Adjuvant pelvic radiotherapy - side effects

Hi Kamuka1e94e2 

it can be difficult to make decisions when you’re faced with a choice to go ahead with a particular course of treatment. 

Most ladies in the group who have had radiotherapy have had EBRT (external beam radiotherapy) and I haven’t seen VMAT radiotherapy specifically mentioned here before. As it is a very targeted type of radiotherapy, there may be less potential side effects, but if someone has had this specifically, then they may come along and share their experience.

Speaking from my own experience of actually having had a recurrence, and knowing how difficult that made things for me, I would personally want to take any further treatment which reduced that risk, especially when cells have been found in a sentinel node. My cancer recurred when cells were still there after treatment but were too small to be seen on a scan. There is never a guarantee that every single cell has been removed by treatment, whether by surgery or other treatment, and I did not have cancer cells in any nodes that could be seen, but it still grew again.

Side effects from pelvic radiotherapy don’t happen for everyone, but may typically affect the bladder and bowel. My side effects kicked in when I was 3 weeks into treatment, and involved radiation cystitis and diarrhoea. I was given cream and tablets to help with these and they all disappeared soon after treatment ended. Everything went completely back to normal and I had no long term effects at all. I did feel very tired as the treatment went on, but again this was a short term effect.

Treatment itself is short for each session and painless. It took me much longer to actually travel to the hospital and get set up on the table than it did to have radiotherapy itself. 

It’s a personal decision to go ahead when adjuvant treatment is offered, but cancer can be a sneaky beast, and being present in the nodes does give an extra risk, even when it’s small, of spreading through the lymphatic system. You may feel happy to live with that risk and decline further treatment, but the MDT is recommending it to further reduce the chances of it happening because it can be harder to treat once that’s occurred. 

Hopefully you can come to a decision you’re happy with, and it will be the right one for you in your own particular circumstances, 

Sarah xx

Hi Sarah,

Thank you so much for taking the time to reply and for sharing your experience so openly. I also wanted to say thank you for how consistently you respond to people in this forum; it genuinely helps to know that no one is left without a reply, especially when we are all feeling so vulnerable. 

I completely understand and agree with what you are saying. The node has been removed, and what remains is a bit of a grey area, partly because the medical community itself is divided and there is no clear consensus on whether ITCs should always be treated or not when there are no other risk factors. At my hospital, they are being conservative by offering adjuvant radiotherapy, and I do understand the rationale behind that.

My instinct, like yours, is also to reduce the risk as much as possible, and that is why I’m leaning towards going ahead. At the same time, I am finding it emotionally difficult because I am still dealing with side effects from the surgery, particularly with my bowel and bladder. I actually had bowel issues even before my cancer diagnosis and was in the process of being investigated for possible IBS when everything was put on hold because of the cancer. I am very afraid of damaging my bowel in the long term if I go through radiotherapy.

On top of that, I had my ovaries removed, and the sudden lack of oestrogen seems to be affecting my bladder and bowel as well. I have discussed this with my menopause specialist, and she thinks this could be contributing to why my recovery feels slow and why I am still struggling to find a balance. I am having to adapt my diet quite a lot because foods I used to tolerate well now cause problems, and it has been quite overwhelming.

So I think that is where the fear comes from. The feeling of ‘I don’t know how I’m going to get through another five weeks of treatment’ when I do not yet feel back on my feet from the last one. It’s not so much doubt about the recommendation, but the worry about my body coping with more.

Thank you again for sharing your experience and for your kindness. Hearing from someone who has been through so much, and come out the other side without long-term effects, really does help.

I hope more ladies come forward to share their experience with radiotherapy too.

Sending you my best wishes,

Carmen xx

Morning Carmen

I hope that others will post-it may be that you have specifically asked for experience with VMAT radiotherapy and ladies in the group don’t have specific experience of that type of treatment. But they will have lots of experience of going through EBRT generally and the side effects that can (but not necessarily) produce. 

The majority of us with a cancer which couldn’t be treated by a hysterectomy due to the staging have had concurrent chemo and radiation treatment rather than radiotherapy alone, but their experiences of radiotherapy could still be valuable for you to read.

You seem to have a very good understanding of your current situation and where your concerns are coming from. Although I didn’t have long term effects on my bladder and bowel after my treatment, I can imagine these must be difficult to manage and you would naturally worry about these becoming worse because of radiotherapy. However, there are no posts in this group specifically about VMAT radiotherapy which is a more targeted type of treatment (I have done a search for this).

No-one, not even the medical staff, can predict how you might react to radiotherapy in the short or long term, so you are going to have to make your decision without that knowledge. 

If you decide not to go ahead with radiotherapy, then you would still have that treatment potentially available to you in the future. Radiotherapy is usually one course of a number of sessions which cannot be repeated on the same area a second time.

If you were unlucky enough to have a recurrence in the future, radiotherapy could still be an option if you decline it at this point, so that’s a consideration. But, as I know personally, a recurrence can happen with zero symptoms. Mine was too small to see on a scan, I had no pain or bleeding which I was told to look out for-there was nothing to alert me. Once it was able to be detected, it spread very quickly within my pelvis, even without lymph node involvement.

There are many ladies in the group who have not had a recurrence at all to date, so would probably feel differently to me about undergoing a treatment which is a choice. When you’ve gone through a recurrence, it’s no longer a hypothetical situation and mine was more devastating and scary than my original diagnosis.

I would have done anything suggested to me to try to avoid it, but I appreciate that I am speaking with the benefit of hindsight, having lost my bladder and bowel and a lot more besides, on the basis of a recurrence that measured less than a centimetre when it could finally be detected.

You are in a very difficult position here, which I don’t envy. I followed the recommendations from my MDT meetings but of course that was my choice, and you too have that choice. My choice was more stark-undergo a total pelvic exenteration or try palliative chemotherapy. I thought I was very adverse to risk taking until I discovered I wasn’t! I went through 32 sessions of radiotherapy, but would have done that all over again to avoid what I had to go through.

Sarah xx

Morning Sarah,

Thank you for your message.

All things considered, I feel very fortunate that I have been offered VMAT radiotherapy. Even though I have to travel an hour and a half each day to get to the hospital for treatment, I believe it’s completely worth the effort

I have changed the title of the post to see if that encourages more people to share their experience with radiotherapy.

I will follow up by sharing my own experience here, so it can serve as a reference for others in a similar situation.

All the best,

Carmen

Hi carmen , I didn’t reply at first because I know nothing about the vmat radiotherapy . I was diagnosed in Nov 2024 I couldn’t have surgery as mine had spread into the top of my vsgina . I was fortunate enough to be offered the induction regime which is 6 weeks of 2 different chemo administered weekly for 6 weeks . I the went straight on to have the chemo radiotherapy . I had 28 doses of external radiotherapy which was 5 times a week and then the chemo once a week with it . It went relatively well but had t have a few blood transfusions as my bloods didn’t cope well with chemo . I did it on public transport about 1 hr and 15 mins each way . I have always suffered from cystitis and uti and was dreading radio as I heard it can cause cystitis or aggravate it . I can honestly say it didn’t cause me to have any bladder problems , a blessing . As for the bowel I didn’t really get a lot of diarrhoea ( they give you meds just incase ) at the time but I did get a lot of wind ! Which I took meds for and prepared people about ! . I then went on to have brachytherapy and even that was no worse considering it’s internal . The only thing I suffer from is since treatment stopped is a lot of mucus from my bowel , I just wore pads as it caused a few accidents . I spoke about this to my oncologist and it’s prob the bowel being inflamed etc . I feel lucky that I was advised to have the induction chemo prior to chemo radiotherapy and I would of had what ever they advised me to have if it meant less chance of it returning . I have my mri and scans in feb and I pray that they come back clear . I know this is not the same treatment plan as yours but I hope it helps you to get some understanding of it all . If you need any questions answered please feel free to ask.i wish you all the best for your treatment . Take care val x 

I received VMAT radiation for my uterine cancer last spring.  I received 25 doses of it, finishing in early May.  My Radiation Oncologist told me that she targeted my pelvic lymph nodes.  I did fairly well with the treatments and drove myself to them.  I only had a little bit of diarrhea when I ate higher fibre foods.  I took daily prebiotics both before and after treatment.

I started having pains in the lower left part of my abdomen in December. It migrated to the middle part of my abdomen this month.  I had a clear CT scan in late October.  My family doctor thinks I may have IBS while the internist I saw yesterday thinks I have scarring from the surgery and/or the radiation that is impacting my bowels.  I am waiting for an appointment with a Gastroenterologist in late February.  I am trying to follow a low FODMAP diet and am avoiding wheat, onions and garlic.  It is helping a bit.   Hot peppermint tea is quite soothing for me.  I guess I did not get off as easy as I thought I did.  Apparently pelvic radiation can cause a form of IBS, SIGH.