HER2+ breast cancer

Options

Hi,

I found out in December 2008, that I have breast cancer. Dr. Ziegler told me that my tumor was

very small. He did a biopsy on November 24, 2008. When I went back to him, I ask what he would suggest. He said radiation, then he sent me to see the cancer doctors. Dr. Devine is the radiation oncologist, and Dr. MMankin is the Chemo oncologist. Well, I didn't have my breast removed because I thought it was so small there was no need to worry qbout it.

I saw Dr. Mankin on December11,2008. He said I didn't need chemo, and as soon as I got through with radiation, he would put me on a hormone theraphy pill for 5 years. I saw Dr. Devine on December 12,2008. He said there was a 90% chance of my being healed.

I received a letter from Dr. Mankin on December17,2008, about taking Herceptin, I ask to talk to Dr. Mankin about this medicine, i was shocked when he told me I was HER2+, he said he didn't have this information to start with. Needless to say I am scared. Why wasn't I told this to start with.

Also, I went back to Dr.Zeigler on December 22, 2008, because my breast was swollen and really red, he said it was normal, he gave me some antibotic medicine, which I have taken all of it, and my breast is still swollen, it really worries me.

I start radiation treatments January 6, 2009, and Herceptin January 7, 2009. I just hope and pray it will all work out. I just don't understand why I wasn't told this at the start of all of this.

I know I serve Jesus Christ, and I know He can heal me, I think that gives me strenght to carry on, I just wonder why Dr. Ziegler didn't advice to remove my right breast.

Comments

  • DianaT
    DianaT Member Posts: 532
    edited December 2008

    Motherof7,

    I am not sure why your doctor recommended or did not recomend breast removal except that decision is pretty much entirely yours to make since your tumor was small.  From what I understand, very small tumors or DCIS is not routinely tested for Her2 status and this test sometimes takes longer to get back than the other tests.

    I also believe and serve the Lord and Saviour, believe that I am healed and will continue to be cancer free for a long life. 

  • dlb823
    dlb823 Member Posts: 9,430
    edited December 2008

    Motherof7 ~  A tumor being small does not minimize how it needs to be treated so that it can't possibly travel to other areas of your body where it will be much harder to treat.  I'm certainly not an expert, but I don't think I've ever heard of totally forgoing surgery (unless the biopsy got it all with a wide margin?) and moving right to radiation.  But without more details about exactly what they found, it's hard to know.  I think my best suggestion to you is to get a second opinion.  Are the doctors you mentioned at a comprehensive breast center?  Those are often the best places for a thorough evaluation, where they will look at every test and report you have had to date, recommend any that may be missing in your workup, and then advise the best course of treatment.  Armed with that information, you can always go back to your original doctors if you  have confidence in them and want to continue being treated by them.  But it sounds like a fresh perspective and 2nd opinion might be prudent at this point.  The fact that someone didn't know you were Her2+ even before making any treatment recommendations is a bit surprising to me.

    Good luck to you.  Glad you found this forum for support, and please keep us posted ~  Deanna 

  • susiered
    susiered Member Posts: 256
    edited December 2008

    Motherof7 welcome to the boards although I am so sorry you have to be here. First let me say I am no expert, I can only tell you what I was told by my Dr.s. I am also her2+, which they knew from the very beginning, but my tumor was almost 5cm and in the lymph nodes. I was but immediatly on herceptin, carboplatin, and taxotere. I was told because of where my tumor was (12 o'clock) A mastectomy would be better for me, and because it was so large. After I went through my chemo, my tumor shrunk to about 2cm. I was told then I might could have a lumpectomy because it had shrunk so well, but cosmetically it would not look good.I was told there was no better advantage with having a mast. I don't know how small yours was, but if they were able to get clear margins, I would not worry too much.

    I don't kno0w why you were not told about the her2 to begin with. Did they do a biopsy first? That should have told them. At any rate herceptin is very doable. Not many side effects, they just have to keep a close look on your heart. And it is THE wonder drug for us her2 patients!!

    It sound like you have a bad infection in your breast, I would definatly call your dr. and let him know it is still red. I just had an infection in my right expander after double mast. I was put in the hospital for IV antibiotics. Not trying to scare you, just don't let it go.

    I hope it works out o-kay, just pray to that wonderful savior of ours and try not to worry too much. You will be in my thoughts and prayers. Maybe someone who might have a little more info will chime in also! Susan  

  • dlb823
    dlb823 Member Posts: 9,430
    edited December 2008

    Motherof7 ~ I'm not sure if I'm missing something.  Did you have a lumpectomy?  From your post, I thought perhaps all you've had is a biopsy, and they advised no surgery, which seemed strange.  Did you also have a lumpectomy?    Deanna

  • susiered
    susiered Member Posts: 256
    edited December 2008

    You are right Deanna, I went back and reread her post. It did not say....I just assumed!

  • Sassa
    Sassa Member Posts: 1,588
    edited December 2008

    Motherof7,

    I'm confused.  Are you in the United States?  If so, herceptin is not approved for use without chemotherapy (either with the herceptin or herceptin after the chemo).  Your insurance may not cover the herceptin if given alone.

    The Lord helps those who help themselves.

  • suemed8749
    suemed8749 Member Posts: 1,151
    edited December 2008

    I'm with Sassa - I've never heard of getting herceptin without chemo. Everything I've read indicates that the efficacy of herceptin depends upon it being given in conjunction with chemo. Hopefully, your medical oncologist will clear this up when you see him. I did 6 treatments of taxol and carboplatin with herceptin and now get herceptin alone every 3 weeks. I'm sure the thought of chemo is frightening, but all of us who have had it will tell you that it's "doable."

    There is lots of valuable info about herceptin on this site and also the herceptin site.

  • Motherof7
    Motherof7 Member Posts: 140
    edited January 2009

    They did a biopsy, and my surgeon said he took the lump out. I have six more days of radiation. My first dose of Herceptin was on January 6, 2009. I did good at the cancer center, but when I got home i passed out, had chills and threw up quite a bit. The second dose was on January 28, 2009, it didn't seem to bother me. I am still trusting in my Lord and Savior. I think I am doing better now, I sure was scared to start with. I thank you each and everyone who prayed for me. I ask God each night to heal people with cancer. Thanks for all your support.

  • SusieSwan
    SusieSwan Member Posts: 111
    edited February 2009

    I received 4 cycles of dose dense A/C followed by 1 year of herceptin so it very much is approved to use without chemo...my doctors are at a comprehensive cancer care center.

  • Lories
    Lories Member Posts: 351
    edited February 2009

    I have heard of herceptin w/o chemo, I think it is shown on the web page.  I am still waiting to hear what my final count is. 

    Also, under hormones there are some threads on herceptin. you may want to check them out.

  • miss-di
    miss-di Member Posts: 161
    edited February 2009

    I had Herceptin without chemo for 1 and 1/2 years.  It worked well, I also took Aromasin.

  • Sassa
    Sassa Member Posts: 1,588
    edited February 2009

    Susie Swan, Read a little bit closer. I said herceptin is approved for used with chemo or following chemo.  It is not approved for use by itself without any type of chemo either with the herceptin or proceeding the herceptin.

  • Motherof7
    Motherof7 Member Posts: 140
    edited February 2009

    I live in Florida, right on the border, I am going to a cancer center in Georgia. I have already had two doses of Herceptin, and they have not given me any chemo with it. I like two more radiation treatments and I will be through with that, then I am suppose to go on a hormone pill. I am confident that the God in heaven will be with me and everything will work out o.k. May God bless each and everyone of you who has breast cancer, or any other form of cancer. May Jesus Christ be with you all.

  • Motherof7
    Motherof7 Member Posts: 140
    edited February 2009

    I went back to the Dr. yesterday, and i was told because of my age, I'm 65, is the reason I was not given chemo theraphy, he seemed to think that because I am considered old, i didn't need the chemo. One day, if the Lord leaves this world standing, they will get old also. I wonder how they would feel if they were diagnosed with cancer, and were told they were too old for chemo?

    My husband ask what he meant by that, then he said ; "Well, the hormone theraphy pills would do just as good as the chemo. What do you all think?

  • Beesie
    Beesie Member Posts: 12,240
    edited February 2009

    Motherof7,

    You mention that you had a biopsy.  Was this a surgical biopsy (rather than a needle biopsy)?  Having a surgical biopsy is exactly the same thing as having a lumpectomy.  So if you had a surgical biopsy and the entire area of cancer was removed with adequate margins (i.e. there was a sufficient area around the edge of the removed tissue with no cancer cells), then your doctor no doubt feels confident that all the cancer has been removed from your breast.  In this type of situation, additional surgery is usually not necessary. 

    You ask why it wasn't advised that you remove your breast.  Ultimately, this is your decision, but when someone has a tumor that is small enough to fully remove with a lumpectomy or excisional biopsy, then from a medical standpoint, a mastectomy usually isn't considered necessary.  The survival rate for those who have a lumpectomy + radiation is the same as the survival rate for those who have a mastectomy.

    The need for Herceptin, and the questions about whether or not to have chemo, relate not to the breast cancer that was in your breast, but to a concern that some cancer cells may have escaped the breast.  These treatments are used to fight against distant recurrence, a recurrence that happens outside of the breast.  So if it's believed that you need Herceptin, you would still be advised to have Herceptin even if you'd had a mastectomy.  And if it was felt that you needed chemo, you would still be advised to have chemo even if you'd had a mastectomy.

    As for whether chemo should be considered, one big factor is the size of your tumor.  You say that it was small, but do you know the exact size?  Someone who has tumor that is 6mm might not be prescribed chemo but someone who has a tumor that is 10mm might be put on chemo.  So even a small difference in size could make a difference in the treatment plan.  And did you have a sentinel node biopsy? Was it confirmed that there is no lymph node involvement?  This would be another key factor in the decision on whether or not to prescribe chemo.  Age, since you are only 65, shouldn't really be a factor, in my opinion.  If you were 80 perhaps that would be different, but at 65 I would think that if the pathology of your cancer indicates that you should have chemo, then you should have chemo.  And in any case, I think that this should have been discussed with you - if someone younger with the same pathology as you would have been given chemo, then certainly your doctor should have discussed it with you and given you the choice.

    As for prescribing Herceptin without chemo, while it appears that Herceptin combined with an AI but without chemo has been seen to be effective for those with later stage BC, for those with early stage BC, Herceptin without chemo seems to be contrary to approvals and what's generally accepted as standard practice procedures.  It does appear that there is interest in this as a therapy: 

    • From BC.org:  Most U.S. oncologists have favored chemotherapy in patients whose tumors are HER2-positive. The use of hormonal therapy and Herceptin without chemotherapy is particularly appealing in somebody with an otherwise "lower risk" tumor, for example, small tumor, negative nodes. The benefits of chemotherapy may be small in somebody with a small tumor and negative lymph nodes. Nonetheless, as I said above, most oncologists will recommend chemotherapy in this setting. This is something you'll want to talk about with your doctor in your particular case. At the San Antonio conference, the combination of an aromatase inhibitor and Herceptin was shown to be highly effective in women with advanced, metastatic breast cancer. Most of us who take care of patients have used this combination for quite some time, often with long-lasting results. Studying this combination without chemotherapy in women with early stage disease will be important before it becomes standard practice. http://www.breastcancer.org/news_research/archives/ask_expert/2006_12/
    • From a Dr. Susan Love interview: "DR LOVE:   But, bottom line is, we haven't really tested Herceptin without chemotherapy in the adjuvant setting. But what about, you have a 70-, 80-year-old woman who you're really concerned about giving chemotherapy. Would you discuss giving the Herceptin without chemotherapy?  DR SLAMON:   Absolutely. I think you have to discuss all options with the patient. And, in fact, we've used monotherapy in a couple of examples where patients come in and - what goes on, we tell them what the possibilities are, tell them what the toxicities are, not just what we've talked about with cardiotoxicity, but the nausea, vomiting, hair loss, increased risk of infection. And many of these patients that are looking at quality-of-life issues will say, "I don't want any of that. I'll accept the therapy if it doesn't cause any of that," and for those patients, we've used Herceptin monotherapy. There aren't very many out there like that, but there are a few."  http://breast.cancerqanda.com/interviews/detail.dot?inode=38071&topic=40983&clickedONfrom=page

    Here is the prescribing documentation for Herceptin, which confirms that Herceptin is approved for Adjuvent Breast Cancer only for use in combination with chemotherapy: http://www.gene.com/gene/products/information/pdf/herceptin-prescribing.pdf

  • Motherof7
    Motherof7 Member Posts: 140
    edited February 2009

    I had a biopsy, and the Dr. told me, he took the lump out. They also took out three lymph nodes, they tested negative for cancer. I thank God for that. I guess it just bothered me a little when the Dr. told me because of my age, I didn't need the chemo. It just made me feel like if I was younger they would have gave it to me. I am thankful to my God and Savior that I didn't have to have chemo. My tumor was a 1.8 when it was removed. I just want to thank all of you, who have given me encouragement. I really didn't mean to complain, it just shook me up a little when the Dr. talked about my age, it just made me wonder if I was younger, would I be getting better care. I am scheduled for 10 treatments for Herceptin, I have already received three of them. I thought I was through with radiation, but they gave me ten more treatments. They are doing the radiation on the place where the Dr. took the lump out. I will be through wi them on Monday. I pray all of you will be healed. I thank God for having a place to discuss my concerns. Thank You All!!!!!!!!!!

Categories