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Triple Negative Breast Cancer: What treatments are you having?

Posted by thielmann1 @thielmann1, Dec 9, 2021

I have just been diagnosed with Triple Negative Breast Cancer after having Estrogen Positive Breast Cancer for 21 years. Is anyone familiar with this diagnosis and treatment that you are having for it?

Interested in more discussions like this? Go to the Breast Cancer Support Group.

sharonemma | @sharonemma | Aug 1, 2022
In reply to @cindyhikes "The rate of reoccurrence in the first 5 years with TNBC will depend a lot on..." + (show)
@cindyhikes

The rate of reoccurrence in the first 5 years with TNBC will depend a lot on the details from the pathology report, from the mastectomy. The tool linked above (and again here: https://breast.predict.nhs.uk), from the UK's National Health Service will give you some idea if you put in all the data from your pathology and the treatment path you chose. (Reoccurrence rate is the difference between survival rate and the deaths from other causes rate, the dotted yellow line on the graph.)

We will all be living with uncertainty, though. Everyone does whether they realize it or not. For us, it is simply undeniable. And that can be hard to deal with, emotionally, for anyone.

My wish for anyone going thru this is that they can find a way to be ok with uncertainty. I had Hodgkin's at age 35 and wasn't equipped to handle the uncertainty then. It really tore me apart, for several years after completing treatment.

Just listened to the first part of a podcast where they were discussing uncertainty, more broadly, and how to come to terms with it through meditation. I've tried but never really felt ok doing meditation, but I got some insight from listening that I think will be helpful for coping with the next few years (assuming I make it thru a few more). Maybe you will find it helpful, too. Here's the link: https://www.nytimes.com/2022/01/25/opinion/ezra-klein-podcast-ruth-ozeki.html

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Thank you for the reply and link. It would seem that reoccurrence rate is the same rate or less than getting breast cancer in your lifetime which is 12% ? I guess that is how I’m looking at it. Thank you so much !!

REPLY
1 reply
callalloo | @callalloo | Aug 1, 2022
In reply to @cindyhikes "The rate of reoccurrence in the first 5 years with TNBC will depend a lot on..." + (show)
@cindyhikes

The rate of reoccurrence in the first 5 years with TNBC will depend a lot on the details from the pathology report, from the mastectomy. The tool linked above (and again here: https://breast.predict.nhs.uk), from the UK's National Health Service will give you some idea if you put in all the data from your pathology and the treatment path you chose. (Reoccurrence rate is the difference between survival rate and the deaths from other causes rate, the dotted yellow line on the graph.)

We will all be living with uncertainty, though. Everyone does whether they realize it or not. For us, it is simply undeniable. And that can be hard to deal with, emotionally, for anyone.

My wish for anyone going thru this is that they can find a way to be ok with uncertainty. I had Hodgkin's at age 35 and wasn't equipped to handle the uncertainty then. It really tore me apart, for several years after completing treatment.

Just listened to the first part of a podcast where they were discussing uncertainty, more broadly, and how to come to terms with it through meditation. I've tried but never really felt ok doing meditation, but I got some insight from listening that I think will be helpful for coping with the next few years (assuming I make it thru a few more). Maybe you will find it helpful, too. Here's the link: https://www.nytimes.com/2022/01/25/opinion/ezra-klein-podcast-ruth-ozeki.html

Jump to this post

Ah, the old 'known knowns, the known unknowns and the unknown unknowns.'

For a lot of wonderful things that occur, there were the minutes before it happened where there was no hint that it would occur. That includes medical breakthroughs, a powerful new insight into something the body does, the minutes before two people meet whose meeting leads to the birth of a new baby on the planet. My brother used to like to think about what he called 'the minutes just before a miracle' which was his favorite part in any true story. We used to tease him about it but it was, in an odd way, an appreciation of uncertainty and paying more attention to life's clues.

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callalloo | @callalloo | Aug 1, 2022
In reply to @sharonemma "Thank you for the reply and link. It would seem that reoccurrence rate is the same..." + (show)
@sharonemma

Thank you for the reply and link. It would seem that reoccurrence rate is the same rate or less than getting breast cancer in your lifetime which is 12% ? I guess that is how I’m looking at it. Thank you so much !!

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I looked at cancer that way too 😏. Someone posted once that she would be very scared by a 10% chance of getting breast and I thought to myself that 10% is better that the 1 in 8 odds that women already face in the U.S. for breast cancer over a lifetime. That's the elephant in the parlor...

A corporate recruiter friend used to say that, when one has a good job, the personal unemployment rate is 0% and when unemployed the personal unemployment rate is 100%. His point was, ignore (not deny, just don't focus on) the statistics that are scary when they're of no value personally and concentrate on the personal statistics one can improve and move forward either way.

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lnlowe70 | @lnlowe70 | Oct 5, 2022
In reply to @medical01 "The clinical manifestation of triple-negative breast cancer is an aggressive course, with a higher risk of..." + (show)
@medical01

The clinical manifestation of triple-negative breast cancer is an aggressive course, with a higher risk of distant metastasis, a higher chance of visceral metastasis than bone metastasis, and a higher chance of brain metastasis. The risk of distant metastasis of triple-negative breast cancer reaches its peak at 3 years, and may decrease thereafter. The median tumor size of triple-negative breast cancer is 2 cm, and 50% have lymph node metastasis. The histological grade of this type of breast cancer is mostly grade 3, and the proportion of cell proliferation is relatively high.

Treatment
There are no specific treatment guidelines for triple-negative breast cancer. Therefore, its treatment is generally carried out according to the conventional standard treatment of breast cancer.
1. Chemotherapy
Compared with other types of breast cancer, chemotherapy is more effective for triple-negative breast cancer, but if it is just a conventional standard treatment, the prognosis is still very poor.
2. Adjuvant chemotherapy
FEC sequential docetaxel chemotherapy has a better response. Taxanes have a certain effect on triple-negative breast cancer. Platinum drugs may be more effective in triple-negative breast cancer. Cisplatin neoadjuvant chemotherapy is quite effective.

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Hi, @medical01 Can you tell me where this information is from? I had surgery and chemotherapy (taxotere and cytoxan) ending the last of January 2022 after a triple-negative diagnosis a year ago. I am trying to be realistic going forward, which means finding out the full extent of what I *can* know about risks and statistics while still nurturing a life-affirming attitude so I can make the best use of my time every day. While I can't know my own future health, it does help my perspective to to be as aware as possible of the medical facts as they stand at the present time. That's the long way around the core of my question, which is this: I am just wondering where your information is from. As I have searched to find out prognosis statistics on triple-negative breast cancer, I have found Mayo's online information to be the most straightforward and least patronizing, which I appreciate as a patient. (I live in Washington state, so I am unbiased in terms of my care team having no affiliation with Mayo!) But you have some details in this write-up I have not seen before, although admittedly it has been a couple of months since I have done intensive searching--and besides, I am a layperson and thus I don't have quite the same access to medical details as a professional! Anyway, I appreciate what you have shared and would be interested in what I can find out further. For instance: One question I'd ask if you are "in the business" is what's the backstory on Zometa (zoledronic acid), which I am being given every six months for two years following the end of my chemo. My oncologist says it will reduce the chance of a metastasis by 1%. I'll take any reduction, but I am wondering if the Zometa's effect is primarily seen in reducing the likelihood of cancer in bone instead of in other areas.

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1 reply
dolphina3 | @dolphina3 | Feb 3, 2023
In reply to @markagottlieb "I’m 73 and was diagnosed with triple negative 7 years ago. It is a very aggressive..." + (show)
@markagottlieb

I’m 73 and was diagnosed with triple negative 7 years ago. It is a very aggressive cancer. I have no signs of my cancer returning. I would listen to my doctor if I was diagnosed at 80. My mother lived to be 95, so if I felt healthy at 80, I would do chemo again, maybe one of the newer drugs.

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I agree with you about chemo. If you are healthy chemo is doable. I was 68 when diagnosed after testing they said I was okay for chemo and it wasn't that bad. They give you pills for nausea and you will feel fatigued. I would have chemo again if I have a recurrence. Mine was stage 2A no lymph nodes size 5.8 cm.
Good luck and best wishes for all going thru this journey.

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psd | @psd | Feb 12, 2023

Seeking info on PEMF treatments but have expander. Confused by info I've found on various sites, some suggest no issue, others advise not to have this. Looking for answer.
Thank you, PSD

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1 reply
Mentor
Chris, Volunteer Mentor | @auntieoakley | Feb 14, 2023
In reply to @psd "Seeking info on PEMF treatments but have expander. Confused by info I've found on various sites,..." + (show)
@psd

Seeking info on PEMF treatments but have expander. Confused by info I've found on various sites, some suggest no issue, others advise not to have this. Looking for answer.
Thank you, PSD

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I don’t know much about these magnetic treatments, but there is a page where you can connect with other TNBC patients here on connect.
This diagnosis carries with it shock and grief, and I hope that you have a good support system. Connect can help with that. Here is a link.
https://connect.mayoclinic.org/discussion/triple-negative-breast-cancer/
Have you discussed treatments with your doctor? Are you looking to PEMF as an additional treatment?

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clarke | @clarke | Feb 21, 2023

What meds for infusion were you given for stage 4 tnbc ?

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 25, 2023
In reply to @clarke "What meds for infusion were you given for stage 4 tnbc ?" + (show)
@clarke

What meds for infusion were you given for stage 4 tnbc ?

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Welcome @clarke, I moved your message to this existing discussion:
- Triple Negative Breast Cancer: What treatments are you having? https://connect.mayoclinic.org/discussion/triple-negative-breast-cancer/

I did this so you can read through some of the previous posts and connect easily with other women living with triple negative breast cancer like @thielmann1 @olg1 @imlistening21 @lindaheard @mlk @gbnana @kk57 @leolion811 @seathink @jjhhdd @markagottlieb @kimann @sharonemma @asa13 and more.

Clarke, can you share more about you? What treatment is being suggested for you?

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mdr3 | @mdr3 | Feb 26, 2023
In reply to @lnlowe70 "Hi, @medical01 Can you tell me where this information is from? I had surgery and chemotherapy..." + (show)
@lnlowe70

Hi, @medical01 Can you tell me where this information is from? I had surgery and chemotherapy (taxotere and cytoxan) ending the last of January 2022 after a triple-negative diagnosis a year ago. I am trying to be realistic going forward, which means finding out the full extent of what I *can* know about risks and statistics while still nurturing a life-affirming attitude so I can make the best use of my time every day. While I can't know my own future health, it does help my perspective to to be as aware as possible of the medical facts as they stand at the present time. That's the long way around the core of my question, which is this: I am just wondering where your information is from. As I have searched to find out prognosis statistics on triple-negative breast cancer, I have found Mayo's online information to be the most straightforward and least patronizing, which I appreciate as a patient. (I live in Washington state, so I am unbiased in terms of my care team having no affiliation with Mayo!) But you have some details in this write-up I have not seen before, although admittedly it has been a couple of months since I have done intensive searching--and besides, I am a layperson and thus I don't have quite the same access to medical details as a professional! Anyway, I appreciate what you have shared and would be interested in what I can find out further. For instance: One question I'd ask if you are "in the business" is what's the backstory on Zometa (zoledronic acid), which I am being given every six months for two years following the end of my chemo. My oncologist says it will reduce the chance of a metastasis by 1%. I'll take any reduction, but I am wondering if the Zometa's effect is primarily seen in reducing the likelihood of cancer in bone instead of in other areas.

Jump to this post

I am a firm believer in Zometa (let me just say that out of the gate). I had the attitude that I would do anything to increase the risk of recurrence, anytime, anywhere (and that's one of them). The major downside is the inability to receive dental care while on it (at least around here). I finished my 6th infusion 6 months ago, and will be going to a med/dental hospital for overdue oral surgery (secondary to the chemo I had in 2019). My oncologist wanted me to wait a full 6 mos. Yes, Zometa has recently been shown to have tumor suppression properties in the bone. Initially it was prescribed for bone strength.

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