Living in Fear … Here is my Plan when My Cancer Recurs

darjessjake
darjessjake Member Posts: 2
edited October 2017 in Breast Cancer #1

Background:  6 years ago, at age 40, I went for my first ever mammogram to learn that I have Breast Cancer . I quickly had a lumpectomy followed by 7 weeks of radiation (did not have time to think or feel really, was all rushed!). I’ve had a lot of reactions from the radiation as the years have gone by. Too many to list. But I just deal with them as they come.

 

I am luckily in remission now, but frequently wonder what would happen if my breast cancer was to come back- what would I do?

 

So, what is My Plan when it Recurs?

 
I have done a lot of research and have found out a lot of information I wish I had known 6 years ago. In short, I would take a more personalized approach to my cancer, and here is here is my plan:
 
First, since tissue is required to personalize a treatment, I would store my tumor tissue. No one knows that once you have your tumor taken out, it is not preserved in a manner to keep the cells alive.  For that, I would call www.storemytumor.com
 
Second, I would do a genetic test to narrow down the list of drugs that may work on my tumor, and in parallel do a sensitivity assay that tests which drug, experimental drug or combination works best on my tumor.  The results from these tests will help my oncologists pick the right drug or combination that we know has a higher chance of working on my tumor.
For Genetic Testing, see OncoDNA, FoundationOne, Caris and the likes… for Chemo Sensitivity, see Therapy Select, Rational Therapeutics, Mitra Biotech and the likes…
 
Third, I would seek immunotherapy. There are different kinds, but from what I read, cellular treatment option (vaccines and T-Cell treatments) have promising results and little side effects.  They are experimental, but available in different countries.   The idea behind them is to use elements in my tumor to activate my immune system to fight my cancer. Immunotherapy minimizes the chance of relapse. ** apparently this is one of the best tools to stay in remission longer, and to get rid of “residual cancer cells in the body that are always the cause of recurrence” **For immunotherapy, see Unifontis, IOZK, Ventus, and the likes…
In this day and age there is no reason to settle for standard of care when there are better or supplementary options out there. I want to find all these options and be ready!

 

Ladies, what else is out there? What else should I research?

 

Please share feedback on scientific stuff, not yoga, meditation, diet and feel good stuff.  I drink enough wine to stay positive ;)

Comments

  • Elaine_wi
    Elaine_wi Member Posts: 124 Member
    edited October 2017 #2
    Oncotype

    I did not store tissue from my tumor but had an oncotype test done. In this test they analyze the DNA of the tumor. Will these results be of any use if I have a reoccurence?

  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    #3
    Try not to live in fear-

    Try not to live in fear-

     

    The year (2008) i found out I had BC and was called back-i said NAHHHH all is good...but i was told no ....

     

    after my lumpecomty and radiaion i was called back again after my annual mammo- they saw something, but unsure. I had another lumpecotmy on the same side-just in caee-I did have another lumpectomy on the same side (i am very small breasted) thankfully it was just scar tissue.

    IN 2008 i was not given (didn't know any other opeions) choice or lumpecomty or mastectomy -NOR did i know there was such a thing as a BREAST Surgeon-

     

    My first survery was a general surgeon and then second one was breast surgeon.

     

    HUGS..

    Denise

  • Apaugh
    Apaugh Member Posts: 850 Member
    #4
    It will drive you nuts

    Today, I decided to not worry about it.  I am going to live my life. 

  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    #5
    I had  BC 2008 (almost at tne

    I had  BC 2008 (almost at tne year mark) I never worry or even think about my test result from my Mammo. My opinnon I can't worry if /when it comes back, I am enjoying the ride now-while i have smooth sailing.

     

    LIKE I said JAN will be my 10 year, since i was diagnosed. I was on Tamoxifin for 5 yrs. (2 yrs into it i  had a VERY enlarge uterus-so had to have total hyterctomy. (side effect of meds)

     

    Try to think of what you have overcome and not what may be around the corner.

     I had second lumpecomty on the same side-due to they saw somehting years laer in my mammo-i didn't want to wiat and see-it was ONLY  scar tissue-so even though i had surgery-i had a clear mind knowing for sure.

    Denise (JUST MY OPINION)

     

  • inkblot
    inkblot Member Posts: 698 Member
    edited November 2017 #6
    Hey there!

    Hey there!

    Well, I think you've prefaced the bugaboo which all of us who've had BC live with!  What if it comes back?  Honestly, the very nature of BC means we cannot answer that question and neither can the docs nor the scientific community.  All we can do is hit the shore running and don't look back. 

    For me, I didn't focus so much on if it came back or what I'd do if it did.  It was waaay too stressful worrying about it coming back.  I did the healiing work, first.  Gave myself time to adjust to where I'd been and what I'd learned that was useful.  Sifted through and kept what was worthwhile.  That being, elements that added something good to my life, going forward.  The way I looked at it was this:  Once was quite enough, and I did NOT plan on a 2nd go round with the beast!  Which means I also did not plan FOR it.  I mean, what if your cancer didn't return for 20 years?  Or never? What you're researching today may no longer apply, right?  It seems a not good thing to spend those years researching and trying to stay abreast of the latest options in tx for something you may never experience again. 

    But that's me.  We are all different and if researching and planning for "what if's" brings you peace in some way, then that's the thing to do.  Peace of mind is very important.  The more we can let go, the more we can grow beyond and find perspective.  Perhaps you need to fall asleep at night, feeling that you have a good plan in place when and if cancer rears its ugly head again.  In which case it may be a good thing for you.  For now. 

    Love, light and laughter,

    Ink

        

  • phoebesmom
    phoebesmom Member Posts: 2
    #7
    Mine came back after 12 years

    Mine returned in the other breast after 12 years. I have triple negative and am nearly finished with 6 months of chemo. It has been awful. I only had a lumpectomy and rads with the first one. 

    I realize that the odds are not in my favor with this TNBC but I am going to live my life one day at a time and enjoy each day. I don't obsess or stress over the fact that it will come back, not might, but I am positive that it will come back sooner or later because in my 25 years as an oncology nurse, cancer always returns. In my case it took 12 years but it came back.  When that happens I will accept it and deal with it but not hold out any hopes of being cured. I did many years of hospice care too and that taught me a lot about death and dying and what to expect. I am at peace with the knowledge that I am 65 years old and will probably not be around in a few years and while that breaks my heart, I am also at peace. 

     

  • anniemshe
    anniemshe Member Posts: 91 Member
    #8
    I had breast cancer in 2007 n

    I had breast cancer in 2007 n was devastated but did the whole mastectom, chemo n radiation and took tamoxifen for 5 years with little almost no side effects. Went for my yearly check ups n thought it was all over!!! Til it came back this year April!! I was shocked I just never thought it’d be back!!! Now it’s hormone therapy etc. No cure treatment for life!!! It depresses me as I have young children n want to be there for them!!! But it’s not in my hands so I just try to get on day by day. Thank God I have a job that keeps me from over thinking!! 

  • crselby
    crselby Member Posts: 441 Member
    #9

    I had little itty bitty DCIS in 2009.  Lumpectomy and interstitial multicatheter brachytherapy radiation.  When rad iologist saw microcalicifications on mammo in 2015 I wasn't too upset.  I figured there would be another lumpectomy and more radiation.  But a breast can't have rads twice; the tissue will die.  Ukk.  So mastectomy was my only choice.  From MD Anderson docs, that is.  But I got a second opinion from CTCA where they did a lumpectomy.  I asked for the Oncotype DX test to be done on the tissue (brand new for DCIS at that tim) and it showed radiation wouldn't be much help.  So here I am with two smaller, reduced boobs, somewhat numb from the sugeries, but they're my living tissue. Don't ruin your life by obsessing but  just know that there are improvements to treatments all the time. 

     

    ~~Connie~~

  • CCFlowerandScout
    CCFlowerandScout Member Posts: 3
    edited January 2018 #10
    I am with all of you, 2007 and 2017 stay positive sisters!!

    My favorite saying here is "All we can do is hit the shore running and don't look back"

     -Christine, Flower and Scout

     

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