Long-term side effects of brachytherapy

Hi Anne

So good to hear you've just had your final 5 year check-up - congratulations. Is so very reassuring to all of us who have just started our journeys. Just 5 months ago I didn't have a clue I had cancer but had my ops, brachy, and will just be starting the quarterly/ six monthly checkups in February.

Can't see my other half resuming marital duties, not with his hip/back/indifference! So I will be using the dilators but thought only necessary for 6 months?

Big hugs, Barb xx

Hi Barb, lovely to hear from you.

Peter Rabbit certainly sounds a bit frightening!

My brachytherapy is due to start in a fortnight at 6 weeks and 2 days after my op. I have three sessions within a week (11, 15, and 18 December) and assume at the first appointment they check out that the vaginal cuff has healed. I wonder whether they would delay any radiation therapy if this is not so?

My gynae consultant said on the day of my op that there should be no sex for 3 months. I'm not sure whether this timeline quite works when it comes to using the dilators at 9 or 10 weeks. I expect I'll learn more soon! Your experience of the dilator does sound uncomfortable, so I do hope you manage to get over the initial bleeds and progress - perhaps plenty of lube is the solution (or part of it).  

Feels like I'm going to have to set up a calendar of appointments to make sure I don't forget to do my pelvic floor exercises three times a day, and use the dilators regularly too - seems like a busy schedule :-)

Hugs, Dx

Hi Anne,

Like yours, my partner is keen to have an active role in my recovery too, so thanks for sharing on how you used dilators for only some of the time, and your experience of brachytherapy. I'm finding some side-effects from my op are now starting to resolve (particularly the nerve pain in my groin/thighs) - this is helping me realise that I don't need to assume everything is going to be disastrous! I do wish my belly button scar would stop hurting though :-)

It's encouraging for me to hear that you've had all the treatment and now had your final 5-year checkup. You must be very happy that the treatment seems to have done the trick. It's such a whirlwind from initial symptoms (in July/August) to now (post-op, awaiting brachytherapy) that it can be hard to take everything in, and make the best decisions. It seems consultants have different approaches to treatment regime, which makes it more confusing - but they all seem to have our interests at heart.

A friend had cataracts in both eyes and had these operated on successfully in her 80s. She never reads the leaflets that come with medications: she said to me years ago that you'd never take any of them if you did! Perhaps I need to heed her advice when it comes to my treatment :-)

All the best,
Dx

Hi D, re your reply to Barb, my gynae consultant also said no sex for 12 weeks after my op. I had an internal examination before my first session of brachy to see if I was healed, which was about 8 weeks after my op, and then my sessions were one session a week for three weeks. My last session was November 3rd, and the oncologist said at that appointment they would be in touch in a months time to talk about dilators. What a nice Xmas gift!  So it would seem that they all have slightly different timescales and as we are all different our treatments are tailored to us.  But I was under the impression that I would be expected to use the dilators for a long time, hence the investment in a buzzy toy!

Hi Dreamweaver I had brachytherapy 3 years ago, and I do have a few long term issues.  I have a small amount of bladder leakage after a wee, usually later in the day and usually only the once after a wee.  Also I have some bowel issues but I did already have Irritable Bowel Syndrome which I've had since I was 21, I'm now 64 and it's definitely been worse since my treatment.  I am agoraphobic so don't often leave the house, but every time I do I take a Loperamide (Imodium) which my GP now prescribes.  There have been times when I am home that if I had been out I wouldn't have got to a toilet in time so taking them gives me a bit of reassurance, although they aren't totally reliable but I have to hope they will be if needed!  My Oncologist offered me further tests but I have decided to wait and see if things get worse as I can manage mostly now seeing as I am home most of the time.

 I would still have had the brachytherapy had I know this would happen as I felt I had to take everything offered as I had LVSI and wanted to reduce my chances of recurrence as much as possible.  I do use dilators although not as much as I used to, I do find I forget these days but try and use them once a week now.  

Hoping all goes well for you.  

Hugs, Lesley xx

Hi Lesley,

Really appreciate you sharing what's happened to your bladder and bowel post-brachy. I will mention my concerns about cystitis and diverticulitis to the oncologist when I go to the first appointment so he's aware. But from everything that's been said by yourself and others it seems best for me to proceed with the brachy.

I was diagnosed Stage 1b Grade 2 LVSI0 with all 14 lymph nodes they removed being clear of cancer. I assume if I'd been LSVI+ then external radiotherapy might have been suggested instead (I'm really not clear on how this is decided).

Bought myself some imodium (including the instant variety) and am fortunate in being able to work from home currently so if I do have diarrhoea at least I'm in easy reach of the loo. I hope your symptoms ease off, and if not, that the further tests the oncologist can offer will help you.

Take care,
Dx 

It’s almost two years since my surgery. I had three sessions of brachytherapy in February 2019. I had problems using the dialator, some discomfort and bleeding. Last November a doctor told me to use them every day! I couldn’t manage that and now it’s a couple of times a week. After removal of lymph nodes I’ve got water retention and am on water tablets but they’re not as effective as at the start despite increasing the dose. My ankles ache and my legs feel huge. The brachytherapy sessions were bearable but I had a huge amount of fatigue afterwards. The nerve pain still bothers me and my pubic area is still numb. Hope yours is trouble free!

Hi Jigsaw,

It does seem as though each oncologist has their own view on which treatment is best for us. Christmas gift of dilators is probably something I'd never thought I'd ever experience :-) How quickly life can change!

All the best,
Dx

Your experience with water retention sounds tough Galanthophile: I hope you manage to get some relief from aching ankles and swollen legs.

I too have some nerve pain in my pubic area and left thigh - this does seem to have eased a bit since the op is now nearly 5 weeks ago. I have been very tired some days but do try and get out and walk as much as I can in the hope this keeps me fit and helps avoid me stiffening up. The weather's not been very encouraging though recently.

Using the dilators doesn't seem like a bundle of fun. Do they really make a difference I wonder?

Take care,
Dx