DCIS two tumors in different quadrants

Unfortunately, I know all too much about multicentric DCIS.

All the following is my opinion only: 

Absolutely have a second opinion before you make a decision like this.  Get as many opinions as you need to be comfortable with your final decision.  Have the slides re-examined by another pathology lab, all the radiology films given a second look too. 

And have the BRCA test done.  

If your margins are not clear, most would recommend a re-excision at minimum.  And, once it's determined that you have multicentric disease, mastectomy is the standard of care.   

It's possible that you could "get away" with re-excisions if you got clean margins, followed by radiation and maybe Tamoxifen (you haven't said if you're ER/PR positive). 

Or, if you have large breasts, they might be able to do a bit of a 'boob job' and remove a larger area, reduce/lift your breast, and remove/re-attach your nipple in a different/higher position.  You'd probably have to do the other breast as well, to match.  (This is what I did, the way I escaped mastectomy - which I just wasn't emotionally prepared to do.  And I saw a LOT of surgeons before this option was put on the table.)

The standard of care IS mastectomy, and some surgeons will flat out refuse to do anything less.  Some surgeons will try to offer alternatives.  Whether or not doing less than mastectomy is reasonable, in my opinion, depends on your breast size, the location of the DCIS, the aggrressiveness of the DCIS, the size of the DCIS - all the stuff described in your path report - and your BRCA results.

If you don't have a mastectomy, the tradeoff for keeping your breasts will be accepting a higher recurrence risk.   I have no idea what that percentage would be for you, you really need to consult with your physicians - and I'd recommend talking to a medical oncologist specializing in BC in addition to a surgeon, and maybe also a radiation oncologist.  And also talk to plastic surgeons about your recon options.  Unfortunately, you'll probably be talking to a boatload of Drs in the next few weeks.

I also think it's normal to be scared by the recon pictures. We've all probably had that reaction, I know I did.

I was BRCA- and I don't have kids.  It was easier for me to accept a recurrence risk than it might be for you. 

On the other hand, your DCIS is grade 1 (not very aggressive), but your BRCA is unknown.

It's a lot of tests to take, a big learning curve, and extremely upsetting (to say the least) - but you had the majority of it removed and apparently it's all DCIS.  You do have to deal with this, but it's not an emergency.  You can take your time coming to a decision. 

If you want to/can travel to a city with an NCI designated cancer center, there are often places where you can stay for free, and I think you can get one free roundtrip flight per year (both thru the Amer Cancer Society, if I'm remembering correctly - if this is something you're interested in I'm sure the women on this site will be able to help point you in the right direction, but you might take a look at the ACS website for info and links.) 

I'm deeply sorry you have to go through this, and wish you all the best. 

Barbara,

They told me I needed a mastectomy too, three years ago, after the margins from my lumpectomy were not clear either.

I had my pathology reviewed by Dr. Michael Lagios, a world renowned DCIS expert and pathologist, who has a consultation service that anyone can use. He disagreed with my local pathologist, and said that not only did I not need a mastectomy, but I could also omit radiation and tamoxifen.

Since all fuutre treatments are based on your patholgoy, I would strongly recommend at least getting a 2nd pathology opinion, especially since many times pathologists disagree with each other.

Although many women choose a mastectomy for DCIS, there is a still a small chance that you can have a recurrence even if you opt for that.

Since with DCIS, you can wait several months if needed, take whatever time you need making your decision. No matter what, you need to be comfortable with whatever you choose.

If you would like to contact Dr. Lagios for a review of your pathology, you can find info about him at:

http://www.breastcancerconsultdr.com/

You can also send me a private message if you would like more information. I will be happy to help you in any way I can.

Best wishes,

Sandie

Sorry you've ended up here!

 Many people believe there are genetic factors in breast cancer that the BRAC tests don't measure. Has your mother had breast cancer as well?  With a sister who had it at 39 and several Aunts I think you have good reasons to be thinking that a bilateral would give you more peace of mind.

I think in terms of reconstruction that women are happier with their symmetry when they have both side done. But, losing a breast is a big deal. They're erogeneous zones and losing them is significant. If you think you don't want to take such dramatic action you could always have the one side removed. You'll be closely monitored and if after a few years you're still unhappy and worried you could have the other one removed later.

 It's pretty easy to have your slides sent off for a second pathology opinion, if you think you want to do that I would go ahead and do so. I think a mastectomy for DCIS in two different spots is pretty standard treatment. I don't know that I'd think a second opinion from a reputatible surgeon would be any different.  Sometimes if a woman is really large-chested they can do two different spots. At a minimum they'll be removing a golf-ball sized chunk. That could leave you looking a bit deformed and make a mastectomy with reconstruction more palitiable.

I also had multifocal DCIS - mine was multifocal in the right upper outer quadrant however so I can't comment about 2 different quadrants.  My mammo showed 2 areas of microcysts (0.7cm , 0.3cm) the radiologist was not concerned about (ended up being DCIS of course!) and then I had an 8 cm area pop up on MRI (on my path they found 4 more spots of small DCIS (<0.5cm in this area).  Due to my age, my multifocality and my family history (pat aunt 28 yo at dx, 3 pat great aunts dx post menopausal) as well as my ER/PR status (-) I chose to do a bilateral although my BS thought I should just do the one and have closer monitoring of the left.  

My issue with that was I felt like I lost confidence in the screening process since I had to self refer to a BS in the first place to request the original biopsy of the microcysts (that everyone told me were nothing but then ended up being DCIS which then triggered the MRI that found all the other bad areas).  It would have been great to keep one of my breasts if I had felt comfortable enough to follow a watchful waiting plan.  For me I just felt at my age (35) it had to be at least partially genetic and with so many different spots of it I felt like it was just a matter of time before I got something bad in the left too.  And I chose a TRAM flap reconstruction which is a one time and you are done method since they cut off my "mommy tummy" and put it in my boobs - I was not aware that if I had kept the left breast there are surgeons out there who could have taken a flap from somewhere else on my body if I had needed another flap reconstruction later.  

Looking back though, I still feel like I made the best decision for me that I could at the time with the information I had.  This is in no way to suggest that you should follow in my footsteps however since this is an intensely personal decision.

I guess your decision will be partially about what is medically correct (which you may or may not be given the option of mastectomy vs lumpectomy x 2) and also partially about what your goals are.  For instance, I could see how a single woman who is on the dating scene or someone who derives lot of sexual pleasure from her breasts could easily (and rightly, for them) choose differently than I did.  Or if you want to have another child and breast feed I could see how that would lead someone to a different path.  There are some women who just could not emotionally stand the thought of removing their breast (s) and that is reason enough too.  You should know if your BS and onc haven't told you though that the BMX doesn't cut your risk of breast cancer to 0% - more to like 1-2% lifetime risk of recurrence as they can't ensure that they get every last breast cell out of there.

Almost 8 weeks after having mine taken off I can say there are moments (short ones albeit) I forget that it has happened.  I looked at "before" photos of me for the first time this weekend and seeing my nipples I was like "of course that is how I look" - and it is how I think of myself in my mind's eye.  What is there now however is very different - (and I am having some pretty significant post op complications of skin necrosis, etc) so am still a long way from being recovered.

Anyway, as others have suggested, definitely get a 2nd opinion, and maybe even a 3rd before you do anything else.  If you decide to go with the bilateral, interview several PS beforehand - I have found that an individual PS will only tell you about procedures that they can do not all the options that are out there.  Good luck - you will get through this!

Good luck with your consult in SLC.  I too, had multi-focal DCIS.  Mine was fairly extensive and there were other areas of concern (calcifications) on my mammo.  I met with 2 surgeons and both would only do a Mastectomy.  I opted for a unilateral.  It was a difficult decision.  My child was four at the time, and I was glad that I had mobility and no pain on my good side.

This may be helpful.  It is a personal decison, listen to your gut.

http://community.breastcancer.org/forum/44/topic/708419?page=3#idx_89