Thought I would add to the thread with my experience in the hope it gives comfort to anyone just about to have radiotherapy. I had DCIS which is non invasive cancer of the milk ducts, no chemo needed as it does not travel and is limited to the breast. I had two lumpectomies and unfortunately lost my nipple and aereola and a bit of breast tissue. I had 15 sessions of radiotherapy and I was terrified of what was involved but can honestly say it is nothing to worry about, you lay for about 5 minutes whilst you are zapped with the lazer, you feel nothing and can go back to life as normal, however.... after about a week after I finished treatment I had a really bad burn underneath the breast tissue which was constantly moist and took several weeks to heal. I was also offered Tamoxifen and was very worried about the side effects, I realise that some people get little effects and some will have many but for me I felt the side effects would have impact on my daily life and decided not to take them. I spoke to the doctor about how effective they were as I had heard several women who had taken it and still had a new or reccurring breast cancer, he said on average if I didnt take it I have a 1% chance per year of a reaccurrance so after 10 years I have a 90% chance of no further cancer, those odds made me feel better about my choices.
Everyone is different and choices are individual so for anyone facing the choice of taking hormone drugs good luck and best wishes. xx
I've got my radiotherapy planning session on Friday but my Consultant said it might take more than one planning session (he seemed a bit daunted by my huge boobs!) and someone on here said it usually takes 2-3 weeks after the planning session to start the actual sessions so I guess I'll start mine in the middle of March.
Oddly enough, I'm not in the least bit worried about the radiotherapy. When I was preparing for surgery I was terrified and everyone kept telling me it would be fine (and I kept insisting it wouldn't!). For the radiotherapy, the more I insist that it will be fine, the more people keeping telling me about possible side effects! Like you, I'm more concerned with the hormone stuff that comes later, not so much the physical things but I'm a bit prone to hormone-related mood swings at the best of times so I worry that the Tamoxifen will turn me into a homicidal/suicidal basket case. Still think it is worth trying though but am reassured to know I can stop it if it gets too difficult.
Hi Lynne 🙂
I'm having the same dilemma but with Tamoxifen rather than Arimidex. My profile says that it will give a 1% lift to my five year survival rate, and a 2% lift to my ten year rate but fortunately, like you, my survival rate is pretty high even without the hormone.
I've decided to delay making a decision until I finish my radiotherapy (don't want to have to deal with side effects from both at the same time) but I'm leaning towards taking the drug and if the side effects are too severe, just stopping it. I'm told by my doctors that this is OK to do, so perhaps it's something you could discuss with your doctors too? It might well be that you get none or very few of the listed side effects from Arimidex and that those you do get could be controlled with other drugs so I do think it is worth trying it to see given that it isn't a 'once and for all' decision that you need to make.
I have been on Arimidex now for nearly 5 years and I am really hoping I can stay on it for another 5 - Jury seems to be out on how long etc etc and that is an on going discussion with my Onc - Side effects there are some and I had a joint pain when I first started to take them and I have noticed my hair is thinner than it used to be (but that might just be my age!) Its like my body has adjusted to them and any SE and now don't feel/notice anything. If you look at any prescription you will see the possible side effects are frightening to say the least - and it is a choice as to whether you take them or not. Not sure where your oncs stats came from they sound very precise to me - but I do know that hormone therapy tablets work on a lot of people and stop cancers from growing/reoccuring and I for one would not stop taking them. Every body reacts differently to different drugs so whose saying you will have any SE anyhow - you won't know until you try. Why not ring the helpline or ask the nurse and get their take on it before you make the decision.
The Arimidex tablets are sat here on my kitchen worktop but I cant bring myself to even swallow one! Im too scared of all the common side effects letvalone the more serious ones.
I had my appointment with the oncologist yesterday, I asked the question "what are the statistics of women with my type of breast cancer surviving over next 5yrs if they dont take hormone tablets". The answer was 92% without hormone tablets and 94% with. I know its a extra 2% but I was shocked that it was not more.
Is anyone else in this dilemma?? Im struggling!
Thanks ladies xxx
Ps im guessing that not many ladies actually write posts if their hormone treatment is going well.