HER2 NEU 3+ TEST RESULTS

JuJu-

Wow, I am not sure about that... I had the older test done in 2001, which I guess would be the IHS, and was 3+++.  I was randomized into the control group and was not supposed to get Herceptin, which I was not happy about.  I ended up leaving my med onc at Duke (with his blessings, since he could not give me Herceptin off study) to go to a med onc in private practice that would give me Herceptin for 1 year.  Personally, I think that saved my life.  My cancer was Stage IIB, 4.5cm Er-/pr- with 5 of 49 nodes positive. 

With that said, you can guess what my recommendation to you would be...get the Herceptin.  But only you can make that decision for yourself.. but don't let one Dr. dictate your treatment.  YOU are ultimately in charge, and if you don't get into that study, there may be another one somewhere else.  Or, like me, forget the study and just find another Dr. to get the best treatment possible.

good luck-- Stefanie

I know nuttin' about this but am going to post to bump it up. MK

Juju, take a deep breath, and another. If I were you, I would gather all my reports, all my films and slides and go somewhere for a 2nd opinion. Most doctors will say any cancer that is stage II, I or 0 is considered early. So even with a 2 cm tumor and positive nodes, if you are a stage IIB, that is still considered early...because it has not metastasized beyond the nodes. It is still treatable and curable! 30% chance of recurrance means 70% chance of remaining cancer free....and even if it did dome back no one says you will die from it. It can come back locally and be treated, or even if it comes back outside of the breast, it can still be treated.

If further testing will have implications for whether or not you take Herceptin, it is absolutely warranted. If you are not happy with your medical team, that is another great reason to look for a new team. You deserve to be comfortable with your docs.

Please consider seeing another doctor also if you feel your mood really is too low. Oncologists are not specialists in treating depression, and if you have enough symptoms, a psychiatrist is the right one to see. it is very common, especially dealing with what we are going through...

Hang in there!
Lori

Actually, both my med and rad onco have said that if my cancer returns, I will die. Today my rad also told me that my tumor was 2.9 cm instead of 2. They added in the .9 cm wedge of my biopsy to the primary tumor because they did not know where the wedge came from. Today she said the primary problem is the 5 positive nodes. I knew this from the beginning. I am finishing treatment there with the rads and I believe that I will look for a new doctor. I accept the fact that if the cancer returns, I will die, but I certainly want a doctor who wants to fight with me if this happens. My problem is I am going to the best medical center in this state and I will need to look for someone out of the area.

I am really upset, but this rad onco has said this to me twice and my med onco once. I believe they follow protocols only at this facility and are not interested in the individual patient. I can not accept the fact that they will make me comfortable and let me go.

JUJU

According to my chart, I do not have gene replication so I am not eligable for Herceptin. So I guess that settles the HER2 test question.

I can't believe your docs would tell you this!  It's absolutely appauling!  I had stage IIIA with one node, 6cm tumor and not once have they said this to me.  Even though, statistically, I have a 25% chance of recurrence, like Lori said, that's a 75% chance it won't.  I am the eternal optimist and believe that I will be fine.  I've seen so many women on here that had a ton more positive nodes and are here to talk about it.  There is no way a doctor, no matter how good they are, that you would die if you had a recurrence.  Everyone is an individual and there are so many different treatments.

 

GO GET A 2ND OPINION!!!!!!!!!!

Juju-
I was told I had a '50/50 chance' of the cancer coming back. I thought those odds stunk, but we are not numbers! I had 5 positive nodes too. I wasn't expecting any positive nodes (i thought they 'caught it early' ba haha) and had to deal with that, and a tumor that was 4.5 cm big. but you know what? i am almost at 5 years, and if i do have a recurrance, i am going to be like the energizer bunny. we've had some of those here on this board, some are still kicking and some are beautiful angles in Heaven. whichever I turn out to be, it'll be a long fight. Don't accept the 'if the cancer comes back you'll die' routine, that could very well be in 25 years. take it one day at a time. people with positive nodes to NOT always die of cancer. look at lance armstrong! he was a STAGE IV !!!

sounds like your Dr/s are shmuchs, definintely find some that you believe in, and that'll make a ton of difference in your outlook. you have every right to be angry, but try to find a way to vent it out, and not let it ferment inside you too long. we all know what you're going thru!!
(((BIG HUGS)))
Stef

JuJu: I read your post yesterday and was so mad that I couldn't respond. I thought that I might feel differently today but I am still as upset and perhaps even madder. The first thing I would do is RUN, not walk, as far away from the onco team that you have and find another one.

First, as someone said, a 2nd opinion will NOT change the fact that you have cancer and mets. But, it will perhaps change your treatment option as well as help your mental status. When my father was diagnosed w/ lung cancer about 15 yrs ago, we were all heartbroken. But, we kicked in gear and started researching. (before the days of the internet) I called Richard Bloch (H&R Bloch) as I had read his book. He personally spoke w/ me for a long time on the phone. The one thing that I remember that he said, and I used it when I was first diagnosed and then rediagnosed, was this....FIND AN ONCONOGIST THAT FEELS HE/SHE CAN HELP YOU. NO MATTER WHAT YOUR PROGNOSIS, HE/SHE NEEDS TO LET YOU KNOW THAT THERE IS HOPE. Sounds to me like your med onco doesn't know what HOPE is. When I was rediagnosed w/ mets to the bones, I was scared to death. I thought that it was a death sentence. I tried to keep a brave face but inside I had almost given up. My onco told me that we could beat this. She couldn't promise that it wouldn't show up somewhere else but then what promise did I have that I wouldn't walk across the parking lot and get hit by a car???? It has been 2 yrs for me now. My cea is below normal as are the other tumor tag tests. My PET scans show nothing more than the original spot that was  seen 2 yrs ago. My medical team is still giving me support as are my family and friends and the wonderful women on this board. So here is what you have to think about doing....finish your rads but while doing this make appts w/ other med onco. It doesn't have to be just one. If it takes 3 different interviews before you find one you like then you go to 3 diff appointments. DON'T YOU DARE GIVE UP!

I'm sorry that your med onco team is like this but what they don't know is that you have a group of women that fly on an imaginary pink airplane, w/ pink feathers flying everywhere, that can and will  give you support and knowledge.

Hugs and prayers and lots of positive thoughts....Deb

Juju-I'am sorry you are going through all of this.Do you have a human resources rep. through your employer? Perhaps he/she can help you deal with the ins. co.If that does not work -try speaking with your dr. directly. Physicans like to be paid , and will more than likely help you find the person who will set this straight.I had the same thing happen to me before my surgery.I know how stressful this can be.
I have to ask if you have someone who is supporting you through this process? Please do not take this the wrong way. It sounds like you could use an advocate(family, friend)to help you . This will take some of the pressure off of you. If I had to deal with your physicans I would be stressed and depressed too.You sound like you have carried enough of this alone.Don't be afraid to ask someone else for help, believe me we can all use it during these times.
I'am concerned that you have cancelled your appts. Are you changing Dr's, or do you have other plans?Maybe, you can just relax for the rest of today, and start fresh tommorrow.
Hugs,
Michelle

JuJu I am so sorry you are having to deal with so much. The insurance situation can be solved just do not pay one cent and eventually they will call each other. I don't know how many times I had to deal with stupidity like that with the insurance and whoever was billing them. Get a friend or someone to help you make some calls to them, but you sit nearby to say "yes" when they need you in person. I really think you need to find an oncologist you can relate to. I did not have further treatment and went to an oncologist twice just because I wanted to be sure I did not need chemo, etc. He was so rude and know it all that I was more upset than anything. He told me to come back in two years. When I went by the desk and the girls wanted to make my next appt and I told them it was two years away they were shocked. They said no one waits two years around here, so you know how that made me feel????? I never went back. Of course you need to find another doctor you can trust to hold you in his care. I will keep you in my prayers, MK

Hi JUJU,

I'm glad you are feeling better. You have been through alot!

I also had trouble with insurance. I was referred to a med onco but my insurance said he had a different address then what they had so he would not be approved. I called twice with the same answer. Insurance referred me to another med onco closer to me so I went to see him. He was AWFUL! He had a dirty office, a nurse with long designer fingernails and smelled like smoke, told me I had a 50% chance of survival and was just not positive at all. I was shocked and my nurse friend who went with me said he had a bad bedside manner and I should find another onco. I just sobbed in the parking lot and went home so depressed. Two weeks and several phone calls later, I find out that my insurance company had not updated their records for 2 years and the med onco that I was supposed to go to was covered afterall!! I lost 2 weeks that I could have been in treatment and was using sick leave too.

I LOVE my med onco! He is SO positive and encouraging.......and said if I had a recurrence not to worry about dying because new treatments are always being found. He says live one day at a time and remember to pray. He tells me all the time that I am going to be okay and to remember that when I start geting doubtful. He even said I was cute bald! lol I still have very bad days when I get depressed but I try to remember what he said...and not to give up hope.

I pray that you will find a good doc and support staff at a cancer center that will give you hope. No one should be told they will die for any reason...it just is not true! No one knows when or from what you will die except God.....and He gives us the grace to go through way more than we can ever imagine.

Don't you dare to give up on yourself. You are a beautiful person and being yourself is all you have to be!

Lots of hugs!

Beth