Asians with tri-neg?

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  • ipohgirl
    ipohgirl Member Posts: 85
    edited February 2009

    Ladies,

    Did lumpect on 10/2, back home since Friday, No pain, just sore underarm for the SN dissection,

    Margins were all clear for two lumps and SN was negative!! Hoorah!

    Still haven't got back the results for the receptors yet, surgeon will discuss only on friday,

    how much did you gals pay for the BRCA? I am in HK, and they are demanding HK $35,000 or over US $4,000 or one third of my surgical fees....

    i thought of sending over some tissue to the US if the costs are cheaper. I have two children, so I want to find out for their sakes.

    also, how come they are taking such a long time to find out about my receptor status?

    cheers and hugs

    ipohgirl 

  • defeatbc
    defeatbc Member Posts: 53
    edited February 2009

    Hi Alex.

    I didn't have radiation.  Sorry, I can't answer your question on radiation. Perhaps the other ladies can help.

    As for Reishi (Ling Zhi) and Yun Zhi (Turkey Tail), those are medicinal mushrooms that are used in traditional Chinese medicine.  They both have a "wood like" texture -- too hard to chew, but can be boiled in water as tea.  They boost your immune system, have antioxidants, and are being studied as cancer treatments.  They are also very beautiful ornamental mushrooms.

    I've been drinking Reishi as tea.  It's somewhat bitter, but not bad all.  Quite refreshing.

    I have yet to try Yun Zhi.  (See Kelty's thread)

    Hoa (defeatbc)

  • MargaretB
    MargaretB Member Posts: 1,305
    edited February 2009

    ipohgirl, I had the BRCA testing done but it was covered by my insurance.  I can't remember what they told me the cost would be if insurance didn't cover it.  My testing was done by Myriad Genetics in Salt Lake City, Utah.

    Good luck.

  • pennyt2
    pennyt2 Member Posts: 1
    edited February 2009

    Hi there!  I'm a newbie here.  I'm 47 yrs old, Filipino, maried, with 3 teenage boys, living in LA County for more than 22 years. Diagnosed with TNBC on 8/08.  I completed AC (1: 3 wksx4) on Dec, and I'm will be done with Taxol (1:wklyx12) on March 4.  

    I'm interested chatting with fellow Asians and non Asians who have BC.  

  • ipohgirl
    ipohgirl Member Posts: 85
    edited February 2009

    dear margaret,

    thanks for the info.

    just got my receptor status today.

    ER (+), PR (-) and HER (+3)

    I guess I should do the BRCA becoz of my HER status.

    will check with doc whether she will help.

    hugs,

    ipoh girl.

  • tibet
    tibet Member Posts: 545
    edited February 2009

    Kelty

    How does Yun Zhi write in Chinese so that I can ask my parents to bring next time from China.

    Hoa,

    Where did you buy Lin Zhi? Is it a power you drink?

  • kelty
    kelty Member Posts: 80
    edited February 2009

    Newalex,

    Yun is as cloud.  Yun zhi's extract commonly used in Japan is PSK, the extract more commonly researched in China is PSP.  The main difference is the extraction method.  From what I found online there's not enough data to show the safety and efficacy of PSP for BC. So be careful if your parents are trying to get some in China.  You can find both PSK and PSP as supplements from online stores in US. I don't know if you can get the Yun zhi itself in US.

  • defeatbc
    defeatbc Member Posts: 53
    edited April 2009

    I get Ling Zhi from various Chinese medicine/herb stores around Monterey Park, Ca.  Wing Hop Fung is one of the most prominent ones near where I live.

    http://www.winghopfung.com/ 

    I buy it in its whole-dried mushroom form, and ask the store attendants to chop it up into chunks for me.  I don't reccomend you chopping it up yourself -- it's very hard!

    I believe you can get it as a supplement, but I prefer boiling it into a drink.

    If any of you ladies know of other sources, please chime in  :)

  • kelty
    kelty Member Posts: 80
    edited February 2009

    ipohgirl,

    I was told that the cost for BRCA testing is $3600 and there's only one lab certified to do this test in US.

  • S3K5
    S3K5 Member Posts: 606
    edited April 2009

    Hi,

    I just found this thread about asians and BC. I am an asian (Indian) - DX in March 2008; Not triple negative. Have been eating healthy and have been active all my life! No family history either.

    Guess, BC doesn't discriminate - I have seen it in all nationalities, ages and groups!

    Take care,

    Desi.

  • BWorrier
    BWorrier Member Posts: 58
    edited May 2009

    I am Asian (Chinese), just dx this month and haven't taken any surgery yet, will get path report after then.



    I read a lot from this website and internet, I myself don't think food, age of delivering baby or nursing babies are the key factor to turn normal cells to mutant (cancer cells). I know lots of women who eat unhealthy food a lot, don't nurse baby, delivered babies very late, and most of them are just fine. Some women's tumor turned to be huge size but still B9 and never intend to be cancer. We are a special kind with cancer gene inside the body, but there ARE some factors to trigger them and speed them up for growing, eg. hormone level change.



    I am 42 and considered as "young" as a BC cancer in North America, but in China I am not. In China the high risk age range of BC is 41 - 45 which is 10-15 years earlier than western people, also in China women's menopause is earlier than western women, so, please do remember that each individual has different situation.



    BTW, I just moved to NA 4 years ago, when I went back to China I told my dad some fruit here have very beautiful color and the size is very much bigger than those small "ugly" fruits he bought from farm in China. Then he joked: "How do you know they didn't use transgene technology to make the fruits look that 'beautiful'?" Well he was just joking, but who knows.



    Hi, ipohgirl,

    You should benefit a lot from Herceptin? I heard it's good.



    I also don't understand why you TN girls don't receive any further treatment?

  • pinkdove10
    pinkdove10 Member Posts: 80
    edited July 2009

    Hi

    I am Asian Indian , living in Mumbai ,India.  I am Tri-Neg.  Just finished with chemo- 4xEc and 4x Taxotere .  Will start Rads soon.

    Lsts keep in touch

    Uma

  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2009

    Hi.  I am a Filipino woman dx'd in 2005 with stage 1 TNBC.  Tumor was <1cm.  Had AC chemo and 33 rads.  On Tuesday I have an appointment to biopsy suspicious mass in the same breast.  It could be some fibrotic tissue that is growing, but probably more like cancer.  Again!! Please keep me in your thoughts,  Thanks

  • defeatbc
    defeatbc Member Posts: 53
    edited August 2009

    Adnerb,

    You are in my thoughts.  This cancer thing is so inconcievably unfair!

    Hoa (defeatbc)

  • tibet
    tibet Member Posts: 545
    edited August 2009

    Adnerb

    Do you have result yet from the biopsy? Hope it was B9. Pls let us know here. 

  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2009

    Thanks, Hoa. I appreciate it.

  • nitsis1
    nitsis1 Member Posts: 2
    edited August 2009

    Hi everyone,

    I 'm new to this site..My sister is the one that actually has cancer.This is her 2nd time with cancer the 1st being 4 years ago at age 33  stage 2 and this time stage 4 dx April 09 ..We are chinese/black,she's triple neg.and we are still waiting to see if she carries the BRCA2 gene.It's really nice to know there's a place to go and see how many people are fighting right along with us.Sad that there has to be such a place but to know we're not alone and we can see it's not the END..I'm saying we because my sister and I are so close I feel like I'm fighting it right along with her..All you ladies inspire me..

    Live life to the fullest

    nitsis

  • tibet
    tibet Member Posts: 545
    edited August 2009

    nitsis

    Was the second time a recurrence of the first time or a new primary? Was her first time a triple negative?

    Do you have any family history in your dad and mom sides? 

  • nitsis1
    nitsis1 Member Posts: 2
    edited August 2009

    Hi newalex,

    The second time is a recurrence of the first time..she was estrogen positive the first time..Our dad's side of the family has a history of cancers his aunt and cousin had breast cancer and 2 uncles had lung cancer..Now as for our mom's side i can't say, she hasn't been around for over 19 years..

  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2009

    How can you be sure if it is a recurrence or a new primary?  I've asked many people and I get different answers.

  • tibet
    tibet Member Posts: 545
    edited August 2009

    nitisis1

    If your sister's first time was estrogen positive then the second time is triple negative, then the second time has nothing to do with the first time and it is therefore not a recurrence but a new primary.

    Based on what I read, recurrence usually has the same type receptors as the first time. For triple negative, after 4 years, it is rarely a recurrence of distant mets but possibley a local recurrence. For ER positive, it can recur even after 20 years.  

  • tibet
    tibet Member Posts: 545
    edited August 2009

    Brenda

    Was your first time TN? What kind of chemo did you have? How big was your tumor? and nodes? 

  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2009

    Newalexl, the first one was TN.  I only had a lumpectomy, AC and rads.  This new one is TN and very slightly er positive.  It is very close to the original site.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2009

    Oh, and no nodes (SNB was negative for cancer) and the size was less than one centimeter.  This new one is huge and grew overnight.

  • Vicki26
    Vicki26 Member Posts: 27
    edited August 2009

    Hi everyone,

    I am new to this froum. I am a 26 years old Chinese woman, and i dx TNBC on April this year. I just finished neo.adj. Chemo with 4 cycle of AC and 4 cycle of T and waiting for the operation. So scary right now. Any young woman has the same situation with me can share their stories?

  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2009

    How big is your tumor now after the chemo?

  • Vicki26
    Vicki26 Member Posts: 27
    edited August 2009

    Almost gone after the chemo. But still feel some pain in my breast when i touch it.

  • tibet
    tibet Member Posts: 545
    edited July 2012

    hi Vicki26

    Do you live in China right now and received treatment there or in the US? Do you have family history of BC?  I heard Asian women have BC at earlier age than westerner. I am too an Chinese.

  • Vicki26
    Vicki26 Member Posts: 27
    edited August 2009

    Hi Newalex,

    I Live in USA, California. I don't have family history of BC. and the doctor told me that is rarely to woman at this age have  BC. Great to meet you here, do you speak Chinese? May be we can talk in some day!

  • mesha
    mesha Member Posts: 7
    edited September 2009
    Mum is Sri Lankan, 50yo. Just diagnosed with triple negative breast cancer, Grade 3, 3cm and Stage IIA. No node involvement. I think her cancer blew up after the biopsy because it was 1.5cm beforehand... does that happen? My mum said its possible that the bleeding can cause it to become larger... which might be why she has no nodes despite having a decent sized cancer. 

    Anyway, its so scary to read through this site because I want this to be a little stupid thing that will go away forever! I started to feel that way until the triple neg diagnosis... now I don't know what to think! 

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