How would you feel?

[AlaskaAngel]

Nitewind,

Based on your profile, I think your onc's comment is entirely out of touch. In trying to understand why, a question that comes to mind is -- do you have other health conditions that could affect your prognosis, by any chance? (For example, making it so that certain treatments wouldn't be available to you?)

Christine and Joe have been in this battle for a long time and she is not just trying to cheer you up.

If you talk with him and don't get any comfortable explanation... seriously consider a different onc.

A.A.

[Lien]

Dear Susan,

I don't know what your doctor was thinking. What's a poor prognosis? Compared to what?
Your stats are about the same as mine, and I have about 80% chance of reaching 10 years without relapse. I didn't get Herceptin, so maybe your odds are even better than that. Lots of people with BC would walk to Paris on barefoot for such a prognosis. Don't let his remarks discourage you. Maybe he just looked at the fact that you are Her2 pos and ER/PR neg.

I echo what others have said: get yourself a second opinion and/or another doctor. You have enough on your plate. You don't need someone who discourages you. Even if your odds were not as good, what good would it do to sit and fret? You need to feel ok about yourself, to enjoy life as it is now, you need to feel trust & hope. You deserve to feel good.

Just my 2 cents.

Jacqueline

[Mary Jo]

Dear Susan,

First off I'd like to tell you I'm sorry you had to read something like that in your chart. It had to be devastating to read something so negative when all the ODDS ARE IN YOUR FAVOR. That being said, I too was told that my prognosis was poor BUT not because my surgeon didn't feel I had a good chance of beating this disease.

When my pathology report was read to me by my surgeon it was stated in there as well "prognosis poor." When my surgeon read that part to me, I also, was shocked and asked her "why does it say that?" She went on to explain that whenever a tumor is graded a 3/poor differentiated cells and strong her2 neu positive (also I had 1 node with one microscopic cell of invasion) the prognosis is "poor."

But..............and that's a HUGE BUT.............that's only medical terminology. That's before herceptin came into play........... THAT IS NOT US.

I hope that helps lift your spirit a bit. You are going to do fine. Your attitude is awesome and SO IS YOUR PROGNOSIS. Keep up the good work and get that positive attitude back. You WILL KICK CANCER'S BUTT.

Love & hugs,

Mary Jo

[Faith in Him]

Dear Susan,

I had many positive nodes as you can see from my signature. My onc has never told me I have a poor prognosis. Now, I know I'm high risk but my onc is under the impression that I can beat this. He has seen many women do it.

You are in a great spot. I believe what the other women are saying is true: it was based on an old outlook concerning her2/neu. So much has changed.

[Chelee]

Susan, I went through almost the same thing...maybe worse? I had just been DX...scared to death...had no clue about any of this? All my onc could say to me is I have a very bad prognosis. Never one word of encouragement. (I literally walked away after my 1st appt thinking: "I don't have a snowballs chance in he$% of making it".
That comment bothered me so much at my next appt I caught my onc off guard & said, "So how many women do you personally know of with Her2 bc & positive nodes that are still alive"? He looked down at the ground & seriously for what seemed like an eternity & said, "Well, I know of one women". (I was thinking to myself...that's IT, just one!) So I just knew I was a goner after hearing that. So Susan, I sort of know how you feel. I felt like why should I even bother...I don't stand a chance. But then THANK GOD for this board and one other...I found these women and they had her2 cancer like me. There were so many encouraging stories & I could actually see these women were STILL HERE and doing fine. (Unlike what my onc would have me believe.) He gave me NO HOPE! Zip, nadda, none! I even switched onc's in this group...and the one I have is NO better. She NEVER says anything encouraging to me either!


But after all I've been through, & the way my two onc's have made me feel about my BAD PROGNOSIS, which made me SO ANGRY...my attitude changed to a POSITIVE one & I decided I was going to prove them wrong...and I don't think I will...I KNOW I will. (I already have!)

In fact the 1st onc's I had down there just ran into me the other day by accident in the hallway and he had a very geninue smile on his face and seemed to be PLEASED at how well I was doing. He hadn't seen me in a long time. (He could NOT quite smiling!) I have hair now, and I'm still standing in an upright position...walking and talking! He looked almost gitty when he first saw me & even stopped to talk. He seemed quite tickled I was even alive. lol (That just just my feelings about it.) haha So point being Susan...IGNORE your onc remarks! I am sorry you read them...but he has no idea how you will do...not in todays world with herceptin added and the AI's, etc.

I am stage IIIA, Her2, 3+++, 5 positive nodes...and I could NOT have radiation which really worried me with my prognosis. But thank God I am STILL HERE and knock on wood doing fine all things considered. I have no clue why your onc would say that when your still early stage and no node involvment? Switch onc's and find someone that is IN YOUR corner if you can. You are going to do just fine. Thankfully you found this group and you can see for yourself your onc is just plain wrong. So its time to show him just how wrong he is like the rest of us women here are doing daily. You hang in there and SMILE.


Chelee

[Becky]

One day, the day after chemo, I had to wait a long time with my chart for my Leukine (blood boosting drug) shot. The nurses were busy so I perused my chart. There was a letter from my (then) onc to my surgeon thanking her for the referral. The letter outlined that I would get 4 ACs and 4 taxols and then go on Tamoxifen " for as much good this will do for her". S...! What a whack job he was - and I am here and he is no longer my doctor either!

[caya]

Hi Nitewind,

Just adding my two cent's worth here, and agreeing with everyone that "poor prognosis" and Her2 neu+ being synonymous is in the past. My onc. who was very cautious with my prognosis last fall has completely jumped on the Herceptin bandwagon - he now chides me for worrying so much and gives me a "well over 90% cure rate."

Is this onc. a breast cancer specialist, or just a general onc.? I think that can make a difference. Be positive, and look for a new onc. if you feel you need to.

all the best
caya

[Bev]

Ok, trying to be balanced. It may have been for insurance reasons and perhaps he thought you would have never read your chart. And several years ago, poor prognosis would have been accurate. Maybe he's not socially developed. It happens.

It's time to talk at the next appt. When I first heard 80%, I thought that wasn't all that great. My onc did say she thought I would beat it, but maybe that's bedside manner.
Personally, but I am biased, I think you will be fine.

It looks like you're doing the right tx, so a second opinion would be helpful if new tx like Herceptin comes along, with someone who believes.

I believe. BB

[Sherryg683]

Whoa, don't know what to say about that one. Like others have said, maybe he is just going by what the general "old" prognosis for HER2 was. Doesn't sound like he is treating his patients as individuals. What would make him consider you with no lymph node involvement as a poor prognosis. Especially with Herceptin and other drugs now available..I guess he would put "doomed" on the bottom of my chart. I didn't know you could even ask for your charts to read when doing chemo. I'd almost be afraid to...sherryg

[gin-tx]

I think you should sit down and have a discussion with your oncologist. My onc is so good about discussing anything that's on my mind. I know in time I'll have probably more problems as this is my second episode of bc, first in 1995. Sometimes you have to change docs if you don't think he is right for you. How are you able to get your chart to read all their notes, etc? I could never get my hands on mine, most of it is in their computer system, dr notes, etc. Yes I too would be devisdated and feel as you do.
ginkott1@aol.com

[Kimberly Lewis]

wow, I'm going to save your post, Maryann. Makes me feel silly for ever being down about my measly stage 3a... kim :-)

[kristen]

I agree with everyone here. I was Stage II and I am here 4 yrs later and NED.

[Andrea Barnett Budin]

Susan,

I am late to this thread, but so enraged I had to add my thoughts! What can I say? As a Stage 4 metastatic invasive lobular HER2+ bc person I didn't have to read my charts. I read the FACTS in books, on line, and freaked myself out. Then I gathered myself up, told my husband (the attorney/prove it in a scientific lab or don't bother me guy) he could read the books if he wanted, and I plopped them on his nightstand.

I began reading books on spirituality, gathering info on getting in touch with my spirit and consciously chose to IGNORE THE STATS. Boy did I have a poor prognosis. One onc told me that what I had was inoperable and incurable. He had known me 3 yrs and had 3 dghtrs and was obviously devastated by the news he had to relate. He said I would be on longterm chemotherapy for the rest of my life. That was August '98. Herceptin came out of clinical trials and was fast-tracked to be available to all met bc patients Sept. 28, 1998! I have been on it since '98 and I have defied the odds.

My post is not all about ME. It is about HOPE. About understanding that you are more than a statistic and you have a mind that can guide you through this ordeal and help you to survive and thrive.

Another onc parsed my *sentence* another way. Ok, he said. Inoperable. That's good. You'll do better without surgery. Because you'd still have to have chemotherapy and this way you'll be stronger to fight back. Incurable. Cancer is not yet curable. They're working on it. (He's in research 4 out of 5 days a wk.) But cancer can be controlled. It is a chronic condition. When you have a flare up we can treat it. When one thing doesn't work we can use a bunch of other drugs to knock it out and down. And as for you will be on longterm chemotherapy for the rest of your life -- don't think the worst. There are *kinder gentler* chemos out there. He didn't even mean Herceptin as at that time there was a LOTTERY SYSTEM to get it if you weren't in a clinical trial. Women who needed it and were given 3 mnths to live were all tossed in to a hat and if they WON that drawing -- they lived!

So I'm hoping, Susan that you will not take your onc's sadly antiquated view of HER2 and its one time terrible stats personally. You have the power to consciously choose to heal and be well and live a long, long time!

Sent with love,
Andi

[hutchibk]

I agree with Christine as a logical, less emotional, experienced voice of reason. And I would suggest, when you see your onc for the next visit, ask him what his purpose would be for writing that in your chart. He may be applying outdated thinking or he may have had a reason for it. It sounds pretty pessimistic on his part at face value, but please ask him. If he offers that he believes that Her2 prognosis and long term survival are not compatible, then change oncs...

Not to be too sarcastic, but at birth, all doctors could write "live forever prognosis... poor" on our charts. You can tell him I said that if he turns out to be a pessimist. And if that is the case, why does he even bother at all with the career he chose?

[karen raines hunt]

Your onc is relying on old stats by assigning a "poor prognosis" to someone who is stage 2 and receiving Herceptin from the beginning. I was stage 3 at diagnosis with a whopping huge tumor and 2 positive nodes. I truly believe if it were not for Herceptin, I would not be here. I did get A/C, then Taxol + Herceptin and continue to be NED!!!! The prognoses are changing in our favor now because of this "life-saving drug."

Karen

[gin-tx]

I never got a prognosis of a 'poor prognosis'. I was diagnosed Stage IV, but only had one lymph gland that was positive. and am only getting Herceptin and Aredia. I was Stage IV because of a tumor on my spine that resulted in 18 radiation treatments. So far I'm doing well, see the onc on Fri and will learn more than.

Good luck to you and hope you are doing well.
ginkott1@aol.com

[PinkGirl]

Hi Nitewind

I agree with bhutch. I would be interested in hearing your onc's answer to those questions. Why did he write that in your file? I would just ask him.