11 MONTHS POST TREATMENT FOR WOMB CANCER

I'm nearly at the end of my 25 radio treatments - exact same diagnosis as yourself but was given 18 weeks chemo before radio (as found in a lymph node).  I'm finding the radio harder than the chemo for a number of reasons.  I woke up with a new stoma after the surgery and this has so far protected me from the bowel reactions you mention but has brought its own issues. I'm suddenly tired all the time - the kind of 'can't be bothered to cross the kitchen to rinse a mug' sort of tired and I'm getting the kind of aches you describe. I know I'm not as far forward in my journey as yourself but I can identify with it - and from what I've been told, I can expect to feel the same when my radio has finished.

Hi,

Sorry I actually forgot to include that they found I have 'LVSI++++'. So it was in my lymph nodes and blood vessels which leaves me with a higher chance of it returning and also because I had Grade 3 cancer that increases my chances also.  I have gotten over thinking every niggle I have is 'cancer', but the shoulder, arm and back pain is making me anxious.  

Hi Peggy

I think you need to contact your CNS and ask to be seen. It maybe that they are able to bring your next check up forwards. 

Firstly to get the chronic fatigue checked out. It may be the medication needs to be looked at. It may also be that they need to look at your diet and see whether this is affecting anything. I also had a bad reaction to radiotherapy and still have issues. During my check ups my diet was monitored and I know for me cutting out certain foods to control symptoms meant that I was likely deficient in some nutrients and that can lead to fatigue. It may also be an idea to ask for a routine blood test to check you haemoglobin levels. Mine were low for sometime- particularly after my chemo and in the end I needed a blood transfusion. The difference it made within a couple of days was remarkable. 

The shoulder. arm and back pain needs checking out. Something is causing it and it may well be muscular however as these are new symptoms and they are bothering you it would be a good idea to contact your CNS. Maybe send an email? The back pain may be due to effects of the treatment- I remember being told to report any pain in the area of the radiotherapy as it is possible to have very tiny fractures where the pelvic bones are weaker. 

I do think this all needs checking out, if only for some reassurance. Do give the Support Line a call if it would help to talk things through first. 

Jane

Hi Jane

Please would you be kind enough to share what foods you cut out and if cutting them out helped what side effects you had.

I am starting radiotherapy tomorrow and my oncologist told me to eat anything I wanted to. 

I understand that I must adhere to my oncologist advice but I read conflicting advice on linewhich says you must take low fibre diet.

I really want to help myself but I don't know what to do for the best. I'm pretty sure my oncologist is not really interested in nutrition and because I have having adaptive tomotherapy, maybe that makes a difference.

However right now I am at confused.com   Best wishes Jackie 

Hi Jackie

I agree it can be conflicting advice when you look on line.

Diet advice for people having radiotherapy to the pelvis area.pdf

This link is a good one. There are links in it to the foods to eat and those to avoid. There are also links to the Macmillan and Cancer Research information.

It is similar to the advice I was given before starting by the radiotherapist. 

For me side effects- mainly diarrhoea and fatigue began from the first 2/3 days. I remember my first review after the first week and being told that whilst some people are lucky in that they have very mild effects, others can be more severely affected. 

Because I was struggling with diarrhoea and nausea they did try various medication to get it under control. In the end it was a combination of 4 different medications plus a blood transfusion that meant I could complete the treatment. 

I did have chemo before radiotherapy and whilst it had an impact on fatigue I was told that the tummy effects were from the radiotherapy. Travelling to and from the appointments plus the anxiety around them, I feel contributed to the fatigue. 

Dietary wise, I followed my normal diet for the first few days- just lower fibre and avoiding caffeine and carbonated drinks. When the diarrhoea started, that combined with the nausea I was eating very plain foods- white toast, crumpets, rice crispies etc. Plain rice. I also had complan drinks. My diet was very restricted but this was due to the symptoms and it was under medical advice. Fluid intake is really important if you do have any diarrhoea. Tea was decaf. I drank water mainly. Weak squash. After radiotherapy ended I slowly began reintroducing foods. After treatment ended I went on to 12 weekly check ups and continued to get dietary advice. 

I am now over 3 years post treatment- I still watch what I eat but can eat most things that I want to. I am still careful with dairy and fibre. 

However, many people only have some milder effects so it may be a case of taking things gently and seeing how you are affected. I remember being asked each day, how I was and did I have any side effects. One thing that did help me was that I would see the same bunch of people each day- I am not sure if they had the pelvic patients in at the same time but there were several ladies having the same treatment plus quite a few men who were having it for prostate cancer. 

Diarrhoea, tiredness and drinking lots of water were the common themes. 

Good Luck

Jane

Hi Jackie

I would wait to see if you are affected first. Having said that I suffered terribly with diarrhoea when having radiotherapy. My CNS gave me loperamide and I changed my diet, it became very beige and I cut out most fibre. I did have the complication of taking diabetes meds which can also affect my stomach. 

The diarrhoea did lessen after a while but I still get it now and again, my GP has since put loperamide on my repeat prescription. I have the benefit of having a GP daughter in law who was extremely helpful while I had my treatment, giving me advice too.

Good luck with the radiotherapy. 

H 

Hi Jackie

I finished my 25 radiotherapy and luckily I didn't have side effects. My oncologist also told me I didn't need to change my diet because consistency is important. However I did change a bit.

* Breakfast, I stopped having cereals but still having lower percentage whole-wheat bread. 

* When the treatments were around lunchtime or in the afternoon then I always had egg omelette (no cheese) for lunch.

*I had biscuits or crackers on the way home.

* Avoiding garlic, onions, chilli, spice food. No baked beans or chickpeas. Still having sweetcorn but reduced the amount .

* Used enema before every treatments. (I had to "beg" for the two shortage enema towards the end.)

* I put moisturiser on but wiped away before the treatment time.

Good luck for your treatments.

Thank you for telling me about your experience. I'm grateful to hear from everyone. I will wait to see what my outcome is with my fingers crossed

Hi, Good luck with the radiotherapy.

I started radiotherapy today too. I was also advised to keep to the same diet and not change anything drastic.  I decided to follow the advise but made some small changes this past couple of weeks such as moving to decaf coffee, cornflakes and white bread. 

Now I guess we wait and see what effects I get and change my diet accordingly.