Radiotherapy support

Hi again Jayess, I had arthritis in my lumbar spine before my cancer and hysterectomy - not diagnosed, I just knew. Before my cancer diagnosis I had started getting leg pains on prolonged standing, but I couldn’t cope with having that investigated at the same time as the cancer so I left it till after my op and treatment. My oncologist told me before my treatment that she’d refer me for a DEXA scan post treatment to make sure my bones were okay, because with my hypothyroidism (which I’ve had for 30+ years) it makes me higher risk for osteoporosis. My post treatment DEXA scan indicated I had osteopenia (ie can be a precursor for osteoporosis) in my upper lumbar spine (L1-3), plus in both my hips, so calcium supplements were advised. A repeat DEXA 18 months later showed some improvement in one hip so far, so I’m hopeful for further improvement. I’m due another repeat DEXA  soon. After my treatment finished I went to my GP about my leg pains. An MRI showed I have severe spinal stenosis - hence the leg pains. This was pre existing (ie pre hysterectomy and treatment) and wasn’t down to the radiotherapy. The surface of my lower lumbar spine did show some whitening, likely from the radiotherapy, but no mini fractures. This should improve in time. I’d rather have this and the reassurance from having had the radio and brachy than to have to deal with the full risk of recurrence. 

Thanks for this info. I had nil symptoms before finding out I had endometrial cancer. It just started with something bursting inside me which I liken to your waters breaking when you’re pregnant. Still I felt very well. I had a total, abdominal hysterectomy and even that wasn’t bad. Still I felt very well. It came as a total shock to find out I needed radiotherapy and brachytherapy. The thought that I could now become ‘ill’ by having it frightens me. I also don’t want the cancer coming back. I feel damned if I do and damned if I don’t.  Reading everyone’s experiences on here has eased mind a little but I still feel like I’m playing Russian roulette. I had my radiotherapy planning CT today and I was told ‘we wouldn’t recommend radiotherapy if we didn’t think it was the best option’ so I’ve decided to proceed with the radiotherapy for the sake of my family. It starts the end of this month so watch this space. (I’m feeling very sorry for myself but at least I haven’t had to have chemo).

Hi again Jayess, my only symptom when I was diagnosed was a very very slight light pink tinge on the loo paper when I wiped. Could have easily just been vaginal dryness etc. Bounced back quickly from my hysterectomy - was walking 40 mins or so per day by 2 weeks post op. People told me how well I looked to which I replied I looked (and felt) well even when I had cancer. I felt a similar sort of apprehension re radio - felt really stuck as was worried about it making me unwell but was also worried about recurrence. I too feel damned if I did and damned if I didn’t. But I believed in my lovely oncologist, with her common sense objective approach that was also empathetic and supportive - and I found enough courage to move forward. I researched pelvic radiotherapy eating plans and decided to start 2-3 days before my treatment started, including cutting back on starchy carbs. I worked out little tweaks to make treatment work better for me and though the every day travelling back and forth was a slog, it was okay. 

Hi, How are you? How has your treatment been?

I finished Brachytherapy and got more medication for my infection and it appeared to go, although has shown signs of returning a couple of times. I see the oncologist in 2 weeks time and will mention it. I know my immune system is low, and just wondered if there is anything in particular I should be avoiding or doing because of low immunity? I met with a few family members at the weekend and then wondered if I should be doing that kind of thing or not? My tiredness is getting worse too. Is there a point where the tiredness starts to ease? 

I will be asking about follow up care at my appointment with the oncologist too. I had some cancer left behind in 2 areas ( lymph node and vagina) so really hoping they will offer a scan to let me know if those areas are clear after treatment. 

I am sorry that you are not getting a scan. Are you ok with no scan and patient initiated follow up? 

Thanks I’ll check out eating plans. Never considered this. I think the best news I’ve had with the whole experience is don’t lose weight . After treatment is finished and my energy’s back I really have to get some weight off (and keep it off). 

Thank you for this info.

Jayess, this is a link to the info sheet my hospital gave me: Preparation-for-radiotherapy-treatment-to-the-female-pelvis-2093-PIL.pdf. I also switched to white bread, and avoided starchy carbs and skins of fruit and veg including jacket potato skins. Something I made sure I took with me every day was a snack to eat immediately afterwards - usually a banana and a packet of Quavers - before my drive home. And I often had chocolate or ice cream as a treat in the evening and to keep up my calories. 

You must have read my mind! I was searching for some info on eating but didn’t find much. This was extremely helpful.

Hi Angiaqua

Really sorry to hear you’ve been unwell. You’ve been through a lot of treatment, please be gentle with yourself - your body will need time to recover. My pre-op scans showed no sign of spread. However as I was originally staged as 1a, no lymph nodes were checked. Final stage was 1b (in absence of nodal staging).  I only had brachytherapy, which finished 10 days ago and doing ok so far. I’ve had chronic fatigue for a number of years, but was totally wiped out the past year before my diagnosis. I am a bit tired but thankfully more energy than before the op. After finishing the brachy, I’ve now been told I have Lynch Syndrome. Seems that can increase risks from radiotherapy. It would be so helpful to have had that information when deciding about treatment.  I’m also awaiting clarification on something from my pathology report and have a referral to respiratory due to some changes in my lungs that remained on a repeat CT scan. It’s quite a journey this! Every time I try to put it behind me, something else comes up.Will see genetics counsellor in a couple of weeks and will be offered colonoscopy every two years due to increased risk of colorectal cancer. I also have post brachy check-up in Sep. Depending on outcome from those, I’ll consider having regular private gynae checks. 
Determined to keep strong and positive. 
Take care. 

Hi, I did the low fibre diet during radiotherapy too, however it did not help me. The radiography doctor said the low fibre diet does not always work for everyone. One thing that is not mentioned, but my macmillan support worker later mentioned was cutting down on fatty foods. Cutting down on fatty foods made a difference for me. The low fibre diet helps many people and will no doubt help you too, but if it doesn't then you have another option to try. Hope your treatment goes well.