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January 2014 Surgery Sisters

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Comments

  • pinktiara
    pinktiara Member Posts: 716
    edited June 2014

    Nice to see you Joanne, ((((hugs))))) back at cha!

    Polly

    Of course I love the pic and the caption. The heck with my boobs I want a lifestyle lift and those fancy dental implants.

    Are you having problems taking the arimidex?  Just Curious, I have decided 99% at not taking anything...

    I think PT would help with my shoulder and neck pain. Rowing seems to feel really good but then I get the burning in my boobs and arms and fingers...I hope the MO will have some insight on that. Creepy thing about the location of my MO's office. It is where I would take Rob for his chemo and all the other stuff. Walking through those doors again is going to be very emotional. Happily my best friend, who went through the Rob cancer stuff and now my stuff, will be there with me. She is the "I'll kick your ass if you mess with Eve" type of friend. Very protective of me, and when I balk at asking questions, she is ON IT. Now that I think about this place, the nurses were fabulous, just the best, the docs also were very good. 3 more days...

    Beverly, how did your appointment go today? hope all is well.

    ttyl

    Eve

     

  • pinktiara
    pinktiara Member Posts: 716
    edited June 2014

    image


    Nate and Kiku at our first 5K.

  • pinktiara
    pinktiara Member Posts: 716
    edited June 2014

    Oh wow! who IS that handsome man behind the Foster Grants with the most beautiful puppy in the world?

    Wow, he has some rock'in shoulders uh huh uh huh!......not so sure about the white socks...lol...the Gator shirt and those socks are just part of the uniform. Notice the cargo shorts....you know how our partners always ask us to put stuff in our purses....oh so not me....Nate carries everything in those pockets..love it...just love him!

    just realized that is me right in front with my black and pink Nikes.  Small steps but big dreams..

    I am almost ashamed to say ...I am tired...really fatigued..i don't know what is going on...yes I have said this before....I don't have the luxury of having health insurance....so I feel as if I can't just run to the doc all the time. Although I would welcome a full diagnostics of my complaints.  Let's get it done once and for all.

    Have you all ever had a bone scan, pet scan, cat scan, colonoscopy (mary, yes) do you request all of this? has anyone been told when your first scan and what kind it will be since dx of bc.

    I see the MO on Friday ...I want to know what I should ask and what was your experience with that appointment. They tell me I don't need chemo...ok...but why did some of you get chemo when you didn't have lympnode involvement?

    ok ladies...I

    will let go and see what happens.

    Thanks for listening

    Eve

     

     

     

     

     

  • mema4
    mema4 Member Posts: 484
    edited June 2014

    momaton, love those pink and black shoes!  And who wouldn't like that cute guy in the cargo shorts? Yeppers

    I just left the the Armidex site where there is so much discussion about AI's and Tamoxifen. The ongoing discussion now is 5 yrs or 10 yrs. ruthbru is on there and she helps a lot. Anyway, I'm cheating. I heard earlier about taking 1/2 pill and so that's what I'm doing. My MO would throw a fit but at this point, does it matter?  He says there is no data on that dosage. My response was to get some damn data! If something is poisonous, perhaps the dosage is wrong? I stay so confused anyway. Is it a QOL thing for me? Absolutely! I see on these threads where women at low stages taking chemo and/or rads, lots of treatments and/or drugs and stages still change. True I don't see the whole picture from a short bio but crap. I think I'll keep doing my thing and later will decide how I want to keep going. There are no guarantees with or without.

  • girlstrong
    girlstrong Member Posts: 299
    edited June 2014

    hi eve..LOVE the pic. Your hubby looks like a great find:) Thank you for sharing. As for your MO appointment on Friday ..ask questions. From my understanding, chemo is given to those who are node positive and/or high grade tumors. The higher the grade the more fast growing/aggressive a tumor can be. In my case, I was given chemo because of my grade 3tumor (fast growing) and also because I had 1lymph node involved. Plus I was HER2+ which usually supports chemo unless it is under 5mm. By looking at your stats, your tumor was grade 1(slow growing ), no nodes, small, and hormone based. This tends to be the type of tumor that responds to hormone therapy and because you were stage 1; there is a high rate of it never coming back!!!! According to NCCN guidelines, scans are not typically recommended for early stage BC (ie stage 1 or2) unless the patient presents with clinical symptoms or supportive blood work etc. I know that I have never had a scan except for a breast MRI and chest X-ray when first diagnosed; I'm planning to keep it that way too. I would recommend joining www.nccn.org

    These are national guidelines fir the diagnoses, treatment, and follow up for many cancer types. Register as a physician and you'll have access to everything. It's a juicy read! 

    Hugs, Marissa 

  • Dtkd
    Dtkd Member Posts: 422
    edited June 2014

    Eve - I had a PET Scan because I had high liver enzymes (probably just caused by the pain pills after BMX) and a weird liver history, but Marissa is right, they don't normally order one.  My MO did and does order routinely order bone density tests, because they don't want to put anyone on AI's that already has osteoporosis. I personally will not be taking ANY AI's, since the first 2 made my joints ache (and they STILL do even several months after stopping them).  I will be asking about homeopathic alternatives when I see my MO in August. 

    Love the pic of Nate and your pretty feet!

    Diane.


     

  • pinktiara
    pinktiara Member Posts: 716
    edited June 2014

    Thanks so much Marissa for the info, I'll definitely look at the link.

    My tumors were grade 2 stage 1, because all of them were under 1cm except for the largest, it was at 1cm. My confusion comes with the grade. I was 1 point away from grade 3. So a bit  un-concerting. And that point proves true because one month there was nothing...examination by pcp, nothing. and then lumps everywhere. It is just so difficult to make the call.

    I am on the side of getting the scans...and save the big guns if I ever need them. And what clinical symptoms/ bone pain? head aches? something with your liver? I mean...that is a question I am going to ask...what to look for? I just want this MO to talk to me about all this stuff...fingers crossed that she will like that I have questions and that she will answer them.

    My goal is to let it go and keep an eye on everything, but LIVE now.

    love the  "peace out"  Hubby has always said that...

    rock on

    Eve

     


     

  • pinktiara
    pinktiara Member Posts: 716
    edited June 2014

    Hi Diane,

     I also will be asking about homeopathic alternatives to AI's. I already have done a ton of research and have purchased all of the supplements. however, with not feeling up to par, I quit taking everything, so I could approach the MO with a clean slate. So we can compare notes.

    Thanks, but I wear a size 11 so I never thought my feet wear pretty, just big...lol   A good foundation. So many jokes fobbed at me by my big brother over the years about my big feet....like I don't need skis....what a brat. A loveable brat...but a butt head none the less...

    LINDA...I watch HGTV...addicted to it. Last night on Love It Or List It......they had( like) 3 shows located in Vancover and Vancover island....wow...so very pretty.

    love you guys

    edited to highlight the" like" in parentheses....that is my California Valley girl coming out....lol

    Eve

  • lighthouselady
    lighthouselady Member Posts: 248
    edited June 2014

    Eve, I had all of the scans after diagnosis:  diagnostic mammogram, breast MRI, chest & abdominal CT scan, bone scan, brain MRI and PET scan.  None of my doctors have mentioned my future in regards to scans.... maybe the docs in Dallas Thursday will tell me.  My MO hasn't said a word, but I'm not surprised since I'm not too impressed with him anyway.  I see him again the last week of June, so hopefully with all of those appointments I'll find out something.

  • pinktiara
    pinktiara Member Posts: 716
    edited June 2014

    Marissa,

    have been reading on the link you posted....really great, answered some questions that I have been wondering about and have given me some compelling questions for the MO.

    Thank you

    Michelle, I have had US, diag mammo, and MRI...did you have the brain and pet  and bone after definite dx?

    Eve

  • lighthouselady
    lighthouselady Member Posts: 248
    edited June 2014

    Yes... My breast surgeon ordered the CT scan, bone scan and brain MRI and then my MO ordered the PET.  All after diagnosis.

  • pinktiara
    pinktiara Member Posts: 716
    edited June 2014


    thanks Michelle

    hope all is well in your world.

    Eve

  • bc101
    bc101 Member Posts: 923
    edited June 2014

    Eve,

    I wasn't given chemo because of being hormone positive and the decision was also based on my low Oncotype score. My first BS said my cancer would not respond to chemo. 

    I did not have any scans after diagnosis although I did have another MRI because I changed providers and they wanted to know how much cancer was left after my 2 lumpectomies didn't work. My clinic follows ASCO guidelines which say NO scans or blood work unless you have symptoms. I was shocked when I found out! But they say according to research most women find their own recurrent cancers in between doctor appointments. That puts it all on us :(

    When I finished treatment I was referred to the survivorship clinic where they gave me a Cancer Survivorship Plan of Care - basically a summary of my diagnosis, treatment, doctors, potential late effects of treatment, follow up care, wellness recommendations, etc. to give to my PCP or whoever else is treating me. It has a list of symptoms to watch for. I've found this very helpful. But still, you wonder with every ache and pain...is it cancer? I recently had a scare when I found a large raised, swollen area in the middle of my chest just above my TEs. It was HUGE! I had an exam last Friday and the graduating fellow who saw me left the room and brought back an older doc. I thought, oh boy .... here we go. The older doc thought it was very interesting - he's like, hmmm, yes, you definitely have a bump there. He thought there might be fluid in it, so I had an ultrasound yesterday and thank goodness it only turned out to be fatty tissue. I'm like ... seriously? It's just FAT? WHEW! I felt like slamming back a few very large glasses of Merlot! (god, I miss drinking wine, lol!). So, I passed my (almost) 6 month follow up. I feel like I just jumped the first hurdle. Yay!

    I suppose with time that fear will go away, and hopefully none of us will ever have to put mets in our signature.

    Good luck with your appointment! 

  • girlstrong
    girlstrong Member Posts: 299
    edited June 2014

    Eve, be sure to ask about Oncotype testing. The results will give you info on likelihood of recurrence and need for chemo. Glad your seeing an MO soon. 

  • girlstrong
    girlstrong Member Posts: 299
    edited June 2014

    oh good news girls, saw my RO today for follow up. She thinks I'm doing great and doesn't need to see me for 6 months. She said ."your NED" (no evidence of disease) . Music to my ears. Off to see my PS on Thursday; excited Winking!! 

  • bc101
    bc101 Member Posts: 923
    edited June 2014

    Congratulations!!! SmileThumbsUp

  • pinktiara
    pinktiara Member Posts: 716
    edited June 2014

    thanks all for the great answers to my questions about the questions I need to ask to get answers....lol

    my onco was 11 so no chemo...

    love you ladies

    Eve

  • mema4
    mema4 Member Posts: 484
    edited June 2014

    Girlstrong, yay for good news! 

    No chemo or rads for me either based on Oncotopye :)

  • Dtkd
    Dtkd Member Posts: 422
    edited June 2014

    Fantastic news Marissa!!  Let us know how it goes with the PS. 

    Mary - that must of scared the crap out of you.  So glad all is okay.

    Eve - you know I'm with you.  Of course we'll need a full report after Friday. :)

    Had a super-fantastic class tonight.  Maybe it is the 10 lbs. I've taken off, but I felt like I was kicking so much better than I was even a few days ago.  Taking tomorrow night off to go see my TKD Master's band play at the Boom Boom Room in San Franscisco.  BARTing (our transit system) to SF with one of my TKD GF's for light dinner (at least for me), and yes, probably 1 or 2 drinks, but will be back on the wagon Thursday.

    Hope you are all snug as bugs and have a great night's sleep!

    Diane.

  • mmtagirl
    mmtagirl Member Posts: 325
    edited December 2017

    hi friends, was on the dark side last night after my last AC infusion yesterday.  On to taxol July 1

    Eve, I thnk you have all the questions you need, especially with your oncotype score of 11.  I have the same type of cancer as you ,but, grade 1 and 1positive lymph node.  My oncotype was 16.  The only reason I Amin chemo is because I joined the clinical trial to determine if no chemo and tam or ai is more beneficial than chemo. And ended in the chemo arm.  Since it is the standard of care and I have such strong family history my mo would not put me on tamoxifen only.  I also go to see the charts showing where for low oncotype, no node that chemo for those women was of less benefit than 5-10 years on hormone suppressing therapy.  Ask you Mo to see the chart for your specific oncotype analysis.  The doc should have it and it's a good visual for asking questions and hopefully puts your mind at ease.

    I had a colonoscopy at age 50 and since it was relatively recent I didn't need another one.  After everything we have been through they really are nbd.  No eating and drinking the nasty koolaid in dance is the worst part...and just knowing what they are doing.  Good drugs, no pain, no problem.  Ct scan on my abdomen only after I was hospitalized on Easter because of the chemo.  

    For me, if I did nothing I had a 25% chance of recurrence even with the BMX.  Tamoxifen lowered my chance by 13% and chemo another 6%.

    Congrats, Marissa on being NED!

    Mary, come see my MO.  He said it was ok to drink wine and I am on chemo! I feel less guilty about the occasional glass or two when I am feeling good.  Personal choice, seems the docs can't even agree on wine!

    Diane, sounds like you are beginning to kick some serious a$$ in class again and getting stronger.  You go girl!   You have been my inspiration to kick the exercise routine up a notch.  Step aerobic class on Monday and I did the whole thing for the first time since starting chemo and I loved the big sweat!  My Muay Thai class was yesterday so I didn't make it.  Will try to join them tomorrow and walk while they run, but try to do the conditioning.  I can do modified push ups again which I will continue.  That is, if I am not napping tomorrow night!

    Cheers to all!

  • Dtkd
    Dtkd Member Posts: 422
    edited June 2014

    Ann - I don't think there is anything more bad a$$ than continuing to exercise while you are going through chemo. You inspire me on a whole new level. You are the very definition of indomitable spirit. Kudos on your modified pushups. Got my turtle shell breast plate protection bra and will try sparring with the class next time we spar to see how I do. Not sure I am up to it stamina wise, but it's part of it so will try.

    Happy Wednesday! Day on the green picnic with my son this afternoon at school and 5th grade promotion tomorrow. He'll be whisked away to my Mom's and I will only see him Saturday then he'll be with his dad for fathers day, and with his sister and my mom next week, so it will be just me and my shadow Sammy (the car). Bath remodel starts Monday...yay!

    Love and hugs, ( snort....autocorrect made that love bad hugs Lol)

    Diane

  • mema4
    mema4 Member Posts: 484
    edited June 2014

    Experience...

    “You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'”

    ― Eleanor Roosevelt                  

  • bc101
    bc101 Member Posts: 923
    edited June 2014

    You are ALL an inspiration to me. I log on to this thread everyday and admire how well you are all surviving and thriving despite all the bumps in the road. Love reading all your posts about what's going on in your lives. You girls are awesome and I'm so glad to be a part of this thread!

    I've spent the last several days at mom's house. We finally showed her her new "apartment" at the memory care facility and she seemed to really like it. But as my brother said, she can do an about-face really quick, too, so we'll see. We'll be moving her in at the end of next week. 

    I'm so glad to get back to my "normal" life at home. I missed my DH and my kitties! 

    I'm continuing my practice of mindfulness and being grateful for small pleasures - trying not to let all the other distractions that have been going on with my body consume me.

    This week, I'm grateful ...

    • that my ultrasound showed no cancer
    • that there's nothing wrong with me except for a frozen shoulder 
    • for the absolutely perfect sunshiny day yesterday
    • I didn't run into any rush hour traffic during my commute home
    • for the gorgeous iris blooming in my garden
    • for anything that is blooming right now
    • for the new refrigerator we're getting at the cabin
    • for DH's kiss on my cheek when he thought I was asleep

    Ok...I'm going to go dig in the garden and spent some time in my awesome bubble.

    Luv you guys,

    Mary

  • levassel
    levassel Member Posts: 254
    edited June 2014

    not sure if you'll be able to get this.  I did an interview on the radio for Relay for Life.

    http://m.kissnorthbay.com/2014/06/11/one-survivors...

    I had a hard time not bawling....but other than a quivery voice I think it was ok

    Laurie

  • mema4
    mema4 Member Posts: 484
    edited June 2014

    It was great! Your voice is beautiful and the emotion was perfect. You spoke for us all and I thank you so much!

  • bc101
    bc101 Member Posts: 923
    edited June 2014

    Awesome Laurie!! GREAT JOB!!!ThumbsUp

  • pinktiara
    pinktiara Member Posts: 716
    edited June 2014

    Wow, Laurie,

    still crying, So proud of you. thank you for representing all of us, I know it was not easy for you....BUT YOU DID IT!

    Love you chickee!

  • mmtagirl
    mmtagirl Member Posts: 325
    edited December 2017

    Laurie, so proud of you! Awesome job!

  • levassel
    levassel Member Posts: 254
    edited June 2014

    Thank you everybody.  I just wanted to share it with my January sistas!  :)

    Laurie

  • girlstrong
    girlstrong Member Posts: 299
    edited June 2014

    just listened to the broadcast....wonderful job Laurie. I know it was hard but you were brave and strong. Way to represent!!! 

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