Chemo Resistant Tumors

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LauraL15
LauraL15 Member Posts: 4
edited July 2015 in Triple-Negative Breast Cancer

Hi all, hoping to find someone who's had experience with chemo-resistant TNBC tumors? My surgeon says to move to surgery sooner rather than later but at their team meeting apparently the MO decided that I need to finish out the last 4 weeks of chemo first. I'm having a hard time accepting this since the tumors are growing (I believe, based on feel). I could only get an appointment with the PA (who I doubt was at the team meeting) this Monday before my next chemo to ask for an explanation but I'm sure she'll have to go back to him (MO) and then get back to me. I have to wait at least 3 weeks after chemo for surgery so another 4 chemos means nearly 2 months until I can have surgery. Has anyone experienced this or have any info that I might be missing that would validate going 4 more weeks on a treatment that doesn't appear to be working? I have one 3cm tumor in the right breast and a 4cm tumor in one node with another note suspected. I'm choosing a double mastectomy for peace of mind, even though the surgeon says there's less than 1/2 percent of recurrence in the other breast. There is so much unknown about TNBC that I have a hard time really believing that. TNBC is less common and chemo resistant TNBC is even less. The odds have not been with me, thus my reluctance to believe I won't get it in the other breast.

I just found this site today and am appreciating the Triple Negative specific forum. I plan to read more to glean what I can, it helps me not feel so alone in this fight.

Thanks!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2015

    Laura, Welcome to BCO. You've picked a great place for support.

    Did you have your tumors scanned since chemo? I felt like my TN tumor had gotten bigger too, but was told they can't really know the true size until it's removed and biopsied. I had four chemos and it did shrink from 1.4cm to 3mm. That really surprised me because it felt the same to me.

    I also had a HER2 tumor that barely responded to chemo - 1.5cm to 1.4cm.

    Sending you best wishes and gentle hugs.

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  • Moderators
    Moderators Member Posts: 25,912
    edited June 2015

    Dear LauraL15, We also welcome you to the BCO community. We hope that you find support, encouragement and information that is offered by those with shared experiences. Here is a link to our site's page on TNBC for additional reading. You are not alone with all of this. Keep us posted and stay connected. The MOds

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  • LauraL15
    LauraL15 Member Posts: 4
    edited June 2015


    Hello, and thank you for the welcome.

    From my original ultrasound in February, I had a second at the end of April. The largest tumor (in the lymph node) shrunk by about 20% and the other 2 did not shrink at all. By feel, there are 2 new "nubbins" (the surgeon's word) growing on/near the original tumor at the biopsy site, and they are painful. The first one of these appeared in late May/early June, when the biopsy was done Feb 5. On the other hand, my neuropathy from the Taxol really increased last week so this may need to enter into the discussion I have with the PA tomorrow before my next scheduled treatment. I found out that my diagnostic is Stage 3a (I thought I was 2b) which has added to my uneasiness, along with thinking that chemo-resistance cannot bode well for the future. Up until this week I think I was handling it quite well emotionally - I hope that when I get some answers to all my new questions that I'll be able to find some of that peace again. I think it's that I don't understand why they made the decision they did that's the worst part. Apparently one of them was supposed to call me Thursday after their meeting which didn't happen. I could have then asked my questions and voiced my concerns and felt better about it, rather than waiting the whole weekend.

    Thank you both for your responses, I appreciate your words and encouragement.

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  • lintrollerderby
    lintrollerderby Member Posts: 483
    edited June 2015

    Hi Laura and welcome,

    I'm very sorry about your situation. If you are not on board with the treatment recommendations, please speak up to your team. Also, what chemos are you currently on? Perhaps, it's best for them to change the plan to a different regimen. I had an excisional biopsy that diagnosed my TNBC (since no one thought it was malignant), so therefore, I had adjuvant therapy. I never got to see how or if my tumor responded to the TC I was on. I fully understand wanting it out of your body; however, the flip side to that is: since you know you're dealing with treatment resistant TNBC, perhaps it would be comforting to know when the "correct" regimen has been used? There would be no guessing which would stick around for the future and make you doubt. If it were me, I imagine, I'd insist at this point that the MO either switch chemo cocktails or I'd find a new MO. If you're having growth of new areas and minimal shrinkage, I'd see no compelling reason to continue on the current protocol.

    You haven't listed your age and whether you had BRCA testing. The reason I ask if because if you're "young" or have a deleterious BRCA mutation, there's a good chance that a PARP inhibitor or platinum-based chemo would be more effective for you. If you're not already being treated at an NCI-designated Cancer Center, then perhaps you should seek an opinion from an MO at one. Also, please look into clinical trials for which you might qualify.

    I wish you the best of luck.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2015

    Laura, it's awful when they make you wait like that. I hope you get some answers soon. Please update us when you can. I'm really interested to hear what they have to say.

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  • LauraL15
    LauraL15 Member Posts: 4
    edited July 2015

    It's been a crazy week! I saw the PA Monday before my next scheduled chemo. They had made the decision based on the prior Tuesday's visit with my surgeon. I had new info to share regarding the chemo side effects and they very much concerned her. The neuropathy had really kicked in. She did an exam then called the MO and said she'd have to delay chemo because of it, and confirmed the new growth on the original tumor. At that point he agreed to stop chemo and move to surgery, now scheduled for 7/22.

    I also received a brochure in the mail from my employer about a new benefit through Advanced Medical where they will review all of my medical records and reach out to experts across the country for input on my case. I signed up for that right away and am interested to hear what they say. My specific questions to them were regarding clinical trials, how to reduce risk of recurrence, and should I do more chemo after surgery and if so what kind.

    I also started reading the book Surviving Triple Negative Breast Cancer, it's been good so far. She has compiled a ton of information in readable form. I'm turning my focus now to survivor after-care, dropping unhelpful habits and starting better ones. Maybe I'll find more info on here too, any recommendations?

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2015

    Laura, I'm sorry to hear the tumor is growing. I'm hoping that when they review your medical records they will come up with something.

    You don't list what chemo you are on now. Have you discussed changing your regimen before surgery, so they have the option of knowing what is working? I did Taxotere and Carboplatin and it worked really well on the TN tumor.

    Did you ask if anyone has been through a similar experience on the active TN thread?

    Maybe you can get a second opinion with an MO that focuses on TN BC??

    Hopefully someone will come along that has had the same experience. Bumping this to the top of the active list.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2015

    Bumping to the top before I log off.

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  • LauraL15
    LauraL15 Member Posts: 4
    edited July 2015

    Was just rereading this, the chemo was 4 rounds of A/C every other week and then 12 weekly Taxol. With the new growth I don't feel that I have time to experiment with different chemos i just want these things out. They will be sending some tissue from my tumors to a research facility which I hope will help in the search for a better treatment for TNBC.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2015

    I can certainly understand the need to get it out.

    Most women have adjuvant chemo and don't get the benefit of knowing if it's working or not.
    I always console myself with that fact because one of my tumors didn't budge with chemo.

    Please keep us updated if you can Laura. Keeping you in my thoughts!!

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