DCIS discovered incidental to breast reduction

j_self

hi, newbie to the boards here. 

My story starts with deciding after many years to have a breast reduction surgery (for back/neck/shoulder pain + numbness), which happened mid August. Prior to surgery, had mammo that was clear. At 2nd follow up 2 weeks later with the PS, he told me the pathology was showing "in situ breast disease" but he didn't have the full report, and it was probably no big deal; that i'd probably end up taking some pill for a while.  Then he got me an immediate appointment with a breast surgeon for right after labor day.  Still no final path report available at the appt, but the preliminary showed grade 2 w/necrosis.  So she talked in general terms about options: mastecotomy, radiation, aromotose inhibitors, and suggested genetic counseling due to family history.  Gave me a script for bilaterial diagnsotic mammo and breast MRI (which had to wait till november to allow for healing from the breast surgery)

A week later, i had the final path report:

right breast, DCIS stage Tis; grade 3 (not 2) with comedo + necrosis, ER+(90%); PR+(only 1%); HER 3+, Ki 15%; 0.6 cm single lesion. Left breast no findings.  margins could not be assessed, nor could location in the breast.  I'm 61 yo.  

BS left message saying hormone report was "good", when i called her back to get more interpretation on the grade and HER3+ she said until imaging was done, she really couldn't say anything re potential treatments, that difference btw grade 2 and 3 was not that important, and i really needed to wait unless i was wanted to go right to bilateral mastecomy.  kinda took me aback.  

BrCa came back 'no mutations identified' 

In the interim, i have been reading lots and trying to figure out my 'what-ifs'.  I will have the diagnostic mammo this coming friday (11/2), breast MRI Monday (11/5) and meet with the BS on 11/7.  I can feel my anxiety growing daily.  

I understand my goals of treatment are really reduction of risk of recurrence  but I am scared of side effects of the AI's, especially in terms of joint and related pain, and potential for fractures (having broken 5 bones in my feet over a 3 year period a while back).  Not sure what radiation would do to currently healing breasts, or if it would make the one breast look different from the other? Considering bilateral mx which seems so drastic given stage 0, 1 small lesion, but more attractive to me than 5 years of drug with potential nasty side effects....    without a margin to assess, i feel like i have fewer signposts to advise my decision making....

Is there anyone on the boards who had their bc diagnosed as an incidental finding to breast reduction?   would love to hear your experiences, advice, comments.  

thanks

Janet456

Hi

My DCIS was picked up as an incidental finding.  I had clear margins so no further treatment was deemed necessary for me.  xx

starwoman

Hi

I had a pathology finding of left breast grade 3 dcis with comedo necrosis, 1 cm, following reduction in July 2011 (didn't show up on pre-reduction mammogram).   After further scans (mammogram, mri) and second opinions on the pathology, the advice was that it had all been removed but, since margin status was unknown, either radiotherapy or mastectomy would be appropriate.

I initially opted for radiation but, because of a rare post-reduction complication (months of evolving fat necrosis, inflammation and infection - both breasts), eventually had a left mastectomy in February 2012.   The pathology was thankfully clear.

I have no regrets about the mastectomy (no recon) and, in retrospect, am glad to have avoided radiation.   I discussed bmx but my surgeon discouraged me - I'm okay with umx but now know I would have been okay with bmx too.   I'd have a second mastectomy if the slightest question arises about the health of the right breast and I know I'd be fine with it.  I may even consider asking for a prophylactic mx but I'm not sure at the moment.  I was 58 having the surgeries.

Tamoxifen was discussed but I wasn't keen for other health reasons and my BS agreed that it would not provide a large degree of risk reduction for me.

I am very grateful this high grade DCIS was discovered when it was and, despite the reduction outcome not being what I hoped for, I still love the disappearance of shoulder and back pain and my posture has improved.   I've looked at recon options but current methods aren't for me and I don't think I look that bad, actually a lot better than before reduction!

I hope your consult with your BS went okay - as many others have said, it's very hard when you're in the middle of the decision-making process and much easier once you're on the other side.  Wishing you all the best as you move ahead with your decisions.

j_self

Starwoman, thank you so much for posting.  You're the first person I've heard of who has been in anything close to my position -- it's been hard to figure how my findings fit into the "normal" decision making points. Everything I read seems to say margins are everything, so without them it seems like real guess work. 

Appointment wth the BS this week had to be postponed; diagnostic mammo last Friday found some "areas of concern" in right breast (scattered calcifications), so now I am scheduled for a biopsy next Tuesday. (yes, anxiety rising again, which has been my continuous state of being since before Labor Day).  At least the MRI done this past Monday came back negative for malignancy in both breasts  - a bit of good news.  Once the pathology from biopsy is in, then will see the BS and see what the recommendations are.     Probably won't have anything definitive till the week of Thanksgiving.  So I have to wait some more; had so hoped to have some direction this week. 

Being in this limbo has been trying. It's a help to have heard your voice and experience.  I'm holding on to the advice that once decisions can be made, it gets a bit easier....  looking forward to that time!

thx -j

cinnamonsmiles

I am glad you found someone to relate to j self and I am sorry you are hanging there waiting to find out what your treatments will be. Once you get a treatment plan the stress of the unknown will lighten up. Keep letting us know how you are doing or helping you!!!

I am interested in knowing why they tested you for HER2, and since you are positive, what do they plan on doing about that? I think testing for Her2 with DCIS is new and controversial. I'd like to know what they are telling about that?

j_self

Hi Cinnamonsmile

thanks for posting again.  

I'm not sure why they tested for HER2, it was just one of the factors that was reported in the final pathology report.  When I asked the BS, she seemed to think it wasn't that important given the other factors (stage, 1 lesion, small) but thats said if i spoke with a medical oncologist they might want to treat me with Herceptin to be overly cautious- she clearly thought it would be over treatment. She kinda put it that the stage (Tis/stage 0) would "trump" the pathological report (including the grade 3/comedo/necrosis result).  I'm not so sure, but am waiting to get all tests/results.  Would be more than happy not to have to take herceptin treatment.  Am assuming we will cover all these questions again once we meet with her, and will probably be getting 2nd opinion on treatment options b/c of the weirdness of my situation.

the hub tells me i've been dealing pretty well overall with the waiting, expect for occasional bouts of freaking out (evidenced by - as he put it "taking it out the people around me" (meaning him, of course).  he's been rock solid these past few months for me, i'm very lucky in that sense.  keeping busy helps, too.

take care

starwoman

Hi j self

It's certainly hard to hold onto calm at times, especially when waiting for various tests and results - sounds like you are trying to focus on what works for you.  I had to remind myself to breathe from time to time!  I found that researching (academic sudies as well as dr google) and reading about the experiences of others, especially on this excellent site, was a mixed blessing in the early weeks and months - a rich source of good information that I gratefully devoured and that sometimes tipped into information (and emotion) overload.  

You have a lot to take in - and sorry you're having to wait some more - but once results and recommendations from your medical team are in and you know what the risk reduction figures are for you, the picture will clear a bit.  And then you have the option of seeking a second opinion, as you say, if that would be helpful.

Looking back, when I was offered the options of radiotherapy or mx, and chose radiotherapy, I realise I was strongly focused on keeping my breast, having gone through the reduction surgery, which is major as you know and a decision not made lightly.   And scared at the prospect of mx.   And struggling to heal with the post-reduction complications I developed (a year of antibiotic treatment, oral and iv, and several months of wound vac - the physical healing from the mx was problem-free and a breeze compared to that). 

I remember reading that Wanda Sykes had had a bmx following a reduction last year round about the time I was newly diagnosed and it helped to know that, while uncommon, I wasn't alone with a post-reduction finding of cancer.

Go well.

j_self

hi all

so I think the testing phase is finally over: the dx mammogram showed calcifications, which upon biopsy were negative/benign, and the MRI showed no evidence of invasive disease or additional DCIS in either breast. family history but BrCa negative.   I am scheduled to meet with the BS next Tuesday and want to spend sometime over the Thanksgiving holiday getting my questions set.  Would appreciate your collective wisdom in what I should be asking, given my unique path to diagnosis.   It seems from what I've read that all the usual treatments (rads, HT, umx or bmx)  still remain on the table.  I am even considering watchful waiting at this point but that may just be wishful thinking...   The key question of course will be best estimate of risk of recurrence without margins to assess.  The Hopkins ask the expert says standard of care in this case would be mx.  seems aggressive for .6 cm single focus without any additional evidence of disease... any thoughts/comments/suggestions?

thanks so much 

starwoman

hi j self

Just wondering how things have been going for you - I'd be interested to hear how the discussion with your BS went.  Hope the way forward clarified for you.

j_self

Hi Starwoman- thanks for asking about me

I've seen a lot of docs in the past few weeks: after the BS, went to rad onc; then talked to primary, then also talked to nurse navigator (the latter two really wanted me to see med onc, so I did that too) , then saw my plastic surgeon.  BS just laid out all potential options, recommended none in particular (ie, "all these would be appropriate"); I gave very serious consideration to bilateral mx (that recurrence rate was attractive to me, despite the surgeries).  Primary wasn't happy with thought of bmx but would have supported; BS then took to conference and sent me a very odd /abrupt note about how they think i my "DCIS is likely 'treated' " (those were her exact words)  but that i should do aromatase inhibitor (no mention of rads, but she clarified that they were 'implied').   

upshot is   after talking to med onc, decided to go with rads + tamoxifen.  med onc said that even if i had mx, given >90% ER+ she would want me on HT.   Planning CT this week, start rads with the new year, start tam in mid feb.

So, as my mind views it currently, I have "named my poison".  not yet feeling the 'relief' that people say comes with decision making....am slowly coming to terms with this need for treatment, and decision to go with this particiular set. i know many others have worse case than me but still feel that by the time i found out there was any bc, i was already NED and  am being asked to treat as if invasive disease-   not at all logical, i know; i do understand the treatments are to avoid recurrence.  so working on my attitude adjustment (from " i have named my poison(s)" to "this is necessary/preventive"). logic and emotion are taking turns....

starwoman

That's a good way of describing it - logic and emotion alternating.   Thanks for your update and wishing you a smooth path now with radiation and tamoxifen.

And all the best with your ongoing attitude adjustment!   I can relate to that and also try to practice knowing that resisting what is causes me more suffering but also use repression, gratitude, wine and other methods as needed!