hopefully some great tips xx
Hope everyone is doing good xx
@Sarah1987 so glad you’ve got the plan! In answer to your questions
I didn’t have any radiation burns, but the radio team can prescribe cream if you need it. I didnt drive myself, but felt very fatigued a couple days after chemo and I couldn’t have driven, but this mainly fell on the weekend when no treatment so was ok as thankfully could stay at home.
I would say speak to your nurse about supplements as you’ll be taking steroids etc. so need to make sure no interactions.
Worse side effect for me was fatigue. The first week was awful, I’d never felt anything like it at all, but I managed it through sleeping when needed, eating and drinking regularly and the other weeks weren’t as bad. It took a few weeks to feel normal again and get my energy levels up and I had to push myself everyday to do something physically like walking dogs, going to the shops but got there eventually!
Tips - try and get out for a walk most days if you can and feel up to it, the fresh air works wonders for your mind and energy levels. Eat and drink well, I found little and often was the key but most importantly be kind to yourself!
I’m 2 months out now and have my mri and pet scan at the end of the month. I’m feeling really good, all symptoms I had before have gone thankfully. It’s on,y now looking back I realise that I actually felt really poorly before diagnosis and now I feel so much better than I did
Good luck with your treatment, you’ll smash it xxx
Hi @Willow23 …sorry im only seeing your response now. Thanks so much. Great to hear your sign effects werent too bad. I’ll be delighted if thats whats in store for me. I’ll check with the nurses re supplements etc… ive just been taking revive active so im hoping i can keep taking this as it really does help with my energy levels. Did you experience any hair thinning with the cisplatin?
Best of luck for your results at the end of the month. Fingers and toes crossed for you xx
2017, similar to you I had a radical hysterectomy followed by chemo- radio. I had 6 chemo, 25 external radio and 2 internal radio (brachytherapyy).
No skin problems due to radio; I used Aveeno body lotion as advised by the radio team.
My oncologist advsied me to take a daily multi-vitamin; I chose Centrum for women.
During treatment I felt nauseous a lot of the time, especially just after the chemo, but was never actually sick - the prescribed anti-emetics worked well for me. I lost my appetite particularly as time went on and my BMI went from 19 to being underweight so the dietitian prescribed nutritional high calorie drinks which helped.
I had a LOT of diarrhoea and maxed out on immodium which just about saw me through. This is the side effect I remember the most because it was so scary at the time.
I also had profund fatigue but just gave in to it and rested when I needed to. I defo second what Willow23 says about trying to get out for a walk most days; I did this even if it was just up to end of my (fairly short) road and back.
I wasn’t aware of any hair loss due to cisplatin but, tmi, the radio caused me to lose all my pubic hair - temporarily.
The diarrhoea is what scares me the most, i know that probably sounds silly but it just makes me anxious. Hopefully it wont be too bad for me. The pubic hair loss I’ll definitely welcome lol. Yes ill definitely try get out walking as much as possible. I still get very swollen since the hysterectomy so linking in with my hospitals physio team to see what small excersizes i can do.
Ive put on quite a bit of weight since my diagnosis in December, mainly from not being disciplined and not being active after the surgery. Bmi is now 32! I wonder if it would be ok for me to lose a bit of weight if my appetite does drop… im getting married in September so my pre diagnosis weight goals have gone out the window cos of no gym etc…trivial in the grand scheme of things i know.
Im starting to wonder about the brachy, most people seem to get it but my radiotherapy consultant said she doesnt think i need it. My tumour was all removed in surgery but a small bit found in 2 lymph nodes. I might query that again xx
@Sarah1987 I hope your treatment goes well. Im also due to start chemorad post radical hysterecromy on 22nd April. I’m not having brachy either. Stage 1b2, 1 margin is close but no lymph nodes involved. Invasive smile adenocarcinoma. Have you had your tattoos for radiotherapy? I’m dreading it and having my planning scan today. Where are you still getting swelling post op if you dont mind me asking? Abi x
Oh best of luck today. The tattoos are just a little pin prick. I had my bloods taken, height and weight taken and then the scan. I was in and out in just over an hour.
Im thinking maybe because they removed all of my nodes thats why i dont need the brachy.
My swelling is more upper abdominal. I think its quite normal to experience it for a good few months after. I had ab seperation during my pregnancy 2 years ago and thats part of mynissue aswell too. How are you feeling after your hysterectomy? Feel free to message me anytime x
I was advised to try and keep my weight stable after I’d had my tattoos done, so as to enable consistency/accuracy in positioning for the radiotherapy.
My post op histology had showed: clear nodes, lymphovascular space invasion, perineural invasion and a close anterio margin. I had 2 brachy sessions which were pretty straightforward; about 15 minutes each and just slightly uncomfortable. I don’t know exactly what negative impact the brachy has over the external radiotherapy; I was advised to use dilators regularly for at least a year to prevent adhesions forming in my vagina.
I can empathise with being anxious about the diarrhoea; we’re all different and there’s no knowing until you get there. I did get a very sore butt hole lol: for me frequent application of vaseline helped a lot - but check with your medical team. I also kept some continence pads to hand in case of accidents.
That makes sense about keeping weight stable. Yes, your right about everyone being different. I’ll just need to keep my fingers crossed i dont get too bad. Its always the unknown that makes me so anxious.
Xx
Hi @Sarah1987 my scan was ok but it took ages as they were running behind. My bladder was too full so had to refill. We got there in the end though.
I’m feeling well post op so not looking forward to treatment causing me problems. Hopefully it’ll be a stright forward 5 weeks and then start to recover again.
Are you starting tomorrow? How are you feeling?
Ah sorry to hear it took so long. Thats the crappy thing aswell, certain things are really out of our control. Yep im starting radio tomorrow and chemo thursday. Ive asked them to refer me to their physio who i think im meeting this week or next. I want to have some sort of control over the whole situation so hopefully she can go through some pelvic floor strengthing and other light excersizes i can do. Xx
