Confused...decisions......confused

terri805
terri805 Member Posts: 122
edited March 2014 in Breast Cancer #1
I met with the oncologist and radiologist today. I went there thinking I knew just what I was going to be doing but didn't know the details. Well, the oncoligist asked me if I wanted to take herceptin (sp) for a trial study. Two doses of it and then radiation,then either tamoxifin or arimidex. The radiologist said that some people just have a lumpectomy with DCIS and no further treatment.Both dr.s said that herceptin has been know to cause heart problems. They asked me if I wanted to take it and I said"I don't know" "what does most people do?" I am really confused now because I didn't think radiation was really a choice with DCIS and I never knew herceptin was given for it either. I am feeling really dumb and unsure of what to do now. I want to do what is best but I don't know what that is right now. The dr said "most" people have bone and joint aches with arimidex.Does that mean that I will be in pain for 5 yrs while taking this medicine? The herceptin is not a for sure thing because the dr said if I was her - I would not be a candidate for it and that it would be a 50/50 chance of getting chosen for the trial. Does anyone have any thoughts about this? I need to make a decision on what to do and I right now I don't know. I think I am just rambling on out of confusion.

Comments

  • Megan M
    Megan M Member Posts: 3,000
    You must be HER2 positive if
    You must be HER2 positive if they want you to take Herceptin. I am ER and PR positive, but, HER2 negative. There are a lot of women on here that take it. I think they take it for some time. I found this info on HealthCentral.com

    Herceptin is an antibody that blocks the HER2 protein from attaching itself to cancer cells, preventing them from growing. Herceptin works like tamoxifen, in a way: where tamoxifen attaches itself to a cell’s estrogen receptors, thus depriving the cell of the estrogen it needs to grow, Herceptin attaches itself to the cell’s protein receptors, effectively blocking the “grow” message. Herceptin can also signal your body’s immune system to destroy the cell to which it’s attached itself, so it carries a double punch. Like tamoxifen and aromatase inhibitors, Herceptin works to prevent recurrence in women whose HER2-positive cancer hasn’t metatastized.

    Unlike tamoxifen, or the various aromatase inhibitors (Arimidex, Aromasin, Femara), Herceptin (trastuzumab) is NOT a hormone therapy drug. Instead, it’s called a targeted therapy (or immune targeted therapy). Targeted therapies are manufactured antibodies that “target” specific properties of cancer cells: their production of protein, their use of enzymes, or their ability to form new blood vessels to support growth. They leave healthy cells alone, which is a plus.

    In HER2-positive breast cancer, there’s an excess of HER2 genes in the chromosomes of some of your cells. These genes tell the cells to grow extra protein receptors on their surface. With these extra receptors, the cells keep getting signals to grow, rather than to rest or repair. They grow much faster than the cells around them; this wild, uncontrolled growth turns them into cancer cells. Twenty-five percent of all breast cancers are HER2-positive.


    I don't know if this helps you or not. I am sure the women on Herceptin will explain it better than I can. I trust my doctors and trust that they have my best interest in mind. But, this is your treatment, you make the final decision Terri.

    Megan
  • terri805
    terri805 Member Posts: 122
    Megan M said:

    You must be HER2 positive if
    You must be HER2 positive if they want you to take Herceptin. I am ER and PR positive, but, HER2 negative. There are a lot of women on here that take it. I think they take it for some time. I found this info on HealthCentral.com

    Herceptin is an antibody that blocks the HER2 protein from attaching itself to cancer cells, preventing them from growing. Herceptin works like tamoxifen, in a way: where tamoxifen attaches itself to a cell’s estrogen receptors, thus depriving the cell of the estrogen it needs to grow, Herceptin attaches itself to the cell’s protein receptors, effectively blocking the “grow” message. Herceptin can also signal your body’s immune system to destroy the cell to which it’s attached itself, so it carries a double punch. Like tamoxifen and aromatase inhibitors, Herceptin works to prevent recurrence in women whose HER2-positive cancer hasn’t metatastized.

    Unlike tamoxifen, or the various aromatase inhibitors (Arimidex, Aromasin, Femara), Herceptin (trastuzumab) is NOT a hormone therapy drug. Instead, it’s called a targeted therapy (or immune targeted therapy). Targeted therapies are manufactured antibodies that “target” specific properties of cancer cells: their production of protein, their use of enzymes, or their ability to form new blood vessels to support growth. They leave healthy cells alone, which is a plus.

    In HER2-positive breast cancer, there’s an excess of HER2 genes in the chromosomes of some of your cells. These genes tell the cells to grow extra protein receptors on their surface. With these extra receptors, the cells keep getting signals to grow, rather than to rest or repair. They grow much faster than the cells around them; this wild, uncontrolled growth turns them into cancer cells. Twenty-five percent of all breast cancers are HER2-positive.


    I don't know if this helps you or not. I am sure the women on Herceptin will explain it better than I can. I trust my doctors and trust that they have my best interest in mind. But, this is your treatment, you make the final decision Terri.

    Megan

    thanks megan
    You explained it far better than the docs. They said they would have to send my tissue that was removed to have it tested to see if I was her positive so I don't know that yet. I guess when I decide if I want to take it if I can then they will send it for testing. My concern so far is about the possibility of heart damage. I already have CAD. High coronary calcium score so I don't want to ad to the risk.
  • Megan M
    Megan M Member Posts: 3,000
    terri805 said:

    thanks megan
    You explained it far better than the docs. They said they would have to send my tissue that was removed to have it tested to see if I was her positive so I don't know that yet. I guess when I decide if I want to take it if I can then they will send it for testing. My concern so far is about the possibility of heart damage. I already have CAD. High coronary calcium score so I don't want to ad to the risk.

    You're welcome. I know how
    You're welcome. I know how awful it is to be in a haze not knowing what to do or what the doctor's even talk about. I got my pathology report after my lumpectomy and that told me if that I was Her2 negative. From what I read, you only take the Herceptin if you are HER2 positive, so maybe you won't have to even consider it? I do think they have to monitor your heart closely with it. I am sure that tomorrow others will provide you with more info than me. We will help you Terri.

    Megan
  • LadyParvati
    LadyParvati Member Posts: 328
    terri805 said:

    thanks megan
    You explained it far better than the docs. They said they would have to send my tissue that was removed to have it tested to see if I was her positive so I don't know that yet. I guess when I decide if I want to take it if I can then they will send it for testing. My concern so far is about the possibility of heart damage. I already have CAD. High coronary calcium score so I don't want to ad to the risk.

    They should already know whether you are HER2 +
    You can ask for your test results, and you can ask your oncologist to re-explain everything to you. So often at that first meeting, we are overwhelmed and still getting used to the idea that we have cancer, and a lot of the information is either over our heads or goes in one ear and right out the other. It's OK to ask again. You might want to take a friend along to take notes and to help you in asking questions.

    At this point, your doctors should already know not only whether you are HER2 positive or negative but also whether you are ER and PgR positive/negative. They may also have run other tests that would contribute to treatment decisions.

    If you don't already have it, see if you can find "Dr. Susan Love's Breast Book." It's a wonderful book for explaining all these tests and what they mean.

    Some of the chemos are associated with heart damage--Adriamycin in particular--and that may also have contributed to your oncologist offering you a different treatment option.

    Finally, it's really good that you have an oncologist who conducts/participates in research--that means he/she is keeping up with the latest in cancer treatment. Women who participate in trials generally receive more attention and better care than women who don't simply because the doctor monitors their responses to the trial medications and protocols more closely in order to evaluate how the research is going. That's a positive aspect of participating in a clinical trial.

    Don't feel you have to wait until your next scheduled doctor visit to find out what you need to know. If you like, you can even call tomorrow and ask that the clinic send you copies of all your test results to date, or ask for an appointment with the doctor's nurse navigator or primary nurse so you can ask all those questions you need to ask. They understand--completely!--that patients can become overwhelmed and confused with all the information overload and need to ask some questions more than once. It's really frustrating for you, but with a little more reading and asking questions, you'll start to feel more in control of your own treatment.

    Best of luck!

    Sandy
  • MyTurnNow
    MyTurnNow Member Posts: 2,686 Member
    Terri, I agree with
    Terri, I agree with scheduling another appointment and be sure to take someone along that can take notes. It is all so overwhelming at first that it's difficult to make a decision, especially on the spot. I have a close friend who had DCIS and she had a lumpectomy, radiation and then took Tomaxafin (sp) for 5 years. There are several women on here that were dx with DCIS, hopefully they respond with their treatment. It's important to understand that we are all different though and there isn't one generic treatment. Good luck with your research and let us know what you decide. Continue to ask questions, too, and we'll provide our experiences. Good luck and take care!
  • Kat11
    Kat11 Member Posts: 1,931 Member
    MyTurnNow said:

    Terri, I agree with
    Terri, I agree with scheduling another appointment and be sure to take someone along that can take notes. It is all so overwhelming at first that it's difficult to make a decision, especially on the spot. I have a close friend who had DCIS and she had a lumpectomy, radiation and then took Tomaxafin (sp) for 5 years. There are several women on here that were dx with DCIS, hopefully they respond with their treatment. It's important to understand that we are all different though and there isn't one generic treatment. Good luck with your research and let us know what you decide. Continue to ask questions, too, and we'll provide our experiences. Good luck and take care!

    I am Her2pos and i am
    I am Her2pos and i am getting herceptin. If you are not her2 pos I am not sure why they would be wanting to give you this. However, if your are her2 posI would have a talk with my doctor. I am getting 52 treatments of the drug.
  • crselby
    crselby Member Posts: 441 Member
    dx with DCIS
    My core needle biopsy showed DCIS. Had lumpectomy and brachytherapy rads. When the pathology report came back from the biopsy, the sample had not been tested for ER/PR or Her2. My surgeon later ordered the ER/PR, but I've been told by ALL my doctors that they don't test DCIS for Her2 or oncotype. The trial they want you to participate in is probably going to determine if future women with DCIS will get that test routinely.

    Good luck making the decsion that is right for you.
    ~~Connie~~
  • mirj523
    mirj523 Member Posts: 22
    Confused
    Hi Terri I have DCIS stage 0 and since the DCIS is in more than one part of my breast and I am a small chested woman I have no other choice but to have a masectomy. My surgery is 2/16 and I am having a latissimus dorsi flap with a silicone implant. So many choices it is really difficult to decide just ask lots and lots of questions and read as much as you can from a trusted and reliable source. Good luck to you