Pelvic radiation

Hi and welcome to this corner of the Community.

So sorry to hear about the treatment ‘leftovers’ as I often refer to them. Let look fir anyone with the same experience to come along and help out.

We do have our very supportive Cervical cancer Group as well. There are a number of folks who have been through treatment and hang around to support others so worth a check.

Follow the link I've created above, join the group, then hit ‘start a discussion’ and you are ready to go.

You could then copy and paste the information from this first post into your new discussion or you can just join in with existing ‘Discussions’ by clicking on 'reply'.

((hugs))

Hi Bernie55,

I’m so sorry you are having these terrible problems.  Yes the cancer has gone but the after affects are horrendous  I pray you get ease and relief from the pain and discomfort️

I was diagnosed in Dec 2012 with vaginal cancer, I had no womb, ovaries, cervix, Fallopian tubes for over 20 years and had been on HRT for 20 years, so I stupidly thought I wasn’t gonna get cancer

I suffer from radiation cystitis and radiation proctitis both very painful. By December 2015 I couldn’t pass water and had to be taken to theatre on Christmas Eve for investigation. Both my ureters were fried and I had to have double nephroscomy bags to assist as I had sepsis at this point.   A lovely gift to wake up to on Christmas morning, urine bags strapped to each leg and tubes in my back. Unfortunately they are permanent but they saved my life.    I’m now having trouble with blockages in my bowel, I as admitted to hospital because of this!   It would appear I need surgery to remove a damaged piece of colon which has been affected by the radiotherapy and brachytherapy.  Another bag on the cards for me, a temporary stoma bag.  At the rate I’m going Bernie I’ll be able to open my own bag shop lol.
If I can answer any questions to help you just send me a message.

Sending you hugs and praying your symptoms ease and you get much needed relief.

Carol x

Carol, you my dear are an inspiration, thank you for sharing this with me. Mine was stage 3 cervical cancer, had everything removed.

i naively thought after the 3yr battle, radiotherapy and a few operations that once I was told that the cancer had gone it would be a case of building strength and getting fit again and that’s what I did. At first the UTI’s and bowel problems didn’t show themselves but after a few years it all started and just gets worse year on year.

Good Morning Bertie55,
Wow you have been through the wars.  Yet you keep on going and going.    ️Good on you girl ️  Grab life and live it

I know what you mean, Radiotherapy and Brachytherapy keep on giving and giving unwanted side effects!

Unfortunately we cannot see the ultimate damage our so called curative treatment is doing to other parts of our innards

I had  to have numerous laser surgery to my rectum as it was burnt because of treatment, now it just bleeds.  When part of my vagina was removed I thought great no more bleeding, alas still bleeding and have to have blood and iron transfusions as and when needed. The Cancer Unit here in Belfast is superb and I cannot fault it in any way.  However my bladder, bowel,  and rectum are all fused hence the problems  
Ask to be referred to a urology consultant I see one twice a year.  They arrange for me to have CT or MRI Scan to monitor the ongoing damage, plus it puts me at ease knowing there is no further recurrence of cancer!
Keep in touch and if I can be of any help just send me a friend request.

I wish you pain free days and am sending you big hugs xxxxx
God Bless xx

Hi Bertie55  You posted a little while ago, but I so identify with your PRD.  I'm 12 yrs after anal cancer chemoradiotherapy and have found in the last 5 years its been getting worse.

I've just discovered PRDA.org.uk - a brilliant organisation with weekly online chat and loads of information.  Twitter they are @PRDA_UK Look for #RTLateEffects.

Do take a look - they've helped me enormously.  I've also put a post about this on the Anal Cancer forum 

Hi,

I was admitted to hospital over the weekend with a bowel obstruction caused by scar tissue due to pelvic radiotherapy, a colostomy and an urostomy and surgical scar tissue.

The doctor and nurse told me my blood tests were "very good". My infection marker has come down and my CRP score is very good too. The CT scan showed scar tissue and nothing ominous but I worry that something is wrong other than the scar tissue causing problems.

I have a fistula down below which leaks constantly and has since treatment.

I was wondering if anyone else feels like this? I am constantly scared.

Sending you all love and good vibes, 

Sorry to hear about your challenges LisaCardiff, the post treatment ‘left overs’ makes moving on with life that more challenging, little triggers can start the ‘what if’s?’

I know that my type of cancer is asleep and could awaken n the future but as time has went on (now over 5 years out from treatment) I have developed the ability to rationalise all the aches and pains that I often have.

Yes some hospital stays with Chest Infections, Lung Fungal Infections, the RSV Virus, Pneumonia x 2, Sepsis x 3 and A Fib...... mostly all due to a permanently reduced immune system but ironically lockdown has been great for me as there are less bugs being transmitted so Avery healthy winter.

Hang in there and keep say x

Hi Mike,

Thank you for your reply. I know from your previous posts that you have certainly been through the mill and I admire your positive attitude and thinking.

I worry over every ache and pain and now I worry about the scar tissue and why is it so bad and painful. The doctor told me nothing ominous was on the CT scan which is great, however I still worry. Again my blood tests were very good too which is great as well.

No one tells us about the damage done by pelvic radiation, if we were told then we would be okay.

Sorry to go on.

Sending you love and good vibes 

The treatment ‘left overs’ can at times be difficult to navigate.... and we don’t get a roadmap as to how we get through this and although the NHS is amazing..... the post treatment support is patchy.

I have a few areas of scar tissue including some nerve damage in my neck so it’s taken some time to distinguish between this ‘left over’ and it being something else.

I also have a “fistula down below” as the results of having some Radiotherapy in some very ‘delicate’ areas so I have to continually monitor constipation as this can end up being very ‘messy’ and there is an inherent challenge of not missing a developing bowel problem

((Hugs))

Hi Mike,

I agree the post treatment is patchy. Don't get me wrong the NHS work wonders however I guess they are busy with others who need help.

Yes, the scar tissue is a nightmare. Mine goes from my breast bone to pubic bone and the area which causes the obstruction and pain is at waist level where I bend.

My fistula leaks all of the time and I wear pads. This happened due to radiotherapy and internal radiotherapy. I am not moaning, like I said I worry a lot. I guess after all we have been through we do.

Thinking about