I never go to other boards, but this is a horror story....

[al from Canada]

This is probably not an all to uncommon tragedy, (today was the first time I have visited another support board for about 1 year because this one is obviously the best and who has the time these days?? This post summarizes EVERYTHING we have all been preaching about overseeing your tx plan; here's what can happen if you let your guard down with devastating results!! )

My sister, who recently turned 40, has just died of breast cancer.

My sister was diagnosed with breat cancer in 1998 when she was 33, and had what we thought at the time was a successful mastectomy. Because she had 6 positive lymph nodes, she underwent local radiotherapy on the site of the scar, and systemic chemo with LMF to clean up any left over cancer cells.

She had oestrogen postive, HER2Neu negative, high grade Invasive Duct Carcinoma.

She was placed on anti-oestrogen pills since her surgery.

We thought she was fine until 2002 when she the cancer appeared in her hips and bones.

My sister never wanted to confront her cancer head on, and this lead to our first monumental mistake. Since her adjuvant chemo, her doctor said that her cancer was a thing of the past.

Unfortunately, this meant no screening, no annual scans, no check-ups, no follow-ups! He cancer re-appeared in 2002, however could probably have been detected in 2000 or 2001. When we finally realised what her 2 years of back pain were, the cancer was very advanced in her spine/hip.

She underwent radiotherapy on her spine/hip, had 3 cycles of A/C, and started on Zometa.

The radiotherapy stopped the pain pretty quickly, and the A/C made her feel good in a short space of time.

However, it didn't last long. The zometa gave her osteonecrosis of the jaw, so the infusions were stopped.

The cancer kept on progessring in her bones, and eventually made it into her lungs, her liver, and her scalp.

She went on Taxol, and after almost dying from this chemo, nothing improved. She was getting worse.

I tried to convince her oncologist to stop the Taxol as it was obviously not working, and was causing too many complications.

I wanted my sister to move onto Navilbine as it was less toxic, had less side-effects, and would at least be no worse than the Taxol. Her oncologist said No!

This was probably our Biggest mistake.

One week before my sister died, the oncologist agreed that the Taxol was not working.

By this stage, the cancer had progressed into my sister's eye, her other breast, her ovaries, her intestines, and had engulfed her lungs to such an extent, that she could not breath without oxygen.

She was in and out of hospital, and she was now too weak to try another IV chemo.

She was placed on Xeloda, but was given the wrong dose (one third of the actual dose that she required).

By the time we found this out, she was one day away from death.

She finally got the right dose of Xeloda, and died 12 hours later.

She died due to cardiac arrest. Apparently, the numerous lung mets put such stress on the heart, that it simply failed.

I am racked with guilt, because we let her oncologist push us around.

I can't get over the feeling that more could have been done, had we had an oncologist that listened, cared, and didn't give up on my sister at the drop of a hat.

We made many many mistakes, by simply accepting the advise of the doctor.

Stay Vigilant,
Al