Anyone had DCIS low grade and did not get radiation?

Hi Spes:

I understand that you received a "lumpectomy" (breast-conserving surgery "BCT") for pure DCIS (no evidence of invasive disease). Please advise if that is not the case. My response is based on those assumptions.

Grade is not the sole determinant of local recurrence risk for DCIS following BCT. Not only would the pathologist have determined the grade, but it is likely that the estrogen receptor ("ER") and progesterone receptor ("PR") status of the DCIS and the appearance ("architecture") of the DCIS cells in the ducts were determined on biopsy samples and surgical tissues. The surgical pathology will be more extensive, with an explanation of true extent of the DCIS (size) and margin status as well. Therefore, it is important to request copies of the original pathology report for all your biopsies and from surgery and consider all relevant information in your case.

By "doc" do you mean "Radiation Oncologist"? If not, please obtain a referral to a Radiation Oncologist, because the question of radiation is within their area of expertise. (Radiation is not within the area of expertise of either a breast surgeon or a medical oncologist.)

If you have already consulted with a Radiation Oncologist ("RO"), please ask the RO for a comprehensive explanation (or detailed review) of the basis for their recommendation against radiation in your case, with reference to specific relevant clinical and pathological factors, and to note both favorable and unfavorable factors. You may also consider seeking a second opinion from another RO.

The question of radiation requires a personalized risk/benefit analysis. For example, as to benefit, the Radiation Oncologist should explain: (a) your estimated personal local recurrence risk without radiation; and (b) the estimated local recurrence risk if you choose radiation. This will tell you the estimated magnitude of potential benefit in your case. Then, that benefit is weighed against the incidence of serious adverse events from radiation, which should also have been explained.

For more information, please see Beesie's post (which I quote in party below), "A layperson's guide to DCIS":

https://community.breastcancer.org/forum/68/topics/790992?page=8#idx_230

"- Radiation is usually recommended after a lumpectomy for DCIS but in some cases radiation may provide little benefit and might not be necessary. How much benefit you will get from radiation, in terms of a reduction in recurrence risk, all depends on what your risk was to begin with. Generally it's believed that radiation reduces recurrence by approx. 50%. However if your recurrence risk is only 4% to begin with, your recurrence risk reduction will be only 2% (50% of 4%). On the other hand, if your recurrence risk after surgery alone is 60%, your recurrence risk reduction from radiation will be 30% (50% of 60%). The Van Nuys Prognostic Index (VNPI), developed specifically for DCIS, is commonly used to determine recurrence risk and whether or not radiation should be recommended. The VNPI calculates a 'score' based on margin size, tumor size, and tumor grade/aggressiveness. A low score corresponds with a very low recurrence risk. Therefore women with a low VNPI score may be able to forgo radiation with little risk. Another tool available for those with DCIS who are unsure about whether or not to have radiation after a lumpectomy is the new Oncotype test (see above for more information)."

The size of the absolute benefit in your specific case (based on all relevant clinical and pathological factors) must be weighed against the incidence of serious adverse events from radiation, in light of your age, health and presentation, and personal risk tolerance. Because of differences in personal risk tolerance, two people with the exact same risk profile may decide the question of radiation differently. However, it is your personal risk tolerance that matters most to your decision.

For those with hormone receptor positive disease (ER and/or PR positive), additional consultation with a Medical Oncologist is recommended to discuss possible endocrine therapy (e.g., tamoxifen or an aromatase inhibitor).

I am a layperson with no medical training, so please confirm all information with your team.

Hopefully, others will come along with their personal experiences.

BarredOwl

Specs - Here is my DCIS 'story' - I had my diagnosis of DCIS back in July, 2008 (Eight years ago now) -- 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 which got that tiny area of DCIS out. At follow up appt. a week after that biopsy, 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. He actually told me I was not to lose sleep over this or worry about it and he never expected to see me again. 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, eight years since first lumpectomy/surgical excision, of being back to annual checks. My DCIS was a very, very tiny area, but I did not choose to do any further treatment.

spes, I had lumpectomy for tiny amount of dcis (3 mm) in February. I did not get radiation. Just on tamoxifen. Would love to hear from others in the same boat!

Janet456, glad you're doing well! I have my first 6 month mammo since dx and getting nervous.

Good luck Spes and Robinda. I'm just back from getting my results. All good, but I still hate sitting in that consulting room in a gown waiting for the footsteps. xx

I'm getting my first mammo check since dx 6 months ago. Over the years I've had areas of calcifications in same breast which came back benign. I'm wondering if more will keep coming up post lumpectomy? Don't know how many more biopsies I can go thru. Hopefully they won't pop up again. Anyone have years of calcifications and then they stopped?