Confused :(

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AmandaMarie29
AmandaMarie29 Member Posts: 55
edited March 2014 in Breast Cancer #1
I had my appointment with my surgeon today to fill me in on some details, since I am newly diagnosed. I have Invasive Lobular Carcinoma and I am HER-2/neu. I really have no idea what this is...can ayone help? Also, he wants to schedule surgery for me the week after Thanksgiving. I'm just not sure what to do lumpectomy or mastectomy, how did you ladies decide what to have done? What can I expect, and how do I become comfortable with the idea of losing my breast? UGH!!!!! To many things to think about...this is intense.

Mandi

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  • mlmjt1
    mlmjt1 Member Posts: 537
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    Hi Mandi
    Her 2postive cancers tend to be more aggressive and faster growing which is not a pleasant thing to have...I am her 2positive, did chemo and have to take a drug called herceptin for 1 year every 3 wks.

    I had bilateral mastectomies but I have had fibrocystic breast disease for years. Every time I did a breast exam all I could feel were lumps. To me when they found cancer I had NO problem having them both off. I only had cancer in the right side and it was pretty disseminated thru the breast so taking the lumps out would have left the breast deformed. However, I am 52 years old, not young like you...I still plan to have reconstruction so I look more like i used to, but its a different situation when you are so young.

    AS far as how do you become comfortable with losing the breast? To me, my life is far more important that my chest. If your cancer is small enough that they think they can get it all without deforming the breast, that may be the way to go...talk to your family, find out how much of the breast is involved and if you will need chemo or radiation treatments.

    Hang in there...this is intense,but you will beat it.
    Hugs
    Linda T
  • Whoknowz
    Whoknowz Member Posts: 82
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    Tough choices
    Lobular means it started in a lobe of the breast as opposed to ductal which starts in a duct. Invasive means it has spread outside the lobe in which it started. Other ways they categorize the breast tumor is whether it responds to estrogen, progesterone, or herceptin. Hope that helps with that part of your question.

    We all have our own ways to come to the decision of what to do. I chose a lumpectomy based on my discussion with my surgeon on the biopsy path report, my risk factors, and location. My surgeon was wonderful about taking all the time I needed to talk through what was going on, what my options were, and the consequences of the choices. Good luck, my prayers are with you

    Angela
  • Sher43009
    Sher43009 Member Posts: 602 Member
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    HER2
    Hi Mandi

    I'm also HER2 pos., IDC, ER/PR pos. as well. I went with the lumpectomy on my surgeons advise. I have to have radiation now. Went through 4 A/C chemos and 1 Taxol. I've started the Herceptin and go every 3 weeks for 1 year. Listen to your heart--it'll tell you which way to go.

    HER2 is a growth protein we're born with that attaches itself to cancer to make it grow faster and bigger. A drug called Herceptin is used to disable the protein.

    The ACS has a wonderful book called "Breast Cancer Treatment Guidelines for Patients" It explains all types of breast cancer, options, treatments. I think you can get it on the website.

    Wish you luck and fast healing.
  • LadyParvati
    LadyParvati Member Posts: 328
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    Confused--Have Hope
    It IS intense, and very frightening. One thing you can do to help yourself is what you have already started doing--ask questions. Ask LOTS of questions. I created a whole list of questions, well over 30, to ask when I was first diagnosed, and I took them to three different surgeons before making my decision about not only the type of surgery but who would be doing the surgery. I didn't choose the first doctor because she was very eager to do mastectomies and implied that mastectomy would reduce my chances of recurrences quite a bit more than lumpectomy with radiation, which isn't true.

    I was diagnosed the last day of Sept, and I just had my surgery on 11/6--you do not have to rush into this. That cancer has been in your breast for, probably, 7-8 years, according to what I've learned. A couple more weeks of thinking about it and doing some research to learn about your options won't be any more dangerous.

    Something else you need to know is your estrogen-receptor (ER) and progesterone-receptor (PgR) statuses. Are they negative or positive? These affect your treatment options--if one or both is positive, you can use hormone-blocking therapies, and in some such cases, women can avoid chemotherapy (though they must take the hormone-blocking treatment for the rest of their lives). If negative, chemo will definitely be the treatment recommended.

    Your decision about the surgery is going to be based on your feelings about each surgical outcome. With lumpectomy, you keep your own breast--at least part of it. How much depends upon the size of your tumor, its location, and your surgeon--some surgeons take larger margins (tissue around the cancer to ensure getting ALL of the cancer) than others. I chose a lumpectomy with a surgeon that would take larger margins because I have ER neg, PgR neg cancer with a higher risk of recurrence, so, even though I didn't want a mastectomy, I figured more was better. With mastectomy, you have options for reconstruction that some women like, but you also have loss of sensation in that breast. Learn about both the pros AND the cons of each one before making your decision.

    A couple of good websites to help you learn and make decisions:

    http://www.hopkinsbreastcenter.org/library/diagnosis_treatment/full.shtml (An article on making choices about breast cancer at The Johns Hopkins Breast Center)

    http://www.breastcancer.org/ has a decision-making program that explains the recommendations for your stage & type of cancer and helps you decide the type of surgery, etc.

    The National Breast Cancer Coalition Fund has a great booklet, Guide to Quality Breast Cancer Care, that provides lots of explanations, info about treatments, and info about insurance and other coverage, as well as your rights.

    curetoday.com has a whole bunch of articles explaining the terms with which you're being confronted

    Finally, Dr. Susan Love's Breast Book by Dr. Susan Love is really, really helpful. I think the most recent edition is the 4th--published in 2005.

    Lots of luck, Mandi--wish I could give you a hug. Just know that everyone here truly understands your fears and the challenges of making decisions right now.

    Sandy
  • S3
    S3 Member Posts: 28
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    Some plastic surgeon's will
    Some plastic surgeon's will do reconstruction right away, same surgery as the mastectomy.
  • AmandaMarie29
    AmandaMarie29 Member Posts: 55
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    Confused--Have Hope
    It IS intense, and very frightening. One thing you can do to help yourself is what you have already started doing--ask questions. Ask LOTS of questions. I created a whole list of questions, well over 30, to ask when I was first diagnosed, and I took them to three different surgeons before making my decision about not only the type of surgery but who would be doing the surgery. I didn't choose the first doctor because she was very eager to do mastectomies and implied that mastectomy would reduce my chances of recurrences quite a bit more than lumpectomy with radiation, which isn't true.

    I was diagnosed the last day of Sept, and I just had my surgery on 11/6--you do not have to rush into this. That cancer has been in your breast for, probably, 7-8 years, according to what I've learned. A couple more weeks of thinking about it and doing some research to learn about your options won't be any more dangerous.

    Something else you need to know is your estrogen-receptor (ER) and progesterone-receptor (PgR) statuses. Are they negative or positive? These affect your treatment options--if one or both is positive, you can use hormone-blocking therapies, and in some such cases, women can avoid chemotherapy (though they must take the hormone-blocking treatment for the rest of their lives). If negative, chemo will definitely be the treatment recommended.

    Your decision about the surgery is going to be based on your feelings about each surgical outcome. With lumpectomy, you keep your own breast--at least part of it. How much depends upon the size of your tumor, its location, and your surgeon--some surgeons take larger margins (tissue around the cancer to ensure getting ALL of the cancer) than others. I chose a lumpectomy with a surgeon that would take larger margins because I have ER neg, PgR neg cancer with a higher risk of recurrence, so, even though I didn't want a mastectomy, I figured more was better. With mastectomy, you have options for reconstruction that some women like, but you also have loss of sensation in that breast. Learn about both the pros AND the cons of each one before making your decision.

    A couple of good websites to help you learn and make decisions:

    http://www.hopkinsbreastcenter.org/library/diagnosis_treatment/full.shtml (An article on making choices about breast cancer at The Johns Hopkins Breast Center)

    http://www.breastcancer.org/ has a decision-making program that explains the recommendations for your stage & type of cancer and helps you decide the type of surgery, etc.

    The National Breast Cancer Coalition Fund has a great booklet, Guide to Quality Breast Cancer Care, that provides lots of explanations, info about treatments, and info about insurance and other coverage, as well as your rights.

    curetoday.com has a whole bunch of articles explaining the terms with which you're being confronted

    Finally, Dr. Susan Love's Breast Book by Dr. Susan Love is really, really helpful. I think the most recent edition is the 4th--published in 2005.

    Lots of luck, Mandi--wish I could give you a hug. Just know that everyone here truly understands your fears and the challenges of making decisions right now.

    Sandy

    LADIES THANK YOU!
    Thank you for all of your information. I am HER/2 negative, ER postitive and PgR postitive. My surgeon suggested a mastectomy because there are so many little nodules, and my breast are small so if we did a lumpectomoy it would leave me very deformed anyway. He also said since I am so young they would def. give me chemo because cancer is more aggressive a younger age. In his exact words he told me "My team is going to throw everything but the kitchen sink at you to make sure you live to be 80." He also said that reconstruction is a possibility later down the road if I choose, but it wouldn't be done right away. It's very scary but I know I can handle it. The way I found my lumps were not by chance so I know I have a higher power with me every step of the way.

    *MANDI**
  • MyTurnNow
    MyTurnNow Member Posts: 2,686 Member
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    LADIES THANK YOU!
    Thank you for all of your information. I am HER/2 negative, ER postitive and PgR postitive. My surgeon suggested a mastectomy because there are so many little nodules, and my breast are small so if we did a lumpectomoy it would leave me very deformed anyway. He also said since I am so young they would def. give me chemo because cancer is more aggressive a younger age. In his exact words he told me "My team is going to throw everything but the kitchen sink at you to make sure you live to be 80." He also said that reconstruction is a possibility later down the road if I choose, but it wouldn't be done right away. It's very scary but I know I can handle it. The way I found my lumps were not by chance so I know I have a higher power with me every step of the way.

    *MANDI**

    Mandi, you have a very
    Mandi, you have a very positive outlook and it WILL take you through this journey....we'll help you get through the rest of the way!! Take care and post often.
  • Marcia527
    Marcia527 Member Posts: 2,729
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    LADIES THANK YOU!
    Thank you for all of your information. I am HER/2 negative, ER postitive and PgR postitive. My surgeon suggested a mastectomy because there are so many little nodules, and my breast are small so if we did a lumpectomoy it would leave me very deformed anyway. He also said since I am so young they would def. give me chemo because cancer is more aggressive a younger age. In his exact words he told me "My team is going to throw everything but the kitchen sink at you to make sure you live to be 80." He also said that reconstruction is a possibility later down the road if I choose, but it wouldn't be done right away. It's very scary but I know I can handle it. The way I found my lumps were not by chance so I know I have a higher power with me every step of the way.

    *MANDI**

    My surgeon told me the same
    My surgeon told me the same thing-about hitting me with everything and can't do reconstruction until later. I never did go back for the reconstruction but this is a personal choice. Mine was aggressive too but I was 52. This was in 2003.
  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member
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    LADIES THANK YOU!
    Thank you for all of your information. I am HER/2 negative, ER postitive and PgR postitive. My surgeon suggested a mastectomy because there are so many little nodules, and my breast are small so if we did a lumpectomoy it would leave me very deformed anyway. He also said since I am so young they would def. give me chemo because cancer is more aggressive a younger age. In his exact words he told me "My team is going to throw everything but the kitchen sink at you to make sure you live to be 80." He also said that reconstruction is a possibility later down the road if I choose, but it wouldn't be done right away. It's very scary but I know I can handle it. The way I found my lumps were not by chance so I know I have a higher power with me every step of the way.

    *MANDI**

    Welcome Mandi
    We are sorry that you are in the club, but we welcome you and you will find a lot of valuable info here. I was diagnosed in 1987 with invasive ductal carcinoma: lg tumor, 4 nodes, ER+. I had to have a mastectomy also because of small boobs and large tumor (spider shaped). I had 6 months of chemo, 2 months of radiation and 7 years of tamoxifen (recommendation is now 5 years--I was a premenopausal guinea pig). I chose to have reconstruction using abdominal tissue because I was young and did not want to have to worry with implants (implants can often have a limited "life" of about 10 years). What you ultimately decide is a personal decision made between you and your physician. Personally, I am glad that I have a breast using my own tissue. Just to give you lots of hope: in 1987, I didn't think I would make it 5 years, but here I am 22 years later. Good luck to you and I will be praying for you!
  • AmandaMarie29
    AmandaMarie29 Member Posts: 55
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    Welcome Mandi
    We are sorry that you are in the club, but we welcome you and you will find a lot of valuable info here. I was diagnosed in 1987 with invasive ductal carcinoma: lg tumor, 4 nodes, ER+. I had to have a mastectomy also because of small boobs and large tumor (spider shaped). I had 6 months of chemo, 2 months of radiation and 7 years of tamoxifen (recommendation is now 5 years--I was a premenopausal guinea pig). I chose to have reconstruction using abdominal tissue because I was young and did not want to have to worry with implants (implants can often have a limited "life" of about 10 years). What you ultimately decide is a personal decision made between you and your physician. Personally, I am glad that I have a breast using my own tissue. Just to give you lots of hope: in 1987, I didn't think I would make it 5 years, but here I am 22 years later. Good luck to you and I will be praying for you!

    Thank you soooooo much
    Thank you soooooo much Cypress Cynthia...

    lotsa love

    mandi
  • jolenew
    jolenew Member Posts: 38
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    It is your decision
    Mandy, I am HER2pos, I had a lumpectomy and that was my decision, I thought it was best for me. You need to listen to your drs and your heart and you be the one to decide. Everyone is different and no one can decide for you.
    Good Luck