Can anyone tell me more about late side effects of radiotherapy?

Hi HIJ75, just wanted to try and reassure you a little. Firstly the fact your Oncologist seems to of done a U turn is perfectly normal following a MDTM! In fact that’s why ‘usually’ they try and do your follow up appointment after they have had their meeting, but sometimes it just doesn’t work out like that! That meeting would of been with a whole group of ‘experts’ sat discussing ‘YOUR’ case! Deciding what is the best treatment for you, to hopefully give you the best chance of a full recovery. Bearing in mind between them they will have years of experience and seem many thousands of patients.

So the outcome was that they believe giving the radiotherapy will reduce the risks of the cancer Recurring in the same breast/scar!

Now because yours was on the left side they have to mention the risks of long term damage to your heart/lungs! Now although they have to give you all this information, to cover their own backs. Radiotherapy has come a long way from how it used to be! When you go for your planning session they will do a scan and will work out how they can treat the area without the heart and lungs being affected. By that I mean those organs won’t be in the direct range of the Radiotherapy beams! Now to do this they sometimes use a Breath holding technique, which I used. Now hopefully this will reassure you. When I went for my initial setup, I got a call a few days later to say they needed to see me again before I started my Rads, because my scan showed my heart and lungs would fall into the Radiated area and they would like to try the breath hold technique to see if they could remove them from the area! This sounds weird, but I think it also shows how precise the set up is and how they will do there best to make sure that they cause as little damage as possible. At the end of the day they want to prevent or at least reduce your chance of a recurrence. They don’t want to cause a bigger issue! 

Of course the final decision is yours! You can choose not to have it and hope that you are one of the lucky ones! Just make sure you feel you have looked at all the information available, chatted to the Radiotherapy Oncologist if that would help, or chat again with your surgeon! Whatever you need to do to make this decision one that you can live with! Because the last thing you want is to live with a life full of “What Ifs”! 

I hope this has helped a little and not confused you even more! Take care Hun. I hope things go well for you, whatever you decide. Sal xxx

Thanks @LondonLass. It's really helpful to have a such a detail reply and to hear your experiences. I do understand how the MDTMs work and that different specialists may have different views. It was just so hard to be asked to make this decision in a short conversation and I wish I had asked more questions. 

HIJ75 don't go into this if you aren't completely sure about you/their decision! Call the hospital ASAP and ask to speak to someone. If you feel you are being forced into it, then you'll never feel happy with their decision and it will be too late to do anything about it afterwards! 

They will totally understand and I am sure someone can answer the questions you now how! You will probably have a radiotherapy planning session coming up. Although you only meet the team doing the Rads at this point, they still might be able to answer some of your questions.  Alternatively BCN or Surgeon/radiotherapy oncologist! Make that call, you could try now although I expect they've gone home for their weekend!

Hope you find the answers to your questions. Sal xxx

Hi, Please look into the 5 rounds of radio as there is no long term study into the side effects - it only goes up to 6 years and you get a higher dose with the 5 rounds in think it was 26g against 40 - 15 doses over 3 weeks - I have refused radiotherapy and chemo. Lumpectomy in March. I have balls though! 

Thank you so much! I spoke to two BCNs today and the administrator in Oncology. All were very understanding about my need for more information and I should be speaker to the oncologist on Monday - she wasn't in today. Meanwhile radiotherapy called me to come in for my planning appointment on Tuesday! Normally, I'm so grateful how quick they are but this feels overwhelming. 

To be honest, I think today was the day it all hit me. I have been really strong through diagnosis, mastectomy, recovery and then today I just cried and cried all day, didn't get out of PJs till 5pm. So thankful to still have my mum, who enticed me out for her home cooking. I don't know how I would get through this without her.

That's it, 26g overall, but in 5 higher doses and very new so no studies ... this seems to be the story with all the RT research. The studies on late effects are all on ladies who had it 10-15 years ago or more, when the techniques were quite different. 

This oncologist clearly has my best interests at heart but is also a bit bossy and school mistressy - much prefer the attitude of my surgeon but this is really the oncologist's area. 

I'm so interested that you refused both ... what made you decide?

I follow the breast cancer conquerer  dr v and dr Leigh conneally a us doctor (the cancer revolution book), it’s is scary getting the result and I felt like I was getting processed through a system. My oncotype.score was lowish and the risks to chemo are high on the long term and I felt the same with radio as there are lots of soft tissue damage. I would also say that my best friend had cancer at 40 and took everything but still came back after 6 years,  I believe that emotional stress was the root of hers and mine (I thought I had a good life but now looking back on it I was drowning in stress (warning to be perfect wife, mother , worker) I have had a lot of hypnotherapy to realise this. Got with your gut whatever it is, you will always have doubts if you do it or not, there is no easy ride! 

I don't think I'd feel comfortable rejecting treatment if it was clearly recommended, though I respect your decision, but my case is borderline, and I am still very torn, with the RT planning appointment already tomorrow! Trying to get hold of the oncologist on the phone today ....

 I found it interesting to imagine myself in the future as suggested in the 'ask a nurse' section here.

Perhaps surprisingly, I found it easy to answer what I would regret more. If the cancer did come back, of course I would be devastated, but I would know why I made the decision to reject the treatment and would accept the consequences. If I accepted the treatment and then was no longer able to practise yoga, swim or hike in the mountains, I honestly just start to cry even imagining it. It's unthinkable for me. I would not be able to forgive myself. . This may seem crazy, as I know the risk of recurrence of the cancer is higher than the risk of lung damage from RT, but I am leaning towards rejecting the treatment ...

Hi, so I was in your position only a few months ago, it is very over whelming indeed, I lost a lot of weight etc, I wasn't always this strong, but when ever I think about chemo etc I see myself being a shell of myself on the inside with a fake smile on the outside, I had no positive feelings about the treatment I was being offered. When you are ready, try to read healing breast cancer naturally by Dr V, it has a great chapter on tests to detect the early signs (even 8 years before cancer occurs), it details blood tests and lots of other ways you can detect it, you really shouldn't be worried about a return there is a lot of information out there but I don't want you overload you. You must be comfortable with your choice, gosh I never went into this thinking I would refuse everything after the operation, I even cut all my hair in  short bob to be chemo ready, but i never felt comfortable putting my life in someone's control. I'm here for you either way x x