How would you feel?

nitewind · 10-21-2007, 06:51 AM

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 · 10-21-2007, 06:58 AM

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. · 10-21-2007, 07:41 AM

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 · 10-21-2007, 07:51 AM

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 · 10-21-2007, 07:53 AM

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 · 10-21-2007, 07:54 AM

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

MagnoliaforJenny · 10-21-2007, 08:07 AM

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 · 10-21-2007, 08:28 AM

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 · 10-21-2007, 08:29 AM

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!

10-21-2007, 08:35 AM

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 · 10-21-2007, 08:47 AM

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 · 10-21-2007, 09:03 AM

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 · 10-21-2007, 09:11 AM

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 · 10-21-2007, 09:27 AM

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 · 10-21-2007, 09:42 AM

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 · 10-21-2007, 11:35 AM

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 · 10-21-2007, 11:44 AM

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 · 10-21-2007, 11:49 AM

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 · 10-21-2007, 11:53 AM

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 · 10-21-2007, 12:22 PM

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...