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TNBC stage Ib: Wondering if it will come back?

Posted by gramgramems @gramgramems, Aug 11 4:04pm

Diagnosed with triple negative breast cancer after a new density on a mammogram. Double mastectomy March 2024 chemo then reoccurrence in the surgical flap in September 20 24, radiation 33 treatments and chemo and now immunotherapy. Senterea went from 0.02 to 0.00. Still wondering if it will come back.

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roberta75 | @roberta75 | Aug 13 9:29pm
In reply to @seathink "Hi @kedisaacs , I had a single mastectomy and a DIEP Flap and TNBC -- the..." + (show)
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Hi @kedisaacs , I had a single mastectomy and a DIEP Flap and TNBC -- the scans I get are the blood scans, a Pet CT yearly, and a chest MRI and a left mammo yearly, alternated with each other so it's either MRI or mammo every 6 months.

I should imagine you could maybe alternate a CT or PetCT with an MRI with a double mastectomy, so you are getting scanned twice yearly, if they say no mammos needed.

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Where are you getting your care?

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gramgramems | @gramgramems | Aug 14 7:17am

Local hospital after consultation with Cleveland Clinic

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sschafer70 | @sschafer70 | Aug 14 7:36am

I feel for you, I was diagnosed with TNBC in Aug 2023, after chemo and Keytruda I had a double mastectomy in June 2024, then reconstruction, then another round of Keytruda, then in March of this year the oncologist gave me another CT scan right after finishing the Keytruda and yup, it was back (if not the same tumor, oncologist and I are suspicious about that)...after another surgery and 30 radiation treatments I am now on Capecitabine. I had more side-effects from the Keytruda then the Chemo I was and am on currently. Right now they are doing CT scans with contrast. I have one coming up next Wednesday and am just hoping that everything looks good.

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roberta75 | @roberta75 | Aug 14 7:52am
In reply to @sschafer70 "I feel for you, I was diagnosed with TNBC in Aug 2023, after chemo and Keytruda..." + (show)
Profile picture for sschafer70 @sschafer70

I feel for you, I was diagnosed with TNBC in Aug 2023, after chemo and Keytruda I had a double mastectomy in June 2024, then reconstruction, then another round of Keytruda, then in March of this year the oncologist gave me another CT scan right after finishing the Keytruda and yup, it was back (if not the same tumor, oncologist and I are suspicious about that)...after another surgery and 30 radiation treatments I am now on Capecitabine. I had more side-effects from the Keytruda then the Chemo I was and am on currently. Right now they are doing CT scans with contrast. I have one coming up next Wednesday and am just hoping that everything looks good.

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Oh my, what stage were you at when first diagnosed? You have been through so much. You are a strong, brave person. All of you on this link just keep moving forward.

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drummergirl | @drummergirl | Aug 14 8:02am

Originally someplace else, but now Mayo. A lot may depend on your insurance coverage and pathology/surgical details.
TNBC needs more monitoring in my opinion.

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roberta75 | @roberta75 | Aug 14 10:21am
In reply to @drummergirl "Originally someplace else, but now Mayo. A lot may depend on your insurance coverage and pathology/surgical..." + (show)
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Originally someplace else, but now Mayo. A lot may depend on your insurance coverage and pathology/surgical details.
TNBC needs more monitoring in my opinion.

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Thanks for your information. What a journey.

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gramgramems | @gramgramems | Aug 14 7:46pm
In reply to @roberta75 "Thanks for your information. What a journey." + (show)
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Thanks for your information. What a journey.

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Stay strong💕

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sschafer70 | @sschafer70 | Aug 15 6:44am

We just have to deal with it in the best way we can, in our own way. I am also a Type 1 diabetic, diagnosed at 14 months old so I tend to not freak out about my health from having a medical issue for so long. That is not to say that I am not vigilant, just tend not to get stressed and take one thing at a time.
I was at stage 2 (2.6cm tumor), but the margins were clear and no node involvement and I am so thankful for that, this was caught by a mamo, I wasn't having any symptoms what so ever and even my bloodwork didn't show anything.

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seathink | @seathink | Aug 15 11:23am
In reply to @roberta75 "Where are you getting your care?" + (show)
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Where are you getting your care?

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@roberta75 , I had first three years at UCLA for the active treatment of TNBC 3B (I lived in LA), and now receive care at the local cancer center in the PNW after our family moved.

Cancer Care NW has followed UCLA's guidelines, although I have just now been able to move to 6 mo blood work.

I was 38 when I started, now 43.

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roberta75 | @roberta75 | Aug 15 1:50pm
In reply to @seathink "@roberta75 , I had first three years at UCLA for the active treatment of TNBC 3B..." + (show)
Profile picture for seathink @seathink

@roberta75 , I had first three years at UCLA for the active treatment of TNBC 3B (I lived in LA), and now receive care at the local cancer center in the PNW after our family moved.

Cancer Care NW has followed UCLA's guidelines, although I have just now been able to move to 6 mo blood work.

I was 38 when I started, now 43.

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Thank you for your information. You started so young! I hope all goes well for you. Sure wish someone could find a cure for this cancer.

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