2nd Update on friend! Still frustrated!

[TAG]

Hi,

Thanks to everyone for your responses. I gave my friend a copy of all the posts and she appreciates everyones help.

She had her phone conversation yesterday with the Breast Cancer Clinic Onc she met with last week.

Basically he said she is ER + with the DCIS and ER - with the invasion so she is both. They are going with the ER Negative result for future treatment. They want her to do Radiation for 2-3 weeks and that's it. Nothing else, NO Herceptin, No Chemo and No Tamoxifin. My friend is back to being frustrated because she feels like something is missing, like a piece of the puzzle is missing. I agree with her but I don't think she knows what to do next.

She wants to have the test done to see if she carries the gene, another masectomy of the right breast and a hysterectomy even though she may come back that she doesn't carry the gene.

Can someone tells us about the Oncotype DX test? What is it and do you think my friend she ask to have this test done?

What do you think about her Oncs just having her do 2-3 weeks of radiation with NO future meds? Maybe this is all she needs and we are looking for something that isn't there, it's just black and white but we are seeing so much grey in her treatment.

Any thoughts or ideas you can share would again be appreciated!

Toni

[AlaskaAngel]

Even though they could be right, Toni, I personally would take the time and trouble to go to a different cancer center for a second opinion, if possible one that is tied to a known educational institution. The biggest problem with OncoDx is expense -- somewhere over $3000, but she should get the second opinion and ask them for their opinion about OncoDx in her situation.

AlaskaAngel

[Lolly]

I agree on the second opinion, but would also encourage your friend to start checking into clinical trials looking at whether adjuvant therapies will help reduce recurrence. Then if the second opinion coorelates with the original diagnosis and she still feels strongly that she's missing that piece of the puzzle, she could hopefully qualify for a trial and receive adjuvant treatment.

<3 Lolly

I know of a person with a similar story, except it was known that her DCIS was her2+ and ER + with a few areas of microinvasion. Her sentinel node was supposedly negative. She had a mastectomy and reconstruction and then during a followup visit a lymph node of considerable size was found, when an exam one month before showed no evidence of lymphadenopathy. The node was positive for her2+ breast cancer

An MRI was done, but no other primary tumor was found (the MRI was somewhat difficult to interpret because of an implant)

Her oncologist suggested chemotherapy and herceptin

She sought three opinions--two oncologists in private practice and one at a major cancer teaching hospital, who specializes in her2+ breast cancer

If you look up posts by a junior member named Nicola on this site you will see that she went from Stage 0(DCIS) to Stage 4. This is not supposed to happen by the textbooks--one theory is that there is some other area of invasive breast cancer somewhere in the breast that has been missed (or ectopic breast tissue on the axilla ) or perhaps some subgroup of her2positive tumors where only microinvasion is enough to promote distant metastasis. We are still learning about this disease--once her2neu testing is done reproducibly and well all over the world, perhaps we will discover its natural history more completely and understand its behavior better.

Hopefully Herceptin will also alter its behavior. It is only by sharing these unusual cases that we can point out the need for rethinking dogma.

MD Anderson, Stanford, Mayo Clinic , Dana Farber and Memorial Sloane-Kettering offer "second pathologic opinion" services. You can request your slides be sent their --they maybe able to estimate the price of the service ahead of time.

Has your friend had an MRI looking for cancer in her residual tissues, axilla? Again, these are best done at large teaching hospitals who are experienced in their interpretation.

[TAG]

Thank you for your information. My friend lives in Michigan but may be interested in going to Sloan for a 2nd opinion. I printed out your post and gave it to her yesterday. I told her about Nicolas story but my friend is also interested in the first story you talked about. Would you please give me more information on her or can my friend contact her?

Thanks again,
Toni

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"