Who else had Bilateral BC at time of diagnosis?

Boo307

I was diagnosed with DCIS in the right breast and IDC in the left, had bilateral lumpectomies and bilateral radiation.  During radiation I found out that bilateral BC occurs in about 1% of the cases.  The last I checked BC.org didn't have a mechanism for me to fully profile my cancer.   Who is out there with the same experience?

Thanks.  Boo

bevdurrant

Hi Boo, i had a 5 cm IDC in my right breast when i had my bmx  they found a 2 cm DCIS in the left breast the onc and surgeon said we made the right choice with the bmx, this didnt show on any scans, he said it ws a good thing otherwise a year or so down the road i would be in this situation again!, they call it sychronus bc, take care Bev

coraleliz

I had a 1.6cm IDC on the right & a 1.3cm IDC with 2 positive nodes on the left. It took a MRI to find the one on the left. The one on the right was starting to push my other lumps around prior to having it evaluated. I read that bilateral tumors happen 4% of the time & are more common in women with a family history of BC. I had bilat RADs also. I went with the BMX. Diagnosing for me was almot as bad as the treatments(I didn't have chemo).

ailenroc

Not at the time of diagnosis but at the time of mastectomy! IDC in right, DCIS in left. I had decided on a bilateral mx - and thought I am doing this prophylactically on the left. I had had 8 studies/biopsies on the left - all came out negative ... until the pathology report came back post op and it was clear that I had had bilateral. See my earlier post on this:

Bilateral or Unilateral Mastectomy? Implant risks?

 I am not BRCA positive.  I have heard and read mixed data of how rare true bilateral bc is and what exactly the meaning of it is in terms of prognosis and would love to learn more about it. If anyone knows of any good data source / research articles on this, please let me know. The real shock for me was that 8 exams (biopsies, pet, mri, mammo) could not detect the cancer pre mx. Makes me very nervous about the reliability of any findings these days - just because they don't see it, doesn't mean it isn't there. I'd like to feel a bit more reassured after a negative imaging study.

finallynow

I was diagnosed with IDC on one side and DCIS on the other and had a BMX. I have no family history and tested BRCA negative. It was so surprising to go to the doctor with one tiny lump on one side and find out that I not only had breast cancer, but that I had something wrong on both sides! My doctor always says how "interesting" my case is...I don't want to be interesting anymore!

JFV

ILC and IDC and DCIS left side.  IDC stage 1A right side.  Thought right side was phrophylactic going into surgery.  Didn't know I had so many tumors on left side either.  

Kindergarten

Hi, there!!!! Yes, I had bi-lateral breast cancer, Stage 2b left side, with one positive node and Stage 1, no nodes involved on the right. I had neo-adjuvant chemo first, then had bi-lateral mastectomy, no recon and 37 radiation treatments. I am currently on Aromasin, but will go off in November. I am 7 years out. Doing great!!!!

Boo307

Thanks for all your stoires.  Glad to hear I'm not the only only one.  From what I have read about prognosis, risk seems to be based on the more serious of the cancer pathologies.  The radiology technicians said they saw about one woman a year diagnosed initially with bilateral.  They saw some women back again a year later with cancer on the other side.  My mother had a new primary on the other side 15 years later!

Boo

quiche

So glad I found this thread. I had a bilateral multicentric diagnosis. My docs took it very non-chalantly, but a few of the techs I encountered seemed amazed (?) impressed (?) ha! I'm not sure what word to use, but one said "Do you know how rare this is?" I had read that it was rare but my docs reactions had me confused.

What's been most confusing for me is the staging. I asked my Onc what stage I was and he said they don't do that any more and gave me a string of info that makes no sense to me. My surgeon suggested I was a stage 3 on the right side because of the number of lymph nodes involved, but then there are different levels of stage 3. Geez . . . really can anyone give me a straight answer.

From what I can understand from the pathology report, the tumor on the right is IDC and the one of the left is scirrhous. Onc said right side is T2N2A and the left is T1CN1. Just wondering if anyone can decipher those letters/numbers to determine my stage. Not that it really matters I suppose, it just feels awkward not knowing for certain and relying on my own guessing game. (My onc's not a real communicator as you can probably tell)

Any info would be appreciated. So thankful to find this special group :-)

thatsvanity

My sister had bilateral breast cancer invasive ductile carcinoma, I didn't know it was in only 1% of BC. Where did you read that information?

Thanks so much,

Amy

michelle1014

I thought I only had ILC .7cm on the left.  Prophalytically had right removed (just because my grandma had breast cancer and had one removed and 3 years later had the other removed, I new I wasn't doing this twice) and the right had .4cm ILC that never showed up on a mammogram, ultrasound or Breast MRI.  Glad I did it:)

Boo307

quiche,  Yikes! That is an interesting situation you have there.  I thought none of my doctors told me bilateral was rare because it didn't change the treatment or even seem to compound the risk.  It may be just chalked up to thoughtlessness, a point of interest that I would have been very interested to learn.  It was the radiation techs who clued me in. 

Thatsvanity,  Looks like the incidence rate is higher than 1%.  Here is some info I found.

Bilateral breast cancer (BBC) is a rare clinical entity. Unlike unilateral breast cancer there are no clear treatment guidelines for BBC. There are several controversial issues regarding BBC pertaining to the diagnostic criteria, nomenclature, and management policies. To address these issues, a retrospective analysis of breast cancer database at a tertiary care cancer center was performed and the clinical profile, treatment patterns and outcome of patients with BBC were analyzed.

Thirty out of 1100 (2.7%) patients with breast cancer treated between 1993 and 2003 had BBC, of whom 20 patients had metachronous and 10 patients had synchronous BBC. Family history of breast cancer was present in five patients (16%) only. Contralateral breast cancer (CBC) was detected mammographically in three and by clinical examination in 27 patients. Most CBC patients had early-stage disease compared with the index side (73% versus 27%). Fifty-six out of 60 tumors were found to be invasive ductal carcinoma, and none of the patients had lobular carcinoma. Twenty-three patients had bilateral mastectomy, three had unilateral mastectomy and four had a combination of breast conservation and mastectomy. Sixteen patients had unilateral and six had bilateral adjuvant radiotherapy. All patients received adjuvant chemotherapy and/or hormonal therapy both for index and CBC based on the stage and hormone receptor status. At a median follow up of 31.5 months (3-142 months), 23 (76%) patients were disease free and seven (24%) patients had disease relapse. Mean overall survival of patients with MBBC was significantly longer than those with SBBC (30.4 months versus 19.2 months; P = 0.045).

BBC is an uncommon clinical entity. These patients require individualized treatment planning based on the tumor factors and treatment factors of the index lesion. Optimal results can be obtained by using a logical multimodality treatment approach for BBC.

http://breast-cancer-research.com/content/7/S1/P6

Boo

nene2059

I was diagnosed in January 2009 with Bilateral Breast cancer.  I had IDC in both breasts. I had a palpable lump in my right breast and MRI found the tumor in my left.  I was only 36 and am BRCA neg.  They were both hormone + and Her2 neg.  Their patholgy was different enough to know that they were completely separate primary tumors.  Weird that cancer was in both but fortunate to find it and have such effective treatment.  I know that books still say that this is rare but I know of at least a few women in my support group that had BBC @ diagnosis.  I look back on it almost 3 years later and I don't feel "rare".  I just feel lucky that if both of my breasts were going to behave badly they decided to do it at the same time.  It would have been harder for me psychologically if they had been found a few years apart and I had to do treatment again.  You know I also thought having BC under the age of 40 was rare but I now know at least 20 women in my area that were diagnosed under 40.  Oh well.....I am happy to report that life has returned to normal for me and I feel very healthy.  I am not sure where you all are in your treatments and recovery but I wish you all the same!!  xxx

******edited to correct spelling error.  I spelled "psychologically" something like "physchologically" and I have a B.A. in Psychology....LOL.  Holy cow can I still blame chemo brain?  **************

ScienceGirl

http://jco.ascopubs.org/content/early/2011/11/16/JCO.2011.35.0165.abstract

A Case-Match Study Comparing Unilateral With Synchronous Bilateral Breast Cancer Outcomes

Hi All, nice paper came out this week in JClinOnc.  States that our outcome with synchronous bilat BC is not significantly different from unilateral BC when you match the cancers (i.e. higher stage of the two synchronous cancers matched to same stage in the unilateral controls).  

I had synchronous bilateral cancer 1.3 and 2cm - both tumors were discovered by my regular screening mammography.  My cancer was mixed ductal / lobular in both tumors.  I read somewhere that this type has a higher incidence of bilateral primaries.  My medical team did seem to treat me as an oddity - presented me to the tumor board and stated that my case was out of the ordinary and interesting, LUCKY me !?! 

coraleliz

My BS re-questioned me about possible other relatives with cancer. She said bilat BC is more likely found in families with a history of BC. She even asked me about relatives that were not mother,dtr,sister. FWIW, I read that bilat BC occurs up to 4% of the time. That's the highest figure I found. What it really means to me is, bilat MX, bilateral RADs but fortunately I don't have to double up on the Tamox. The things I find to be thankful for Oh I forgot, bilateral lymph edema risk

GG27

I too had bilateral BC.  My family Dr said that he never had another patient with it, in 40 years of practice.   Glad to read some information about it, like others here, the techs & nurses are always amazed by the rarity.   I worry about the bilateral lymphadema risk too.

AnnetteS

My family has no history of cancer and I am  BRCA negative, although there was a mutation in one spot, they said it was not the mutation that is the BRCA mutation....

I was also diagnosed with BBC. IDC and DCIS in both. However I am confident that they did not start at the same time.  I was on an every six month mammo on my right side due to a suspicous area that did not appear to change over time.  After two adn a half years of this, they found cancer on the left side during a routine mammo.  That prompted an MRI that found the cancer in the lymph node on the right side.

I, too, have perplexed my doctors all through this journey.  I have heard, "hmmm, that's odd" and "That doesn't usually happen,"  along with other comments making me feel abnormal.  My case was also taken to the tumor board.  When I first met with my oncologist, he said that they had been talking about my case the day before.

It is scary how the cancer can just sit there, undetected for so long. When I went for my MRI, the radiologist who had read my mammo and US said that he was so sure that I did not have cancer in my right breast that he should be fired or quit if it is there. (He did not qut or get fired). Afterwards, I was told that they could not find it (my more advanced cancer) because it did not present itself as cancer.

Since I knew no one else (well now I do) with BBC, I decided that I got the second cancer to save my life, since the doctors were not finding the first cancer that had already spread to a lymph node (4cm node completely cancerous. 

I am sorry to see so many of us, but we are 'lucky' to have our treatments for both at the same time.  As for the double risk of LE....ugh that is something I am now dealing with.  LE on one side and trying to protect the at risk side from all those people who come at me with needles....

Boo307

ScienceGirl, Thanks for that great post.  I found many very old studies from the 1980's so it is great to have something up to date.

mfrog, I had some lymphadema on the SBN side in the first year when I went to a lymphadema therapist for a consult.  She measured all the way up both arms and found the lyphadema on one side.  She taught me the message which I did faithfully for a year and it was gone. 

I regularly exercise and am losing weight slowly (a pound a month) to help prevent a return and when I can't sleep at night sometimes I do the message.  So far so good.

Boo 

bluegentian

Interesting statistics. I, too, was diagnosed with synchronous bilateral DCIS - 6 weeks ago. The first was found with mammogram, the 2nd a few days later with MRI. I have heard that the incidence of bilat DCIS is about 3%. The two RO's I've gone to have not wildly recommended radiation- because of bilat, large breasts, age 68, left tumor close to the heart, history of lung issues from strep pneumonia. I feel I have been in limbo about decisions because of the oddness of my case. I went with bilat LX (a couple of days ago) basically to see what else was there since my breasts are also quite dense. Next week when I get the path results, I will have to make new decisions - travel to make use of SAVI or other type of balloon applied radiation? Bilat MX? Or, if I am lucky and all was clean and small, perhaps no radiation, but take tamoxifen for now, plan monitoring by MRI? My BS is not crazy about me bypassing radiation, yet wants to support breast conservation, if possible. Bilat MX scares me.

Blessings2011

On September 15th, I was dx with DCIS in the left breast, with some areas of IDC. A week later, a second biopsy showed a second tumor of just DCIS in the left breast.

A mammogram on the right showed clear initially, but when my Radiologist went back a few days later to take a closer look at all my results, she felt there were two suspicious areas on the right that showed up in some views, but not in others. Her recommendation at that point was for me to have a breast MRI.

But I had already made the decision to have a BMX - even if the one on the right was just prophylactic.

My surgery is December 5th, and I think we all feel that there may be more cancer present - in both sides -  that what has already been identified.

mixin

Like AnnetteS, my breast cancer story has a life-saving twist to it also.

In Dec of '09, out of the blue, my cousin asked me when the last time I had a mammogram. I told her it had been a few years and she insisted that I have one done. Well, I put her off for a number of weeks before I finally made the appointment, just to get her off my back and stop nagging me about it.

At the end of Jan of last year, the mammogram showed ILC in my right breast. Since ILC has the tendency to go to the other breast also, I had an MRI which discovered DCIS in my left. Since  both lumps were small, I decided to go with lumpectomies and radiation to both sides.

Needless to say, my cousin now holds status as my guardian angel.  

Ladyhawk57

I was diagnosed in 2009 with synchronous bilateral BC.  IBC in the right breast and IDC in the left breast. I had adjuvant chemotherapy and then bilateral mastectomy with radiation to follow. The BC metastisized to the bones early this year and my femur broke at the tumor sight. I now have a rod in place. My last PET in Oct shows significant healing. I am currrently on gemzar and aromasin. I feel pretty good except for lymphedema in my right arm and my left leg.

quiche

Boo307: Thanks for your response. Whew! I'll have to catch up on all that reading during some quiet time . . . so many words and terms that are so foreign to me, not to mention the whirlwind of numbers! I guess what it boils down to is that we all are special. (It's interesting to note that this thread isn't highly active, which to me is another sign that there may not be many of us)

My surgeon was more honest with me than my onc. He didn't use the term "rare", but said this condition is "unusual". He also added that is wasn't uncommon, which then confused things again ha! He explained that they would treat each cancer separately as if I were two different people. So during surgery, they completed one side, cleaned up and reset everthing as though another person was coming in, then they did the second side. Radiation was the same, they did one side, reset and did the other with an additional blast on my right side to the lymphs.

I also understood that I wasn't at any greater risk, my survial stats are based on the worst of the two. It did cause them to question the genetic factor (also had GM with bc) so I had the BRCA test. To my surprise (pleasant surprise) it was negative. My onc did point out that those are only two genes that have been recognized and there could be others. He is so reassuring ;-)

Well just wanted to check in and say, "Hi" and let you know you are all still in my thoughts.

Take good care . . .

Carmelle

glad to see other posters. I had Invasive multi tumours,largest 6 cm on right/ 5+ nodes and after bilateral mastectomy they found small 2 cm DCIS in left/other side. happy now that we went for the bilateral. not for all but with multiple tumors in one i think clearly multi focal disease and more likely to appear in the other. almost 9 years ago.

Boo307

Welcome all,

Quiche I think you are right.  The fact that few are posting indicates that there are few of us.  I am in a quandary as to whether surgeons or oncologists should make a point to tell us that we are amongst the few or since it doesn't seem to affect treatment or prognosis just not mention it. 

Personnally I always hate learning in a round about way from others something my doctor knew and withheld from me.  To be sure I am very inquisitive and detail oriented, something my doctor's are well aware of from the lenghthy detailed initial discussions we have had about my diagnosis, prognosis, and treatment. 

Maybe others are so overwhelmed that any extra information is counter productive.  But that would mean we are each individuals and should be treated accordingly.

I always come down on full disclosure, how about you?

Boo 

tricia7

Wow - so glad I found this thread.  I was being followed for suspicious caclifications in my left breast.  During a routine mammo when the right breast was scanned, the nipple began to bleed!  After many biopsies of both breasts, I decided to get an excision of the left for clean margins and have  the ducts in my right nipple removed to stop the bleeding.  Both sides came out with extensive DCIS.  I decided on bilateral mastectomy and the pathology came out with .5cm invasive cancer in the right!  (the side that I wasn't worried about).  This never showed in any of my biopsies by sonogram, mri or steriotactic nor in the duct excision!  It's frightening that it could still be there growing if I hadn't been so 'radical'.  Good news - no rads or chemo needed as it was HER2-, BRCA1&2 neg and no node involvement.  Just got implant exchange - and am moving on!

DFC1994

I had DCIS stage 0,grade 2 in right breast and ILC -2 tumors Stage 1 in left along with ILC insitu,AHD. all showed clear on mammo on left breast.My surgeon was so surprised with the path report after we did a Bilateral mx,said he was so thankful we did it.

ymac16

I was diagnosed last September with IDC with lobular features in my right breast.  Subsequently had an MRI done which showed "something" in the left breast as well - biopsy there came out as atypical cells.  Decided to have a Bilateral MX which ended up being a good decision.  There was DCIS in the left and a 1.6cm tumor with mutliple "micro tumors" in the right side with spreading to 2 lymph nodes.  I will be beginning chemo in the next few weeks.  There is no history of ANY cancer in my family and I do not carry the BRCA 1 or 2 genes.  Several of my doctors told me that it was unusual to have BBC.  Glad to touch base with you other unusual cases!

Boo307

Bilateral BC seems to be more common than I realized.  It seems that is unusal, but seldom is it quantified. It may be that there is no research in this area.  The most reliable information I found was from the rad techs.  They said that once a year they have someone with bilateral rads, but often see the same women a few years later.  Of course this excludes the bilateral mastectomies and the many prophylatic mastectomies that show some cancer also.

Thanks for all your stories and hopefully many more will add their story.

Boo

Carmelle

I read it's 3-4% of diagnosis. Men are 2.5% so almost as rare as male BC.

kathy1925

I was diagnosed with DCIS grade 3 in my right breast in Feb 2010. I decided to have a lumpectomy. Prior to surgery, my BS ordered a bilateral MRI, which showed "something" in the left breast. I was told there was a 30% chance it was cancer, and an excisional biopsy was performed while I was having the lumpectomy on the right breast. The biopsy showed IDC, grade 1, 4mm. I was encouraged to have a lumpectomy on the left side, but opted for BMX, with bilateral sentinel nodes taken. The BMX did not turn up any more cancer, as it had been removed with the lumpectomy and excisional biopsies. However, there was ADH in both breasts. My BS said I had made the right decision, and had had "busy" breasts.I did not have radiation, but am on arimidex for 5 years. By the way, my BS and onc were both very matter of fact about the bilateral breast cancer diagnosis, and it was only when I started researching, that I discovered how unusual it is. No family history, BRCA negative.