Survivor story, 7 years and I took the road less traveled

VioletKali
VioletKali Member Posts: 243
edited April 2021 in HER2+ (Positive) Breast Cancer

June 19th 2014 I was DX with a 1.7cm Triple positive breast CA.

I chose a bilateral MX and requested to keep my nipples, despite them being breast tissue. I chose this because I refuse to do radiation because it was on my L side directly near my heart. Nope..Also, RADS would affect my cosmetic outcome and I am vain.

Was supposed to do 6 rounds of TCH, but I quit at the 4th round. Continued Herceptin for 5 more months until the fatigue from lowering LVEF lessened my quality of life..It wasn't too low, but low enough for side effects.

I tried OS plus an AI, but my quality of life was no good. Tamoxifen was a no go because I had been on prozac for over a decade and my mental health is everything to me.

I declined hormonal therapy.

I do not see an Oncologist, my family doctor orders yearly breast MRI's and offers me anything needed. I see no point in seeing an Oncologist when I do not need their service.

I am FANTASTIC. After quitting chemotherapy, getting the hormone therapy out of my system, and focusing on feeling better, I am 99% of what I was pre cancer.

It took 4 years to feel 80%, and I am just now feeling 99%.

So far I have seen women that DID EVERYTHING I did not do have recurrences, so I personally believe that doing everything is a crap shoot. If my cancer wants to recur it will, regardless of what I do. I am dedicated to living well.

I did not follow the regular path, but the path I have followed has given me so many GOOD years that I wouldn't change anything.

I do take DIM supplement, as well as Cinnamon.

Life is good..I am still ALIVE.

· Share on FacebookShare on Twitter

Comments

  • ctmbsikia
    ctmbsikia Member Posts: 1,095
    edited April 2021

    Thank you for sharing. I am also of the belief that it is all a crap shoot. Happy living well!!!

    · Share on FacebookShare on Twitter
  • VioletKali
    VioletKali Member Posts: 243
    edited April 2021

    I always wondered if anyone felt the same way as I do, I just never really asked because I would never want to make anyone feel as if I judge them for doing everything possible.

    How are you doing? Happy living well!!

    I admit that if my tumor were larger that I would likely have made different choices.


    · Share on FacebookShare on Twitter
  • Phoenixrose8
    Phoenixrose8 Member Posts: 71
    edited April 2021

    Hi VioletKali,

    I feel like you do usually but I am struggling this week. I have a mammogram and MRI next week. I’m trying to just stay present but it’s very difficult. Last time I had a mammogram they found a benign mass in my other breast which required another surgery. I don’t know what to do. I already have medication for anxiety but it’s not working. I have my first PTSD therapist appt and MO appt next week too. It’s just too much.

    · Share on FacebookShare on Twitter
  • VioletKali
    VioletKali Member Posts: 243
    edited April 2021

    This may seem rather extreme to you, but had you considered a bilateral mastectomy?

    I had a bilateral MX and requested my nipples be spared. It appears that nothing was ever done, I have a few faded scars, but that is it. I chose an MX Because I didn't want radiation over my heart, as a Nurse I saw too many after effects. I told the doctor I wouldn't even do it if I was lymph node positive.

    The surgery was easier than chemo for me. My pain was well controlled.



    · Share on FacebookShare on Twitter
  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited April 2021

    Sometimes, less is good enough. My next-door neighbor was triple positive, and she only made it through four TCHP infusions. When she had her surgery, her doctors discovered that she had achieved a pathological complete response! Worse, she has a pre-existing heart condition, so she couldn't do Herceptin. So far, so good.

    I did the whole shebang (am still on Zoladex + Aromasin), and I feel good, too. I'm glad to hear you're doing so well, VioletKali! ((Hugs))

    · Share on FacebookShare on Twitter
  • DutchieGirl
    DutchieGirl Member Posts: 103
    edited April 2021

    Treatment is such a personal thing. When I was diagnosed, I knew I wanted whatever treatment I could get. I didn’t have to have hormone blockers because I’m hormone negative. My mom, on the other hand, was put on tamoxifen after her chemo and radiation. She could not tolerate it at all. Her GP told her to just stop for a month. Well, she stopped for a month. And then another month...and another. She never took it again. She had stage 3C ILC, with a 7 cm tumour and 13 positive nodes. And, after more than 22 years, she is still doing well. No recurrences or metastasis. Glad she’s still here!

    · Share on FacebookShare on Twitter
  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited April 2021

    violet,

    Congrats on your survivorship! Treatment, whether aggressive and conventional or less aggressive and alternative is not only a personal choice but one that comes with no guarantees.

    I have been living with stage IV bc for almost 10 years*. I had rads to the bone met on my femur and have taken all three AI’s and have had no progression at all. Is it because of the AI’s? I would like to think so and I believe I have never missed a dose but who really knows? For me, that remains the greatest mystery yet being pragmatic and evidence oriented I am more comfortable with conventional tx. So what’s the secret to my long term survival? We simply don’t know.

    * I have been lucky. Despite some issues in the beginning (yes, port installation can result in a collapsed lung) and side effects from AI’s, I live a very normal life and am just about to retire from a long teaching career. Relative to many I have had an easy time

    · Share on FacebookShare on Twitter
  • Racheldog
    Racheldog Member Posts: 227
    edited April 2021

    Wow, this post is exactly how I am thinking. Almost 69 years old and quit Kadcyla after either it or the Herceptin component caused Interstitial lung disease issues. I refuse to get as sick again as I felt after the 4th infusion and the oncologist failed to identify. Another one did.

    In three months I went from a healthy person to nothing but feeling like quality of life was gone. No way to live. I know I will probably not tolerate the AI,s. I am supposed to start radiation but that does no5 sound appealing. I wonder how many oncologists would put themselves thru such treatments. I think I saw in the 60 percent range. Not high. I am triple positive with a tiny tumor. Had lumpectomy. Violet Kali. You were diagnosed in 2014. I think much of this is a crapshoot too. How are you doing 7 years later

    · Share on FacebookShare on Twitter
  • VioletKali
    VioletKali Member Posts: 243
    edited April 2021

    I am fantastic. It took me a good 3-4 years post chemo to feel 80%, and now 7 years out I am at 95%. I doubt I will ever be the same, but I am sure I would be worse off if I had stuck with hormonal therapy. I am glad I quit it. NOT only did my joints hurt, but I developed trigger finger 😑.

    I want the days I have left to be great, however many they may or may not be.

    · Share on FacebookShare on Twitter

Categories