Anyone a long way out from a DCIS diagnosis?
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Hi
Beesie have you been takin my hormontherapy ?
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Elena, what is your diagnosis and what surgery did you have? That makes a lot of difference as to whether endocrine therapy would be advisable.
After my single mastectomy in 2005 my MO recommended against endocrine therapy, saying that the risk reduction benefit relative to my diagnosis was minimal (less benefit than risk of serious side effects) and that the only reason to take it would be to reduce the risk of a new primary in the other breast. That risk is higher for someone previously diagnosed with BC than for the average woman, but that risk is spread out over the rest of our lifetime - at my age then, that would have been 35 to 40 years. So my MO felt that because my risk would be higher when I was older - the highest risk years for women to develop BC are in their 60s and 70s - and because in those days endocrine therapy was only given for 5 years, taking Tamoxifen then as a risk reduction wouldn't provide much risk reduction benefit, although he would have prescribed it if I'd asked. I did my research and ending up agreeing with him. His recommendation might have been different today, now that Tamoxifen is given for 10 years, or 5 years of Tamox is often followed by 5 years of an AI. Since the benefit extends for a number of years beyond when you are taking these meds, that would provide a lot more coverage (in terms of years) than the protocol from my days.
By the way, the screen name is Beesie, not Bessie.
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Thanks Beesie :
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I had my DCIS diagnosis in July, 2008 (so twelve years ago now) - and I chose lumpectomy only with no additional treatment - Here is my DCIS 'story' - I had my diagnosis of DCIS in left breast -- after a digital mamm which showed a cluster of microcalcifications followed by a lumpectomy/surgical excision. Mine 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. I have not had any additional treatment besides my excisional biopsy/surgical excision in July '08. At follow up appt. a medical oncologist spoke with me and told me that my tumor was so tiny 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. I also met with a radiation oncologist who wavered a bit on his recommendation, (seems I was sort of in a 'gray' area on rad treatments mainly because of my age at that time - 46 - and one margin although clear was quite 'close' at 1.3 mm) but ultimately told me after we had a long discussion that I get a 'pass'. Therefore, I decided against doing anything more except for close monitoring with mammograms and MRI's as needed.I have had two additional biopsies since the initial diagnosis of that tiny area of DCIS. In summer 2011 microcalc's were again found in that same left breast and I endured another excisional biopsy which indicated all benign conditions. In July 2012 a small grouping of microcalc's (less than ten) were again showing up in left breast on mamm and I had a stereotactic biopsy to remove the majority of them which also came back benign. They put a 'marker' in at the time of stereo biopsy and I have had follow up mamm's since then which thankfully continue to be 'stable' in that area. I am at the point now over twelve years out from the lumpectomy/surgical excision, of being back to annual checks/mamm's. My DCIS was a very, very tiny area with no additional treatment beyond lumpectomy. I am actually due for annual screening mammogram this month of August and do still 'worry' each year when that time rolls around - but 'so far so good' in my particular case.
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I am now 17 years out from my original diagnosis. For the first 6 or 8 years I alternated between MRI and mammo every 6 months, now I just get the annual mammo. Gotta say, I miss the extra security of the MRI. I still worry about it coming back but not as much as I used to. Because of covid my mammo this year was delayed by 6 months which put me on edge. My doctor also ordered a u/s this year because my breasts are "extremely" dense. I thought that was supposed to improve after menopause but I guess not in my case. Fortunately both tests came out normal.
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Happy for you OldOakTree!!!!
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I was diagnosed going on 10 years ago. DCIS Grade 3 ER-/PR-/HER2+ I had a lumpectomy and radiation and haven't had any issues since then. My mom was diagnosed 3 years before I was everything the same as mine but she was ER+/PR+ and had mastectomy plus radiation. Both of us have had no further occurrences or complications and are doing great!
I still get nervous before mammograms and ultrasounds, which I still get and alternate every 6 months, but I don't think that will ever go away completely.0 -
Well, I am 20 years post DCIS, left breast. I had a 2nd opinion on my pathology from lumpectomy that also picked up LCIS. I had radiation as well. I was 35 when diagnosed and am now 55. I have had normal mammograms all these years up until last week. I received a call back on my 3D mammogram the next day and I was so afraid to call them back, my hands were shaking. The only thing I know is I have to go for more images and an ultrasound, but it's not my left side, this time my right. The nurse from my PCP is the one that called so I have not seem the report. But, she said something about density.
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Bluegirl, sorry you find yourself here. Unfortunately a previous diagnosis of DCIS or invasive cancer doesn't make us immune from being diagnosed again. Even when a first diagnosis is successfully treated, a new primary breast cancer can develop - we are women, we have breasts (or even just remnants of breast tissue left after a mastectomy) and breast cancer can develop. 20 years after your first diagnosis and with the concern being in the other breast, if this turns out to be anything, it wouldn't be related to your first diagnosis but would be a new breast cancer.
But just like all other women, those of us who've had breast cancer before can get call-backs for things that turn out to be nothing at all. And we can have biopsies for things that turn out to be benign. At this point, you have a call-back. Over 90% of call-backs turn out to not be cancer.
Will you be getting a copy of the report? You should have it, and it can be helpful in understanding what the imaging showed and what this might be. It could be something as simple as some unevenness caused by how your breast was squished in the mammogram machine. If that's the case, the diagnostic mammogram and ultrasound might be all that's necessary to send you on your way for another year. It would be great if that was the case.
When is your call-back scheduled?
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Dear bluegirl27,
Welcome to the BCO community. We are so glad that you reached out for support with this call back on your 3D Mammogram. Our members, as you can see, are here to support you. Here is a link to some information that pertains to Imaging Questions for you if you are able to get a copy of your report. Keep us posted on what you learn and how things go. We encourage you to post further questions and concerns as they arise.
The Mods
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It makes sense you are worried. I certainly hope it is benign though only the additional imaging will (help) determine that. It would be great if you hear all is well after this while we both realize they may want additional info even after that depending on findings. They likely will be more vigilant with your history of DCIS and LCIS as well. Please let us know as things unfold, ok?
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Thank you all so much for responding. I have sent a message to my primary care doctor to ask him to upload the report to my patient portal, so hopefully by tomorrow I will have it. I am pretty familiar with meanings of the language used, plus I have already looked at tons of information on this site which is excellent. My call back appt is 1/28. I was hoping I could get in this week. I may call tomorrow and let them know to contact me if they have a cancellation before then. As you.all know, it is true the waiting is the hardest part. I had a mammogram in 12/19 and that was fine. But, I did tell the tech that I can feel a lump on the right side, but I don't always feel it. Plus I have super lumpy breasts and just figured it was probably nothing and knew I'd be having a mammogram in a few months. So maybe there is something there, I'll find out soon enough. I wasn't too concerned when my doctors nurse called me at first because it sounded like it was nothing and she only mentioned extra mammogram pictures. But when I called the imaging center she said mammogram and ultra sound which concerned me. They couldn't give me test results and I was heading down to see my sister for the weekend for a much needed break so I didn't call my PCP to ask. I am not going to stress myself over this at least not over the top stress. LOL. Seeing the mammogram results will either help me feel better or worse. Lol
In addition, my mom died from breast cancer at 74. But, since my dx was premenopausal and hers was not they didn't necessarily think it could be genetic. But. I have not went through genetic testing although I was going to last year when covid hit.
I have a 16 yr old daughter with Down syndrome who is amazing. But, I am the only parent and it is just me and her at home. I don't have time for anything like surgery, etc nor do I have anyone who could come stay with me if I needed them. So that's what Im going with, trying to stay positive because I have wasted a lot of time in my life worrying about things that never came to be. If nothing else this hiccup is a wake up call about taking care of myself. 2020 and 2021 have been rough..
Thank you all!
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