about to go crazy over this contralateral breast decision

A medical oncologist is actually the better doctor to talk to about the risk level of your other breast.

Surgeons do surgery.  That is their expertise.  The role of the medical oncologist is to look at the whole patient and the whole range of possible treatments.  And that includes looking at the risk to your other breast, and what the possible treatment options are for that.  The MO probably won't tell you what to do - he or she is unlikely to make a recommendation (although you never know) - but he or she should be able to give you a good idea of what the risk level is for your other breast, and that can help lead you to your decision. 

nesw - Your dx, does in fact, sound complicated. And no wonder it's driving you bonkers trying to make good decisions with constantly changing information.

My original diagnosis was DCIS, but after 7 diagnostic procedures, the last two found two microinvasions of IDC - invasive ductal cancer. It was hidden by the DCIS.

The IDC tumors were VERY tiny: 1.5 mm (half a grain of rice) and 0.5 mm (a grain of salt); but there they were.

I was offered a lumpectomy with radiation, but the BS told me in order to get all the areas of DCIS and IDC, she would have to take a large wedge of tissue, deforming the breast. She suggested UMX.

Well, back then, my Original Girls were huge - 38DDD, and they were heavy, dense, and fibrocystic. They hung nearly to my waist and felt like bags of rocks, making self-exams almost impossible.

My mom was dx'd with BC at the same age I was (60) and she had a UMX with no recon, and no further treatment. I wish I had known more about the details of her dx, but back then, the docs probably didn't know, either. She passed at the age of 87, of unrelated causes. Never had any recurrence of the cancer.

Anyway, I'd been getting mammograms for the past 20 years, and each time, I'd think....is this it? Will this be the year? My PCP refused to order ultrasounds or MRIs for my dense breast tissue, saying they were not "screening tools"...

I finally had bleeding from my left nipple, which led to the referral to the BS to rule out a papilloma, and eventually my decision to have a BMX with immediate recon in the way of tissue expanders. 

I knew that the extensive work they would have to do on the right would be just as invasive as a MX, and I'd still have to worry every time I had a mammogram. (The Radiologist was sure there was more to be found on the right.) Plus, I didn't think they'd be able to match the sizes very well, although other women have had great results.

I had my BMX in December a year ago. I was fortunate. There was no other cancer discovered; the margins were clear, and there was no lymph node involvement...so no chemo, no rads.

In August, I had my exchange to permanent saline implants. I know there is no such thing as being "cured" of cancer, but my decision to have the most extensive surgery, coupled with my taking Arimidex for  the next 5 years, has brought my risk of recurrence down to less than 1%. I can live with that.

I hope you find the experts and the resources you need to make a decision that will bring you peace.

I had a really difficult time with this too, and I don't think its right that the bs is not even allowed to give an opinion. Only after I made the decision for bmx did she finally say "I think that's the best way".

I am in total agreement with Beesie on this one. When I met with the individual doctors on my team, each and every one said that there were a number of options open to me, but there was no one "right" answer. The final decision was mine to make. My BS did double, triple, quadruple check to make sure I was absolutely certain about my decision.



No one pressured me one way or another, and all gave me time, space, and as many questions answered as I needed. In the end, they all agreed I made the best decision, because that was the decision that was right for me.



Lizzie

Whether your three separate regions of DCIS are from the same primary or separate primaries is determined by how similar the pathology of each region is.  Regions from the same primary will have similar (although not necessarily identical) pathology while the pathologies of those from separate primaries are likely to differ much more.  

DCIS cells can travel along the ducts and leave gaps along the travel route with no tumor, so you can have separate regions from the same tumor.  Short distance travel is more likely than longer distance travel.  When regions are short distances apart, doctors will assume that they are likely to be from a single primary.  If the regions are a large distance apart, they will assume that they most likely came from separate primaries.  Those assumptions are not sure bets but are consistent with the probabilities. 

It sounds as though your discussion with the MO really helped clarify your decision.  I'm so glad to hear that!  

It's such a difficult decision.  I'm sure you feel quite relieved to have the decision made and to be confident that it's the right thing for you do.  Now you just have to figure out when this is going to happen!

news, the fact that your have an HER2+ microinvasion in your right breast doesn't have any impact on what might happen to your left breast. That's why the tumor board came back with the "wait and see" recommendation.  The fact that you've been diagnosed with BC in your right breast factors into the risk equation for your left breast; it does increase your risk. Anyone who's been diagnosed with BC one time is considered to be higher risk to be diagnosed again. But the biology of the cancer - the fact that it's HER2+ - isn't a factor.  To my understanding, it's only ILC that presents a greater likelihood of occurring in both breasts. 

If you were to develop BC in your left breast, biologically it could be completely different than your current diagnosis.  Having one HER2+ BC doesn't mean that if you were to develop BC again, it would also be HER2+.  Since most BC is HER2-, it's quite possible that another diagnosis would be HER2-.  The two diagnoses would be completely unrelated.

I'm sure you realize this but there is one other thing that I want to clarify.  You say "To me, if all breast tissue is removed now, there is no concern remaining for a HER2+ invasion down the road."  Having BMX does significantly reduce your risk of recurrence and your risk of developing a new primary BC, but it does not eliminate that risk completely. With a BMX, there will always been a bit of breast tissue left, whether it's scrapings against the skin or the chest wall, or a small amount under your arm, etc.. Approx. 1% - 2% of women who have BMXs still develop a local recurrence or a new primary.  So a BMX is a good way to get your risk to the lowest level possible, but unfortunately there is nothing that any of us can do to completely eliminate our breast cancer risk.