Answer to Laurie S.

To Laurie S. I apologoze for not seeing you question sooner. As to my Mom's staging, and current status, we found ourselves in a peculiar situation. When we discovered the lump in her breast, I went out an hour later and bought Dr. Susan Love's latest book on breast health. I read it cover to cover.

The following day I scheduled a mammogram and ultrasound for the same day. The test were done only several days after I found the lump. I knew what it was the moment I found it, so I was not surprised when the mammo doctor told me it was almost certainly malignant.

I found a surgeon who came highly recommended and I researched their background. I picked a surgeon who listed lymph node mapping as one of their specialties. At the first visit with the surgeon, they saw I was very upset and tried to comfort me by saying that the tumor seemed to be less than 2cm. Yhey asked me how I wanted my Mom's treatment to be handled, as she is elderly. I stated emphatically that I wanted the treatment to be aggressive. They said OK. I said I was concerned because the tumor presented as two separate masses on the mammogram, which suggested to me that it was likely of an invasive type, as well as the fact that there was a palpable lymph node under the arm on the same side. Again they reassured me that it was clearly an early stage, and would be removed with a follow-up therapy of Tamoxifen. I asked what we would do if it were not an ER+, or PR+ malignancy, as she might be too old to handle any conventional chemotherapy. I was told, and I quote, "Don't worry, I'm sure it will be."

The surgery was done about one week from the moment I found the breast lump, and I was relieved that we had acted quickly. However, when the surgeon emerged from the OR to speak to me after doing an excisional biopsy, I was told that only the enlarged axillary node was removed during the procedure. I then asked if it was the sentinel node that had been taken. Too my horror, the answer was no. It was necessary to perform a second resection of tissue near the wall for a clear margin. Again I was told that there was no need to worry. I was discouraged from seeking radiation therapy, being told that it "was too much trouble and would not affect survival, only reduce the likelihood of recurrence, and that if it recurred locally, it could simply be removed again.

The real nightmare began with the follow-up pathology report. The tumor was ER-, PR-, and HER2+3. The single node removed was determined to be negative for disease.

Now, I was really worried. When the surgeon discussed the pathology report that showed the tumor's HER2 make-up, they said, "Gee, that's really weird." It was hardly a comforting response. My earlier fears had been confirmed. Now, I ws directed to seek radiation therapy. Swell!
So off to radiation therapy we went. The first thing they asked me of course, was what STAGE the cancer was. They were stunned when I said that we didn't know. I explained that we had no definite staging because there was no standard or sentinel node dissection. The same story was repeated at the oncology visit. I felt like the village idiot when I did not have the basic information needed for a treatment plan.

The next nightmare begins almost a year later, when I discovered axillary nodes that were enlarged on week and down the next. I finally pushed for a needle aspiration of an enlarged node. The node proved to be positive, of course. AGAIN, the same surgeon asked me how I wanted to handle it, suggesting that we might choose to do nothing, and that I should simply enjoy the time I had left with Mom, rather than fight. I was told, and I quote, that "It would be nice if we couold all live forever." This was tough to hear from the same person who earlier said not to worry when my concerns were expressed.

I insisted on a second surgery to remove as many of the involved axillary nodes as possible. The pathology showed that of the twenty nodes removed, twelve were malignant. There was also evidence that the cancer had spread outside of the lymph nodes themselves.

So here we are, a year after I first found the lump, with HER2+ B/C that has spread beyond the breast. The oncologist and radiation oncologist have concurred that the cancer was there all along, and had simply gone undetected and unresected. This is the reason that I tried hard to investigate the best possible vitamin/supplemt/nutritional plan. Mom is now undergoing a second round of radiaiton thereapy, to treat the nodes that would have been radiated the first time had we had the information back then. She is also now receiving Herceptin every week. We won't know how she is doing until we have some more diagnostics done.

I am sorry the story was so long, but I thought it would be useful to know some of the pitfalls of taking any doctor's recommendations as the final word. I have learned the hard way, that if you have a concern, you must INSIST that it be addressed thoroughly. Right now, I am fighting Medicare and the pathology lab, which refuse to pay for the new HER2 SERUM ELISA test from Bayer pharmaceuticals. They claim that it is to be used only in rare circumstances. I promise I will not go down lightly this time. I am tired of people pooh poohing my genuine concerns with respect to treatment. I will keep you informed of Mom's outcome as time goes by. Thanks again for asking.

This is a very interesting story, Tom! I think you truthfully saved your mom's life by being aggressive yourself. It has been my experience, being "elderly" (I hate that word! Elderly means someone 10 years older than I am!) that doctors assume if you are over 65 you don't need aggressive treatment because you will die sooner or later anyway and why get aggressive. My heart doctor seems to think that way. Luckily my oncologist has known me for the 20 years I've been fighting cancer, and was aggressive in treating me this time with herceptin and chemo. Thank you for sharing and best wishes to your mom! TriciaK

Way to go Tom! A hard lesson learned but the point is you are being pro active now. I have found quite a few discrepansies along my journey of 4 1/2 years. I get copies of everything I have done. I read and if I don't understand I ask. My doctor knows I will take no one's word for anything. He has thanked me several times for this saying I am one of his best patients and he doesn't have to worry about me slipping through the cracks. I have had some go arounds in the oncology about a few things. I have threatened to go to the administration because I felt I was getting the run around. I tell them I am not one to play games I am fighting for my life and I believe that one of the reasons I am a survivor. Enough said but I love to hear from people who are pro active. Keep up the good work and don't let anyone tell you you don't need to listen, ask questions and do your own research. Hugs, Sandy

I am sorry to hear that you have to go through all that. I hope for the best in your Mom's treatment. Thank you for sharing. You are remarkable!

Tom,

Your mom is lucky to have you around!

A couple of things:

1. If you don't like/trust your onc, FIND ANOTHER ONE! Yep, even in mid-treatment.

2. When I first had my lumpectomy, they took 20 nodes. 20 and they were all negative. I went on to chemo and a mastecomy for clear margins.
Yet, even with all 20 nodes neg, I developed metastasis 3 1/2 years later in my liver and bones. Later in brain and lymph nodes.

I tell you this to try and help you relieve some of your anger and any directed toward the med team. Not to say they were faultless. They could have take the sentinel only, or 20 nodes like mine. And regardless whether they were neg or pos, your Mom could still end up with mets, like me. Also, remember that even had her pathology shown Her2 + at first, she would not have been eligible for FDA-approved Herceptin at that time.

(My husband had a dream that the original BC spread through the lymph nodes in the center of the chest. Those, of course, are never biopsied.)

Who knows. Now, of course, you must focus on now. Stay educated, ask many questions before treatments, and like I said, change oncs if you need to.

This disease is all shades of gray. And the choice for me may not be as productive as the same choice for you.

Love and light,

Lisa