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dmp1960
dmp1960 Member Posts: 18
edited March 2016 in Triple-Negative Breast Cancer

Hi all - I'm new to this forum. It's very reassuring to see all of the success stories on here. Everyone here seems so brave. It gives me hope for what I'm told is a very scary diagnosis of TNBC.

I'm 55 yrs old and was Dx with what I thought was DCIS on my right side - left side negative. I choose to do a double mastectomy since I've had years of bad mammograms and felt like I was a ticking time bomb. Had the double mastectomy on 2/16/16 - pathology came back with DCIS on the left side too. Right side was not just DCIS but IDC too - 6 mm - node negative. Found out a week after that the IDC was triple negative. I'm devastated of course and having a hard time wrapping my head around this. Saw an oncologist on 3/04/16 - and although the cancer is gone for now, she recommended chemo to lessen the chance of recurrence. I'm scared to death of the chemo but will do whatever is necessary to save/prolong my life. The oncologist I saw is recommending TC chemo - 4 rounds - every 3 weeks. Should I seek a second opinion - I know there's not much of a choice for TNBC with regard to treatment. Is a few rounds of TC chemo the standard protocol? I'm so worried about the side effects - pain, nausea, neuropathy, hair loss, etc.

Can anyone here let me know their experience with TC chemo? Was it painful? How long until my hair falls out? When will I start to see my hair grow back? I have so much anxiety and so much fear of the unknown.

Also very worried about follow-up care. How do they monitor you for recurrence? The oncologist I saw said that she will see me every six months and ask me a lot of questions. Is that enough?? Are there tests they can perform to reassure me that the cancer has not returned??

Thanks everyone!
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  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2016

    I'm sorry you have to be here but you've found a great community. I don't have much as much knowledge about TNBC, but I'm familiar with the treatment protocol. I think it's always good to seek out a second opinion, preferably at a research hospital (at a university for instance). At least you will have some more peace of mind about your decision. And it's better to have all your options on the table and then make a choice. As far as recurrence, you would probably have tumor marker tests (blood test) that shows tumor activity in the body, it also picks up other inflammation and things too so higher tumor markers don't always mean recurrence. Since you didn't have any lymph node involvement they probably won't recommend a PET scan, but that is something some oncologists use to properly stage TNBC. The "questions" your oncologist told you about is important because any new, persistent symptoms can be a sign of recurrence. Not that every ache and pain is, but it's better to know your body and spot the things that are out of the ordinary.

    When you feel stressed remember that your cancer was caught early and the prognosis is good with chemotherapy. Have faith that things will be okay. Best of luck going forward.

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  • dmp1960
    dmp1960 Member Posts: 18
    edited March 2016

    Thanks LovingisLiving. I keep trying to remind myself to stay positive and am hoping that in time that will come. I am getting a second opinion in Philadelphia on the 15th so I can make an informed decision. I appreciate you reaching out and my best to you for a happy healthy future. Many hugs....

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  • Fiercer
    Fiercer Member Posts: 45
    edited March 2016

    DMP- so sorry you are going through this. My treatment seems similiar, but I did chemo first. I felt confident that the chemo would wipe out any cancer along with radiation. After all was done and said, I asked my new oncologist how was I to get through the months being so anxious about recurrence? I get an MRI, mammogram and CT scan once a year. It's as reassuring as it can get. No one has ever recommended tumor markers for my type of cancer. They said it would be inconclusive as I would have markers and no baseline. So why bother?

    Chemo wasn't all that bad. I had 4 treatments of Cytoxin and Taxotare... It did the trick! Hair loss, joint pain, etc were not fun and I have lingering joint pain and neuropathy, but my feet hit the ground every day! I feel I made the right choice for me.

    I'm three years out and hope I'm past it. I don't think about it as much either. I've moved on, but like to visit here every so often to give support and see if there are any new treatments.

    Wishing you the best in making your decisions

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  • dmp1960
    dmp1960 Member Posts: 18
    edited March 2016

    Thanks Souldancer - it's nice to hear stories like yours. I'm hoping I tolerate the TC well. I guess once I get through my first treatment, I'll feel better. The unknown is so scary :/ Congrats on being 3 years cancer free! I hope you have many happy, healthy years ahead. Many hugs...

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  • ScotBird
    ScotBird Member Posts: 650
    edited March 2016

    Hi dmp, I just want to say that I hope your trip to Philadelphia goes well, and I'm sure you have a long list of questions. I take a notebook and write the answers down at my medical meetings then read them back to them at the end to check I have got it right. They probably think I'm a bitmad but it really helps me a lot as it's difficult to remember everything if I don't write it down. I'll be thinking of you on 15th. Hugs.x

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