Hi
Has anyone had radiotherapy on their abdominal area? My mum has ovarian cancer..... tumour on her para aortic artery and surrounding lymph nodes.
We were wondering what the side effects might be in that area? Does anybody know?
Many thanks
Lisa
Hi Lisa,
So sorry to hear of your Mum's battle.
I survived radiotherapy 9yrs ago on abdominal area, for endo cancer, and treatments may have moved on considerably since then.
Is your Mum seeing or scheduled to see a radiation oncologist, specialising in gynaecology cancers? Talk with the cancer nurses at the hospital and ask as many questions as you need to, I used to write them all down and take two copies and present the list, that way I didn't forget anything and I could write answers on my copy!
Everyone is different and reacts differently to treatment, some get mild symptoms others get them worse, as I understand it.
I received booklets about potential side effects during the treatment... some of which were:
* sun burn like rash (extremely sore, but David Craig's aqueous cream was recommended and helped quite a bit, dove unscented soap was good too),
* nausea,
* lack of appetite,
* upset stomach (can be mild or severe)
* bladder problems
* and towards the end an "EXTREME" tiredness.
There are mid to long term "POSSIBLE" side effects too, lower back (disc) problems, bladder/bowel problems, pelvic floor problems, IBS and even hair thinning/loss (I think that's something like 5% chance, but it can be pretty demoralising when it's a permanent reminder!), 5-10yrs on.
Oh and I have 3 tiny permanent "freckle" tattoo's, to ensure the machine is lined up exactly, for each treatment (but I wouldn't be without those!!).
However, you really have to weigh that up against the likelihood that the cancer can spread and the implications of that.
The above can sound very scary and having lived though many of them and still "coping" with some, it can seem overwhelming at times, but your Mum obviously has a loving daughter and that will be enormous support and strength for her as she goes along this unbelievably scary journey.
One of the really important things I remember being told (my cancer was very early stage so it was a bigger decision in some ways and in hindsight, maybe I should have "risked it", but then again maybe I wouldn't be here to have "hindsight" ), was that you need to be "mentally onboard" with the treatment, for the greatest chance of success! I used to visualise "Pac Men" gobbling up any remaining cancer cells as I lay there "completely still" each day.
Oh also radiotherapy (back then at least) made it much more difficult to operate again - as things become less pliable.
It is an individual decision, as with any treatment.
Some things I wish I'd realised earlier after the op & radiotherapy, was the lack of muscle & skin elasticity, it didn't occur to me how much this would impact posture, strength etc... it was 3-4yrs later that I discovered clinical pilates (physiotherapist run)... I wish I'd known about that straight away, it took 2-3yrs, to get my back stronger, but thank God, it's working... probably a life long commitment - but that's the "price" of surviving the cancer "beast".
Sometimes it's like one of those awful fair ground rides, at the end of it, you are just glad you made it out the other side alive.
I think eventually you start to accept (if sometimes resent) the "new" normal, but it is a second chance at life.
Go well, and be positive for your Mum.
Sam
Hi Sam
Thank you! You have given us lots to think about and I have passed your comments on to my mum. We are much better prepared with this info and will now be able to ask some 'informed' questions.I'm not sure if the radiation doctor is a specialist in gyno cancers but her oncologist did refer her to him.That was a good point really. Great to see you have done so well with your treatments. Thank you again for taking the time to respond. You are wonderful.
Healing hugs to you.
Lisa
Hi Lisa,
I hope everything goes well for your Mum.
I'm pleased to help, I think all "survivors" want our experiences to help others along the journey, which can get bumpy and feel lonely at times, but when you read the blogs you realise, unfortunately, there are so many others on a similar path, all trying to navigate a path, without a great road map!
I hope you and your Mum find enough answers to make an informed and confident decision for a successful treatment path!
Try to think positive - difficult I know, at such a trying and uncertain time.
Take care,
Sam
Hi Lisa,
Thanks! I believe in "Paying it forward"... I had someone who'd been along the cancer journey ...different type of cancer, but still, it was invaluable, to talk with her. I can empathise with your Mum and the journey she is beginning.
I can vividly recall the decision phase, sitting up in a hospital bed as the "recommended treatment plan" was explained, during the 10 -15min consult - I remember too thinking, I have to trust this person, who I've spoken with for perhaps an hour, who has already changed my life, irreversibly, but at the same time (according to the diagnosis), given me a second chance.
There is no "normal" once you have a cancer diagnosis, suddenly it's as if you've been choppered in to a battle zone, given a parachute, but lost the map and have no coordinates. You have a vague idea of a destination called "Survival" but have no idea what "the local customs" of that destination will be... but you just know you NEED to get there!
You meet "experts" in their field, for 15 - 20 mins at a time, you watch their faces and listen to their voices, trying to assess whether you're willing to give your life over to their hands, whilst at the same time, thinking "do I have a life without them?". To them it is their "day job", they've seen the "cancer beast" and go into that battle daily for their patients, so have a certain 'battle hardness", they HAVE to focus on that destination called "Survival", but even they don't have the best map.
Each journey is different, but with a caring GP, good oncologists (who are willing to listen) and a support network of family and friends, your Mum will have the best "survival ration kit".
It's REALLY hard at times to stay positive, but that's what it takes, belief that "I will beat cancer", to stand a chance of reaching "Survival" Land.
It's important to try to find positives in the journey along the way, walks in the park/by the sea, a bunch of daffodils, a pedicure, the simple things in life.
Go well, as "support crew" - you'll need time out too!
S
