Pelvic Radiotherapy

[cochenmoggy]

I am hoping to find information regarding Pelvic radiotherapy regarding sideeffects and the percentage of males & females who have received radiotherapy and have gone on to experience long term side effects. I am trying to make an informed decision as to whether to decline radiotherapy or to go ahead with it based on statistics. Also I dont know anyone who has gone through pelvic radiotherapy so would love to hear off anyone who has gone through this treatment.

[Julia-25]

There is a Pelvic Radiotherapy site on healthunlocked already,I’ll see if I can point you to it. 😊

[Perido]

The Pelvic Radiation Disease Association (PRDA) has forum on Health Unlocked.

I had pelvic radiotherapy for cervical cancer in 2017, early 60s age-wise. There are various things to bear in mind when reading about the experiences of others.

Everyone is different in how they react to and tolerate treatments both physically and mentally depending on a variety of factors.

Be aware that the latest pelvic radiotherapy treatments are targeted and cause less damage to healthy parts of the body than previously. I'm not sure when targeted treatment came in but I think those who had treatment before it was introduced are more likely to report severe long term side effects.

I had targeted radiotherapy: 25 sessions of external radiotherapy and 2 sessions of internal radiotherapy (brachytherapy). Because my radiotherapy (coupled with chemotherapy) followed a radical hysterectomy my radiation dose was less than if I'd had chemo-radiotherapy as a stand alone treatment, so that should mean my risk of side effects from radiotherapy was reduced. The short term side effects of my radiotherapy were troublesome but the long term effects are not too bad. I still get occasional bleeding from my bowel but it's not too much of a problem. I also have telangiectasia in my bladder wall which means the blood vessels are fragile and prone to bleeding but that hasn't happened yet. Also my vagina has narrowed and shortened and my doctor advised me I should use dilators regularly if I want a penetrative sex life but on the whole having a compromised vagina hasn't troubled me much.

I was advised I had a significant risk for recurrence of cancer if I didn't have radiotherapy. One of my biggest fears was lymphoedema because I knew that radiotherapy would increase my chances of developing it - over and above the existing risk because my pelvic nodes had been surgically removed. If I'd been offered radiotherapy as a precautionary option I believe I would have declined it. Unfortunately it turned out that I was one of the unlucky minority and developed lymphoedema which progressed quite rapidly and for me it has been life changing and debilitating and, generally speaking, NHS lymphoedema services are not very good - postcode lottery.

I hope this helps a bit. There can be many factors to weigh up whether or not to consent to a treatment; I wish you all the best with your decision making. x

[cochenmoggy in reply to Perido]

I too in my 60's but as under 65 classed in the young age range lol. I also have had a full hysterectomy cervix, ovaries, fallopian tubes. Plus I also had a vulvectomy to remove a vulva cancer tumor, it had spread to my left lymphnodes which I thought was a hernia and due to covid GP surgery told (receptionist) only seeing emergency patients and a hernia isn't an emergency so I had had cancer in my lymphnodes over 3 years that was over 10cm so also then had my right lymph nodes removed (no cancer in those), also told that my chance of vulva cancer coming back is great. I too have already developed lymphodemia in both legs and when I read that it can cause lymphodemia was totally dismayed. It's the radiotherapy cystitis which isn't good but fear long term damage to my bladder and bowel, plus the narrowing of my vagina isn't something I would like either. Well as far as I am aware I am not down to receive chemotherapy. Did you have cancer present in both left and right lymphnodes as both my womb cancer and my vulva tumor were both stage 2 until diagnosis of groin lump changed from dermoid cyst to cancer then it went to stage 2 womb stage 3c for the vulva cancer.

[Perido]

My hysterectomy was preceded by a pelvic lymphadenectomy which revealed my lymph nodes were clear. On this basis I was offered a radical hysterectomy with a 90% chance of cure. My post hysterectomy histology revealed LVSI (lymphovascular space invasion), PNI (perineural invasion) and a close margin and I was restaged to 2A1 (stage 1B2 new Figo pre-hysterectomy) whereupon the MDT meeting concluded I had a significant risk for recurrence and advised me to have chemo-radiotherapy.

The chemo part of my treatment involved 6 sessions of Cisplatin and was essentially to enhance the effect of the radio. I didn't have any long term side effects from the chemo.

I'm sorry to hear that the cancer in your lymph nodes was mistaken for a hernia. The collateral damage of Covid doesn't bear thinking about.

It sounds as though there's a strong reason for you to have radiotherapy but I can empathise why you might question going ahead with it. In the end I went along with the recommendation of my medical team despite having various doubts. I also had some hindsight regrets but 5 years on I'm more accepting of my new norm.

You've reminded me about being young at 60y; I was told the same lol.

x

[AskEveTeam]

Hi there, Thank you for your message. The advice already given is very helpful - if you would like to speak to our gynae nurse about pelvic radiotherapy, please do get in touch with us on [e-mail]

Best Wishes,

The Ask Eve Team