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.

I was diagnosed w/tnbc stage 4 on 3/22/23. It was a recurrence. The tumor has spread to my lung and chest wall and bones . I was told my doctor that I cant have surgery to remove . I also had positive breast cancer stage 3 in 2014 and went remission at the year after I had surgery, chemo, and radiation. last May, I had chemo Enhertu for 6 month then the tumors started grow again. Now I am using chemo Trodelvy for near one months now. I will find out if it
is working on my next scan test.

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@louri

I was diagnosed with TNBC in November 2019, stage 1b, 1.7 cm and no lymph node involvement. I had a lumpectomy, chemo and then radiation. This was protocol the time. I was deemed in remission until last week. December 15th I had my yearly mammogram which required additional imaging. More scans, ultrasound and biopsy determined I have a local reoccurrence. I am now faced with the decision of having another lumpectomy with 3 weeks radiation, I did not have full amount of radiation the first time, or mastectomy. On one hand I think lumpectomy and save mastectomy option in case it returns again but on the other hand I don’t want multiple surgeries. If I did go mastectomy I would go flat. I am 63 and any advice, suggestions would be appreciated.

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I was diagnosed TN in September 2021, had a double mastectomy the following month, and have not had regrets about my decision. At some point I may try some kind of minimal padded-bra type thing but so far I have not done anything like that nor felt the need. It takes a little while to adjust to the change in how my clothes fit; I was not shapely before the surgery, so most of the adaptation has just been in my own mind. I was 68 at the time of diagnosis, and I'm 71 now. I wanted to avoid multiple surgeries, and I like being able to know that everything I see and feel is actually my own body; I feel more aware of my own condition and health with nothing external in the way. The good thing about TN is avoiding so many complicated decisions and side-effects of the treatments for the positive-types of breast cancer. The negative thing is that there's a big empty space where you are on your own to stay distracted and avoid thinking of that higher chance of a return cancer in those first several years.
Frankly, I didn't want to do multiple breast surgeries of ANY kind, either multiple lumpectomies, mastectomies, or the multi-step, drawn out reconstruction processes I heard about. If my life is to be shortened by this disease--and I hope it's not--I want to spend as little of it as possible anticipating or recuperating from surgery. I'm sure you will be fine, and will be comfortable with your decision once you have settled on your own priorities going forward!!

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@marywei

I was diagnosed w/tnbc stage 4 on 3/22/23. It was a recurrence. The tumor has spread to my lung and chest wall and bones . I was told my doctor that I cant have surgery to remove . I also had positive breast cancer stage 3 in 2014 and went remission at the year after I had surgery, chemo, and radiation. last May, I had chemo Enhertu for 6 month then the tumors started grow again. Now I am using chemo Trodelvy for near one months now. I will find out if it
is working on my next scan test.

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Welcome @marywei. You may also be interested in joining this discussion:
- Has anyone been given Trodelvy?
https://connect.mayoclinic.org/discussion/has-anyone-been-given-trodelvy/
How are the side effects with Trodelvy for you?

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@lnlowe70

I was diagnosed TN in September 2021, had a double mastectomy the following month, and have not had regrets about my decision. At some point I may try some kind of minimal padded-bra type thing but so far I have not done anything like that nor felt the need. It takes a little while to adjust to the change in how my clothes fit; I was not shapely before the surgery, so most of the adaptation has just been in my own mind. I was 68 at the time of diagnosis, and I'm 71 now. I wanted to avoid multiple surgeries, and I like being able to know that everything I see and feel is actually my own body; I feel more aware of my own condition and health with nothing external in the way. The good thing about TN is avoiding so many complicated decisions and side-effects of the treatments for the positive-types of breast cancer. The negative thing is that there's a big empty space where you are on your own to stay distracted and avoid thinking of that higher chance of a return cancer in those first several years.
Frankly, I didn't want to do multiple breast surgeries of ANY kind, either multiple lumpectomies, mastectomies, or the multi-step, drawn out reconstruction processes I heard about. If my life is to be shortened by this disease--and I hope it's not--I want to spend as little of it as possible anticipating or recuperating from surgery. I'm sure you will be fine, and will be comfortable with your decision once you have settled on your own priorities going forward!!

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We are close in age and diagnosis and my thought process was very similar.
I just wanted to heal and get on with it. Wishing both of us good health and sunny days.

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@callalloo

I think there's a difference between how aggressive a cancer is and its likelihood of recurrence. The article linked below gives some clarification. As with anything related to breast cancer, treatment options and plans are changing all the time as new tools become available or improved. So keep in mind that any statistics collected over time, say 10 years or so, can include data on earlier patients who had different more-limited treatment options vailable at the time. And might include patients whose cancer was found later than they are now since older women did not routinely have mammograms in the past.

Basically most newly-discovrered breast cancers today have better overall prognosis in general because of advances in treatment options. I like to stress this as it's both true and encouraging when considering 'statistics.'
https://www.verywellhealth.com/triple-negative-breast-cancer-prognosis-4778440

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Callalloo,
thank you for sharing this article. I have been avoiding information that I did not want to handle. Some of my avoidance was knowing some of these realities. I am a retired oncology nurse and shared this with some of my nursing friends who have been involved from day one.
All the best to you.
Robin

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@cindyhikes

After doing a bit more research, I discovered a very helpful tool published (and available for public use) on the NHS web site (NHS is the UK's National Health Service - so highly reputable). My career was in software and systems with mathematics, I also reviewed the technical approach notes and believe the tool has been well-designed and is likely pretty solid. It may be somewhat weaker for TNBC because it represents a fairly small proportion of cases, so the data used to confirm the results might not be as solid (there could be some minor bias due to having just a little over 2,000 patients with TNBC for their confirmation data pool). So we shouldn't assume it is perfect. But it is likely fairly good at helping give some useful guidance.

This tool is used by UK doctors and patients to help understand treatment options and their relative benefits. It doesn't necessarily map directly for patients here, especially if they go directly into neo-adjuvant chemo before mastectomy. And not all treatment options are captured in this tool. So none of us should use it without consulting with a qualified cancer team. But it might help a bit to have this insight as we're considering options for treatment.

I also recently switched to a different cancer center (won't get into all of the reasons), but feel this center is far better at providing the kind of individualized and supportive care I need. And when I mentioned having looked at this NHS tool, the surgeon said their breast cancer team often uses it to help gain some clarity into relative benefits of different treatment options, and then to help inform their patients about those options.

Here's the link if you want to look at it. Caveat: It really is best if you are working with your provider to make sure you haven't missed or misunderstood some of the inputs. If you use it knowing you may not have those exactly right, and are willing to look at other possible inputs that might apply to your situation after all of the lab analysis is complete (post-mastectomy), then you can still use it as long as you realize it is giving you a general idea, not something solid/definitive.
https://breast.predict.nhs.uk

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Interesting. All coincides with all info from oncologist and surgeon.
I could not find a Ki-67 result in my chart.

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