Back in 2006 or 2010 when I started to get a lot of atypical ductal hyperplasia my surgeon brought up the option of Tamoxifen. I chose not to because of the risk of blood clots. I've so far been managed okay with every 3 yr MRI, annual mammo and every 6 months ultrasound for 2-3 years. I had lumpectomies in 2006, 2010, and 2018 for papilloma, ADH, sclerosing scar. But I'm now in my 2nd year of abnormal MRI and mammo results on both breasts heading to two biopsies. I've done A LOT of research the last week. Do you know if you have the pleomorphic type of LCIS? That carries a higher risk for development of cancer.
Hi! How did your biopsies turn out? Did you end up needed surgery ? I was diagnosed with ADH in December. Just had surgery to remove two areas they found in right breast.
I have LCIS in both breast. And Atypical ductal hyperplasia in my right. I had a lumpectomy in both and thankfully it all came back clear. I haven’t seen an oncologist and no one has recommended that to me. They are wanting me to start Tamoxifen in March. I am concerned with all the side affects. I will be having a mammogram and MRI once a year. I feel lost as to what I should do.
@nbrooks - I'm sorry that you are part of this group...not a group one chooses to be in, but glad that it is here for all of us for support. If you don't mind answering, but was your initial diagnosis LCIS, or was it an upgrade from a different initial diagnosis, like atypical lobular hyperplasia (ALH)? I have been diagnosed with ALH and was told that it will not turn into cancer, but that it is a marker for potential cancer that is lurking elsewhere. Thank you.
Hello all,
I was diagnosed with invasive lobular carcinoma in one breast — had a lumpectomy, radiation and now aromatase inhibitor therapy prescribed for 5 years. Also have LCIS in my other breast, which I was told “is not cancer,” so it was not recommended for removal. It worries me occasionally, but this was an highly respected and experienced breast surgeon at Memorial Sloan Kettering. I decided to trust her recommendation. Anyone else have an similar experience?
Thanks!
@nbrooks - I'm sorry that you are part of this group...not a group one chooses to be in, but glad that it is here for all of us for support. If you don't mind answering, but was your initial diagnosis LCIS, or was it an upgrade from a different initial diagnosis, like atypical lobular hyperplasia (ALH)? I have been diagnosed with ALH and was told that it will not turn into cancer, but that it is a marker for potential cancer that is lurking elsewhere. Thank you.
Hello! Yes this is not a group I would like to be in. And I have had so many questions. Some things haven’t gotten answers for. I had to have a biopsy on both breast. The he results from that biopsy is that I have LCIS in both breasts and ALH in my right breast. I was told this puts me at a 40% more likely chance to develop breast cancer. I live in Greenville, SC. We have a Breast Cancer Prevention Center here. I have gone to one appointment so far. The want me to go on Tamaxifin. I also have Lupus. After speaking with my Rheumatologist, I found out that Luoys increases your chance of getting Uterine Cancer as well as this medication. So I have decided not to take the medication. I will have a mammogram and MRI next once a year (every six months). I am taking this very seriously due to the information I have found and told. I did have a lumpectomy on both breast. I hope this helps. Please feel free to reach out to me with any more questions. I find it comforting to be able to speak with someone that has a similar or same diagnosis.
Hello all,
I was diagnosed with invasive lobular carcinoma in one breast — had a lumpectomy, radiation and now aromatase inhibitor therapy prescribed for 5 years. Also have LCIS in my other breast, which I was told “is not cancer,” so it was not recommended for removal. It worries me occasionally, but this was an highly respected and experienced breast surgeon at Memorial Sloan Kettering. I decided to trust her recommendation. Anyone else have an similar experience?
Thanks!
I was diagnosed with LCIS in both breast and had a lumpectomy in both to remove as much as they could. I understand your Doctor is really good, but I might would seek a second opinion about the breast they didn’t remove the irregular cells. That would concern me as well.l; especially since it did show cancer in the other one.
Hello! Yes this is not a group I would like to be in. And I have had so many questions. Some things haven’t gotten answers for. I had to have a biopsy on both breast. The he results from that biopsy is that I have LCIS in both breasts and ALH in my right breast. I was told this puts me at a 40% more likely chance to develop breast cancer. I live in Greenville, SC. We have a Breast Cancer Prevention Center here. I have gone to one appointment so far. The want me to go on Tamaxifin. I also have Lupus. After speaking with my Rheumatologist, I found out that Luoys increases your chance of getting Uterine Cancer as well as this medication. So I have decided not to take the medication. I will have a mammogram and MRI next once a year (every six months). I am taking this very seriously due to the information I have found and told. I did have a lumpectomy on both breast. I hope this helps. Please feel free to reach out to me with any more questions. I find it comforting to be able to speak with someone that has a similar or same diagnosis.
@nbrooks i was also diagnosed in 2021 with invasive DCIS and had a lumpectomy, chemo, and then radiation. Unless someone has been through it, they don’t understand. I totally agree, we need to support each other and I appreciate your answer to my question. Please feel free to ask me any questions as well. Prayers and hugs to you 🙏
Hello! Yes this is not a group I would like to be in. And I have had so many questions. Some things haven’t gotten answers for. I had to have a biopsy on both breast. The he results from that biopsy is that I have LCIS in both breasts and ALH in my right breast. I was told this puts me at a 40% more likely chance to develop breast cancer. I live in Greenville, SC. We have a Breast Cancer Prevention Center here. I have gone to one appointment so far. The want me to go on Tamaxifin. I also have Lupus. After speaking with my Rheumatologist, I found out that Luoys increases your chance of getting Uterine Cancer as well as this medication. So I have decided not to take the medication. I will have a mammogram and MRI next once a year (every six months). I am taking this very seriously due to the information I have found and told. I did have a lumpectomy on both breast. I hope this helps. Please feel free to reach out to me with any more questions. I find it comforting to be able to speak with someone that has a similar or same diagnosis.
I was diagnosed with LCIS when I was in my late 40’s. I took tamoxifen for 5 years. My uterus grew quite large. There was a concern of cancer but all benign polyps. Then 9 years later I was diagnosed with ILC. So the moral of the story for me was the tamoxifen did not prevent breast cancer. The breast index test shows that I would benefit from another 5 years on anastrozole but with an addition of osteoporosis diagnosis that remains to be seen.
I was diagnosed with LCIS when I was in my late 40’s. I took tamoxifen for 5 years. My uterus grew quite large. There was a concern of cancer but all benign polyps. Then 9 years later I was diagnosed with ILC. So the moral of the story for me was the tamoxifen did not prevent breast cancer. The breast index test shows that I would benefit from another 5 years on anastrozole but with an addition of osteoporosis diagnosis that remains to be seen.
I’m so sorry you have been through all this. I was just diagnosed this past July. I am still seeing my breast surgeon. But no one has indicated that I need to see an oncologist. I go to my surgeon next week and am going to ask him. Are you planning to take the other medication? I was so glad my primary care physician and rheumatologist agreed with me not taking tamoxifen. I am not sure what my care will look like without taking the medication.
Hi! How did your biopsies turn out? Did you end up needed surgery ? I was diagnosed with ADH in December. Just had surgery to remove two areas they found in right breast.
I was diagnosed with invasive lobular carcinoma in Dec. 2023. I also have PLCIS (Pleomorphic LCIS). I had a lumpectomy, but the margins were not clear. I understand that with classic LCIS this would not be a big concern, but with PLCIS, the margins must be clear. So now I am trying to decide between another lumpectomy plus radiation OR a mastectomy. (I am not considering a double mastectomy for now, although I am waiting for results of gene testing.)
I would LOVE to hear from anyone with PLCIS. It accounts for about 5% of lobular cancers, and lobular are only 10 - 15% of breast cancers, so it's rare. Thanks!
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Hi! How did your biopsies turn out? Did you end up needed surgery ? I was diagnosed with ADH in December. Just had surgery to remove two areas they found in right breast.
@nbrooks - I'm sorry that you are part of this group...not a group one chooses to be in, but glad that it is here for all of us for support. If you don't mind answering, but was your initial diagnosis LCIS, or was it an upgrade from a different initial diagnosis, like atypical lobular hyperplasia (ALH)? I have been diagnosed with ALH and was told that it will not turn into cancer, but that it is a marker for potential cancer that is lurking elsewhere. Thank you.
Hello all,
I was diagnosed with invasive lobular carcinoma in one breast — had a lumpectomy, radiation and now aromatase inhibitor therapy prescribed for 5 years. Also have LCIS in my other breast, which I was told “is not cancer,” so it was not recommended for removal. It worries me occasionally, but this was an highly respected and experienced breast surgeon at Memorial Sloan Kettering. I decided to trust her recommendation. Anyone else have an similar experience?
Thanks!
Hello! Yes this is not a group I would like to be in. And I have had so many questions. Some things haven’t gotten answers for. I had to have a biopsy on both breast. The he results from that biopsy is that I have LCIS in both breasts and ALH in my right breast. I was told this puts me at a 40% more likely chance to develop breast cancer. I live in Greenville, SC. We have a Breast Cancer Prevention Center here. I have gone to one appointment so far. The want me to go on Tamaxifin. I also have Lupus. After speaking with my Rheumatologist, I found out that Luoys increases your chance of getting Uterine Cancer as well as this medication. So I have decided not to take the medication. I will have a mammogram and MRI next once a year (every six months). I am taking this very seriously due to the information I have found and told. I did have a lumpectomy on both breast. I hope this helps. Please feel free to reach out to me with any more questions. I find it comforting to be able to speak with someone that has a similar or same diagnosis.
Nancy
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4 ReactionsI was diagnosed with LCIS in both breast and had a lumpectomy in both to remove as much as they could. I understand your Doctor is really good, but I might would seek a second opinion about the breast they didn’t remove the irregular cells. That would concern me as well.l; especially since it did show cancer in the other one.
@nbrooks i was also diagnosed in 2021 with invasive DCIS and had a lumpectomy, chemo, and then radiation. Unless someone has been through it, they don’t understand. I totally agree, we need to support each other and I appreciate your answer to my question. Please feel free to ask me any questions as well. Prayers and hugs to you 🙏
I was diagnosed with LCIS when I was in my late 40’s. I took tamoxifen for 5 years. My uterus grew quite large. There was a concern of cancer but all benign polyps. Then 9 years later I was diagnosed with ILC. So the moral of the story for me was the tamoxifen did not prevent breast cancer. The breast index test shows that I would benefit from another 5 years on anastrozole but with an addition of osteoporosis diagnosis that remains to be seen.
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4 ReactionsI’m so sorry you have been through all this. I was just diagnosed this past July. I am still seeing my breast surgeon. But no one has indicated that I need to see an oncologist. I go to my surgeon next week and am going to ask him. Are you planning to take the other medication? I was so glad my primary care physician and rheumatologist agreed with me not taking tamoxifen. I am not sure what my care will look like without taking the medication.
Hi @christylv, I'm not @gardenfairy, but I wanted to post my welcome.
Here's a list of ADH-specific discussions in the group https://connect.mayoclinic.org/group/breast-cancer/?search=ADH&index=discussions
How are you doing post-surgery? Will you require any further treatment?
I was diagnosed with invasive lobular carcinoma in Dec. 2023. I also have PLCIS (Pleomorphic LCIS). I had a lumpectomy, but the margins were not clear. I understand that with classic LCIS this would not be a big concern, but with PLCIS, the margins must be clear. So now I am trying to decide between another lumpectomy plus radiation OR a mastectomy. (I am not considering a double mastectomy for now, although I am waiting for results of gene testing.)
I would LOVE to hear from anyone with PLCIS. It accounts for about 5% of lobular cancers, and lobular are only 10 - 15% of breast cancers, so it's rare. Thanks!
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Helpful -
Hug
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