what kind of specialist do I need? Likely PRD after pelvic radiotherapy!

[AngieW1966]

finished chemoradiotherapy 7 weeks ago (for vaginal cancer). Developed severe pain in the bowel/rectum, which feels a bit like labour pain/period pain in the back. It’s constant and I’m taking naproxen and paracetamol daily. It’s getting worse and it’s accompanied by an awful shaky, weak feeling whereby my legs go to jelly and I feel very ill and have to lie down. This is also getting worse. Pain doctor thinks it’s either neuropathic or ischaemic pain, likely due to radiation damage. Oncologist said he’d refer me to a gastroenterologist after my MRI mid July (where I’ll find out if the tumour has gone). Is that what I need, a gastroenterologist? Even if it turns out to be neuropathic?

I’m very worried because my whole body is badly deconditioned with widespread muscle loss and weakness, (which started before the cancer, possibly due shielding during the pandemic, my COPD and menopause). Now my limbs look really ugly and saggy and I’m so weak I can barely do anything. Not had any bloods done for a few months, is that something I should ask for? Has annyone else experienced what I’m going through? Any luck with medicines/treatment? Any other tips or advice greatly appreciated. Not sure who or how to ask for help, and feeling very hopeless.

Oh, had an urgent CT scan last week and there was nothing abnormal to explain the pain (no ulcers, no spread of the cancer into the bowel). Not having diarrhoea and going to toilet fairly normally but still feel bunged up and bloated

[Hopeful-one]

Hi AngieI'm sorry to hear you're feeling so ill- I have to say that I wouldn't be worrying about the stuff on PRD yet. You may or may not have it. My experience was that it took months and months for my body to heal from the radiotherapy and chemo, never mind the surgery etc. I believe it's inevitable that it takes time given the bashing the body gets, one day at a time, or even an hour at a time was my motto. I used a lot of visualisation, imagining my body healing several times a day, and when I felt able I did some basic yoga- and I walked, a bit at first, more as time went on. Building up strength and general overall healing. Good home cooked food, no caffeine etc.. You have been through a lot. Your body will tell you what you need.

I'm sure you know that cancer treatment itself and follow up re blood tests scans etc is fairly standardized so I believe you can trust the docs and the system for this for the 5 year post treatment period. Of course you can discuss any specific concerns that arise- like the pain - as you go along and hopefully they will check it out and refer on as appropriate. I found that some initial symptoms disappeared of their own accord over time. Focus on the positive is my advice!

Good luck.

[Sarah_PRDA Partner]

Hi AngieW1966

I just wanted to reiterate what Hopeful-one has said in that these could well be side effects (short term) from treatment rather than long term/late effects (PRD) and it is too early following treatment to know for sure.

The most important thing, which you are already doing, is that you make your healthcare team know of any new symptoms you're experiencing so that they can rule anything out.

Thought there are Late Effects Services in the UK, most clinics would not be able to see you until you are 6 months post-treatment, I appreciate that this can be frustrating.

You may find it helpful to speak to the Radiotherapy team, as they specialise in radiotherapy and its effects. They may also be able to give you advice specific to your circumstances.

Best wishes

Sarah

(community admin)

[AngieW1966 in reply to Sarah_PRDA]

Thanks Sarah, today the runny discharge started again, that along with the worsening severe pain is leading me to believe the treatment hasn’t worked (although we know the tumour did shrink quite a bit during treatment). I’ll ring oncology tomorrow

[Housebound]

Dear AngieW1966

I can empathise with you about the awful side effects like muscle atrophy and degeneration that have followed sessions of radiation. What irks me is that none of the medics gave me any indication of the likely or possible side effects that could follow the radiation. Constipation and bloating are still with me 3 years after my treatments.

However, I would recommend that you keep in touch with your oncologist and enterologist and have regular blood tests etc. I had a succession of colonoscopies and then sigmoidoscopies to counter the regular anal bleeding that had become part of life. The enterologist stated that the wall of my colon was so fragile that he could not really pursue more treatment of that nature. At that point however, he recommended me for hyperbaric treatment. There is a long waiting list for hyperbaric treatment but when I did get a series of treatments the bleeding did start to subside. Apparently the healing effect of the hyperbaric treatment was good but rather than the 30 sessions that I received, I should have had another 20 sessions to complete the healing. Unfortunatly, I am on another waiting list for more treatment.

I can only recommend that you keep pressing the medics for any possible treatments that may assist you and reduce your discomforts.

Kind regards

Housebound

[AngieW1966 in reply to Housebound]

Thankyou. Sadly I’m not a candidate for hyperbaric treatment due to severe COPD. Ended up in hospital yesterday and they said the diverticulosis I have is not what’s causing this pain (but to be on the lookout for it turning into diverticulitis). I’ve stopped taking naproxen because that’s bad for diverticulosis, and instead they’ve given me cocodamol, which brings other problems such as constipation. My oncology nurse is referring me to the late effects clinic and I have another appointment with the pain doctor on Wednesday. Looks like it’s probably neuropathic pain so maybe the amytriptiline needs increasing. Have started some stretches and exercises this morning, following a pelvic physiotherapist on YouTube. Determined to do a bit each day. Just worried how bad this could get

[Blueblue2]

Hi Angie, I just wanted to pop on to your post to say that I went through the same treatment as you for the same cancer. I am almost one year on from finishing my treatment. I would say at this stage, you are still very much in the early healing stage. I found that my symptoms would settle or change between every checkup. Initially my bowel was worse, but after 5 months it had settled much more, however, I am dealing now with other issues. I would say really keep in touch with your oncology nurses - in the early days I would ring them about everything! And they would either ask me to pop in to get checked over or reassure that everything was ok, or pass it further up the line to get things checked. I do hope things have settled down for you a bit now.

[AngieW1966 in reply to Blueblue2]

Thanks for the reply. I just can’t find anyone with this severe pain that’s getting worse. It’s so similar to the cancer pain I had early on. Today the runny discharge started again. So now I’m thinking the cancer has been growing again. It would explain both symptoms. I’ll ring my oncologist tomorrow and see if they can bring my MRI forward (it’s only 19 days away anyway).

[Blueblue2]

Hi Angie, Just wondered how you are? Did you get to speak to your oncologist? x

[AngieW1966 in reply to Blueblue2]

Spoke to the oncology gynae nurse who agreed with consultant to bring MRI forward but radiology dept don’t have any sooner appointments. Spent yesterday morning feeling abandoned and panicking. Pain doctor from a different trust rang me. She explained blood results from the emergency department and said although they hadn’t tested for cancer markers, the other results were somewhat reassuring. She said she’d ring oncologist and try again to bring MRI forward. She said I have an over active gastrocolic reflex and probable nerve damage in her opinion. She’s tweaked my meds. Still spending a lot of the day and night in a lot of pain and still worrying the cancer may have grown (I have a couple of other symptoms too).