DCIS in both breasts and each breast is different?

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sugartoes
sugartoes Member Posts: 39
edited November 2014 in DCIS (Ductal Carcinoma In Situ)

I am new to the forum.  I have tried using the search and cannot find anyone who has DCIS in both breasts. I had a mammogram the first of September.  It showed microcalcifications in BOTH breasts.  I was then scheduled for a stereotactic biopsy which my results came back in 26 hours showing I have DCIS in BOTH BREASTS.  Five days later, I saw a breast surgeon who told me that my right breast is intermediate grade, cribiform, 33% estrogen and 3% progesterone fed.  I have no mass, lump, no tumor.  I have DCIS, localized.  My left breast is 95% estrogen and 75% progesterone fed and is high grade, comedo (multifoci), and localized.  It is DCIS with microinvasion and I also have no mass, lump or tumor, yet it is microinvasion and considered almost Stage 1.  Then I had MRI which showed thickening in the left armpit area. No other hot spots in my left breast and MRI showed residual cancer cells in my right breast.  Next step, having to undergo ultrasound with possible biopsy of the lymph node areas of both armpits.  I freaked of the thought of the lymph node ultrasound because how could DCIS with microinvasion localized spread to lymph node area???  I saw a plastic surgeon the day before my lymph node ultrasound who told me I really don't have cancer.  I was told DCIS was controversial and really known as precancer cells and not technically cancer.  Great!  Awesome!  So, she was telling me I don't have cancer.  Then why the heck am I undergoing ultrasound with possibly biopsy of my lymph nodes and it felt like was I was going from stage 0 to now stage 3 because it could be in my lymph nodes?  When I arrived to the hospital the next day for this lymph node ultrasound, I was ready to bolt out of the ultrasound room and say screw all of this.  I can't handle the emotional roller coaster ride.  If it wasn't for the residual cells still showing up in my right from the breast biopsy, and my husband guarding the exit door of the waiting room, I would have bolted.  In my mind, I picture my precancer cells as evil mean cells who hate each other which is why they will not form a buddy system to cause a lump or mass, and these cells have a mind of their own (comedo) and want to just take off and do their own thing causing microcinvasion.  Thank God as no biopsy was needed for my lymph nodes.  My poor ultrasound tech, I let every emotion out of me and couldn't stop hugging her and was so thankful for no biopsy.  So......why DCIS IN BOTH BREASTS!!!!!  Anyone else have something like this??  I asked my surgeon why both and she said either I have the most dumbest bad luck or it is genetics. 

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  • Jelson
    Jelson Member Posts: 1,535
    edited October 2014

    YIKES!!! While I think it is rare to be diagnosed both breasts simultaneously, it isn't unheard of here. Unfortunately the search function  on the BCO discussion boards is a bit unwieldy. However,  there have been women having chosen to have bilateral mastectomies when diagnosed with DCIS is one breast,  find that the pathology in the supposedly ok breast turns up DCIS and/or problems. 

    When I was diagnosed with DCIS in the left breast, I asked my doctor about the likelihood of finding it in my right breast. He said that it was a definite possibility since it was also exposed to whatever caused it in the left breast. this made sense to me - but it hasn't happened yet.  With regards to having different DCIS in each breast, they are separate primaries - the breast cancer doesn't spread from one breast to the other.  With regards to no mass, lump or tumor. The microcalcifications are the dead cells (I think?) within your milk ducts indicating where the DCIS is scattered - the ducts are like strands of spaghetti and the DCIS is not necessarily confined to one area, it can be here and there along the strands. I actually think a DCIS lump is less common.  You have certainly been through a lot of testing - but it sounds like the DCIS diagnosis for both breasts is holding steady. 

    good luck to you. you will find much support and information here.

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  • Annette47
    Annette47 Member Posts: 957
    edited October 2014

    Just wanted to add that whether or not you consider DCIS to be cancer (I do), if you have a micro-invasion, then you have invasive cancer .... albeit a very, very, tiny amount, but that definitely bumps your diagnosis up to Stage 1A cancer .... even the tiniest amount of invasive cancer trumps the DCIS in terms of seriousness.     It is very rare (my surgeon told me the official stat was <10%, but in her experience more like <5%) for micro-invasion to spread to the lymph nodes, but it can happen, which is why they need to check.     Even if you do (and you have about a 95% chance that you do not) have lymph node spread, that wouldn't necessarily make you stage 3, so try to take a deep breath, and just take one step at a time.

    (((HUGS))) You will get through this.

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  • redsox
    redsox Member Posts: 523
    edited October 2014

    I agree with Annette47 and will say that a plastic surgeon who tells you that you have pre-cancer is an ignorant and dangerous physician. While it is controversial whether some types of DCIS are pre-cancer, pre-invasive or non-invasive cancer, or a number of other terms, DCIS with even a tiny microinvasion is not in the controversial category and should without doubt be considered cancer. 

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  • Ridley
    Ridley Member Posts: 634
    edited October 2014


    sugar -- I had lots of DCIS in the left side, which also had lots of areas of invasive cancer.  On the right side, I only had a small area of DCIS -- so it happens, although bilateral breast cancer does not occur that frequently. 

    Hang in there -- I think most of us feel better, or at least a bit more in control once the surgery is over and we know exactly what we are dealing with.

    Ridley

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  • sugartoes
    sugartoes Member Posts: 39
    edited November 2014

    Thank you everyone for your responses.  I have a wonderful breast surgeon who referred me to the first plastic surgeon who told me I don't have cancer.  I then went and saw a second plastic surgeon last week and she was wonderful.  It was completely a night and day office visit from the first plastic surgeon.  I was 18 years old when I developed a huge mass in my left breast.  At 25 years of age, I had a lumpectomy on my left to remove mass and it was benign.  I had another lumpectomy removed on my left at age 28 and it was benign.  I had 2 cysts drained on my left and one on my right.  I have fibrocystic disease (lumpy breasts) and dense breast tissue. I have faithfully had mammos about every year for the last 25 years.  As of today, I have no mass, lump or tumor where the DCIS was spotted on mammogram and confirmed by stereotatic breast biopsy.  My breasts are junk.  My plastic surgeon could not believe how huge my cysts are and how many lumpy bumpy cysts I have.  Ultrasound shows cysts are plastered in both breasts.  I am having a double breast mastectomy with reconstruction November 12th, 2014.  It might be extreme, but there is also a family history.  I am also going to have genetic testing done soon too.  Thank you again for all your comments and support!  :)

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  • Ridley
    Ridley Member Posts: 634
    edited November 2014


    Sugartoes -- you are the only one that has to live with your body and your decision, so I would not worry about someone else thinking your decision in extreme.  I had what the radiologists called "busy breasts".  After a few conversations with my surgeon and radiologist, I decided that both would go (they recommended one go after my pathology from my lumpectomy came back, and it was my decision to have the other taken as well).  For me personally, I thought it would be the worst of both worlds to go through a mastectomy and recon and then still have to go to be monitored frequently for the other side ("ticking time bombs" and "watching me like a hawk" are two phrases that my surgeon used that still stick in my mind.)   There were lots of other pros and cons that I considered (still have my spreadsheetSillyHeart).

    I know for others the top priority would be to preserve breast tissue.  I totally respect that view, it just wasn't mine.

    Good luck with your surgery.

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  • Jelson
    Jelson Member Posts: 1,535
    edited November 2014

    Sugartoes - 

    I decided on a lumpectomy and don't think your decision to have a bmx is extreme.  I would have more seriously considered it if I had your history of breast issues and if I were currently facing something new (DCIS) to be concerned about in each breast.  glad you like your new PS, I will be thinking about you on Nov 12. Do check in here and of course on the surgery discussion board where they have great tips for prep and follow-up for BMX. 

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  • april485
    april485 Member Posts: 3,257
    edited November 2014

    My understanding is that DCIS IS malignancy that has not morphed the last phase where it invades breast tissue. The argument that it is pre-cancer frankly drives me bonkers. It is PRE-INVASIVE cancer. But, the fact that it is malignant means it is cancerous cells.

    Although I had a lumpectomy, if I were in your shoes, I would make the same decision as you have. I have not a doubt in the world about that. I wish you the best with your upcoming surgery and glad that you found a doctor you can have faith in. Hugs!

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  • sugartoes
    sugartoes Member Posts: 39
    edited November 2014

    I had my double breast mastectomy with expanders placed on Nov. 12th. I found out I have shingles. I developed a blister in my back and thought it was an allergic reaction from tape and then that night?? I was in extreme pain where I begged my husband to call 9-1-1. I felt like a burned victim. A friend of mine who is an RN looked at it and thought it might be shingles. I saw doctor and it could be and so I am being treated for shingles, 4 days after my mastectomy.

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  • Ariom
    Ariom Member Posts: 6,197
    edited November 2014

    Awww, Sugartoes, I am so sorry to hear what has happened to you. I have had both, Shingles and a Mx, but not together and I can just imagine, how uncomfortable and frustrated you must be.

    I hope it passes quickly for you! Gentle hugs!


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  • Morwenna
    Morwenna Member Posts: 1,063
    edited November 2014

    I think you were wise to have the bilateral mastectomy.

    I started out with the same diagnosis as you (in the one breast only): dcis with microinvasion. The original tumour was thought to be about 3cm. Eventually, after my 8cm lumpectomy, they found positive margins at both extremes, plus a macrometastasis in a sentinel node! I was advised immediate Mx on that side, then had 6 months chemo plus rads.

    I am booked for a prophylactic right mastectomy and bilateral reconstruction Jan 6. Although nothing is showing up in my fibrocystic right breast, imaging didn't show most of the cancer in the left, so I'll be pleased to have them both gone!

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