Hi All
I’ve just joined today. I was diagnosed with 1B1 back in August after a LETZ treatment How common is PRD?
About 22,000 people are treated with pelvic radiotherapy each year . The Pelvic Radiation Disease Association (PRDA) estimates that at least 100,000 people in the UK currently experience ongoing effects after their treatment .
We surveyed more than 600 members of our community who have had treatment for cervical cancer and found that:
over 8 in 10 (88%) experienced at least 1 long-term symptom
over 6 in 10 (63%) experienced at least 3 long-term symptoms
over 2 in 10 (24%) experienced at least 6 long-term symptoms .
So it’s fair to say that long-term symptoms, including symptoms of PRD, are common after cervical cancer, although how much it can affect you varies.
It can be difficult to get a PRD diagnosis, so it is possible that more people have PRD that we don’t know about – and they may not know it themselves.and after CT and MRI (nothing further found)
I’m not sure why you’ve titled this ‘preventative radiotherapy’. Those of us who have received radiotherapy for cervical cancer have done so in order to cure us/ destroy the cancer, not as a preventative. Have you been offered optional radiotherapy as a preventative backup, or something like that? If so, what is the rational for this?
Probably most of us will have PRD over time, but as I see it the alternative would have meant a slow death from cancer, and I for one am okay with living with some faecal incontinence to have a chance of life. I may develop other symptoms in time - I don’t know, but I’d rather be alive. X
Thank you for responding. Maybe preventative is wrong word. It was put to me as a “tidying up” exercise. They removed tumour and surrounding lymph nodes but due to LVSI being found on the removed tissue it puts me in intermediate risk category for cancer returning. I was told 20% risk and that radiotherapy would reduce that to 10%. I think it’s that which I am battling with.
It terrifies me and I have compromised kidneys.
I also realise the post I put on was not what I meant to send. It was first time using the forum and I didn’t mean to insert the info on PRD!!
Ah - I see. I think this is an area of very great uncertainty, and I would be personally cautious. The change to risk is not very great, is it - although it’s technically halved, this is not to say that your cancer would continue growing. The question is, are they saying they think they may not have removed all the cancer - and want a course of radiotherapy to be sure of destroying it - or are they saying they removed it, but there is a 20% possibility it may return? The two things are very different.
One thing to bear in mind is that you can only have one course of radiotherapy, because of PRD - this COULD mean that in the future you would not be able to have another full course of radiotherapy if you had a recurrence of cancer. It might be an idea to ‘ask an expert’ on the helpline page of the main forum - or even ring someone for a chat. It might mean you have a little more information before you go back to your gynaecologist. You need to be sure that whatever is done, you are happy with this and it’s the right course of action for you. I hope you can get some clear answers and enough information to make an informed decision. If you don’t have the radiotherapy you will need to be monitored closely - and should be in any case after what you have been through. X
I was in a fairly similar situation; informed I had LVSI, PNI and a close margin following a radical hysterectomy. However unlike you I was positively advised to have chemo-radiotherapy which I very reluctantly agreed to.
A couple or so years later I was complaining to my surgeon about my various side effects (see below) and he said that, at the time, my case was hotly debated at the MDT - he felt he had got all my cancer out but it seems the chemo-radiotherapy team won the argument. Who was right? we’ll never know.
In terms of the figures that the PRDA give out I guess that includes those who had radiotherapy years ago when the treatment wasn’t targeted in the way it is now. Targeted radiotherapy should result in less side effects; I had targeted treatment in 2017
In terms of my side effects; my absolute worst one is lymphoedema which restricts a lot of my activities and in my case is very onerous to manage. Radiotherapy increases the risk of lymphoedema, over and above having lymph nodes surgically removed, because it damages lymph vessels and any remaining lymph nodes. That said, most people don’t get lymphoedema or if they do it can be fairly mild and may be easily managed.
In terms of my other side effects I do have some bowel issues; a bit of incontinence and bleeding plus occasional flare ups where I’m not happy to be too far from a loo. Bladder wise I don’t think the radio has had much effect although it may have exacerabted my urinary retention which was caused by my surgery. The radio has had quite a profound effect on my vagina - it’s very narrow and short (bearing in mind the top half of my vagina was removed during my surgery) ! I decided I didn’t want to use dilators any more and I’m not bothered about sex so for me it’s not a major issue - I’m in my mid 60s.
I do sometimes wonder if I wished I hadn’t had radiotherapy and taken my chances? But then I haven’t experienced that situation so I can’t give a balanced opinion.
As I say, yours is a tricky dilemma. Everyone’s different how our bodies cope with the treatment; there’s no way of knowing until it’s done. The best you can do is give it your best shot in terms of making a decision,
Oh my goodness that must have been tough! The worse part is I was led to believe by a doctor the day after surgery that he understood no evidence of cancer was seen and they thought the Letz must have removed everything. Therefore I was very shocked to be told 5 weeks later that radiotherapy was suggested. Because of LVSI found they can’t be 100% sure nothing got left behind as it wasn’t clear to naked eye, therefore radiotherapy suggested to destroy anything possibly remaining. Still confused as to the 20% risk but I guess 10% risk (after treatment) is better! I’m 53 and single and nervous about quality of life.
I completely understand your concerns about radiotherapy. It does (potentially) come with horrible side effects, but most of them are manageable.
I’ve had 28 fractions of ERBT, 22 fractions of IMRT, 5 sessions of brachytherapy, and 5 fractions of Stereotactic radiotherapy (cyber knife) in the past two years - and as my oncologist said during my last consultation, I’ve had it all now!
My side effects include:
Lymphedema in my left leg and mons pubis. Manageable with compression garments and regular lymph drainage massage.
Vaginal stenosis (shortening and narrowing). I use dilators three times a week and am still able to have intercourse with my hubby.
Peripheral neuropathy - the numbness in my left leg and foot makes sports difficult (I was very active prior to treatment), but I can still cycle and walk.
Weak bladder - I manage this by not waiting to go to the loo - my urologist has offered to prescribe medication for this if it gets worse.
Damaged ureter - this is going to be my most difficult side effect to manage. My latest recurrence wrapped itself around my ureter (which already has a stent). The stereotactic radiotherapy was aimed right at the ureter, so I’m most likely going to have my kidney removed in spring. I’ve had too much radiation in that area to have any kind of nephrostomy.
During my initial ERBT and brachy treatments, I suffered with dreadful diarrhoea and lost a lot of weight, but recovered very quickly. In the weeks that followed, I did experience some ‘leakage’ in the bottom department - but thankfully, that has resolved itself.
Sorry for the long post. I hope this helps you in some way…
We have a lot of difficult decision to make. I would go down the same route again.
Wow you’ve certainly been through the mill but you sound positive and so strong! Thank you for sharing your story. It’s so hard and I’m still struggling to decide whether to do it. My tumour was very small and no nodes were affected but I had 2 criteria which put me in the intermediate risk category but I’m told cancer doesn’t return in all women. It’s all a gamble isn’t it. Xxx
