Update on how would you feel

[nitewind]

I just want to thank all of you for being there for me. I read each of your comments, out loud, and by the time I was finished, I truly felt a weight lifted from my shoulders. I was so overwhelmed at how much everyone cares. I think that I've really come to understand the term "sisters". I just put a call in to my oncs office to see if they can set up a time for me to go in and talk to him. I stressed that I needed to see him not talk to him on the phone. Well, I just got a return phone call and they don't know it they can squeeze me in to see the doctor. I spoke with a nurse and she wanted to know what was wrong, so I explained to her. I simply need to know why, after all this time, what prompted him to put "poor prognosis". After a year and a half of talking myself into believing I was going to be fine, he took that away with one sentence on the bottom of my chart. Long story short, she is going to call me back.
A lot of you asked how I got to see my chart. In the chemo room our charts are sitting right next to us and we are encouraged to read them because they are about us. I've read through mine many times. Also, some asked if I had other medical problems and the answer is no, unless depression is considered a medical problem, I mean, I know it's a medical problem but not like a life threatening thing.
Also, my oncologist is a not a breast cancer specialist but a general oncologist.
So, now I'm waiting to see if I can get in to talk to him but I just wanted to let everyone know where I'm at at the moment. I can tell you that thanks to all of you, I'm in a lot better place than I was last Friday when I left the chemo center. Your replies meant so much to me and you brought me out of a deep dark hole. I love you all.
I'll add to this update when I get to speak with the doctor.
Thank you again, I'm so blessed to have all of you in my life.
Hugs

[AlaskaAngel]

You were savvy enough to question what you saw, and that is the best indicator that you are ahead of the game.

I would bet you already realize this... but I think in everyone's best interests I would encourage you to be sure and let them know more than once in some way that reading the chart helped communication more than it hurt. Many medical facilities are still in the dark ages about that, with providers reluctant to have patients end up either confused or terrified by what they see and don't understand. We are at a time when the development of patient online access to the results of their labs, etc. is happening, and it would be a shame if the nursing staff were directed to hide the charts from patients. If patients are not sure they want to know, they don't have to look.

I too had a general medical oncologist for a number of years, and the amount of info they have to handle for patients with so many different cancers is truly immense.

A.A.

[Jean]

Dear Susan,
Just read your prior post...and now read this current post.
I have been away from the site for the last few days.
I felt so upset when I read you post. It is a shame that your
dr. does not have confidence in himself. It is his business to keep
his paitents thriving and never give up. We have heard of many
who have been in advanced stages of cancer and have had NED
dx. Shame on him on many levels. I think it is wise that you meet
with him/or/her in person to discuss this in detail. Hopefully he maybe able to explain why or what his comments truly mean. In any event,
do not allow anyone to take away your energy - that should be used
to getting well and fighting back. Herceptin has been our wonder
drug and when or if - you require additional meds., so be it. Thank
God - there are many different drugs now available to treat Her2.
Maybe you may have to consider another dr., one who is a fighter!
and not a chicken little with the sky is falling.

Good Luck with your meeting....and please know all good wishes
and big prayers are with you!

Kind Regards,
Jean

[chrisy]

Susan,
I just read your prior post. How would I have felt? I would have totally freaked, much as you did. I hope after reading all the responses you feel much better - and much more confident about your prognosis.

The fact that your oncologist is not a breast specialist may or may not have led him to put this notation on your file.

YOU know, however, that the Her2+= poor prognosis equation is old news, before the advent of Herceptin to prevent recurrence in early stage cancer. In fact, Genentech actually MARKETS Herceptin to doctors that way - I've seen ads touting Herceptin and referring to the "her2+ is poor prognosis"

The point is the story has changed, and as you are getting Herceptin you have a great chance of seeing cancer only in your rearview mirror from here on out.

[nitewind]

Just an update again. My doctor called me and said he couldn't recall why he would write that on my report. He said the only thing he could think of was at the original diagnosis, had I chosen to opt out of chemo and herceptin, my prognosis was poor. I questioned him as to why that would come up now, all these monthes later. He said that in the report he should have used the words "original diagnosis prior to agreeing to treatment". So, he apologized, I made sure that I told him what I went through having to think on his words all week end. He assured me that the herceptin is doing it's job and my prognosis is not poor. So, that's what I come away with today, apparently it was a mistake on his part. Holy cow, I hope he doesn't make any more like that one.
Once again, thanks to everyone, you sure helped me when I needed it.
Love

[Sheila]

Susan
Sounds to me like he is back pedaling...if you don't have alot of faith and trust in this onc., find another...you need someone who looks at the whole picture/....you as a long term survivor!

By the way, I love the saying below your signature about Christmas!!!!!

[cafe1084]

I remember getting my biopsy report back, telling me I was er/pr- and her2+ and beside it in capital letter was POOR PROGNOSIS. I thought I would wet my pants right there in the doc's office. You never expect to see those words related to your life, or potential lack thereof. My onc said these same 2 words to me on our first visit. I guess I have taken the simplistic view of it....cancer of any kind has a poor prognosis. That doesn't make those written words any more meaningful. Some onc's I'm sure are guarded about using any words other than POOR for this disease because up until a year ago, the prognosis was poor for most of us. Even they need some time to adjust their thinking. Prognosis-nothing more than medical mumbo jumbo to CYA in case of a potential bad outcome....cynical, yes, but accurate.