Well. . . Sh*t, sh*t and more sh*t. . .

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weety
weety Member Posts: 1,163
edited June 2014 in IDC (Invasive Ductal Carcinoma)

I just don't know when this madness is ever going to stop. 

Sh*t #1 My dad was diagnosed with pancreatic cancer in October and was just hospitalized with a small bowel obstruction.  They can't do surgery--he is too weak--and they think the cancer is too involved anyways, but luckily it was finally determined to be only a partial obstruction.   But his onc doesn't think he has much time left because of it. He is pretty sure it will just clog up again.  He said my dad probably doesn't have much time left--he said his time left is more likely to be measured in weeks than months. My dad has had a modest response to  the chemo so hopefully it will continue to shrink the tumors at least a little bit to buy him a little bit more time.

S,h*t #2  Because of my dad's pancreatic cancer diagnosis I decided to go back to the genetics dept and try to reopen my breast cancer case (I had tested negative for both BRCA genes).  Well. . . we just found out yesterday that my dad tested positive for a mutation in the PALB2 gene (pancreatic/breast cancer gene that is somehow associated with the BRCA2 gene).  So needless to say, my bloodwork was sent off yesterday to be checked.  I should get my results in a week or so.

Sh*t #3  My younger brother (age 36), right in the middle of all my dad's mess, found a small lump in his breast!  I went with him to the mammogram & ultrasound appt and he just got a phone call from his doctor tonight--Birads 4 and biopsy recommended.

My gosh. . . will it ever stop?

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  • CelineFlower
    CelineFlower Member Posts: 875
    edited December 2012

    OMG.. im so sorry for you and your families pain

    and may i say...

    Fucking cancer!!!

    I know a mother and daughter, who found out last week, together, that they have BC...

    and a baby born to a friends friend in UK... born with cancer.. and will die any day now at 3 months old...

    Cancer... has no preferences... no judgement... it just.. takes...sigh...

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  • Moderators
    Moderators Member Posts: 25,912
    edited December 2012

    Weety, we're so sorry to hear such terrible things going on in your life. We are sending good, positive vibes to you, your dad, and brother too. Please keep us all posted...

    CelineFlower -- so sad about the baby you know, and your mother/daughter friends. You're right -- cancer doesn't discriminate :( So awful.

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  • Denise-G
    Denise-G Member Posts: 1,777
    edited December 2012

    Weety - My father died of pancreatic cancer at age 65.  I am very sorry you are going through all of these issues.  Any one of them is horrible on their own.

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  • weety
    weety Member Posts: 1,163
    edited December 2012

    Thank you ladies for all of your kind words.  I know you understand.

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  • Blessings2011
    Blessings2011 Member Posts: 4,276
    edited December 2012

    weety - your title says it all. 

    So sorry....big hugs to you.....

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited December 2012

    weety - bummer - sorry this is happening.  I have walked in your shoes, so sending you hugs right now.

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  • Threekids
    Threekids Member Posts: 1
    edited December 2012

    I'm so sorry for you Weety.  This is the first time I've looked on this site.....so forgive me if I'm putting this in the wrong place.  I had a left mastectomy November 29 and will have the first injection of saline tomorrow into the expander.  But since my mom died of a type of ovarian cancer, and my maternal grandmother had breast cancer, I had the BRAC in June, which was negative.  Once I was diagnosed on 3D mammogram in October, my breast surgeon suggested the BART, even though the BRAC was negative.  If it had been positive, I, and possibly my children, could have a much higher chance of breast cancer, melanoma, prostate for my sons, and pancreatic.  So there seems to be an association here, right?  So why aren't they doing the BART with the BRAC, financial reasons?

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  • weety
    weety Member Posts: 1,163
    edited December 2012

    Threekids,

    I already had the testing done for BRCA 1 and BRCA2 back in 2009 when I was diagnosed.  Both came back negative.  I also had the BART done a few weeks ago--negative as well.  From what I understand the PALB2 gene works somehow in conjunction with BRCA2, but it is a totally different gene.  PALB2 mutations are  associated only with pancreatic cancer and breast cancer (and possibly prostate?) It is a different test.

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  • LoveUMum
    LoveUMum Member Posts: 11
    edited December 2012

    Hi Weety

    Hang in there.

    My mom was diagnosed with BC in Aug 2012. I just finished caring for her to complete her treatment.



    We were about to start "living normal" again.



    Then, my Mom sister pays a visit to do US and Mammo. Bang.....she is also diagnose with BC on 25th Dec. I'm her caretaker as well.



    Now got to start again.



    What a luck. I fear any US and Mammo



    Hang in there. It will get better.

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  • weety
    weety Member Posts: 1,163
    edited January 2013

    So after a mammogram, a biopsy, and lots of waiting, my brother found out the lump was just a fat deposit.  Whew......  Now I am still waiting to hear the results of my genetics test for the PALB2 gene.

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  • ReneeinOH
    ReneeinOH Member Posts: 511
    edited January 2013

    While genetic testing gives answers for some, my (very recent) knowledge on the subject is that they can very well figure out other gene mutations, etc. in the future that plays into different BC scenarios.  (In other words, we don't know everything about the genetic links to BC.) I'm waiting for GT results, but my BS is recommending removal of my healthy breast as well because of my family's cancer history and my age (45).

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  • weety
    weety Member Posts: 1,163
    edited January 2013

    Well, I tested postive for the PALB2 gene.  I guess that's why I got BC at 38.

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  • pacools
    pacools Member Posts: 53
    edited January 2013

    Weety does that increase your risk for pancreatic cancer in the future? If so what monitoring methods do they have? Good news on your brother glad he was aware of the changes in his body.  I am sorry for your father I hope he can be comfortable.

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  • edwards750
    edwards750 Member Posts: 3,761
    edited January 2013

    Weety you nailed it with shit and more shit...sorry about your father. At least your brother is okay. My sister in law and my sister and I all got BC. Sister in law's was insitu and over 5 years ago. So far, so good. Mine was dx in January 2011; Stage 2, Grade 1 Lumpectomy, Rads and tamoxifen and sister was DX in October 2012 with ILC. She had scans and scans. Had to collapse her lung and remove a lesion that had been there, according to the drs, for a very long time. She didnt have to have chemo or Rads though b ut they did do a MX. She is on Arimidex. Cancer is just rampant and not discriminatory. Neither my sister nor I had the test even though my mother had BC in her late 60s. She died 20 years later but not from BC. People are desperate to find some kind of connection like a friend of mine who says I got BC because of my mother. Maybe, maybe not. Drs say the vast majority of BC cases are women w/o genetic connections. Go figure. Doesnt matter we just got a bad draw. Good luck. Keep us poster. Diane

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  • lekker
    lekker Member Posts: 594
    edited January 2013

    Kayb - the known BRCA mutations aren't the only possible genetic factors for developing breast and other cancers.  With your family history, you might consider speaking with a genetic counselor.  They will take a detailed family history, called a pedigree, and determine the liklihood that your cancer has a genetic cause.  With that guidance, you can consider if you want to pursue testing.  Before you speak to the counselor, it would be helpful to have as much information about your family (especially siblings, children, parents and grandparents - aunts and uncles too if you have it but it's not as important as the others).  This includes history of illness, especially cancer (ALL cancers - not just breast), and cause of death with as many details as possible.  You are triple positive so try to include your mother and sister's receptor status as well.  Also, what kind of pancreatic cancer?  If a relative had ovarian cancer, was it epithelial, germ cell, etc? 

    When your sister was tested for the BRCA mutations, do you know if she had the full sequencing plus the BART test?  If she still has the report, you should bring a copy of it with you to the counselor if you choose to see one.  There are a few genetic cancer syndromes where the family history immediately raises red flags (breast and ovarian, colon and uterine, diffuse gastric and lobular breast, etc) but there are still many unanswered questions.  While the cost of whole genome sequencing (WGS) goes down every year, the understanding of our genome is only in its infancy.  A good genetic counselor should be able to determine what, if any, likely genetic factors might play a role in your family and then suggest testing (if it's available) to validate the theory.  I'm going through the process now and I haven't found any answers yet.  The NCI's page about cancer genetics might be a good resource for you to learn more about the current state of cancer genetics knowledge: http://www.cancer.gov/cancertopics/genetics

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  • weety
    weety Member Posts: 1,163
    edited January 2013

    The PALB2 is pretty new.  3 years ago, it was not available.  When my dad got diagnosed with the pancreatic cancer this year, I called the genetic counselor that I had seen 3 years ago to "reopen" my case.  She told me about the PALB2 gene, it's connection between breast and pancreatic cancer, and had my dad tested first.  When his came back positive, she tested me.  From what I understand, the PALB2 gene is closely related to the BRCA2 gene.  It is known as the BRCA2 helper gene. PALB2 is short for "partner and localizer of BRCA2"   I haven't done enough research on it to explain much more.  It is very rare and we are the first family that she has come across that has tested positive.  I wonder if it is only rare because it is new and not very widely tested, though. She thinks it may have stronger implications to breast cancer than to pancreatic cancer.  But again, not enough research or knowledge about it yet, as it is still in the early stages of testing and understanding. 

    As for  monitoring me for pancreatic cancer, I don't know yet.  I do have an appt in a few weeks with my onc to discuss it, but I'm not really sure there are very many monitoring tools for pancreatic cancer to begin with.  I am guessing ultrasounds will be one way to monitor it, but from my understanding, the pancreas is behind the stomach and very difficult to see even on an ultrasound.  I think right now, they are most concerned with the breast cancer risk since I did not do double mastectomy.  I have a feeling I'll be having another surgery soon to get rid of the other side.  Ugghh... I don't want another surgery...whine, whine, sigh, whine, whine...

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  • weety
    weety Member Posts: 1,163
    edited January 2013

    Also, thanks for the well wishes for my dad.  Actually, he has had a little reprieve--the chemo has been doing it's job and his symptoms (as well as his tumor markers) have been going down.  I don't know how long it will last, but we are thankful for the extra time it is giving him.

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