Who else had Bilateral BC at time of diagnosis?

Just an update --I posted earlier, before my surgery, that I too had bilateral BC, the 2nd breast diagnosed one week after the first by pre-op MRI that my BS always orders for her pts.

I saw my BS last week for a follow-up and she said she had recently caused a stir when she presented my case to a group of physicians. Apparently, pre-op MRIs are NOT the standard of care. Many surgeons think they are not cost effective and do not order them to check out the healthy breast. My 2nd breast tumor was not seen on either diagnostic mammo or US that had just been done. 

I had no idea that this is not done routinely, and am so thankful for my thorough BS!! I feel certain that she saved my life by doing this MRI, because I feel that the 2nd tumor would most likely have not been found until at least a year later, with a potential worse outcome.

I too am BRCA negative, Oncotypes were both low so no chemo. Had BMX with DIEP, and doing Arimidex for 5 years. 

It is still such a puzzle to me that I grew these tumors in both breasts simultaneously. 

Beckers--Just started Arimidex one week ago, so far, so good. (I almost hate to type that. I'm waiting for the other shoe to drop )

I have a friend who is on her 4th hormone therapy drug due to side effects. Hoping I do OK on it because my Onc thinks it is more effective than Tamoxifen. 

Just went back to work today on partial hours after my bil DIEP. PS says his nurses always stay off work for 8 weeks. I have t admit, I was beat after 5 hours. 

Yo Softball...me too!  Same exact.  One biopsy (IDC) was enough for me.  When they took both breasts to the lab, they found the "lesions" on the other side were invasive ILC.  I've read it's called sychronous bilateral bc.  I'm guessing it's a lot more common than they think.  I was surprised that I could be growing two different types.  I'm very lucky that my intuition pointed to the bilateral approach!  Nice to hear from you.  And best.

Hello ladies. I think you are all right, it has to be more common then thought. After all, I know I always got a sit in almost the same spot on both sides if my face, more often than not. Not exactly the same spot, but nearby mirror image. So I was even more convinced to do s BMX, and of course lucky as that's where they found IDC.

Just a thought for you ladies, this thread isn't one that moves very fast. So if you want to connect with more people. Check out some others. Try triple + if you are or one of the other threads that fit your Dx. A fun one is what's for dinner. But that one just flies. Also, try the thread that has your tx on it, such as the TCH board. Also a good one is if you are doing RADS, or chemo,.look for one that starts the month you are starting. Everyone will be going through the same things as you are at the same time. The treatment (tx) ones, will have people at various stages of tx, so there will be guides as to what they faced. Hope that helps you connect with support. Much love.

Hi Sheribell! Had mammo the year before and looked ok. But they never did see my left breast tumor till surgical pathology. so, you play the hand you get dealt. much love.

Have any of you gotten a clear understanding of how they know it's not metastatic BC in other side.

So... I'm assuming my right IDC was there first. How do I know the DCIS on left isn't mets. It has the same characteristics. I've tried to research and there are times when it qualifies as mets. Just wondered if any of you asked this and what response you got. My MO seems nonchalant about it. If that's the right word. It's uncommon and just wondering why and all.

Hi All,

I hope I am at the right place - please forgive me if I am not.  Also, please forgive my rather long, first post.

I have been lurking for a while, reading what I can, but now that I have a more definitive diagnosis, I thought I would post.

Since the beginning of the year, I felt what I thought was a rather large lump on the right side of my right breast, near my armpit.  I was an amazing mammogram-phobe, and put off seeing the doctor hoping that the lump would go away.  It did not, so in March, I reconciled myself to the fact that I most likely had BC and scheduled my first mammogram.  While the lump was very palpable, it did not show up well at all on either mammography or ultrasound (US) - only a small dark, confusing area showed up.  A core needle biopsy was scheduled in April and came back as ADH.  I was told it was probably nothing and the excisional biopsy with wire localization was scheduled for June 18th.

As a side note, the delay between the ADH diagnosis and the excisional biopsy was somewhat purposeful, as my MIL was diagnosed w/DCIS and had a mastectomy, and my father suddenly passed away - all this was going on at the same time, and there is only so much one can handle

The path report came back on the excisional biopsy (June 19th) and was positive for extensive ADH, extensive DCIS, and IDC throughout the entire tissue (5 x 3 x 2 cm).  Margins were not clear.  None of this showed up on either mammogram or US.  My BS scheduled and MRI (June 19th) and presented me to the tumor board (June 21st).

At the tumor board, I was told that the MRI picked up a small (0.4 x 0.3 x 0.4 cm), suspicious spot on the left breast, just under the nipple (never showed up on either to mammogram or US), and I was scheduled for another core needle biopsy of the left breast on June 28th, as well as genetic testing.

The path report on the left breast came back yesterday (July 2nd) as positive for IDC.  Both tumors are ER/PR+.  The right side tumor is HER2- and I'm still waiting the results for the left side tumor.

I am also still waiting on the genetic testing results.

My BS recommends BMX w/out nipple sparring.  I am so unhappy with this recommendation, as I've always approached this with the purpose of saving as much of my natural breasts as possible.  I was so hoping he would recommend further lumpectomies with rads, as that has been our discussion all along until the left side tumor reared it's ugly head and came back IDC right under the nipple.

I'm struggling w/the decision to agree to a BMX.  I do know that if the BRCA1/BRCA2 comes back +, then my choice is made for me and a BMX it is.  But if the BRCA1/BRCA2 comes back neg. and I just do further lumpectomies, am I just postponing the inevitable?  If the BC does come back, I would however, have my breasts for that much longer, which is a plus.  While they're not perfect, I like my breasts, and want to keep them if I can.  I'm also scared of what this is going to do to my husband's and my sex life, and/or how tamoxifen (which is also being recommended) will complicate matters.

I do have 3 young children, all under the age of 11, so I wonder if I'm making the right decisions (by trying to avoid BMX) by them as well.

Thank you for listening and offering any guidance if you choose to.  I appreciate these boards and all the help that is here.

Much love and thoughts of peace to you all.

Kim, also, on the main BCO site is an info page on mastectomy vs lumpectomy. There is also a fairly recent thread about that question, just search for lx vs MX. Good luck.

Kim,



Sorry you are going through this. I tested negative for all genetic tests avail, however, in my early 40's grew bilateral BC's, highly ER+ even after having ovaries removed in hysterectomy/ooph in 08. To me, I felt it logical to remove my breasts. I also did so to avoid radiation to my entire chest. Those were my feelings and I have no regrets. I was fortunate to be able to keep my nipples and skin and I also had DIEP reconstruction. So everything is mine.



Good luck to you in whatever direction you go.

Sept45, hugs. Hard decision but you will do whatever is right for you. Both my BS and PS AND my MO WERE SURPRISED by finding the IDC in my left breast after mx. My feeling that something was hiding and my family history sent me down that route. Much love.

Wow on th PTEN results issue. I tested negative but head measures very large. :-/

Guess I will jump in too. I was diagnosed in May, the radiologist who did the biopsies told me I had DCIS on the left (one area) and two areas of IDC on the right. I opted to go for the BMX because lumpectomy was not an option for the right side, and it did not make sense to me to leave one side with the potential for further disease. So I had the BMX in June. The pathology report came back to confirm the DCIS on the left, and the IDC on the right. Report said ER+/PR+/HerS equivocal. Because the Her2 was equivocal, (meaning not clear whether it was low risk or high risk for recurrence) they sent a tissue sample for oncotype screening. This process took a number of weeks, we did not get any preliminary results until early August. Thank goodness they opted to send the sample out for oncotype testing because it came back triple negative (ER-/PR-/Her2-). Turns out that only one of the tumors from the mastectomy had been sent for pathology. They thought they looked the same, turned out that the radiologist had only caught a piece of the corner of the second tumor which was positive. The deeper part was admixed and triple negative. So I spent my summer pretty much thinking that I would be taking Arimidex for 5 or 10 years and that would be it. I got the call a week and a half before my daughter's wedding that they wanted to start chemo ASAP because we were at the end of what they call a 12-week window from the time of surgery until the time of first chemo. So we got my daughter married and I had my first chemo immediately thereafter. I have had a number of complications along the way (too long to tell the story), but inevitably when I meet a new doctor, CRNP, or PA I hear "my do you have an interesting case!" I'm certainly happy to be interesting to people, but would certainly much rather that it was because of something else! As I said, I am so thankful that the sample got sent, at the same time I can't help but be a bit upset with the radiologist who did not get a good biopsy sample in the beginning. Now I worry about the delay.......but have to remind myself that the alternative could have been that they never sent the oncotype out and we would have been thinking circumstances were very different!

I wish you all the best in your journeys.

Martha

Had dcis in the right, got lx and reduction for left. Path rept came back with invasive tubular found in tissue removed from left side reduction, and the dcis on the right, as well as a larger invasive mixed ductal/lobular tumor on the right- that my original biopsy just missed. Went back in10 days for bmx.

hi, 

Even though this thread is sort of dead, or maybe sitting in limbo, just thought I'd post to revive it a bit. I remember when I was first diagnosed, I was desparate to find more info on bilateral breast cancer, so figure there are still others out there looking.

I was diagnosed with synchronous bilateral breast cancer this past summer of 2013. I was 47 years old. I had a pretty big family history, though I am BRCA negative. 

I was first diagnosed with IDC in the left breast in June, followed by more tests (pet scan, breast MRI, etc.) and another biopsy in July which also revealed cancer in the right breast. (it was first thought to be DCIS, but after surgery was found to be IDC also.) 

In August I had my surgery: bilateral lumpectomies and bilateral SNBs. The cancer in the left breast was larger and somewhat more advanced than the right, and there were micro metastasis in the left sentinel node.

My oncotype dx tests showed low risk for both tumors, so no chemo was needed. 

September through end of November I underwent 10 weeks of radiation, 6 weeks on each breast, (but overlapped a couple weeks where I had radiation treatments to both breasts at same visit, so 60 tx took 10 weeks instead of 12).

I did really well throughout radiation. I worked through it all. (The only time I missed work was for 3 weeks after my surgery.) My skin held up very well, and fatigue was pretty minimal. I did develop some later fatigue, starting a few weeks after finishing rads, and still continuing now, but nothing too terrible.

This month I started tamoxifen, for 5 to 10 years. (Maybe 5 of tamoxifen, followed by 5 of an AI once I reach menopause). So far so good, haven't noticed any side effects yet. Hope not to.

One thing I wanted to mention is when I first found out I had cancer in both breasts, I felt very devastated, and thought my prognosis must be very poor. But my MO said that they just go by the worse of the two sides, and that is your prognosis. So in my case, I am stage 1b. Still very good prognosis. 

I also used to feel very fearful that since I had gotten cancer in both breasts, that I must be more prone to it, or somehow more "diseased". I mentioned to my MO I felt like I was waiting for the other shoe to drop. He said, well, maybe it already has. After that, I began instead to think maybe I already had a recurrence, it just happened at the same time. So, if that were the case, what would be the odds of yet another recurrence? So now I feel much less scared than I did in those early months after diagnosis.

So, that is my story, and hopefully it is of some help to someone.