As the days go on from my diagnosis and being told that I will be needing chemorad not a hysterectomy I’ve obviously been doing some research and I am really concerned about the damage that can be done from this treatment…is there anyone that can give me any advice on what to do and what not to to to help myself through the treatment…anything that I can do to lessen the damage from the radiotherapy? Does anyone one know if there lasting side effects or damage to our body’s after this treatment…I know they have to try and rid me of the tumour but the idea of poisoning my body effectively doesn’t really sit well with me…also reoccurrence is massively on my mind! I know I should to be putting all my energy into fixing myself firstly before I start thinking about it either not curing me completely or the fear of it coming back but I just can’t shake it until I have some answers hence the last 2 nights of no sleep! PET scan Thursday not particularly keen on the idea of being injected with radioactive material either especially as she followed it up with stay away from children for 6 hours after as it’s a high dosage of radioactive we are giving u!!! Just feels like they are going to be filling me with all this poison so panic has set in once again!
Thanks for listening again
Kay x
Hi Kay,
Thankyou for your question. It resonated so strongly with me, that after lurking in here since my own diagnosis in November and the subsequent chemo radiation, I finally decided to de-lurk and offer some thoughts. For context, I'm just over two months since my last brachytherapy.
No one can tell you what you must do, you can only really pull information together based on how you feel psychologically & what family/friend support you have, how your body responds physically & what your expert oncology team can offer you in terms of their clinical experiences. Anything I say, is just what worked for me.
Like you, I read all the stuff about the immediate & late effects of pelvic radiotherapy and had a big wobble. Not going ahead with chemo rads wasnt really an option to me because my para aortal node was lit up like a beacon and my mobility had been significantly affected because of the size of my pelvic lymph nodes. I just decided that if I was lucky enough to survive this, I would rather survive this with a tricksy bottom or even a colostomy bag (worst case scenario) than not live long enough for that to happen. My Consultant had used the phrase 'treatable rather than curable' to me so I was properly freaked. So far though, the immediate side effects have been a walk in the park for me, as to late effects? Who knows, but at least now I've given myself half a chance of being around to see if they happen!
I had extended beam radiotherapy (basically a longer treatment field to include that para aortal node) and each treatment involved me taking a mini enema to empty my bowel, and drinking loads before the treatment so my bladder was full. This helps position the bladder & bowel in a way that helps to minimise radiation damage. I would have a mini scan on the radiotherapy treatment machine before each treatment, so the radiologists could target the cancer accurately every day and would have to lie quite still while they did that so I was in the same 'scanned position' when the actual radiotherapy started. All in all, it would take about 20mins. I took all of this (the drinking, the daily enema & lying still) really seriously so that I could give my treatment the best chance to primarily target the tumour. Not all radiotherapy treatments & scanners are the same, so some people might not have to use a mini enema before treatment, and some might not have the mini pre-scan, but I think everyone is encouraged to have a full bladder.
Like you, I was worried about the chemotherapy. I started actively trying to drink 2.5litres of non caffeine/sugary/fizzy drinks per day before my treatment started, and I carried on doing this right the way through. I also stopped drinking any alcohol during this time, although tbh I didnt ever really feel like it! I wanted to help my liver and kidneys flush out toxins as much as I could, but I also wanted to help keep my bladder tone and avoid a urinary tract infection. I went right off coffee anyway (I was a proper coffee fiend so that was astonishing!) and started sipping vast amounts of green tea (which I'd previously thought was glorified dish water.....), unsweetened cranberry juice, & fridged tap water (some people used lemon slices to perk water up, but I went right off citrus & ginger as well). Doing this meant I was always hydrated for the radiotherapy, I didn't pick up a bladder infection and if I was going to have an attachment to the loo I could do so partly on my terms rather than just as a reaction to chemorads. It also helped at the beginning of the week when I would get constipated after chemo & associated drugs/steroids, and later in the week when it helped keep me hydrated when I had the runs!
Everyone reacts differently to chemo rads. I puked my guts up in the first week, which was probably my para aortal node's giant FU response to the radiotherapy. I had a fantastic consultant radiologist who was always liaising with the medical team and who put me right with the next level of anti sickness meds straight away. No more puking. Any symptom, side effect, concerns was of massive interest to my team right the way through. My strongest advice is to never 'sit on' worries about whether a symptom is relevant or not, just tell them. The doctors are actually seriously concerned to get your chemo dosage right balancing the tricky line between treating the cancer and not permanently damaging the rest of you, and the radiotherapy team view their the treatment the same way. Tell them. Everything! I had a weekly meeting with my Consultant Radiologist where we went through every bodily function (and my head!) and she STILL said I shouldn't wait if something came up before the next meeting.
The place you are in now, waiting for scans and treatment to start, was for me, the absolute worst time. You WILL get through this. It was a roller coaster ride for me. I cried and shouted, I over thought a lot of stuff and spent ages freaking myself out on the internet. My husband and I did a lot of freaking out together too. Then, we agreed that freaking out was perfectly reasonable under the circumstances, but we had to be immediately practical too. We went shopping and bought a vat of E45 cream which I rubbed into my tummy and thighs daily, even before the treatment started. (I didn't suffer from any redness, soreness or radiation burns). We bought a proper thermometer (to monitor my temperature on chemo), supermarket brand paracetamol (its more expensive for the hospital to prescribe it so they generally encourage you to get it yourself if you can), panty liners/pads in case of post exam bleeding or leaks, lip salve. You get my drift - I even bought myself bright & comfy new PJ's which were fabulous about three weeks in when I spectacularly caught flu and gave my medical team a bit of a worry! You could also think about starting a diary, I'm not usually one for this but I did it, and apart from keeping a record of what's happening and how you are feeling, it's handy to be able to update when hanging around in waiting rooms and on long chemo days. Looking at it after the treatment is over, reminds you just how bloody awesome you've been....
To distract ourselves, my husband & I also made quite a few freezer ready meals & sauces, which were invaluable later on when daily radiotherapy and all day chemo and other appointments eat up your time. Pro Tip - I ate a lot of buttery mashed potato (still trying to burn the buggering stuff off my hips!). He also took me out to dinner a few times. It made us behave in public and talk about other things. It made me put make up on and dress up when that was the last thing I wanted to do, but it also reminded me that I was much more than just a tumour. The fabulous Sunday Lunch (with wine & desert) we had on my last day before my first chemo, was the last meal out I could tolerate for next two months - right through Christmas & New Year. We made this time count!
I think I've rambled on for far too long now, but your worries & research right now are reasonable & understandable. I'm two months post treatment and my skin, bladder & bowels are all back to normal. I think I've been lucky and can't promise you will be the same, but you will recover and you will be able to deal with any side effects much more practically than a great great tumour still lurking about in there. You've got this covered, and a whole bunch of people in here to help you keep it that way. :)
What wonderful advice !! I too am like Kay waiting to start treatment. Diagnosed 2B cc this week. I'm driving myself crazy worrying how I will cope with the side effects so reading your experience has really helped.
Hi Kay
This waiting to start treatment is driving me insane. No one has ment me needing a PET scan. I have had a CT and MRI for my staging. Was it your oncologist or gynaecologist that requested you have one ? We can help each other through this.
Julie x
Hi Julie,
Happy to help. People like Tivoli, Lolli, Phileepa & many others, kept me sane with their contributions in here. (Thanks ladies!) I'm happy to give a little back now I'm on the other side of this bit at least.
Just so you know, I had an MRI (Abdo/Pelvis) & CT (Chest) for initial diagnostic purposes, but not a PET. My three month follow up scan will be another MRI. Different centres & countries have different PET scanning access, waiting lists, budgets & radio isotope exposure tolerances. My team will only consider sending me for a PET scan if my MRI comes back showing something iffy that they can't decipher amongst the post radiotherapy inflammation and scar tissue. I'm OK with that...
Thankyou so much for your advice it helps massively at this very uncertain time in my life! X
Hi Julie...it's my gynaecologist that's requested the PET scan...I think the reason he wants this done and a eua is because he's not 100% sure on my staging initially they said 1b2 but I think he's now thinking its closer to stage 2a...his words were I just want to be 110% so I'm hoping that is the only reason and nothing more sinister! but after you ladies have said you haven't had PET scans I'm slightly worried now in case he's not telling me everything!
Kay x
Hi Kay,
I don't miss the days of waiting as that was the worst part of the journey for me. My radiation was also extended to cover a large area.
You can see my treatment history at the bottom which was quite extensive. I'm happy to report I also had few side effects. I am now 8 months out and so far aside from a few discomforts periodically (which probably isn't cancer or treatment related) I am perfectly fine.
The advice to drink water is the best that can be offered. My rule was a minimum of two litres a day and I have continued with that since. Do everything your medical team suggests even if you hate it!
Wishing you all the best ❤
Great advice thank you! I too am about to start chemoradiation this week and am trying to find out how best to minimise side effects so this post is super informative!
x
Hi Julie just wondering how you are and how you are finding the treatment.? X
Thanks Cheery, linked from dog_lover's post on chemo/rads and you've put my mind at ease and given me loads of tips.
Thanks!
x
