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.

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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Profile picture for jjhhdd @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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Profile picture for jjhhdd @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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Profile picture for jjhhdd @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).

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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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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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Profile picture for callalloo @callalloo

I don't know which companies, if any, offer genetic testing that could provide valuable information about your situation. Buy please research that so, when you have surgery, tissue samples will be held for submission to a genetics testing firm. I'm a big believer in using any avenue to gain valuable information and the clinical biopsies and such, while important, can't measure every variable.

Also is it possible to make an appointment with another oncologist in your area while you wait for an opening at Mayo? You can always cancel an appointment if you need to and someone else will be grateful to grab it who also might be dealing with cancer for the first time and otherwise unable to see someone fast.

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Thank you for the suggestion about trying to arrange genetic testing of tissue samples from the mastectomy. I'd started wondering about that, thinking it might be a good thing to see if I could arrange it. If I can get into Mayo before the surgery, hopefully they could help me navigate that.

A second opinion is a good idea. I'll see if I can arrange it. Guess I've been hoping that's what Mayo would be, if I can't get there in time to have them be my primary oncology team.

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Profile picture for sharonemma @sharonemma

I think immunotherapy is important for TNBC since it doesn’t respond to hormone treatments. I’m on that and chemo for 1/week for 12 weeks to get a complete result (no cancer detected) before surgery. I know everyone’s path is different though. I am getting my treatments at Mayo. I think their standard for a tumor size T3 not spread is AC and immunotherapy for 12 weeks. Then another combo for another 3 months for a total of 6 months before surgery. I am in I Spy 2 study too though which is a d escalation less harsh path. Get all your options, take someone with you to take notes. Ask all the questions for each treatment option. When you do a study, they have to redo biopsies and MRI’s and wait for your drugs to get selected (2 weeks in my case) so it delayed treatment start by 3 weeks which was nerve racking and not for everyone. Let me know if you have questions!!

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With prior cancer, it may change the treatment options as well.

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I think immunotherapy is important for TNBC since it doesn’t respond to hormone treatments. I’m on that and chemo for 1/week for 12 weeks to get a complete result (no cancer detected) before surgery. I know everyone’s path is different though. I am getting my treatments at Mayo. I think their standard for a tumor size T3 not spread is AC and immunotherapy for 12 weeks. Then another combo for another 3 months for a total of 6 months before surgery. I am in I Spy 2 study too though which is a d escalation less harsh path. Get all your options, take someone with you to take notes. Ask all the questions for each treatment option. When you do a study, they have to redo biopsies and MRI’s and wait for your drugs to get selected (2 weeks in my case) so it delayed treatment start by 3 weeks which was nerve racking and not for everyone. Let me know if you have questions!!

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Profile picture for cindyhikes @cindyhikes

I am nearly 68, but had previous Hodgkins lymphoma at age 35, with radiation and chemo. So I am not able to have radiation again. My body has been declining much more quickly than my 67 year age implies (at least some of my health issues are definitely due to the treatments 30+ years ago).

I'm encouraged to hear what your oncologist recommended. I wish there was some data that could tell me it is worth the mastectomy alone (which is also not easy - but easier on the body than the chemo for TNBC). Without your info, I was feeling pretty lost - that choosing that path might really be just wishful thinking. But if it is recommended by Alberta's medical community for those who are older, that means there must be some real benefit.

Being ok with a decision is incredibly important when on a journey as unsettling and uncertain as this one. I'm glad you are there. Hopefully this will help me get there, too.

Thank you so much for sharing your path. Good wishes for continued peace of mind and health to you, too!

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I don't know which companies, if any, offer genetic testing that could provide valuable information about your situation. Buy please research that so, when you have surgery, tissue samples will be held for submission to a genetics testing firm. I'm a big believer in using any avenue to gain valuable information and the clinical biopsies and such, while important, can't measure every variable.

Also is it possible to make an appointment with another oncologist in your area while you wait for an opening at Mayo? You can always cancel an appointment if you need to and someone else will be grateful to grab it who also might be dealing with cancer for the first time and otherwise unable to see someone fast.

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