4.4 cm of microcalcs and DCIS diagnosis-2nd opinion anxiety!

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Rosamond
Rosamond Member Posts: 114
edited June 2014 in DCIS (Ductal Carcinoma In Situ)

First surgeon said there was about a 2.5 inch area to remove in the upper/outer quadrant of right breast through lumpectomy and then follow up with rads and tamoxifen.She is a well regarded, dedicated breast surgeon at a major Chicago suburban breast center. Said MRI would not yield any more useful info for her.



Decided to seek 2nd opinion at major university national cancer center hospital. Got a call today from nurse telling me that their radiologists see another suspicious area of "oval asymmetry in posterior lateral right breast, next to pectoralis muscle, which may represent involvement in intramammary lymph node." Getting an ultrasound before my scheduled 2nd opinion surgery consult on this new area, which is small-4mm. This surgeon also wants an MRI for the micro-calls/DCIS, which she listed as a 4.4cm area.



Questions...

- if there is something in the lymph node, would it likely be invasive?

- if it is invasive, it might mean DCIS plus an invasive area?

- is the 4.4 cm area definitely DCIS if it is all micro-calcs, or could it be micro-calcs with smaller amount of DCIS contained within...like 2cm of DCIS and additional micro-calcs that just need to be removed because of suspicion?



I am anxious about the lymph node thing and hope it's a benign issue that is just being flagged because the university radiologists are aggressively looking over everything because this is a 2nd opinion situation at a major national cancer center. Also...still hoping for a lumpectomy but the extent of the micro-calcs may mean a unilateral mastectomy...(sigh).



Why would one surgeon want an MRI and the other not for micro-calcifications? Her nurse said she wants to have a better handle on the "extent of the disease." I hate thinking of myself with a disease when I am otherwise healthy, have eaten a primarily plant-based diet since I was 15, was never a smoker/drinker, breastfed continuously for over 3yrs, didn't get my period until I was 15, no cancer in the family...but that's the way it goes! By the way, I got this diagnosis days after my 49th birthday, in the midst of being a finalist for a wonderful promotion that I pulled myself out of the running for due to my unwelcome news.



Any comments appreciated, thanks, and all the best to everyone out here!

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  • ballet12
    ballet12 Member Posts: 981
    edited July 2013

    Wow. Sorry you are going through this, and sorry you pulled yourself out of the running for the promotion. It's understandable.

    1.) Lymph node--if there is cancer in the lymph node then it is invasive, but as you said, sometimes they see things on imaging which turn out to be benign.

    2.) They can actually biopsy inframmary nodes, if necessary.  As to whether anything else would be invasive, unless they found something else in your original biopsy, the invasive question would await the lumpectomy or mastectomy.

    3.) It's very hard for them to determine the full extent of DCIS from imaging.  Only the pathology from the surgery will tell you the extent of the DCIS.  In my case, it was much more than the microcalcs that were visible on imaging. They can't actually always "see" the DCIS on the mammmo/ultrasound imaging, only the clustered microcalcs in the area. Sometimes DCIS is visible on MRI, but not in my case.

    4.) I had over 5 cm of DCIS, multifocal, and I still did the lumpectomy.  It depends on the size of the breast and the location of the pathology in the breast, and how much you want to risk a cosmetic defect to the breast. If it's widespread and scattered or multicentric (more than one location), it's usually not possible to go with the lumpectomy.  The MRI might help you with your decision, but MRI's are notorious for finding more false positives that need to be checked out.  I think you have a good understanding of this.

    5.) Best wishes to you.

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  • Rosamond
    Rosamond Member Posts: 114
    edited July 2013

    ballet12,



    The ultrasound was benign-just an intramammary node. Phew.



    I decided to go with the MRI as I am relatively young (49) and the path report was a little odd-the section from my biopsy with the microcalcifications had no DCIS, while the section without microcalcs had the DCIS. The new surgeon suspects there could be much more...or, she said, maybe even much less, so the MRI will add additional info into deciding between a lumpectomy or, as proposed, a skin and nipple sparing mastectomy with implant.



    One decision I feel really good about making today, other than to risk false positives with the MRI (and we are doing it between days 7-10 of my period to reduce some of that), is the choice I made to move my care to the University of Chicago, where this second opinion took place. I love the surgeon and I like her resident and the team is great. Best bedside manners and an amazing breast center within a comprehensive cancer facility. Felt very taken care of there...so I know they will do their best to try and make sure that I have one surgery and be done. I will need a sentinel node biopsy if i have a mastectomy, and she said my lymphedema risk would be very low-so much so that she normally doesn't advise precautions (although I think I would still be cognizant of them :-)



    She also said, pending the MRI, that I may be a good candidate for a delayed surgery in order to participate in a green tea extract study to see if it reduces proliferation. I loved the fact that a National Cancer Institute is giving serious consideration to a nutritional treatment!



    So, lots ahead still in my journey, but feeling good today...and relieved that the ultrasound was benign as well as to now have chosen a treatment team and facility.



    Thanks for your help and thoughts!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2013

    great news about the benign node, and so glad you found a doctor/medical team you feel good about, that's important.  I hadn't heard about the green tea reducing proliferation. I hope so, I drink a ton of it!

    anne

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  • Rosamond
    Rosamond Member Posts: 114
    edited July 2013

    Thanks and keep drinking the green tea. If it doesn't help our BC directly, I know it helps us in other ways by boosting our immune system and cardiac health. I like the taste, too!

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  • ballet12
    ballet12 Member Posts: 981
    edited July 2013

    Hi Rosamond:

    1.)Glad that the inframammary node wasn't seen as a problem (sometimes they can be).

    2.)MRI is an important next step, but it can be tricky.  Hopefully it will help clarify the surgical decision.

    3.) Microcalcs and DCIS are often seen next to each other or mixed in with each other, but not always.  The microcalcs are a marker that there is a lot of activity in the area (it's calcium deposits, I believe).  As I said, I had much more DCIS than showed on the initial imaging.  I guess what your surgeon is saying is that if DCIS is found where there are no microcalcs, then there could be a lot more there that never showed on imaging (or even a lot less).  Anyway, if it turns out to be around the 4.4 cm, you might be able to still get away with a lumpectomy like I did.  If the MRI suggests much more, you may not be able to. 

    4.) I switched from a general surgeon and a well-known suburban teaching hospital to Memorial Sloan Kettering, so I know exactly how you feel.  I had actually used that general surgeon (who does many breast surgeries) for 17 years, but when I went to MSKCC, I knew I was in the right place.  The surgeon is a specialist in DCIS. The team has been very thorough and the entire place is geared to making cancer patients feel well cared for. Even their mammography equipment seems light years ahead of the equipment at the other hospital.  As I move into the "survivorship" phase, I will be followed more by nurse practitioners, but that's OK as well. 

    Best of luck and keep us updated on your progress.

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  • CTMOM1234
    CTMOM1234 Member Posts: 633
    edited July 2013

    Rosamond - Wonderful news about the benign node and wishing you the same outcome from the MRI. This is an important time to get as much information as possible so that you, in consult with your doctor(s), may make an educated decision and have good inner peace. 

    I was in my early 40s when a routine mammogram showed first-ever micro-calcifications; a stereo biopsy confirmed grade 2 dcis. You sound a lot like me (no family history or known risk factors: no smoking, no drinking, no caffeine, no birth control/hormone meds, like you also no period until nearly 16, no red meat. exercise, slim, nursed my twins) --  just one of those things. I underwent genetic testing, ultrasound, and MRI testing, and although the MRI did lead to a false positive and my undergoing an MRI-led biopsy, all of this information helped me decide on the right surgery (I was considering bmx, mx, and lump.).

    The green tea study sounds quite interesting, although I do not know if I would have wanted to delay my surgery. You may hear it stated that with dcis there is no worry whatsoever about delaying treatment, because the cancer cells are contained in the duct. That is true...if it is pure dcis. One does not truly know that until the full pathology report is run post-surgery. As you will see by my signature, despite all those pre-op tests, and everything going "as expected" during my lump.surgery to remove ~3 cm of grade 2 dcis, a surprise bit of idc showed up in the final path. analysis -- no other time before that ... again, just one of those things, against the odds. It happens and it didn't change my treatment plan but time suddenly felt like an issue to me.

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  • Rosamond
    Rosamond Member Posts: 114
    edited July 2013

    CTMOM1234,



    Point well taken. I think the delay would only be 4 weeks, and I may not qualify for the study, anyway. Both of the surgeons I consulted with said that early cancer, even if invasive, is rarely an emergency and that delaying surgery for a few weeks (or even months if, as you say, it's pure DCIS) is not dangerous to do and can help with treatment and recovery as there is time to explore options and research. I was diagnosed 4 weeks ago and will have the MRI next week. So, surgery could be as early as 6 weeks after diagnosis or as late as 10-12 weeks. I expect it will be done by mid- or late-September at the latest. Being an elementary principal, this is also not a bad thing as it will improve my stress level considerably post-surgery if I am able to get things prepared and the stage set for the school year. I also went into "surgery training" mode as soon as I got the diagnosis-kicked up all the organic leafy greens, protein, vitamin D3 (had my primary doc run a blood test and not a surprise-deficiency!-taking 10,000 i.u./day currently, then down to 5,000 i.u./day), seaweed for iodine, fish oil, calcium/mag, flax seed, vitamin C. replaced coffee with green tea, avoiding wheat and dairy and eliminated sugar. I want to be ready to heal and support my immune system post-surgery. Also, with the emotional roller coaster, the clean eating is helping me to keep my energy levels high and my seasonal allergies stopped being so bad. I've lost a few pounds, too!



    I am sorry about the invasive aspect to yours-you are right, one surprise after another!! I did take b.c. pills on and off for 15 years, ending over 10 years ago. That and the fact that I had my first child over 40 were the only risk factors...except for dense, fibrocystic breasts. Glad to hear that all has gone well for you! Thanks for the info and sharing your story.

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  • LAstar
    LAstar Member Posts: 1,574
    edited July 2013

    I just want to encourage you not to have any nodes taken if you can help it. I had two nodes taken at my MX and was told that the risk is very low, but I have experienced early lymphedema signs. I wear a sleeve when I exercise or need to lift something and use massage. My arm gets very sore if I get a bug bite or even a hang nail on that side. They can find your lymph node during surgery and leave titanium markers around it so that the sentinel nodes can be located later if an invasive component is found. The lymph system is complex and important. If you have pure dcis, there is no reason to take a node and deal with this for a lifetime. I wish I had not! Best wishes!!

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  • ballet12
    ballet12 Member Posts: 981
    edited July 2013

    Interesting point, LAStar.  I'll remember that if I ever need it (hopefully never).

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  • Rosamond
    Rosamond Member Posts: 114
    edited July 2013

    Thank you, LAstar. I will definitely ask about your suggestion.

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