Maintaining trust

AlaskaAngel · Posted: Thu Jun 09, 2005 7:33 pm Post subject: Maintaining trust

I am one of quite a lot of HER2+++ breast cancer patients who followed the oncologist's advice and went through chemo without any Herceptin.

My understanding is that the recent clinical trial results clearly indicate that those HER2+++'s who had chemo with Herceptin have a far lower recurrence rate. So logically my understanding is that those of us who never had Herceptin have a far HIGHER recurrence rate.

People like me followed the advice of the oncologist and went through some pretty unpleasant chemo, commonly Adriamycin. Now when I read the articles discussing the advantages of Herceptin, I find that oncologists have not mentioned what those of us who did not get Herceptin should do. The worst thing about it is that they are not even acknowledging us at all.

Why is it that oncologists think that Herceptin helps people who are newly diagnosed, or people who have recurrence, but they are dead silent about whether it is useful in any way for the rest of us -- who are, after all, the ones who are now stuck with the far higher recurrence rate.

How can we have any trust in them at all if they continue to avoid any mention of us?
_________________
Dx Dec 2001 at age 50
Lumpectomy Jan 2002, 1.6 cm IDC plus some DCIS
Node neg
ER+, PR+, HER2+++
CAF x 6, 35 rads+boost
NED
Tamoxfen 1 3/4 yrs
In 2 clinical trials
bc for mom and 1 sis and 1 aunt and 1 granny
ovarian cancer for 1 aunt

Kristen · Experienced user Joined: 01 Nov 2004 Posts: 60

Hi Alaska,
I would like to know the same thing????? I have put a call into my oncologist but so far only spoke to her nurse practioner, which is OK but I asked her the same question that you ask here. She is going to discuss it with my doctor so when I come in for my appt in August hopefully some light will be shed on the subject.
I know this is a very frustrating topic right now for those of us that HER+++.....and I just hate the fact that I was not more informed at the time of my dx just over two years ago.
Maybe Leo will be able to shed some light for us...
Kristen
_________________
Dx 3/03
43 yrs old
Invasive Ductal
1/14 + nodes
lumpectomy 1.6 cm
3 sugeries for clean margin & nodes
A/C & Taxol Dose Dense with daily Nuprogen
38 Rads
ER+/PR+
Her-2/neu +++
Stage 2
Tamoxifen 19 months
Treatment Finished 12/30/03

leo · Site Admin Joined: 23 Sep 2004 Posts: 1574

Hello

Let me see if I get your question straight:
- You had a HER2+++ tumor, but received standard chemotherapy without Herceptin, at a time when it was not available or it was not proven beneficial
- Now you'd like to know what to do, whether to get the Herceptin now or not ?

If that is correct, there is no easy answer for this, as there are no trials saying that giving Herceptin at a later date is beneficial or not. I understand it can be frustrating, but sometimes giving single-agent chemotherapy can just make things worse. I am not expert in this field, but I am curious as to what physicians are doing with this. I suspect they are not using Herceptin outside clearly established protocols.

best regards,
Leo
_________________
Leonardo F - Webmaster Cancer Forums
Disclaimer: this information is for informational purposes only. It is not medical advice.

Kristen · Experienced user Joined: 01 Nov 2004 Posts: 60

Thanks Leo,
At the time I was dx there was a trial going on for early stage, but for me I didn't even realize that I was HER2+++ or even what the heck it was. It wasn't until much later when I got all my path sent to me and doing my own research that I figured out what HER2 even was.
Maybe my oncol at the time mentioned it but I was in such a fog, but still I believe I would have participated in the trial. I was in a trial/study for sentenal node biopsy. Ok so now I need to move on and get past it!!!
I don't believe they are willing to try herceptin alone at this time, but maybe some new trials will be coming in some day..
Thanks for the input Leo.
Kristen
_________________
Dx 3/03
43 yrs old
Invasive Ductal
1/14 + nodes
lumpectomy 1.6 cm
3 sugeries for clean margin & nodes
A/C & Taxol Dose Dense with daily Nuprogen
38 Rads
ER+/PR+
Her-2/neu +++
Stage 2
Tamoxifen 19 months
Treatment Finished 12/30/03

AlaskaAngel · Posted: Sat Jun 11, 2005 2:44 pm Post subject: Maintaining Trust

Hi Dr. Leo. Whether or not anyone has "all the answers", the continuing dialogue is important. You do have the question correct and I appreciate once again your straightforward response.

The recent Herceptin trial outcomes certainly raised more questions. What I want to understand is why there is lots of open discussion about how those at early stages who have never been treated can benefit, and there is lots of discussion about how those with mets can benefit, but so far there is dark, repressive silence from oncologists about this question:

"What approach is being taken in regard to establishing better clinical data about how the use of Herceptin affects those who have had chemo without Herceptin and who are currently NED?"

To me if the results of the clinical trials for Herceptin use for early bc clearly indicate a significantly lower recurrence rate, then logically those HER2++'s who are still alive and who have never had Herceptin are going to continue having a significantly higher recurrence rate. So why is there not discussion about clinical trials for those who have been treated but have not received Herceptin?

I know that one concern is cardiac toxicity. I know that there are lifetime limits on the amount of Adriamycin one can have, and also that some people who are HER2+++ and who have a low ejection fraction may not be able to tolerate more chemo-in-combination-with-Herceptin.

But what about the possibility of a clinical trial giving one combined dose, or 2 combined, dose-dense doses to those who have a good ejection fraction/MUGA or echo to see if early stage bc survivors who are NED end up reducing their recurrence rate?

(I do know it probably means losing hair again. I still ask.)

I have to also be very honest here with you about other aspects of being HER2/neu that are certainly not your fault personally, but that still are part of the breast cancer picture as a whole that we all are part of. A major aspect of the current HER2/neu confusion is unfortunately due to the lack of open discussion about HER2/neu all along with many of those who have breast cancer.

I am not raising rabble here. I am just asking that those who know the most about oncology try harder to avoid continuing to make that mistake.
It is up to oncologists to see our questions not as something to avoid answering, but as an opportunity for maintaining (or restoring) trust with HER2+++ patients who went through the nastiness of Adriamcyin without Herceptin at the advice of their oncologists; patients whose cancers were not even tested to find out whether they are HER2+++; patients who were never told what their HER2 status is or even why it could be important to know.

If oncologists truly don't know whether Herceptin is beneficial to those who have already completed chemotherapy without it, or how much benefit it would have for us, then at a bare minimum they should at least communicate with us about what they are actively doing about that to get better answers for us.

(I would like to at least know they don't just assume--or even worse, hope--that we are all dead, which is what their silence is saying to me.)

Respectfully,

AlaskaAngel

	Cancer Forums Forum Index -> Breast Cancer Forum	All times are GMT - 5 Hours
Page 1 of 1

A website for discussions about any type of cancer, including lung cancer, breast cancer, mesothelioma, prostate cancer, laryngeal cancer, leukemia, lymphoma, multiple myeloma and others