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Topic: Updates on DCIS decisions after lumpectomy needed

Forum: DCIS (Ductal Carcinoma In Situ) — Just diagnosed, in treatment, or finished treatment for DCIS.

Posted on: Jul 14, 2020 06:00PM

Kim0215 wrote:

Ladies - I've researched previous posts dating back to 2018 but have seen nothing recent. Can anyone let me know success stories or otherwise of lumpectomy only and where you are? I posted my diagnosis on my profile. my lumpectomy was 6/17. My OncotypeDX score came back to day as a 23 with an 8% chance of recurrence. That to me is darn good odds and my pathology report was best case scenario. The rads would be on my left side, and to go from an 8% to 4% chance of recurrence within 10 years at age 54 doesn't seem worth the trade off. I'm perimenopausal and and not doing the Tamoxifen either. Very healthy, active, and everything I read points to doctors wanting the safe route but that it is overtreated. I am ER/PR+ but choose to believe menopause will kick in for a natural regression of the hormones.

I know everyone is different but if you could share your feedback it would be helpful to me. I do not want to do radiation unless absolutely necessary. Thank you!

Kim

Dx 4/16/2020, DCIS, Left, <1cm, Stage 0, Grade 2, ER+/PR+, HER2-
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Jul 14, 2020 08:06PM Beesie wrote:

Kim, hopefully someone will stop by who has done a lumpectomy only for DCIS.

In addition to the Oncotype score, the pathology of your diagnosis also plays into your recurrence risk.

- How large was your area of DCIS?
- Most importantly, how large were the surgical margins?

Have you checked out what the Van Nuys Index has to say about your situation? Back in the days before the Oncotype and other similar tests, this model was used quite a lot. I think it still has validity.

What would your total score be? (Add up the 1, 2, or 3 scores you would get in each category to get a total between 4 and 12.):




“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Jul 21, 2020 12:36PM ldowns99 wrote:

Hi Kim,

I'm just finishing up 16 radiation treatments on Thursday. My DCIS was high grade and it took 3 surgeries/lumpectomies/incisions to get it all out. I opted to go ahead with radiation because it was an aggressive type of DCIS and I ended up with a close margin of 1.7 mm instead of the ideal 2 mm. An Oncotype test wasn't offered to me.

Mine was also on the left side, so I've had to do the breathing technique for treatments to protect my heart. Took some getting used to, and I won't miss it, but it's been OK. My side effects have been fine - some redness and itchiness over the breast area and a bit in my armpit. No real fatigue that's been noticeable. I've kept up a steady regimen of exercise, cold compresses after treatment, and skin care and my integrative doc. had me up my protein intake to 60g/day to help ward off fatigue. So, mine's been an easy time overall.

I was originally scheduled for 21 treatments, but the cavity created by my lumpectomies was larger than my radiologist expected, so he cut it back by a week so I have less toxicity.

Not an easy decision for sure. I'm 51 and am also perimenopausal. I'm due to have the Tamoxifen conversation with my medical oncologist this Friday. Ugh.

Hope this provides a bit of insight for you.

Take care!

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Jul 24, 2020 10:36AM - edited Jul 26, 2020 02:57PM by KARW41

I got a lumpectomy, with positive margins, turned out to be a lot more DCIS in there than they thought, (went from 4 cm to 9 cm after lumpectomy) and part of it only showed up on mastectomy (up to I believe 12 cm). I didn't want radiation and Tamoxifen due to watching my mother suffer three times with breast cancer and all that, so I got a bilateral mastectomy. It wasn't bad at all and now I'm just dealing with swelling because I'm too active too soon.

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Jul 25, 2020 09:26AM momzr wrote:

Kim0215 - I am one who chose to only have lumpectomy with no additional treatment - Here is my DCIS 'story' - I had my diagnosis of DCIS back in July, 2008 -- 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 of 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, but I did not choose to have any additional treatment beyond lumpectomy. I am due for annual mammogram in August and do I still 'worry' a bit each time I go - sure - but 'so far so good' in my particular case.

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Aug 17, 2020 06:56PM OldOakTree wrote:

Hi Kim - I don't come here anywhere near as often as I used, I pop in about every 6 months so am just seeing your post now. I was diagnosed in 2003 and had an excisional biopsy only after calcifications showed up on my mammogram. At that time I found out they actually were there the previous year but the person reading the mammo missed them! My DCIS was around 4mm (I don't remember the exact size) and the closest margin was 9 mm. I talked to several doctors and most said radiation wasn't necessary; the RO was the only one who strongly recommended it. So I opted out of both that and tamox after talking with an oncologist who specialized in bc. I just had my 17 year mammo and thankfully I passed. I did have one mammo in which more calcifications were found, that biopsy was negative for cancer. I still worry about getting a recurrence. At this point it's not likely I'd get one from the original cancer, I'm worried about a entirely new one.

Wondering if you've made a decision about radiation yet?

Diagnosed in 2003 with small area of DCIS, treated with lumpectomy only.

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