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CALLING ALL STAGE I SISTERS

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Comments

  • Jaimieh
    Jaimieh Member Posts: 925
    edited January 2010

    Cake~ If you are planning on going to Disney World I would wait to book a trip in October.  We went this past October and we were able to get the meal plan for free with our stay.  It was VERY nice not having to do anything except show up for our reservations :).  If you want to stay outside the park I know of a house in Emerald Island (it's a gated community) that has 4 br, 3 bath with a pool for a very reasonable rate.  I think this past year it was $99 per night.  The owner is very nice and I only meet him because I rented his house. 

  • labarbera2006
    labarbera2006 Member Posts: 22
    edited January 2010

    Well I went for my breast MRI this morning.  What an ordeal.  Couldn't find a vein for the IV.  They poked me 6 times, in between heating my arm.  They told me I needed to reschedule, I said no way.  She said we have to have the contrast, I said ok, use my foot.  That worked just fine and off to the races we went.  Oh I wouldn't recommend the foot unless you have a high pain tolerance, hurt like crazy.  So I see the breast specialist tomorrow.  Don't know if he'll have the results then, but will keep you posted.  Hugs to all.

    Labby

  • labarbera2006
    labarbera2006 Member Posts: 22
    edited January 2010

    Dear MississippiQueen,

     I was dx August 2006, same as you except my IDC was 2 cms and my DCIS was 12.5 cms.  I had a mast, recon w/expanders, chemo and implant.  I am now on Tamoxifen for 5 years.  I had no family history of breast cancer.  I was 54 when dx.  I have had 2 children.  I did the genetic testing and the results were a rare mutation, so who knows what caused the cancer.  Two years later my sis was dx with BC at age 52 , she too has a rare mutation.  Haven't really gotten any answers yet.  The chemo is doable and I am doing pretty good so far.  Hope you are able to make a decision, soon that's makes you happy.  No two people are alike I have found out, so listen to the onco. 

     Good luck.

    Labby

  • nanasewah
    nanasewah Member Posts: 2
    edited January 2010

    Hi,

    I was diagnosed DCIS grade 2 last year November 2009 but after cancer staging summary they said the AJCC is stage 0 and yet I've been put on tamox after a mammosite and rad.

    Does anyone have this same diagnosis? Are you on tamox? What do you great gals think my situation is?

    I would love to hear from you 'cos I'm so confused about all the hipe about the side effects of tamox.

    Stay blessed and strong!!!!!!!!!

  • Meece
    Meece Member Posts: 10,618
    edited January 2010

    Labby, I was in the hospital for recon surgery in November.  When I went in for my pre-op bllod draw, they couldn't find a vein.  I was the one who suggested warming my arm.  They keep those rooms so stinking cold!  They still couldn't do it.  THey had one nurse holding a flashlight  to try and locat a vein and the other was the needle pusher.  I asked if they could go to my foot and I was told that they had to get a doctor's order to do that!  Stupid, that's all I have to say is stupid.  I know my body and my veins, and they don't give up easily!

    Meece

  • Harley44
    Harley44 Member Posts: 2,126
    edited January 2010

    Labby

    I had a real tough time with the IV last time I got my breast MRI, too.  The tech who FINALLY got it in told me that I should have warned them that I was going to be a tough stick... but I DID tell them when I made the appt....   oh well...

    Harley

  • Meece
    Meece Member Posts: 10,618
    edited January 2010

    I was told to drink lots of water before they try to stick you.  Great suggestion before you have to go into a tube and lay motionless, huh?

  • Harley44
    Harley44 Member Posts: 2,126
    edited January 2010

    ...I didn't know about warming the arm...   I always drink water before I go for any of these sticks...  but they still have problems finding a vein...    Oh, and you are right...  just when I have to lay down on that table with my boobs sticking thru those holes, and they start...  don't ya just know that I have to go to the bathroom?   :D

  • sheila888
    sheila888 Member Posts: 9,611
    edited January 2010

    i had a port for chemo my oncologist said that my veins cant handle the chemo.

    It was the best thing I ever did. Plus I had to get 1 year of Herceptin for 52 weeks.

    When I was going to bone scan they couldn't find the veins after 3 times I almost fainted.

    I need a nurse for blood drawings none of them have any problems..old memories and I'm still here to write about it.

    Hugs

  • deborye
    deborye Member Posts: 2,441
    edited January 2010

    Labby I can see you right now saying "NO WAY!" to the rescheduling, I don't blame you.  I can imagine the pain in the foot, I had the needle in the top of my hand, HOLY CRAP hurt like HELL and I have a very high pain tolerance.

    Welcome mississippi, I had a clear mammo the year B 4 I was dx.  Then a call back then all sorts of compression mammos, biopsy by ultrasound, the next night 6:00pm I get the call.  I had mammos since I was 41.  I am on Arimidex so far so good, bones are OK.  I take Calcium and Vit D.

  • sheila888
    sheila888 Member Posts: 9,611
    edited January 2010

    Hi mississippi...I did chemo, radiation and recently on Femara.

    Except HER2 status (which is a big difference in treatment) your DX is similar to mine.

    I had a Lumpectomy. Was also 53 at the time.

    Good Luck

    Sheila

  • deborye
    deborye Member Posts: 2,441
    edited January 2010

    I forgot to mention I was 54 when I was dx.  Lumpectomy 2X to get clearer margins because of DCIS, which they did not see.  IDC 6mm DCIS 7mm. Rads now on Arimidex, no chemo.

  • Everett78
    Everett78 Member Posts: 45
    edited January 2010

    Ok, I had a meeting with my surgeron today to go over the path report.  I had a bilateral Mast. with TE 3 1/2 weeks ago.

     I had two separate lumps (different & not related)

     .7 mm, idc stage 1, grade II

    1.4 cm, Mucinous, Stage 1, grade II

    All margins were clear and everything looked "great"

    I'm node negative (3 nodes removed, 1 did show isolated tumor celss, but NOT mets and so little i'm still node negative)

     I'm er+/pr+ and Her2 neg

     He says everything is good news, I will need tamoxifin or amidex, but I'm in the gray area for chemo.  If it were his wife he'd do chemo and have the lowest risk possible.

     I'm seeing an oncologist Wednesday. 

     Is there a typical chemo type/length for stage one idc?

     Anyone in a similar situation?

  • AL1841
    AL1841 Member Posts: 17
    edited January 2010

    everett78:  i am in same situation.  I am 42 yrs. old, oncotype 13, no nodes, ER/PR positive, Her2neg, 2 tumors (largest .7mm), had a double mastectomy on 11/24 and started CMF chemo today.  8 treatments, every 3 weeks for 6 months.  To be followed by Tamoxifen for 5 yrs.  My oncologist recommended this.  All other oncologists I met with suggested ovarian suppression injections (monthly for 2 yrs) partnered with Tamoxifen.

  • deborye
    deborye Member Posts: 2,441
    edited January 2010
    That scares me, I had IDC 6mm and DCIS 7mm just had lump and rads now on Arimidex.  All three doctors agreed to no chemo.  I wonder if I should of insisted?  My prognosis is 12% chance or it coming back, I want 0%.Frown
  • AL1841
    AL1841 Member Posts: 17
    edited January 2010

    Many oncologists will use oncotype as a guide. Mine was low but my oncologist would rather look at the total picture.  Since i have multiple sclerosis, She advised me to do Chemo rather than Ovarian suppression injections.  Everett and deborye:  what were your oncotype scores?

  • Everett78
    Everett78 Member Posts: 45
    edited January 2010

    I haven't had the oncotype test, so I don't know.  When I see the onco Wednesday he may want to get it.

     I'm 49 and pre-monopause and i'm having those stupid frequent periods..so I'm in that almost menopause stage.  I wonder if that makes a difference.

    Deb

  • C130sunshine
    C130sunshine Member Posts: 47
    edited January 2010

    Unfortunately chemo is different for everyone.  One thing I have learn is that cancer and its treatment is all a numbers game.  My statics class has come back to haunt me.

    Deb....what helped me make the important decisions is my "treatment book".  I took it with me to all my appointments.  I used this book to take notes, but I also had all my questions written out before I went to the appointment. Make sure you ask your oncologist about your periods.

    AL1841 is correct you need to look at the entire picture not just one aspect. 

    Let us know how your appointment goes.

  • deborye
    deborye Member Posts: 2,441
    edited January 2010

    They never did an onco type score, I was post meno 1 yr B 4 I was dx so no periods for me going on 4 years.  I am 58 now.

    Debbie

  • Hannahbearsmom
    Hannahbearsmom Member Posts: 266
    edited January 2010

    My oncotype score was 16. I did not do chemo. I was told that without chemo my recurrence rate is 10% and with chemo it would drop to 7-8%. I decided that was not enough of a change to go through chemo. I do sometimes think about it but I do feel that it was the right decision for me. 

    TCK

  • Hannahbearsmom
    Hannahbearsmom Member Posts: 266
    edited January 2010

    I also was premenopausal. I did not have ovarian suppression. It was recommended to me to have my ovaries out. I opted to have robot assisted laparoscopic BSO and hysterectomy. I am on tamoxifen. So far ,so good.

    TCK

  • Catlover123
    Catlover123 Member Posts: 13
    edited January 2010

    had surgury december 31......they did a sentinal biopsy and it came back negitive, but the lunectomy was not, the tissue surrounding the cancer came back with abnormal cells.........got to go back for surgery again, this time i am going to do a masecotmy so i won't have to back again in case they do not get it all...i say why take a chance.....

  • Harley44
    Harley44 Member Posts: 2,126
    edited January 2010

    Catlover,

    Welcome!  I am also a catlover, and I used to live in Maryland, too!!   My cats gave me great comfort while I was getting through my treatment... I have two, a tuxedo named Spike and a Norwegian Forest mix named Thor.

    I had a bilateral mastectomy, with reconstruction...  after a short course of chemo...

    When are you having your surgery?  Good luck to you!  Please keep us updated!

    Harley

  • Catlover123
    Catlover123 Member Posts: 13
    edited January 2010

    excuse me but what are all these abbriviations mean????

  • Catlover123
    Catlover123 Member Posts: 13
    edited January 2010

    I am going to have surgery again next thursday. My daughters cats are name Raven and Shadow....they are both heinz 57 brand......but awesome, they make me laugh and i have so many pictures of them.....thank you for your support.....I am not going to get reconstructsion of my breast......

  • Catlover123
    Catlover123 Member Posts: 13
    edited January 2010

    Harley, I am having surgery at Walter Reedmy daughter is in the military and I am her dependent.

    that is an awesome hospital

  • sheila888
    sheila888 Member Posts: 9,611
    edited January 2010

    Hi Catlover... There is a thread called Abbreviations for Newbies-Updated.

    If you go on active topics you see it I just bumped it for you.

    Good luck with your surgery, come back and update us.

    Sheila

  • elimar
    elimar Member Posts: 5,890
    edited January 2010
    Everett78,  My Dx is below and my single tumor was 7mm also.  I imagine they are suggesting chemo to you now because you had two separate masses.  Were both of them hormone receptor positive, or just the IDC?  If your doctor does not bring up getting the Oncotype Dx, go ahead and ask for it on BOTH of your tumors.  If both of them have low Onco scores, and if chemo will only better your recurrence stats by 2-3%, it may make a difference in what you decide.
  • Nicole112
    Nicole112 Member Posts: 130
    edited January 2010

    Hi Catlover,

    Sorry to hear it did not clear the margins, I had a similar experience, I went back and told them to take my breasts, but they would not! They said the probability of a recurrence with a reexcision was the same as mastectomy. So, they did the reexcision, which I heard is more common than we think.

    Anyway, I wanted you to hear that the drs may say they will not take them and recommend the reexcision but I want you to rest assured if they do this that many of us have had this done the second time and got the clear margins.

    Keep us posted!

    BTW- I have been posting on another thread about back aches and anxiety, dr ordered a bone scan, had it done on Friday. I GOT THE GOOD NEWS my Mammo and bone scan are CLEAN!!! SO HAPPY! Now, tomorrow, I need to go in for my routine Zometa infusion, but I am one happy girl going in there with my good news, from here on out it is maintenance!!!!

  • sheila888
    sheila888 Member Posts: 9,611
    edited January 2010

    SmileNicoleSmile

    ♥

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