Bilateral Breast Cancer

KBP

Hi AndreaC et al,

I am sorry for your bilateral news. It is hard to be prepared for one thing and then have additional news and decisions to be made.

Sounds like you have a good team you can trust. That has been an important factor me all this time. 

Let us know how you are doing.

 I rarely talk about living this life style with anyone even though I have a busy social life. Cancer is plain scary for most to handle.

 Thanks for chiming in!

Kirsten from New Hampshire

AndreaC

Thanks Kirsten. I had a BMX March 26. Turns out that the two tumours were different - ER and PR positive on left side, negative on right. Both tumours were HER2 negative. I am doing well postop - pain is less every day. I have four drains - saw my surgeon today and they can't come out yet because they're draining too much. I see her again in a week, hopefully they will be removed then - they are a pain (literally!)

The pathology came back...there is lymph node involvement on the left side but not on the right. So not the best news, but I knew I would have to have chemo anyway. Not sure if I will need radiation as well.

KBP

Hi AndreaC,

You must feel like you are in a whirlpool! I remember that feeling of so many decisions happening fast.

I kept a pain journal with a list of the meds and time I took stuff. I wanted to see what was working and not. I needed an accounting to help me remember.

I kept it as long as I was dealing with around the clock pain management.

Glad to hear you are noticing improvement. One hard thing about bilateral is not having another side to compare wellness.

Treatment is state of the art these days.  I'm glad you are on this forum.

Btw, I can't believe we had 3" of snow again today! Crazy long winter. Hope for spring!

Gentle gentle hugs to you in British Columbia.

Kirsten

AndreaC

Thanks Kirsten, hope your snow is gone! Beautiful mild weather here, feels almost summery!

Still have one drain, hopefully it will come out tomorrow. I have a PET scan scheduled for Tuesday. I had requested it because I have now had a total of three small tumours...one colon, two breast...and I am concerned that there are others too small to be seen on a CT. Luckily my oncologist is on board. I see my local oncologist for the first time on Thursday and will discuss chemo. I guess it's time to go wig shopping! A good opportunity to change my look!

And yes, I will be having radiation too, once the chemo is finished. So much going on but I am doing well...no pain now, scar healing well. I have some sports bras but don't wear them much, they feel too tight...I think they will feel better once some of the swelling goes down under my arms. I am comfortable without a bra.

Life goes on, and it is good. My challenge is to not talk about cancer incessantly with other people, because I think about it so much. That's why this forum s so good, that's what we're all here for...to share stories and learn from others.

Cheers, Andrea

SummerAngel

I just the results of a biopsy today and now I'm in the synchronous boat as well.

The biopsy also found both DCIS and LCIS, which wasn't too surprising because the radiologist said he had rarely seen as many concerning areas on an MRI before.

KBP

Hi AndreaC and SummerAngel-

I also appreciate these posts to channel my need to be in touch with others going through similar experiences.

SummerAngel,-Welcome!  It is very neat to find other bilateral gals...great support. 

Snow is finally gone!! Lots of sand and salt from the road to brush away. Grass is starting to green up.

I had all kinds of DCIS, LCIS, Hyperplasia, on both sides with one side the added bonus of ILC. I did bilateral lumpectomies w rads. 5 yrs out with Tamoxifen. 

I am working on trusting myself, trying to find a copacetic lifestyle theough all this,  as I make treatment decisions knowing that all the reports and data are averages and statistics, without any guarantee for absolute control and perfect outcomes.

I've decided to find one thing I can control each day. So I decided, I can have a cup of delicious hot coffee each morning!!!! Yay!! 

SummerAngel

KBP, good for you! I love my coffee as well! It sounds like you also had multiple "areas of concern". I just wish I could figure out what made my breasts do this, it's just crazy! I'm in for a BMX, though, since I can't have radiation due to connective tissue disease. Of course, the radiologist who did my biopsy last week pulled me aside after and told me that if I were reconsidering the BMX that I shouldn't. In fact, both my general surgeon and the radiologist told me I absolutely should have a BMX. I didn't really need any convincing, though!

KBP

Hoping for better and better research with successful results to figure out prevention.

I have  no history of any BC as far as I know, going back 5 generations. My maternal grandmother lived to 104!   Born in 1906.

Environment, aging, for me Estrogen! , all part of my picture. I have 4 adult daughters. My Oncologist said docs may have a good lead on the BC business by the time they reach their 40's.

Let's hope! 

Now where did I put my coffee cup down???? A good problem!!... ( my daily oxymoron)

Englishmummy

I know this thread is not super active but I thought perhaps I could rejuvenate it with a post....

I was diagnosed with sychronous bilateral breast cancer on May 22, 2015. I underwent a NSBMX on June 10,something I was not on the fence about. No family history of cancer and no other real risk factors - other than being female and 41.

I am going for genetic testing/counselling and I have to say that out of all of this nightmare, the guilt I carry; that I may have passed this to my beautiful children (ages 12, 10 & 8) is almost more than I can bear. I can't even stand that I 'made' them high risk....

Someone stated above - SummerAngel I think - that they wished they could figure out why their breasts did this, I do too as I really lived/live a healthy lifestyle all the way around. For my mind, it always comes back to what did 'I" do to make this happen? That is the hardest part - not having definitive answers and not really knowing where to pick up ....my MO told me to carry on as I was (eating organic, taking vitamin D, excercising, maintaining low BMI etc. etc.) but it doesn't feel like that did much good in preventing this....perhaps the testing will shed light on part of the mystery?

KBP

Thanks for rejuvenating this thread. I am sorry for your troubles. I went through all those same feelings for my 4 beautiful daughters. They are now 31, and 29, 26 & 22. No history of breast cancer in my family also. I went through wondering how I "let" cancer happen.

I am 56 yrs old, 5 1/2 years out from surgeries. Just finished with my tamoxifen treatment and had a clean 5 yr mammogram. So a milestone has been reached, and I carry on; still visiting my docs every six months. Those difficult thoughts still float in and out. However, ultimately, there is no controlling or being responsible for cancer. As tough as it is, it is a natural process to monitor. I've had to find ways and attitudes to live with a chronic illness. A new experience because I have been perfectly healthy up to my diagnosis. I did not even feel ill! But all the medicalization and treatment reaped havoc on my equilibrium.There are so many emotions caught up in BC. Our cancer center at Dartmouth Hitchcock in New Hampshire has a counselor to work through these big adjustments. I can't say I have adjusted or ever will entirely but I know that when the culpability thoughts arise I have some experience in putting them in their place.

I hope you are finding ways to be comfortable from your pain and are getting your rest. Sleep is a big factor in having the reserves to face these issues.

Thanks for reaching out.

SummerAngel

Englishmummy, I feel very much the same way. I just received the results of my genetic testing for known mutations. Nothing came up except a mutation of unknown significance on one gene, the genetic counselor said the genetic testing company will just put that in their database and wait for more data over time. On one hand I was VERY relieved that I don't have a known mutation I've passed on as I have two daughters, but then there was a tiny part of me that would have like to have something to point to and say, "See, THAT was it!" Frankly, I still think there's something genetic going on, I'm just hoping and praying my girls didn't get it. I've always been conscientious about my health, eating well and exercising. It just doesn't make sense to me that my breasts went so haywire. Of course, I could have been exposed to something along the way, too, or maybe a combination.

ksusan

I was diagnosed with DCIS grade 3 in the left breast, then a contralateral MRI showed DCIS grade 3, a non-palpable IDC, an affected intramammary node, and possible SLN (confirmed at surgery) on the right.

AndreaC

I was diagnosed in January with IDC breast cancer on the left side, with lobular features as well. In Feb. I had a screening CT which caught a IDC on the right side (it had been missed on the mammogram). I had a BMX in March, just finished chemo and am due to start radiation next week.

It pretty much sucks. I have stopped wondering if it was something I did to cause this...I have never been terribly athletic and I like potato chips too much, and I love anything cooked on a barbecue. If those things (and my other bad habits) cause cancer, then most people would have cancer. I think it's just plain bad luck. And in some cases, genetics. There is a lot of cancer in my family but I am the only known breast cancer. I am going for genetic testing though, because I have a daughter and granddaughter. I am also a colon cancer survivor.

Andrea

Peabrain

hello. Another bilateral gal here.

I had DCIS caught on a routine mammogram followed by biopsy. Then an MRI caught a small triple negative tumor on the other side. Becuase of the unusal combo and my heritage, a genetics test was recommended and BRCA positive result.

I was floored. There are plenty of other health risks in our family but I did not see BC coming. But the positive genetics did give me something to point to for the cause

I feel so incredibly lucky to have caught the second tumor so early and in such a sideways way. I have definitely had to rethink my views on screening and early mammograms, I am 47.

Did a BMX and turned out a couple lymph nodes had gone to the dark side as well. So now chemo, no radiation, and drugs don't work on the triple negs.

My doctors told me that bilateral diagnosis (at the same time) is less than 10%. By the time the diagnosis came together, my chances of genetics positive had climbed to 22% (from less than 1% for the average woman with BC diagnosis).

For what it's worth

Jazzygirl

Hi ladies- I have not been here for awhile, but there seem to be more ladies getting synchronistic bilateral cancer these days. When I went in for my last mammo, the tech and I were having a good talk and she said "having a cancer come back in the other breast after initial dx is not uncommon, two at once is not too common." Yes, we know.

Anyways, I am almost three years out now and just finished my 6 month check up, and all is well so far. I have a few more years on anastrazole, and the MO's office said at 5 years, they may re-evaluate if we will go another 5 years. I am doing Prolia shots to help with bone loss from the AIs. My doctors are pushing me to loose weight, as excess fat produces estrogen and for ER positive tumor, estrogen is not your friend. I spent 8 months with a personal trainer getting my fitness back, but find loosing weight pretty tough on the meds.

But I am here to say I am doing well and living fully three years out. Able to work, exercise regularly, but put myself and my health first now.

For those newly diagnosed, please do not blame yourself for getting cancer. As I have learned, cancer is many diseases and there are all kinds of breast cancer. I have been told that bilateral BC is almost always genetic, but have been tested and am negative. I have had the BRACA tests plus two more generations of genetics testing since my DX. There is no explaination for this, despite my BS desperately trying to prove I have a genetic cancer. My sister got a dx two months before me but she is older and it was a different kind of cancer. I have one uncle who had prostate, a second cousin who had bc in her 30s (may be genetic). We don't come from a strong history of cancer, but do have some. Cancer is a disease of our modern times. It is pretty much everywhere. I have had skin cancer too.

Like many here, I do not talk to a broader community about my bc and living with the longer term, because the folks that do know don't want to talk about it, and then there are a number of people I just never told (for professional reasons, but also did not want to have to deal with their feelings about it). And then there are those who acted like I had the flu or something! BCO is a great place to have conversations with the folks who get it and can listen to one another. I am grateful for this place.

I will stick around this thread again via My Favorites and wish you all continued good health, and blessings to those in treatment.

KBP

hi jazzygirl and all,

Great to hear from you. I'm just chiming in to let you know I enjoyed your post. It is really hard to find compassionate conversation about living with this process.

I'm really well. I have been released from taking tamoxifen after 5 1/2 years. I had a chemically inducedmenopause at 51 when I started tamoxifen. I'm discovering menopause for the first time drug free.

I follow this thread in my favorites too.

Take care.

Englishmummy

Bump

SummerAngel

I'm bumping this again to ask the bilateral BC women a couple of questions that I've been thinking about for a while now:

1. Did you get an Oncotype score on both tumors or only one side (or neither)?

2. How many of you got genetic testing done (extended), and what was the result?

I only received an Oncotype test on one side, but then read this study, which was very interesting as I am younger and the left-side PR was 90% while right-side was 50%: http://www.ncbi.nlm.nih.gov/pubmed/26340863

I also had extended testing which ended up with a rare variant of unknown significance on MLH1.

Jazzygirl

Summer Angel- here are some answers to your questions based on my case. I was age 52 at dx, had a very small IDC tumor on the left and then MRI during screening after DX found an area that was suspect and it turned out to be DCIS.

1) I had Onctotype done on both side. Left (IDC) was 23, and right (DCIS) and was 12. I did not have chemo, just surgery and rads.

2) I have had several rounds of genetics testing, which my BS has pushed for. I cannot tell you what they were now, would need to dig into my file, but every new generation, she pushes for me to do another round. I think the last round was one that had genes tied to pancreatic, melanoma, and some other types of cancer. All my genetics tests from the initial BRACA gene to extended testing has been negative.

I won't do any more genetics testing. It is expensive, and this BS office has been very bad about getting things approved with insurance, which has lead to a lot of struggle and appeals with insurance to get them paid for. Many of them were not, but it was between the lab and BS office because they did not do the approvals needed. My ONCOType genetics testing was approved, then denied, but we appealed and those got paid. Easier because they tie directly to patient care, decisions around chemo, etc.

I don't have any children and have one sister who had BC at the same time as I did (not bilateral), so outside of my doctor's curiosity and medical research, I see no value to me to do anything more here. If it turns out it was genetic, not much I can do about it at this point. My BS says most bilateral is genetic.

It sounds like your genetics tests yielded a finding on one of the other less common genes. I hope that is helping to you and your family to know how to help others in your immediate circle. I think genetics testing is a slippery slope in terms of the pros and cons of knowing.

Let me know if you have any questions?

Englishmummy

Summer, it must be ESP. I have been going insane looking at data regarding this too as I just got the results from genetic testing. I have no family history of BC and very limited cancer in our family (lifestyle cancers is what my onco called them).

Ok. I had Oncotype on the Right (larger lesion) I was told that both lesions were similar in histology (ER+ 99%, ki67 was 8 - both Her2-) and the left was tubular, so no need to do the Ocotype on that side?

I did get extended genetic testing done - wish I did not now, as I will spend however long fretting over the stupid thing; I agree with Jazzy, it is a slippery slope especially when they don't know what something is or isn't.

I was negative for all breast cancer genes but had a very rare VUS on Chek2....noted in 3 other patients, men??? Although I am still waiting on the paperwork to see with my own eyes what was found. I am curious if Genedx is a world wide data base or just here in the US? Being from England, I began wonder if there are more people with this variant in Europe - do they confer with other labs if they only use data from patients here?

Who did your genetics panel? It seems that the VUS's vary from lab to lab from what I have read. I am wondering if I should worry more about recurrence or going mental, driving myself insane with all 'gifts' that come our way?

Edited: corrected pathology from surgery, memory was of biopsy...they changed slightly.

SummerAngel

Interesting replies, thanks! So Jazzygirl, you did have a variant on one of your genes? Do you know which one?

Englishmummy, we do seem to be pondering the same things! Can you tell me what the PR values for each of your tumors were? (Again, curious if your circumstances fit the study I found.)

My panel was also done by GeneDX. From what I read, GeneDX does do testing internationally. When you get your results most likely you will be given info about registering with the PROMPT study (https://connect.patientcrossroads.org/?org=prompt ). I did, and I think it's a good idea, especially with the more unusual variants. The variant I have is called p.Met383Thr, and it was found in one other person that has been noted in another study, a woman with ovarian cancer. I think I found the study here: http://www.nature.com/bjc/journal/v107/n10/full/bj... In this study there is a chart listing the variant as "Predicted Pathogenic", although of course it's not known at this point.

Jazzygirl

Summerangel- no variants for me. Might be the person who posted after me?

SummerAngel

No, I just misread your reply!

Englishmummy

SummerAngel, I don't mind sharing at all - my right side was 75% and the left side was 10% on the PR+. Yes, I would sign up for any study in the hopes it may help someone, at some point.

I know you have girls too; my GC told me that Bilateral BC counts as 2 first-degree relatives with BC and therefore, they are high risk - have you heard that? I don't care for my GC at all.

 This whole thing makes me so sad.....and worried.

SummerAngel

Looks like you have a large variation in PR as well! Hmm, that's interesting.

I was NOT told that about bilateral BC! Yikes, that's not pleasant! I am worried for my girls, especially my younger who really takes after me. Of course, I take after my mother (a lot), and there is zero BC on her side, so I had always assumed I was in the clear genetically. In fact, when I found the lump on the left side I was sure it was a cyst because my mom is prone to them. Shows what assumptions can do!

Englishmummy

Yes, the variance is pretty big - I'm going to read your link later (we are schooling right now so I am on here in bursts) but I am really interested in this.

My girls are both the spit of me, and like you, I am the spit of my mother - no BC for her either. I was at my Obgyn's when the GC called and I got upset (not quite sure why when all they know  about right now is negative).I have known her 15 years, she swore to me that in 10 years the medical landscape would be sooooo different that I should not worry so much for my girls as they are so young (12 and 9), but that is easier said than done. I just ran a risk calculator (more for my sister than my girls right now) for what it's worth, and it came out to 28% lifetime risk to age 90, I guess that means 72% chance of no BC, right?

Jazzygirl

I think for you ladies with daughters, genetics tests make a whole lot of sense. That way, your daughters will have the information to decide later on in life if they want to get a test. Also true if you have sisters. If nothing else, it may help their doctors to screen them more closely earlier in life.

SummerAngel

I read something about a 30% lifetime risk if you have a first-degree relative under 50 with bilateral BC, so that calculator seems right. That's not great, but it's not horrible, either. It's true that things are rapidly changing, too. My girls are 16 and almost 20, though.

I found this as well, not so great: http://www.cancernetwork.com/cancer-management/bre...

"The overall relative risk of breast cancer in a woman with a positive family history in a first-degree relative (mother, daughter, or sister) is 1.7. Premenopausal onset of the disease in a first-degree relative is associated with a threefold increase in breast cancer risk, whereas postmenopausal diagnosis increases the relative risk by only 1.5. When the first-degree relative has bilateral disease, there is a fivefold increase in risk. The relative risk for a woman whose first-degree relative developed bilateral breast cancer prior to menopause is nearly 9."

SummerAngel

Jazzygirl, I also have two sisters! My older sister is 48 and gets regular screenings. My younger sister is 44 and has never had a screening of any kind. I keep bothering her about it, actually.

Englishmummy

I JUST read that same article - makes me want to throw up.....I keep trying to remember something a wonderful lady told me ..."predisposed doesn't mean predetermined".

My sister is 38 and my mum and I have bugged her continuously about screenings since my dx. Things are really rough for her and I know she doesn't put herself first (what mum does?) - and she tends to be a bit of an ostrich, rather not know or deal with things!  She is in the UK and just thinks they won't screen her until she's 40, but NHS guidelines dictate that it can be sooner if sufficient reason ie. first-degree family member. But, you can only lead a horse....