TRIPLE POSITIVE GROUP

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  • lago
    lago Member Posts: 17,186
    edited April 2013

    Karenrm I found that Metamucil as directed worked really well for constipation. It's a stool softener but doesn't upset the stomach. I didn't take any narcotics (they make me feel nauseous) but chemo gave me the big C.

    Dana implants can be challenging with radiation but many women do manage to get it to work. I know of 1 friends that had no issues. one other did and required a few more surgeries. I also know a gal who had issues due to infection and she didn't have rads. So it's a crap shoot. I think it really depends on your skin. The 2 that had issues, both are over 60 and have really light skin. I think you need to see what kind of damage rads does to your skin. You can always change your mind. I have another friend that decided after being fully expanded to do one of the other procedures. BTW I do have implants, no issues but like I said I didn't do rads so not the same thing.

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  • Eileenohio
    Eileenohio Member Posts: 460
    edited April 2013

    Dana,  I too have been wondering why you are stage 2 with such a small tumor? .   Eileen

    I am going to a breast cancer survivor group tonite hosted by my cancer center. I hope to be able to share and learn from the group. A little nervous because I know I will be the oldest one there,sometimes I feel a little out of place and uncomfortable  with all the sex talk.  

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  • lago
    lago Member Posts: 17,186
    edited April 2013

    Post removed because no longer relevant.

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  • Eileenohio
    Eileenohio Member Posts: 460
    edited April 2013

    Lago,  did not know it was against the rules and I am from the old school,I trust everyone.   Thanks I removed my number.

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  • TonLee
    TonLee Member Posts: 2,626
    edited April 2013

    Lovetodance,

    I had TE and rads...was even expanded DURING Rads...I have a perfect frankenboob.

    Also, statistically about 30% of reconstructions fail for some reason.  Radiation falls into one of those areas, but doesn't mean automatically it will happen.  IT didn't with me.

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  • TonLee
    TonLee Member Posts: 2,626
    edited April 2013

    Ok, I have some stuff to share!

    Met with my Onc today.  He was really patient, listened, looked things up right then and there and SHOWED me!  lol  (Which is nice since he pays to get access to all those journals!)

    1st ...Ok AA this is for you.  He said, and showed me some new studies out this month (in the endo journal), that low dose testosterone does help fight Breast Cancer.  I mentioned the study I found and linked here, and he said as of right now it is absolutely an option and a single study won't change that.  So put in a referral for me to talk with my Endo about it.   (edited to add:  He has never prescribed it....but in light of the new article in the endo journal would research it and prescribe it to me if my endo won't do it for some reason.  I dunno...I'm finding a lot of articles now, (still researching it) about a connection ... ~sigh~ nothing is ever cut and dry.)

    So can I ask how much of it you get?  Is it a shot?  A pill?  WHAT??  lol

    2nd... I will be on Tamoxifen for 10 years.  (Since I like it, but if I were on an AI, same thing.)  He said, "So just plan on at least 10 years."

    3rd...The chances of heart damage do NOT go down in the first 5 years after tx.  I will be monitored for at least that long, but since I had a problem during tx with Herceptin heart damage, likely much longer.

    4th...The DHEA vaginal cream trial is now closed.  I am still using it.

    5th... The final verdict on soy.  Once in a while, a couple times a month, eating tofu or hot and sour soup, no big deal.  No soy milk or soy lattes, food is ok in small amounts.  And no big deal if supplements have soy oil, so long as it's not a handful of them a day.  He wouldn't be comfortable with multiple supplements with soy.

    It was good to talk to him.  It's nice that he's able to use his data base and just pull clinical information up and read it with me.  Since it usually takes me a long time to find it.

    Everything he told me pretty much backs up what I've found on my own, but it was good for me to have him show me his sources.

    That's all for now!

    Have a great week :)

    t

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  • LeeA
    LeeA Member Posts: 1,660
    edited April 2013

    That sounds like a very productive meeting, TonLee!  I just took a screenshot of your post.  Lots of information there.  

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  • elkatho
    elkatho Member Posts: 159
    edited April 2013

    Has anyone been in this situation? Met with BS who informed me that the first time the cancer was tested it was her2 positive and the second time tested it was negative. She is referring me to a MO who will look at it closer...maybe do some more testing on the tumor. I was expecting chemo with my herceptin and some what prepared for it but now I am nervous that my treatment plan will be more of a guess. I did not ask many questions as I think the MO Will be the better one to ask....and what to ask???



    Thanks All

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  • LeeA
    LeeA Member Posts: 1,660
    edited April 2013

    elkatho, there are two tests for Her2.  This is an older 2005 article but it gives an explanation of the two tests.  

    http://www.cap.org/apps/cap.portal?_nfpb=true&cntvwrPtlt_actionOverride=/portlets/contentViewer/show&cntvwrPtlt{actionForm.contentReference}=cap_today/cover_stories/0805HER2.html&_pageLabel=cntvwr

    My biopsy showed Her2 (immunohistochemistry - IHC).  My oncologist had a FISH test run (fluorescence in situ hybridization) to make absolutely sure and it also showed Her2.  

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  • lago
    lago Member Posts: 17,186
    edited April 2013

    elkatho it's very possible. The first test might have been the IHC. It's not are reliable as the FISH. If you tested 2+ on the IHC it's unequivocal and they always retest with FISH. Given that you are grade 2 it makes it even more possible. Not that there aren't HER2+ that are grade 2 but more of us are grade 3.

    Also part of the tumor might have been DCIS. I know mine was. It's not unusual for DCIS to be HER2+ but doesn't always mean the invasive part will be.

    But not being HER2+ is a good thing. It means a less agressive cancer.

    Your MO can fill you in with more info than your BS. This is her/his specialty.

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  • elkatho
    elkatho Member Posts: 159
    edited April 2013

    Thanks LeeA and Lago. I know my biopsy was tested with the IHC as I have a copy of my path report from biopsy but I did not ask for the path from the tumor. I scheduled an appt with my MO for Tues the 23rd...not too long.



    I read this post daily and appreciate all your wisdom and thoughts.

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  • navymominohio
    navymominohio Member Posts: 24
    edited April 2013

    Elkatho--I sent you a private message.  

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  • Eileenohio
    Eileenohio Member Posts: 460
    edited April 2013

    Debated on weather to share this or not,but here goes in hopes it will help someone.  Found out about a new use for Olive Oil at a breast cancer survivor group this afternoon. For you young ladies with vaginal dryness this group says olive oil is a great lubricant.   I also found out that breast cancer patients have an increased risk of melanoma. Don't remember if melanona has been discussed before but thought I would mention it just the same..

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  • ChickaD
    ChickaD Member Posts: 1,025
    edited April 2013

    SpecialK....just noticed you live in Tampa...so does my best friend...we also have a house a in North Fort Myers

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  • ArleneA
    ArleneA Member Posts: 1,309
    edited April 2013

    Amazing post TonLee.  I have my 3 month check up Wednesday and will address some of these things with my onc. 

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  • ChickaD
    ChickaD Member Posts: 1,025
    edited April 2013

    I too am confused about the stage II...I thought that doesnt even get confirmed until after my surgery this Thursday....but my path report definitely says grade 2, stage II. Still learning so much every day...a bit nervous today.

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  • ChickaD
    ChickaD Member Posts: 1,025
    edited April 2013

    EileenOhio.....I had Melanoma about 4 years ago....during my surgery this week they will be specifically looking for a correlation in the cells....my plastic surgeon specializes in both breast cancer and melanoma.

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  • Omaz
    Omaz Member Posts: 5,497
    edited April 2013

    TonLee - The latest paper in the Lancet about the ATLAS results for tamoxifen for 10 years doesn't say anything about HER2+.  Did your doctor say anything about it?  In other words, does the benefit apply to ER+HER2+ ?

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  • ArleneA
    ArleneA Member Posts: 1,309
    edited April 2013

    Hi Omaz.  Good question although I'm on Arimidex and need to ask about it this week too.  I am hoping only 5 years. 

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  • ArleneA
    ArleneA Member Posts: 1,309
    edited April 2013

    Breast Cancer and Melanoma and vice versa.  Appears either puts you at risk for the other! 

    http://www.skincancer.org/skin-cancer-information/melanoma/melanoma-causes-and-risk-factors/melanoma-and-breast-cancer-a-new-warning

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  • lago
    lago Member Posts: 17,186
    edited April 2013

    EileenOhio I have heard of that. I am concerned that any oil based lubricant promotes bacteria. I don't recommend trying this until after one finishes chemo.

    DanaM the staging is done on the final path when the tumor is removed. If you have chemo first then you get a "clinical" staging based on the biopsy and imaging. Not as accurate.

    Omaz my NP indicated that the ER/PR part is treated separately. That's why we get Tamox or AI.

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  • cypher
    cypher Member Posts: 508
    edited April 2013

    Dana, do you ahve more than one lump?  I was confused about the stage II part as well.  For you I mean.

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  • TonLee
    TonLee Member Posts: 2,626
    edited April 2013

    Omaz,

    What Lago said...ha.

    But no he doesn't differentiate.  Unless they can prove it doesn't do any good, or is harmful, he wants me on it "at least" 10 years.

    Also I've read that once damaged DNA replicates itself.  It is forever in the body.  Well, the template for it is there.  It may be dormant but given the right "food" will grow again.  Estrogen fed my tumor.  It seems logical to me to stay on an estrogen blocking drug for life. 

    Isn't the whole reason we take Tamox/AI to help starve any remaining cancer cells while eliminating the sustenance for new ones? 

    I already know my body has a pre-disposition if you will, toward making cancer with estrogen.  Why 5 years was the "magic" number before baffles me.  Like my body will forget or something?

    I won't be surprised if data comes out in the next 10 years that shows women who stay on an AI/TAmox have less recurrence of the original BC.

    Though they will likely be dying from other estrogen depleted issues...

    Anyway, just my thoughts.  I don't want to take Tamoxifen for 10 years, but I really don't want my cancer factory to kick back on either, and if it does, I'd rather starve it out...lol

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  • TonLee
    TonLee Member Posts: 2,626
    edited April 2013

    I hate to see the BC skin cancer relation.  I am an outsider by nature, from spring to late fall.....and I don't wear long sleeves and cover up....though I do wear sun screen, it obviously isn't enough because at the end of the season I'm pretty brown. :(

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  • Omaz
    Omaz Member Posts: 5,497
    edited April 2013

    TonLee - Just wonderin! Glad they did the study and the sample size was large, over 6,000 ER+ women. I just feel a little uncertain when treatment recommendations change based on one or two studies.  Hopefully this change (10 years) is based on several studies!  Here is a link to the Lancet abstract if anyone is intersted LINK 

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  • ashla
    ashla Member Posts: 1,581
    edited April 2013

    I told my MO that I read about extending tamoxifen and the AI's to 10 years . He said you've only been on it 9 mos let's wait and see. .. 4 years from now things can change.

    Didn't know about the melanoma risk associated with BC. Had never seen a reference but yesterday my MO saw that my skin was tanned ...just from being outdoors, swimming etc even thoughh I use SPF 55....and he told me " we don't like that". He never specifically mentionned a breast cancer risk. Just assumed generally .

    My friend's daughter is a dermatologist. You would not believe the process and clothing requiredn for a swim in the pool!

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  • ffranny
    ffranny Member Posts: 16
    edited April 2013

    Wow, I wish my surgeon had done that -- and he's been doing these things for 25 years! You'd think every breast surgeon would automatically do it. Whyever not? 

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  • karenrm
    karenrm Member Posts: 69
    edited April 2013

    Thanks everyone for the encouraging words. I feel so much better today (even managed a short walk in this beautiful spring weather!) It's amazing what a good night's sleep will do for you. My snoring kept the hubby up, though, so he removed to the guest room. Slept through the whole thing!

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  • TonLee
    TonLee Member Posts: 2,626
    edited April 2013

    Omaz,

    Sorry I was just thinking out loud....lol

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  • TonLee
    TonLee Member Posts: 2,626
    edited April 2013

    I try to learn something new every day.  Sometimes these lessons come when I seek out information about a topic.  Sometimes they come from circumstance.

    Today I learned:

    1.  If you drop your water bottle while on an elliptical at the gym.  Wait until you come to a full stop before  reaching down for it.  Else you might get knocked in the head with one of the arm levers and fall off the machine and into someone running on a treadmill beside you.

    2.  NEVER walk backward at the gym with a heavy weight in your hand.  Lest you trip over some beef cake doing pushups and drop said heavy weight right onto his finger and your as* on his back.  (luckily it wasn't the tread mill guy)

    3.  If you wear earbuds at the gym partly for music but mostly so the guys won't chat you up, and one day forget the mp3 but NOT the earbuds.  Go ahead and put them in your ears and drop the bottom of the cord into your shorts.  This works.  However, please ensure the bottom of the cord is not sticking out the back of your shorts when a man tries to talk you up and you point to your ear buds and shake your head.  (Like, helloooo I'm listening to some MUSAC!)

    Yeah.  That was my day today.

    I'm awesome like that.

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