Her 2 Postive Estrogen Negative-Survior Stories

Options
jengrsq
jengrsq Member Posts: 26
edited June 2014 in Canadians Affected by Breast Cancer
Her 2 Postive Estrogen Negative-Survior Stories
· Share on FacebookShare on Twitter

Comments

  • jengrsq
    jengrsq Member Posts: 26
    edited November 2007

    Hello Girls,

                      I'm Canadian girls and I can really you some encouragement is there any Her2 Positve with Er- and Pr-. I presently on my journey and what I read about Her2 postive I could really use your help.

    · Share on FacebookShare on Twitter
  • mommy_mia
    mommy_mia Member Posts: 81
    edited November 2007

    Hi jengrsq...I'm Canadian too with same diagnosis.  I'd love to hear some success stories too!

    I had my second treatment on Monday.  3 rounds of FEC followed by 3 rounds of Taxotere.

    Have you started treatment yet?

    Mia

    · Share on FacebookShare on Twitter
  • Jenniferz
    Jenniferz Member Posts: 541
    edited November 2007

    I am not a Canadian, but I have a Canadian son-in-law....can I help? Wink I am Er/Pr-, but Her2+.  I wasn't given any chemo, because my tumor was so small, plus the fact that I had a mastectomy.  (That was my choice.) I was dx as stage 1A, no nodes, clear margins. For some very odd reason, my onc. has given me Femara to take for 5 years.  As he is no longer under my insurance umbrella because I have changed, I will be looking for a new onc. this week, and it will be interesting to get his/her take on things.

    I would have loved to have been given Herceptin, but this old onc. said that it was not given without chemo, and he said that chemo only changed the percent of reoccurance by something like 2%, and he felt it wasn't worth all the side effects.  I hope he's right.  So far, I am almost 18 months into the bc journey, and feel fine.

    Jennifer

    · Share on FacebookShare on Twitter
  • mommy_mia
    mommy_mia Member Posts: 81
    edited November 2007

    tee hee...good to see your sense of humour has survived too Jennifer!

    Can I ask about your experience with the mastectomy?  I have to have more surgery when the chemo is done, but they won't talk to me about it in detail yet because "I have enough to deal with".

    I'm fairly certain that I want to push for a mastectomy, even if they don't want to do it.

    Love to hear your thoughts...

    · Share on FacebookShare on Twitter
  • Jenniferz
    Jenniferz Member Posts: 541
    edited November 2007

    Hi Momma,

    My experiences haven't been bad at all, so don't worry.If you go this route, you will be fine.  For about the first 12 hours, I really did feel "unbalanced", but the nurses at the hospital said that that was normal---I was unbalanced.  But, it's amazing how fast your brain learns to overcome.  I had a skin sparing mastectomy, in the thoughts that I would have reconstruction, but have decided to wait until I pass the 5 year mark, then will make up my mind.  I did have an infection at the tube site, but that doesn't mean you will.  I feel mine was caused(in part) by heat. I am in Texas, and my surgery was in the summer.  Yes, we have air conditioning, but still----

    There was an "odd" feeling that I have a hard time describing....it was like a cramp, but it didn't hurt.  It would tighten, then it would release.  It could have been fluid, as I did loose eleven nodes--all negative, thank goodness.

    On the positive side, I am adjusting to the new me, and have accepted the new normal.  For now the cancer is gone, and that is all that really mattered to me, and to my family.  Hopefully, it will never return.  I do pretty much what I want, with a few breaks in between.  I try not to lift to much with the left arm, and try to keep most weight on the right.  Sometimes, that doesn't always work out, but I haven't seen any ill effects yet.

    It is your body, Momma, and if you want a mastec., the I feel that your surgeon should do as you ask.  My surgeon had a split second where I feel that he was going to say "NO", but then, he said that he would honor whatever decision I made.  And he did. When the pathology report came back, in addition to the  IDC, they found an incidence of DCIS in the same breast.  That never did show up in the original mammogram.  SO, I am happy with what I did.

    I hope all goes well, my dear, and if you have any other questions, just ask!!

    Jennifer

    · Share on FacebookShare on Twitter
  • chemomom
    chemomom Member Posts: 171
    edited November 2007

    Hi ladies, I am 32 and am HER2++ and ER/PR-.  I was dx'd on 7/16/07 and ended up with a tumor the size of an orange by the time I had my first chemo on 8/2.  I received Taxotere, carboplatin and Herceptin and it works wonders!!  I had treatments 3 weeks apart and by the time I was back for my 2nd treatment the tumor was no longer even palpable.  Amazing stuff. 

    I had 4 neoadjuvant chemos to shrink the tumor and then I had a bilateral mast on 10/25 (1 prophylactic).  Now I have 2 more chemos, then radiation for 6-7 weeks and then Herceptin every 3 weeks up thru July, I think.

    The stuff on the internet about HER2+ is horrendous.  I read plenty when I was first diagnosed and finally decided I just had to move on and do everything I could to fight the cancer and prove those nasty numbers wrong.  Now i really believe a lot of the HER2 info is  OUTDATED! 

    My onc is super and I really trust her and her judgements.  After my mast, I asked her to give it to me straight and tell me if I still had a high risk of recurrence (I have a family with 2 young kids!!).  Not only did she say she doesn't think so, but that at a recent conference in San Francisco, Calif. the conclusion was that now that Herceptin is available for people before they hit stage IV, being HER2+ is actually among the most treatable forms of breast cancer to have. 

    Based on what I experienced first-hand in my own situation thus far, I really believe what she is saying.  Now I also get huge doses of Carboplatin due to my previous tumor size, so I can't give Herceptin all the credit.  But I can also say I had no other suspicious areas and no positive nodes even though my tumor had measured over 8cm.  So in my mind, something definitely worked to stop that thing from spreading!

    My advice-- ask your oncologist for Herceptin.  If they say no, find out why.  Maybe even get a second opinion at that time.  Being HER2+ is no longer a death-sentence.  We can fight and win this battle.  Good luck as you start treatments and I will be trying to follow along on this thread to see how you make out.    Angie

    · Share on FacebookShare on Twitter
  • Jenniferz
    Jenniferz Member Posts: 541
    edited November 2007

    Angie,

    From what I understand, there is not trial out there that is using Herceptin alone.....maybe I'm mistaken here, but I was told that by two different doctors.....at two different times.  So, since I didn't have chemo, then I was knocked out of the herceptin picture as well. The size of the tumor was less than 3 mm.

     Do I like it?  No. But, all I can do now is move forward, and try not to let the fear elephant take over my whole being.  I will be seeing a new onc next month, I will be interested in hearing his/her take.  But since I'm this far out, any treatments (I think) will be if and when I have reoccurances.  I hope that's never.

    · Share on FacebookShare on Twitter
  • chemomom
    chemomom Member Posts: 171
    edited December 2007

    Jennifer,  I am having chemo but once I am thru with that I will be on Herceptin alone up until at least July.  But a 3mm tumor certainly has different rules than an 8cm tumor.  Even with chemo and all the meds in the world, all we really have to get by on is hope for the best.  Wishing you well, Angie

    · Share on FacebookShare on Twitter
  • mommy_mia
    mommy_mia Member Posts: 81
    edited December 2007

    Hi Jenniferz,

    Thanks so much for all of the info.  I didn't realize there was a "skin sparing" option.  Definately something to consider.

    It's great to hear your story and know you are doing well.  Even though you say "only" 18 months, it makes us newbies feel good to know there are others out there that are doing well.

    Can't wait to hear when you are ready for your reconstruction!

    Take care,

    Mia

    · Share on FacebookShare on Twitter
  • Jenniferz
    Jenniferz Member Posts: 541
    edited December 2007

    Jenqrsq,  did we help?  As you see, even though we are the same, we are different in treatments, and are ALL still here!  Where are you in your journey, and did you get any chemo at all? Try not to let the Her2 positve thing scare you.  You'll do just fine.

    Thanks Momma and Chemo mom. Angie, I think the way you are getting the Herceptin is the way it is given.  But, they still say that it is in conjunction with chemo. If would have had the choice, it would have been Herceptin with nothing else before it.  But, alas, it wasn't to be.....Oh, well!! Still here stirring up trouble!!Wink

    I 'm so happy I could help.  Let me know how you guys are doing in this journey too, ok?

    Many hugs,

    Jennifer

    · Share on FacebookShare on Twitter
  • mke
    mke Member Posts: 584
    edited December 2007

    Well I'm still alive, still walking, so I guess I'm a success.  I'm about 22 months post diagnosis HER+ ER/PR-, node positive.  I had neoadjuvant chemo, lumpectomy, rads, 18 herceptin and finished the last of it some time last summer.  I don't remember dates of bad stuff, just seasons.

    There is another web site her2support.org that has lots of success stories and a fair amount of info that is HER+ specific.

    I don't read too much stuff about Her+, I figure much of it that is on the net is obsolete.

    · Share on FacebookShare on Twitter
  • Carmelle
    Carmelle Member Posts: 388
    edited December 2007

    My childhood friend diagnosed one year before me in Fall 2001.

    Her+++ Er-Pr-

    4+ nodes after chemotherapy completed.

    Cancer free today 6 years.

    · Share on FacebookShare on Twitter
  • jengrsq
    jengrsq Member Posts: 26
    edited December 2007

    Good Day Everyone,

                                   Thanks girls for your stories. You have given me and others hope and encouragement. Presently I'm on chemo Taxotere and herceptin together before surgery. Everything is going well. I am so greatful to all of you helping me and I thank "God" each day I wake. Each night I pray for all of you. Thanks again for your stories for the next person who will be starting their journey they have your stories to read.

    "God Bless You All"

    · Share on FacebookShare on Twitter
  • lkc
    lkc Member Posts: 1,203
    edited December 2007

    I just want TO ADD MY 2 CESNTS,

    dXED WITH STAGE IIIC, er/pr neg, her pos. May 05. Did lumpectonmy, then mrm,then

    Did dose dense acX 4 taxotere(X4) with Herceptin,

    did prphylactive left mrm

    and today am NED and doing great.

    Remember there are no  long term stats on Her pos.

    We'll be around for along time.

    God Bless

    · Share on FacebookShare on Twitter
  • Sierra
    Sierra Member Posts: 1,638
    edited December 2007



    Hi Gals:



    When I took TX

    they did not do my HER2



    but I am er-pr- neg. Grade 3

    node positive



    and moving up to eight years,

    feeling v. blessed



    feel free to PM>>



    Im not on here as much

    any more



    Very best to you..



    Hang tight...

    round those sharp curves

    and challenging days





    :))

    · Share on FacebookShare on Twitter

Categories