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Lin · 01-18-2008, 08:21 AM

As some of you might remember, I first posted to this list on 12-30-2007
concerning the cancer diagnoses of my best friend Annette. She did
really well with the first surgery where her surgeon attempted to remove
the entire "suspicious" area. It turned out though he didn't get "clean
margins" and would have to do a second surgery. He agreed to her having
a breast MRI prior to the surgery and it showed more micro-calcifications
than the original mammogram. She had her 2nd surgery just 13 days after
the first. The surgeon had a pathologist in the operating room to analze
the tissue to help in determining if he would have to remove the entire
breast. He first did a sentinel biopsy of her lymph node which was cancer
free then he remove another milk duct which was also cancer free. He then decided to remove an area adjacent to the milk duct which was "fatty tissue" and couldn't be frozen so they had to send it out for testing. Now to the problem. When she called the surgeon for the pathology report she was told everything looked good but the surgeon did want to talk with her at her next appt in a week. In the mean time we went to her oncologist who kept talking about more surgery or complete removal of the breast and when we questioned this he said it was because she didn't get "clean margins". We then went to the surgeon who said the "fatty tissue" he sent out for testing did come back with cancer but he was sure it was from the clean side and that he "felt" she did have clean margins. The whole problem is that the surgeon didn't mark the tissue sample as to which side would have been the "clean" side and now they don't know if the cancer was on the side next to the duct or the other side making it "clean". My friend does not want to have any more surgery or chemo. She would prefer to have mammosite radiation but now fears that she won't be eligible because there's a question about the clean margins. Have any of you gone through something similiar or could provide some quidance as to what to do next ??
God bless you all and praying for a cure.

Lin (Pensacola, FL)

hutchibk · 01-18-2008, 12:27 PM

I can honestly say that I never wanted more chemo or surgery! So I know how Annette feels. That said, and given there is no way to reverse what has already been (apparently) inefficiently done, (I would file a complaint with the FL medical assoc), in my opinion in the best interest of fighting for her life and the best possible outcome, I would:

1. if she has good trust in her oncologist, have him and the surgeon talk to each other, (if they haven't already). Have the Onc question him about the results and methods (and mistake)...
2. meet with a radiation oncologist recommended by the the most trustworthy of the doctors in her world. Have him also talk to the surgeon and pose questions.
3. open her brain to the possibility that more surgery might be the most prudent thing to do to be as certain as is possible that all cancer is gone.
4. I could be wrong, but I don't believe that chemo really treats what might be found in fatty tissue. Chemo works through the lymph and blood systems... I tend to believe that that would be in the realm of radiation for treatment. But remember, I could be wrong. That is a question for the experts.

But by all means, the doctors need to be talking among each other to sort this out for the best possible outcome, and you (as her advocate) and she need to stay in the loop on every level of this and make sure you are as knowledgeable as possible as she moves forward.

There are MANY others here on our site who are much smarter than me and who will be able to give you a lot of good info and a ton of support. Remember to always be a COMPELLING patient, that is the most fundamental advice I can offer to anyone starting this journey.

Bill · 01-18-2008, 08:05 PM

Hi Lin. Hucklebuck has given you good advice. You and your friend have to seek as many opinions from different docs. as you can. She is really fortunate to have you as a friend. You must remember to take care of yourself. If you don't eat well or rest well, you won't be at your best to help her. My wife and I were faced with a similar situation in 2004, so I can relate to your predicament. Recounting from memory, some of the dates and circumstances may be a little off. 2004, routine mammogram found microcalcifications. Steriotactic removal of micros. Stage 0 at this point, "caught it early". Oncs. recommended rads. to the site. After several treatments, the rad. onc. said she was concerned about the margins and recommended a mastectomy instead. The surgical onc. said the margins were clean, and went in and did a second breast biopsy and the margins came back clean again. We were relieved and continued with the rad. treatment, no mast. 18 months later, my wife had a gallbladder attack, and when they went in to remove it, they discovered breast cancer mets in her liver. She never showed any sign of cancer in her breast, we still don't know what happenned. A stray cell slipping into the bloodstream? The biopsy moving a cell into the bloodstream? who knows. We wondered if we should have taken the rad. oncs. advice and had the mastectomy, but who knows? I know you're faced with difficult decisions, and I don't want to frighten you, just wanted to tell our story. With cat scans and other tests, our onc. explained it this way, "Picture an inch of tissue being sliced into a hundred different pictures, the cells we're trying to look at are so small, some may be in between, in the margins. As technology progresses, the testing will be more accurate, but right now, that's the best we have." It's unlikely you and Annette are in the same situation as we were, just wanted to stress the importance of carefully weighing all of the pros and cons and getting many different opinions. Praying for strength and guidance for you both, Bill

Jackie07 · 01-18-2008, 08:39 PM

A dear friend of mine had three breast surgeries within 2-3 months last summer because the surgeon was not satisfied with the margins. She eventually had a mastectomy (after the initial lumpectomy.) When I had my lumpectomy in 2003, the surgeon was sure that she had gotten a 'clean margin', but my cancer was very fast growing and it came back right next to the scar, and for 4 years, the new growth was thought to be just scar tissue. When I questioned her after the 2nd diagnosis, she insisted that 'the result of mastectomy is the same as lumpectomy plus radiation'. Statistically, yes. But when it happens to the individual, those statistics may not mean anything. Yet, as an individual with cancer, we all are trying to fight the statistic, trying to beat the odds.