I just wrote a huge essay here and there was a glitch with the website and it disappeared so I'm feeling pretty frustrated! I'll keep it very short. I'm looking for your thoughts on radiation treatment. It's hard to find anyone with the same pathology results as me: DCIS ...lumpectomy and sentinel node biopsy (clear), then re excision due to microinvasion outside DCIS making margins unclear. No invasive cancer, but high grade cells and oestrogen positive. SO...I'm pretty sure I'm not going to have hormone therapy (I'm 65, post menopausal) but I need to decide about radiation and I'm still unconvinced it won't do more harm than good. Looking for alternatives..or evidence that it's needed.another mammogram and ultra sound! PET scan? I will welcome your thoughts.

Hi Lozang, I was in your position about 10-11 months ago and I declined radiation. Like you I was DCIS, high grade, also ER+ve, lumpectomy with clear nodes, no microinvasion though. I made the decision about 10 mins into the appoint with the radiation oncologist that I wouldn't be doing it. I went to my normal oncologist and talked it through with her as well. Both she and my breast surgeon wanted a mastectomy if I declined the radiation and they were able to provide me with enough evidence that it was a good thing, I trust my BS implicitly as she has been down this path herself. I also chose to have hormone therapy as I saw how many additional quality years it gave my mum, initially Tamoxifen but after I had a total hysterectomy + BSO in Sept and became post menopausal even though I am only 42, I changed to Arimidex. I did all that in conjunction with a naturopath, who is also an oncology nurse, so I am able to really discuss my treatment options and symptom management with her and know that she isn't going to compromise my mainstream treatment. There were 2 main reasons I declined the radiation. 1st, the cancer was directly over my heart and at 41 years old with a family history of heart disease I felt the exposure was too risky and while I was assured they could reduce the exposure they confirmed it would still have been exposed and receive possible damage. I decided at my age I needed my heart more than my breast. The 2nd reason was more an emotional one, my mother was diagnosed with breast cancer aged 42 and my desire (translate that to compulsive need) to do things differently. She was early stage like all of us so had a lumpectomy and radiation as her treatment. She developed metastic breast cancer, in her top rib behind the initial BC breast. Coincidentally all of her complications were also on her left side within the radiation exposure area, common sense says that of course they were weaker so when the body is fighting they won't hold up as well but it still played a big part in my decision. If declining is something you are considering I'd strongly suggest you sit down with you oncologist and/or surgeon and discuss what they recommend instead and why. When I went back to them and said I don't want this, there was no judgement they just said OK how about this for a plan B. Do a heap of reading and go back with your reasons and suggestions and collaborate with your medical team, you will be able to come up with a treatment plan that they are satisfied with and works for you. Good luck, Jen

Hi Lozang, The abnormal cells seen in DCIS are actually cancer cells but they have not yet spread out from the milk ducts - if they had that would be invasive ductal carcinoma (see: canceraustralia.gov.au/affected-cancer/cancer-types/breast-cancer/about-breast-cancer/types-breast-cancer/what-ductal-carcinoma-situ-dcis), so although it is confusing, as DCIS is often called a pre-cancer or non-cancer, it actually is simply referring to the fact that the cells have not yet become invasive and therefore life-threatening. The big problem at the moment is that no-one is yet able to predict who will develop invasive cancer after a diagnosis of DCIS, so the standard treatment is surgery, and possibly radiation and hormone therapies (if oestrogen positive) depending on your personal risk profile. It is important that you speak to the radiation oncologist about your risk of recurrence and to discuss the pros and cons of this treatment with them so that you have a good basis to make the decision that is right for you based on your circumstances. It is all a bit of a gamble, but it can be reassuring to know that you have done everything possible not to be travelling down this path again. My mum had a similar diagnosis to you and decided to have radiation (although it meant leaving home for 6 weeks) and had hormone therapy for 5 yrs and I'm happy to say she has been cancer-free for the past 15yrs. Best of luck with your decision and hope all goes well for you. Jane xx

I was just on breast cancer.org recently after a year's absence and I was impressed by a range of things but noticed some good dcis info and input from women. Best wishes

Hello Lozang DCIS seems to confuse all the medicos as there are so many differing opinions. I am convinced that all the BreastScreen mammograms cause DCIS. In years gone by it was never even detected and did not go on to become 'breast cancer'. (Wait for the criticism to come from these comments). If your treatment team recommends radiation then go for it but ask ask ask - don't go in blindly. I have rejected Tamoxifen as when asking about the statistics and how they get the percentages it says it can be of minimal help for our age group or older. Statistics are apparently based on menopause, life expectancy etc etc. Anyway, listen to your heart and follow what feels best for you. Hugs Summer :-)

Summer we have exactly the same thoughts re mammograms and DCIS... I mean come on when the squeeze your breast to the size of a pancake seriously will that not cause anything???? Chriss

Decision about radiation | BCNA Online Network

16 Replies

Lozang
Member
10 years ago
I really appreciate all your comments. I'll have a look at the breast cancer.org site again, thanks. Yes, on one hand I'm told "DCIS is not breast cancer" but then I'm told to take up follow up treatment which is targeting any "remnant cancer cells". That's confusing for a start.

And yes, I too have wondered about the effects of mammograms every two years for the last 30 years (my younger sister died from bc at age 31). But it's a bit late now..I've entered the "system". Just don't know when to "exit".
June1952
Member
10 years ago
Thanks, Mona.

I have looked at that site (although I did not see the input from women) and am wondering about the Oncotype DX DCIS test. I wonder if this is something we are able to have in Australia ? Seems it would be a great thing and save lots of worry.

As I am in a rural area (my surgeon does not even do reconstructions) so maybe this is available in cities ?

Summer :-)
June1952
Member
10 years ago
Hi Chriss

I will send you a personal message rather than continue Lozang's post with a controversial discussion !

Others can always say they want to talk about it on another post.

Summer :-)
ChrissK
Member
10 years ago
Summer we have exactly the same thoughts re mammograms and DCIS... I mean come on when the squeeze your breast to the size of a pancake seriously will that not cause anything????

Chriss
June1952
Member
10 years ago
Hello Lozang

DCIS seems to confuse all the medicos as there are so many differing opinions.

I am convinced that all the BreastScreen mammograms cause DCIS. In years gone by it was never even detected and did not go on to become 'breast cancer'. (Wait for the criticism to come from these comments).

If your treatment team recommends radiation then go for it but ask ask ask - don't go in blindly.

I have rejected Tamoxifen as when asking about the statistics and how they get the percentages it says it can be of minimal help for our age group or older. Statistics are apparently based on menopause, life expectancy etc etc.

Anyway, listen to your heart and follow what feels best for you.

Hugs Summer :-)
mona63
Member
10 years ago
I was just on breast cancer.org recently after a year's absence and I was impressed by a range of things but noticed some good dcis info and input from women. Best wishes

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