I am Stage 1 but the Grade 3 continues to make me nervous

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  • Meece
    Meece Member Posts: 19,483
    edited January 2010

    Yes it was nice.  We went to three wineries that we had never been to before.  We knew a pourer at one so he gave us some special tastes.  I got to go to my favorite cheese shop, the weather was really  nice.  Then we ended the day at our friends' winery. One day we'll be up to see your neck of the wineries.

    Your baby is precious with that little pucker.  

  • roso88
    roso88 Member Posts: 31
    edited January 2010

    hi seyla,

    i have an echocardiogram scheduled for next week but there has been no talk of getting a muga test.  will definitely inquire about that with my onc.

     i am learning so much from this forum.  thanks for the helpful suggestions!

    my surgeon doesn't think an MRI is necessary due to all the false positives.  out of curiousity, did anyone else get the same advice?

  • Meece
    Meece Member Posts: 19,483
    edited January 2010

    Nope, my onc thinks they are great for me.  At least once every two years.

  • sheila888
    sheila888 Member Posts: 25,634
    edited January 2010

    Meece ...I never got an MRI during my BC journey.

    Roso... They have to give you a Muga before you start Herceptin, and A/C.

    good Morning everyone!

  • Meece
    Meece Member Posts: 19,483
    edited January 2010

    If you do get an MRI, make sure they use contrast.  My idiot former dr. forgot to write that on my first orders.  The tech started my iv, not an easy task on me.  Sent me back to the waiting area.  Then came out and said she had to take it out becaus ethe orders didn't request it.  She had started it because it was standard procedure.  So, endured the whole thing, back then they took a looooooooong time.  When the results came back, they were inconclussive because no contrast was used.

  • mmm5
    mmm5 Member Posts: 1,470
    edited January 2010

    I would reccomend an MRI, my invasive component were not seen on the mammo or US it was only seen on MRI. THe mammo only picked up the DCIS. As far as ACTH it is really becoming an outdated way of chemo for early stage Her2 gals. Look at the 3rd analysis of the of the original Hera Trial that was presented at the ASCO meeting this year, I believe the risk of cardiac events or reduction in LVEF was a bit higher than 5 percent. I actually know 2 young women under 50 that had acth and both had cardiac damage irreversible both are on drugs for the rest of their lives presumably.

  • mmm5
    mmm5 Member Posts: 1,470
    edited January 2010

    Also I chose to have echos instead of Muga's every 3 months, they are equally as diagnostic as long as you have the same Cardio read the results each time. In addition a lot less radiation and not as invasive.

  • weety
    weety Member Posts: 1,163
    edited January 2010

    Roso, Yes, the echocardiograms are in place of the muga.  I don't know why some oncs prefer one over the other, though.

    I would definately ask about the TCH chemo route over the Adriamycin route.  Both adriamycin and herceptin can cause heart damage,so they cannot be given together.  You have to finish the Adriamycin before beginning the herceptin.  My onc told me when I was first starting chemo that even besides the reason about the heart, why would you want to wait another 12 weeks (while getting the adriamycin) before getting that herceptin in your body--she would rather get it in as soon as possible (with the TCH regimen you get herceptin concurrently.)  Also, if you had left breast cancer, the radiation can also be another added component that has risks of heart damage.  mmm5 is right, the adriamycin regimen is becoming more and more outdated.  Recent research all shows TCH is just as effective but with lower risks. UCLA (where herceptin was developed) recommends TCH as well.  Dr. Slamon (creator of herceptin)  is speaking at a breast cancer conference in February that I'm going to with my onc, and this is one of the subjects of his talk.

  • Nicole112
    Nicole112 Member Posts: 327
    edited January 2010

    Ladies you are a wealth of knowledge!

  • Meece
    Meece Member Posts: 19,483
    edited January 2010

    My Cancer center conveniently lost my baseline echo.  My cardiologist confirms that Adriamicin is tough on the heart, but will not commit to saying that is why I have heart problems. 

    Weety, do you go to UCLA for tx?

  • sweatyspice
    sweatyspice Member Posts: 922
    edited January 2010

    Roso88 -

    My first surgeon wanted to do an MRI.  Second opinion surgeon did not believe in them.  Tiebreaker third opinion (who had trained the first surgeon, as it turns out) also wanted to do an MRI. 

    Had the MRI.  Found a second area, and it wasn't a false positive.

  • weety
    weety Member Posts: 1,163
    edited January 2010

    Meece, No I do not get my treatments at UCLA, but I did go there for a second opinion just recently.  I am a Kaiser patient.  My oncologist at Kaiser was the doctor overseeing the UCLA doctor I went to see back when she was doing her fellowship, so that is why she recommended me to go see her at UCLA for my 2nd opinion.

  • Meece
    Meece Member Posts: 19,483
    edited January 2010
    Weety - Ahhhhh.  I am always curious who goes where.  My PS is not too far from you.  He's in Long Beach.
  • KarenVW
    KarenVW Member Posts: 92
    edited January 2010

    I also had an MRI following my initial diagnosis.  The MRI found 2 very small tumors (<1/2 cm each) next to my primary 1.5cm tumor.  Neither of these additional areas showed up on a mammogram.  When I had my lumpectomy my wire was inserted via MRI.  I am convinced the MRI enabled clear margins for me.  I will have both mammograms and MRIs as follow-up checks.  Yes, there are more false positives.  But that is fine with me, at least right now.

  • roso88
    roso88 Member Posts: 31
    edited January 2010

    Thank you so much for the helpful advice and information.  I will definitely present all of this (esp the TCH over Adriamycin route) with my onc.  Will keep you posted...

  • weety
    weety Member Posts: 1,163
    edited January 2010

    Meece, are you in the Long Beach area as well?  If so, we are neighbors!  I actually bounce back between the Kaiser in Bellflower/Downey and the Long Beach location because I'm pretty much in the middle of the two.  I followed my OB-GYN to Long Beach a few years ago, but most of my other stuff is done at Bellflower/Downey.

  • Meece
    Meece Member Posts: 19,483
    edited January 2010

    Weety, no, I am "up over the Grapevine".  I commute to my So CA drs. and I don't mind a bit, they are/I am worth it!

  • mmm5
    mmm5 Member Posts: 1,470
    edited January 2010

    Weety

    Met with my Onc today and He is generally regarded as tops in the field, number 1 in AZ etc etc.

    He states there is data that supports zoladex being equally as effective as Tamox for premenopausal and does state that an AI does not have to accompany that for premenopausal patients.

  • weety
    weety Member Posts: 1,163
    edited January 2010

    mmm5, thanks for the info.  So are you considering doing this without the AI's like you have been doing? 

  • Nicole112
    Nicole112 Member Posts: 327
    edited January 2010

    Can I ask the premenopausal ladies, are we all getting Lupron shots every three months?

  • Meece
    Meece Member Posts: 19,483
    edited January 2010
    Not me, but I am TN.  Undecided
  • lexislove
    lexislove Member Posts: 2,645
    edited January 2010

    Nicole,

    I have been on Lupron every 3 months since July 2008. I will probably be on it longer than 3 yrs since I will be taking Femara and not Tamox. Im still undecided about an ooph, waiting for some SOFT trial news..

  • lexislove
    lexislove Member Posts: 2,645
    edited January 2010

    weety,

    Here is an article about what mmm5 was saying .....my onc also reminded me of this since I am unable to take Tamox.

    http://www.sciencedaily.com/releases/2009/02/090224163600.htm

  • mmm5
    mmm5 Member Posts: 1,470
    edited January 2010

    Long meeting with Onc yesterday.
    He feels and I have had 2nd opinion on this from a Nationally respected ONC from MD ANDERSON, that premenopausal Her2 gals get equal benefit from Lupron or Zoladex as Tamox.

    If you go on Adjuvant online they are making similar statements. I have so many issues from the NO HORMONES that My onc asked me yesterday if I can stick with it one more year as he thinks as does the other, that after 3 years our risk \is much less significant. I am doing Zoladex with no AI and that is what they both suggest\

    I tried Arimidex and Femara and could NOT tolerate but Zoladex is not my best friend either.

    The problem is that most premenopausal women get tamox, and if you are HER2 many ONC's don't like it so if you are under 45 and were completely premenopausal and now you are given spontaneous menopause and an AI it can be very diffucult, HOWEVER there are women that do just fine, both my ONC's feel they are in the minority.

    Anyway whatever you decide it has to be right for you as an individual.

    Good Luck

  • Nicole112
    Nicole112 Member Posts: 327
    edited January 2010

    Lexilove- Went to my OB yesterday for my annual and I asked about the ooph, he says it is controversial at this stage... he said that I should be conscientious of my body and to come in if here is any abnormal bleeding, etc... and to be sure I get my annual PAP... does this sound consistent with what your drs have been telling you?

    Also, if you do not mind me asking, why are you on Femara and not Tamox? I thought the only difference was Tamox is for premenopausal woman and Femara is for post...

  • kerkle
    kerkle Member Posts: 147
    edited January 2010

    Nicole112; Not to butt in but I had similar questions as you. I am 38 and no where near menopause. I asked every oncologist (I saw 3 - the final one was a gynocolocigal oncologist), my radiotherapist and my breast surgeon about removing my ovaries. They all had different opinions (weak ones against removing and surgeon was all for it) and my "regular" gynecologist felt exactly as yours did. However, the final opinion was from the gyno-onc and she said that research is showing that it is very wise to remove my ovaries but ONLY if I am willing to go on a low dose of Estrogen. Odd since I am er+ and pr+, but she said that I am too young to go into menopause (other risks) and that a monitored low dose is safer than what my body is producing at the moment. I chose not to go on Tamoxifen. She also said that it is the combination of Prgesterone and estrogen together that increases chances of ovarian cancer and not the Estrogen alone. I am not Brca + either but she was discussing with me that there is a very high correlation between hereditary BC (my mom died from BC at 37, so we assume I have "a" gene not "the" gene) so I decided with this Dr to do a hysterectomy. At any momemt the patch can be removed.   

  • kerkle
    kerkle Member Posts: 147
    edited January 2010

    Gynecological Oncologist

    I mistyped it above!

  • Nicole112
    Nicole112 Member Posts: 327
    edited January 2010

    Kerkle,

    THANK YOU for jumping in here and any other woman on this topic as it is so confusing to me... I guess I never thought about all that goes in to the Tamoxifen, Lupron, etc... it was at my annual OB appt that he sat me down to talk about the side effects from these drugs... thinking Tamox and not Lupron on the increased risk of ovarian cancer...

    I erroneously thought that I am in menopause and this chapter was closed... but another wonderful woman on these boards informed me we are on Lupron for a number of years and not life.. which was news to me, and I confirmed this with with my onc! THANK you ladies once again for educating ME!

    So, Lupron will end in a few years and I could start ovulating again... so perhaps I need a second opinion on this ooph procedure which I heard is pretty intense? Any woman had this already who can share?

  • mmm5
    mmm5 Member Posts: 1,470
    edited January 2010

    Nicole

    You are on Lupron/Tamox now right??

    How is your back pain?? Mine is just horrible and Onc believes it has to do with the Zoladex and no Estrogen for the muscles.

    Hope all else is well.

    I had Onc visit on Tuesday and had to have TM's done which I hate its just like one more test you have to sit around and wait for. ICK!

  • sheila888
    sheila888 Member Posts: 25,634
    edited January 2010

    mmm5...I can relate to you about the TM test. you think after all this time would get easy right?

    It doesn't I go through crisis every 4 months waiting for the result. Which only takes 2 days.

    I have one coming on March 1st and i make sure the app is at the beginning of the week so no weekends fall between.

    Hugs to you

    Sheila

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