Decision about radiation

Hi Lozang

As it's been pointed out so well throughout this thread, a DCIS diagnosis can be confusing.  Because of this, decision making around DCIS can be complex and it's not always easy to explain what DCIS is to family and friends. 

BCNA is currently working on a project that will look to explore and address the information needs of women diagnosed with DCIS. Part of this project will be a survey of our members. Keep an eye out on our website and on line network for more details.

Best
Eliisa

Hi Lozang, check with your Dr if a Ki 67 test was done by pathology, I believe this is known as a ' poor mans Oncotype test ' it apparently can give you a good idea of how invasive your cancer can be/become 

also ask if they can plug you in online to an adjuvant therapy test 

good luck with your decision . 

Hi Lozang,

I just wanted to jump in here to say hi. A few times I have written a post and click the big pink "comment" button instead of scrolling down to the "post" button and lost the post. As we don't have a save/draft button I would suggest writing your post in notepad or word to make sure you don't lose your post next time.

~ Ann-Marie

So much gratitude for everyone's time and energy to post. I go forward wholeheartedly. 

Sorry. "Breast cancer.org" .... Not "breast anger" ....but maybe that's why I got it? Suppressed anger?  ??

Also didn't mention strong family history of breast cancer. Thanks everyone! 

Thank you. This forum and the information on breast anger.org as well as dr Boyages book on DCIS as well as my own i tuition have helped to guide me to make the decision to go ahead with the recommended radiation. I am also clear about refusing hormone therapy: just too many unknowns and risks with that one.

Feeling much more grounded since making e decision to go ahead. 

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

Summer unfortunately the Oncotype test is not available in Australia (yet).... but I asked my Onco and it will cost $6,000.00 for my test to be sent to USA.

Chriss

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

I had 3 mm invasive loblar carcinoma and DCIS and LCIS(Pre cancerous cells in milk duct and milk gland). The 3mm cancer was so small it was completely removed when they did core biobsy, lumpectomy surgergy had clear margin clear sentinal lymp node.  My radiation oncologist explained about the tricky of cancer cell ie no one can be 100% garuntee that there is few cells left, undetected. Without radiation the chance of having recurred BC is 40% and the choice is mine whether to have or not to have.  As a medical scientist I consider that the 40% chance is high enough to refuse radition so I went for it. 

As for a mammogram I believe in it as without my routine mammogram I am sure that my cancer would not be be detected in a very early stage like this.

My surgeon explained that it is a statistic in Australia tht it is 1 in 8 female over the age of 60 will definitely has breast cancer, it is a mutation of the gene. I am unlucky to be the 1 side not the 7 side that why I do not want to play with no radiation in case I will be in the wrong side again.

No health professions I saw pressed me to do anything only explained the options. I chose (base on reading widely on the subject) what I think will be a benefit to mein your case the decision is also yours.

Hope you choose the right one

Cheers

Piak

Piak