1. < Breast Cancer

Triple negative invasive lobular breast cancer

Posted by jknows @jknows, May 25 1:58pm

I have been diagnosed with triple negative invasive lobular breast cancer. I understand most lobular breast cancer is hormone positive. As a result, I am being treated according to a triple negative ductal breast cancer protocol. I am interested to know if anyone has found a unique program that addresses both the lobular aspect and the triple negative aspect of my breast cancer? Is it something they do at Mayo?

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ssmab | @ssmab | May 28 4:19pm
In reply to @dolphina3 "Watch Dr William Li on u tube he explains about intermittent fasting also I think her..." + (show)
@dolphina3

Watch Dr William Li on u tube he explains about intermittent fasting also I think her name is Monica TNB survivor on u tube and her clinic mentioned fasting 14 hours.
I think in the future they will find out how it does help . Since they don't know what causes TNBC it's worth a try.
Good luck to all.

Jump to this post

Thank you so much! I will definitely watch those videos!

REPLY
dolphina3 | @dolphina3 | May 28 12:01pm
In reply to @ssmab "Thank you for all of the information on your treatment. You have been through a lot.❤️..." + (show)
@ssmab

Thank you for all of the information on your treatment. You have been through a lot.❤️ The intermittent fasting, even if the jury is still out on that, is something that makes us feel we have some control over the situation, so I find that very helpful. Sending good health wishes to all. ❤️

Jump to this post

Watch Dr William Li on u tube he explains about intermittent fasting also I think her name is Monica TNB survivor on u tube and her clinic mentioned fasting 14 hours.
I think in the future they will find out how it does help . Since they don't know what causes TNBC it's worth a try.
Good luck to all.

REPLY
1 reply
leolion811 | @leolion811 | May 28 10:16am

Thank you very much. I have my appointment with my endocrinologist this week and I will tell her that I want to change to Zometa. You think she would know that information…

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ssmab | @ssmab | May 28 6:53am
In reply to @leolion811 "Did your oncologist say anything about Reclast instead of Zometa?" + (show)
@leolion811

Did your oncologist say anything about Reclast instead of Zometa?

Jump to this post

No, it is the same type of drug but all I know is that the Zometa version is given to people who have had a cancer diagnosis and Reclast is given to those with osteoporosis who have not had the cancer diagnosis. Zometa must have an extra component that helps us.

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leolion811 | @leolion811 | May 27 7:40pm
In reply to @ssmab "I was diagnosed in December 2022 with triple negative Invasive Lobular stage 1a in one breast..." + (show)
@ssmab

I was diagnosed in December 2022 with triple negative Invasive Lobular stage 1a in one breast and hormone receptor positive Invasive Ductal stage 1a in the other breast. I had a bilateral mastectomy at Mayo. My margins and lymph nodes were clear and so they didn't think traditional chemo would be of benefit for me. I am considered to be in Remission. If the disease has spread then it's a different story and chemo is in order. I am on Tamoxifen for the hormone receptor positive Invasive Ductal tumor. I am 70 and have osteoporosis so I am having infusions of Zometa (an osteoporosis drug that is also given to cancer patients with metastatic bone disease) every 6 months for 3 years. My oncologist said they found that women who have had breast cancer and have been on Zometa have a higher 10 year survival rate than those who have not had Zometa. When I heard that I was ready to start that infusion! It was considered "Chemo Care" on the information I received when getting my 1st infusion at Mayo. Our diagnosis is scary but with daily prayer and optimistic self talk I am doing really well and I am wishing the best for you! Our mindset has a lot to do with our health so let's really believe in our hearts that we will be survivors! We can and will be!

Jump to this post

Did your oncologist say anything about Reclast instead of Zometa?

REPLY
1 reply
ssmab | @ssmab | May 27 6:38am

Thank you for all of the information on your treatment. You have been through a lot.❤️ The intermittent fasting, even if the jury is still out on that, is something that makes us feel we have some control over the situation, so I find that very helpful. Sending good health wishes to all. ❤️

REPLY
1 reply
dolphina3 | @dolphina3 | May 27 5:12am
In reply to @ssmab "You are being treated at a great place so that is good. My only real treatment..." + (show)
@ssmab

You are being treated at a great place so that is good. My only real treatment besides the double mastectomy for the Invasive Lobular is the Zometa infusion that is also an osteoporosis drug. Since it turns out that women who have had breast cancer and and have been on Zometa for osteoporosis have a higher 10 year survival rate than women who have had bc and didn’t take Zometa, then that drug is used to help prevent against recurrence. I’m not sure if you don’t have any osteoporosis at all if they could use that for you. You could certainly ask your oncologist at MD Anderson.

Because I had a double mastectomy ( since I had a different type of cancer in each breast and I also had LCIS, which is a marker for breast cancer, a double mastectomy was the best thing for me to do) and my margins and lymph nodes were clear, and the lobular was stage 1a the Oncologist didn’t think chemo would do anything. Was your triple negative lobular in the lymph nodes? If there is node involvement or it has gone further then they try chemo.

I am eating a lot of vegetables and fruit , especially broccoli which I have read is an anti cancer vegetable. I have been limiting sweets which I have read can help and I have been doing a 30 minute brisk walk almost every day. Those are other ways we can help ourselves. I also do the optimistic self talk every day for 15 minutes. I do believe our thoughts have a great impact on our health. I say “ I am going to stay in remission, I am going to stay cancer free, I am a survivor and I will remain a survivor. I will be just fine.” I repeat that over and over for 15 minutes. Every single day. And I pray a lot!

I have recently read that doing “intermittent fasting” of 13 hours a night ( that’s finishing dinner say by 7pm and not eating any food for breakfast till 13 hours later or in this case, 8 am (or however you want to have the 13 hour fast work for you) may help to prevent breast cancer recurrence. I am going to ask the oncologist at my next Mayo appt in July if there is any validity to this intermittent fasting of 13 hours in preventing recurrence. Till I see him I am doing it. I have been doing it since I read about it 3 weeks ago, and since it doesn’t hurt us, I figure why not do it. It has been very easy to stick to it and I feel it may help me. So why not? You could ask about it at MD Anderson and see what they say.

I know it’s scary having lobular that is triple negative but I have decided that I can do my very best to stay as healthy and optimistic as I can and I feel that will really help me. Keep believing that you will be a survivor. We can be and we will be.❤️

Jump to this post

I am glad you are doing well. I had Triple Negative lobular 2A no lymph nodes involved but large tumor. They gave me fec chemo and then taxol. Then masectomy and 5 weeks radiation. After that xeloda for 9 months and I also have Zomeda every 6 months for 3 years.
I also fast between 14 and 16 hours almost every day. I also walk at least 150 minutes a week they say this helps recurrence as well. I eat vegs, lots of fruits, and drink green tea. Hopefully this will help maintain remission. Good luck to everyone on this journey and best wishes.

REPLY
ssmab | @ssmab | May 26 9:50pm
In reply to @jknows "What kind of treatment are you receiving? I am at MD Anderson in Houston but feeling..." + (show)
@jknows

What kind of treatment are you receiving? I am at MD Anderson in Houston but feeling like I am being treated as triple negative but without focus on the fact I have lobular.

Jump to this post

You are being treated at a great place so that is good. My only real treatment besides the double mastectomy for the Invasive Lobular is the Zometa infusion that is also an osteoporosis drug. Since it turns out that women who have had breast cancer and and have been on Zometa for osteoporosis have a higher 10 year survival rate than women who have had bc and didn’t take Zometa, then that drug is used to help prevent against recurrence. I’m not sure if you don’t have any osteoporosis at all if they could use that for you. You could certainly ask your oncologist at MD Anderson.

Because I had a double mastectomy ( since I had a different type of cancer in each breast and I also had LCIS, which is a marker for breast cancer, a double mastectomy was the best thing for me to do) and my margins and lymph nodes were clear, and the lobular was stage 1a the Oncologist didn’t think chemo would do anything. Was your triple negative lobular in the lymph nodes? If there is node involvement or it has gone further then they try chemo.

I am eating a lot of vegetables and fruit , especially broccoli which I have read is an anti cancer vegetable. I have been limiting sweets which I have read can help and I have been doing a 30 minute brisk walk almost every day. Those are other ways we can help ourselves. I also do the optimistic self talk every day for 15 minutes. I do believe our thoughts have a great impact on our health. I say “ I am going to stay in remission, I am going to stay cancer free, I am a survivor and I will remain a survivor. I will be just fine.” I repeat that over and over for 15 minutes. Every single day. And I pray a lot!

I have recently read that doing “intermittent fasting” of 13 hours a night ( that’s finishing dinner say by 7pm and not eating any food for breakfast till 13 hours later or in this case, 8 am (or however you want to have the 13 hour fast work for you) may help to prevent breast cancer recurrence. I am going to ask the oncologist at my next Mayo appt in July if there is any validity to this intermittent fasting of 13 hours in preventing recurrence. Till I see him I am doing it. I have been doing it since I read about it 3 weeks ago, and since it doesn’t hurt us, I figure why not do it. It has been very easy to stick to it and I feel it may help me. So why not? You could ask about it at MD Anderson and see what they say.

I know it’s scary having lobular that is triple negative but I have decided that I can do my very best to stay as healthy and optimistic as I can and I feel that will really help me. Keep believing that you will be a survivor. We can be and we will be.❤️

REPLY
1 reply
jknows | @jknows | May 26 2:08pm
In reply to @ssmab "Yes I am. I see the oncologist again in July. If something changes in my treatment..." + (show)
@ssmab

Yes I am. I see the oncologist again in July. If something changes in my treatment I will post here. I live in a smaller city in Michigan and my local Internist ( who had breast cancer 6 years ago herself) said she tells all of her patients who have triple negative bc to go to the University of Michigan for treatment or to Mayo. So if you are not near a major well known Hospital, you might want to investigate going elsewhere for treatment. Thinking of you and I will say a prayer for you❤️

Jump to this post

What kind of treatment are you receiving? I am at MD Anderson in Houston but feeling like I am being treated as triple negative but without focus on the fact I have lobular.

REPLY
1 reply
ssmab | @ssmab | May 26 9:29am
In reply to @jknows "Are you receiving treatment at Mayo?" + (show)
@jknows

Are you receiving treatment at Mayo?

Jump to this post

Yes I am. I see the oncologist again in July. If something changes in my treatment I will post here. I live in a smaller city in Michigan and my local Internist ( who had breast cancer 6 years ago herself) said she tells all of her patients who have triple negative bc to go to the University of Michigan for treatment or to Mayo. So if you are not near a major well known Hospital, you might want to investigate going elsewhere for treatment. Thinking of you and I will say a prayer for you❤️

REPLY
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