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Trying to decide whether to have radiotherapy or not - need help!

gaum
Posted by

Hi all,

I had a lumpectomy just over a month ago (still sore) and have a radiotherapy planning session on Monday. Trying to decide whether to go ahead 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.

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, so have to work through the radiotherapy, therefore need some tips on fatigue, best time to have appointments etc. 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.  

It 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 (not really, but I had turned down other types of non-life threatening surgery twice and the psychological support at the hospital was brilliant). 

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 changes were of it returning if it didn't. 

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,

Gaum.

rily
Posted by

Hi Gaum and welcome to the community at this difficult time for you. Could I suggest you post your question in the friendly and active Breast Group. There you will get help and advice from others with knowledge and experience of this. Click the link to get to the group. You may find it easier to copy and paste your above post in the group. Best wishes.

Best wishes to All,   rily.  What is a Community Champion ?
Leolady56
Posted by

hiLeolady56 here

Have a look at the BC Group. The Monthly Radiotherapy Group

But above all tap on my name and read my profile 

It may help your decision

Leolady56 

 What is a Community Champion? How to add to you profile Life is like a boxing match, defeat is declared not when you fall ..... But when you refuse to stand up again ....... So, I get knocked down but I get up again. x

Snowys Mum
Posted by

Hi ,

I had lumpectomy and radiotherapy nearly three years ago. I worked at weekends and was tired at the end of the three weeks, but overall it was no big deal.

I used the R1 and R2 creams and had zero skin damage, and I'm ginger/blonde white as a lily. I accepted the hospital transport to avoid driving and parking.

The three weeks feels like you are in bubble all I did was go to the appointments and do a bit of shopping, really like an imposed rest.

Apart for the tiredness I had no effects certainly no  skin thickening, and don't regret it at all, it may have lessened the risk of return.

Best  wishes for the rest of your treatment xxx

Helen
jimmyjam
Posted by

Hi Gaum

I had radiotherapy a few years ago following a wide local excision.  I was anxious as I have very fair skin and burn quickly in the sun.  I had no problem at all.  I had no soreness and no fatigue.  Hope you get on fine too.

GRANNY59
Posted by

Hi Gaum welcome to this forum.

With a 95% of this not coming back with Radiotherapy that to me is good odds and if was in that position I wouldnt hesitate to take it but I do recognise that we are all different and it has to be an individual choice.

Im afraid I am not brave enough to not take the Radiotherapy as I wanted to give myself every chance of being rid of this beast once and for all. Nobody can ever give us total guarantees as to whether it will come back but we cant think like that we need to focus on the here and now.

If and it is a big if my Cancer comes back it will be down to pure bad luck and not because of anything I did or didnt do . Its a hard decision for you and I can sense that you are frightened and we all are but you have to make this choice for you and be able to stick by  and live with the choice you make whatever that turns out to be nobody else can make this for you unfortunately.

It is difficult to say what the effects might be because we are all different but fatique seems to be the most common feature during and after Radiotherapy but you have to pace yourself then and listen to your body and rest up whenever you can and be kind to yourself.

I hope you reach the decision on this that is right for you and good luck for the rest of any treatment you choose.

Sending you some huge big hugs. xxxxxx

lesleyhelen
Posted by

Hi

I'm guessing that you were ER+ stage 1 (as this sounds a similar treatment plan to myself).  I had my radiotherapy Oct 2017 and I must admit to being more than a little freaked out by the long list of potential side effects.  As mine was the left side and I couldn't have the breathing technique because of losing my elbow in my right in a road accident at 17, theymentioned potential heart problems etc ...

However, the side effects they tell you about are ALL the potential effects and not that you're going to get them. 

I am self employed and I work employed as a book-keeper for the construction industry.  Both jobs are part time, but equate to about 40 - 50 hours per week and neither has sick pay.  I took one day off work as holiday from my employed job after my 8cm WLE (large WLE due to 5.4cm of DCIS as well as IDC).  I personally didn't get any side effects from radio except for a small amount of blistering in the last 3 days which I attribute to putting too much in the way of creams under my breast and it rubbing with the band of my bra.  I am fair skinned and if I don't pencil in eyebrows, I am so fair that I don't have any - (but I have always tanned well, so not that fair skinned if that makes sense). I reduced my self employed hours during radiotherapy, to work a 'full time job' rather than 50 hour week type thing.

I did see ladies with fatigue at radio, but from speaking to them, I am sure they weren't drinking enough. One lady told me she struggled to drink anything more than a couple of cups a tea all day! I drank several pints of water/tea etc and hydration is one of the key factors they suggest to prevent issues.  I put on my creams first thing in the morning, before I left for the 3/4hr journey to radio, straight after and again in the evening.  I also exercised to a dvd for 20 minutes each day.  I went for mine late afternoon after work.  

I personally didn't even think about not going to radiotherapy, but I debated taking the ER+ tablets due to the potential side effects (equally no side effects with these either so I'm glad I just 'did it').   I had my first annual mammogram last month - all clear and apart from the dent caused by the large WLE, I can't see that radiotherapy made any difference to it.  TBH, I'd rather be alive with a dented breast than facing chemotherapy and needing a whole year off work as has been the case for a lady I know who was diagnosed a month after me with HER2+. I almost felt guilty that I had it 'so easy' compared to what she had to go through, poor soul. (but at least she works for the government - 6 months full/6 months half pay).

Make your decision now on what you would  do irrespective of finances and trust the research and the advice of your doctors as to what is best for you.  Supposing as you say, you didn't go and then had to have a year off because it came back? My biggest piece of advice would be drink, drink, drink when you're having radio.  (I had a pint of squash 1st thing, 2 mugs of coffee, 6 mugs of tea (green and normal), half a pint of water - before I went to my appointment.  After, I would have a treat from the cafe of a large vanilla late for the drive back - it made it fun going as I got a treat at the end. 3 - 4 mugs of tea in the evening/ small glass of water. I even drove the 50 mile round trip daily to radio - no problem whatsoever and looked at it as a nice time to chat with other ladies... whether the mental side of it helps, I don't know.  

Hope this helps with your decision.

Best wishes,

Lesley x

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