Radiation after complete pathological response

You have a difficult decision to make and It's probably abit "damned if you do and damned if you don't". I had my first bc episode back in 2003(47yrs old)  and had a lumpectomy,full node clearance(all clear) followed by radiation.I was fine for 7 years and then bc came back in the same spot.It had grown 3cm within a year- still classed as ebc,oestrogen +ve,hercept-ve Apparently I had an 8%chance of this sort of recurrence despite radiation. It's been over 2yrs now and I am a bit paranoid it might come back on my mastectomy scarline.Because of radiation,I am limited to the type of reconstruction I can have (if I decide later on).I have scarring in the upper lobe of my left  lung as a result of radiation.Whether this is a problem for me,I don't know.However,I had a nasty flu earlier this year and I got asthma.I've never had asthma before in my life- another mystery. Amanda is right when she says that radiation only treats the local area. So,gather our stories,do your research,ask your doctors for stats and then go with your gut feeling-what feels right for you at this present time.Honestly-either decision is a hard one and neither is right or wrong.Good luck.

                                       Tonya xx

Hi Natalie

 

Thanks for your reply. How scary for you! It's awful when you expect one thing and get something else. I was devastated about having chemo too...it seems such a terrible thing to do to your body. I wouldn't even take panadol before I was diagnosed! Now that I have come out the other side of it though I can honestly say it wasn't as bad as I expected. I found I was very focused on the treatment and crossing each one off. I felt OK for a couple of days post treatment, then pretty ordinary and not capable of doing much for 2 or 3 days, then I started to  pick up again and was quite fine for the last 2 weeks before the next dose. Then after surgery I got the great result that it had competely wiped out the cancer. Can't tell you how good that felt! I don't know what the chemo has done to me long term, but I really didn't have a choice. They have a lot of tricks to alleviate chemo side-effects these days, so you don't need to suffer too much.

I really wish you all the best. This is a bugger of a thing, but you will find a lot of strength from the people around you. Good luck!!

Cate  xox

Hi,

 

I can sympathise with how you are feeling. I am 38 have just had a lumpectomy which took out a 9.5cm grade 3 lump and have been told to have chemo. This is absolutely devastating to me. 3 weeks before my operation the lump was 4cm and stage 1 ( says the doctor at the time ). I went in thinking something very minor and the chemo news has me very scared. I seem to hear only of all the bad side effects - hair loss, loss of nails ( is this correct) and low immune system. I have a vision of feeling half dead for the next few months. I too have been contemplating about the chemo. I am thinking there is a strong possibility of it coming back so why do I have to go through all of this crap. The obvious question is I know i have 2 beautiful kids, a husband and gorgeous pets who I would give anything to be around for. Its just the thought of living like this for the immediate future that is scary. Anyway enough of my whining, I understand what you mean about having radiation 'up your sleeve' for the future. This research sounds intersting will have to check  this out. Good luck to you whatever you decide to do, they do try to tell us that doctors know best - so maybe both you and I should listen !! Good luck again. xxx Natalie

Thanks for your post Amanda. I am 47 so I guess the findings of that research would apply to me. I will see if I can find it on the net. Thanks again and best wishes.

Cate

If you don't mind me asking - how old are you?  

There was research presented at ASCO in 2011 that looked at pre menopausal women and it suggested that radiation of chest wall was beneficial in reducing risk of local/chest wall recurrence.

I was low risk (2b - small tumor 2.2cm and a couple of very small ones and 2 affected nodes) and had decided to radiate but never got the chance - my disease spread to my lungs and further nodes before I had even finished the FEC treatment ad started taxotere and herceptin.  

It is a personal decision completely and it is a great sign that with such a large tumor you have had a complete response to chemotherapy.  

My understanding of radiation is it will not reduce metastisis to other parts of the body - just local (skin and chest wall).  

I wish you the best in making your decision. You have time and you do not have to be rushed into a decision.  My oncologist said she has changed her practice recommendations based on the study mentioned above - you should find it if you search online for it.

Amanda x

 

Thanks so much Jenn. I am finding this really hard. "D day" is on Monday and I am still undecided. Like you, I was even thinking of starting with it and then maybe pulling out. It just seems like over-treatment, but then I am afraid not to have it!  I think most of the fear comes from other people warning me I should have it as "insurance", and the fact that the only professional who has told me not to have it is my surgeon. I believe it takes more courage to refuse it than to have it, so well done you. You probably got whatever benefit there was in the 12 days anyway! Thanks again for your response and all the best.

Cate

With 3 positive nodes I would have thought you would be on the borderline for rads... I refused rads (actually I finally got up the courage and quit 12 days in) because I was so concerned about long term side effects and one of the things that helped my decision was asking my radiation oncologist (RO) what would happen if I didn't have rads and had a local recurrance. Her answer was that they would then offer rads, whereas if I had already had them they would likely only be able to offer chemo for a loco-regional recurrance. So, you are perfectly correct surmising that you can choose to "use" your rads up front or "save" them for use later if needed. I chose the latter and have no regrets. Jenn