Bilateral Breast Cancer

Janet_M

Anybody out there have a bilateral breast cancer diagnosis? I haven't met anyone else with my diagnosis. Apparently it's quite rare -  I've heard as low as 2%, and as high as 10%.

I was diagnosed last summer with a tumour in each side. I've had a double lumpetomy, chemo, and am now having radiation. Sheduled is a BMX with immediate reconstruciton for the fall.

I would love to hear about other's and their treatment plan. My surgeon told me that I was at a 'slightly higher risk' of recurrence'.  Becuase I'm scared, I'm going for the BMX but I still don't know if I'm doing the right thing. I should also mention, I'm only being radiated on the right side where I had 2 positive node. I didin't want radiation near my heart.

The more I research, the less I realize I know. My goal is to lower the rate of recurrence - and by BMX'ing it'll come down by 5-10%.  Sometimes this feels like a lot - sometimes a little.  

I would love to hear from anyone in a similar situation. 

Janet 

Chickenpants

Hi Janet



I have two primaries although I couldn't find a way to show this in my diagnosis section of my profile. First bout ever with BC - pretty much at low risk with the exception of getting older and being a woman. I'm 52 now, but was first diagnosed with DCIS and LCIS in the right breast at 51. Lumpectomy, clean margins September 2011. On routine MRI follow up after surgery, a suspicious area was found and a second diagnosis of IDC and DCIS in left breast and no lymphy involvement. Second lumpectomy with SNB December 2011. I'm now starting rads for both breasts due to grade of cancerl cells although all tumors are tiny (2mm, 3mm, 9mm). 16 doses each sice with 5 boosts for the invasive side where there was a two mm cauterized margin. No chemo recommended.



My recurrence risk is 18% and my survival rate is 97% because apparently the cancer cells are lazy for mitotic rate and their ability to spread to distant areas. I am recommended to take tamoxifen for five years following radiation but will carefully consider this as I suffered a subarachnoid hemorrhage January 5th. How lucky is that on top of two primaries?



In spite of it all, happy to be here. As in alive and fully recovered from the stroke.

coraleliz

Chickenpants-there are 2 kinds of strokes, Bleeds(hemoragic) & embolitic(clots). I believe tamoxifen puts us at risk for embolitic(clots). it's suppose to be a small risk, but if it happens to you it's real. I'd ask your neurologist about this risk in your case.

I was diagnosed with bilateral IDC BC. No family history, risk factors, etc. One of my tumors became apparent when I noticed a "lump". But that lump wasn't BC, it was one of my regular lumps being pushed around by my tumor underneath. The only reason my tumor in the other side was found was I had a MRI. It seems that not all women get these. What I believe is that it is more common than "rare". So many stories about women being diagnosed with low grade tumors not far from their initially diagnosis. Detection methods leave a lot to be desired but the one's we have don't work if you don't use them. So what I'm trying to say is that bilateral BC is being underdiagnosed. That these slow growing tumors were probably present but went undetected in the other breast & get diagnosed later as a 2nd primary.

I ended up getting RADs on both sides. Lypmph node invovlement on one side & lyphatic vascular invasion on the other.

Chickenpants

Hi Coraleliz



I have consulted with my MO on my SAH but my neurologist won't get involved in advising on tamoxifen. He feels that it's a decision between me and my oncologist. Too bad as I'd like to pick his brain. Perhaps the 1% risk of blood clots seems small but after suffering a type of stroke that affects 1 in 100,000 I don't take this lightly.



I think you've got some good points on under diagnosed "primaries". I did insist on an ultrasound on my other breast. My invasive side never showed anything suspicious on my screening mammo.

GG27

My diagnosis was bilateral BC, I was told very rare.  I had rads on both sides because of node involvement on both sides.  I am three years out, but am having another bone scan because of unexplained arm & shoulder pain bilaterally.    I am on APO tamoxifen as it's the only thing I can take without major SE's.

Kimberly54

I also was recently Diogenesd with bilateral BC. I had lumpectomy on each side. Nodes were negative. I am not doing chemo or drug therapy. Don't know what to do about radiation.

KBP

I was diagnosised with bilateral BC. DCIS, grade 3 on left and DCIS, LCIS +ILC 2mm on the right. 2 lumpectomies and I had a sentinel node biopsy, negative on the right. I had bilateral rads and taking Tamoxifen. No chemo.

I've had issues of soreness, and continue to use heated pool therapy with weights to maintain my range of motion. I feel pretty confident knowing I showed up and have done all they've asked me to do.

I joined a cancer support group in my town. That has helped immensely deal with the day to day living with a cancer history. 

BenitaLynn

Fall of 2011 had bilateral mastectomy, only knew of one lump in the left breast at time of surgery, ended up 3 in L and 2 in R, so followed by a bilateral lymphectomy, 28 removed-6 positive R and 40 removed-2 positive L. This was followed by 4 chemo treatments every 2 weeks, followed by 20 weekly treatments of chemo, followed by 33 daily radiation treatments which ended on July 3, 2012.  I am currently on arimdex for next 5 years.  The cancer was er-pr positive.  I have lymphodema in both arms, right is worse than left but manageable so far.  Watching salt intake, it seems to make it worse and exercising regularly seems to help.  I feel that the mammogram didn't detect soon enough, would encourage everyone to demand a MRI if you have family history.

KBP

Hi Benitalynn, 

I haven't checked in for awhile. Sounds like you are finding ways to cope. It is nice to have the company of other bilateral gals.

The swimming exercise seems to help me find an emotional balance, and keeps the soreness at bay.

However, there are days I don't have the energy to do much. I worry and fret. 

I am hoping I could discontinue taking Tamoxifen. I think it is effecting my energy and is a cause for depression. I'll talk to my doc....it has been 3 years since diagnosis. I haven't seen concrete reports stating the there is a significant risk between 3 to 5 years. I have just seen the up to 3 years is the highest reoccurence risk, and of course the standard hormone therapy is 5 years..looking for more information

Needed2

OK.  I am real new to this - posting and diagnosis/treatment.  The first thing I notice is I cannot adequately state my saga on the diagnosis and treatment questionaire.  How frustrating is that for those of us with bilateral breast cancer - and different cancers in each breast?  You would think that THIS site would have a way to allow us to fit in.  That is my first beef.  I was diagnosed first on the right and then on the left - within two weeks - back in February.  I elected to have a double mastectomy with reconstruction.  Really glad for that choice but it was a difficult recovery and required the assitance of a community of friends to get through.  I am doing great now except for unexplained bilateral hand pain. 

I just want to chime in - more later.

KBP

Hi Needed2,

To fill in your "bilateral" info, go to My Profile, then Diagnosis and fill in the info for one side, then, click on purple ADD DIAGNOSIS, and you can fill in the info for the other side.  Do the same in the Treatment screen.

I also had the same puzzlement when I first tried to list my info.

Good luck, bests, KBP

Beth10288

November 23 2012. Iwas just diagnosed with bilateral breast cancer. I have been asked to participate in a study for gene related bilateral breast cancer. Has anyone had this study done? What were the results?

Jazzygirl

Hi ladies: I have what I guess is bilateral breast cancer. An 4 mm mass on the left side found during my yearly screening mammo and a 1 cm area of DCIS found during the MRI that was done after I was diagnosed. I had a double lumpectomy with clear margins and no node involvement. Internal radiation was recommended for my case, and I have completed the invasive side radiation in mid January, will be returning in a few weeks to complete the radiation for the DCIS side.

What remains to be answered is what will follow, most likely some sort of hormone therapy. I had some recent OnctypeDx results provided which were 12 for the DCIS area and 23 for the invasive. The invasive area is the one of concern and it has the higher value that is in the grey area where there is no clinical data to support whether those in the intermediate zone benefit or not. In reading some posts here and on other sites, it appears it is a personal decision. I will see two different MO's for their advice on my options and what my risks are with what remains to be done.

I have tolerated the surgery and radiation just fine, but am fatigued a lot of the time.

Beckers

I too had bilateral BC. Curious to know what you all have been told about recurrence risks. I am always told they just treat based on the worst one. Older research seems to indicate worse prognosis. I'm just curious as to what you have found or been told.



Rebecca

coraleliz

I was also told they treat the most advanced tumor. For me that was the one with node involvement since both tumors were ER+ PR+ HER-. I guess there could be a situation where you would treat both. Tumor#1 ER+,PR+,HER-   Tumor#2 could be ER-,PR-,HER+  

Beckers

Two different cancers would definitely be two primaries. Mine were the same except one was DCIS. How do they tell if it is mets to other side or 2 primaries?

Jazzygirl

Beckers- I have not gotten great information on reoccurrence rates for having IDC and DCIS in two different breasts. I was just recommended to do the lumpectomies and radiation for both. I do plan to ask the MO's I will be meeting next about this with respect to the treatments I have done to date and having it in each side. I have read there is not a lot of literature on this with respect to projecting reoccurrence. The IDC is the one of concern from what I was told, the DCIS is of lesser concern but still needed to be treated with surgery and radiation. I have my DCIS rad scheduled in a few more weeks.

I believe they determine if it is two primaries depending on the pathology. I have read sometimes women just have DCIS that starts at the same time in both breasts. I think that may have been the case for me as I had some DCIS in the tumor with IDC, so I think it began as DCIS and then changed. Believe it or not, there was something there for 2 years in that IDC area just hanging out that another imaging center never mentioned. But last year when I switched insurance and imaging centers (to a very good imaging center), they said that the small area that was there had changed, and then the rest followed. Based on that, I believe my IDC started as DCIS probably. The other side with the DCIS was found through the MRI, it never showed up on any mammos last year or in the past few years.

I would say ask your MO for what he/she thinks and/or seek another consult for more information. We will all live with some sort of risk around this no matter what treatments we have. I am just seeking to understand what risk I am going to be living with for the longer term.

grover

I just turned 43. I was diagnosed with IDCS & IDC for same exact tumor in right breast, which was explained to me as it wasnt invasive all around. Still makes no sense to me... it was grade 3 & triple negative. (This lump was initially found last August but not diagnosed til mid January.) An mri done at end of January found lump in left, later core biopsied. This one is IDC also, but triple positive! Even though im BRAC -, i do have family history, so opted for BMX, though trusted onc.said lumpectomy w/ radiation was equally effective option. Treatment plan now includes 5 mts. of chemo, 5 & 1/2 more of radiation, plus hormone therapy, for which i may need to have ovaries removed, since i have an unexplained blood clot in my history. I was told that having 2 different kinds, 1 in each breast, was very rare, but also was lucky second was found so close in time, as far as treatment, and also meant the first hadn't metastasized, which was good news. I am so grateful to have found this forum. Its sad there are so many of us though.I wish you all recovery and PEACE!

cubsfan

I was diagnosed with bilateral breast cancer about 5 years ago. Two different primaries. oncologist told me that determination of recurrence would be the "worst" one.

My left was stage 3 w 4 nodes + and right was sage 2 with no positive nodes. L side was 90%er/pr+ and R was 70% Er/pr+ I had bilateral mastectomy and radiation to l side with ACT chemo x6 Had surgery July 08 so almost 5 years. Currently on Femara

My sister has had three different primaries all triple negative 19 years ago and 17years ago and now 1 year ago diagnosed again with triple negative stage IV. BRCA negative for me I just try to focus on today and tomorrow not yesterday. Doing acupuncture also for immunity. Best to all

Jazzygirl

Hi ladies- I originally posted in November and did speak to the med onc and rad onc about my reocurrence rates. From the standpoint of the surgery and radiation treatment for both breasts themselves, that should bring me down to around 4%.

However, my OncotypeDx tests for the invasive (23) and DCIS (12) were also evaluated. He advised they go with the worst one (IDC) for the prognosis. Oncotype 23 equals 15% reoccurrence rate to distant locations. He recommended doing hormone therapy next to bring that down to 10%. Chemo would only lower it a few more percentage points, so I opted out of that. I am going to be starting Arimidex in the very near future. 

Cubsfan- my sister and I both got diagnosed with bc within months of each other. Our cancers are very different, she is a Stage 2 HER2+. I have the bilateral bc with Stage 1 and DCIS and both ER/PR positive.  We have no other women in our family with bc, outside of a distant cousin's daughter who got it very young in her 30s and found out during a pregnancy (fortunately, all are doing well at this time). I am BRACA negative too. I hear more and more stories of sisters showing up with it together where there is no history before in the family. I am sorry about your sisters reoccurrence and worry about that with my sister too.

We do the best we can with our treatment and hope for the best long term. Blessings to you all!

suzygirl

Well, it's been over a year since any new posts here, but since I too have been able to find so relatively little about synchronous bilateral breast cancer, I thought I would add one more "case report." Last Sept. 25, 2013, I had a surgical biopsy after the finding of a atypical ductal hyperplasia on stereotactic core needle biopsy when after a mammogram found calcifications. I had been told I had a 20-25 percent chance of being "upgraded," but I assumed only to DCIS -- but the surgeon told me I was one of the 2 percent who went from a benign biopsy all the the way to invasive cancer. She then ordered an MRI, which found a very large amount of associated DCIS that ruled out any chance of lumpectomy in that breast -- and also found three "suspicious masses" in the other breast. I Then had both one ultrasound and two MRI-guided core-needle biopsies (eight cores each), which found every suspicious thing including LCIS in the second breast -- but no actual DCIS or invasive cancer.  The surgeon was willing to do two additional excisional biopsies as well as the unilateral mastectomy, but by that time I and been poked and prodded enough. Also the excellent radiologist kept stressing to me, "You have very active breast tissue. You already have a 20 - 25 percent chance of cancer in this second breast." I opted for a bilateral mastectomy and sentinel node biopsy on both sides -- and again, the pathologists found invasive ductal carcinoma  in the second breast! The surgeon said I was the first patient in her 17 years to come into surgery twice with "benign" biopsies and end up having invasive cancer in both breasts. Both tumors were stage 1A, no nodal involvement. Oncotype DX testing was done on the larger one. With a raw score of 6, my oncologist recommended against chemotherapy. I am now on anastrozole. As both tumors were ER and PR positive, he said, "We'll treat both tumors at the same time." He seemed to think prognosis (good) is based on the "worse" tumor, which in my case is just larger. The surgeon said the second tumor, which was only .5 cm. would have been found in a year or so if it hadn't been discovered now -- but I am very glad I didn't have to revisit a cancer diagnosis and go through all this a second time. The radiologist said my kind of "active tissue" tended to run in families. My paternal grandmother died of breast cancer at 49, but no one on my mother's side has had breast cancer. I have no sisters, cousins, daughters or granddaughters, so I feel no need for genetic testing. All my doctors agreed that those were two separate primary invasive ductal carcinomas, but I have to admit I wonder if there is some underlying active disease process that caused all the many abnormal changes in my breast tissue on both sides. But so far, so good.

Jazzygirl

Suzygirl- been a year plus since I was out here. Doing fine so far and despite being bilaterial with invasive on one side and some DCIS on the other, my doctors think I should continue to be fine. I started anastrozole around the time of my last post and have been through 2 follow ups, including mammos, and so far so good.

One thing you may want to ask about is a new test called GeneDX that has some of the new genes beyond BRACA that are associated with breast cancer. My breast surgeon says when you end up with bilateral, they often assume it is genetic. I had the BRACA tests from the start and it was negative. I also just had the Gene DX and that was also negative too. So there is no "genetic explanation" for the bilateral cancer in my case.

Here is hoping we all remain healthy and disease free!

Sodie1017

I'm glad I found this thread! I was beginning to think I was the only bilateral case! I had my routine mammogram in February and was called back for more pictures. There were clusters in both breasts. Then I had a stereotactic breast biopsy and I want to know who invented that procedure! The results were LCIS in the left breast and DCIS in the right. Next an MRI then a consultation with a breast surgeon. She spelled out my options - lumpectomy and radiation or mastectomy. Because the cancer was high grade and because it was bilateral, I chose the BMX.  A friend's sister-in-law is a breast cancer researcher at Duke so I got her opinion. She agreed with the BMX. 

My maternal great grandma and my maternal aunt both died of breast cancer. The surgeon doesn't think this is enough to automatically assume it's genetic, but because of it being bilateral, she felt I needed to see a genetics counselor. I've been putting it off and finally called today only to hear that the counselor left and the new one doesn't start until July 7. This was after I was put on hold forever then transferred to maternity genetics where I was asked if I was pregnant. Um, I hope not, but I'd be featured in People Magazine if it were true! I was transferred to the operator who then transferred me to oncology genetics and the voice mail said not to leave a voice mail because it wouldn't be checked for weeks, but rather call Victoria at this number. So I did and Victoria seemed a little confused and put me on hold and then told me the sad story of the genetics counselor not working there anymore. I no longer wonder why the hospital is having financial difficulties. 

I had the BMX on April 3 and was able to go straight to implants. Lymph nodes were clear. I haven't had much pain, but lots of discomfort as my pecs are screaming for mercy from being stretched. I'm doing well, but it's a new normal having these breasts with no feeling. 

There's my story. 

Jilly50

I have had bilateral bc both triple negative grade 3 but 18 months apart. First dx Jan 11 and second may13 had lumpectomy chemo and rads  both times was wondering if anybody told chance of getting it for a third time? Never offered mastectomy and surgeon wouldn't entertain it after treatment!! 

rhogue

Wondering if anyone in this group did neo-adjuvant chemo?

I'm also wondering if anyone has found any online communities for bilateral breast cancer? If there isn't anything out there yet, I'll start something on Facebook ... let me know if you have found anything.

I was diagnosed bilateral IDC in June ... I just got pathology back from lumpectomies (I'm doing BMX with immediate DIEP in December) ... the left side (largest tumor) responded really well to chemo (almost gone) where the chemo had very small effect on the right ... the tumors had the same ER/PR+, HER2- but different growth rates ...

So I'm worried/scarred ...

Mamamule

I understand the additional anxiety and fear that goes along with a bilateral diagnosis. It's like piling on the bad news....

I have a golf-ball shaped lump on left breast which I can easily feel, and went in for screening mammogram. I was initially diagnosed 11/12/14 with IDC in right breast, but mammogram showed left breast was all clear. Although I was stunned by the whole thing, I was fairly confident. The lymph nodes appeared to be clear so chance of survival was around 98%, given my age and otherwise good health.

However, my surgeon ordered additional routine tests after diagnosis, and radiologist spotted something "odd" on MRI of left breast. Assumption was it likely wouldn't be anything significant, but an MRI-guided biopsy was done on 12/4/14. The next day (Friday) I underwent surgery as scheduled to install port for neo-adjuvant chemo and biopsy sentinel lymph nodes (2 removed) on right breast. Then on Monday I got the call that biopsy on left breast revealed IDC and I was scheduled for surgery that Thursday to check lymph nodes! I was still sore from the surgery 3 days earlier, and asked if that was really necessary. I wasn't mentally prepared to repeat the process, and assumed if cancer didn't show up on mammogram it must be fairly small and therefore less serious. Imagine my surprise when the doctor told me this cancer was actually larger and she was concerned! Instead of a lump, it turns out there's a thin film stippled with cancer cells along the entire bottom of left breast. So, on 12/11/14 I had a second lymph node biopsy done and 3 from the left side were removed. They looked clear at initial examination, but further testing by the lab showed that one of them actually was not...

The cancer on the left breast ended up being staged as 3a, whereas the larger tumor on the other side is 2a. I still find it hard to believe that a breast cancer that advanced can completely evade detection by mammogram! I hope other women aren't as ignorant about this possibility as I was. If it weren't for the tumor on the other side, I would have gone home thinking everything was fine and not given it a thought for another year (or knowing me, another 2!). Other than one first cousin, I have no family history of breast cancer so it wasn't even on my radar. FYI, I had the extended genetic testing and it all came back negative.

So, within just over a month I went from being cancer-free (well, not really -- but I thought I was) to having a tumor on one side, then to diagnosis of bilateral, and then to the news that there's lymph node involvement. I don't know exactly what my survival odds are now, but I know it's not 98%! Just the fact that I was diagnosed with bilateral prior to menopause dropped the odds, even without lymph node considerations.

Everyone thinks I'm so strong and I'm keeping up appearances, but on the inside I'm feeling scared and just a little defeated. It's been one setback after another. I appreciate you ladies sharing your experiences -- it helps so much!

L2girl

Hi, glad to find this thread active. I too was diagnosed with synchronous bilateral Breast cancer. In June 2013 I was called back for a diagnostic mammogram, followed by ultrasound and stereotactic biopsy, which showed IDC in left breast. Then, in the course of follow up testing of pet scan an mri, they also found cancer in the right breast, which also turned out to be IDC.

I had bilateral lumpectomies, and SNBs, which found micromets in the left Sentinal node. It was 2mm (.2cm) so just on the border of being more than a micromet. I had radiation on both breasts, but no chemo chosen, based on oncotype score. Now, I am currently taking tamoxifen, coming up on one year mark for that.

I too have been trying to find info on recurrance rates, or prognosis for synchronous bilateral BC, but having a hard time finding anything. I just know my MO said they go by the worse of the two sides, and base your prognosis on that.

Last week I had an MRI, so waiting for results, which is very stressful as you all know!

I asked a couple of my doctors how often they saw bilateral breast cancer. They have all had other patients occasionally, but nearest I could estimate, it must be like 4 or 5%? I have seen estimates online ranging from 1% to 10%.

It is nice to know we are not alone, although the there are apparently now that many of us. But this is a good place to find each other!

KBP

Hi all! I am back after my last post in 2012.

I am doing well. I am at my 5yr free and clear so far. I stayed on Tamoxifen except for a 3mos holiday after trying the AI -Letrozole at the 3yr milestone.  After 2mos on the AI, I had too much joint pain, headaches, extreme hot flashes..creeping depression.

Now at 5yrs, I decided with my MO to stay on Tamoxifen because I have needed to take Estrace for extreme vaginal dryness, and soreness. (Estrace really works!!

Biggest improvement is having less pain in my larger surgical left breast lumpectomy. I am using a bra with a bra insert to protect and cushion the fragile scar tissue.Good luck to all. Thanks for posting.

Jazzygirl

KBP- good to hear you made it past the 5 years! Congrats!

I too use Estrace and it really does help. I need to perhaps find some better bra alteratives to help manage some of the sensitivity around the scar tissue areas. So far, a good sports bra feels the best.

Thanks for letting us know how you are doing!

AndreaC

I was recently diagnosed with breast cancer on the left side, and while waiting for my lumpectomy had a screening CT to check for metastases. That found a "shadow" on the right side, which turned out to be another tumour which had not been spotted on the initial screening mammogram. So my lumpectomy has been cancelled and I am now waiting to see my surgeon. I have already told her I am going to opt for bilateral mastectomies so I don't have to worry about this any more.

As far as I know I have no family history, but I have a small family. I had colon cancer just over a year ago, followed by surgery and chemo...there must be a genetic component.

KBP

Hi Jazzygirl! and all,

I have just checked back and found your reply. Very exciting! 

Well, because I need Estrace my MO(medical oncologist) suggests stay on Tamoxifen for another 5years. I have handled it pretty well..just hot flashes and fatigue & ugh weight gain. Some slight leg issues at night. Wondering what withdrawal will be like after so much time?

Bra issues:After so much nerve pain in my chest and side for 4 years ,PT, swimming, aquaaerobics, nerve pain meds(gabapentin..a mistake!) finally I found inserting a silly push up bra pad to support and protect my sensitive left side has given me just enough compression, and security from being bumped, that I am not in pain all day. Radial lumpectomy on left side took alot of tissue..numb, yet feels nerve pain..ouch!...I never forget to insert the pad and it evens me out a bit.

Right side has been mostly trouble free..and that had the ILC. 

All good news. Persistence and good luck

thinking Spring in snowbound New Hampshire!