Difficult decisions
Jude_D
Member Posts: 2 ✭
Hi,
I was diagnosed with lobular breast cancer on 24th January. Stage 1 - clear LN. Er and Pr positive, HER2 negative. I've had 2 lumpectomies now and still no clear margins. The second op found another 10mm focus of tumour which was not seen on U/S, Mammo or MRI.
So my choice now is whether to try a 3rd lumpectomy for clear margins or go for a mastectomy. I've been told if we get clear margins the recurrence rate for lumpectomy and mastectomy are the same. But my niggling fear is the fact that this second focus of tumour wasn't seen on imaging. And lobular cancer has a higher risk of being multifocal so what if theres more in there. So I'm leaning towards a mastectomy. Does anyone else have experience of this scenario? The surgeon has said both options are totally reasonable.
I was diagnosed with lobular breast cancer on 24th January. Stage 1 - clear LN. Er and Pr positive, HER2 negative. I've had 2 lumpectomies now and still no clear margins. The second op found another 10mm focus of tumour which was not seen on U/S, Mammo or MRI.
So my choice now is whether to try a 3rd lumpectomy for clear margins or go for a mastectomy. I've been told if we get clear margins the recurrence rate for lumpectomy and mastectomy are the same. But my niggling fear is the fact that this second focus of tumour wasn't seen on imaging. And lobular cancer has a higher risk of being multifocal so what if theres more in there. So I'm leaning towards a mastectomy. Does anyone else have experience of this scenario? The surgeon has said both options are totally reasonable.
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Hi there
I was in a slightly different situation to you - my tumour was also lobular , was not picked up on mammogram -,I found a lump
Due to the size - 5.5cm - my surgeon recommended a mastectomy straight up which I had.
I ended up getting the other one removed and double DIEP reconstruction after having radiotherapy ( again recommended due to size of tumour)
These are extremely difficult and personal decisions to make that is for sure.
I was large breasted (E cup) but took the opportunity to go down to a C cup and 28 months on from the reconstructive surgery zi am very content with my decision.
At my first consult my surgeon talked about the possibility of a lumpectomy but the MRI clarified the extent of the tumour and my surgeon said after the mastectomy we made the right call.
Best of luck with whatever you decide .
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Welcome to the blog, my friend!! I'm glad you've found us - you can ask anything of us & we'll do our best to help you thru it, as we've been thru it too xx. Feel free to jump onto this thread to see 'other areas' we muck around with as well - even funny stuff (god knows we all need a laugh now & then!). There are also 'tick sheets' that you can fill in before seeing your team next time - almost 'self assessing' .... I hope these are of use to you xx
https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-our-new-members#latest
Lobular is a particularly nasty little beastie, @JudeDriver - VERY difficult to find with 'normal' scans .... I was very lucky - like @Julez1958 - the mammogram didn't pick up my Invasive Lobular - but my GP actually found it (by accident) 4 months after a clear mammogram! grrr Mine was also directly under the nipple, so my surgeon was happy to 'lift the nipple', rip out the intruder, reassign some fat into the hole & then reattach the nipple .... followed by radiation & then AIs.
IF mine had been 'trickier', I was more than happy to go with a mastectomy - but 5 years later, my surgeon is still happy with the decisions made back then.
As @Julez1958 said - it is a particularly personal decision & you've already had 2 procedures & not had clear margins & the other tumour didn't show up on scans .... all of which is a worry.
Whatever decision you make - YOU have to be happy with it. Right now, that little puppy isn't doing you any favours ..... For your own peace of mind, you are already leaning towards the mastectomy .... and I am glad that your surgeon is accepting of that option as well.
We have 2 private groups you may like to join (click on the Groups list in the blue banner & you can click 'join' on them - Choosing Breast Reconstruction or Flat Chat - No breast Reconstruction - where those choosing NOT to have reconstruction can plead their case.
All the best with your decision making xx take care
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I think I was really lucky that the original tumour was picked up on mammo - because no-one has ever been able to feel a mass on palpation even knowing where the little bugger is. So I should be thankful for that at least. Its great to hear other peoples experiences and I really appreciate both your answers @jules1958 and @arpie. I'll do more research this weekend and arm myself with lots of questions for Tuesday.2
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All the best for Tuesday, @JudeDriver - we also have an Invasive Lobular Cancer group .... if you find anything interesting in your research, feel free to join the group & whack it up there!
Take care
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