Class of 2010

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  • KatieMom
    KatieMom Member Posts: 127
    edited February 2010

    NIce to hear from all of you.  So I heard from the med onc (Dr.Next) 's office today who told me they could see me tomorrow morning.  I said I would come if there were nothing else available, but as I had already been absent 14 days from my second graders this year, I really wanted to try to get appts after 3.  The secretary was nice and said she would call me back.  Of course, no phone call, so now I am totally kicking myself for not taking the first available appt. CRUD.... 

    In the meantime.  I need your help to handle the following situation:  A good friend (who has lived through my bc adventure so far) just had 2 biopsies - one on each boob.  They found DCIS in the first.  Two days later she had the second and they told her that she had "stage 2 cancer."  She was a bit of a basket case, but she is not me.  I had the whole thing researched by the time they had my results.  She is in D-Nile in a big way.  I asked her if it was stage 2 or grade 2 and she didn't know the difference and didn't know what the doc had said.  I asked what KIND of bc and she got kind a pissy with me and said CANCER, what other kind is there?  I gave her a book, some flowers and this website, but I don't know what else to do.  Really I do know, I have to let her figure it out, and she will come to her own realizations.  I just feel so bad for her.  I want to comfort her, but she is nowhere near ready for that as she is on the island of D-Nile.  Any help?  I will make food and help with kids, the usual stuff, but should I help her understand what this entails?

    Katie 

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  • LINDAGARSIDE
    LINDAGARSIDE Member Posts: 345
    edited February 2010

    Hi Katie...I hope you get the next appt with Dr Next.  Sorry, I just couldn't help but say that Laughing

    I am guessing that your friend is in shock...and can't get by the word cancer.  When she comes off of the ceiling she may want to talk.  Probably nothing you can do right now but wait and do the things like cooking/kids etc.  (ha ha...I just re-read that sentence and it looks like you are going to cook her kids).

    The cancer world is quite unique isn't it?  Remember how freaked out we were initially and now we're reaching out to others who are freaked out. 

    This is such a crazy way to live.  Somehow we got on the plane...and even though our ticket said Mexico...when we got off the plane we're somehow in f**ing Iceland.  What the heck?  My ticket says Mexico...hey...where did that plane go?  Come back here...my ticket says Mexico!  Don't leave me here...it's cold and I don't know how to speak this crazy langage.  LOL.  I guess I'm going to have to figure out how to speak Icelandic after all.  (But I'm going to sue that air line)

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  • Ezscriiibe
    Ezscriiibe Member Posts: 598
    edited February 2010

    Jeannie, I had my first chemo infusion last Thursday. It seems to be going well, knock on wood, and I'm only experiencing some mild fatigue, some mild body aches, mild nausea, and mild "fuzzy" tongue.

    Although today I wound up with a flipping Urinary Tract Infection! GRRRRRR!!! That's what's got me up at 4:00 am typing on a forum! 

    I go in Friday for a CBC and if it's low, will probably get a shot of Neulasta. Otherwise, my next infusion will be on March 11. 

    Linda, my onc has already restaged me at Stage IV, but I'm refusing to put it in my diagnosis here until we actually get the MRI and biopsy done. I know why he's doing it for HIS purposes, but I'm convinced that it will all come back as a false alarm.

    Maybe I'm just being delusional, but since we're already doing what we would be doing anyway, that's the way I'm going to approach it!

    Oh, anothe friend of mine has suggested I get copies of all my scans and reports sent to Sloan Kettering. She said that they will review them for free. 

    I haven't checked or researched yet to see if that is true, or even how I start that process, but I'm going to look into it.

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  • KatieMom
    KatieMom Member Posts: 127
    edited February 2010

    Linda - you are so funny.  I don't think I will be cooking her kids.  They are boys 10 and 13 and my six year old girl is having a hard time deciding which one she wants to marry.  She wrote her first honest to goodness love note to one a couple of days ago.  Sheesh.  I will wait for mom to need info and be there for her.  I will bug Dr. Next for an appt. today.  I need a secretary to keep all this stuff straight for me!  Hmmm a secretary....  I would like a housekeeper too, and as long as I'm asking an accountant, and cook, yea, that's what I want... :0

    MIchele - glad to hear you are okay.  I am following you closely. 

    Katie

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  • LINDAGARSIDE
    LINDAGARSIDE Member Posts: 345
    edited February 2010

    Hi Michele. Totally understand that you are not accepting your onc's idea of re-staging you until he can produce some hard evidence to back up his theory.  Here's hoping he's just plain wrong.  I guess this allows him to be aggressive with his treatment plan...and to my way of thinking...that isn't a bad thing.  We should be throwing everything we can at this sucker, right?

    I am still not certain about what to do about my onc test.  Should I take it or not?  If it comes back low, I am already doing what I'm supposed to be doing.  If it comes back in the medium range (apparently 70% of the cases do come back in this range) there is only a slight chance that taking chemo would make any difference.  If it comes back in the high range (very unlikely) then chemo might make a slight difference.  I'm all for taking chemo if I have a high onc reading...but don't want to spend the money if I don't need to.  I thought it was $3,000 but now the cost is $4,000.  I think I'll post a question about this and see if any other pink sisters out there had low grade/stage/ EST+ ER + and HER - and got an ONC reading that was high.

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  • Ezscriiibe
    Ezscriiibe Member Posts: 598
    edited February 2010

    I dunno, Linda, it's a quandry you're in for sure.

    I do know that if I had not taken chemo, then I would not have had the scans I had prior to taking it. The scans were ordered by the medical oncologist as a standard procedure prior to chemo.

    They would not have found the swollen lymph nodes nor the 2 liver lesions. There was no reason to suspect that anything like that could have happened. My margins were clear, we "caught" the tumor early, it was fairly small, and there was no node involvement.

    We did not do the ONC test to decide, but had the diagnostic that he did use come back with a lower "benefit," I would still have done it. Any chance, even a teeny tiny one, of a cancer cell floating around in my blood stream is worth the chemo.

    It only takes one microscopic cell to do its damage.

    That cell doesn't know or care that an ONC score is low. For me, the fact that the cancer was IDC was enough. 

    But that's for me.  We each have to make our decisions based on what we can live with within ourselves. That's what sucks. I've not always made the best decisions for myself over my lifetime! LOL!

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  • LINDAGARSIDE
    LINDAGARSIDE Member Posts: 345
    edited February 2010

    Hi Michele...thanks so much.  I've actually made a decision to go ahead and have it done and have put a call through to the oncologist.  You helped me to decide...thank you so much.  Take care, pink peep.

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  • KatieMom
    KatieMom Member Posts: 127
    edited February 2010

    Thanks for all the info you ladies share all the time.  I feel more educated on this hideous disease every time ai open this forum.  

    Linda - where did you find that 70% stat?  Of onc tests coming back in the intermediate range?  That makes me a little nervous.  

    I talked to Dr. Next's office again, they are reviewing the pathology report and will schedule me for next week.  They will call me..... yea right.  I'll be calling them tomorrow don't you know. :) 

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  • LINDAGARSIDE
    LINDAGARSIDE Member Posts: 345
    edited February 2010

    Hi Katie.  I called the "breast health nurses" who are two nurses who specialize in breast health here in Victoria.  They work out of the hospital and help people understand their pathology reports, prepare for surgery etc etc.  This service is quite useful and available to all breast cancer patients.  They advised me that 70% of test results from the ONC test fall into the medium or intermediate range, i.e. not high and not low.  My oncologist agrees with this information.  I don't know if this statistic is pulled from data only from Canada or is from all over the world.  Does it differ from what is in the USA?  In Canada we don't routinely do the test so maybe our data base is smaller to choose from if you get what I mean.  But, as I said, I don't know if Canada uses only our own information and if it does...perhaps the assumption is skewed.  Probably the internet should tell us?  Let's see who can find the answer first...LOL

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  • Pattyfish
    Pattyfish Member Posts: 27
    edited February 2010

    Hi Irish47 and the rest of the Pink Peeps,

    Your experience sounds much like mine.  Surgeon refered me to the rad doc and after I finished with the rads, I was sent to the med onc.  The med onc is the one who told me I didn't need chemo--just hormone therapy.  So far so good.  I just refuse to let every little ache and pain drive me into panic.  I don't see my med onc for another 3 mos and I am OK with that.  I believe that right now I am cancer free--nodes clear and margins clear--and what I am doing is to prevent bc from coming back.  There is just no guarenteeI won't be back in the same place 5 years from now--and I am OK with that, too  I am glad you went out and celebrated Cora.  I am toasting you in my mind..

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  • etk02038
    etk02038 Member Posts: 150
    edited February 2010

    I just found this link..it is under a link for health care professionals. I guess they think we're too stupid to understand it. Looks like more than 50% will come back in the low range.

    http://www.oncotypedx.com/HealthcareProfessional/ClinicalSummary.aspx

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  • Ezscriiibe
    Ezscriiibe Member Posts: 598
    edited February 2010

    Well, Ellen, count me a stupid. My brain hurts after trying to read that page! LOL!!

    Not a numbers person! Embarassed

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  • irish47
    irish47 Member Posts: 109
    edited February 2010

    Hey all you guys, hope all well.

    Michelle, am hoping your staging stays at 11a, please let us know how the MRI and biopsy goes. thinking about you..

    Pattyfish, thanks for your good wishes.  I see you are are from Florida (and excuse me sisters for digressing), but the news broke here about the whale killing the assistant at Seaworld.. My kids talking about it as we saw that show back in 2008. Sorry to bring it up but there is life outside BC..  Isnt it great to think about other things?  I am off to my brother in laws 40th birthday party tomorrow night, and after 5 weeks of internet, books and hospital appointments all around our pink problem I may just have FOUR glasses of wine.  Well I am Irish so have an excuse!

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  • Pattyfish
    Pattyfish Member Posts: 27
    edited February 2010

    Irish47, I am from FL actually only about an hour from Sea World and Disney.  It is very sad especially since the trainer was so experienced.  The whales are wild animals and to that extent, unpredictable.  I believe this whale has killed before; however, often the whales mistake fun play for deadly play.

    There is life after BC and we all need to remember this.

    Pat

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  • elle40
    elle40 Member Posts: 13
    edited February 2010

    Even though my onc test came back in the low range (17) I have opted for chemo. I want to do what I can and not live with regrets. Advice I received from all was go with your gut and I did not want to ever wonder, "What if I had...". There were many uncertain or gray areas with my results but I still believe the difference is worth the risk of potential side effects. I would much rather do this now than 5 or 10 years from now...I understand I could face it all again anyway but am prepared to do it now. I will have 4 x TC and follow with rads. Best of luck to any of you facing a similar decision. The best advice I can offer is the same I was given, go with your gut and don't look back!

    Time to look for a cute wig.

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  • Teka
    Teka Member Posts: 10,052
    edited February 2012

    HI! elle40,

    You're so comfortable with your breast-cancer treatment choices.   Thank you for sharing.  

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  • etk02038
    etk02038 Member Posts: 150
    edited February 2010

    elle40..thanks for sharing. I hope I can be as certain of my decision once my oncotype comes back.

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  • etk02038
    etk02038 Member Posts: 150
    edited February 2010

    Sorry Michele...must be my old accounting background coming backSmile

    My take on the report is that of a Study of 668 stage 1 or II node negative patients
    51% scored less than 18
    22% scored in the 18-30
    27% scored greater than 31 on the oncotype test.

    The other charts of interest for me was the patients age,size of tumor and the
    high ER tumors. All according to this study these particulars
    aren't a clear indicator on how the persons score will come back. Which of course makes the test very important. Since one can never know what their score will be until the test is done.

    But in my little paranoid mind, I just gotta wonder if I can trust any company with this type of internal study when so much money is to be had. But, will I trust my score? Probably, but my Gut will make the final decision.

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  • Jac999
    Jac999 Member Posts: 3
    edited February 2010

    I am new to the class of 2010.  I have just had my first AC chemo.  Second is on 9th March. 2010. I am a fit healthy aussie lady.  Only time in hospital was having children and pins in broken wrist at age 44 whilst playing netball.  No history of cancer in my extended family.  Mainly heart disease. All of this such a shock.  Reading these posts.  I am uplifted which the positive and inspirational thoughts posted by you all.  This along with my family and friends and a great hospital team will make my journey much more bearable.  I will be having at this stage 4 AC then mastectomy with full lymph node removal followed up further chemo and rads.  Long journey but a worthwhile one for recovery. 

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  • Teka
    Teka Member Posts: 10,052
    edited February 2012

    Hi! Jac999,

    Welcome aboard!

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  • KatieMom
    KatieMom Member Posts: 127
    edited February 2010

    Welcome aboard Jac999.  I could almost hear your cute accent coming through :)  Sorry to have you in our ohso exclusive club that NO ONE wants to join, but we are glad to welcome you in.  

    The teachers at my school are putting together a Relay for Life team to support cancer research and they have decided to do it in honor of me.  Pretty nice, huh?   

    For those of you following my saga of Dr. Next, I should hear from them today regarding getting an appt next week.  She hadn't reviewed my pathology yet so couldn't see me until next week.  I tried to question why they thought they should give me appt yesterday if they didn't have the info needed...but, oh silly me, to try to be logical with doctor's scheduling :)  

    Happy Friday to all.

    Katie 

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  • retrievermom
    retrievermom Member Posts: 522
    edited February 2011

    I'm part of this group, too.  Was diagnosed before Christmas, had a lumpectomy Jan 6th.  Good margins, clear nodes.  Was really sore and swollen for awhile, took a week off work, but felt compared to my hysterectomy a year ago that this surgery was pretty easy for me.  The scars on my breast have heeled up nicely, and though the surgeon wasn't sure what the cosmetic results would be, I'm pleased.  No lymphedema.  Thought I would need "just" radiation, but the news from the onc was that with the invasive aspect being grade 3 and my being triple negative, chemo should be considered.  I've now completed two treatments.  This is certainly no picnic, but I want to do whatever's necessary and not feel "should'a would'a could'a" years down the road.  I lost a sister 12 years ago to a brain tumor, and I think of her constantly.  My heart's with all of you, as well.

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  • LINDAGARSIDE
    LINDAGARSIDE Member Posts: 345
    edited February 2010

    Hi Jac999 and Retrievermom...so glad to have more pink sisters.  Sounds like we are a real multicultural or should I say multiboobal bunch of characters.  What I love is that we are all going to get through this together and we are here for each other.

    I made an imporant decision (finally) about the ONC test for me late last night and am happy with my final decision.  While the results of the test would be interesting to know, if it suggested that chemo would be a viable option for me if would only increase my already high survival rate (about 97%) only slightly.  And the side effects of chemo for me are quite serious.  I forgot that I have severe tinnitus (high ring/tone in the inner ear) that NEVER leaves...and often makes me dizzy and I often fall as a result.  Chemo can affect bone density and with all the falls I have I will be looking at a broken hip and things seem to go down from there for some reason for women near 60.  LOL.    I would not have been able to make this important decision without all of the input from my pink peeps.  Most agreed with my oncologist...but ultimately, my gut made the final decision.  thanks again!  Wink

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  • jakhope
    jakhope Member Posts: 133
    edited February 2010

    Welcome jac999- sorry you have to join our group, but we are a great support team with lots of info and thanks to Linda especially, some great humor! What part of Australia do you live. I have a high school friend living there now.

    Welcome retrievemom too-

    You're a brave group doing the chemo. I was so relieved with an Onco score of 14, I took it and ran with the Dr saying it would not be worth the side effects for me. I will not look back and say I wish I had, I will deal with what life gives me and hope the decisions I make at this time in my life are right, you can never second guess. No what ifs!

    KatieMom- I'd say your friend has to come to grips with her horrendous news. We know, we have been there. Let her come to you when she is ready, just as we found each other as we reached out. I love your story of your girls choosing which boy. That is so cute! God I hope you meet with this Dr Next soon!!!!

    My Mom is not doing well at all. I  am feeling as I can get a call anytime. Hospice does keep her very sedated  and in between she is very agitated. It seems worse every day. Mom and I did share some wonderful loving letting go moments yesterday. I am sorry my siblings are not here to have the same.

    Linda- what happened to your joining the study? You made your decision to have the test? or not, because you do not want the side effects of chemo?

    Michele- I am praying for you with the best results and that your staging stays the same and at least now you are in the throws of licking this thing.

    Itchy rash for me and plugging along. I have six more full breast treatments left, and then nine boosts. They did the scan yesterday to plan where they zoom in for the boosts.

    Hugs to all you Peeps out there and have a good weekend. I am glad to have two days off of treatment.

    GP Jeannie here

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  • susiesue
    susiesue Member Posts: 68
    edited February 2010

    Feb. 19, I too was diagnosed with IDC, I'm in the middle of the various tests.....results so far.....size 1.1cm, grade 3, ER-/PR-, still waiting for HER2 results.....next week I have MRI scheduled and will sit down with my doctor to discuss results and treatment, I'm in the process of scheduling surgery.  I posted on the just diagnosed board and got lots of encouragement. I find it's scary not knowing how my lymph nodes will turn out.......

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  • Teka
    Teka Member Posts: 10,052
    edited February 2012

    Hi! susiesue,

    When were women told that breast-cancer treatment would be a confusing maze?    I must have missed that one.

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  • LINDAGARSIDE
    LINDAGARSIDE Member Posts: 345
    edited February 2010

    Hi bossum buddies...my boobilishus friends... the pink brigade.  Welcome new members...join our army.  We are all strong fighters and welcome new recruits with open arms. 

    The more I read about breast cancer the more I am convinced we can beat this thing...the research and progress made on breast cancer...amazing drugs and treatment strategies.. is quite incredible.  We are all fortunate to be living in a time when so much is available. 

    GP...I will be in the radiation study but still don't know which group they will assign me to...group "A" or group "B".  Nobody knows which group will do the twice a day thing...sure hope it's me!  It would be nice to get it over with quickly.  I have to admit...even though I've been doing the hurry up and wait thing since January...I still don't like it and find my patience wearing thin at times.  I don't like feeling guilty about it either.  LOL.  On one hand I'm so glad for all the progress...but on the other hand, I really hate to wait around for treatment.  I guess you can't have it both ways. LOL.

    The tamoxifen is working fine.  No side affects of any kind that I can notice.  My appetite isn't as ferocious as it usually is so that's a good thing.  A few night sweats...but nothing I'm not used to.  If I wake up for no reason, I put on the TV (we have one set up in the bedroom) as I refuse to lie there awake and think about dying or what ever else pops into my pea brain.  I put the timer on and am usually asleep before the timer goes off.  LOL. 

    Katie...it sounds like you have amazing support at work.  They can take your mind off of your buddy, Dr Next.  Let's hope your appointment with Dr Next is in this millenium.  We're all anxious to learn how it goes and want to be around to hear it.  LOL. 

    I shouldn't laugh too loud.  I still haven't even got my darn tatoos for radiation!  I go on March 8th....but on March 4th I go for the ultra sound to my mid section.  I honestly have a feeling something wierd is going on there.  Have thought so for about a year or so.  It will be interesting to see what, if anything, turns up.

    OK, fellow pink soldiers....have a good night.  Canada won (barely) the hockey game tonight and so we are going to play the USA on Sunday.  Go Canada Go.  Absolutely everyone is watching it and even all the bars down town have at least 3 or 4 screens going.  You can hear the game broad cast outside on the streets!  Wild times in Canada, let me tell you Tongue out.  We go crazy for hockey up here.

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  • Dublin4
    Dublin4 Member Posts: 158
    edited February 2010

    hello to all...I have not been back in a little while...just getting all the information I can and moving forward.  I meet with a group of docs this week and we went over everything and I mean everything.   I was told that i have very busy breasts and that choice of the bmx w/Reconstruction was a very good choice. I would be very difficult to monitor and thats not what I want...ok lets be real this whole thing is not what any of us want!  They do not think I have any other cancerous areas and the lymps look clean on the MRI but we wont know for sure until surgery.  They told me that although I am not feeling very lucky right now, that I am a very very lucky woman as it is very early and very small and with the cystic nature of my breast could have gone undetected for a long long time.   Clearly no radiation for me since I am having a bmx and chemo is up in the air although I am planning that I will.  They want to do the Oncotype test as I am a "perfect" candidate for it.  Had a good crying spell late yesterday afternoon after I got a call from the hospital that my surgery had been moved back a few hours.  I am going in Monday 3/1.  Apparently there have been alot breast cancer cases that came up this past week and I got moved.  I told my husband what good is it to schedule an appointment.  How about we all just show up and take a number..."now serving..."  OK I am over it now, but I have been very clam and I was ready...then they change my time....at least that did not tell me they moved it to next week!

    Any words of wisdom?  I think I am the only member of the class doing the bmx, but I don't want to take any chances...so here I go. 

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  • Ezscriiibe
    Ezscriiibe Member Posts: 598
    edited February 2010

    Dublin, I love your description: very busy breasts!

    Also, I still have not decided that I won't get the bmx. It is still very much on my list of things to do, but I won't be making the final decision until after the radiation, which won't be until after the chemo. ::sigh::

    At any rate, I can feel your frustration!

    Hugs to you and please keep us posted! We miss you!

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  • LINDAGARSIDE
    LINDAGARSIDE Member Posts: 345
    edited February 2010

    Dublin, aka the woman with "busy breasts".  That is quite descriptive and says a lot, for sure.  I've missed you and glad to know you are moving forward with a life saving plan.

    When I first met my surgeon, I said to her, "If you need to remove both of my breasts, it's fine with me.  Do what you need to do to save my life as I don't really need them anymore"  I was absolutely dead serious.  I have large breasts and have arthritis in my back (fractured spine) and the weight of my breasts creates more pain than necessary.

    This is a change in your life.  It sounds like you have great support around you and I hope you let ALL of us be a support for you.  (This reminds me of giving birth.  Everyone wants to be there but you're the only one who goes through the real crap.  Sh**t).

    Changing appointment times like that really sucks because you are right...you get a date in your mind and set up how everything will be...trying to at least take SOME small control of things and then BOOM...it's taken away and you have to start again.  The loss of any type of control really sucks too.  Again, Sh**t.

    On a brighter note (?) as a result of my recent adventure with breast cancer many of my co-workers went and had a mamogram.  One got a "call back" and may well be joining us.  Her mother died of cancer.  She has been putting off her mamogram for awhile.  If she is granted membership to this club, let's hope it was caught early.  Even better, let's hope they find NOTHING and she never joins us!

    I am thinking of you and all of us and am so proud of the extraordinary courage we all display in the midst of a bunch of real crap.  While this isn't a club I ever thought I'd belong to....it could be a lot worse.  ((((((((((((hugs))))))))))) your way....God bless you.

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