Bilateral Breast Cancer

That is an interesting article, thanks for sharing that. Lots of good info in there. Interesting that the left side is more commonly involved.

Englishmumm-I hope you can encourage your sister to get a mammo when she has the time. Do you live in the same area as your sister? Could you possibly go with her to the first one? I think getting past that first time is so hard for most women.

Here is what happened to me and my sister. She found a lump and went to have it checked by her PCP. She was immediately sent to imaging and then immediately to get a biopsy, all the same day. I knew it was not going to be good news. No one moves that fast without a big worry. She got the results the next day and was scheduled for chemo to begin three weeks later.

That was June-July of 2012, I went in August of 2012 for my annual physicals and mammo. I had been doing mammos since age 39 and had had one biopsy previously (benign) after my baseline was dine and calcifications were found. When I went in that August, I felt I was looked at completely differently by my doctors with the knowledge my sister had been diagnosed. They were going over me with a fine-tooth comb!

My films indicated a very small area on the left side that had been there for awhile (I had changed imaging centers that year), that in the other previous films did not look like anything of concern, but in the one that year, it was different, larger. The radiologist said "something has changed" and I knew right then it was cancer. We biopsied and it came up as DCIS/IDC and then the MRI on the other side found the other DCIS area. I was not surprised, although certainly not happy to hear this news.

So if your sister goes, they may look at her closely. As we all know, the earlier this junk is found, the better the chance of successful treatment and continued good life. Early detection is key.

L2 girl- it has been my BS who has pushed for the genetics testing, not the MO. BRACA tests are pretty easy to get done and get paid for, the newer generations of genetics testing are tougher to get approved by insurance. The mistake I made was being pressured to do those tests right away in my follow up apts vs. saying "let me think about it." Now when it comes up, I say "let me think about it". My BS is doing a lot of research and teaching around cancer genetics, she is very cutting edge.

I would ask whomever it is you do your follow ups with what the latest genetic panels are for BC and if you are a good candidate? With what you have shared, the strong family history, I think you should have no problem getting approved. Then you can go research those tests and bring those back here for more questions. Seems like there is a new panel of cancer genes to screen, that include Bc genese, every few years.

Questions?

Summerangel- my last two rounds of genetics tests were like $7K each. Both times they were denied. Know that unless you sign something that says you want those tests outside of insurance, you are not obligated to pay for anything for them.

Because my BS office did not bother to get the approvals on the last one, I got a bill for $7K too. I talked to the lab and they said they were still trying to work things out with the doctors office and insurance. I said "so I don't have to pay you?" and she said no. This is where you need to be careful, they will send a bill hoping you will pay it as they just want their money from somebody. They don't care who they get it from.

I am glad you are going to see a genetics counselor. That is definitely the right way to go to get the support you need during the extended testing, so you can get info on how to advise your family in the future about any risks or tests they can do. I assume given your age, your girls are still pretty young.

Jazzy, thanks for sharing your story, it really presses home how this can work and yes, the sooner this 'junk' is found, the better. I am not near my sister, unfortunately. I now live in Colorado (I have done for almost 20 years) and she still lives in London. If I were there I would drag her to the nearest centre and get her looked at, but alas, I am not.....but I will keep working on her until she at least gets a baseline.

L2, I was put in touch with a genetic counsellor due to my age and a bilateral diagnosis - in four generations we have/had plenty of girls in our family but so far only me with this horrid dx - and I am the second youngest girl, only my sister is younger. I would talk to a counsellor for sure although if I am honest, my worst appointments were with the genetics counsellor; I just did not jive well with her. She spoke in riddles and statistics and I left there feeling sad and fearful. She was so sure I would come out as BRCA, she even predicted BRCA 1. I totally get doing it for your children, that is the only reason I did it, otherwise it is a case of TMI for me, mentally.

That is good to know. Some of those numbers have a lot of 0000's. My GC told me that they have to call you, legally, if your contribution is to be over $100, otherwise that is all you can be out of pocket unless you have agreed to pay up front.

I am so shocked by some of the bills that BC patients have to pay. Who needs added financial stress when dealing with the beast? I have been lucky; we have stellar insurance, but I also understand that is not the norm.

@English: Yes, two completely different types! I could not find statistics on how often this happens. Bilateral occurrence is about 10%, so maybe 1-2%? This diagnosis is nearly always associated with a genetic mutation.

Since the left side was the tumor and Stage II lymph node involvement, all my treatment focuses on that triple negative diagnosis. My MO has said I will not have to take hormone blockers after. I will mostly be done after the chemo.

I will have to remove my ovaries (50% chance of cancer there for me) and then get checked for cancer markers in the blood every year for the rest of my life (focus on metastasis of breat cancer, pancreatic cancer and melanoma).

Overall, I feel incredibly lucky because the right side (Stage 0) was picked up on the mammogram, but the tumor on the left wasn't found until the follow up MRI. If the DCIS hadn't been caught, it would have been at least another year for the nasty aggressive tumor to be found on the next mammogram. Oof!

L2- I cannot believe they refused to pay for your MRI. My MRI also found the DCIS in my other breast. Not medically necessary? It is standard of care to do that test after dx.

Peabrain, Thank you for answering my questions, I admire your strength. It seems you got great counselling and a sound treatment plan. I did a bmx too but I am one that would have done it with a single dx - because I am such a worrier. Removing the ovaries makes complete sense to me. It really seems you have embraced your knowledge, and chose to use it to its maximum benefit, for you and your family.

Yes Summer, I agree, the pay-it-forward factor, for want of a better phrase, is reason and motivation enough for testing.

I truly appreciate all the positives that you have all pointed out....not sure if it is the fact I see the onco tomorrow, the stupid VUS, or just plain ole fear but it's been a rough week,so far...mentally. Your perspectives help curtail it some. Thanks.

Englishmummy, If your experience is anything like mine, the exchange surgery provides a very nice change! I couldn't believe how much better my chest felt, pretty much right away. I was able to sleep on my sides within a week of surgery, and just in general it was fantastic to have the hard TEs out. I hope you experience the same!

I had it done under general, but was only tired and sore for a few days. I was back at work full time in a week. My energy was low the first week but improved steadily after that. I felt completely fine and able to return to working out (lower-impact by PS' orders) after two weeks. I tend to heal quickly, though.

I did have fat grafting, he took it from my inner thighs. That was by far the area that hurt the most, my inner thighs turned dark purple-black for a couple of weeks. Besides that the area he injected the fat into (the upper pole area) was a little sore, felt a bit bruised. That was it, though! He's going to do more fat grafting when I have the nipple surgery in December, too. Not sure where he'll take it from this time.

Sounds like you'll be fine, I wouldn't worry if I were you!

Andrea - wow, that is a long time to wait! I have been following your progress on your Chemo April thread (you women are having too much fun bonding over there : ), but I didn't realize you were bilateral like me.

Do you know if they will recommend hormone therapy for you after? My MO has said no for me, and I would be happy to get to skip it, but it confuses me a little bit. Probably it's because my positive side was still Stage 0.

Do you have a guess on what your genetic results old end up? (Not that I was at all accurate.)

Thanks Englishmummy w for inviting me over to this thread

I too have Synchronous bilateral cancer My left side is HER2+ but they thought the Right side was DCIS. Because it was throughout my breast they did a Biopsy of both. They felt the DCIS was to extensive to save my right side so I elected to have a double mastectomy. After my mastectomy they found that I actually had two tumors in the right side that were ER+PR+HER-. I am grateful to this day that I had the double mastectomy. Its very frusterating that the imaging is not that good yet. More frusterating that I was 42 when it was discovered.

OH and I should mention that before I had my Double Mastectomy my first genetics panel came back BRCA- after I had surgery I found out I have PABL2.

They are basically treating both Tumors as primaries since Left HER+ right ER/PR+ so

Double Mastectomy

Chemotherapy TCH

Hysterectomy

Aromatase therapy

Jazzygirl Thanks I will check out hystersisisters.

I have a lot going on with my diagnosis. My Breast MO feels that with all my factors Age-42, bilateral breast cancer and ER+ that Arimidex and ovary removal will help the most to prevent recurrence. also it allows me to get on Arimidex sooner a they won't have to wait for Lupron to kick in. The PALB2 Gene seems to worry my Gyno-Mo on the cancer team. He recommended Hysterectomy 4 weeks after chemo finished. He is concerned about ovarian cancer which is difficult to detect. Both told me that with PALB2 it might take 10-20 years to totally understand what the risks are.

It overwhelmed me quite a bit because I thought I would be done after reconstruction. I am young I am worried about all the long term side effects from the surgery. Facing menopause and Arimidex. I am still debating getting second opinions but with all I have going on I find their logic sound.

Regarding having double breast cancer I have read how they try to treat it. It seems like they use whatever tools they can. In my case Chemo/Herceptin and Hormone therapy. Ofcourse bilateral is rare so recurance and all of that are unpredictable.