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?

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@cindyjoan

I was diagnosed with Stage 3b triple negative Invasive Ductal carcinoma with a ki-67 of 95% in April. Started 6 months of chemo in May, then surgery and radiation. Then a year of immunotherapy. I was surprised to read the comment above that there was a high recurrence of triple negative because I read an article recently that there was a lower recurrence in triple negative. Unfortunately I can't remember where the article was from.

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TNBC is most aggressive breast cancer out there. I am dealing with a reoccurrence only after 2 and 1/2 years after my original TNBC.

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I was diagnosed with Stage 3b triple negative Invasive Ductal carcinoma with a ki-67 of 95% in April. Started 6 months of chemo in May, then surgery and radiation. Then a year of immunotherapy. I was surprised to read the comment above that there was a high recurrence of triple negative because I read an article recently that there was a lower recurrence in triple negative. Unfortunately I can't remember where the article was from.

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@callalloo

I entered the data for my situation and the algorithm yielded an 84.6% survival at 5 years for 'surgery only.' Adding 5 years of hormone therapy only changed that number to 84.8%. Which is only an insignificant 0.2% differential. I'm older so that might account for the algorithm result. But I find it interesting as I took the 'surgery only' path.

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I should add that, while 84.6% odds of survival over 5 years for the 'surgery only' option I took are interesting, I also had the OncotypeDX genetic assay and that yielded 95% odds of no locoregional recurrence within 9 years which was more reassuring.

Speaking of algorithms, I entered my DEXA score in the FRAX calculator and, if I lose 10 pounds, my risk of fracture goes up! Take all these things with a grain of salt as you are unique, and not an average, but good results are still welcome.

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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

Jump to this post

I entered the data for my situation and the algorithm yielded an 84.6% survival at 5 years for 'surgery only.' Adding 5 years of hormone therapy only changed that number to 84.8%. Which is only an insignificant 0.2% differential. I'm older so that might account for the algorithm result. But I find it interesting as I took the 'surgery only' path.

REPLY

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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@jjhhdd

I am the 80 yr old with invasive carcinoma, triple negative breast cancer. After refusing both chemo and radiation last March, I decided to have four weeks of radiation. I don't know if I really need it, but after talking to others that had four weeks of radiation and very little, if any, problems, I decided to be safe and not be second- guessing myself. I begin my first treatment next week. Because of my general good health, my doctor and other women have told me I will not
be sorry.

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I agree with all the other women. If your general health is good it should be event free and you won’t have to look back and wonder if you should have gone for it. Some people have some fatigue with radiation so rest if you need to and this will pass. I am with you in thought.
Do you have someone who can take you to radiation and help you with chores if necessary?

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@jjhhdd

I am the 80 yr old with invasive carcinoma, triple negative breast cancer. After refusing both chemo and radiation last March, I decided to have four weeks of radiation. I don't know if I really need it, but after talking to others that had four weeks of radiation and very little, if any, problems, I decided to be safe and not be second- guessing myself. I begin my first treatment next week. Because of my general good health, my doctor and other women have told me I will not
be sorry.

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Good luck 🍀

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@jjhhdd

I was diagnosed with invasive carcinoma, triple negative breast cancer in January. I had a lumpectomy in February. I had clear margins and clear lymph nodes. Because I am 80 years old I didn't feel it was right for me to get chemo or radiation. The study which I read ( JAMA Oncology) suggesting treatment, were done on much younger women (average age 51).

Jump to this post

I am the 80 yr old with invasive carcinoma, triple negative breast cancer. After refusing both chemo and radiation last March, I decided to have four weeks of radiation. I don't know if I really need it, but after talking to others that had four weeks of radiation and very little, if any, problems, I decided to be safe and not be second- guessing myself. I begin my first treatment next week. Because of my general good health, my doctor and other women have told me I will not
be sorry.

REPLY

Here's the list of articles relating to breast cancer on the American Society of Clinical Oncology. And a link to the editorial and board members.
https://ascopost.com/topics/solid-tumors/breast-cancer-highlights/
https://ascopost.com/editorial-board/

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I tripped over a website for the American Society of Clinical Oncology that has a lot of articles on evolving current thinking and treatment for different breast cancers.

Here's one article that also mention some genetic testing firms I'd not yet heard of that might be worth people researching to see if they do testing that would be personally applicable.

ASCO Refines Guidance on Using Biomarkers for Adjuvant Endocrine and Chemotherapy in Early-Stage Breast Cancer
https://ascopost.com/issues/june-10-2022/asco-refines-guidance-on-using-biomarkers-for-adjuvant-endocrine-and-chemotherapy-in-early-stage-breast-cancer/

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