Here we go again . . . margins weren't clear

Pennythoughts

Here we go again . . . margins weren't clear

Pennythoughts

I was diagnosed with IDC on Sept. 14/10.  My surgeon felt that breast conserving surgery and SLNB was a good option for me because my tumor was measuring 8 or 9 mm.  Had lumpectomy and SLNB on Oct. 4.  He did a great job - breast looks virtually the same, except for the SLNB incision up by my armpit and almost undetectable incision along my aereola.

Got a call from him yesterday that some pathology had just come back to him and that my margins were not clear, but that the node was negative.  So I need another surgery.

I feel like I'm back at square one - - lumpectomy or mastectomy?  I agonized over this the first  time and decided finallly to take this in baby steps so I would have more options going forward.  But once again, I am so confused.  My gut wants to have the least invasive procedure, but I am scared of what I've read about radiation.  If I get the Mx, then I don't need the rads.  So far, no chemo is in the cards b/c of the negative node and the smaller tumor.  I don't even know the stage - no one has told me.  But he said I have a Grade 2 cancer.  We also don't know yet about the ER/PR/HER2 because those tests aren't back yet.

I have very dense breast tissue so I have a fear of recurrence.  I am 48 and pre-menopausal.  There just seems to be too many unknown factors - - how does one make a decision like this?  I see so many women on these forums opting for BMx or UMx, but that seems so final and I don't know if I can do that all at once.  What if it's not necessary?  What if I go for breast-conserving again, then rads, and then need a mastectomy anyways?  Then my radiated tissue will harder to reconstruct, won't it?

I have worked myself into a state and cannot stop the constant brain chatter, the pros, the cons, the what ifs. I see my surgeon next Tues. for follow-up on the first surgery and have to have a decision for him on the 2nd surgery.  Have also already been scheduled for a bone scan on Nov. 22, but that was before these pathology reports came back on the first surgery.

I haven't laid eyes on an oncologist yet - - I have a long time to wait before that happens.  I'm in Canada and it takes weeks, sometimes 2 months to actually get your first appt. into the Cancer Centre.  So it's just me and my surgeon right now and I feel woefully ill eqiupped to make this decision.  I know nobody can tell me what to do, but I had to vent.  Crying my eyes out since yesterday and feeling absolutely paralyzed.  Just an encouraging word from anyone would be great.

GoldenEyes

Hi PennyThoughts,

I just wanted you to know you came to the right place. .The women here are wonderful.. only you can make that decision. and you have to feel comfortable with it...The first time around my margins were not clear...8 yrs ago.. but I also had 4 positive nodes...My situation is very different from yours..Wait until you get al lthe facts from the Dr.  ER PR HER2....I am sure you will make the right decision that is right for you. Are you married? family? Now is the time for everyone to pull together and be there for you.. Sending you Hugs  {{{Penny}}}}  I am sure more women will be here to give their thoughts...

Donna

jacee

Penny thoughts...I too had a small tumor..7mm and they didn't get clear margins during the lumpectomy and SNB. How can you not get a clear margin on something that's 1/4" wide???? I know....it happens. Anyway, I had 2 sentinel nodes positive, so for me I chose Uni Mx. And yes it was the hardest decision I've had to make. But, a year and a half has gone by along with chemo, rads, port surgery, etc. and I chose to have a prophylactic mx on the other side last month and did bilateral DIEP recon. For me, I felt the other breast was just waiting to get cancer. No regrets.

I love my new breasts, more than my old....REALLY

BUT, I agree....we are called upon to make these decisions when we are very new at this game, uninformed, scared to death, and very vulnerable. I finally had to give it to God. There was no way I was going to know every thing there was to know. I was going to have to trust those He placed in my path to help me. And I came straight out and asked my breast surgeon and onc what they would do. You do what your heart tells you. And you ask for copies of every pathology report, every operative report, every lab result, andy scans can be put on a cd for you within 5 minutes of your appt usually. You have a right to ALL your information. Be informed and know you have a whole army of ladies here who know what you are going through.

Hugs,

Joni

Luah

Pennythoughts - It's such a letdown when you expect to be done with surgery and you're not. I had to go back a second time too, but it was for an ALND because of micromets in a node.  It is very stressful to be thrown back into decision-making mode, but you will be okay!  (Whenever I feel confused, I know it's because I haven't got all the facts yet.) 

What does your BS say about the reason for the unclear margins? There'd be a big difference between not quite getting the edge of the tumour, OR finding evidence of isolated cells or DCIS all around in breast tissue OR the tumour was too close to the surface or chest wall.  And the solution may differ too. Also, does your BS think he/she can get clear margins with a re-excision? Why or why not?  These might be key considerations.  Hope your discussion goes well, and you get the answers and peace of mind you need! 

Pennythoughts

My surgeon will only tell me that he is a fan of breast-conserving surgery.  All he told me was that this time they would have to take more tissue, and take the tissue surrounding the biopsy track (why they didn't do that the first time, I don't know????)  He seems confident that this will work, but he is willing to do whatever I want.  If I do this, then I still get the rads.  If I go Mx, (he says he would do a skin-sparing Mx - I'm not sure what that is), then likely won't need chemo or rads.

 Part of me wants to conserve my breast, even if it is a little deformed, and part of me wants to get rid of all/any possibilities of this cancer returning.

He (BS) keeps reminding me that survival rates are almost identical with lumpectomy/rads as Mx.  That doesn't make it any easier to make the decision.  What I want is for someone to tell me what to do. That's not gonna happen . . . is it?    I like there to be a "right" answer, and there just isn't one.  I find that really, really hard. Can you tell I'm a Type A?? lol

Beesie

Penny, my question is whether you've had an MRI. While it doesn't always work this way, in many cases an MRI can be more effective than a mammo at showing the full area of cancer.  After I had surgery with no clear margins and had to make the lumpectomy vs. mastectomy decision, it was my MRI that pushed me over to the mastectomy side because it showed that a large area of concern remained in my breast.  If the MRI had been clear, I would have gone with the re-excision, hoping for clear margins this time.  The MRI did show my other breast to be clear, so I opted for a single mastectomy.  And the MRI proved to be correct - when my breast tissue was examined after my mastectomy, a lot more DCIS was found. So clear margins would have be unachievable with a lumpectomy.

A couple of things to be aware of as you make this decision:  First, while in all likelihood you won't need radiation after a mastectomy, you actually can't know this for certain until after the surgery.  If there happen to be cancer cells right near the chest wall, then radiation might still be necessary.  Second, you said that "part of me wants to get rid of all/any possibilities of this cancer returning" and you need to understand that a mastectomy will not give you this guarantee.  Assuming reasonable margins, you will still have around a 1% - 2% local (i.e. in the breast area) recurrence risk after a mastectomy.  That's a small risk, but when you think about all the women who have breast cancer and who have mastectomies, 1% - 2% of all those women is still quite a few women.  So it can happen.  Also know that having a mastectomy will not change or reduce any risk that you may face of having a distant recurrence (i.e. mets).  Any treatments that you may require to reduce your risk of mets (possibly chemo if your hormone status is triple negative or HER2+, possibly Herceptin if you are HER2+, possibly Tamoxifen if you are ER+) will all be required whether you have a lumpectomy or a mastectomy.    

Just a bit more information to add into the mix....

ruthbru

I didn't have clear margins the first time around either. I had a 'redo' of the lumpectomy and it worked well for me. Don't let radiation be your determining factor; as Beesie pointed out; a masectomy is NOT a guarantee that you won't need it. (I, personally, did not find radiation to be bad at all.) Best of Luck. Ruth

Drim

Pennythoughts - I remember quite well the despair of finding out I did not have clear margins following the lumpectomy and I would need a 2nd surgery. I actually had quite a few 'close' margins (there are six sides) but I did have an MRI (excellent point Beesie) so my surgeon was reasonably confident that she could achieve clear margins with a re-exision. I went in for the 2nd surgery 2 weeks later and clear margins were achieved. I did of course lose more breast tissue and I was not that big to begin with and cosmetically I am very pleased with the results so you may not even be a little deformed. The recovery from the 2nd surgery was easier than the first probably because I did not need to have any more nodes removed.

These boards are a great place to come to help you make an informed decision and ultimately that's what you want - information that will give you the confidence to make the decisions you will need to make....and likely there will be some more down the road. Good luck with whatever decision you make!!

Pennythoughts

Having re-excision Nov. 17/10 (next Weds.) to remove more tissue and biopsy tracks.  Don't think I'll be left with much (small breasts to begin with).  Maybe I'll wish I had just opted for the mastectomy after all. 

There I go, borrowing trouble before I've even got there.  I guess I'll just have to wait and see how it all turns out.  Thank you ladies for all your encouraging posts and sharing your own experiences and wealth of knowledge.  It means so much to me to know that there are others out there on these forums who know EXACTLY what I'm going through.  Not having anyone in my life that I know face to face who has ever had BC, this forum is helping to keep me somewhat sane.  Blessings to you all!

MomGeo

Pennythoughts - I am new to this site and extremely curious as to how your re-excision went on November 17th.  I am similarly situation as I did not get clear margins from my lumpectomy either.  However, I did have the luxury of having an MRI and CT/PET scans ordered right away.  The MRI showed a small cancer site within my seroma cavity (first excision site) and my CT/PET was clear...that was such a blessing especially to know that my lymph nodes were clear.  I am in the throes of making the mastectomy versus additional lumpectomy decision as well.  Before I can make that decision, I need to know the results of my BRCA-1 and BRCA-2 gene test results.  I have three daughters (14, 11, and 5) to think about.  Those results will obviously help...if I am positive then it's an automatic bilateral mastectomy.  My serious deliberation begins if the results are negative.  I hope you are doing well!  I am extremely curious about your chemo and/or radiation as well. 

Big hugs!!!   

Pennythoughts

Hello Mom Geo - Had the re-excision on Nov. 17 - all was well with the surgery but I had a terrible reaction to the adhesive on the bandage they put on me.  So now I have scars all over my chest from the open sores/blisters that the reaction created.  It was actually worse and more painful than the surgery.  Go figure.

I waited three more agonizing weeks to get pathology results on the re-excision.  Finally heard on Monday Dec. 6 that all was clear, so now I'm off to the cancer centre, for the first time since this all began.  But I am fighting for an MRI and I told them I won't be doing anything else until I get the other breast looked at through MRI.  I have the lumpy, extremely dense breast tissue and am very concerned about it.  I'm in Canada, and in my city, they just don't do MRI for breast cancer as a matter of routine.  We don't even have PET scans here - - not sure I even know what they are.

I go to a chemo oncologist tomorrow morning (Dec. 23) at 8:00 and find out what goes from here on in.  I really don't know what to expect.  At the beginning of all this, I was told that if I chose lumpectomy, I should be good with that and radiation.  But now they're saying due to my age (just turned 49 on Monday) and tumour size, (9mm) I'm likely to get chemo as well.  My surgeon says the standard for years has been negative nodes and tumor less than 1 cm is no chemo.  But now they're changing the size of the tumor to 8mm for that marker.  I have not been tested for BRCA-1 or BRCA-2 and no one has even suggested it.  Again, it probably has to do with me being in Canada.  I have a 23 year old daughter, so I also am very concerned about that.  I guess I will have to ask about it tomorrow when I go in for my consult.

The only good news is that with the re-excision, my surgeon knowing how I was concerned about having a divot or hole in my breast, monkeyed around and filled it in somehow, which gave me a bit of a boob lift.  So the cancer breast actually looks a little better now than the other one.  And it is sitting quite a bit higher, which isn't noticeable with a bra on but naked, it's pretty obvious.  Now I'd like to get the other one done to match.  LOL

In any case, no further treatment until the New Year, and I have yet to find out what they have in mind for me.  I will keep you posted.

I know how hard these decisions are to make and so do all the other women on this site.  The stress of it all - - and your kids so young makes it even harder, I think.  Big hugs to you as well . . . let me know how it's going for you.