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
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.
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: 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! 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.
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.