Radiation damage

[Sis1234]

I am seeking advice from those suffering and living with the effects of radiation damage following treatment. A family member who is now cancer free for 3+ years is living with side effects resulting from radiation damage. It would be great to see how others are managing. She has lost her bowel and is successfully managing this well for a couple of years and it has not impacted on her quality of life. However over the last few months she has developed further complications to which the doctors say nothing can be done. Thank you for any advice 🙏

[candyapplegrey]

So sorry to hear about this. I have had radiation twice, second time it was targeted. Possibly the first time too. Have not had too many problems because of it so don't know what to suggest. What are the further complications?

I don't think it's good enough to say nothing can be done. Has she thought about asking for a second opinion? You/she could also try the Macmillan or Ovacome phone line for advice.

Give her my best and a hug from me. Sorry I cannot offer more.

xx

[Sis1234 in reply to candyapplegrey]

Thank you so much for your reply. She has a fistula causing all sorts of body fluids to constantly pour out of her. But the internal linings are too thin or weak for surgery and so there is nothing they can do. The last doctor said “we just can’t leave you like this” but following the latest mri he could not see any way of helping. It was fine when it was just urine but sometimes there is boood and feces also. The risk of infection is huge. 😢

[candyapplegrey in reply to Sis1234]

That sounds terrible. Can she ask to see a specialist? A friend of mine was left with multiple problems as a result of a simple hysteroscopy that ruined her life. She had so many operations with everything getting worse all the time. I will pray for your relative.

What kind of radiation did she have? Have the radiotherapy seen anything like it before?

Have you heard of Prof Christina? She is the surgeon everyone recommends but more surgery sounds like too much of a risk.

Thinking of you both xx

[Sis1234 in reply to candyapplegrey]

Thank you for replying, I have advised her to ask for a specialist in radiation complications. I’m sorry I don’t know what type of radiation she has.

[Clair266]

Because I had an allergic reaction to chemotherapy I have been assigned to a medical oncologist. I have not had any treatment for 8 months but my most previous CT scan has indicated that one of my nodules is dormant but the other is growing. My medical oncologist is recommending targeted radiation but after reading your comments I am hesitant to proceed. Has anyone had positive results from targeted radiation?

[JOY202452 in reply to Clair266]

Hi Clair266.

Each persons case is unique, age, fitness, stage of disease etc. Radiation can cause damage but there are millions whose lives have been saved.

I read the side effects of surgery, chemo and probably the same as others, absolutely terrified. I had surgery, after 7 days felt okay.I’ve had 4/6 sessions of chemo and fine and I nearly did not go in to centre for chemo on the first day.

[Clair266 in reply to JOY202452]

Thank you JOY202452

[Sis1234 in reply to Clair266]

Oh please don’t misunderstand. The radiation treatment (I’m sorry don’t know what type) absolutely saved her life and she has had many years now she wouldn’t otherwise have had. I was only seeking advice and do not want to scare anyone at an already scary time! She is not a healthy person… no exercise, smoking, alcohol so please everybody is different with their own.

[candyapplegrey in reply to Clair266]

I've had targeted radiation twice. Once on my navel (no sfx worked fine) then next on my liver. Waiting scan for result.

[Tiny_dancer in reply to Clair266]

I had 25 radiotherapy session over 5 weeks on a lymph node and an area at the base of my spine and found it much easier than chemo. It was very effective on the targeted areas but sadly cancer had time to grow else where. I had no obvious side effects and I am 100% glad I chose to go for it. That said a lady I know who had treatment around the same time has had awful life changing side effects but she has been clear of cancer for 3 years. I think none of us including the professionals can confidently say how anyone will respond. You need to know the risks and what could happen and make that decision for yourself. Good luck x