How many re-excisions did you have?

hzzr

Hello,

I have DCIS in the right breast and opted for lumpectomy right off the bat - it's what I did 8 years ago for IDC in the left side, along with rads (plus chemo etc) and all has been well thus far.

First excision (May) had positive margins.  So did second (July).  While my surgeon had a vacation, I met with my medical and radiation oncologists and they are both leaning towards mastectomy.  One rather heavily in fact ('if you were my sister I'd be talking you into a mastectomy' even though I didn't even ask that kind of question).

I'd rather not have one though.  My surgeon's picked that up, says although mastectomy is 'indicated' here, he could try again for margins.  I was all set to surrender to the mastectomy, but at my last appt he brought this up again as an option.  I'm a D cup so there's enough there to 'work with' - you can't tell at this point though I know there's still some fluid build up.

My question - has anyone had 3 attempts at re-excision?  What was the end result?  

ballet12

Hi Hezzer, I had a total of three surgeries, involving two re-excisions.  I am a barely C cup, so I didn't have that much to work with.  I had also had three prior excisional biopsies on that breast, so it was already smaller than the other.  I was pretty determined not to have a mastectomy, if at all possible.  I didn't want to have implants and I wasn't a good candidate for DIEP flap, not to mention the hugely extended recovery time involved in that (given that I have to work, etc.)  So, I was willing to take a risk of having a cosmetic defect, so to speak. I only had one margin that was positive, going into the final surgery, which was fortunate.  Well, the result immediately after the surgery was a bit unsettling, but somehow two things helped the situation over time.  The breast tissue changed with radiation, becoming softer and easing the situation, and I may also have a surgical seroma/scar tissue, which is plumping things up.  They also say that the breast sometimes settles, months after the surgery. The defect is now only really visible when I raise up my arm, and of course, the breast is smaller.  I've gone back to swimming (wearing a racing bathing suit with no support), and for everyday, I wear bras with molded cups.  I could have gotten a partial prosthesis through insurance, but don't need it. Prior to my last two surgeries, I called my mother's neighbor, who happens to be a very well-known breast surgeon (to the stars, etc.) in NYC.  On the one hand, she asked why I wasn't going for the mastectomy, and at the same time, she described one of her patients, and said that the patient had four attempts, and the fourth was "the dream."  I imagine that each situation is so unique.  It also depends on what part of the breast is being operated on.  Mine was really the lower half (and yeh, a large part of that is "gone"), and it doesn't show when wearing lower cut clothing.  Have you had an MRI to help determine if there is lots of DCIS still there or only a small amount remaining? I'm sorry you are getting pressure from the MO and RO.  I used a second surgeon for the second and third surgeries because I transferred care to an NCI-designated breast cancer center.  She never pressured me one way or the other. I am very happy with my choice. I'm sure you have read the many threads on the mx vs. lx debate.  I came away from those debates with the feeling that there are potentially many more complications with the mx than lx, not the least of which is the small risk of lymphedema.  I was prepared to do the mx with no recon if it came to that, but luckily it did not.

hzzr

Thank you ballet12, that *really* helped.  I've made an appointment with the general surgeon today to ask my last few questions about this.  I want to know if the assessment of my risk has increased since the first surgery - I don't think it should have, not without an MRI or at least another mammo to see what's left in there.  But I'm confused why lx + rad was the treatment of choice at the beginning, but now mx is the preferred choice.

I'm still very interested to hear of others' experiences, if you have a moment to chime in :-)

fd1

Hi Hezzer!  I initially had a lumpectomy with positive margins.  I decided to do chemo before the re-excision as I felt it had already been too long at that point.  After completing chemo, I had my re-excision which had one spot of cancer less than 0.5mm big, but right on the margin.  The surgeon proposed another re-excision and given the results of the first, I thought I should go for it.  Unfortunately, there were a few more spots on the margin and that's when we opted for the mastectomy with reconstruction. 

Although all of this delayed putting this behind me, I must say that recovering from the lumpectomies was way easier than the mastectomy with reconstruction.  I wouldn't change what I did for a second.  The ironic thing was that the pathology from the mastectomy showed no residual disease. 

ballet12

Hi Hezzer, glad it helped.  I actually switched from a general surgeon to a breast surgeon for the last two lumpectomies. I was glad that I did.  The general surgeon had not "marked" the margins, so the second surgeon didn't really know exactly where to operate.  She went where she "thought" it looked like there had been surgery done.  As a result, there was still one dirty margin.  She actually apologized for this.  Probably, if I'd had her from the beginning, I wouldn't have needed so many surgeries, but I'd gone to this surgeon for three previous excisional biopsies over a 17 year period, and when I went for the first lumpectomy (for the DCIS), we didn't yet know I had DCIS.  The stereotactic had shown ADH.  So, I don't know if you can do a consult with a breast surgeon at this point, but I'd recommend it.

hzzr

Thank you so much ballet12, fd1 (and ealga) - your experiences were so helpful in my decision making.

I had another appointment with the surgeon on Thursday, and asked - "am I in any different position than I was back in May (first surgery)?  i.e. if margins are clean this time, is it not the same as if they were clean at the start?"  His answer to this, plus your stories and my own research, confirmed my decision to go for a 3rd surgery.  ballet12, he wouldn't go for the breast MRI - says there's too many false positives with them which you can't do anything about other than surgery as they don't show up on mammo or ultrasound.  I have read that too. But I suggested another mammo for insurance as I'd read others had done that, so that's what we agreed on.  Just to see if there's any more disease outside of the surgical site.  If not, we'll do the 3rd excision and be 'going for margins'.

I am very happy with this decision and thank you so much for helping me!  

cheers, Heather

ballet12

Sounds good.  Glad he agreed on a follow-up mammo and you are happy with the current plan (that's important).

hzzr

Hello...had the 3rd surgery before the weekend...now just in recovery. Waiting for the patho report yet again! Three times I've done this over the last 6 months. Should be some sort of expert by now LOL

I can see already that at the very least I am probably going to have to get to know the plastic surgeon...even the general surgeon was prepping me for that possibility while I was in recovery. Kinda not great timing on his part truthfully...anyone else remember more than a 3rd of what your doctor tells you, when coming out of general anesthesia? I can't be alone in this...worst thing is what he says all makes sense at the time, but I remember barely any of it once I'm on my way out the door of the hospital! LOL!

ballet12

Hi Hezzer,

I hope you are healing well, and that there are no more surprises in the path report! Give the healing some time before you decide about the plastic surgery. The situation can change with healing and even with radiation. After my third lumpectomy surgery this go around, I was a bit in shock, even though I expected cosmetic changes. It has changed substantially for the better. Areas that were jagged or "empty" filled out. There may be some not so good reasons it looks better (swelling/scar tissue), but it's much better. No one can tell anything, with a good molded bra and clothing on. Just a thought. I don't know your situation, and I'm sorry that the surgeon felt the need to comment. It should be for you, alone, to judge. It is good that the plastic surgery is available for you, so that you can feel whole again.

hzzr

Thanks ballet12 for your comments and suggestions. I know, waiting is a good idea. Things do change, and what I can see doesn't spook me, thankfully. Just aware that over the last 2 months, the 2nd surgery's impact was becoming more apparent, so I'm figuring this time will be more obvious. It's ok though - keeping my breast is about avoiding the complications of mastectomy than about looks. If it comes to it, I might try to convince one of these doctors to just reduce the other side to match! I've always been too big for my liking.

My surgeon was being a good guy - I think he just felt a bit bad and worried about the outcome so he wanted to tell me sooner rather than later. He of course got a good look prior to the swelling setting in. The mammo I had pre-surgery showed a small amount of calcification outside the surgical site, which I decided to have removed without bothering with a biopsy to see if it was more DCIS. So there was a bit more to take out than just margins. I reread what I wrote above and what I meant about bad timing is just that I never remember what my surgeon tells me when I'm in recovery, even though I am fully engaged in the conversation while it happens. In fact, at one point I asked him if he could come find me later than normal, to give me a chance to wake up more, which he's respected - but the extra time still hasn't helped much! Ugh - normally I'm pretty quick, but they totally meant me when they say you have to get a ride home after day surgery - I wouldn't find my own house after a general!! LOL Gah - if I need more surgery I'll just ask him to write me a note <grin>

I saw in another post that you were followed by Dr. Susan Love - her book was a lifesaver during my first cancer 8 years ago. Still is - I rushed out to get the 5th edition this time around!

ballet12

I was a patient of Dr. Love's before she became famous and moved out to LA. She was actually a very compassionate doctor. She's now a cancer survivor, herself, so she's saying now that she's got much more empathy (leukemia and stem cell or bone marrow transplant).

hzzr

I think you were really lucky to have her. I thought her whole book was an exercise in empathy - she didn't need to get more, certainly not by experiencing cancer herself! I hope she is doing ok. I remember kicking myself for not diving into the chapter on surgery before my first lumpectomy - everything was happening so fast that I didn't have a chance, but it would have helped so much as she walks you right through the whole process. Gah - I was such a newbie back then (after 5 surgeries in 8 years, plus training as a vet tech in between, there's not much to the surgical process I haven't figured out by now). Having said that, I AM going to read her chapter on mastectomy prior to my follow up appointment - not as doom and gloom, but for prep. I'm one of those people who likes to have as much info as possible - I think I would have done very well with her as my surgeon. I just don't like surprises! :-)

hzzr

Since I've posted all the rest of my 'story' so far, thought I'd share the news - 3rd excision not successful.  2 margins positive for DCIS and a new 4mm focal of invasive carcinoma found.  At least one mastectomy is in my future.  Sucks!!!

Beesie

Yes, that sucks. I'm sorry that the 3rd excision wasn't the charm. And Crap! too to the 4mm of invasive cancer. Now HER2 status will come into play... that's a very important piece of information that will determine your treatment plan going forward.

Good luck with the MX. It's not what I would chosen for myself either, but sometimes it is medically necessary and unfortunately that's where you are now.

hzzr

Hi Bessie - thanks for your response, it helps!! There were two focals of microinvasion found in the first surgery (back in May) and they were er+ but her2-. Would they test this new one as well? Also, I had IDC back in 2005 and had Herceptin at that point. Can you have it twice? Just curious, as I'm thinking/guessing that her2 isn't going to play a role this time. Mind you, I will be interested in the patho results after the mastectomy - there seems to be a never ending source of DCIS in there and goodness knows what else!

I now need to get up to speed on BX vs MX, recon options vs 'flat and fabulous'. Leaning towards BX with delayed recon with the option to skip it altogether. Opinions are welcome! Also any ideas on walking down that hallway to the OR for the MX. Lumpectomies were a piece of cake for me, more or less. The idea of the MX makes my blood run cold and I'm trying to find my courage.