HER2 NEU 3+ TEST RESULTS

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JUJU8872
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Date Joined Jun 2005
Total Posts : 349
   Posted 7/24/2005 2:58 PM (GMT -7)   
Hi, my question appeared in another thread and it was suggested I start this one. I do not truly understand nor do I completely believe my onco -- mainly because I am not sure I understnad the results. When I was diagnosed I had the typical IHS test for HER2 (every one has that test) and it came back positive 3+. My tumor was  eventually measured at 2 cm and I had 5 positive nodes. My med onco felt that I would be accepted in that ongoing Herceptin for HER2 positive patients who were at high risk for recurrence, so I applied. Part of the study requires the FISH test . It is a more expensive test and supposed to be more definitive. My FISH result came back negative for gene replication  so I did not qualify for the test. My onco said that about 10% of the IHS positive results would be FISH negative. She said that this actually improved my prognosis.
 
Does anyone have any experience with this sort of result? I am still a little confused and am not certain I understand positive on one and not positive on the other.
 
JUJU

wackygal
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Date Joined Jul 2003
Total Posts : 857
   Posted 7/24/2005 4:14 PM (GMT -7)   

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


~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
"It's been worth everything I've been through,
 To do what I do"

                       To Do What I Do   -Alan Jackson, 2004


Skky
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Date Joined Mar 2005
Total Posts : 146
   Posted 7/24/2005 9:25 PM (GMT -7)   
Juju- Im pretty new to this (diagnosed in March). I just wanted to let you know I also had two different path opinions.One hospital said her2+++, and after surgery the other said her2-.Both results were from the standard IHC test.Anyways, I insisted on the fish test which came back at a 3(positive).The only explanation I was given is that is was different parts of the tumor which tested differently.My er/pr status also differed.
My oncologist has explained to me that with herceptin the odds of reoccurance between her2+ and - have actually evened out. Now maybe he is trying to ease my mind, but I sure hope it to be true.At any rate if you have any question about your her2 status I would definately ask to be tested one more time.If you are her2+ I would not want to miss the oppurtunity to take herceptin.
Best wishes
Michelle
"There are two ways to live your life. One is though nothing is a miracle. The other is as though everything is a miracle."     -Albert Einstein


gma
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Date Joined Jul 2003
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   Posted 7/26/2005 7:33 AM (GMT -7)   
I know nuttin' about this but am going to post to bump it up. MK


JUJU8872
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Date Joined Jun 2005
Total Posts : 349
   Posted 7/26/2005 9:29 AM (GMT -7)   
I really do not know why I am bothering. I visited with my rad onco today. Again, I hate these people -- all of them. It seems that I am not early stage breast cancer -- I am "intermediate" and my prognosis is not good. With all this chemo and rads, I will still have a 30% chance of recurrence and I will die. My med and rad onco do not test. According to my Rad onco, testing just brings about treatment to patients when they are still feeling good and reduces their quality of life. I really feel that I need someone who is going to fight for my life and I am not getting this here at this marvelous research hospital. I told her that I am finishing with the treatment and plan to find other docs. She wants to refer me for a second opinion to M.D. Anderson where she trained. Why bother?  She also wanted to give me anti depression meds which I am already on for hot flashes.
 
Has anyone ever experienced any of this? Are any of you in Alabama?
 
JUJU

Tavish
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Date Joined Jul 2003
Total Posts : 2272
   Posted 7/26/2005 9:52 AM (GMT -7)   
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


Skky
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Date Joined Mar 2005
Total Posts : 146
   Posted 7/26/2005 10:23 AM (GMT -7)   
Juju-
I can see why you don't care for your medical team. I second Lori's advice -I would definately be getting a second opinion.Statistics can be scary, but you are not a statistic.Noone can tell anyone of us how it will all go.It sounds to me that your chance's of cure are more than twice that of a reoccurance. I like to belive the glass is half full rather than half empty. If your onc. does not see it this way so early in the game you need a new one.I hope you are feeling better soon.
Hugs,
Michelle
"There are two ways to live your life. One is though nothing is a miracle. The other is as though everything is a miracle."     -Albert Einstein


JUJU8872
Regular Member


Date Joined Jun 2005
Total Posts : 349
   Posted 7/26/2005 10:45 AM (GMT -7)   

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.

Tavish
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Date Joined Jul 2003
Total Posts : 2272
   Posted 7/26/2005 10:51 AM (GMT -7)   
Juju...if your cancer returns locally, you will go through the same local treatment again. If your cancer comes back spread to the soft tissue beyond the breast or nodes, you can be in treatment or remission for years and years and years, long enough to find a cure. Deb is our hero...she had cancer return to the sternum over 20 years ago and she is still cancer free. Look at Lance Armstrong, he had cancer spread to his brain and lungs and he is still going strong and cancer free today. if your doctors tell you that you WILL die, then for sure, it is time for a new team. Sorry they are not more positive.....

Lori


babyseeester
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Date Joined Oct 2004
Total Posts : 826
   Posted 7/26/2005 2:15 PM (GMT -7)   
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!!!!!!!!!!
L & H,
Kathy


JUJU8872
Regular Member


Date Joined Jun 2005
Total Posts : 349
   Posted 7/26/2005 3:41 PM (GMT -7)   

My rad onco suggested a second opinion. I say, "What for?" I know that I had cancer, the tumor measures 2.9 according to their standard, that 5 nodes were positive and that after treatment I have a 30% chance of recurrence. I believe all this. My problem is that I do not have the confidence in my doctors that they will aggressively treat me if I have a recurrence.  I intend to finish rad treatment because I believe that the treatment is correct. I just disagree with the docs attitude regarding recurrence. I am going to "interview" some med onco here to see how they feel about recurrences.

Again, I do not disagree with the diagnosis, just their view of  long term treatment. For instance, since they do not do any testing for recurrence, (no blood tests, no scans) why should I even follow up? She indicated today that they could identify some problems without testing. My comeback was "So what, if it's a recurrence, I am going to die anyway." She had no reply. She thinks I am angry,(Angry, ha! I have been going through this since November 2004.) He--, yes I am angry at their stupid ideas.

I just need to get through the next six weeks without "attacking" someone at that place.

JUJU


wackygal
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Date Joined Jul 2003
Total Posts : 857
   Posted 7/26/2005 4:39 PM (GMT -7)   
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
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
"It's been worth everything I've been through,
 To do what I do"

                       To Do What I Do   -Alan Jackson, 2004


Tavish
Veteran Member


Date Joined Jul 2003
Total Posts : 2272
   Posted 7/26/2005 7:11 PM (GMT -7)   
A second opinion will not change the fact you had cancer, but it may change the current treatment...after rads, then what? Tamoxifen? Femara? Herceptin? these are still out for debate. Also, you need a positive influence, not this morbid you will die crapp that they give you. Shame on them. And many oncs do not do scans for follow up. I go to Univ of Michigan, a comprehensive cancer center, and we get scans as needed. Blood work is routine and mammograms are routine....but they believe a scan is necessary only if you have symptoms. All docs do not agree on this. Not saying which is right, but if you are not pleased with the surveillance plan, by all means, get a new one.

Good luck..
Lori


debbiR
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Date Joined Feb 2005
Total Posts : 730
   Posted 7/27/2005 7:43 AM (GMT -7)   

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

 


 


JUJU8872
Regular Member


Date Joined Jun 2005
Total Posts : 349
   Posted 7/27/2005 9:59 AM (GMT -7)   
Thanks everyone for your support. I am sorry if i ahve spelling errors here, but I am so mad i am crying. My insurance company will not pay my rad onco on a ppo basis because her name and physical address is not the same as the payee name and mailing address. They say she is out of ppo. Insurance won't call billing office and billing office won't call insuranc e. Has happened to me this whgole time I have been sick.
 
Cancedlled all appointments. Just can't take any more crap.
 
JUJU

Skky
Regular Member


Date Joined Mar 2005
Total Posts : 146
   Posted 7/27/2005 10:47 AM (GMT -7)   
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
"There are two ways to live your life. One is though nothing is a miracle. The other is as though everything is a miracle."     -Albert Einstein


debbiR
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Date Joined Feb 2005
Total Posts : 730
   Posted 7/27/2005 11:01 AM (GMT -7)   

JuJu! Big ((((((((((((((((hugs)))))))))))))))))))

I have to agree w/ Michelle. It is time that you ask someone to help you. Believe me, I know how difficult it is to admit that you need help. Just take a deep breath, pick up your telephone, and call someone and ask them to help you w/ all of this. There should be an individual in your dr's billing office that handles problems such as these. Call her/him, let the tears flow as you are talking to them, and tell them that they need to get all of this straightened out w/ your insurance company. As Michelle said, drs like to get paid and they will find a way to get this problem solved. It won't hurt to take a day or so off from rads but don't interrupt the rest of your treatments. Go on, get the treatments and let your drs office and your insurance company fight it out. The most important thing right now is YOU.

Do you have a minister or good friend that you could call and talk with? I am sure that they would be more than glad to help you and many times it is really, really nice to just have someone put an arm around your shoulder and tell you to cry, that they are there and will help you. Give it a try.

Hugs...Deb

PS...Don't worry about the misspellings. We all do that. Also, don't worry about crying when you are talking to a dr or insurance company. Sometimes it actually helps your cause.


 


gma
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Date Joined Jul 2003
Total Posts : 2921
   Posted 7/28/2005 7:33 AM (GMT -7)   
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


JUJU8872
Regular Member


Date Joined Jun 2005
Total Posts : 349
   Posted 7/28/2005 6:36 PM (GMT -7)   
Feeling better for the first time in 2 days. Just walked outside after the rain. It was dark, cool, and I did not have on a wig, makeup, bra or prosthesis. It really felt like I could be myself and not hide behind all the "gook". How refreshing!

JUJU

BAK
Regular Member


Date Joined Jul 2005
Total Posts : 44
   Posted 7/28/2005 7:35 PM (GMT -7)   
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

Brnadebt
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Date Joined Jul 2005
Total Posts : 688
   Posted 7/29/2005 1:07 PM (GMT -7)   
Juju
I just read all of your posts on your medical team.........they should all be shot! I cant believe they were all so cruel and mean about this. I wish we were closer so that I could get my Dr to see you. Se is the best and so positive. I know mine will not be an easy road but no one will ever tell me Im going to die!!!!! They should try to be more positive after all lots of people have had the 3-6-9 month or 1 year told to them and they are still here. A positive attitude helps alot. Smile...it makes people wonder what you have been up to!
Lots of hugs
Bernadette
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