Still close margins after two surgeries

Aussie275

Hi, just hoping for some similar situations to help guide me please.

My story goes like this .....

Aug 2017 diagnosed with IDC in left breast. I wanted a mastectomy but was advised by my medical team to do Chemotherapy first for a better surgical outcome which I did. After chemo imagery looked great so I went in for a lumpectomy but unfortunately did not get clear margins only close margins so back to surgery I went. Now again after second surgery still only close margins not clear or positive but close in two areas. My pathology after surgery shows no IDC so no active cancer cells only DCIS left in tumour bed.

My medical team are now recommending a mastectomy??? This seems so extreme and quite upsetting after the chemo results 😢 I can either have radiation for a total of six weeks with the boost at the end but because I don’t have the 2mm clear margin they are putting mastectomy as my first option.

I am hoping there may be some of you who had this decision to make. How did you decide & do you have any advice for me please?

Thank you in advance

vampeyes

Hi Aussie,

{HUGS} I am so very sorry that you are going through this. I had two surgeries as well, but thankfully for me my margins were clear after the second. I wanted mastectomy after the first surgery, but was convinced to wait till the BRAC test came back.... don't even have an appointment for that yet - got a letter they will be calling in July to make that appointment. lmfao Why they wasted a stamp instead of just calling is beyond me. Anyway, even after being done with treatments I was still contemplating a double mastectomy. Honestly I didn't want to ever have to go through this again, after a lot of weighing of pros and cons I opted to continue to wait for the BRAC test. If I was in your situation I would likely do the mastectomy, but that's me. Good luck with your hard decision, my thoughts are with you. BC sucks big time.

Cheryl

Aussie275

Hi Vampeyes & thank you for reading & commenting. Good luck with your BRAC testing hope it happens soon. Thanks I guess I am just so disappointed 😞

HUgs to you too

Bonnie7

Hi there,

Sorry that u are going through this, It's challenging enough as it is without the uncertainty of what you should do!

I will try and keep this brief! I had a lumpectomy in 2002 with DCIS, pea size lump in right breast. Ii had 6 weeks of radiotherapy and tamox for several years. Reoccurence, same breast, in 2005 - IDC radical mastectomy.

Fast forward to 2013 I had a latissimus dorsi reconstruction, then recurrence above implant in 2015 (implant removed after chemotherapt) pathology required a wider margin so early 2016 I had another surgery which showed my pathology was orientated to my original diagnosis in 2002!!!

My point is that if I could do it all again, I would not have had the surgery when I did (in 2002) I would have had regular monitoring and check ups for any changes, but would have left things well alone! Nowadays some surgeons are happy tio do this! I have since learned my particular surgeon is a little too ambitious for and in surgery! Refuse to see him now!

If in doubt, get a second and third opinion if need be, It's your body!

Good luck, Hope all goes well for you truly!

Aussie275

Thank you Bonnie7 for sharing your experience with me.

I have decided with the help of my husband, family and realising that either way it could all go haywire or not, I may as well monitor after rads and IF anything happens treat then with the mastectomy & reconstruction option. It could be a year, it could be years or it may never come back.

Thanks & Imstill keen to hear others stories & experiences.

vampeyes

Bonnie7, did I ready you got BC while taking Tamoxifen??

Aussie, I think you have made a good decision. It took me a long time to realize that a mastectomy (I would have done both) was a huge surgery for something that was not a 100% guarantee. Take care.

Lula73

Aussie-have you had an MRI? The reason I ask is what could be happening is that the wider they go on trying to get clear margins they may be actually cutting into another area of IDC/DCIS that didn’t show up on mammo/ultrasoundwhich would indicate its more widespread than originally thought. Mammo and ultrasound don't always show everything. MRI is much more sensitive and may give you additional pieces of this puzzle to help make the best informed decision for yourself.

Aussie275

Hi

Cheryl thank you - I am still worried but as one of my medical team said ‘it could go pear shaped either way’ no guarantees as we all know.

Lula I had an MRI after neoadjuvant chemo just before surgery which showed no IDC or no suspicious mass just the cancer bed that now has been removed during surgery. If I have any suspicious findings on my next scan or any in the future I will go straight to mastectomy