HER2 Support Group Forums - View Single Post - HER2+, ER+, PR+ and are taking Tamoxifen.

firstplace · 08-25-2006, 09:42 PM

I was pre-menopausal and her2 amplified 8.6 + ER+HR,PR+ I originally was diagnosed with dcis negative for all the above. During my 2nd lumpectomy, they found invasive less than a centimeter that was in my tissue, and none of the lymphnodes. They found it by accident, but I know it was God's hand guiding my surgeon's knife to save my life. They didn't even know what they had gotten and they had clear borders. They recommended radiation, not knowing my FISH report(I know I got that wrong) was 8.6 amplified. This resulted in my tissue being sent for the oncotype DX which is fairly new. It showed I had 40% chance of recurrence with tamoxifen and radiation alone, and 27% with chemo and radiation. Only thing is they didn't specify what kind of chemo, how long, and I don't remember if herceptin was in play with those odds. Either way, I had to wait until January to start my chemo after being diagnosed with cancer on 9-22-05. I went into chemically induced menopause, although I spotted lightly in January for a day or 2, then nothing since. As with the rest of you, my doctor did not give me any options and I was under too much stress at the time to know that i had options. My surgeon told me to trust the oncologist! Well, I didn't get who he recommended because of availability but they were out of the same office and I was told she was a good doctor who i could trust. My mistake was not getting a second opinion. She put me on Adramiacin/Cytoxin for 4 rounds every 3 weeks. I noticed alot of people were getting taxol and all the research I found showed that if you got A/C you got Taxol after it for 12 weeks. She told me because my tumor size was so small I didn't need it. I went along with it and went for my radiation and started herceptin during the radiation. Herceptin with the Adriamycin drug is very dangerous when combined and may still hurt me. Well, my doctor never seemed to have time to answer any of my questions. I am anemic and was anemic since 2000 and nothing helped because if I took iron i was constipated. Most of you are experiencing loose stools, I am having constipation from the herceptin and Taxol, or just one, but which? The last time I saw my old oncologist, she told me to hurry up and get in my gown because she didn't have alot of time today. That was after waiting for 6 weeks to see her when she didn't have time the previous time either. I would say she spent around 15 minutes with me since i became her patient. I asked for a copy of my records at the front putting down my reason as possibly looking for another doctor. I had no idea how I was going to find someone I trusted not connected to the same office. I had a call from the hospital to confirm information about my medical records and ended up getting the name of a doctor who dealt with anemia issues. I didn't even know my onc. was a hemotologist! The doctor saw me right away, spend 1-1/2 hours with me and then as he was reviewing my records, he asked me if I really didn't get Taxol. I said no, was it too late? He said it is never too late. I think I may be the only one to start Taxol after being done with radiation and 3 months past chemo before starting again. My hair started growing back again, and I was told I would lose it again. He made me wait 2 weeks before I could give him my answer. It was absolutely yes. How could I face my kids if I had not done everything I could to prevent it when i had the chance if it comes back. Before herceptin, getting her2+ was considered a death sentence according to some of my other doctors. I don't think it is that bad, but it sure scared me enough. The tamoxifen can cause uterine cancer ovarian cancer. I don't remember the stats now, but Herceptin causes one and Tamoxifen causes another. If I get a hysterectomy after my chemo, my ovaries will be out and I can go on a safer drug than tamoxifen and the risks will be less. We need to pray for each other since the her2 can travel un-noticed. I feel we need to do all we can if we can. I know I don't need my ovaries or my vagina or uterus anymore, and I can do something about that. I am already having hot flashes and mood changes and vaginal dryness making sex not as enjoyable, so this is another road to travel. If anyone has any more information for me, please let me know. Also, I wasn't even given the option of a mastectomy probably because it didn't go to my lymphnodes and they think I am still young.(46 till October)but I would have liked to know my options. I have 9 and 12 year old boys at home who are very active. It hasn't been easy as I am sure it hasn't been on any of you.

There is a great book out there called "A Reason For Hope through your fight with cancer." I might have the title wrong, but it really helped me.

One thing I have learned is that fear comes from lack of knowledge. That is why this sight is so great. We are learning from each other.

One more thing, question for all of you. If your cancer returned in either form, dcis or invasive, would you have your breast removed, one or both, or neither? I have had 2 lumpectomies and 2 biopsies off my size AA breast.
I go for my followup mammogram as soon as I schedule it and I had calcifications they had me come in for a second view in June for, and now I am feeling pain. It probably is the non-invasive, but I am really tired of this.

Hoping for help,

Firstplace(Jesus is Firstplace, not me).

08-25-2006, 09:42 PM	#34
firstplace Member Join Date: Aug 2006 Location: Illinoi Posts: 10	I was pre-menopausal and her2 amplified 8.6 + ER+HR,PR+ I originally was diagnosed with dcis negative for all the above. During my 2nd lumpectomy, they found invasive less than a centimeter that was in my tissue, and none of the lymphnodes. They found it by accident, but I know it was God's hand guiding my surgeon's knife to save my life. They didn't even know what they had gotten and they had clear borders. They recommended radiation, not knowing my FISH report(I know I got that wrong) was 8.6 amplified. This resulted in my tissue being sent for the oncotype DX which is fairly new. It showed I had 40% chance of recurrence with tamoxifen and radiation alone, and 27% with chemo and radiation. Only thing is they didn't specify what kind of chemo, how long, and I don't remember if herceptin was in play with those odds. Either way, I had to wait until January to start my chemo after being diagnosed with cancer on 9-22-05. I went into chemically induced menopause, although I spotted lightly in January for a day or 2, then nothing since. As with the rest of you, my doctor did not give me any options and I was under too much stress at the time to know that i had options. My surgeon told me to trust the oncologist! Well, I didn't get who he recommended because of availability but they were out of the same office and I was told she was a good doctor who i could trust. My mistake was not getting a second opinion. She put me on Adramiacin/Cytoxin for 4 rounds every 3 weeks. I noticed alot of people were getting taxol and all the research I found showed that if you got A/C you got Taxol after it for 12 weeks. She told me because my tumor size was so small I didn't need it. I went along with it and went for my radiation and started herceptin during the radiation. Herceptin with the Adriamycin drug is very dangerous when combined and may still hurt me. Well, my doctor never seemed to have time to answer any of my questions. I am anemic and was anemic since 2000 and nothing helped because if I took iron i was constipated. Most of you are experiencing loose stools, I am having constipation from the herceptin and Taxol, or just one, but which? The last time I saw my old oncologist, she told me to hurry up and get in my gown because she didn't have alot of time today. That was after waiting for 6 weeks to see her when she didn't have time the previous time either. I would say she spent around 15 minutes with me since i became her patient. I asked for a copy of my records at the front putting down my reason as possibly looking for another doctor. I had no idea how I was going to find someone I trusted not connected to the same office. I had a call from the hospital to confirm information about my medical records and ended up getting the name of a doctor who dealt with anemia issues. I didn't even know my onc. was a hemotologist! The doctor saw me right away, spend 1-1/2 hours with me and then as he was reviewing my records, he asked me if I really didn't get Taxol. I said no, was it too late? He said it is never too late. I think I may be the only one to start Taxol after being done with radiation and 3 months past chemo before starting again. My hair started growing back again, and I was told I would lose it again. He made me wait 2 weeks before I could give him my answer. It was absolutely yes. How could I face my kids if I had not done everything I could to prevent it when i had the chance if it comes back. Before herceptin, getting her2+ was considered a death sentence according to some of my other doctors. I don't think it is that bad, but it sure scared me enough. The tamoxifen can cause uterine cancer ovarian cancer. I don't remember the stats now, but Herceptin causes one and Tamoxifen causes another. If I get a hysterectomy after my chemo, my ovaries will be out and I can go on a safer drug than tamoxifen and the risks will be less. We need to pray for each other since the her2 can travel un-noticed. I feel we need to do all we can if we can. I know I don't need my ovaries or my vagina or uterus anymore, and I can do something about that. I am already having hot flashes and mood changes and vaginal dryness making sex not as enjoyable, so this is another road to travel. If anyone has any more information for me, please let me know. Also, I wasn't even given the option of a mastectomy probably because it didn't go to my lymphnodes and they think I am still young.(46 till October)but I would have liked to know my options. I have 9 and 12 year old boys at home who are very active. It hasn't been easy as I am sure it hasn't been on any of you. There is a great book out there called "A Reason For Hope through your fight with cancer." I might have the title wrong, but it really helped me. One thing I have learned is that fear comes from lack of knowledge. That is why this sight is so great. We are learning from each other. One more thing, question for all of you. If your cancer returned in either form, dcis or invasive, would you have your breast removed, one or both, or neither? I have had 2 lumpectomies and 2 biopsies off my size AA breast. I go for my followup mammogram as soon as I schedule it and I had calcifications they had me come in for a second view in June for, and now I am feeling pain. It probably is the non-invasive, but I am really tired of this. Hoping for help, Firstplace(Jesus is Firstplace, not me).