I'm considered high risk because I'm not hormone receptive

Options
snowyday
snowyday Member Posts: 1,478
edited June 2014 in High Risk for Breast Cancer

And I was misdiagnosed so by the time they actually removed my tumour I was stage four and then they started calling a High Grade cancer because it wasn't hormone receptive. They also found tumours in my liver and said I had symptomatic (I think symptomatic is wrong) but what they meant was I have a cancer that can come back anywhere in my body and since it's not hormone receptive they can't try stop it that way.  Has anyone else out there heard of this and how do you deal with it.  I have truly been in denial for months now. But with my next liver scan coming up in December I'm coming out of denial and starting to get scared.  It sound so silly that I've gone through surgury and chemo is almost finished but now I'm afraid. I wonder if its because subconsciously I'm thinking the chemo is killing it but when I stop chemo it can come back anywhere. I have radiation to complete yet, but as much as I hate the chemo I'm starting to wake up to whats really happening to me and it's nerve racking. How the heck could I let myself stay in such denial so long.

· Share on FacebookShare on Twitter

Comments

  • cmharris59
    cmharris59 Member Posts: 496
    edited November 2007

    Hi Pearl

    I am so sorry that you have to join the long list of those of us afflicted with breast cancer. I am not sure what to say except that you shouldn't beat yourself up now. My cancer is not hormone receptive and I have also been told that I am high risk.  I am not sure what to make of that either. I am sure others here can help you with more information.  Do you understand your pathology report?

     I found that I felt much better (even though I am falling apart most of the time) when I did research of my specific pathology online.  t allowed me to better understand and ask beter questions of my medical team.  Good luck and know that you are not alone in this journey.

    · Share on FacebookShare on Twitter
  • EyesOTex
    EyesOTex Member Posts: 194
    edited November 2007

    I'm so sorry, pearl49.  Maybe they said metastatic, not symptomatic?  And I'm assuming you are "triple negative", like some of us, meaning your tumor was not responsive to estrogen, progesterone, or herceptin.  While that seems scary, newer research shows that our tumors are pretty receptive to chemotherapy, and while it seems to metastisize more frequently early on (you, unfortunately have experienced this), our prognosis is pretty good if we make it out 5 years or so.  And even the sisters on the metastatic board are doing well, many of them, on the newer chemos, especially the platinum based ones.  I'm just surmising from your post; I hope I haven't overstepped my bounds but you sound kind of panicked and I just want to assure you we are with you!  Hang in there....we all spend our time in and out of denial. *sigh*  Nobody understands like the people on here.

    · Share on FacebookShare on Twitter
  • snowyday
    snowyday Member Posts: 1,478
    edited November 2007

    Thanks they said symptomatic, meaning a tumour can come from anywhere and that scares me.  I am triple negative and not responsive to estrogen, progestron or herceptin, thats why they've been so aggresive with my treatment.  You haven't overstepped your bounds I need info any I can get the worst thing for me is not knowing or understanding. And with the chemobrain understanding is hard I can't wait for it to end, I lose everything can't keep track of shhhttt. I makes me nuts I can't even read a book and thats how I usually fall asleep but I haven't read a book in ages, it was my only relaxation, book valium, gone.  I'm trying to fix it with readers digest and other mags but nothing sticks.  Oh well. Thanks for the support we all really need it. I love this site and the women on it.

    · Share on FacebookShare on Twitter
  • msannie57
    msannie57 Member Posts: 84
    edited November 2007

    Hi Pearl, I think they did mean metastatic and if you go to the section here for women with metastatic disease you will find a lot of support.  Metastatic means that your cancer has spread from the original site and is now in your liver.  The fact that you seem to be triple negative (from what you've said) means that you are dealing with what is considered to be a more aggressive type of breast cancer but one that also responds better to chemotherapy than does a hormone receptor positive one.  Metastatic breast cancer is very often treated as a chronic disease now and one that is treated whenever and wherever it occurs.  Breast cancer usually spreads to certain parts of the body--liver, lungs, bone, brain--and doesn't just go anywhere.

    I encourage you to get on the metastatic board and hear from the very positive women there--it will help you a great deal.

    · Share on FacebookShare on Twitter
  • snowyday
    snowyday Member Posts: 1,478
    edited November 2007

    Hi Msannie:  I will get on the metastatic board your right that's how they explained it, it is inthe liver and now they are checking the bowels lots and lots of pain in the morning got so I wouldn't eat just to avoid it. My sister the rock always makes sure that I eat fibre and sometimes it helps but we'll see. I'll get on the board and read and then hopefully ask questions that make sense and ask the Doctors questions that they will give answers to. Thanks so much Pearl

    · Share on FacebookShare on Twitter
  • corvette
    corvette Member Posts: 41
    edited December 2007

    From what you posted snowyday, your cancer is considered aggressive due to its 'grade' -- you said 'aggressive grade'.  That means most likely grade 3.

    Grade 1 tumor looks a lot like normal cells

    Grade 2 in between

    Grade 3 doesn't look anything like normal cells

    It's not necessarily the triple negative that makes it aggressive.

    And as others have said, the triple negative patients respond much better to chemo.

    And much of the gloom and doom associated with triple negative is the fact that there is no follow up treatment like Tamoxifen or Arimidex for estrogen positive tumors.

    But many women refuse to take those follow up pills.

    You should get a second opinion on your tumor slides from an agency outside the one that did your original pathology. I have seen many posts on bc boards whereas the triple negative was wrong on first pathology report.

    And get a second opinion for your liver tumors.  They have drugs that I have read made the tumors disappear from the liver!

    And if you are eating more fiber you have to increase your water or liquid intake -- if you don't you'll end up with something similar to cement in your intestines.

    Best wishes to you. 

    · Share on FacebookShare on Twitter

Categories