How do u feel about your over-all chemo trt?

I had seven positive nodes, so it seemed as if everything was a given and there were no decisions for me to make. I had a left mast, 4DD A/C and 4DD Taxol, 33 rads (when finished) one year Herceptin (when finished). I am halfway through rads now.

I feel like I am getting the proper treatment. I hope to say goodbye to cancer forever. This has been a rough year.

Miss S

Addendum (9-22): Now I am in CHF, have been permanently taken off Herceptin, and have suffered a heart attack. My LVEF was 33% at last test. My cancer tx (Adraimycin, Herceptin, rads to the left chest) damaged my heart, so I hope that I got enough to keep the big C at bay. Now I have heart disease and cardiomyopathy. Fun stuff.

I actually wish I skipped the Taxoteer. As my son say's I went from a physically active 43 yr old to a can barely walk 44 yr old.

I should have reviewed my family history and the drug better as the neuroapthy was bound to happen.

This is just MY opinion as I'm still not comfortable with the physical limits on the new me.

Hi Chelee

As a HER2+++ diagnosed in 2002 and tested in 2002 for HER2 (which my insurance paid for), at the time when the clinical trial was fully active, I think it was negligent for my onc not to at least briefly discuss HER2 with me. He failed entirely to let me know I was HER2 positive. Needless to say, he was among those oncs who failed to come close to having a mind that believed in a shared relationship with the patient in making decisions. Obviously, he also was far from thinking outside the box about any therapies other than toxic chemotherapies.

At the time I specifically told him that I was interested in participating in a clinical trial. Even though as a node-negative with a tumor under 2 cm I would not have qualified for the trial (and even if I did, I might have ended up being among those who did not get the Herceptin until the trial proved successful), he should have helped me to explore my options with clinical trials. However, his response to me was entirely negative. Instead of simply directing me to clinicaltrials.gov on the internet, he said "There are thousands of clinical trials."

Does that sound like an onc who can work with a patient in a cooperative manner?

Not to me. But at the time I was a typical confused newly diagnosed person who basically believed in doctors, and none of the aids that are available now to early stage breast cancer patients were available to me. Places like this website were in their infancy if they existed at all, and I knew nothing about them. There was no such thing as Adjuvant online, or Oncotype Dx, or approved Herceptin automatically prescribed.

I accepted the onc's advice and did chemotherapy, followed by radiation, followed by tamoxifen. Within 2 weeks of starting tamoxifen my libido crashed and a rather enjoyable sex life disappeared. Prior to chemo, the sole comment my onc made to prepare me for this was "You will go through menopause." How on earth is a fully functional woman to understand from that lousy comment that her sex life will be devastated, or know what her choices really are? 

I went to my PCP about the issue of loss of libido. He listened and said nothing. I then went to my onc about this problem. The first words out of his mouth were "Why aren't you talking with your PCP about this?" As far as he was concerned, even though he is the one who should know the most about the side effects of treatment, it was obviously not his problem. HE seemed to think he was being quite generous by being willing to prescribe the Estring. I stood there, in tears, mute.

I realized then that my trust had been very misplaced. Anyone who is that carelessly dishonest with a patient doesn't have a clue what the patient-doctor relationship should be.

WHERE are the endocrinologists we need to be part of our diagnosis and treatment plan? The one specialty that would bring intelligence and comprehension to the one-size-fits-all toxic treatment, who could comprehend that breast cancer is an endocrine disease not limited to the practice of oncology, and as such, needs to be analyzed and dealt with comprehensively throughout the body, with constant measurement of hormonal levels for the rest of the patient's life, with medication prescribed to match the patient's needs?

Yes, I'm 5 years out and NED. So are 60% of those with my diagnosis who never did chemo or radiation or hormonal therapy.  So are an even higher percentage of those who did no chemo but did radiation and/or hormonal therapy.

Dissatisfied, disheartened, and determined never to trust like that again,

AlaskaAngel