Can't decide whether to go ahead with radiotherapy or not - help!

Going through breast cancer treatment Radiotherapy
1

Hi all,

 

I had a lumpectomy just over a month ago (still sore) and have a radiotherapy planning session on Monday (16th July). Am still trying to decide whether to go ahead with radiotherapy or not as I didn’t realise until I had my pathology results that it was a choice. They got all the cancer, it hadn’t spread and the BRCA gene tests were negative. I’m trying to imagine how I would feel if I went ahead with it and the cancer came back but I couldn’t have radiotherapy on the same area again, so had to lose the whole breast vs if I didn’t go ahead and the cancer came back - would I be kicking myself?

 

Am mainly concerned about the potential longer-term side effects (heart and lung problems, sore ribs/fractures, change in size, shape, hardness of breast etc.), but would also like to know more about the short-term side effects too - burning, skin discolouration, fatigue etc. I have very fair skin that burns easily, but have been told that’s not necessarily an indicator of what will happen with treatment. 

 

My current situation is that I can’t afford to have time off work and don’t have any statutory sick pay left after surgery, so have to work through the radiotherapy, as I live alone and mine is the only income. My commute to work is about 1 hour 20 mins each way and about 1 hour 10 mins each way to the hospital (work is about 45 mins from hospital) – all on public transport as I work in London. I need some tips on fatigue, best time to have appointments etc. if I go ahead.

 

The decision to go ahead or not might be a no-brainer to most people, but I was phobic about the surgery and had to practically be taken down to anaesthesia kicking and screaming (I had turned down other types of non-life threatening surgery twice, but they couldn’t kill me and this could). 

 

The radiotherapy consultant told me that there was a 95% chance of the cancer not returning if I had radiotherapy, but couldn’t tell me what the chances were of it returning if I didn’t. This seems to differ with all the other percentages I’ve read about on the site.

 

I’d be really grateful if those of you who have been through radiotherapy could tell me a bit about the short and long-term side effects you have experienced and when, whether the cancer came back and when etc. I realise that it’s different for everyone, but it would help me to make the decision.

 

Many thanks – and I wish you well, you are all so brave.

 

Gaum.

2

Hiya, 

 

In my experience Radiotherapy was absolutely fine, I worked right through choosing my appointments late afternoon as I finish work at 3. It takes only a few minutes and after 15 sessions I had nothing worse than a warm pink boob, soon settled down and certainly wasn’t painful just hot. It can be tiring travelling too and from hospital every day for 3-4 weeks but the actual treatment isn’t physically hard and it’s totally painless to have. 

 

I understand your worry about reacurrance and what would happen as you couldn’t have Radiotherapy again that side but I chose to see it as doing all I could to prevent that happening by having the treatment reccomended to me initially , not worrying about what may happen but dealing with what was happening if you see what I mean.

 

Im now 3 years on and have been left with a pretty normal boob, it’s slightly lumpier and a little tender when my granddaughter likes to climb on me but other than that I have no ill effects and there is no problem in day to day life. My ribs were a little tender for a while and would flare up every now and then but again nothing awful and mainly when I was reaching up but I’ve not had this for months now. 

 

Of course it’s your decision but there really is nothing to worry about from the practical side of radiotherapy, I was actually quite underwhelmed by how simple it was and had expected something far more dramatic! 

 

All the best with coming to a decision and if there is anything else you want to know then please just ask Xx Jo 

3

Hi gaum,

 

I am in a similar position to you. Recently I had breast surgery plus one round of chemo which made me so ill, due to underlying health issues, that I declined further treatments.

 

I am concerned that radiation therapy may do more harm than good in my case. Have tried to find more information about not having radiation treatment but have not had much luck. I have heard from other friends would have had no long term effects and those that have ongoing problems.

 

I am having targeted therapy and hormone therapy so wonder whether these are sufficient without radiation.

 

Although I don’t have a history of heart disease, my family do, so that is also a concern. I know that the targetted therapy Herceptin can also cause heart problems, so that is an increased risk.

 

It’s difficult to make decisions with so little information to go on, I spoke to my oncologist today but he could give me no further information and seemed to think me mad for not wanting to go ahead with radiation treatment.

 

From the comments on this forum regarding the effects of the treatment, I am inclined to think it might affect me adversely as I also suffer with long-term back and shoulder problems.

 

Does anyone have personal exprience of not undergoing radiotherapy I wonder?

 

Best wishes

Sue

4

Hi Ladies
Just to share my experience…
I too hated the surgery and was the worse part for me. Chemo was very doable and radiotherapy was not a problem at all. I didn’t have any skin problems and my boob remained the same. My only issue was tiredness afterwards, so I suggest if you want to carry on working, then book an appointment at the end of the day so you can rest in the evening.
Each appointment is very quick and the whole process lasts about 10/15 mins.
My attitude was to throw everything at it… Chemo and rads so that I gave myself every chance of getting rid of it. The downside obviously is that I can’t have rads again on that side, but having been clear for 2 years, I’ll cross that bridge if I need to in the future.
Best wishes
Sue xx

5

I just want to echo what Jo & Sue have said.
For me, rads was all quite straightforward & oddly I almost enjoyed it as I found it interesting & you get to know the team & others in your time slot.
Apart from some redness & minor soreness, it wasn’t uncomfortable & my left boob felt pretty much back to normal after a few weeks.
I did have the sick leave required, so I took it. If I had to have worked, I certainly would have been able to.
Wishing you both well with it all.
ann x

6

Gaum

 

Just wanted to add my experience with rads.

 

I had 20 sessions 15 regular and 5 boosters Dec 2016/Jan 2017.  The worst part of it for me was the travelling back and forward every day for 5 weeks, having my life controlled by this one apt every day.

 

I had no hesitation in accepting having rads as my oncologist described it as the belts and braces of my treatment along with the tamoxifen I am taking for 10 years.

 

Helena xx

7

Gaum

I’m now 4 weeks on from radiotherapy after a lumpectomy then further surgery for node removal from my armpit. I agree r/t was a bit underwhelming. I kept waiting for the scary things to kick in. I only had one day of fatigue and that was a warm day after a bad night’s sleep and probably dehydrated. 30 mins nap soon sorted me out.  The itching (take 1 a day hayfever tablet - brilliant), the warmth - not uncomfortable (aloe vera gel). I did moisturise, but no real deal. Skin and boob are fine now with really slightly darker skin on the treated area, which only I see.
I also quite enjoyed the r/t  and drove myself to/from (60 mile round trip). Friends came a couple of times for company. I felt I was in charge for once and doing something positive. The most likely place for any cancer cells to remain is in the breast/armpit where they carefully aim the rays. You feel nothing.

 

My only side effect is a weak shoulder from holding the awkward position for the 15 mins or so. Keep doing the exercises right through.

Hope this helps. Nothing comes with a guarantee of course
Good luck

:womanwink: