Ten years "all clear" - lumpectomy only - no other treatment

momzr

Just wanted to share that I had my annual mammogram last week and got the "no sign of cancer" letter in the mail over the weekend. I was diagnosed with DCIS in my left breast (very tiny 1.6 mm single focus) in July of 2008 at age 46. At that time I had a lumpectomy but did no additional treatment. (This decision was made after lengthy discussion of possible radiation, but decided to forego it with radiation oncologist in agreement on the decision). The ten years has not been without its "scares" - I have had one additional lumpectomy/excisional biopsy as well as a stereotactic biopsy on the left breast. Both of those showed 'benign' conditions. When annual screening week rolls around I get a little nervous, but really don't think about the DCIS diagnosis much anymore. Just wanted to share this 'ten year' news. Good luck to all who are making decisions concerning DCIS.

Ingerp

That is wonderful news!! Congrats on the big milestone

MyLoveO

Congrats!!! Great news. I was dx last year and also refused radiation. My Dcis was 1.5 mm high grade on the final path report after the lumpectomy but grade 2 on the previous biopsy.

vampeyes

That's wonderful new's - 10 years!! Congrats momzr and thanks for posting this wonderful news.

LAstar

Congratulations!!!! What grade was your DCIS?

momzr

Mine, as mentioned in original post, was a very small focus area of DCIS (1.6 mm) with nothing identified as comedo (path report indicated solid & cribriform) NO necrosis present, considered intermediate grade, and I had clear margins after the surgical excision/lumpectomy.

32B

Hi momzr,

Congratulations! That's great to hear. Was Tamoxifen ever on the table for you? I ask because I am supposed to start mine soon but nervous about side effects.

momzr

Hi 32B - When I had the DCIS diagnosis ten years ago here is what happened when I met with a Medical Oncologist: At follow up appt. a week after that biopsy in 2008, the medical oncologist spoke with me and told me that my tumor was so tiny (as mentioned in original post my DCIS area was 1.6 mm) - he thought there was a miniscule chance it would cause me problems down the road and he did not recommend radiation therapy or hormonal therapy with their associated risks and side effects for my particular situation. He actually told me I was not to lose sleep over this or worry about it and he never expected to see me again. So far - he's been right and I've been "fine" - however, my own mother was diagnosed with Stage 1 Breast Cancer two years ago this past May (she is now 77) and she IS taking an AI for five years since her diagnosis. Having my Mom also get diagnosed does worry me a little more each year when I go for my screening, but am super happy to be ten years out with no further troubles. From what I see of others, you can always try it and then 'stop' the drug if it is too bothersome to you - probably all depends on your age, size of your DCIS, 'grade', etc. Good luck with your treatment!

32B

Thank you for the info! Best wishes to you and your mom!

AnnieBear

It's been eight years for me. Unfortunately I did do radiation which in itself wasn't bad, but it led to leaking ducts and I had a ductal excision that left my boob really ugly and messed up, but .... I have been lucky. I did not do Tamoxifen - tried it a few times but side effects were too much.

PurpleCat

Thank so much for the information! I got my biopsy results on Friday and am trying to hang on until I can see the surgeon, hopefully next week. I really needed to read a positive story like this today.

32B

PurpleCat I'm glad you found this community. Ask us anything.

Anonymous

Congratulations, momzr!

Heck, my very first post in this forum was about my desire to NOT have radiation and to NOT take hormonal therapy.

Somewhere along the line my two oncologists convinced me I needed radiation (my third treatment is tommorw) and hormonal therapy (which I begin a few weeks after my radiation treatment ends).

Hope I haven't made a mistake. I'm 74.

JoE777

hey viewfinder, I had radiation at 62 with no problems. Only needed 16 , the last week I began to look a little sunburned but I had no regrets. J

momzr

viewfinder - I think you will be fine - my own mother at age 75 (two years ago) was diagnosed with Stage 1 Breast Cancer and she went through radiation (16 treatments/short course) and is taking an AI now for five years and has handled it well. The AI is giving her some joint pain at times, but nothing she feels she can't actually handle. Keep your chin up!

MastectomySister

congratulations! 10 years is a wonderful accomolishment

BadLuck

so I too had a short term 16 days radiation treatments & now taking AL hormone therapy. I'm having a few side effects & have 5 years to do them. Does your mom have osteoporosis? They did a bone scan on me & it showed 2.6 for my t-score. My oncologist wants me now to take one of the dangerous drugs for osteoporosis. I'm going to refuse them because they have worse side effects than AL.

momzr

BadLuck - my Mom does not have osteoporosis. In fact, I just took her for a four month check with the oncologist that has prescribed the five year drug this week and everything looked great. She had a bone scan in June which they said was fine and they did not find anything worrisome. She goes every 4 months to be checked at oncologist office. She DOES have more joint pain with these meds than she did before (and has some arthritis too), but manages to tolerate it. She was told if it was terrible pain for her she could go off the meds at her age (77 this year). So far she's hanging in with the five years of meds (she's just started into year 3 at this point). Good luck to you!

momzr

Hello to all - I have now passed my eleven year 'anniversary' of the DCIS diagnosis and just had my annual mammogram again with a 'good report' of no suspicious abnormalities - come back in a year! So relieved to receive that news as it is a bit of a nervous week for me the week that I have my annual mammogram scheduled each year. Also took my Mother this week for her check with oncologist and she is now only going every six months (rather than every 4 months) to see oncology with two more years left to take her AI drug. She's doing well also. Just wanted to share the 'good' update!

BCyogasurvey

Congratulations ! What a landmark.

SandiBeach57

Hello DCIS friends, please continue to have your annual checks with your oncologist. For some of us, the tumor markers (like CA 15.3) will indicate a trend upwards if there are any sneaky cells growing (and going from DCIS to IDC).

So happy to hear that so many of you are doing well!

Blahndie74

I'm at 3yr mark. Mammo last month and FINALLY get to move to yearly again. Your posts ease my mind. 💖

32B

I needed some good news! Thanks for sharing.

yogamom2

Congratulations! Thanks for sharing the good news. Like you and many others I also decided to have surgery only. Wonderful to hear a "success story". I was treated at the beginning of this year so will have my first "routine" diagnostic mammo and ultra sound in Nov. Fingers crossed.

Confused516

anyone BRAC + with DCIS and only did lumpectomy ( no radiation)??

Being told to have bilateral mastectomy due to high risk. My mother, her sisters, their mother, my cousin all have had breast cancer. So confused on what to do, everyday I think I know what I want then change my mind.

Help

Beesie

Confused516, with a DCIS diagnosis and with you being BRCA positive, you are dealing with two very different issues.

Whether your DCIS diagnosis is one that can be relatively safely treated with a lumpectomy alone, with no radiation, depends entirely on the specifics of the DCIS diagnosis - your BRCA status doesn't affect this. A small single focus of DCIS, particularly if it is low grade, might present a low recurrence risk after a lumpectomy alone. A larger and/or higher grade and/or multi-focal DCIS diagnosis would not be a good candidate for a lumpectomy alone - the recurrence risk would be too high.

Then there is your BRCA status, which may have caused this DCIS to develop, but perhaps more importantly, also significantly increases your future risk to develop a new breast cancer, completely separate from this diagnosis, in either breast. This could happen any time over your lifetime. Whether or not you have rads now, with this DCIS diagnosis, doesn't change that risk.

So you in effect have two separate decisions and actions. The first is 'what is the right treatment for my current DCIS diagnosis?' The second is 'what is the right treatment to address my high long-term breast cancer risk due to being BRCA positive?' You have to decide if you want to go ahead with both actions now or just the first.