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Newly diagnosed - triple effing negative

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Cleo42
Cleo42 Member Posts: 7
edited August 2021 in Just Diagnosed

This is my first post here...I have read some of the other threads and have found it so helpful.

I was diagnosed March 31st, right before the long weekend here. My doctor told me it was invasive ductal carcinoma, that it would require surgery, likely chemo, and that I would not hear anything over the long weekend, although my referrals were in to the surgeon and BC Cancer. Gave me a prescription for Ativan to get through the weekend. I turned 42 on that Monday.

Obviously I did a ton of research, but not on TNBC, as I was just hoping I don't have THAT one. Then the doctor let me know if was, in fact, triple-negative. I was convinced that I was going to die of this. Maybe not now, but getting to 50 no longer feels like a given. I have two boys, age 12 and 9.

Since then, I have met with the surgeon, MC, gotten second opinions from a friend of mine who is also an MC (so grateful) and have a treatment plan. Starting chemo in the next week or so. Then surgery in the fall.

I feel like my life/universe is shifted. Everything I knew is no longer. I feel so healthy...except for this tumour in my chest. It feels surreal.

Comments

  • lw422
    lw422 Member Posts: 1,401
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    Hello Cleo42 and I'm sorry you have to be here. I understand exactly how you feel because in January I got to hear the words "inflammatory breast cancer." Honestly, after reading about posters with initial in-situ cancer (the "best" kind) having recurrences and being Stage 4 a short time later, I decided that it really doesn't matter what label they put on us. It's all a crap shoot and there are plenty of TN's living a (somewhat) normal life for YEARS.

    Don't give up before you get started! Hopefully you're going to be around for a long time to see those precious boys grow up. Yes, your world is different now and we all understand how that feels. My very best to you as you get started with treatment. We will all be here to help you along the way.

  • 2019whatayear
    2019whatayear Member Posts: 468
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    Because of your young age and because you have TNBC have they discussed getting genetic testing? LW422 is right a lot of this really feels like a crapshoot.

    When I was getting prepped for BC surgery the nurse took my blood pressure and pulse and then re-asked all the questions like do you have diabetes, liver problems, etc, etc etc etc.

    I replied: no , no, no , no .

    She brightly said, "You are the picture of health!"

    I said dryly: "Aside from the whole cancer thing, yes."

    She quickly left to have her foot surgically removed from her mouth.

    Happy

    Big hugs

  • Cleo42
    Cleo42 Member Posts: 7
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    Yes, I qualify for genetic testing. Have spoken the a genetics resident and have a referral to hereditary cancer; got the bloodwork done. If I have the BRCA1 mutation, I plan to get ovaries removed as well. We have no family history of BC, however I do not know my dad’s family history, so it is possible there is history there.

    I am holding on to one thing one of the MCs has said : “this is still highly treatable and curable”

    Had a PET scan yesterday, ultrasound on the lymph nodes Monday, and just hoping for no spread.


  • moderators
    moderators Posts: 8,081
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    Dear Cleo42,

    Welcome to the BCO community. We are so glad that you found us in the midst of all that you are trying to judge right now. We know that you can find tons of support and helpful information here from the shared experiences of our members. Please reach out to us if we can offer any help as you navigate your way around the boards.

    The Mods

  • mightlybird01
    mightlybird01 Member Posts: 161
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    Hi Cleo42,


    sorry you find yourself here. But rest assured that with the help of this group, you will get through this! I was diagnosed at 49 with TNBC with no history of any cancer in my family. BRCA1 and 2 were negative, so where my nodes, based on breast MRI and sentinel node biopsy. In my breast clinic (an NCI cancer center), they do breast MRI and when this is clean they will not do a PET scan. But different centers do different things. PET scans are usually not done for early stage cancers.

    I had unilateral mastectomy after AC+T chemo and half flat since.

    I am exactly 2 years out from it all and I can say that while the 6 months in active treatment were not exactly fun, it was not nearly as bad as I thought it would be. The absolute worst time is the time waiting until treatment starts. After that everything will be so much better. Being triple negative is not all bad. For a start, these cancers are usually Grade 3 which respond very well to chemo. Second, after you finish, you will not need to take any hormone blocks for 5 years. Third, if you make it past 3 years it is very unlikely to come back. I focused my attention on those 3 positives and that helped enormously. So yes, for now, the best news you could get is being node negative, and clean PET scan. But even if you are not, there are still plenty of women with TNBC and node positive who live long lives.

    As for myself, I can say after 2 years I have no health problems at all. In fact, at my most recent oncologist visit my oncologist said I was healthier than before. I lost some weight and I managed to keep it off. Cancer is and was my motivator to keep my weight down and I feel so much better for it.

    I liked the sign that is displayed in my infusion center: "Cancer did not get us down on our knees, it got us on our feet".


    Once you start treatment, you can just sit back and let the professionals do their job. Try and focus on the things where you actually CAN make an influence, i.e. healthy eating and exercise. Find an exercise routine that you could possibly sustain during chemo. Daily walking does wonders for all sorts of chemo side effects. I have never walked as much in my life than during chemo :-)!


  • moth
    moth Member Posts: 3,293
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    Sorry you find yourself here. sucks. Hang in there. Most people with TNBC do *not* recur so just assume the odds are in your favour.

    BC Cancer is excellent. I've been receiving such excellent care from them all along. (what is an MC though?)

    It is very surreal at first and then suddenly it's your weird new normal. It will get better.

  • NoBananas
    NoBananas Member Posts: 25
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    Cleo42, here’s a comforting story for you. My sister was diagnosed at 32 with TNBC. ILC. 2/19 infected nodes. She had a mastectomy/reconstruction. No radiation. One of her treatments was Epirubicen, probably not even used anymore! 12 yrs later, she had a new bc, 6cm tumour entangled in her nerve bundle near her shoulder. Extensive radiotherapy and chemotherapy, no surgery because cutting the nerves would be equal to leaving her with stroke symptoms. Still TNBC. And that was 15 years ago. She has been cancer free all that time. She is now 59. 27 years since her first diagnosis. Chemotherapy has come so far since then. She wasn’t given a stage or grade back then either. Remember, all the survivors go on to lead normal lives, and don’t check in here, to tell you of their success. It’s only because I’m back here after 18 yrs, that I can tell you of her success. Even though you’re triple negative, you have a lot of positives on you

  • Cleo42
    Cleo42 Member Posts: 7
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    thank you so much for the words of encouragement!

    The Medical Oncologist (sorry I think I wrote MC earlier - all these terms and words are so new) called today and said the PET scan was clear except for one lymph node near the tumour that lit up lightly. She said this is good news - it’s not in the armpit area, or anywhere else. I was super worried because it took me 4 months to get a mammogram after finding the lump in December. And it had grown during that time.

    Likely adding radiation to the treatment plan, after the surgery. Chemo is scheduled to start on April 30, but she said would likely move up a few days.I managed to get my first vaccination yesterday (yay), so one more thing off the list.

    I am trying to enjoy this moment of relative calm before treatment starts. Have done 2 weeks of crying, tests, research, telling people. Now there is a plan in place and nothing to do but trust that we will get through it.

    Taking my beautiful, supportive girlfriend for some nature therapy and lake swimming tomorrow for some much needed mental health time.

    Thank you so much for the warm welcomes to a place no one wants to be.


  • NoBananas
    NoBananas Member Posts: 25
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    Cleo, I start chemo on the 27th April too, close to your start date

  • Poppy_90
    Poppy_90 Member Posts: 84
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    Cleo: Fellow TN here, I’m just about one year ahead of you. It’s hard, but not as hard as you think it’s going to be. Take it one step at a time and you can get through this. I’m here if you ever have any questions or just need to vent. I’m glad you’re getting some time this weekend to relax and be with your girlfriend. And you’ve found a great place with a lot of support. Keep us posted on how you’re doing.

    Kristen

  • sasamat
    sasamat Member Posts: 43
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    Hi Cleo42,

    This caught my eye since you're also in BC. Just wanted to say that my mom, turning 84 this year, is a 15 year survivor of TNBC (and still no sign of recurrence). This sort of outcome happens and probably much more often than it "feels like", because places like BCO have greater participation from folks who drew the short straw, which of course makes total sense. Wishing you the best as you work through the next steps. Enjoy our glorious weather this weekend!

  • Gruesome
    Gruesome Member Posts: 3
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    I'm thinking I'm a member of this club, if I'm reading the pathology report correctly. Had a mastectomy on 4/05 and my first post-op visit is tomorrow. I feel really lucky, though because they took three lymph nodes for sentinel node biopsies and they were all negative. Which hopefully means that it was confined to breast that I don't have anymore!

    The thought of chemo is kind of depressing, though. If it's necessary. How do you keep working throughout? My insurance is tied to my job and I'm way too young (well, I'm 59) for Medicare.

  • Cleo42
    Cleo42 Member Posts: 7
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    Grusome, I am sorry for the pathology report. I just keep telling myself what my oncologist said, “this is still treatable and curable”. Triple negative is scary, but still curable, just fewer treatments to throw at it.

    I am not sure about working through chemo. Do you have sick leave time? I am in Canada, so US sick leave and insurance policies don’t make sense to me. I will be on short term disability, and still have access to health care and extended benefits. I do know that people do work through chemo, however. I would suggest talking to your employer about accommodations for you during this time (HR if you have it).

    I have been feeling positive about my treatment plan, and am just taking one step at a time. I know there will be hard times ahead, but enjoying this brief calm before the storm.


  • Poppy_90
    Poppy_90 Member Posts: 84
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    I just wanted to share. For many reasons, I kept working through my chemo. It was tough, but not impossible. I had treatments on Friday and that gave me the weekend to recharge. About half way through, I did take a Monday off, because it just was a cumulative impact.

    If I had to do it over, I would’ve probably worked a little less, but it gave me a lot of “normal” in a very crazy time. (I didn’t share with my team beyond my boss and HR until I was post surgery). Chemo isn’t easy, but it is doable. Don’t let what you have seen in movies scare you. If I can do it, I have no doubt that you two ladies can as well. You’re stronger and tougher than you know.

  • anothernycgirl
    anothernycgirl Member Posts: 821
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    Cleo, I'm sorry that you find yourself here, - but these message boards are a wonderful place to find support and understanding.

    Try to find this one:

    Topic: Calling all TNs

    Forum: Triple-Negative Breast Cancer —Share with others who have ER-/PR-/HER2- breast cancer.It is one of several here that helped me get through some of the toughest times.Keep your chin up. This all stinks, but you can do it!Hugs from NYC

  • dutchiegirl
    dutchiegirl Member Posts: 76
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    I have a good friend who was diagnosed with Stage 2 TNBC in 2003. She has done so well, no local or distant recurrence. She did test positive for the BRCA gene long after her treatment so she had a double mastectomy and oopherectomy to increase her chances. But she lets everyone know that TNBC is definitely survivable

  • rollercoaster451
    rollercoaster451 Member Posts: 9
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    Hi there,

    I was diagnosed with TNBC this year and I've research it quite a bit. I really freaked out at first too. I'm clearly not a doctor but here are some interesting things that I found out.

    - Triple Negative is heterogeneous. Not all TNBC acts alike. "Basal like" is very different from apocrine and others. You will find all this stuff out in your pathology report or ask your doctor what kind of TNBC it s. Also, look for your grade and Ki67 number.

    - Stage trumps biology. Stage one TNBC no lymph nodes has a fairly good prognosis.

    - If it's going to come back it will in the first 3 - 5 years. Hormone positive cancers can come back many years later.

    - There are different treatments for TNBC based on stage. Not all TNBC requires the Red Devil.

    - After your surgery they will test your hormone receptors again and possibly your Her2 again. There are some cases where it changes.

    Here are some articles I thought were helpful.

    https://ar.iiarjournals.org/content/33/6/2737

    https://www.practiceupdate.com/content/stage-trump...


  • Cleo42
    Cleo42 Member Posts: 7
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    Thank you for the research and resources.

    Now that I have started treatment, I am feeling more positive. My treatment plan is to cure this cancer and that is what we are working towards.

    I am also hopeful that once I pass the 3 year, and 5 year mark this will be well behind me. Maybe I will get to celebrate a 50th birthday! In any case, I plan to live the hell out of as much time as I have.

  • moderators
    moderators Posts: 8,081
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    Posting in case anyone is interested:

    TODAY: VIRTUAL MEET-UP using Zoom
    Come talk with others just receiving a breast cancer diagnosis in a relaxing, confidential and supportive virtual environment.

    May 10, 2021 12:00 PM Eastern Time (US and Canada)

    Register in advance for this meeting:

    https://us02web.zoom.us/meeting/register/tZwoc-ugr...

    After registering, you will receive a confirmation email containing information about joining the meeting.

    Warmly, The Mods

  • Calvin71
    Calvin71 Member Posts: 8
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    Was your sister second cancer was in same breast ?

  • turbokitten88
    turbokitten88 Member Posts: 21
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    I was in a similar boat as you, as i was healthy besides the tumor and never knew it. I was scared when they started talking about Triple Negative. But overall survial rate for TN is slightly less than the other types of BC. But all we can do is keeping moving forward. Of course we all hope the treatmetn for TN will get better and better for targeted treatment. Once you start treatment you will feel better and your team will guide you through this crazy mess. Its not a death sentance. And we are here for you.

  • hrscott1
    hrscott1 Member Posts: 1
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    Thank you for posting your reply. I had the same experience when I had my lumpectomy two weeks ago. I said no to all of the questions from the 10 different people that came in before surgery only to hear at least half of them say “Well, you are just a healthy one.” Uggh…insert eye roll.