Anyone else 'double trouble'?

Hi Martine - yes, it seems we are indeed a rare breed.  I do wonder if I had understood how rare when I was first diagnosed if I too would have opted for mastectomy straight away rather than lumpectomy, but it sounds like your situation was more aggressive than mine as both mine are PR+, ER+ but HR- and grade 1 with no node involvement.  I am an academic so have access to academic and medical literature online and can't help researching recurrence risks for bilateral BC, but the rare nature means small sample sizes and not much research!  
I guess we all live with the fear of recurrence, but like you I want to minimize that risk!
Thanks for connecting and for your story - I hope you are now doing well. Libby

Hi Libby

Totally agree on the rarity of our situation!!

I was diagnosed back in Sept 2014 with bilateral BC, node involvement in left side only – both tumours occurring in same location in each breast!!  I did have the option of a lumpectomies and associated treatment but chose to have bilateral mastectomy with immediate DIEP reconstruction.  With BC occurring in both breasts at the same time (plus node involvement) I did not feel safe in just having the lumpectomies, knowing I would be completely stressed, awaiting a possible recurrence.  My lovely surgeon was supportive of either treatment options.

Each tumour had a different (but similar) diagnosis and I was treated overall as HER2+ with 4 x FEC, 12 X weekly Taxol, 12mths Herceptin and 28 radiation zaps to left breast only.  I had my surgery after completion of radiation.  Started Femara in July 2015 and switched to Arimidex in March 2016 – will be taking these for at least 5yrs, maybe 10yrs and receiving calcium infusions every 6mths with only a couple more to go. 

With only one paternal aunt diagnosed in our family there was discussion about genetic testing, but advised there was no real concern so did not proceed.

 Perhaps if only one breast was involved my surgery decision may have leaned towards a lumpectomy and I think this would have been a harder decision with more outcomes to consider: - how ‘different’ my affected breast would have been Vs my normal breast, stress awaiting recurrence in either breast etc.  Again, I could have gone the mastectomy route also.

 I feel as though I have done all I can to eradicate BC from my life but as many ladies here will attest there is always the fear it has found its way elsewhere and gathering its forces for another strike!  Cheers, Martine

Thanks @LMK74 and hello @Mrs_H
Jen, thanks for your response to my post.  I was feeling quite lonely with bilateral BC.
It's great to hear that you had a good response to the chemo and I'm sorry to hear that you now need more surgery.
Like you I also had no idea that synchronous bilateral BC was rare.  Unlike you, my surgeon wants me to get the results of my BRCA test before deciding next steps.  I'm older than you (47) and my tumors were not very aggressive (grade 1) and small; so I've had the lumpectomies already (with a re-excision on the right) and clear SNBs on both sides with no requirement for chemo, but need radiotherapy.  I need to decide on having/not a double mastectomy before that though, which my surgeon said is an option if I have a BRCA mutation.  
Like you I am concerned about recurrence, but I can't find any info in the literature about the relationship between synchronous bilateral BC and increased (or not) likelihood of recurrence/survivor-ship if I don't have BRCA. It's my key question for him when I see him next! My Dr has said that bilateral is very rare and that is why he wanted me to do the genetic testing, but hasn't really commented on what it might mean for recurrence/treatment beyond that - he has a very 'let's cross that bridge when we get to it'. I sense that will be our next conversation :-)
Thank you again for your response and best of luck with your surgery.
Take care, Libby 
   

Thanks @LMK74, just scrolling through when I saw this.

Hi @water_nymph, I was diagnosed with BC in April this year. I found a lump in my right breast and when doing the ultrasound, they found a matching one on the left side. Biopsy confirmed that both were indeed cancer.

I've just finished 5 months chemo and will be having a double mastectomy with right side aux clearance and left side sentinel node biopsy.

It has changed my surgery options as I had no idea that this was as rare as it is until my surgeon kept saying she would be very concerned if I did anything less than double mastectomy despite having a great response to the chemo. Hence I'm now having more surgery. It's more than I would like to have but also given my age (29), it seems the best option to minimise recurrence.

I will also have to have genetic testing due to the rarity factor. That will happen after surgery.

Have your doctors suggested this will have an impact on your treatment options? Cheers, Jen.

Hi @water_nymph, there is another lady on here I think with bilateral . @Mrs_H might be able to tell you her experience.

Thanks Kath. I have a feeling I won't get many replies to my post as my surgeon said bilateral at the same time is about 2% of all cases. I'm keen to understand if it increases the likelihood of reoccurrence (irrespective of BRCA test outcome) as he said even if this isn't a BRCA mutation there's something going on genetically for 2 unrelated tumours to pop up at the same time

I didn't but my Aunt did...but not at same time. Because of her experience and my breast density my decision was a bilateral mastectomy with reconstruction. I just didn't think I could trust my breasts again. I had genetic testing done to see if I should have ovaries out. I had no identifiable gene at this time. Which was a huge relief.

Lots to think about initially. Kath x