How would you feel?

[nitewind]

You may remember that I needed to ask my doctor about staging. I saw him on Friday right before my herceptin infusion. He confirmed that my breast cancer is indeed stage 2. He told me that there are a lot of factors taken into account. Ok, so I'm okay with that. I've been keeping a great attitude and had myself convinced that I'm going to beat this. I've been feeling good and trying to look forward to my future with a good attitude.
Now, as I sat in the recliner, getting my herceptin, I decided to read my chart, which I do every so often. The latest entry by my doctor was three weeks ago and at the very bottom of the page he wrote "breast cancer prognosis - poor." I nearly lost it! I started crying. My nurse came over and asked me what was wrong and I told her that I was doing fine until I read the bottom of the page. She was very sweet and said "everyone is different" and I asked how she would feel to see those words on her medical chart. I finished my infusion and walked home in a complete daze. I feel like I'm completely defeated, what is the point of continueing to get these infusions every week and being stuck by needles for all the continuous blood work. My own doctor doesn't think I have a fighting chance....why should I think that I do. I don't understand any of this, I thought I was doing well, I feel like I've been kicked in the stomach. I feel the way I did when I first got my diagnosis. I'm screaming on the inside and ready to quit everything. Be honest with me, how would you feel?

[KellyA]

Susan,

I would feel devasted, angry, lied to, defeated. HE IS WRONG. I have the same dx as you, only worse (3+ nodes), and my doc said "the odds were much in my favor, that I had a good prognosis (especially with Herceptin) and that I had an 80+% chance of beating this." Your prognosis would be even better. I don't blame you for feeling the way you do, and I would certainly feel the same. I would seriously think about your doc- you need a doc that has faith in you, that is up to date on the newest info. and that will fight and give you 110%. Thats the LEAST you deserve.

Love, Kelly

[Barbara H.]

I would consider finding another oncologist. I am stage four and have had mets everywhere. My oncologist still gives me a lot of hope. I do not have the feeling that my life is at an end and I continue to lead a full life and work full time. You have the benefit of early Herceptin and your staging is not that bad. You really need a doctor who gives you hope and believes in your recovery.
Best wishes, good luck, and try to think positive that this cancer will never return.
Barbara H.

[KRISS]

Susan, just reading your post I was screaming. How dare he! Your Dx does not sound poor to me. I don't know a whole lot but I do know you need an onc and medical team that believes in you and gives you hope! I would talk to him and ask why and them even scout out another Onc. Please think positive. There is hope!

[BonnieR]

I would feel like it was time to demand a talk with the doctor and an explanation. You should not have been allowed to leave feeling the way you did. And to be upset all weekend. And "Stage 2" would not seem to warrent that prognosis, either.
You certainly deserve clarification.
Please keep the faith.

[Ceesun]

I agree with Barbara...you have a good chance for a fine recovery. Cathy

[MagnoliaforJenny]

That was really awful for you to have to seen that, but it's worse that the Doctor has so little faith in himself!!

I'd demand a talk with him and if he cannot be totally honest with you, I'd search for another and soon.

Now maybe there is a chance, and maybe a huge chance!, that is written there for insurance purposes. Sometimes the wording has to be in a certain way for you to receive certain treatment. I don't have experience with cancer yet but I do know there have been other issues that "looked bad on paper" but were necessary to get the medical help I needed.

[mslinda]

I am so sorry that your doctor feels this way. Your diagnosis is not much different than mine. My tumor was 7mm, and I didn't get Herceptin. My doctor says that my chances of staying NED are very good.

You just hang in there and keep a very positive attitude and show him or her.

I'll be praying for you everyday. I pray for this whole board every day anyway.

Linda
S. Mississippi

[Sheila]

Susan
You are the same age as I am...and maybe what the Dr is saying is that with Her2+++ and ER PR neg BC, the prognosis is poorer...just like the larger the tumor and the more positive nodes, the prognosis is poorer....but that is JUST a STATISTIC! There are women on this board going strong as stage IV.....no one is giving up ! You need to show that inconsiderate Dr. that you plan to be around for a long time....prove his stats wrong....from your bio you should do just fine! Keep a positive outlook, and don't let this get you down...ATTITUDE IS ALOT IN THIS DISEASE!

[Grace]

Susan,

Sounds as though he just condemned most of us, so now we're all angry at him. Stage 2, 0 nodes! Poor prognosis. From where does he get his information? I know women who had more than ten nodes who are doing well years and years after surgery. You should at least speak to him, but perhaps, as some suggest, you should get another oncologist. You need all the support you can get. Sorry you're feeling bad.

[Christine]

Susan

There is no indication in your profile to think you have a poor prognosis....so stop being depressed. Your onc may have a older view of Her2 BC patients. Iam a m a brain metastatic patient in good health, and have no more life-treatening disease, and always have regular brain MRI'S TO KEEP ME IN CHECK. Your proile you've posted is a normal everday her2 variety and the death sentence we had been given in the passed has been lifted by new oncogene chemotherapy. Now Believe THAT11

Stay positive and be happy. Hugs Christine

[DonnaD]

Susan,
Don't let that **** doctor get to you. My bio is very similiar to yours, and we are going to beat this thing dear sister. If you don't believe me, believe Christine, she is our shining example of what Herceptin can do for us!

Keep fighting dear friend. My last Herceptin is Dec. 27 how about you?
Donna

[Brenda_D]

I have to agree with Christine. He may be looking at the Her2+ factor and going with old prognosis data.

When my Mom was ill last year, she was in the hospital several times, and her chart usually had a poor prognosis,
but she kept fighting and pulled through to the point that even her doctor was amazed more than once.
When we asked about the prognosis, the doctor explained that it is for a limited timeframe, like a snapshot, and subject to change at any point.
So poor one day, might change to good the next, with a new evaluation.

My tumor was 3.7 cm, and I had a positive IM node, and staged at IV due to possible bone mets, but my onc said we were going for the cure, and I just had really good scan results.

[PinkGirl]

Hi Nite
Honestly, I would feel the same way you do, until I posted
on this board and listened to the advice of all the "wise" ones.
Even I can tell from your signature that there is nothing there
to warrant calling it a "poor prognosis". Listen to all the smart
women on this board -- lots of them have been to hell and back
and they know what they're talking about.

I had a somewhat similar thing happen to me. I read my chart and
it said that I had a type of cancer that was considered "poor prognosis"
before herceptin came along.... just seeing the words in my chart sent
me for a loop.

I think your onc maybe slipped and bumped his head. You should not be
labeled that way at all. Listen to all HER2 girls....they know...........

[SoCalGal]

I would feel lucky that I found out my doc was an ASS before it was too late. There are a million GREAT healers out there. Find yourself a good one!

Just FYI, I had a extremely well-reputed Doc at UCLA who in 2002, in a panic stricken voice, said I was going to loose my life to cancer!

Of course I freaked out! BUT that was the last time I ever saw him, and guess what? I am not dead yet:) What I realized is that ironically, some cancer doctors are SO AFRAID of cancer.

Cancer, like life, is unpredictable, and un-curable. People who "should" make it don't and people who "shouldn't" (like me) are still fired up and fiesty!

I would confront him, to make him own his poor judgment, the way he took hope from you and then find another doc. Stage 2 can still be considered "cured". Have faith....

No one knows what tomorrow holds...chin up!
Flori

[dhealey]

I agree with Flori, your doctor is an ASS with a capital A! You should find another oncologist ( preferably a woman, they have more compassion) You had no nodes that were positive which means you have an excellent chance at beating this. There are so many new drugs to help us today that even stage IV woman are surviving. Find a new doctor and keep a positive attitude. Live each and every day!!!!!

[mke]

Well I'd be pretty upset too. Especially since I'm older than you, and I had positive nodes, and this is my second BC. So if you're "poor", I'm done for. But, actually I'm not feeling done for.

I think it's worth talking to the doc and finding out why he had that judgement and just what he meant by prognosis - poor.

[Mary Anne in TX]

Hey Nite!
I'd give that doc about 30 seconds of depression and then get mad as heck and prove him wrong.
My surgeon told me the same thing and I knew that he liked me. He just wasn't cool in dealing with patients in person. He also thought that I would be excited about getting a tummy tuck with reconstruction. That made me even madder than the "poor prognosis" thing! Well, I just got sooooo mad. I lost 20 pounds and have done everything I know to do to beat the Big C!
When I need some positive thinking, I think of him saying those two things! You know the funniest part? I really like him and would go back in a heart beat! He did an incredible job with my MRM and nodes. He's great! He just shouldn't talk very much!!!!
Get mad and get to believing what these warriors are telling you!
Here's to happier, more determined days!
mary anne

[tousled1]

You can't believe everything you read. You have an excellent prognosis and if I were you I'd consider seeing another oncologist. I'm Stage IV and I'm planning on being here for a very long time. I just got results of my scans and my oncologist is extremely encouraged and even said that if my next scans show improvement I may be able to drop the chemo and just go with the Herceptin. Never give up hope.

[madubois63]

Susan - I answered you on the other board, but repeat my answer here for those that might need encouragement too. I KNOW how you feel. I've had to deal with the whole "poor prognosis" thing 4 times. I never listen!! Donna put it in to words very nicely, and someone has got to be part of that small percentage. There is no reason why you can't be part of it. I wish my cancer was only stage II with no nodes!! I am not making light of your situation, but like Donna, I was diagnosed with Inflammatory bc (nearly 8 years ago). IBC is always staged at nothing less than stage IIIB - I was stage IV because it went to the nodes and chest wall. I beat the odds then. The cancer came back 4 years later, and I beat the odds again. Then, the chemo gave me leukemia. I had a bone marrow transplant and more chemo to beat that too. This past June, my liver started to fail. They gave me a less than 30% chance of surviving the year...I am here still and doing better than ever!!! My liver is fine, the leukemia is considered cured and I am bc free. It is all attitude and what you do with it. Please don't let doctor's notes or anything they say get the best of you. I keep telling them that they obviously don't know ME. After the relapse, I went to Sloan Kettering for a second opinion just to ease my mind. I totally trusted the onc I had, but just wanted reassurance. I left there more depressed than ever. They would have sent me home to die...Well, the jokes on them!! My onc never gave me a timeline. He always gives the truth and then discusses how we go about beating those stupid statistics to the ground. Every brick wall I've hit in this journey has been a hard one - bad prognosis, incurable, inoperable, it's every where, less than 2%, less than 30%, only 3- 5%...I've pretty much heard it all. I am not bragging or preaching. I tell my story (over and over again) to let you know that if I can beat what I've been through, you can face and defeat your situation!!!! Good luck and God bless...

[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.