HER2 Support Group Forums - View Single Post - your perpectives on prognosis (or lack of)

03-23-2004, 04:08 PM

I asked for and received very precise statistical prognosis for my disease. It was received in "layers" of bad news as they got more pathology from either the biopsy, mastecomy and other tests that were performed on the tissue.
At first they thought I had a very tiny tumour (.5 cm) that was extracted during the biopsy. At that time they told me I had a 2-3% chance of the cancer returning after treatment (which was intended to be mastecomy only). They also advised me that if I did nothing, there was and 80% chance that the cancer would kill me within 5 years.
After mastectomy, they discovered that the tumour was larger (1.7cm) and they told me that I had a 20% chance of the cancer returning.
Then they tested the tumour and discovered that it was HER2+ so prognosis was reduced. After all treatments including the addition of chemo, there is a 35% chance that the cancer will return. This is currently where I stand at.

I have a very aggressive personality and a high interest in controlling and making choices. I expect that I would have received this info from anyone that I was being treated by, or I would have switched oncologists.

I am currently voluntarily partnered with another woman in her practice so that we can give each other support. This other woman DIDN'T receive such detailed information, but she tells me that she wasn't sure she wanted it. (She has read me her pathology report (she doesn't understand it) so I know that her prognosis is pretty good...even if she doesn't know what it is...she is also not HER2+) The oncologist didn't initially offer her the info, while the same oncologist did offer it to me initially.

I was devestated to receive such frightening news as I have related it to a game of Russian Roulette...but instead of only having one bullet and 5 blanks, I get 2 bullets and four blanks aimed at my head.
When I first got the news, I did a fair bit of research on palliative care. I also did some serious research into planned "exit" options as I have no intention of doing any suffering or limiting my quality of life.
Since then I have adopted the philosophy that I am going to be one of the survivors, or else one of the breakthoughs that I have read about on our "articles" board will be available when I need it. I am just living life normally as though I were going to live to 100.
Thanks for your question. It was a good one.

03-23-2004, 04:08 PM	#2
Merridith from Canada Guest Posts: n/a	I asked for and received very precise statistical prognosis for my disease. It was received in "layers" of bad news as they got more pathology from either the biopsy, mastecomy and other tests that were performed on the tissue. At first they thought I had a very tiny tumour (.5 cm) that was extracted during the biopsy. At that time they told me I had a 2-3% chance of the cancer returning after treatment (which was intended to be mastecomy only). They also advised me that if I did nothing, there was and 80% chance that the cancer would kill me within 5 years. After mastectomy, they discovered that the tumour was larger (1.7cm) and they told me that I had a 20% chance of the cancer returning. Then they tested the tumour and discovered that it was HER2+ so prognosis was reduced. After all treatments including the addition of chemo, there is a 35% chance that the cancer will return. This is currently where I stand at. I have a very aggressive personality and a high interest in controlling and making choices. I expect that I would have received this info from anyone that I was being treated by, or I would have switched oncologists. I am currently voluntarily partnered with another woman in her practice so that we can give each other support. This other woman DIDN'T receive such detailed information, but she tells me that she wasn't sure she wanted it. (She has read me her pathology report (she doesn't understand it) so I know that her prognosis is pretty good...even if she doesn't know what it is...she is also not HER2+) The oncologist didn't initially offer her the info, while the same oncologist did offer it to me initially. I was devestated to receive such frightening news as I have related it to a game of Russian Roulette...but instead of only having one bullet and 5 blanks, I get 2 bullets and four blanks aimed at my head. When I first got the news, I did a fair bit of research on palliative care. I also did some serious research into planned "exit" options as I have no intention of doing any suffering or limiting my quality of life. Since then I have adopted the philosophy that I am going to be one of the survivors, or else one of the breakthoughs that I have read about on our "articles" board will be available when I need it. I am just living life normally as though I were going to live to 100. Thanks for your question. It was a good one.