What helped you make treatment decisions following DCIS lumpectomy?

Hi. I finished radiation 20 treatments last month after double lumpectomies. I didn’t want radiation since I had DCIS, Stage 0, but the chance of recurrence was so much smaller with the radiation so I went ahead with it.

I really, really didn’t want to start the aromatase inhibitor, Anastrozole, (I’m 68). But with the urging from my doctors, I told them I’d try it, but if the side effects were too much for me I would stop taking it. I started taking Anastrozole on May 1st and feel fine but it’s only been a little over 2 weeks so we shall see. I know of one friend who takes Anastrozole. She’s been on it for several years and leads a very active life. So, I may stay on it for the whole 5 years or be off it next month. Time will tell.

I had a lumpectomy for a caught-early mass (5-6 mm, clean sentinel lymph nodes) 18 months ago. I think the smartest thing I did in addition to agreeing to a sentinel lymph node biopsy was to have the OncotypeDX test done at the suggestion of my oncologist.

It yielded a low risk of recurrence as defined and measured by the OncotypeDX model so chemo was not recommended. I didn't have radiation for a different reason. I tried but discontinued anastrazole due to nasty side effects. If I had had a significant risk of recurrence as yielded by the OncotypeDX, I may have had to made a different decision but I am extremely glad to dodge the nasty downside of estrogen-production blockers' effects on the body. Two oncologist told me that if I took them I would likely have to take osteoporosis drugs within 6 to 12 months. I have osteopenia and want to remain in that range as long as possible. There are a lot of things to consider when making these decisions and they're very personal. The same cancer that I had that is a bit of a non-event at this age, if caught early, would have been considered very aggressive in a much younger woman. So there are a lot of variables to consider including quality of life and lifestyle.

Full disclosure, the decisions I made were based on invasive ductal carcinoma, not DCIS. I agree with the barbaric statement, but I would also say that treatments are getting better all the time.
I was 38 when originally diagnosed, before all the genetic testing, oncotype, mammaprint or any of those type of tests were available. I received a pathology report, and a conversation with my amazing surgeon who said more surgery, then I will turn you over to oncology.
Chemo, more surgery, radiation then came tamoxifen for 5 years and anastrazole for 10.
I agree that we have to decide who to trust and then understand that it is an imperfect choice. We weigh all the decisions and make the best one we can. Because I was young and I really wanted to stop this thing, I did every treatment they recommended. It wasn’t always easy, but I am still here to whine about it almost 19 years later.
The most persistent side effect I have is hot flashes, to this day. I also get pretty stiff if I don’t get up and get moving.
May I ask your age range? Since you are asking about age, it must be relevant to you?

I made my decisions in an unusual way--after consulting with numerous people who know me. My main committee was my daughter, my husband, and my best friend. They know my values, my co-morbities, etc. Of course I had a surgeon, a radiation oncologist, an oncologist--and 3 additional medical opinions. However, I wanted feedback outside of specialists who might treat me. I talked to:
a dear friend who is a therapist currently in breast cancer treatment
my sister who had breast cancer
an actual therapist
my rabbi
a friend who is a palliative care nurse
a hospice nurse
an alternative healer/bodyworker
a friend who was a doctor and is a long time survivor of a usually fatal cancer
my PCP
They didn't tell me what to do but helped me weight risk versus reward. I had a lumpectomy, 3 weeks radiation, letrozole, and no chemo. My tumor is neuroendocrine and HER2. A lot of my concerns were that chemo would destroy what is left of my kidney function (I have kidney disease) and/or pulmonary function (I have one lung.) My goal was to treat the cancer within reason but not end up an invalid for the rest of whatever life I have.
Best of luck & blessings to everyone.

Thank you for your input Chris it is very helpful. I am 70 yrs old and have been single for 20 years. The diagnosis was my birthday gift😓 last year. My age has a lot to do with my decisions Chris because I’ve had a great life and have wonderful friends and family supporting me. I enjoy being active and healthy at my age. It’s an important aspect of my daily life that I’m not willing to risk giving up for 5yrs with possible short and long term side effects from medication . My doctor told me that I’m “lucky” having my cancer situation- DCIS Paget’s that was caught early. Whatever time I have left on this earth I am grateful for and I am living everyday to the fullest doing everything that brings me joy . I just retired from my job which I wasn’t planning to do yet because I enjoy what I do. However my life is pulling me in a new direction. I’ve been Spending time with friends and family, gardening, riding my bike swimming, hiking and yoga ~I’m a yoga \meditation instructor. I also have just come thru 2 years of caregiving for my 99 yr old father- he passed on thanksgiving 2022. My body / mind / mental state is just coming into balance while still grieving losing both my parents in 2 yrs and the shock of this diagnosis. So I’m beginning radiation on monday and that’s That’s all I can manage for now…. Just live my life and be happy with what I have left. I’m at peace with my decision and we’ll see what happens down the road. My dr supports whatever I decide.

Thank you for your input. I normally ask a million questions but now I’m going to do what you suggest too. I practiced the breathing technique during simulation too. But now I want to see the data. Thanks again

Thank you so much for sharing your situation. It gives me even more confidence that I’m making the right decision for my situation and for my self. ❤️

Thank you for your feedback. Every little bit helps with decision making. Good to hear your friend still has an active lifestyle and so far you are doing well. My radiation begins on Monday. We’ll see what happens 💕

Good luck with the radiation treatments. I had a rash after the first week or so - just itchy - and aloe (from the plant) worked really well. But the last few treatments made my skin dark red and “sun” burned. Aquaphor ointment took out the burn and a week later the redness was gone. Good luck again and keep us posted. 💕

You're welcome! It's daunting and frightening, I know. But you seem to be in a very good place physically and emotionally. The time will pass. Good health!!