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Breast Cancer | Last Active: 10 hours ago | Replies (9)Comment receiving replies
@anatomary
I had similar but not as close to the areola (nipple) - steriotactic path turned out to be Atypical Ductal Hyperlasia (ADH). I had a mag seed placed followed by a lumpectomy -and the lumpectomy path came back ADH with Lobular Carcinoma In-Situ (LCIS). I was called in after the first mammo for a second, and then I waited for the radiologist to read and advise while at the Breast Center - and then we booked the steriotactic a for a day or two later. So I only had one steriotactic visit - and following that I went back for a mag seed insertion prior to the lumpectomy. During my steriotactic they pulled the micro-calcifications for examination; although the samples looked like small bits of fat - yes, I wanted to see it before the sample was sent for path. Harvesting areas of micro-calcs might be standard and really what the steriotactic diagnostic was designed for. So it could be they would like a second sample to verify readings of the first - or maybe they would like to sample the area of "ill defined density"? Be confident that the diagnostics they order will help them to classify your condition and guide your treatment plan. BTW LCIS sounds terrible but it is a form of pre-cancer. Ductal Carcinoma In-Situ (DCIS) also sounds terrible but it too is a form of pre-cancer. DCIS is much more common than LCIS. Also, some argue LCIS and DCIS are not cancer at all because they are "in-situ" and not spread (invasive) through other tissues. The problem is, these forms can become invasive and metastatic.; then known as ILC and IDC. I have seen LCIS classed as cancer 0 and as pre-cancer - but DCIS has many more grades 0-3 and generally a more aggressive treatment plan. Odd thing is, having a second DX o f LCIS increases everyones life time risk of breast cancer in either breast. When you have LCIS you are three or four times more likely than the average women to develop BC - so while it is not classed the same as DCIS it carries that additional risk for cancer in both breasts.
Since I had a dual diagnosis of ADH and LCIS I had genetic counseling and we ran my genome to get a better idea of my actual lifetime risk. I did not have BRCA mutations but two others (BRIP and BMP1A) that are suspect for increased risk to develop BC; they need more data to know for certain. I do have a family history of BC. I was offered 6 month/biannual surveillance and/or 5-10 year tamoxifen or a prophylactic bilateral mastectomy as treatment plans. I preferred a one and done scenario and opted for the prophylactic double mastectomy - and without reconstruction. Further, I elected an alternative flat closure (AFC) over the standard simple mastectomy. There are social media groups that can educate you about the AFC procedure and provide support. The best for AFC is "not putting on a shirt" - https://notputtingonashirt.org/. I was lucky, path on both breasts came back clear for cancer so I required no further treatments; other than PT for movement and I see a OT lymphatic specialist for residual lymphedema.
We think the lymphedema (up on the side with ADH/LCIS) will not be chronic and possibly due to the close timing between the lumpectomy (May 16th) and mastectomy (July 9th) - and I had a previous lumpectomy in the same breast and area in 1998. I am almost five months out and feeling great; a bit worried by the lymphedema but it is sloooowly going down.
Waiting for path reports is always the worst part of the whole process; yes, even worse than the double mastectomy! I think I feel this way because having the mastectomy allowed me to take control of the situation; catharsis! To me, waiting to hear back is almost unbearable. It should be no surprise I went for the one and done double mastectomy with no reconstruction - I did not want further complications or future surgeries. My current life time risk is now 2-3%. FYI Despite having the mastectomy I still have to monitor by chest wall for recurrence. This doesn't bother at all; I did it anyway when I had breasts.
I hope my journey gives you a starting point to educate yourself about possible DX and treatment plans. Try not to worry (I know it is hard!) because you may find that your diagnosis is not as bad as you may have imagined. And if it does turn out to be one of the most nasty varieties, know you can navigate the storm - you'll learn about your disease, possible treatments, and make choices with your care team. You are in a good starting place with the Mayo community; so many wonderful contributors, some decades long survivors - added bonus of long term perspective, and the monitors will provide you with additional links or research articles that are very informative. I wish you best prognosis and a wonderful life - good luck with your journey!
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@anatomary Thank you for this descriptive response and for the link. I appreciate you more than you know.
I told my primary care doctor that I would choose mastectomy over being poked prodded irradiated for however many days weeks months. I am 51 1/2 yrs old my breast feeding and being groped days are long over. I opt for whatever comfort I can keep.
Again Thank you for sharing with me.
~Wende