breast cancer her2

hi i'm new. i had a double masc. about one year ago because I had two lumpectomies and they offered me radiation thereafter. I refused the radiation and asked for a mastectomy because i felt i should "rid" myself of the breast tissue. they found a tumor 1.7 in pathology after that surgery and thereafter told me i had her2 and offered me chemo. i dont want chemo or drugs so i just see an oncologist every few months. i had a scan and nothing and an ex ray and nothing again. i cannot see why i need any more except if anyone has any similar circumstances i would like to hear this. thank you all.

Comments

  • Jean 0609
    Jean 0609 Member Posts: 2,462
    Welcome,
    Sorry you are here, but glad that you found us. This is a great place to read, cry, scream, vent, share something good, ...whatever you feel like. I had chemo so I don't have any advise, but I'm sure someone here will. Hang in there. Hugs, Jean
  • Bella Luna
    Bella Luna Member Posts: 1,578 Member
    Her2 and Herceptin
    Denny... I am sorry cancer has invaded your life. It can be a wild roller coaster ride, but you are not alone. We know what you are going through and you came to a very good place for support and information.

    How scary to hear the two lumpectomies you had didn't get all the tumors in your breast. If you hadn't of had the mastectomy... sure makes you wonder. Your gut instinct to go with a mastectomy was right on.

    Just so that you know, I was HER2 positive and took Herceptin for a year. Infusions were every 3 weeks. I'll be honest, I was floored when I heard I'd have to have infusions for a whole year, but I got through it. I had support and, you know, the year went by quickly. I also made some wonderful friends as a result of this situation. I am not trying to downsize the situation as this is a very serious matter.

    From what I understand, Her2 is a very aggressive form of breast cancer. Herceptin is a miracle drug that was developed for this type of cancer. I would highly suggest you talk with your oncologist about your situation.

    Best of luck with your journey.
    BL
  • Marsha Mulvey
    Marsha Mulvey Member Posts: 597 Member

    Her2 and Herceptin
    Denny... I am sorry cancer has invaded your life. It can be a wild roller coaster ride, but you are not alone. We know what you are going through and you came to a very good place for support and information.

    How scary to hear the two lumpectomies you had didn't get all the tumors in your breast. If you hadn't of had the mastectomy... sure makes you wonder. Your gut instinct to go with a mastectomy was right on.

    Just so that you know, I was HER2 positive and took Herceptin for a year. Infusions were every 3 weeks. I'll be honest, I was floored when I heard I'd have to have infusions for a whole year, but I got through it. I had support and, you know, the year went by quickly. I also made some wonderful friends as a result of this situation. I am not trying to downsize the situation as this is a very serious matter.

    From what I understand, Her2 is a very aggressive form of breast cancer. Herceptin is a miracle drug that was developed for this type of cancer. I would highly suggest you talk with your oncologist about your situation.

    Best of luck with your journey.
    BL

    Denny
    Hello. I'm having a difficult time trying to word my reply, so I'll just tell you what I know about HER2+ breast cancer. This is meant to inform, not to scare. It is a very aggressive type of cancer and 60% more likely to recur than other types of cancer. The absence of breast tissue does not mean that it cannot recur, it can return in other organs or the bones - and it's still breast cancer. Herceptin is not a traditional chemo drug, rather it is a "targeted therapy" specifically used only for those with HER2+ cancer. They give it in hopes that it will lessen the likelyhood of a recurrnece. It is a relatively new drug but studies are looking good. The really good part of Herceptin is that while improving your odds, it is usually very tolerable. Please learn all you can about this specific cancer and talk to and ask questions of your oncologist. Best wishes in making your decision.
    Marsha
  • tommaseena
    tommaseena Member Posts: 1,769

    Her2 and Herceptin
    Denny... I am sorry cancer has invaded your life. It can be a wild roller coaster ride, but you are not alone. We know what you are going through and you came to a very good place for support and information.

    How scary to hear the two lumpectomies you had didn't get all the tumors in your breast. If you hadn't of had the mastectomy... sure makes you wonder. Your gut instinct to go with a mastectomy was right on.

    Just so that you know, I was HER2 positive and took Herceptin for a year. Infusions were every 3 weeks. I'll be honest, I was floored when I heard I'd have to have infusions for a whole year, but I got through it. I had support and, you know, the year went by quickly. I also made some wonderful friends as a result of this situation. I am not trying to downsize the situation as this is a very serious matter.

    From what I understand, Her2 is a very aggressive form of breast cancer. Herceptin is a miracle drug that was developed for this type of cancer. I would highly suggest you talk with your oncologist about your situation.

    Best of luck with your journey.
    BL

    Denny
    Her2 is a very aggressive breast cancer and Herceptin is a miracle drug that targets the Her2 gene so it will not spread to other parts.

    I had chemo(for 4 months) and the Herceptin(1 yr) and like Bella I also highly suggest you talk with your oncologist if your path report came out to state that you were Her2 positive.

    Margo
  • DebbyM
    DebbyM Member Posts: 3,289 Member

    Her2 and Herceptin
    Denny... I am sorry cancer has invaded your life. It can be a wild roller coaster ride, but you are not alone. We know what you are going through and you came to a very good place for support and information.

    How scary to hear the two lumpectomies you had didn't get all the tumors in your breast. If you hadn't of had the mastectomy... sure makes you wonder. Your gut instinct to go with a mastectomy was right on.

    Just so that you know, I was HER2 positive and took Herceptin for a year. Infusions were every 3 weeks. I'll be honest, I was floored when I heard I'd have to have infusions for a whole year, but I got through it. I had support and, you know, the year went by quickly. I also made some wonderful friends as a result of this situation. I am not trying to downsize the situation as this is a very serious matter.

    From what I understand, Her2 is a very aggressive form of breast cancer. Herceptin is a miracle drug that was developed for this type of cancer. I would highly suggest you talk with your oncologist about your situation.

    Best of luck with your journey.
    BL

    Welcoming you to this site
    Welcoming you to this site full of very supportive pink sisters! And, wishing you good luck!
  • aysemari
    aysemari Member Posts: 1,596 Member
    Hi there
    I was in a similar situation.

    IDC, stage 2,Her+. Had 2 lumpectomies, didn't get clear margins
    the first time around.

    And like you I opted for a mastectomy instead of radiation. I did
    do the chemo however. I did Taxotere and carbo for 5 months and
    Herceptin for a year.

    HER+ is an aggressive cancer and Herceptin has been proven to
    be quiet effective. I didn't want to think back and have regrets. So
    I chose to do chemo.

    It's a very personal choice, the course of treatment. Do what gives
    you peace of mind, I would say.

    Hugs,
    Ayse
  • Ritzy
    Ritzy Member Posts: 4,381 Member
    Jean 0609 said:

    Welcome,
    Sorry you are here, but glad that you found us. This is a great place to read, cry, scream, vent, share something good, ...whatever you feel like. I had chemo so I don't have any advise, but I'm sure someone here will. Hang in there. Hugs, Jean

    Our oncologist's recommend
    Our oncologist's recommend what treatments they feel is best for us. We are all individual's and therefore have different surgery's and treatments. I wish you good luck and only you can decide what treatment is best for you.


    Sue :)
  • tgf
    tgf Member Posts: 950 Member
    aysemari said:

    Hi there
    I was in a similar situation.

    IDC, stage 2,Her+. Had 2 lumpectomies, didn't get clear margins
    the first time around.

    And like you I opted for a mastectomy instead of radiation. I did
    do the chemo however. I did Taxotere and carbo for 5 months and
    Herceptin for a year.

    HER+ is an aggressive cancer and Herceptin has been proven to
    be quiet effective. I didn't want to think back and have regrets. So
    I chose to do chemo.

    It's a very personal choice, the course of treatment. Do what gives
    you peace of mind, I would say.

    Hugs,
    Ayse

    Herceptin
    I too am Her2+. When I started on my cancer journey I was talking to a friend I knew had also had treatment. She told me she was in the research study for herceptin ... and before the study was completed they were getting such amazing results from it that they started giving everyone herceptin. It was that effective!

    So... when my oncologist told me I needed herceptin ... I didn't give it a second thought. I never had any side effects ... and as someone else said ... the infusion center where I went was terrific ... and the staff was wonderful.

    Maybe you should talk to your oncologist again. One more suggestion ... if you do change your mind and take herceptin ... you might also consider have a port installed. I almost said "NO!!!" to chemo ... because I'm such a chicken with needles ... but then the oncologist told me about the port. It makes it so easy. No poking an prodding and looking for veins in your arms. One tiny little prick in the exact spot every time ... and that's it. I can't believe I did it ... but I did.

    good luck with whatever you decide.

    hugs.
    teena
  • suecbeach
    suecbeach Member Posts: 9
    HER2

    I'm new too as was diagonesed just about 2 weeks ago and had my mastectomy on the 7th and the port went in two days ago.   I start the Herceptin infusion this Wed. and my body is telling me that I have done too much to it in a short time.   At first I thought I was home free when the lymph nodes were clear but the path. report came back with the HER2 finding and the doctors were at tad stunned to find that in an 81 year old woman.    My oncologist tells me that he won't do chemo due to my age-- but that Hepceptin is having good results.   It is truly overwhelming to me right now and any guidance will be welcomed.   My husband is fighting cancer too-- what are the odds that both of us would be facing this challenge at the same time.   Right now I am SO tired --even the small exertion saps my energy and have litle or no appetite so am consuming Ensure by the case.  Thank you in advance for any help.   

  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member
    Cancer is very, very sneaky. 

    Cancer is very, very sneaky.  My opinion is that, if your oncologist encouraged chemo (at least herceptin), and you refuse therapy, you will not "rid" yourself of cancer. 

    I give this opinion as one who had cancer recur after an 18 year remission.  Chemo is not as bad as 231 cancerous liver lesions, bone and lung breast metastases.  I am now on herceptin/perjeta for life (or until it quits working).  Finished taxotere in August.

    I won't lie and say the side effects aren't tough, but cancer is a lot tougher.  And my cancer is her2neu positive also - a cancer that tends to be fairly treatable with treatment, but very aggressive without.

    Everyone has different goals and plans for themselves and no one can tell you what to do.  I wish you the very best and pray you don't face my situation in the future.  (((Hugs))).

    http://www.cancer.org/cancer/breastcancer/detailedguide/breast-cancer-treating-by-stage

  • ladybug22
    ladybug22 Member Posts: 646
    Her2 and Herceptin

    i was her 2 had mast. i took chemo reds and was on Herceptin for a year  this was back in 0 7  . I had I. B. C.  my onc told me that is what i had  to do if i wanted to live .  we are all similar and we are all difference  hugs  and love  to you  there is a move about Herceptin cant remenber the name of movie just remenber it was a great movie  i was taking herceptin  at the time thr drug is may be 15 to 20 years old.

  • 2ndxyvonne
    2ndxyvonne Member Posts: 41
    her2

    In 2008, I had my a mastectomy, that cancer, IDC stage 1B, was Her2 neg.  Anyway, Oct 2012 I had a breast cancer recurrence in the chest wall where i had had the mx. IDC Stage IV, HER2 positive. I had 9 chemo treatments, every 3rd week they also used perjeta and herceptin. Had pet scan a few weeks ago, that came back good so I now take arimidex and still go in every three weeks for the herceptin and perjeta.  Just because you have a mx does not mean the cancer can't or won't come back.  Oh and mine is estrogen positive also.  I follow the advice of my onco, she is the expert in this fight and she gives me the ammo I need to stand a fighting chance in this war.  But, you must do what you are comfortable with.  There's a lot of good advice on this site too.  Good luck to you.

  • suecbeach
    suecbeach Member Posts: 9

    her2

    In 2008, I had my a mastectomy, that cancer, IDC stage 1B, was Her2 neg.  Anyway, Oct 2012 I had a breast cancer recurrence in the chest wall where i had had the mx. IDC Stage IV, HER2 positive. I had 9 chemo treatments, every 3rd week they also used perjeta and herceptin. Had pet scan a few weeks ago, that came back good so I now take arimidex and still go in every three weeks for the herceptin and perjeta.  Just because you have a mx does not mean the cancer can't or won't come back.  Oh and mine is estrogen positive also.  I follow the advice of my onco, she is the expert in this fight and she gives me the ammo I need to stand a fighting chance in this war.  But, you must do what you are comfortable with.  There's a lot of good advice on this site too.  Good luck to you.

    Had my first infustion

    Had my first infustion today-- herceptin and taxatere.   What sort of side effects have any of you experienced??   Would like to know the possiblilites which of course the nurses walked me through ALL of them today which sounded awful---but would like to know from "real people" what they actually had.    Thanks in advance.  

  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    suecbeach said:

    Had my first infustion

    Had my first infustion today-- herceptin and taxatere.   What sort of side effects have any of you experienced??   Would like to know the possiblilites which of course the nurses walked me through ALL of them today which sounded awful---but would like to know from "real people" what they actually had.    Thanks in advance.  

    Am I understanding your post?

    Did you make this decision to forego Herceptin and chemotherapy a year ago? Did you have 2 lumps removed first and then a third 1.7 cm tumor found on pathology after mastectomy?   And now you want to stop going to follow-up visits?  

    As others have mentioned, HER-2+ breast cancer is pretty aggressive which is why chemotherapy is typically done as well as targeted therapy (Herceptin).  Just because your local area is still clear doesn't mean the cancer won't recur there or elsewhere in your body.   Of course, scans and follow-up visits will not prevent that, but they can hopefully catch recurrences when small and more likely to respond to treatment.  I had early stage ER+ cancer (HER-2 negative) and I sometimes wonder if I was overtreated with chemotherapy, but genomic testing showed a high recurrence score so chemo was recommended and I agreed.  Even with chemotherapy, I suppose it could come back, but I feel very safe now.  That was 3 1/2 yers ago.  I have permanent hair loss from Taxotere, but I still would have agreed to the treatment - even if I knew that. 

    All that being said, I have a very good friend who was HER-2+ and refused chemotherapy and was not offered Herceptin at the time of diagnosis because it wasn't offered as first line treatment then.  That was 8 years ago.  She had a lumpectomy and radiation.  No chemo, no Herceptin and she's fine.  And she feels very very lucky.  She was also ER+ and took Arimidex for 7 years.

    No matter what our cancer type, we all have a 0 or 100% chance of it coming back - it either will or it won't.  We don't know whether we're in the group of women who never see a recurrence or the group who will and this is why we try to "mop up" anything that might have avoided the surgery by radiation, chemotherapy or targeted therapy.    It always remains our right to make our own treatment decisions, along with the risks that come with that decision.  My decision to have radiation and chemotherapy had risks, your decision to refuse adjuvunct therapy also has risks.

    Good luck. Our lives change significantly once we receive a cancer diagnosis.   

    Suzanne