TRIPLE POSITIVE GROUP

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  • momwriter
    momwriter Member Posts: 310
    edited September 2015

    Fitz- congrats on your 5 year mark. I know what you mean by not wanting to celebrate, but it's so great that you're NED! I have a friend with stats like yours except a bigger tumor and she's NED at 10 years-- it seems Herceptin and chemo work for many people.

    Thanks for posting your follow-up regimen. It's helpful to know what others are doing and that every six months can be the norm. Do you still see your breast surgeon as well?


    You're right, you can move on but there are daily reminders of the BC experience. For me it's my MX/reconstructed breast and the accompanying not quite normal arm and chest area motion and my skin especially on my legs that seems unusually thin and veiny even for a 50 year old as well as the occasional leg cramp. And of course the scans/tests. I hate those but I read Ruthbru's list for a resilient outlook in the exercise forum and one of them was to face fear which I'd like to remember to do. So I'm going to try to do that for my next mammo/mri rather than let it undo me.

    Hope all keeps going well for you!

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  • momwriter
    momwriter Member Posts: 310
    edited September 2015

    Hi-

    I wanted to repost and share RuthBru's tips for Resilience--


    Expert Tips For Resilience

    1. Develop a core set of beliefs that nothing can shake

    2. Try to find meaning in whatever stressful or traumatic thing that has happened

    3. Try to maintain a positive outlook

    4. Take cues from someone who is especially resilient

    5. Don't run from things that scare you: face them

    6. Be quick to reach out for support when things go haywire

    7. Learn new things as often as you can

    8. Find an exercise regimen you'll stick to

    9. Don't beat yourself up or dwell in the past

    10. Recognize what makes you uniquely strong-and own it

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  • Mommato3
    Mommato3 Member Posts: 633
    edited September 2015

    Steph, my cardiologist has me on the lowest doses for carvedilol and lisinopril.

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  • Stephmoen
    Stephmoen Member Posts: 563
    edited September 2015

    interesting mommato was that as a precaution or because you were having issues I'm going for my 3rd ultrasound next month I'm just nervous I don't want anything to keep me from getting this drug that will save my life!

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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited September 2015

    Congtratz, Fitz! I was also Stage IIIA; it's always good to see a fellow Stage IIIer remain NED.

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  • RobinLK
    RobinLK Member Posts: 840
    edited September 2015

    I have been following all going on in here. Congrats on Anniversaries, treatment successes, treatment ending, etc.

    My rheumatologist has concluded that my arthritis is completely tamoxifen related. No inflammation issues.

    My ooph is tentatively scheduled for Oct. 5th. Today is my US to check on those Titans. They have not stopped cycling and that is beginning to make my MO nervous I think. Hence the phone call after hours to double check our plan and my compliance.

    I am back on the tamoxifen and all the SE's came slamming back. Cannot wait for surgery and the ability to try other medications. I know it is a crap shoot, and I will most likely have to get treatment for my osteoporosis. It is currently mild and stable. I also am aware that I am opening the door to new and different SE's, but I truly cannot function on tamoxifen. I had to stop all pain meds prior to surgery, and the 8 pounds I lost is creeping back on. I literally hurt in pretty much any position. A trip to the grocery store takes the rest of the day to recover. I have not made it to the gym and pretty much want to cry when I think about it. I love going to the gym, but my hands and feet are so stiff and painful that even driving there hurts. Then getting out of the car....just call me the tin man waiting on Dorothy and that damned can of oil

    What I actually came here for was the following: have any of you seen this study? My chemo brain is not registering that I have read it. Just found it interesting... It is about the relationship between reproductive history, ER/PR/HER2 status and DFS.

    Click here for article

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  • Stephmoen
    Stephmoen Member Posts: 563
    edited September 2015

    yep study shows those of is such as me that gave birth more recently have a worse outcome :( try hard not to dwell on it

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  • RobinLK
    RobinLK Member Posts: 840
    edited September 2015

    Yes, there is that, but it is a mixed bag of information. There is also this:

    "Patients with HR+HER2+ breast cancer were 44% more likely to survive those with HR- tumors. Those with HR- tumors were more than twice as likely to develop cancer recurrence as those with HR+."

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  • Stephmoen
    Stephmoen Member Posts: 563
    edited September 2015

    hormone receptor being positive is always supposed to be better due to more ways to prevent that type of cancer to come back with medications and targeted therapy

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  • lago
    lago Member Posts: 17,186
    edited September 2015

    RobinLK I don't think that article draws the correct conclusion. Chances are the further you are from your last pregnancy the older you may be. We already know that younger survivors have a higher risk of recurrence.


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  • RobinLK
    RobinLK Member Posts: 840
    edited September 2015

    Iago, couldn't this be related to why younger survivors are at greater risk? Not the whole thing, but a portion of it?

    Edited to add

    Is it just too unscientific to be valid? I just found it interesting and wanted to share. Was not looking to tip anyone's apple cart. Sorry.

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  • lago
    lago Member Posts: 17,186
    edited September 2015

    Not tipping apple cart. I just wanted to point that out. Younger patients don't fare as well because they usually get more aggressive cancers. Older patients may possibly not recur also because they pass of something else before the cancer comes back.

    As we know… it's complicated

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  • Stephmoen
    Stephmoen Member Posts: 563
    edited September 2015

    very complicated that's why I hate cancer!

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  • wpmoon
    wpmoon Member Posts: 270
    edited September 2015

    wrong time for this younger patient to read the thread. gonna go try not to fall down a rabbit hole into crazy town.

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  • Mommato3
    Mommato3 Member Posts: 633
    edited September 2015

    Steph, my Muga in June showed a drop in my heart function...52. I wasn't having any symptoms of heart failure so my MO didn't want me to have my treatment. She wasn't sure which treatment would put me over the edge. Two weeks later I had an echo and my heart function went up to 57. Now it's at 60. The cardiologist put me on these meds to protect my heart while I finished Herceptin. I'll stay on them until he's sure my heart has recovered.

    I didn't see the article. What age is considered young? Under 40, under 50, under 60

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  • RobinLK
    RobinLK Member Posts: 840
    edited September 2015

    The article did not specify age, just time between giving birth and DX. Since the two lengths mentioned were 20+ years or under 5 years it appears age is a factor. Yet someone who had children in their teens would still be considered young for a breast cancer DX. (35-39)

    I deleted my post as it appears to be causing distress and that was not my intention.

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  • chocomousse
    chocomousse Member Posts: 157
    edited September 2015

    That's it Gretagirl. I wish there was a test to determine if there's cancer escape in the node negative people. Giving something as toxic as herceptin to people who don't need it seems so wrong. I understand why its given to HER2+'s regardless of node status, it's just such a dangerous gamble. If the cancer has escaped, the herceptin will cure you if it doesn't kill you first. If it hasn't escaped and it kills you then you will have needlessly died.

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  • lago
    lago Member Posts: 17,186
    edited September 2015

    wpmoon I'm considered young (although not real young) because I was under 50. Do you want me to tell you about my friend that is triple negative and is 3 years out. She was diagnosed at age 22. You need to look at the specific stats given to you by your oncologist.

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  • Suladog
    Suladog Member Posts: 952
    edited September 2015

    WP,

    I was diagnosed Triple negative back in 1990 when I was in my 30's . They gave me a poor prognosis and yet here I am, having lived long enough to deal with this bullshit again. Back then they didn't even know what tripel negative was they knew I was hormone negative with an aggressive cancer and I obviously wasn't HER2+ pre discovery of herceptin because I'm alive today and when I saw my path report from UCSF adpfter being diagnosed with triple positive last year the first sentence stated that looking at my previous stuff from 25 yrs ago I was obviously triple negative. I was trying to get pregnant at the time I was diagnosed 25 yrs ago, never had kids afterward because of chemo pause

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  • Stephmoen
    Stephmoen Member Posts: 563
    edited September 2015

    I have spoke to my oncologist about my age and recent pregnancy..she believes I'm nide negative which is believed to be a big factor and also these studies are before newer drugs came around such as herceptin and perjeta she truly believes that in 10 years the survival rate will be much higher due to these newer drugs to combat bReast cancer..I hope she's right!!!!

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  • lago
    lago Member Posts: 17,186
    edited September 2015

    Not everyone dies from breast cancer that was HER2+ before Herceptin. It just was one of the poorer prognosis.

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  • jumbledbamboo
    jumbledbamboo Member Posts: 158
    edited September 2015

    i agree lago. Stats are going to change. I'm 35 and don't dwell on stats. There are far too many from different sources. Be your own advocate but also work with your oncologist. It's a good thing~ Edited to add I like stats though not gonna say I don't look

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  • KateB79
    KateB79 Member Posts: 747
    edited September 2015

    Just weighing in: I'm 36 and had very aggressive (grade 3 and multifocal) +++ BC before mastectomy. My nodes were negative, but we're doing chemo and a year of Herceptin anyway, just to be safe. Both my surgeon and my MO are thrilled--my surgeon gave me a high-five--that the cancer was +++, because curing it is a distinct possibility. The combination of surgery, chemo, targeted treatment, and endocrine treatment, while they don't guarantee anything, reduce the risk of recurrence pretty significantly.

    All of that said, I'm aware that it's a possibility. I try not to think about recurrence (especially since I'm still in chemo); worrying about the future just strips me from being present in my life right now, if that makes sense. Is recurrence a scary possibility? Yes. Is being cured also a possibility? Yes, and I choose to go with that right now, because it beats the anxiety-filled alternative.

    Herceptin isn't likely to kill any one of us. Congestive heart failure is a very rare SE, and I'm willing to take that gamble if it means being cured of something that would otherwise kill me.

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  • Jumpship
    Jumpship Member Posts: 305
    edited September 2015

    Anyone have liver trouble with Tamixifen and have to stop? My liver just started acting up...mo didn't mention this as a possible side effect.

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  • RobinLK
    RobinLK Member Posts: 840
    edited September 2015

    My liver numbers have gone up and I have been diagnosed with Non-alcoholic fatty liver disease. They did not stop my tamoxifen, was told I need to lose the weight I have gained while on tamoxifen.

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  • runningcello
    runningcello Member Posts: 110
    edited September 2015

    I think I had some of the crappiest characteristics for my illness but I am so grateful I got a complete response & am still cancer free .. Im always afraid I am going to die so young but I pray I will grow old with my husband.


    I was 24 at diagnosis, triple positive, poorly differentiated, grade 3 with characteristics of micropapillary carcinoma. It was the worst time to ever read anything online - but I pray I beat the odds :/

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  • lago
    lago Member Posts: 17,186
    edited September 2015

    Tonlee who started this thread was sure she was going to recur by now. She too has celebrated 5 years NED. Diagnosed age 42, stage IIIA (yes in her nodes).

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  • jumbledbamboo
    jumbledbamboo Member Posts: 158
    edited September 2015

    You seem to grasp this so well. I have a hard time. Having the 2 tumors and one with different grades I just go with the least lol

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  • lago
    lago Member Posts: 17,186
    edited September 2015

    jumbledbamboo my neighbor had multiple tumors and a ton of nodes. Diagnosed stage IIIB, triple positive right after me. She is coming up on 5 years NED.

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  • geewhiz
    geewhiz Member Posts: 1,439
    edited September 2015

    Me too. I had 3 tumors - one was almost 3 cm. I had 8 nodes, Lots of matted ones too. Lymphovascular invasion. Oh and Micropapillary type too. All Grade 2. So not terribly encouraging at all.

    BUT

    6 years is in a few weeks.

    And

    I really don't google much anymore. Why bother? I just do the best I can each and every single day. It's about finding balance and ultimately peace.

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