The tables have turned

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Kathatescancer
Kathatescancer Member Posts: 2
edited December 2014 in Caring for Someone with Breast cancer

I was diagnosed with stage 2b pure mucinous carcinoma on my 30th birthday (I'm 33 now). I had two lumpectomies and 35 rads, and I refused tamoxifen. All things considered, I think I may have gotten off easy on the cancer spectrum.

I had genetic testing done, because I have a sister, and the results came negative for BRCA 1&2.

It took me about a year to fully get my energy back, and I still struggle with the emotion of it all, but I let my experience serve as an eye opener for me- I changed my life following cancer- quit my job, got out of a bad relationship, started eating healthy, avoiding carcinogens, and I'm now a year away from graduating nursing school.

I thought I was okay, but yesterday, my sister phoned me to tell me that she has been diagnosed with a 2.6cm invasive ductal carcinoma.

I'm floored. I don't know how to handle this! I don't have the cancer genes, but now my 35 year old sister has a different but similar type of cancer than what I had? I don't understand.

And, I don't understand how to handle this. I am so sad she has to deal with this- she has had a difficult life, and has worked so hard to get herself to a healthy place- she just arrived! And from her diagnosis, I think she is going to face way more treatment than I had to.

And what about my poor parents? Their only two children now both have (or had) cancer? On the 16th, I go for my yearly checkup. The same day, my sister will be having surgery in the same hospital. How is this just? What can I do to make my parents feel better? They are strong and supportive, but I know that they are feeling so much sadness.

And what of me? Should I repeat the genetic testing? Should I get tested for other genetic mutations? What if the cause is actually one of the scary mutations, like p53, that will mean a lifetime of tests, a shortened life... Do I tell my sister? Do I wait until she is better? What if she doesn't get better? Furthermore, how on earth am I supposed to tell my parents if my oncologist finds anything worrying when I see her on the 16th, while my sister is in surgery?

I can't talk to anyone about this- my family has too much hurt right now, and I need to be strong for them. But I am not feeling strong- I feel totally sad and overwhelmed.

I hate breast cancer

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  • Susug
    Susug Member Posts: 193
    edited December 2014

    Kathatescancer, I'm so sorry your sister has cancer and your family is going through so much. I had genetic testing. I am a identical twin. When the test came back neg. I was ????? We're identical twins how canthat be. I was concerned but what do you do. I still think there is a gene out there that they still don't know about.i will pray for you and your family. Sus

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  • Janetanned
    Janetanned Member Posts: 532
    edited December 2014


    Kathatescancer - My sister was diagnosed a year before me. She had a lumpectomy (DCIS) and radiation.  When I was first diagnosed, I thought I would be going the same route.  Unfortunately, my cancer was found to be invasive with 3 positive nodes, so I needed chemo and a BMX.  Since my mother also had BC, we were pretty certain that there was a genetic factor.  I was first tested for the BRCA I & II gene mutation.  My sister also was tested for this mutation.  Both came back negative.  I was then tested for the PTEN mutation (Cowden Syndrome).  Again this test came back negative.  The geneticist I saw feels that there is a genetic relationship that has not yet been verified.  Our histories were placed in a database and I will be contacted should new genetic testing become available.

    My father was older (97) when I was diagnosed and I didn't want to worry him, so we never told him.  I just scheduled my treatments around visits and he never knew what was going on.  We also kept this information from my aunt (Mom's sister) since she was also elderly and dealing with her own issues.  It does get tricky when dealing with others and their worries.  As a mother, I would try to put my own concerns aside in order to support and care for my daughter should she be faced with this disease.  Maybe you won't have to be so strong. 

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  • Jenwith4kids
    Jenwith4kids Member Posts: 635
    edited December 2014

    Hi Kat, I just got back from spending the day with my sister helping her after her second reconstruction surgery. She and I (ages 47 and 44) were diagnosed two weeks apart, had surgery ten days apart and started chemo a week apart - Both of us on Thursdays, me in NJ, she in PA. We both tested negative for BRCA. We are our parents only children...it's been a hell of a year. PM me if you want to talk. Hugs.

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  • AmyQ
    AmyQ Member Posts: 2,182
    edited December 2014

    I have two sisters and two daughters and have thanked The Lord they have not had to endure what I have. However I can imagine how devastated you must feel, now knowing she will experience her own personal grief. Something I do not wish on my enemies. My sympathies to you both.

    Amy

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  • leggo
    leggo Member Posts: 3,293
    edited December 2014

    I'm so sorry Kat. Anyone would be overwhelmed. I read your post yesterday and was at a loss for words. Life is so unfair sometimes. I very much admire you for staying strong. I would've fallen apart. You and your sister will be in my thoughts.

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  • breastcancerhusband
    breastcancerhusband Member Posts: 85
    edited December 2014

    Kat

    I felt the need to post something,  although my words are worth nothing. I'm genuinely sorry to read your news. 

    Please God your sister will be ok. 

    Vent your anger

    Thoughts, love and prayers

    xxx

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  • DiveCat
    DiveCat Member Posts: 968
    edited December 2014

    I am so sorry your sister is now facing a breast cancer diagnosis.

    It sounds like you are an uninformed negative. It is possible that both your sister's and your cancers were sporadic, or yours was sporadic and hers is related to a mutation, but given the ages, it is also very likely there may be something genetic going on but something that cannot yet be identified - or at least was not identified in your original testing. If you look at families with a breast cancer history that indicates hereditary factors, only about 25% of THOSE families will have an identifiable mutation (usually BRCA 1 or 2). The others have unknown factors, it may be a single mutation that is not yet known (and may be or may never be known), or it may be a combination of genetic changes (polygenic). My family is one of those that falls into the category of there being an obvious pattern of breast cancer, but no known genetic mutation at this time.

    I do encourage you and your sister to go back and speak to a genetic counselor, as yes, there can be other genetics they may be able to test for but they will have to review your family history to determine what testing may be appropriate, if any.

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  • Moderators
    Moderators Member Posts: 25,912
    edited December 2014

    Gentle hugs to you and your sister. We are truly sad to read what you are all going through.

    We too suggest that you talk with your genetic counselors. Although there may not be a known genetic connection, there may be steps that you or your sister would want to take to reduce your risks of another cancer.

    For more information on genetic testing, counseling, and support, visit the FORCE (Facing Our Risk of Cancer Empowered) website.

    As for your parents, it will be hard for you to protect them. It may be very helpful to stay open and connected to them about your and their feelings. Sometime illness can bring a family even closer, and make everyone stronger.

    Share with us any time, and know you can just be who and what you are feeling!

    (((hugs))))

    p.s. we hate cancer too!

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  • mamabee
    mamabee Member Posts: 546
    edited December 2014

    Kat, Hugs to you and your sister! I was diagnosed with BC at 47, my sister at 43. Three years ago when I was first diagnosed I was tested for the BRCA mutations and was negative. I went to new oncologist this year, who has an interest in the genetic basis of cancer. Based on my sister and my diagnoses and a family history of BC, she recommended I do more genetic testing. Guess what? I have a mutation on the PALB2 gene. It's only been recently that PALB2's relationship to BC was recognized and since I'm not aware of any pancreatic cancer in our family (which is also how a PALB2 mutation can affect someone) we were never tested. My oncologist said I was the 3rd one of her patients with this mutation, so maybe it's not so rare? Just a suggestion if you're interested in any more genetic testing.

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  • Susug
    Susug Member Posts: 193
    edited December 2014

    Mamabee,I had genetic testing in Sept. They did a25 genes panel. My twin sister had brast cancer. My mother had pancreatic cancer. I just got my paper work out to see if they tested for PLAB2 and they did mine is negitive. My sister is deceased so they don't know anything about her cancer. I was with her through the entire ordeal but Ididnt have all the info from a forum like this.

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  • Geo
    Geo Member Posts: 21
    edited December 2014

    I'm positive for palb2, same as my mother and the doctors believe my grandmother ( mother's side) was also positive. Askto get tested for palb2, it still considered a new mutation and doctor don't know too much about it.

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