Lani

If you notice in my post I did not say that this was my friend. This was a woman whose oncologist asked me, as a special favor, to speak with her.

I phoned her, and then emailed her articles to help her understand her2 breast cancer as she felt she had undergone a mastectomy and as they had only failed to remove a lymph node which had now been removed that she had no further risk and that her oncologists concerns were unfounded.

I emailed her and her oncologist about the article about ectopic breast tissue in the axilla as a source of unexpected metastasis, so they could look there particularly when they did her MRI

I gave her the name of one of Dr. Slamon's collegues who sees patients for a second opinion. It became clear to me with time (or maybe this was just my take on it) that she just wasn't one to listen (or not one at this stage) to anyone and only wanted to see if she could find someone to treat her with Herceptin without chemo and/or to treat herself with phytoestrogens, so I pulled back-- with her knowing if SHE wanted to contact
me in the future she could.

Around the holidays I read your first post and that of Nicola. I couldn't find your post, but referred to it saying there was someone posting on the website who sounded as if she could be a friend of hers talking about her as well as another poster, Nicola, with a similar story. I put it off for several days/weeks but finally wrote her an email in which I put in the header of the email, that she might not want to read the body of the email but if she did, she might learn more about others ie, that despite what her original doctors had said, she was not the only one who had local recurrence in a lymph node or even more distant metastasis who started with a diagnosis of DCIS.

She responded very angrily and, although thanking me for my concern, asked me to never again be in contact with her since she felt it was my purpose to scare her.

I entertained the idea of letting her know that this website is not only for enlightenment, which can or cannot be scary depending on one's nature, but also for helping others, which can itself be therapeutic. I refrained from doing so.

This is a long explanation of why I cannot contact this lady.

I hope someday she evolves to utilize or contribute to this board, but she certainly seems light-years away from that at this time.

As I have never utilized her name or given any identifiable information I feel I have not risked her anonymity in any way.

That said, there are some pretty fine breast cancer specialists in Michigan-- Max Wicha is the big proponent of the stem cell theory of breast cancer (I believe he is head of oncology at the UM MedSchool in Ann Arbor) and Daniel Hayes is a very thoughtful oncologist at the same institution who speaks frequently on metastatic breast cancer.

Since hers is a very rare problem it is reasonable to go to Sloane for a second opinion. I would try to see someone in Michigan who is thoughtful and have them refer you to whomever at Sloane they feel would be the most likely to have encountered patients with stories similar to yours, especially if your insurance will go along with more than one second opinion.
Oncologists tend to like to treat things according to the "textbook" and it seems a textbook has not yet been written which includes cases similar to your friend's case. I plan to email to this lady's oncologist posts from this site by you and Nicola, as I know she had never encountered such a patient in her years of practice.


If I hear more follow-up or feedback from this lady's oncologist I will let you know.


This has been rather long-winded, but probably terribly unsatisfactory to you. I just wanted you to know why I was coming up "empty-handed"