??Her2/neu

jake10
jake10 Member Posts: 202
edited March 2014 in Breast Cancer #1
I never heard of this. Should I assume mine was negative because nobody ever mentioned it? I had a 0.6cm, ductal tumor with negative nodes. I had a mastectomy anyway because I was afraid not to. My tumor was estr and prog reactive but no one ever mentioned Her2/neu. My diagnosis was in November 2002?????????

Comments

  • hummingbyrd
    hummingbyrd Member Posts: 950 Member
    #2
    Good rule of thumb...never assume anything! I'd ask for a pathology report, be a good idea to have for your records anyway. I've found its best to keep a medical record chart on yourself. Things like x-ray results, mammograms, lab work, operation reports, pathology reports...that way if you ever go see another MD you already have the info you need on hand! It's a lot easier to get copies as you go than to have to track them down later! God bless. hummingbyrd
  • miraclemom
    miraclemom Member Posts: 41
    #3
    hi-was diagnosised in jan 2002.Had a ductal tumor also with negative nodes then 6 months of chemo because mines an aggresive cancer but my breast cancer is homone fed also just like yours and so when i saw your posting I had to get in touch with you because ive never heard of Her2/neu.Would like to know what it means-there is so much out there about this whole cancer stuff and trying to find out all I can and seems like everyday you hear about something elsa thats goes along with the cancer we have.Thank you for any info you or anyone elsa can provide.Good luck!
  • rainyday
    rainyday Member Posts: 49
    #4
    Hi, I started researching it last week after my oncologist strongly recommended a session of AC which I was not expecting. HER2/neu+ (an oncogene)is an indicator of a more potentially aggressive type of cancer although it is definately NOT clear whether it needs other factors to be present, postive, or negative to change the progression of the cancer. It is usually associated with ER/PR neg tumors which don't react to tamoxafen (mine is ER/PR+) and HER2 does not resond well to many of the standard breast cancer drugs. The combination of Invasive, HER2+, and ER/PR- could suggest a poorer prognosis simply becasue of the difficulty of treating this combo. That said, HER2/neu+ apparently responds very well to Adriamycin and Herceptin has proven to be very helpful for later stage cancers and is being studied as adjuvant therapy for early stage. The HER2 test has been available for a few years and many hospitals now do it as a standard (mine did). The bottom line is we really don't know that having an HER+ tumor by itself means a poorer prognoisis and we have treatments available for it. What is does mean is that if you are HER2+ and your tumor was over 1 cm, your oncologist if far more likely to suggest a course of chemo even if your nodes are negative just to eradicate any floaters. If you want more info just go to this website and search or go on the web and search for HER/neu there is a staggering amount of info out there. Shelley
  • miraclemom
    miraclemom Member Posts: 41
    #5
    rainyday said:

    Hi, I started researching it last week after my oncologist strongly recommended a session of AC which I was not expecting. HER2/neu+ (an oncogene)is an indicator of a more potentially aggressive type of cancer although it is definately NOT clear whether it needs other factors to be present, postive, or negative to change the progression of the cancer. It is usually associated with ER/PR neg tumors which don't react to tamoxafen (mine is ER/PR+) and HER2 does not resond well to many of the standard breast cancer drugs. The combination of Invasive, HER2+, and ER/PR- could suggest a poorer prognosis simply becasue of the difficulty of treating this combo. That said, HER2/neu+ apparently responds very well to Adriamycin and Herceptin has proven to be very helpful for later stage cancers and is being studied as adjuvant therapy for early stage. The HER2 test has been available for a few years and many hospitals now do it as a standard (mine did). The bottom line is we really don't know that having an HER+ tumor by itself means a poorer prognoisis and we have treatments available for it. What is does mean is that if you are HER2+ and your tumor was over 1 cm, your oncologist if far more likely to suggest a course of chemo even if your nodes are negative just to eradicate any floaters. If you want more info just go to this website and search or go on the web and search for HER/neu there is a staggering amount of info out there. Shelley

    hi rainyday-thank you for the information,my doctor has never mentioned anything about this her2 test and I will be asking him about it and how it affects me.Thanks again and I will also check out the web site you told about.If you do have anymore info please pass it along.
  • hummingbyrd
    hummingbyrd Member Posts: 950 Member
    #6
    miraclemom said:

    hi rainyday-thank you for the information,my doctor has never mentioned anything about this her2 test and I will be asking him about it and how it affects me.Thanks again and I will also check out the web site you told about.If you do have anymore info please pass it along.

    Just wanted to add, I was diagnosed June of 2000, ER/PR+ and HER2neu w/ 13 out of 27+ lymph nodes. Had lumpectomy, chemo(AC and Taxol), rad....since had met to other breast and 2 bone mets. Currently on Aromasin and Herceptin and Zometa. This is considered a more aggressive tumor, but it's not a death sentence, as some might have you believe. I have to say I am here by the grace of God! I had the appropriate treatment, I stayed informed of my condition, just like you ladies are doing, and I kept my faith in the Lord. Keep up the positive attitude, a good sense of humor and live each day as if its your last, cancer or not! Giving all the honor and glory to God, Your's in Christ. hummingbyrd
  • rainyday
    rainyday Member Posts: 49
    #7
    hummingbyrd said:

    Just wanted to add, I was diagnosed June of 2000, ER/PR+ and HER2neu w/ 13 out of 27+ lymph nodes. Had lumpectomy, chemo(AC and Taxol), rad....since had met to other breast and 2 bone mets. Currently on Aromasin and Herceptin and Zometa. This is considered a more aggressive tumor, but it's not a death sentence, as some might have you believe. I have to say I am here by the grace of God! I had the appropriate treatment, I stayed informed of my condition, just like you ladies are doing, and I kept my faith in the Lord. Keep up the positive attitude, a good sense of humor and live each day as if its your last, cancer or not! Giving all the honor and glory to God, Your's in Christ. hummingbyrd

    Hummingbyrd, I have been reading your posts since I was diagnosed a few weeks ago. You are both a source of strength and inspiration. I had a 1.5 cm, 16 negative nodes, ER/PR + and HER2 at 2+. I have had a lumpectomy and as soon as the infection disappears will start AC (12 weeks x 4), followed by radiation and then Tamoxafin for five years. I am scared of the AC but am willing to do whatever I can. The chemo also reduces the chance of recurrence and I will take anything I can get. Hugs, hope and laughter. Rainyday
  • hummingbyrd
    hummingbyrd Member Posts: 950 Member
    #8
    rainyday said:

    Hummingbyrd, I have been reading your posts since I was diagnosed a few weeks ago. You are both a source of strength and inspiration. I had a 1.5 cm, 16 negative nodes, ER/PR + and HER2 at 2+. I have had a lumpectomy and as soon as the infection disappears will start AC (12 weeks x 4), followed by radiation and then Tamoxafin for five years. I am scared of the AC but am willing to do whatever I can. The chemo also reduces the chance of recurrence and I will take anything I can get. Hugs, hope and laughter. Rainyday

    Congratulations on the negative nodes! That is great news. I won't kid you girl, the AC is a rough one to ride, but you can do it. Just keep your focus on where you are going. Everytime you take a treatment that's just one less left to take! Hey, and you know what you get after a rainyday?.......a rainbow!! God bless. hummb

    P.S.
    As for the source of strength and inspiration, thank you, but as always its not me, its my glorious God. (((HUGS)))) hummer
  • chemoqueen1
    chemoqueen1 Member Posts: 50
    #9
    Hi, I am also Her2+ and ER/PR +. My doc told me that even though I was node negative and no sign of spread from scans, becuase of the Her2 status chemo was recommended to reduce my risk of re-occurance. I am currently in a study that is tesing standard chemo therapies with the addition of herceptine to see if it prevents a reoccurance or spread. There is very positive results with Herceptine in patients who have already had spread. I am on Taxotere, Cyboplatin and Hercepting. Hercepinte every week and all 3 every 3rd week. Ask you Doc about the Her2. The sponser of the study is the US Oncology group.
  • hummingbyrd
    hummingbyrd Member Posts: 950 Member
    #10
    chemoqueen1 said:

    Hi, I am also Her2+ and ER/PR +. My doc told me that even though I was node negative and no sign of spread from scans, becuase of the Her2 status chemo was recommended to reduce my risk of re-occurance. I am currently in a study that is tesing standard chemo therapies with the addition of herceptine to see if it prevents a reoccurance or spread. There is very positive results with Herceptine in patients who have already had spread. I am on Taxotere, Cyboplatin and Hercepting. Hercepinte every week and all 3 every 3rd week. Ask you Doc about the Her2. The sponser of the study is the US Oncology group.

    Good for you! I asked to be put on Herceptin as a prophylactic treatment to prevent the spread of my tumor since it was so mod to strong of an expression of HER2, but nooooooo LOL They said, 'its not indicated for that'. Talk about letting the horse out and then shutting the barn door. I am so glad they are doing studies using Herceptin as a standard treatment BEFORE you get bone mets! Good for you, chemoqueen1, having the spirit to participate in a trial study. Thank you for the information. God bless. hummer
  • rainyday
    rainyday Member Posts: 49
    #11
    hummingbyrd said:

    Good for you! I asked to be put on Herceptin as a prophylactic treatment to prevent the spread of my tumor since it was so mod to strong of an expression of HER2, but nooooooo LOL They said, 'its not indicated for that'. Talk about letting the horse out and then shutting the barn door. I am so glad they are doing studies using Herceptin as a standard treatment BEFORE you get bone mets! Good for you, chemoqueen1, having the spirit to participate in a trial study. Thank you for the information. God bless. hummer

    Chemoqueen - I saw two trials on the NCI website using a variety of chemo and herceptin but both are on node positive, postmenopausal women (please correct me if I am wrong). I am node negative, pre-menopausal (haha - at least for a few more weeks) and a 2+ HER2/neu. I am looking into getting the FISH test done because the pathology lab that did my tests noted that in their experience in the lab, "only a 3+ overexpression correlates with HER-2/neu gene amplification by FISH (which is supposedly much more accurate) but the standard for reporting in the US HER2 tests does call a 2+ overexpressed. I will look at the US Oncology group website? I assume there is one. sunshine an hugs.
  • rainyday
    rainyday Member Posts: 49
    #12
    hummingbyrd said:

    Good for you! I asked to be put on Herceptin as a prophylactic treatment to prevent the spread of my tumor since it was so mod to strong of an expression of HER2, but nooooooo LOL They said, 'its not indicated for that'. Talk about letting the horse out and then shutting the barn door. I am so glad they are doing studies using Herceptin as a standard treatment BEFORE you get bone mets! Good for you, chemoqueen1, having the spirit to participate in a trial study. Thank you for the information. God bless. hummer

    hummingbyrd, herceptin is a monoclonal antibody to the hER2, seems like that would make sense for you? Hmmm.... maybe you need to offer to participate in the trials. I know they are looking for more people. I am learning already that I have to fight for every little thing from arguing that the scales are way off (I mean as much as 16 pounds! really - I couldn't stop laughing, I just spent the past year losing 30 pounds and they tell I put half of it back on in 4 weeks!), to wanting the FISH test, to refusing to see which ever doctor is on rotation etc etc. I just have to get used to this new way of life but is it time consuming. Love and laughter.

    PS Hummer I am hoping that some of your faith rubs off on me! I am non religious but do believe that things happen for a reason. I found this lump a few weeks ago because I pulled a muscle under my arm and lo and behold while I was rubbing my sore muscles looked what popped up. I have been doing breast exams for the past 10 years so has the my doctor with my annual check up.
  • chemoqueen1
    chemoqueen1 Member Posts: 50
    #13
    rainyday said:

    Chemoqueen - I saw two trials on the NCI website using a variety of chemo and herceptin but both are on node positive, postmenopausal women (please correct me if I am wrong). I am node negative, pre-menopausal (haha - at least for a few more weeks) and a 2+ HER2/neu. I am looking into getting the FISH test done because the pathology lab that did my tests noted that in their experience in the lab, "only a 3+ overexpression correlates with HER-2/neu gene amplification by FISH (which is supposedly much more accurate) but the standard for reporting in the US HER2 tests does call a 2+ overexpressed. I will look at the US Oncology group website? I assume there is one. sunshine an hugs.

    Rainyday - I am pre-menopause also. I have the trial papers at home and would be happy to give you more information. I will bring it in tomorrow and post again. By the way what area do you live in, I could ask my doc if he knows of a oncologist in your area with more experience using Herceptine.
  • rainyday
    rainyday Member Posts: 49
    #14
    chemoqueen1 said:

    Rainyday - I am pre-menopause also. I have the trial papers at home and would be happy to give you more information. I will bring it in tomorrow and post again. By the way what area do you live in, I could ask my doc if he knows of a oncologist in your area with more experience using Herceptine.

    Thanks chemoqueen, I am in NH. I will be meeting with the oncolgist again on Monday. They want to start chemo early next week as well. Yippee!
  • hummingbyrd
    hummingbyrd Member Posts: 950 Member
    #15
    rainyday said:

    hummingbyrd, herceptin is a monoclonal antibody to the hER2, seems like that would make sense for you? Hmmm.... maybe you need to offer to participate in the trials. I know they are looking for more people. I am learning already that I have to fight for every little thing from arguing that the scales are way off (I mean as much as 16 pounds! really - I couldn't stop laughing, I just spent the past year losing 30 pounds and they tell I put half of it back on in 4 weeks!), to wanting the FISH test, to refusing to see which ever doctor is on rotation etc etc. I just have to get used to this new way of life but is it time consuming. Love and laughter.

    PS Hummer I am hoping that some of your faith rubs off on me! I am non religious but do believe that things happen for a reason. I found this lump a few weeks ago because I pulled a muscle under my arm and lo and behold while I was rubbing my sore muscles looked what popped up. I have been doing breast exams for the past 10 years so has the my doctor with my annual check up.

    Well glory be to God rainyday! If that pulled muscle co-incident (God incident) doesn't make you believe in the power of Our Maker it ought to make you at least a little bit curious, eh?
    May I suggest you visit and thoroughly read my website Conquering Cancer Through Christ. The first page was inspired by God, and if you knew how computer illiterate I am you could appreciate the miracle of me building a website. Makes me laugh just to think about it.
    www.urcctc.com
    Oh yes, I am on Herceptin, have been since September 2001, its just they had to diagnose a bone met before they would treat me with it. My point being, use it before you get a met! Maybe that's what they will discover with these trials.
    God bless. hummb
    Sending up prayers that you DO find the faith you need and that you come to know Christ as your personal Savior. If so you will know peace like you've never known before. Lots of luv, hummer.
  • jake10
    jake10 Member Posts: 202
    #16
    hummingbyrd said:

    Well glory be to God rainyday! If that pulled muscle co-incident (God incident) doesn't make you believe in the power of Our Maker it ought to make you at least a little bit curious, eh?
    May I suggest you visit and thoroughly read my website Conquering Cancer Through Christ. The first page was inspired by God, and if you knew how computer illiterate I am you could appreciate the miracle of me building a website. Makes me laugh just to think about it.
    www.urcctc.com
    Oh yes, I am on Herceptin, have been since September 2001, its just they had to diagnose a bone met before they would treat me with it. My point being, use it before you get a met! Maybe that's what they will discover with these trials.
    God bless. hummb
    Sending up prayers that you DO find the faith you need and that you come to know Christ as your personal Savior. If so you will know peace like you've never known before. Lots of luv, hummer.

    I haven't been back to the site since I posted the question. Thanks for all the information. I had arranged for my hospital and surgical records to be sent to my PCP just last week so I will check out the path report myself as soon as he gets the records. Thanks.
  • rainyday
    rainyday Member Posts: 49
    #17
    hummingbyrd said:

    Well glory be to God rainyday! If that pulled muscle co-incident (God incident) doesn't make you believe in the power of Our Maker it ought to make you at least a little bit curious, eh?
    May I suggest you visit and thoroughly read my website Conquering Cancer Through Christ. The first page was inspired by God, and if you knew how computer illiterate I am you could appreciate the miracle of me building a website. Makes me laugh just to think about it.
    www.urcctc.com
    Oh yes, I am on Herceptin, have been since September 2001, its just they had to diagnose a bone met before they would treat me with it. My point being, use it before you get a met! Maybe that's what they will discover with these trials.
    God bless. hummb
    Sending up prayers that you DO find the faith you need and that you come to know Christ as your personal Savior. If so you will know peace like you've never known before. Lots of luv, hummer.

    hummer - I will have to check out the website after that comment about you being computer illiterate! LOL Speaking of which "Why did the computer programmer get stuck in the shower?, becasue the shampoo bottle said lather, rinse repeat".

    We are all following our own different paths to find peace of mind and being receptive to other peoples faiths and ideas is just part of the journey. I confess that there hasn't been too much peace of mind for the past six weeks. What a roller coaster! It is only listening to all of these posts, seeing my good friend getting through chemo that convinces me that I too will get through it! Love and laughter
  • rainyday
    rainyday Member Posts: 49
    #18
    chemoqueen1 said:

    Rainyday - I am pre-menopause also. I have the trial papers at home and would be happy to give you more information. I will bring it in tomorrow and post again. By the way what area do you live in, I could ask my doc if he knows of a oncologist in your area with more experience using Herceptine.

    Chemoqueen - Sorry I had a blonde day today (sorry to any sensitive blondes out there, I am blonde), I somehow deleted the e-mail with the info on the trial. It was very first e-mail from this site and I guess I didn't know what to do with it and I can't claim to being computer illiterate like hummer. Could you please send it again? Sorry! Hugs
  • chemoqueen1
    chemoqueen1 Member Posts: 50
    #19
    rainyday said:

    Chemoqueen - Sorry I had a blonde day today (sorry to any sensitive blondes out there, I am blonde), I somehow deleted the e-mail with the info on the trial. It was very first e-mail from this site and I guess I didn't know what to do with it and I can't claim to being computer illiterate like hummer. Could you please send it again? Sorry! Hugs

    I have e-mailed the information to you. Let me know if you need anymore help.

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