Bilateral Breast Cancer

Englishmummy

Hi Everyone! Welcome over Excercise.

Are there any long time bilateral survivors that anyone knows of? My BS told me my prognosis was the same as unilateral stage 1 dx as even though both sides were IDC, ALL aspects of both lesions were favourable, but everything I read is rather negative (and don't get me started on the graphs), especially for younger women....I just get myself thinking rational, happy thoughts, and back on with life, then I get slammed by something that I read, so I compound that with my 'friend' Dr Google, who leads me down all the dark prognostic paths. Is there any reassurance to be had? Not that I don't trust my BS and Onco but I wonder if they say stuff to passify since BBC is unusual and they don't really have any truthful answers?

Also, anyone know anything about being at risk for other cancers because of Bilateral disease? My oncologist says [as my genetic test was negative] that's not true - it is normal risk for other cancers, I read it on a post here but can't find where......

 

Jazzygirl

Englishmumm- I have never seen anyone here on BCO who is a long time survivor. Then again, there are many women who don't stay here after they have gone through treatment either. Many drop off with time, so hard to know?

I have read a lot of the same data about bilateral women not faring as well. It seems they are more concerned about the type and stage of any of it vs. it being on both sides.

My sister was diagnosed two months before me, and we were in treatment at the same time, although our treatments were very different. My bc was Stage 0/1 and ER/PR positive. My sister was Stage 2, one side only, and HER2 positive. I was told my cancer was a slow growing one and my oncotype score suggested a lower reoccurrence rate (based on the highest, which was the Stage 1 IDC). Because I had to discuss family history the whole way through, several commented on my cancer being a much different situation than my sisters. I know they worry about the HER2 positive tumors since they tend to be aggressive.

I have had many genetics tests through time.The BRACA tests, which is the tied to ovarian if positive. I have known woman who are BRACA positive, and she had ovarian in her 30s, more recently breast cancer in her 60s. There are other panels and genes tied to melanoma, pancreatic, colon cancers.

All my tests to date have been negative. Besides my sister and a distant cousin, the only other known cancer in our family is an uncle who had prostate cancer.

Here is a link that has some info on genes beyond BRACA that is more readable than many of the other clinical summaries out there:

Beyond BRACA 1 and 2

Englishmummy

Thanks Jazzy - my testing was negative except for a VUS on Chek2 which they believe will turnout to be benign (says likely benign due to where it was in the dna line up). I have no family history of BC either, little cancer in the family mainly due to lifestyle factors: my paternal nan died of stomach/esophageal cancer and my maternal grandad of esophageal, they both smoked for England and cared little about their diet! Other than that we don't have any other cancer, both my parents are close to 70 and quite healthy - my mum exceptionally so, my dad is an alcoholic - for my whole life at least, so he does get bouts of pancreatitis but if he has no flare ups, he's good. No one else has anything, oh, 1 cousin with early onset MS. My onco told me I only need regular screenings for other cancers as I am not particularly high risk for anything else (age, lifestyle, diet etc).

My BS told me similar info to that which you received - ER+ PR+, Her2 -ve, small size, no nodes, tubular on the left - extremely slow growing both sides - old lady cancer in a young(ish) women's body, so I should be thankful for that, right? I have 3 younger children and some days my mind just goes crazy with the what-ifs. By now I should know better than to read stuff, it will be what it'll be, reading stuff doesn't change anything so it does no good fretting - but I still do it. Would still like to hear from a BBC survivor at the 10 year mark....

Englishmummy

Well, my hubby did a quick search and found these...his theory is you can find whatever you are looking for -good or bad...these seem more up beat: just posting for those who come after us

http://www.cnn.com/2009/HEALTH/12/30/heinz.breast....

http://www.ncbi.nlm.nih.gov/pubmed/19283743

I also read this thread if anyone else is interested...seems there's quite a few of us throughout the forum.

https://community.breastcancer.org/forum/132/topics/777241?page=1

SummerAngel

Since my diagnosis I've read every study I can find about synchronous bilateral breast cancer. The problem with many of the published studies is that synchronous bilateral BC is rare so the number of subjects is small. I've seen a few people posting that it's not really rare, but the data just doesn't back that up. I saw a recent study from China of over 15,000 women where they labeled synchronous BC as any diagnosed within one year of the first, which is far longer than the standard 3 month time frame, and even then the incidence was 1.5%: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC439537...

As far as prognosis, I don't want to be a downer, but the majority of studies conclude that there is a slightly worse prognosis for synchronous bilateral BC - even in many of the most recent studies. Typically this isn't a huge difference, though. It's always good, when looking at studies, to read reviews of studies where possible (which are great because they group results of previous studies together and analyze the data as a whole) rather than picking out one or two to focus on. Reviews aren't always available, though, depending on the subject. This is the most recent review I could find about bilateral BC: http://www.ncbi.nlm.nih.gov/pubmed/25007962

In many of the individual studies with small sample sizes, the authors specifically state that their results were influenced by the sample size, causing statistical bias. Example of this: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC424768... The discussion portion of this recent study is very interesting, as it discusses the difficulty in analyzing the significance of bilateral BC (and multifocal or multicentric bc).

Remember that it's difficult to know the study methods unless you have access to the entire study and not just the abstract, so the study may not have taken other tumor characteristics into account, or may have defined synchronous bilateral breast cancer in an unusual way, etc. This is why I like to examine as much data as I can find and not draw too strong of a conclusion without understanding what the data actually says. In the case of synchronous bilateral BC I think that there is still a significant area of the unknown, especially because many studies were done on cases where more specific tumor characteristics were not known. At this point there is no reason to give ourselves additional worry.

Englishmummy

Thanks Summer, very well put. You have obviously researched well AND digested the information. I appreciate your candor - again, as with all of this BC stuff the outcome is going to come down to the person. Some days I can deal with that, others not so much.

AndreaC

Hi all -

I haven't had time to check out the recent links but I will, I promise! I just wanted to chime in about bilateral BC and genetics. Here in Canada it's a very long wait for genetic testing (and you have to be approved in the first place). I have had cancer essentially three times - almost two years ago I was diagnosed with colon cancer and was refused genetic testing despite my relatively young age (51) and history of different cancers in my family. Well, then I got breast cancer - diagnosed in January, a second tumour was discovered in the opposite breast...this time I was approved for genetic testing but I won't have it till sometime next year. I am going ahead with a hysterectomy and oophrectomy in 3 weeks, as a precaution. Even if the genetic testing turns out to be negative, it's probably a wise decision since I have had three distinct tumours already. There is so much that is unknown about cancer - I think that somewhere in my DNA there's a switch that has been turned on that tells my body to make cancer. The fewer spots I give tumours to land, the better.

I could get genetic testing faster if I pay for it, which I could do...but it won't change anything so I might as well wait. I have a daughter and granddaughter and would like to know for their sakes - but they are still years away from it being a concern (hopefully!)

Andrea

Jazzygirl

Andrea- I hope you get some answers about your cancers, and that you get through all your upcoming surgeries.

I do believe there is something that flips the switch for us that leads to cancer. Because there are always cancer cells in our body and our system normally takes care of them until it doesn't. Several of the oncologists I talked to initially used the "flip the switch" term with me as well. I know once you have one kind of cancer, you are at risk for others.

Besides bc, I had a skin cancer last year (basal cell) on my scalp that was removed. Basal cell is common and not as bad as some, but my dermatologist told me you have to get on top of them because they can grow and spread. She told me of such a patient who came to her to remove a spot that had been removed elsewhere in the past, and grew back very large. Too large for her to take on in her office. She told me the woman had her basal cell met to other areas and was not doing well. I take all cancers seriously, including skin cancer.

Gully

Hello to all my sister Bilaterals!

Interesting read about the differences in PR's. I had two oncotypes Left was 19 and right was 5 diagnosed at 45. I tested negative for the BRAC 1 and 2 but now wonder if I should ask to be tested for Cowden's since I have had thyroid issues as well (benign tumor removed age 24) I too have a daughter age 21 who has already had a fibroid removed from her breast. I dont think bilateral is as rare as they claim.

Gully

NJ-Jen

Hello. I just got diagnosed with idc in both at the same time. Just learning the lingo and doing the tests. They are small, should be no mets, and waiting on a surgery date (#14) and hoping for a diep. I am negative for brca but going for more extensive testing as quite a bit of family history on both sides. Mine only showed up in MRI after I bled from one side. All mammo's normal.

Jazzygirl

NJ- Jen- sorry to hear about your dx, but early and small is the best news in any of this. One of mine was found by mammo, the other by MRI. I hope you get your surgery date soon and keep us posted. I know this is very overwhelming news.

exercise_guru

NJ- Jen that is a relief that they were thorough enough to find both though? Walking through those decisions is challenging. Remember they can test everything a second time when it is removed after the surgery and they can oncotype it if its big enough. Its challenging to have the strength to get the questions you need answered but we really are our own best patient advocates. Its ok to get a second and third opinion and its ok to look around for a good plastic surgeon/ breast surgeon if needed. I found this to be the hardest as I felt I wanted to take action but its ok to make sure all your questions are answered.

avmom

I just found this thread, and thought I'd join in.


I was diagnosed with IDC in my right Breast in January of this year, after developing a small crease just above my right nipple in Nivember 2014. No palpable lump, but on mx in January 2015, had 4.5 cm IDC and extensive (8.5 x 8.5 x 3 cm) DCIS, which didn't show up,on either ultrasound or mammogram. After chemo, I elected to have a prophylactic mx on the left side, because my Breast tissue doesn't image well, either mammo or ultrasound. Mx was done October 20, and the initial pathology report found over 6.3 cm DCIS, as well as LCIS, despite having an absolutely clear diagnostic mammogram and ultrasound in December and no palpable lumps on numerous exams, and has clearly been there for some time, so clearly had bilateral disease.
I'm still recovering from that mx, having developed a post operative infection, but am still pretty shaken that the left mx was elective - my BS and oncologist were agreed that surveillance would be the normal course of action, but imaging problems due to dense breast tissue made an mx a reasonable choice. I'm trying to focus on being relieved that it's gone now, and surgery is the SOC for both DCIS and LCIS, so no further chemo is required. I'm still waiting on receptor status, so if it is Receptor positive, there might be some follow up meds I can take. My right Breast was triple negative, so I'm not on Tamoxifen or Herceptin, at present.
I've done some looking, and it seems that mammography has about a 10% false negative rate, particularly for dense tissue. Just lucky, I guess. Im grateful for this thread, and will be doing some looking at the various research on this thread. It's nice to know that there are others in this crazy boat.

SummerAngel

Avmom, I've read that mammography is very accurate for fatty breasts, but lower for dense breasts. The Mayo Clinic site lists accuracy of mammography as a whole at 80% (http://www.mayoclinic.org/tests-procedures/mammogr...). A study done in 2002 found that only 48% of cancers were found by mammography for those with the densest breasts (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC116948...).

exercise_guru

avmom

The found the IDC in my right breast after surgery they had performed two biopsies and quite a few mammograms and did not find it. they thought it was just DCIS.

I was very relieved that I had the BMX but it was a hard decision to make. I am sure that was a big shock. I am glad that you were able to make decisions that turned for the best in your treatment.

NJ-Jen

My docs were pretty shocked to see I was receptor positive I think as I have no ovaries and no adrenals (I have a horrible health history) so no source of estrogen. I was on a small bio identical patch off and on, but due to endometriosis, was not on it all the time since my hyst. So they said a bmx was a better choice, and the meds after are 10 years.

I think the bmx is a good choice in my situation.

Jazzygirl

NJ-Jen: well they say the body can make estrogen without the ovaries and adrenals. I don't think we can ever really get it down to zero. I think you have gotten some good info for your surgery decision. Never an easy decision though.

Honeybabe

Hi all, have just joined this site and am finding it hard to navigate my way round these forums!! So hopefully am in right bit now!! Have been trying to find similar situations to mine with the bilateral cancer and at last I'm not so alone!! I'm from England so obviously a smaller number of women with it!! I discovered my lump in my right breast (nipple really) so then sent for mammogram as only 46 so hadnt had one yet!! And they found another non palpable one in my left!!! So waiting till 50 would have been a different story!! Anyway bilateral mastectomy a no brainer for me as couldn't face the uncertainty of future mammograms. Also my tumours were acting differently!! Oestrogen positive in one and tnbc in the other!! Really didn't want to be that special but finding this site guess I'm not so special anymore!! Also just wanted to add some really positive hope and that is as soon as I was diagnosed so I found out about many other women with breast cancer! And there is one other lady whom I contacted (as a friend of a friend) who had it in both breasts, IDC and high grades who is 17 years down the line so there is always light at the end of this very long tunnel!! Be so good to talk with fellow peeps. Much love x

Englishmummy

Hi Honeybabe, welcome to ' The Club'. I am also from England (full blown Essex girl) but live in the US (completely out of my depth in Colorado). I was 41 @dx and like you could feel the right side but had a smaller non palpable one in the left. I am 6 months from my bmx and 2 months from reconstruction. Feeling ace physically, working on catching up on the mental side....that's taking time and effort to not live in constant fear, but am getting there. I keep the hope that perhaps they really are making great strides with this disease. The ladies here are down-to-earth, informative and respectful, I know you'll be able to draw strength and support from them. Brilliant news on the bi-lateral survivor, of 17 years, that's made my day! Thanks for sharing and stay strong. Hugs, Laura x

Jazzygirl

Welcome Honeybabe. I think we are still a pretty rare bunch, but also very glad to hear you have met a long time survivor. I have not ever met anyone with bilateral, except here on BCO. Hearing of a long time survivor is very encouraging too.

BarredOwl

Hi all:

Another one here.

BarredOwl

---

Age 52 at diagnosis - Synchronous bilateral breast cancer - Stage IA IDC - BRCA negative; Bilateral mastectomy and SNB without reconstruction 9/2013

Dx Right: ER+PR+ DCIS (5+ cm) with IDC (1.5 mm) and micro-invasion < 1 mm; Grade 2 (IDC); 0/4 nodes.

Dx Left: ER+PR+ DCIS (5+ cm); Grade 2 (majority) and grade 3; isolated tumor cells in 1/1 nodes (pN0i+(sn)).

Jazzygirl

Hi Barred- welcome to this thread. Love your handle too!

Honeybabe

Great to have replies so quickly!! Especially as you all so far away!! Im from Brighton englishmummy so a Sussex girl lol. It is so great to talk to women in similar situations as ive said before have wonderful family and friends but it can still be so lonely at times!! What upset me in the beginning was everybody telling me I had to be positive etc etc and if not they seemed to say I wouldn't do so well!! Great thank you very much really need that!!! As I've just worked out its not that we not positive, the feeling low and down is from the fear of it all not from being negative. I have always been a positive person just this little situation rather a massive impact on my life which I guess if people havent experienced then how can they understand. They all mean well really but golly it does test your strength and courage in every aspect of life doesn't it. So glad I could share the 17 year survivor with you!! She had reconstruction via a tram flap but advised me against it. Just wondered what you guys have experienced as being diabetic (insulin dependant) I have waited re reconatruction as wanted to heal properly. Just finishing chemo so will probably have it done early next year. Any advice on reconstruction? Thanks

Englishmummy

(waving at Barred Owl) -

Honey, Love, love, love Brighton. I would always go there on my days off (I was a flight attendant for Virgin) - miss the beach and all the little shops.

I did high profile gummies (anatomical), did not have enough skin to do anything else and to my mind, donor skin was worse than silicone but that's just my own quirky ideas... I am VERY happy with them. I have had them 2 months and they have intergrated well! I am back to doing full workouts, planks, push ups etc and have been for several weeks. I don't *think* I have any co-morbidities but after this, who the heck knows! So I can't speak to the diabetes side of things although, there is a forum for that!

There are several forums on here addressing reconstruction and exchange. Search out Whippetmom - she is stellar at matching you to your boobs!! There is also an exchange forum aswell as what bra's to buy, but my computer won't let me post links at this moment. Lots of people choose to not reconstruct, but I knew that wasn't for me,although I admire those that don't.

As far as being positive, well of course you *should* be, and from the sounds of your writing, you are....most of the time, me too. But sometimes it washes over you in waves (that was me this morning, 'til I read about your lady of 17 years - it really did make my day and changed my mood). Just be genuine. Happy, sad or indifferent. I sometimes think about if I am not here for my 3 children but you know what, even before this, I had no guarantee of a long life, I just didn't think about it (being healthy and only 41!!).....now I do...frequently, but it has gotten less as the months tick on. I can only control what I can: I live a healthy, happy life and really I think that is all we can do - this b*&ch of a disease holds the cards and we have no crystal ball. Let your emotions be what they will, I personally believe that it is more stressful to you to deny your feelings than to just let them be what they are (unless you are in the depths of depression and can't break out). I think being a little maudlin *can* help you regain a better outlook and perspective. You break down sometimes, just so as you can rebuild even stronger and cope with the path ahead - you are your very own Phoenix rising from the ashes. In some ways, on some days, we can choose to be happy, sad - whatever, but sometimes it is just not a choice - there's no shame either way, but you are right, unless someone has been through this, they have no idea how it affects one emotionally. With the best of intent, their advice/good cheer is somewhat lacking in the understanding department.

Good Luck with the rest of your Chemo - feel free to message me if you want to know any more about recon or if you can't find those other threads.

Jazzygirl

For some of the folks here who are more newly diagnosed, in treatment and going for recon, being three years out, I will say I lived in fear for a good couple years about everything. I won't say every day gets easier, but after you get used to the follow ups and the longer you go without any new findings, the more you feel you can feel small healing releases and learn to exhale a bit.

Just as Englishmum says, note everyone gets this either. The emotional part of this is not like anything else I have been through (and trust me, there have been difficult times before this). Having something that could take your life hits every fear button in your body. I had some great friends step up during my time of need and have stuck around since. Others were less understanding and with time, those relationships have gone. Everything in between too. People either get it or they don't. Don't worry about making people feel okay about any of this. You can't and they won't anyways.

That is why BCO is so awesome. A safe place to talk about things without judgement.

Paxton29

Hi to my fellow rare and exclusive club members! None of my doctors have said I was unusual simply because of it, per se, but one of the reasons I'll be doing chemo is the bilateral findings. I can't really tell, and probably don't want to know, what "slightly" worse prognosis really means. But it doesn't seem as if the rarity is necessarily equivalent to "worse to have." More like, they're not sure, but there aren't strong findings, due in part to small sample size. This thing is such a crapshoot anyway. It makes more sense to me that treatment outcomes should be similar to unilateral if based on same characteristics. But we are all so different, and I'm not sure they truly sort as well as they could. Who know

I'm really glad I chose BMX. I would not have wanted to go back again. Given that my oh--it-was-actually-IDC side had a 9 mm size, ki67 of 4, and is ER and PR +/ HER2 -, it could have been a worse surprise. My surgeon said the negative lymph node far outweighed the right side IDC, as far as good news/bad news. Granted they only did the SLNB on the left, which had the bigger tumor (2.5 cm, grade 2), but doing rads right side for sure anyway.

Jazzygirl

Paxton- I hope you are doing okay post surgery and that chemo and rads will go okay. Keep in touch with us here and let us know how we can help you?

woodstock99

Hi All - having surgery next week and been up late past few nights reading lots of posts in different sections of this site and came across this thread and curious about how bilateral is defined as cancer was found in both my breasts but my BS never said anything to me in these terms. Calcifications were detected on annual mammogram late October in left breast. Had stereotactic biopsy on the larger area (there was a smaller area not biopsied at that time) on 11/5. That came back stage 2-3 DCIS. Then had MRI a week later. They found 2 suspicious areas in right breast not on mammogram. Had those biopsied via MRI biopsy & the additional small area on left breast done by another stereotactic biopsy right before Thanksgiving. The 2 area on right breast were diagnosed as Stage 0 DCIS and surprisingly the small area in left was stage 1A. 5% growth rate. All ER/PR +, Her2 -. Does this mean I have bilateral cancer or as my BS put cancer in both breasts but she never indicated that this meant anything more serious in terms of recurrence. UI was told 99% in right breast all DCSI and 97% in left with Stage 1A. I am having double mastectomy & SNB next week. If nothing more is found, no chemo or rads but AI. She is not doing any Oncotype or other testing. I will be 63 in March. No close family history of BC. Had benign fibroadenomas 3x previously - 2 in my late teens in college and one when I was about 41. Thanks,

Jazzygirl

Balthus- you and I have some similar pathology although maybe in different places. I had IDC on the left, some DCIS on the right. They did Oncotype on both to help decide about chemo. The DCIS was low (12) and the IDC was intermediate (23). there was no good clinical data on the intermediate values to know if it was going to help me more than harm me. Therefore, my MO's felt I would be over treating my cancer with chemo given everything was very early and small. I have been on the AIs for almost 3 years now.

I think if you have cancer findings in both sides, even if one is DCIS, the stuff just hanging out but not growing, they still consider it cancer. My doc did surgery on both sides (double lumpectomy) and internal rads on both sides. My doctors approached my treatment from the IDC perspective, but took care of both areas with surgery rads and of course, the drugs are systemic to keep estrogen down.

No one told me I had a worst prognosis because it was on both sides. I was told that it is usually more indicative of a genetic link, but have had many genetics tests and nothing came up yet.

woodstock99

My BS says no need for Oncotype since i am not having chemo or rads but I get confused about whether I should press for this. Thanks.