Anyone else 'double trouble'?

water_nymph

Hi there lovely BCN!
After the whirlwind of diagnosis, lumpectomies and reexcision over the last 6 weeks. It's only really now that I'm understanding how unusual synchronous bilateral BC (IDC) is - all the posts etc I read are (understandably) about having a primary in one breast. I'd love to hear from anyone else out there that is/was synchronous bilateral and if this changed any decisions you made about treatment to prevent reoccurance, genetic testing, etc?
Thanks!
Libby

primek

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

water_nymph

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

LMK74

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

Mrs_H

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.

water_nymph

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 
   

MartineB

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

water_nymph

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