Hi Jolamine and Laura

Thanks for your support.  I saw the consultant today, and he seemed quite positive that the third unknown area hadn't shown up on the repeat MRI, and said he was happy to follow up in 6 months' time to make sure it was all ok.  So I am booked in for a double lumpectomy with sentinal node thingy and radiotherapy.  4-6 weeks wait.  Happy that I am on a route now, some progress!

Hi Jolamine

Yes I'm happy with that decision, tbh if the consultant had recommended a double mastectomy I'd have been happy with that also.  The only thing which concerns me is the 15-20% chance of not getting clear margins and having to go back into surgery!  But fingers crossed won't need that.

Hi Sunlover,

I was diagnosed with a small invasive ductal cancer last year.  After the initial biopsy they told me it was tiny at 1mm and that it may have been sucked out in the biopsy process.  That wasn't the case.  
I was booked in for a lumpectomy then 2 days before the operation I get a call to say they were cancelling as they'd reviewed the mammograms and found another area of concern.  It was pretty awful.  Turns out they found another area of DCIS.

My plan then changed and it was suggested that I have a mastectomy (that I had initially wanted but was refused).

I had my mastectomy and they discovered the invasive was larger (10mm) and they also found LCIS as an incidental finding (this puts me at slightly higher risk for lobular cancer).

All things considered I was pretty relieved I'd had the more drastic surgery as my boob had been a ticking time bomb!  I couldn't help thinking what if they hadn't found the second area prior to my surgery?

If your surgeon gets good margins there are good outcomes for both procedures.  The benefit, I feel is that after lumpectomy you will also have radiation to blitz everything.  You don't have radiation after mastectomy.  Sometimes I wish I'd had some radiation as a safety net.  I have to rely on endocrine therapy (tamoxifen for now) to sort out anything that could be left (unlikely).

Ovetall I don't regret having the mastectomy at all and it does give some comfort that everything is gone.  Unfortunately, and very occasionally things can be missed and that's a worry.  Don't hesitate to get second opinions and further scans if you have any doubts.   Everyone's experience is different and it's wise also to listen to your team.

Wishing you well with your journey.  You will get to the other side sooner than you think.

Mary x

Hi Mary

Thanks for sharing your experience.  It is a worry indeed if they find more than they were expecting.  Did you have an MRI scan at any point?  I have had 2 now as neither of the two lumps I had showed up on mammogram.  Hoping that it was enough to ensure there's nothing else there - for now, anyway!

Fiona

Hi Fiona,

No I didn't have an MRI at all even after they found the second area.  It was one of my moans, I wanted one but they wouldn't do it.  
 

To look at this from another angle, I do know someone who had an invasive lobular that showed to be very large on MRI.  She was told mastectomy was essential.  Well, roll forward to her post op histology results and it turns out the MRI was wrong and the lobular cancer was much smaller than anticipated and lumpectomy would have been fine.  Just awful but too late, her boob was gone!

I think there is some thinking that with MRI you can get false positives and mammography is considered the best screening method to find BC.  There are some things that show up better on MRI (lobular for example) where it is used more often, but given what happened one does wonder!

It's a very personal choice and the Drs are the experts.  I'm glad I had the mastectomy because of the 2 areas, but that's just me.  I'm flat and happy with it.   A lot depends on size of boob etc and I'm small so 2 lumpectomies wouldn't have worked for me and clear margins are essential.

Do get second opinions.  I did and had my mammograms re-read at another hospital. Another week or two won't make any difference to get another referral and you need to be sure before surgery.  Best of luck.

Mary x

Interesting, I wonder why they didn't do an MRI for you?  I have one ductal and one lobular, and neither showed up on mammogram! I think whatever you choose to do there are pros and cons, and I'm just hoping for the best outcome now that the drs and I have made the decision.  I will let the forum know when I have had my surgery as I think it can be useful for other people to see what pros and cons there are from people's experiences.

Glad you're happy with everything.  Things always seem better when you have a plan.  If you don't mind my asking how did your lobular present if mammograms were clear?  
 

I asked for an MRI after they found the LCIS after surgery.  It's not cancer but puts me at slightly higher risk of a lobular cancer.  It was refused as they said I was non symptomatic in the remaining boob.  My ductal showed up clearly as calcifacions in the screening mammogram.  No lump.

Still think that if anyone has had breast cancer, it would be advisable to have an MRI, just my non-medical opinion!  I went to my GP with a lump which I wasn't sure if it was normal breast tissue or a lump, could only really feel it in the shower, with shower gel on.  Got referred and even the breast doctor wasn't sure - it was revealed on ultrasound.  Because I have dense breast tissue and it wasn't seen on ultrasound (and it was lobular!) they decided to the MRI scan.  Lucky they did.

Jolamine asked about Letrozole - I have been on this for 2 weeks now with no symptoms at all.  Of course, I'm now questionning if it's working or not!  I had anastrazole 8 years ago when it was discovered I had LCIS (following biopsy of something benign) however after 2 or 3 months of repeated cystitis I spoke to the GP who said I could stop taking it.  Hm, wonder if that is why I went on to get cancer?  Anyway I'm hoping the Letrozole is doing its job and that I'll continue to not have any side effects.

Are you taking anything like that?

Well, that's very interesting Fiona to read that you had LCIS as an incidental finding during a biopsy a few years ago.  That is how it's usually found.  The pathologist found it in my mastectomy but it hadn't shown up on the 2 biopsies I had.
It wasn't even mentioned to me and I only found out it was present when I asked for a copy of my post op histology report.  After pushing and asking questions they completely 'poo poo'd it so to speak!  Said it's not cancer and they won't be doing anything about it.  I've since done my own research and it can put you at higher risk of a lobular cancer, which sadly it sounds as if that's your situation.  I'm so sorry.
 

I asked for an MRI scan saying (not unreasonably), I was worried there may be undiscovered Lobular cancer in my remaining breast.  It was flatly refused.  They said I'm not symptomatic, left breast is healthy on mammogram and ultrasound and that was that.  I hope they're right!!  It's interesting that you were given Anastrozole for LCIS.

I'm on Tamoxifen which may seem odd as I'm 56 but last year I had a random period bleed which was checked out with hysteroscopy, all fine.  They said I'm not fully menopausal so had to start with the Tamoxifen.  I'll switch to Letrozole in another year and will take it for 3 (total of 5 years for both) Tbh the Tamoxifen has been fine so far.

I'll be glad to get on the Letrozole (bit worried about side affects) as it works differently to Tamoxifen.

Thanks for replying.  The very best of luck with your surgery and recovery.   I know the Drs and nurses are great and we must listen to their advice but I'm a firm believer in advocating for our own health and asking questions.  It's not always welcome!
 

Mary x