Triple Negative, newly diagnosed

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tressaliz
tressaliz Member Posts: 10
edited June 2014 in Triple-Negative Breast Cancer

My name is Kate, and I have triple negative bc. I say it this way, because I feel like this is now my identity. I hope only temporarily, but it is all I think about. ER and PR status were inconclusive following original biopsy. Results (pathology report) from my 9/9 lumpectomy and SND were given to me today at post op surgeon office. Dr called last week and told me, but I saw it for myself today.



I have been reading a lot about it, and was shocked when it seemed I had a better understanding of what's to come than the surgeons PA, who I met with today. She was very positive, focusing on tumor size (1.4cm), clear margins and clear lymph nodes. Had I not known about the TN status, it would have been a party! I appreciate the positive attitude, but she said I may not need any chemo, which threw me. I have not read anywhere of a TN with my stats (which I am so thankful are so good), not having chemo. While I don't want to go through it, I would be terrified not to. I feel like it is my fighting chance.



I have an appointment with medical oncologist on Thursday, and hope she is familiar and has experience with TN. It is at a cancer center (Pluta, Rochester ny), they treat all cancers, not just bc. Are there TN oncologists anywhere? Who are they and how do we find them?



I am less anxious than the initial wait to get things moving. Relieved to know what I am dealing with, anxious to get the next steps behind me.



If it wasn't for my husband and kids (17 & 15), I think I would lose it completely. I love having the kids as a distraction. Soccer games, friends over, laughter, silliness... This is my life, and I love it! I want the best chance possible of living it for a very long time. (I'm sure you all know what I am saying).



Thank you to this community for being here. I feel very alone with this, even with my great family and friends. They don't really understand, and are involved in their own busy lives (which makes me happy, I don't want them consumed like I am).



Anyways, advice appreciated, prayers appreciated, and thank you again to this community of brave bc sisters!

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  • ellenkc
    ellenkc Member Posts: 173
    edited September 2013

    Hi Kate -- I am in a similar situation with a 13mm growth. Found out last Tuesday that biopsy results indicate Triple Negative. I had see that name before but didn't understand what it was. Been reading a lot since then. Chemo has been advised, with or without any spread to nodes. As background:

    I go to the University of Colorado Cancer Center in Denver. Well worth the 100 mile drive for their multidisciplinary team approach. My visit last week was amazing. The docs meet between 8-9AM to review cases for the day as a team. Then, between 9 and 11:30 AM, I met individually with the medical oncologist, the surgeon, the radiation oncologist, the plastic surgeon and a genetic counselor. I also got an ultrasound of lymph nodes, which suggested no spread, and left a saliva sample for genetic testing. No family history, but I am 60, and this is my second bc (2006, ER+, about a centimeter, lumpectomy & radiation).

    And the docs on the team actually talk to each other!!! Amazing!!! 

    We are awaiting the genetic results to determine whether to do a mastectomy or a lumpectomy. Not real likely that I have BRAC 1 or 2, but worth checking.

    The team advised me that whichever surgical route we go, and even assuming the surgery confirms no spread of the cancer to the lymph nodes, I need to go through 4 courses of chemo, one every 3 weeks. They explained that this is because of how aggressive the TNBC can be. If the surgery is a lumpectomy, 3 weeks of radiation would follow the chemo. So that pretty much sets up my next 6 months.

    I am fairly calm, particularly since I have experience with the rads and lumpectomy and know they aren't really such a big deal (I only missed 2.5 days of work last time around). It's the chemo that worries me.

    While I am keeping busy so that I don't obsess on all this, the toughest part is that my husband, who was my main support last time, passed away in August and none of my family is nearby. Friends are really stepping up, but this puts a whole new aspect on those friendships.

    Ellen

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  • tressaliz
    tressaliz Member Posts: 10
    edited September 2013

    Oh Ellen, I am so sorry about the loss of your husband. To have bc recur so soon after, I can't imagine. I'm so glad you have friends near, but understand how needing them may make the relationship feel different. They are probably so glad to be able to help you though.



    It sounds like cancer center is wonderful and worthy of the travel. It is important to feel confident in the level of care you receive. Glad they are doing genetic test, it is nice to have as many pieces to the puzzle as possible. I had it done, and was surprised at being overcome by emotions at the negative results. I was much more worried than I even realized. What a relief! I pray yours will also be negative for the gene mutations.



    Thank you for posting the chemo plan. Your plan is what I have seen recommended or done most frequently with similar stats. I am expecting to hear the same on Thursday.



    I am encouraged by your calmness. Thank you! I will

    Be thinking of you as you face chemo and possible mastectomy. Hang in there! Xoxo

    Ps- talking doctors! What a concept! Lets hope is catches on! ;)

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  • ellenkc
    ellenkc Member Posts: 173
    edited September 2013

    Thanks, Kate. We should keep in touch given all our parallels. -- Ellen

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  • TifJ
    TifJ Member Posts: 1,568
    edited September 2013

    I am so sorry you are hear ladies, but welcome. There is a great thread called "Calling all TNS". Lots of wonderful ladies with great advice and emotional support all triple negative. Tressaliz- I have yet to see a TN that hasn't had chemo reccommended unless the tumor was very, very tiny.

    Another great site to check out is TNBCfoundation.com.

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  • tressaliz
    tressaliz Member Posts: 10
    edited September 2013

    Thank you TifJ!



    Ellenkc- I would love to keep in touch! Looking forward to hearing the results of your genetic test. I hope they let you know soon. My results took about two weeks. Thinking of you! :)

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  • RhodyMMM
    RhodyMMM Member Posts: 455
    edited October 2013


    Hi Kate and Ellen, mind if I join in? I was diagnosed with triple negative after an initial diagnosis of ER+/PR+. Turned out the radiologist did not get a sufficient tissue sample from one tumor when she did the biopsy, and the triple negative did not get caught. Thankfully they sent tissue out for oncotype screening, and we found the triple negative. Apparently when I had my mastectomies they only sent one of two tumors for pathology because the "thought they were the same."


    Kate, you commented about how alone you feel with all of this. I understand completely. As much as those who love us want to understand how we feel, they simply can't. Here is a great link that someone had posted on another forum a while back....it truly says it all!


    Martha

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  • ellenkc
    ellenkc Member Posts: 173
    edited October 2013


    Hi Martha and others -- Feel free to join in!


    Here's my update: Genetic tests are not due in until at least 10/10, and I am no longer willing to wait a week or two after that for a surgery date. With delays around my husband's death, it is already 2 months since the initial abnormal mammo.


    So I went ahead, with doctor's full approval, to schedule a lumpectomy, sentinel node biopsy, and placement of port for Wednesday 10/9. So I will be in Denver on Tuesday for pre-op appts, and stay until Thursday to make sure things are stable. Surgical follow-up and meeting with Medical Oncologist scheduled for 10/22, at which point I assume we will set up the chemo schedule, which I expect to start in November.


    In the meantime, I had a really strange experience with my primary care/nurse clinician. I am trying to figure out what to do. I made the appointment because I have been experiencing a lot of fatigue plus not sleeping a lot, no doubt due to some combination of the stress of my husband's illness and death plus this whole cancer thing. Didn't want to go into surgery and chemo already exhausted.


    Anyway, the provider went off on this whole thing about how she wanted to offer for free some CAM Detoxification after I finished chemo and radiation. As she got into it, I realized that the things she was talking about had been repeatedly debunked (e.g. footbaths to remove toxins from the body, avoid all sugar (Mayo Clinic lists that as a myth), and so on). Worse yet, she continued to push it when I repeatedly indicated I was not interested. She even started talking about examining all my food, all the stuff in my house that might have toxins, etc. Yikes! Total invasion!


    My first reaction was that if I were to continue to see her, we would have to agree not to raise the topic again. But the more I have looked into this and found the evidence against what she is proposing, it makes me wonder how on earth I can trust her judgment, even on traditional medicine.


    So aside from feeling betrayed and abandoned by someone I had hoped I could rely on, I am left debating: do I simply find another doctor and transfer my records without giving a reason, or do I attempt to talk with the provider, in the hope that she doesn't mislead other patients?


    I definitely didn't need this new wrinkle! Would appreciate your thoughts.


    Ellen

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  • RhodyMMM
    RhodyMMM Member Posts: 455
    edited October 2013


    Wow Ellen, that was really inappropriate of her! (I am a nurse). It sounds like she is selling some products and was trying to push them on you. Or is the provider a distributor? I would definitely talk with the provider about your uncomfortable feelings and see what he has to say. If you have lost trust in her it will be very hard to rebuild that. You could always speak with her directly about your concerns too, she may not have realized that she was pushing too far. As far as your stress, you could ask the provider office if they have a social worker available.....many of them do. If you are comfortable with your provider for all other aspects then perhaps you can resolve your concerns with the nurse. If you have other reservations in general then you could consider making a change.


    As far as your decision to move forward with the treatment, I think you are doing the right thing. All the delays become very scary because we hear how aggressive the TN is.


    I wish you the best in such difficult times!


    Martha

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