your perpectives on prognosis (or lack of)

[jojo]

I understand that we had just discussed about the recurrence rate of her2 cancers. Now, I'm interested in hearing about your OWN experiences/opinions at original diagnosis (and/or recurrences):

1) Were you able to get your prognosis from your onc? If not, what was their reply?

2) Why did you decide NOT to ask for it?

3) How did you react upon hearing your prognosis?

4) Do you think we have the right to know our prognosis, even if our onc withholds info?

All ears (or rather eyes) here. :-) Many thanks! Hugs

[Merridith from Canada]

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.

[Linda in Calif.]

Hi JoJo: I stressed with my Onc. that I wanted him to be very truthful with me and to not hide anything. He told me if I did nothing about the cancer that I would probably be dead within 2 years. Because of all of the negative prognostic indicators ( Stage IIIA, multiple large tumors in breast, positive lymph nodes and HER2+++ ) we felt that there was no such thing as being too aggressive with treatment. Had surgery, chemo, radiation and participated in a clinical trial with herceptin. Once I had completed all of that he said I should go ahead with my life and forget about the cancer...it was gone. Right!!! I don't think so!!!! but I'm glad he's such an optimist. Anyway, I've been NED for the last year and am currently NOT taking herceptin. Had scans and tumor markers in Dec. and all came back clear/normal. As to how it's changed my life...I now say the heck with the housework when my 11 year old daughter wants to go to the park. I try not to sweat the small stuff because it's mostly ALL small stuff. My diagnosis was a wake-up call for me and a blessing in disguise. I feel I've been given the opportunity to let those I love know how I feel and live WHATEVER time I have left to the best of my ability and the fullest extent. I continue to see my Onc. and he keeps telling me I'll be fine. In Jan. he said he didn't want to see me for 6 months because I had been doing so well. I remain vigilent and aware of my body and any changes but have tried to take his advise and put "everything" behind me. I am regaining some of the confidence I had in my body. Not the easist thing to do. I hope this helps. Take Care, Linda

[Elisabeth from Ontario]

Upon initial diagnosis, (Stage 3a, 16 nodes pos, left mos radical, right simple with .25cm tumour found, her2 pos, ER/PR weakly pos) I was not given, nor did I ask for prognosis. I was told that this was very aggressive cancer and was treated as such.
When I finished my treatment, my oncologist told me that should I get a recurrance he could not offer me any curative treatment only management. Most importantly, I was to choose to go on living. Not an easy challenge. I discovered a mass in my upper abdomen 6 months later and a liver US confirmed mets I went back to my oncologist and he began to outline my options. Knowing that chemo could offer me no cure, at the time I wasn't interested in 'big gun' chemos, didn't want to go through the hairloss thing again and all the other unpleasantries that go along with most chemo. So I asked him- what if I choose nothing? He said that I would have about 6 months- that didn't really surprise me, I actually thought I would have less than that. Then he said that I didn't have to have chemo, I could just have herceptin if I wanted, though he could not tell me that I would have more than 6 mos with treatment, he did say it would improve my quality of life(QOL). So I resigned to the fact that my days were limited and believed that God has a purpose for my life and my hope was in hands rather than the hands of man.
Eight months later at CT showed new activity in my liver and some evidence of lymphangytic disease in my lungs, so I opted for adding navelbine to the mix which was supposed to be well tolerated. After 3 cycles I was unimpressed with QOL so we stopped it and took a 4 week break. Well that break was extended to 8 weeks because my sister had an aggressive brain tumour removed and it was Christmas. By the time I saw my onc again, I was not feeling great and my CT indicated some larger nodules in both lung bases. With the progress of the beast staring in my face again, I elected to try something more aggressive and am currently on taxotere and herceptin.
I still believe that only God really knows my prognosis, but He also gave me a mind to make choices and so I have.
I believe that we have the right to know our prognosis. I think I understand why many oncologists are reluctant to share such since it is so difficult to say how long. There are so many factors- tumour aggression, pre or post menopausal, where mets are- bone being the lest life threatening place for mets, liver and lung are more life threatening.
I do know that my life will never be the same. Time with my children 13,11,9 and my dear husband, is more important than washing the kitchen floor. I will continue to choose to go on living. But I have peace that when my life work is ended I shall be healed!

[Lolly]

When I saw my oncologist to discuss treatment options after surgery, I already knew from my surgeon that I had a very agressive, advanced cancer and that Herceptin could be an option for me later, so I knew my chances of recurrence after treatment were high. I felt agressive treatment was a given, and asked my onc what my prognosis was. He told me, in the most caring way, that with chemo and radiation the statistics showed a 70% chance of living 5 years. Really, this sounded good to me, and I am glad he was honest with us. We were able to shed many layers of denial and give it our best shot. When the cancer returned 6 months after treatment ended, it was not a huge surprise, and so I started Herceptin with high hopes that this was the godsend that would enable me to live a "normal" life again. My onc was again very honest with me, saying he had only a few patients who had tried it and only one had shown a good response, but the book was wide open.
It's been a little over 3 years, and I still wake up each morning amazed to be alive. In that sense, my life WILL never be normal again, and I wouldn't want it to be. I am a better person, I think, and consider cancer to have been a great teacher.
I think if a patient doesn't ask for a prognosis, it means they're not ready to hear it, and it could be a cruelty, and possibly even unethical, for a doctor to force the issue. They have to keep in mind the admonition, "First Do No Harm". Giving an unfavorable prognosis to someone determine to live against all odds could squelch one's spirit, and most good doctors know the human spirit is the most important aspect of healing.
Thanks for asking the question, Jojo, it's a good one!
hugs, Lolly

[Kitty]

Lolly,

Your story is pretty close to mine in how we dealt with original and recurrance (mine was 10 months later). Still on chemo & herceptin right now but I am very pleased to hear you are 3 years out and doing fine still. My mets have responded quite well to the treatment and I soon will be on maintenance herceptin only. We are all different in what we want to know, can deal with and how we look at things. I thank God every day for having another chance and having such a great quality of life. Here's to many more years for all of us.
Kitty

[patty D]

I was origianally dx with Stage II- 10 years ago.Did adrymycin/cytoxin chemo and was fine til Jan 2003 when i had a reocurrance to my lungs-Having worked in the medical field all my life I knew Stage IV meant "no cure-just treatment" which is the information my onc gave me. I began tx with taxotere and herceptin and it it did its job- My lung nodules have been"stable" since almost a year ago. In Aug of 2003 I was diagnosed with mets to the brain with 6 lesions-too many for GK my onc said so I did WBR- he said it would give me an extra 6 months-I changed oncs-he was not willing to do follow up scans- said once it went to the brain there was nothing to do unless I had symptoms. My new onc is much kinder- very realistic -answers my quesetions and willing to work with me in terms of treatments,tests We both know my "prognisis".I battle one thing at a time- Recently I had a scare thinking this had moved into mu CNS so I had a lumabar puncture. Thankfully it ws negative. Another angel on my shoulder!
-There are statistics all over the place and they are all very grim when it comes to Stage IV- - I ignore them! Yes we know Stage IV is "not curable" but by gosh it is treatable!And everyday they are coming around with new ideas and treatments!
I have learned we cant always choose our battles but we always have a choice how to fight them and for me there is no question but to keep those gloves on and fight as long and hard as the Good Lord gives me time! I use every ounce of energy to the good and dont look back on what "coulda been" That is such a waste! I thank God for every day I wake up enjoy the good days with my family and friends and roll with the punches on the bad, knowing tomorrow is a new day.
So gals- everyone get together ,keep the faith and prayers for each other. We are a tough bunchand will be making history and setting expamples for those to come. So hang in there- Patty D

[Kitty]

Amen sister - couldn't say it any better. Keep that fighting spirit!!!

[Janet]

Merridith,

I was very interested to read your post, and particularly that your doctors put a decreased statistical survival rate of 15% (80% to 65%) on discovery of your her2 status. You sound like you were diagnosed at stage 1? I was diagnosed at stage 1 (grade 3) in May 2003 and was told the chance of recurrence was around 20% without chemo and 14% with chemo. On discovery of the her2 status the prognosis was not adjusted, but then I did not push for it at that time. Since then I have been trying to find stats for stage 1 Her 2 recurrence, but I have been unsuccessful. I wonder where your oncologist got his/her stats from? Would be very interested to hear.