Bowel cancer UK

Hello AllyL 

I have been reading this forum for almost five years and I have never seen mention of a survey.  There is a comprehensive page detailing what might happen https://www.macmillan.org.uk/cancer-information-and-support/treatment/types-of-treatment/radiotherapy/pelvic-radiotherapy/late-effects-of-pelvic-radiotherapy but that doesn't take anyone down the path of an actual diagnosis.  So I think a survey is an excellent idea to find out just how many people are struggling and their symptoms (and my apologies to any organisation if this has been done).

I think the biggest problem for anyone suffering from side effects after pelvic radiotherapy is finding out that yes, it had been caused by treatment, establishing what treatment is available and then getting it.  I have gone down many rabbit holes trying to find out, and only the other day discovered clinics that aren't listed on The Pelvic Radiation Disease Society (I have notified them).  I don't mind doing research but only discovered these by using different key-words.

Thank you for raising this - watching with interest.

Have you started your treatment yet?  I have been thinking of you and always wonder how you are getting on.

Irene xx

Afternoon Irene

When my Dad had radiotherapy 28 years ago I assumed the after effects were unique to him. He had throat cancer, the cancer did go into remission for a year, but he was left unable to eat or drink properly.

I really hope this is the start of conversations about the effects and ultimately support and treatment. Just aknowledgement that the effects are real, would be a good start.

Very good news, I am in hospital now waiting to start treatment. Unfortunately imunotherapy is not possible. I was given the option to seek a second opinion, but outside of trials it's just not here. Thought it best to get cracking with Oxipalatin and Taxol. Never thought I would be saying, chemo my new best friend.

Ally xx

Should have said carboplatin not Oxipalatin.

Brain fog before treatment.

 AllyL 

Your Dad had similar effects to a young man I know of (through my daughter).  I don't know if 20-odd years later they would have explained the long-term effects to him, but sadly he can't tell us now.

I sometimes hesitate in posting about my side effects in case I put others off treatment but then I rationalise; these are very real problems and I am in total agreement with you.  If we here on the forum here don't mention them many may think that it is just them, too, and not escalate their need for treatment to the medics.

Chemo is your best friend - please keep us updated in your progress.

Sending a huge hug

Irene xx

Hello Irene

I would encourage everybody in the group to talk about side effects.

Through talking we gain knowledge about the after effects and it makes it more difficult for health professionals to 'fob' us off.

The treatment is very effective and we need it to beat the cancer, but we also need early intervention regarding the side effects.

I think we are programmed to think we should be grateful, the cancer is hopefully gone, so don't complain. It's not moaning and complaining, it's awareness.

Hope you can all get some pain support soon.

Hugs back at you.

Ally xx

Hi Ally and Irene,

Definitely more research required in this area .

 I absolutely understand the reluctance to post about the negative after effects of pelvic radiotherapy as I would never want to put anyone off this treatment which is highly effective.  Knowledge and understanding are key however in knowing how to manage these effects.

Thankfully many don’t have them, but for those who do it can feel like hitting a brick wall depending where you are and what understanding and advice is available.

Thank goodness for this forum and you lovely people for sharing experiences.

xx