PRD after IMRT?

[Rainylake]

Has anyone here developed PRD after intensity-modulated RT given in the last few years? I am wondering if the incidence is truly sharply lower with the more refined RT of recent use

[D_Cymro]

Hi. I had a related form of RT called VMAT in mid-2019 and have experienced mild to moderate bowel issues, together with a more sensitive urinary system. I have more urgency and frequency than I had, though thankfully hardly any diarrhoea, and as far as my bladder is concerned, I tend to have a fast 'ramping up' from being fairly comfortable to desperate at times, I can hold less than before treatment on the whole, and I have an annoying burning sensation when I don't drink enough fluids - particularly at night, which can be a real pain as it disturbs my sleep. How are you?

[Rainylake in reply to D_Cymro]

Thanks for your reply. I am 17 treatments of 28 in, and am experiencing more urinary urgency and frequency, and some stomach cramping. I wish I knew exactly how much the radiation will improve my chances of nonrecurrence over chemo alone...the recent GOG258 study published in the NEJM found chemo alone as effective as chemoradiation. medpagetoday.com/hematology...

[endo3]

What a good question. I would also like to know how long after treatment PRD do people generally experience issues . I finished IMRT in October. I’ve had a couple small bouts I believe related to Rad, but really am fine. I’v always assumed PRD is something that kicks in down the line. What have others experiences been?

[D_Cymro in reply to endo3]

Hi. I actually spoke to my ex-clinical nurse specialist earlier in the week, mainly because I'm a bit of a geek and wanted to know what radiation doses my various bits have had (before I retired I worked in radiation safely). She was under the impression that 'these days' you wouldn't expect side-effects to get much worse after about a year after treatment. I found this to be reassuring, as I had understood that effects could worsen many years after treatment. Anyway, I'm trying to speak with a urologist/radiologist to clarify that. It may well be that what's written in the leaflets, etc, is a bit out of date compared to what they're now seeing. I certainly hope so.

[endo3 in reply to D_Cymro]

Thanks for your reply. I’m a bit of a geek too. Your clinical nurse’s response is a little bit reassuring. I too would like to know current research/ data also although experiences seem to be so variable.I am sorry to hear Ladyparts that you have had issues. I hope you are being given good support and help.

[D_Cymro in reply to endo3]

I've just read your post again. What happens to us after treatment is complicated. The effects of the treatment itself are expected to die down within a few months, but then the longer term effects can then kick in. Sometimes it can be difficult to know which one we're dealing with. When I look back on my experience I think I had a few months between the two, but as I wasn't paying attention to my symptoms on a day by day basis I now find it difficult to remember precisely.

[Ladyparts]

I'd like to know this too as I had pelvic IMRT around the same time as you and have had lots of issues since.

[Rainylake in reply to Ladyparts]

What issues have you had?

[Ladyparts in reply to Rainylake]

Sorry I missed your reply and question! I've had a bit of a smorgasbord of various aches and pains in the pelvis over about 1.5 years. More recently this is presenting itself as rectal pain/discomfort, which my Dr thinks is radiation proctitis. I seem to get randomly constipated with this and one kicks off the other, so I have to stay on top of my fibre intake!

Earlier on I had painful hips and pelvic bones, but that has thankfully subsided. I also had a lot of nerve pain on one side of my pelvis, aching, burning, period like pain, lower back pain - all intermittent and constantly moving location! That seems to have only just started to calm down in the last few months.

I think that everyone is so different when it comes to side effects - it's hard to know what's normal or what to expect. And I really think that our specialists and doctors have very little idea as to the extent of what we go through and for how long. My radiation oncologist said that I could expect to be back to normal 3-6 months after treatment. Um, no! Far from normal! Its been difficult.

[CrochetDancer]

Hi Rainylake,

I have just been diagnosed with Radiation Enteritis which I believe comes under the Pelvic Radiation Disease family.

I had radio and brachy in 2015 which caused extensive damage and I have 2 stomas. I have now been told I will need a third stoma due to the damage. I haven't stopped crying. Plus it was made worse as the consultant wasn’t particularly nice and his nurse kept shouting at me.

Sending love and good vibes,

[RoseTyler]

I had treatment for a rare endo-cervical adenocarcinoma in 2008/09 and it included IMRT and Brachytherapy. My PRD didn't kick off until September of 2018 so it's definitely progressive. :/ It can even kick off years later than that. Prior to 2018, the worst post-treatment issues I had were mild hip pain and very occasional diarrhoea or bowel issues but only if I had caffiene. It's certainly worse nowadays; almost daily diarrhoea, bowel pain/cramping, wind. It's rubbish >:(.

[Memagh]

Hi Rainylake,I had treatment for cervical cancer in November 2019. At about 6 months post treatment I started to suffer with some horrible bowel and stomach discomfort and at 9 months bladder issues kicked in. I have just had my 19 month post treatment scans which showed that I was clear of cancer but I now have pelvic insufficiency fractures to add to my growing list.

A colonoscopy found that I have radiation proctitis and 13cm of damage to my sigmoid colon. A cystoscopy found extensive damage to my bladder.

For a treatment that is meant to be so targeted now, this is a lot of damage. I was so worried before I started treatment about long term damage and had a long conversation with my oncologist and clinical nurse specialist at the same time. They told me it was only a very small amount of people that would have long term damage to either following treatment and pelvic insufficiency fractures were never mentioned.

To try and deal with the bowel issues I mostly follow a low fodmap diet (ibs diet). This improved things massively for me but my diet is very restricted. I can eat a whole pizza but fresh lettuce, peppers, cucumbers, onions, garlic, peas, sweetcorn mushrooms or most fruits will set off an ibs type attack. I have blood in stools most of the time. I suffer with radiation cystitis because of the bladder issues and can suffer with some heavy bleeds from the bladder when it is irritated. Dehydration is very bad for this.

As I have just found out about the fractures, I have not spoken to my GP yet about what I need to do to prevent this progressing. So in answer to your question, for me, so called targeted radiotherapy has left me with lots of damage. My cancer was staged at 1b2 and I received 25 radiotherapy, 5 chemo and 4 brachytherapy.

x Maria

[AT73]

I had my radiotherapy treatment in 1991 after having ovarian and endometrial cancer. All I was told at the time was that there would be certain foods that would disagree with me! Spinach turned out to be one of those! I ate fairly normally for many years and experienced very few symptoms. Eight years ago I started to have bowel problems and had a colonoscopy. This showed radiation proctitis, damage to the sigmoid colon and strictures. My symptoms were still quite mild until 3 years later and so another colonoscopy was attempted. It had to be stopped as there was too much narrowing. I was told that I had an impacted bowel and nothing could be done. At this point, I discovered the PRDA and was recommended a specialist consultant in London. I had started to have very bad ‘flare-ups’ and was told by my GP that this was probably Diverticulitis. My consultant did all the usual tests and confirmed that I had PRD. I had also started to lose weight as so many foods seemed to disagree with me. I was prescribed Laxido. As the flare-ups worsened and became more frequent, I found it increasingly difficult to make the journey up to London for appointments. I was eating very little for fear of bringing on an attack. These would make me so weak that I would pass out. I had stomach pain, nausea and reflux, sometimes lasting for days. I was then diagnosed with malnutrition and and a form of anorexia and told I may have to be tube fed. Fortunately, I found a hospital nearer home with an Intestinal Failure Unit and eventually managed to get a referral. I see a consultant and a dietician there and have managed to put on weight and eat a more varied diet, although it is still VERY restricted. I also take supplements and iron daily. It is now 30 years since my radiotherapy treatment. I think it has come a long way since then and is not nearly as invasive now.