Long-term side effects of brachytherapy

Hi Dreamweaver, I so know where you are coming from! I had the full works ( TLH BSO) keyhole op at the end of August and was diagnosed as grade 1 stage 1b. My consultant advised me to have brachytherapy to reduce my chances of recurrence from about 15% to about 7%. He said it was optional, and some ladies decide not to have it..  At first I thought it was a no brainer and agreed immediately, but then I started to read about it and started to worry myself sick. I am a fit and healthy 69 year old, apart from having cancer! What if I got long term damage ? I was trying to weigh up the pros and cons and just couldn’t decide. I actually experienced my first ever panic attack with the worry of it all.

Anyway, I went to the meeting with the oncologist. He was very reassuring, saying most people do not get major side effects, altho it is a high dose of radiation it’s for short bursts and only a few treatments needed. Most major side effects come from external radiation treatment as they can’t target the area so precisely. Also, he said that if you don’t have brachytherapy and then get a recurrence you have to have higher doses etc. so he recommended it as a belt and braces treatment. I decided to go ahead. I had three sessions and I’ve been fine! 

As for your sex life....well mines getting back to normal now after a few dodgy attempts, lol. (Also followed Barbs advice and bought a vibrator and a bucket of lube.  Have to say tho it’s very scary looking!)   They said they would give me the dilators talk in a few weeks time, but I think if you are still sexually active it might not be a problem.  Good luck with your decision, it loomed large for me but I felt so relieved when I decided to just do it.

Viv

Hi Dreamweaver, 

I have no experience of brachytherapy, only that the ladies on here don't seem particularly troubled by it. My husband had external radiotherapy on his neck, and that was rough, but worth it in the end as he is still around 13 years later.

I have experience of cystitis. Before I had children I was plagued by it. After my first child, some 40 years ago now, I never had it again! Whether she stretched things, I don't know, but maybe more room in there might help you now!! 

It's really like an MOT, isn't it? They found out my thyroid was busily multiplying down the back of my throat (most happen at the front (goitre). When I saw the thyroid people they weren't too concerned, and said they had seen worse. I just regard it all as being fixed up for another 10 years, or so!!

Good luck xxxx  

Hi Dreamweaver I had salvage brachytherapy which is a high dose because I Recurred at 6 months. I have been diagnosed with radiation proctitis so I have ongoing bowel and wind issues. I have had treatment and it is manageable. If I needed radiation as an adjuvant treatment which is a lower dose and lower risk of after effects I would take that treatment rather than what I have now. On a positive I'm 15 month in remission. However this is your call. Wishing you well Dawn

Hi Dreamweaver

I've just completed  4 x sessions of brachytherapy and initially I was terrified of problems it would potentially cause as l have been plagued by bladder infections for as long as l remember. Sex used to cause honeymoon cystitis more often than not. So we gave up penetration. Talking to the nurses made me realise that a recurrence of the cancer would be worse than a bladder infection.

They wanted me to use the dilaters prior to brachytherapy l guess so they knew they'd be able to administer it. So l got an infection before brachytherapy which was sorted with antibiotics. Then l had brachytherapy 4 times, no problems other than tiredness and aching legs on and off. I had 2 weeks off following the last session and then l was instructed to use the dilators twice a day for 6 months and within a week yet another uti. 

However l have to say that despite the frequent infections and how much l resent having to use the dilators l do feel reassured that l have had everything possible to reduce the chance of cancer recurring. Maybe l'm going to go on a low dose of antibiotics as a prophylactic, we'll be discussing that at my next appointment.

Good luck with your treatment.

Hi Viv,

Many thanks for sharing your experience with me - sounds like I'm worrying about all the same issues so am really glad to hear about what your oncologist told you and how you made the decision to proceed with the brachytherapy.

My practical head tells me it's the right thing to do - but I seem to be assuming the worst since I had this cancer diagnosis. I had convinced myself I might die under the anaesthetic but survived fine!

Sounds like there's life to look forward to as well. My partner would be keen to resume our sex life now but he will have to wait a bit longer... :-)

Best,
Dx

Hi NannyAnny,

An MOT - that's a great description! I hadn't realised how unhealthy I was until now - having lost 10 stones back in 2017/2018 and got fit again I thought I was doing OK. But clearly not, under the surface lurks all sorts of hazards! I do hope the gallstones don't cause a problem any time soon :-)

Good news on your husband's radiotherapy outcome, even though the treatment was tough. I've not had children but did have a horrible experience in the States 40 years ago during one bout of cystitis - the doctor there stretched the entrance to my urethra using some sort of equipment (with no anaesthetic). Not sure it made any difference other than bring tears to my eyes and make me reluctant to see any doctor again for treatment for cystitis!
Cheers, Dx

Hi Chickplc,

So sorry to hear about your recurrence and subsequent radiation proctitis, and really appreciate you taking the time to explain to me about salvage radiotherapy and benefits of adjuvant therapy. It's good to know that you're 15 months in remission, and that your bladder and bowel issues are manageable with treatment.

I really do thank you for sharing your experience, and helping me make my decision on brachytherapy next month. This forum is truly full of wonderful women supporting each other!

Wishing you all the best,
Dx

Hi LouEbelle,

Thanks for making me think about what the brachytherapy is aiming to achieve - I had lost sight of that in worrying about cystitis and diarrhoea, and other, worse, outcomes. Your point about feeling reassured about reducing the risk of the cancer recurring is well made, and knowing that treatment for side-effects from the brachytherapy is  fairly straighforward helps me untangle the knots I seem to have let my anxiety weave.

Hope the prophylactic antibiotics do the trick in reducing your infections. I'm not looking forward to the dilators so may resort to the idea of vibrator and bucket of lube suggested above!

All the best,
Dx

Hi Dreamweaver

Still too early to comment on any problems following brachytherapy as it's only 3 weeks since I finished treatment. I did have diarrhoea quite badly for just one day the week after the second treatment, nothing since. No UTI problems.

The situation with the dilators is a bit different. I could start to use them 2 weeks after brachy finished. (Which would have been 10 weeks post hysterectomy)

First use I found a few spots of blood on my undies and as it was a Friday afternoon, had to wait all weekend to call CNS. She did say if I was worried she'd arrange for me to see a gynae person, but as the blood was so slight we've agreed to monitor it as obviously there's still a healing process going on. Tried again yesterday and still a few smears.

That's also using the smallest dilators - I always previously had problems with smear tests due to stenosed cervix. Also not had children and not been sexually active for years hasn't helped. As for my new best friend Peter Rabbit - he's still tucked away in his box - don't think I'll be making his acquaintance for some time yet! - He does look enormous!

I agree, if you're sexually active there shouldn't be a problem. The dilators are to gently stretch the vagina, which, after brachytherapy may have a little scar tissue and also there's likely to be vaginal dryness. I think I recall from the paperwork they're only needed for 6 months - I'll check back on that.

BTW I was given 2 tubes of lube with the dilator pack, didn't have to buy from the chemist!

Hugs to all, Barb xx

Hi Dreamweaver

It's so daunting hearing a list of all the possible side effects and complications from any treatment, isn't it?  It can be enough to put you off unless you focus on the benefits.  I  recently signed a consent form for cataract surgery and after reading a long list of possible snags and disasters, I was reassured that it was one of the safest and most successful procedures you could have!  

I found that any after-effects of RT, and I had both internal and external, were temporary,   and gradually disappeared after a matter of months.  

I have just had my final 5 year checkup.   I had an internal examination at all the previous ones and they never asked about my use of dilators .  I guess they could see  everything was reasonably OK.   Obviously this time it was a phone checkup and I got quite an inquisition on my use of the dilators.   I had to admit that for some time I have rarely used them, as the "natural method" seems to work quite well and has done ever since treatment ended.  My husband was quite keen to have an active role to play in my recovery!  Although I did use the dilators as well for the first year or so, just to prove to myself that I wasn't scared of them. 

All the treatment seems to have done the trick.