"Hidden margins"...This explains a lot

[Tom]

Steph,

I apologize. it was my understanding that you DID insist on a mastectomy. From a closer examination of your post however, I believe the only thing you had to gain by getting the mastectomy originally, was a reduced chance of LOCAL recurrence, as you indicated that you already had axillary involvement. My Mom's tumor was right up against the chest wall, and I knew then it was going to be trouble. My mistake with Mom was not being forceful in seeing to it that the surgeon did a sentinel node biopsy. That would most likely have shown the micrometastes in her axilla, that went on to develop into a 12/20 node involvement over the following months, requiring her to go through a level II axillary dissection, rather than a radiotherapy approach to the axillary micromets. The surgeon took one enlarged node at the time of the original surgery, and found it to be free of malignant cells, giving all involved a false sense of well being regarding axillary spread. When she subsequently discovered that the cell type was not estrogen sensitive, as she virtually assured me it would be earlier, the poop hit the fan. The lumpectomy was suggested based on the suppostion that the tumor was ER+ and would be easily managed even without rads, but Tamoxifen alone. Her plan was to deal with any local recurrence through additional surgery later. So much for pre-surgical assumptions without biopsy.

Debbie,

My understanding of this disease, is that lymphatic spread is the most likely first route of the cancer, followed by vascular invasion. Surgical biopsy either prior to or during surgery, can be a crap shoot with respect to identifying metastatic prognosis. If you don't happen to find an invaded lymph duct or blood vessel in the slice being studied, you can't conclude that there is neither type of spread happening at the tumor bed site. Of course, as you mentioned, the lymph node studies, whether via sentinel node biopsy or extensive dissection, are the primary indicator used to determine risk of metastasis. I feel that the examination of the surgical margins is but one of a series of what amount to "clues" to metastatic risk, rather than a very accurate marker of such risk, and that the surgical margin taken predicts only the odds of local recurrence, if even that. It has been shown of course, that even women with extensive identified distant metastases prior to any surgery, benefit from attempts to remove as much of the primary tumor as possible, as this reduces the tumor overall tumor load, and improves the effectiveness of subsequent chemotherapy of any kind. If anyone has seen, heard, or read anything different than what I have described, by all means, please correct me.

Tom

[mts]

I was wondering if the recurrances your sister had were actually tumors that were already there from the beginning... Does she have dense breast tissue? Did she have a breast MR aside from the usual mammo at diagnosis? I had my MRI after my lumpectomy and two more tumors were found adjacent to the original tumor... and I had clear margins after the first lumpectomy. I think all the previous conversation regarding growth factors and lymphatic spread etc are important, but accurate physical imaging is very important too so we can decide what course of treatment to take.

Maria

[Shell]

Tom-

don't beat yourself up over the treatment your mom got - I had neo-adjuvant chemo, then lump, then SNB, (all clear, but a few micromets), then chemo again, then radiation and more chemo - and I still had my first reoccurrence to the axilla lymph nodes...
Shell

[dlaxague]

Hmm, 'can't figure out how to select out your words, Tom, and reply to your points one by one. When I choose "reply with quote", I can't see the quote. Anyway....

I don't know that lymphatic invasion precedes vascular. Do you have evidence to support that? How then to explain distant mets when lymph nodes are not involved? Again, I think that lymph node involvement is just a convenient and obvious marker of metastatic abilities of that particular cancer, an ability that not all cancer seems to have. But absence of lymph node involvement yet later distant mets doesn't mean that axillary involvement was necessarily missed, does it? The axilla could indeed be clear (as opposed to involvement being missed), and the surgical margins be clear, yet the cancer could have moved into the bloodstream before surgery and some of those cells could have found safe haven in the site of eventual mets. How they do that, how to know which cancer CAN do that, and how they evade tx there is the mystery. One of the mysteries.

As for removing the tumor and/or all the cancer cells being important to prognosis - yes, it's important to remove the primary, but the picture gets muddier when trying to prove the importance of removing cancer in lymph nodes. Logic tells me that should be important, but there's not much research to support it. I've know women who have declined axillary dissection even when there was clinically-evident lymph node involvement there, if the nodes shrank during neoadjuvant chemo. Their oncologists could not provide evidence that removing those involved nodes would change the outcome.

I think (hope) that what we're discussing about margins and lymph node status will become moot, as far as using the information prognostically or predictively. I hope that soon we'll look mostly at cell characteristics and from that will know the degree of threat of distant metatastatic potential of each tumor and be able to treat it accordingly, and with the best treatment for that particular tumor. But we're not there yet.

The bit about removing the primary even with concurrent extensive distant mets is so intriguing. There's got to be more to it than simply tumor load, because we know that in women with extensive distant mets (who had the primary removed at primary diagnosis), there is rarely an advantage to doing surgery to decrease the tumor load (unless it's one isolated and accessible site) and that the cancer responds (or not) to the treatment pretty much regardless of tumor load (ie, many large lung mets may shrink to nothing, just as a few small single ones would do).

So many questions yet to answer. Interesting discussion - thank you!
Debbie L.

[VaMoonRise]

Hi, Everyone, it has been a while since I last posted anything. I have been tied up with the research focus group survey lately. I am still on the clinical trial of Herceptin, Taxol, Tykerb (Lapatinib) and Zometa. I am tolerating the side effects fairly well and am responding greatly to the treatment.

I am not sure if this is relevant to the topic or not. You all seem much more knowledgeable on the subject than I but I found the discussion to be very interesting.

I was first diagnosed with DCIS stage "0" in March of 2004. I went through a lumpectomy and radiation with no node removal. They even went back in a second time and removed more tissue to recheck the margins which once again came back clean. They assured me that they had removed all of the microcalcifications that were present and that I was now cancer free. I continued to have mammograms and checkups done every six weeks. I thought that I was very blessed to have caught it so early and was thankful that I didn't have to have a mastectomy.

In December of 2005 I came down with a gall bladder attack and when they went into remove it they were shocked to find cancer spread extensively throughout my liver, I also have two spots on my spine. The doctors seemed to be completely baffled as to how this could have happened. The only explanation they had was that a stray cell must have been missed and that it had entered into the blood stream. They still do not believe that there was any node involvement and they keep telling me that even if they had removed the entire breast that the results would still be the same. I have been plagued with the over whelming feeling that if I had opted for a mastectomy instead of a lumpectomy that I may not be sitting where I am today.

I worry about other women who are initially told that they have DCIS and are stage "0." I worry that this could happen to them too. I kept hoping that new research would come out that would possibly change the way they go about diagnosing and treating DCIS and other early stage breast cancers.

Some of what I have read here on these posts regarding this topic of hidden margins is difficult for me to understand. Are these new findings suggesting that new techniques should take place in the initial diagnoses and treatment of early stage breast cancers?

Can someone please explain these findings and what they mean in laymen terms that I can better understand.

Thank you so much everyone, I truly appreciate all of your great insight and depth of knowledge on the subject.

Sincerely,
Nicola

Nichola;

I think it is possible that your cancer simply did not travel via the underarm lymph nodes. My nodes were negative but the cancer had chosen another way to spread.....upwards via my supraclavicular node where a 1 cm tumor was found. I think it is fairly obvious in my case that the cancer was also other places as well. I received agressive chemo with AC and Taxol and commencing the last Taxol (4 of each AC and Taxol) herceptin followed by radiation, arimidex and now actonel. My worry now is that I have been off herceptin for 3 months (began it in July, 2005) and worry about spread. I do not trust clear margins period.....never have. My view is that all with her2+ bc regardless of stage should get chemo.

Cathy

[Jean]

Interesting - from the on start of my dx. I have not trusted the facts given to me by the dr. It just did not make sense - many many women who were early stagers with no node involvement - were having progression. When I asked one onc did he believe that the main pathway was the lymph nodes? He stated that 25 yrs ago that was the belief - but that today we know that the blood circulatory system can pass the cells. As one oncology resource nurse told me from NCH - compare the lymph node to a basket that sits in the drain of a sink. It's purpose is to catch and filter out - now that basket has small tiny holes does any food particles get past the basket such as a small tomato seed? These cancer cells love to travel and set up shop elsewhere - my margins were large 25MM after removal of a 3MM tumor. (I was not impressed nor did I feel it was as favorable ) as the surgeon said it was. Was not or never will be comfortable making treatment decisions based on these factors. Rather I am deeply convinced (as Debbie) that the cell characteristics are the factors to examine. I do feel that a short time from now the future treatments will be decided upon the character of the tumor and the cells. For those that are early stagers way too many are experiencing recurrance! Currently many early stagers are now approaching their treatment decisions based on different factors. There is a study being conducted at Cornell with early stagers node negative - where the surgeon is doing a bone biopsey along with lumpectomy to test for the presence T cells. I had tried to get into this trial but was unable. I have lost two friends who both made the decision to have a mastectomy both were early stagers - they did not have any radiation.. I lost both of them within ten years! Much has changed in the last 8 yrs. since I lost them in the treatment of bc. The information the dr. gathers about a tumor's margins is important for treatment but does not usually influence your prognosis or the likelihood of recovery without metastasis or recurrence. We must always remember our bodies are complex and there are still many unanswered questions. I am doing all I can to deal with my bc (I like Cathy) believe in aggessive treatment against an aggessive disease. I am concerned for the newly dx. women who are told "don't worry we caught it early" I shake when I hear that. Being a history buff I often think of the Civil War when the poor soliders had their limbs removed without anesthesia, sounds mid evil. Well I feel the same sense of mid evil practice when a onc. says your tumor is small therefore your lucky...your cancer was caught early..etc. well that does not mean that it has not already moved along. Also, it is important to realize that while mastectomy removes nearly all of the breast tissue, a small amount remains. So, although this operation markedly reduces the risk, a cancer can still develop in the breast tissue remaining attached to the skin after surgery. There has been great documentation on women with a small tumor who choose lumpectomy and radiation can expect the same chance of survival as those who choose mastectomy. There are many many questions yet to be answered. I pray each and everyday for all of us and I desperately pray for a major break through on cancer treatment. I even dream of it and when I wake up I am sad - because it is a dream. But I will not give up my dreams. As my husband said to me during my herceptin treatment today - "Now it is in God's hands"


Jean

[dlaxague]

Hi Nicola,

You asked: Some of what I have read here on these posts regarding this topic of hidden margins is difficult for me to understand. Are these new findings suggesting that new techniques should take place in the initial diagnoses and treatment of early stage breast cancers?

Can someone please explain these findings and what they mean in laymen terms that I can better understand.

I don't think that these findings are suggesting anything yet. They're really just asking more questions, based on their observations about cells in the vicinity of the cancer. Researchers are looking at the cells near the cancer from many different perspectives, because they're realizing that there is interaction between them and the cancer cells themselves. The way that interaction goes probably has much to do with what happens regarding cancer growth. Although they're learning more and more about this, each new understanding brings yet more questions to be answered and it will probably be awhile before this knowledge translates to understanding about better treatment.

The particular study that started this discussion has interesting implications. What if they DID find a biomarker that could "detect the field prior to the development of frank cancer"? What would they DO about that? Mastectomy seems harsh enough for DCIS - would women want that solution for a condition that may or may not someday become cancer? Our perspective (women already diagnosed) may not be the same as the average woman-on-the-street's, and I hope that in addition to looking ways to detect this "early" stage of precancer, they are making progress re: what to do when it's found. Many questions remain - the first that occurs to me is to wonder how many breasts have these abnormal cells (and perhaps the theoretical biomarkers that accompany them), yet never develop cancer? It's interesting information for discussion and brain-play but nowhere near to being useful in real life (yet).

Debbie L.

[VaMoonRise]

Thank you everyone for your great responses. I hope to hear more about this in the near furture, it is definitely very interesting.

Nicola