What defines a lower-risk HER2-positive tumor?

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  • Sassa
    Sassa Member Posts: 1,588
    edited December 2008

    I'm sorry, Joni.  I didn't mean to imply that all women skip treatment to avoid SE's and losing their hair.  It is just the ones I read who seem to feel that their appearance is more important than their life that I want to smack upside their heads.

    I really feel for those of you that were not offered chemo and herceptin.  It makes me angry that it is not offered because (my theory) the docs know that the insurance companies will refuse to pay for chemo for small invasive components. No BC patient should have to worry that there might be something else that could have been done.

    Again, I apologize.

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  • JoniB
    JoniB Member Posts: 346
    edited December 2008

    Mary Jo,

     Thanks for your reply - I greatly appreciate it. Wishing you a happy and healthy new year.

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  • swimangel72
    swimangel72 Member Posts: 1,989
    edited December 2008

    Wow - this discussion makes me realize once again how lucky I was to have an oncologist who offered me an unconventional chemo regime with Herceptin. Being Her2++++ but less than 1cm and node negative, put me in a gray area - but my oncologist checked with his board and decided to be aggressive with me - even though I already had a mastectomy. He said Herceptin works well as long as it's given with ANY chemo, so he gave it to me with 4 months of Navelbine, which doesn't cause any heart side-effects, and doesn't cause hair loss. I had 3 other oncologists agree with him - I just wonder why I can't find any information about this unconventional approach online.  I truly feel like I'm the ONLY patient who has ever had Navelbine with Herceptin as a first line of defense. Usually Navelbine is given to patients with liver mets. Although I feel very fortunate that I was offered this treatment, I still feel nervous that it isn't the traditional chemo regime recommended for Herceptin - and I pray I never get a recurrence! Marilyn I'm so sorry to hear about your mets...............and forget the boxing gloves! I prefer my submachine gun pictured here with Signourney Weaver to kill the cancer "Aliens" attacking my body!

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  • bluewillow
    bluewillow Member Posts: 779
    edited January 2009

    Hi everyone,

    I have been reading these very interesting and very moving posts and I just wanted to echo the comments about how lucky we are to have Herceptin, and also how lucky we are to have ladies come here and share their experiences and knowledge.  I also want to elaborate on Sassa Mary Jo's post and say that I can understand and relate totally to what she said about those who were more afraid of losing their hair, SE's, and not willing to have chemo... When I was first dx'd, initial pathology report said I had DCIS and would only need radiation.  I was scared to death, but nevertheless, so very, very relieved and thankful I wouldn't have to had chemo.  In looking back, I wasn't so afraid of having breast cancer as I was the treatment and being bald, and that fear could very well have blocked my good judgement and tx decisions.  The thought of having chemo absolutely terrified me beyond description, mostly the side effects, since my brother-in-law had lymphoma (10-yr survivor doing great) and was horribly, horribly sick from chemo years ago and I thought I would be like that.  Plus, I felt being bald would officially announce to the world that I had the "C" word and I didn't want that, no way.  As it turned out, the final pathology indicated a HER2+ IDC .6 cm tumor with clear nodes/clear scans. Sensing my awful fears, my onc practically "preached" me a sales-pitch for chemo.  (If I had more knowledge of modern chemo and SE control, I wouldn't have been as scared. As it turned out, with help from all of you here, I faced it down, made it fine, wasn't sick, worked right through tx, and thought being bald was exhilirating)  Although he's not my favorite doctor, I am eternally grateful to him for pushing the chemo + Herceptin.  Of course, I was still scared, but found it wasn't as horrible as I thought.  I think we owe it to our BC sisters to try to get the word out that chemo is not fun, but very very doable and you will be ok.  I apologize to those of you who had a rough time with it, but praying that you made it through ok as well and can express similar thoughts. This has been my early-morning novel for today.  Have a great day, everyone!

    Mary Jo

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  • Dejaboo
    Dejaboo Member Posts: 2,916
    edited December 2008

    Hi Mariyln,

      Im sorry to hear you are now stage IV.  Im glad to hear you have responded well to your current treatment.

    Can you give us the full details of your Initial DX.

    You said it was DCIS with a Microinvasion.  How big was this microinvasion- You said under 1cm.  Which all micro invasions are- can you tell us the size in mm?  Also how wide were your margins? ( I do realize you had a BM)   Was it near the chest wall?

    ER+ or ER-?    And what grade?

    We sometimes hear stories like yours -but never all the details.  I know for me the full details help.

     (Sassa) I am also with Joni.  Most of us did not refuse Chemo/Herceptin.  Many of us are not offered it & if its not offered Insurance does not pay for those very expensive drugs.

    I also had to make the decision of risking damage to my heart that was already not great.

    Thanks,

    Pam

    " Liz & Mississippi girl, I'm new to this board and just have to jump in here.  I was also diagnosed with DCIS-L in 2004 and choose double mast. There was a spot of microinvasion>1cm...so stage one...all nodes clear...no chemo or radiation rec.  In this dx today...I believe it is handled the same way.  Here's my story...I am among the 2% of people that didn't get so lucky. Giving you facts...not trying to scare you. In 2007 I was diagnosed stage 4...spread to lung,chestwall & liver ...it had traveled by blood before surgery. I responded great to 5 rounds of TCH and have stayed on Herceptin for 14 months. I just found out it traveled to my brain and I had the Gamma knife procedure 2 weeks ago.  Feeling good and starting Tykerb today...reason is that it gets absorbed into the brain umlike herceptin. My situation is uncommon but I wanted to share ladies.

    We can't ever take our boxing gloves off!  Marilyn"

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  • Liz08
    Liz08 Member Posts: 470
    edited December 2008

    Sassa-

    I'm with Joni and Dejaboo, I wasn't even given the option of doing chemo/herceptin. If even one doctor said for me to do chemo/Herceptin, I would have definitely done it.  I was actually prepared to lose my hair, I even went out and bought a whole bunch of (colofull) baseball caps and got cataglogs on wraps and was researching wigs.  I consulted with 10 oncologists and ALL said the risks outweigh the benefit. Was I supposed to keep going to more and more doctors???  

    Did you know that chemo can also cause cancer in 10, 20, 30 years?  This is listed as one of the possible side effects of chemo.  Are you aware that there are studies that some (I believe 30-40%) of the patients that had Herceptin ended up with brain mets?  I found this info a while back on the John Hopkins website and few other sites.  Obviously, it's not very publisized probably for money making reasons....  This is very conincidental, isn't it?  Are there studies that prove Hercpetin will never produce side effects in 10,20, or 30 years? Is Herceptin absolutely safe long term?    With cancer there are absolutely no guarantees and we each have to decide on our own treatment plans and never judge anyone for their treatment choice but we should offer support to each other.  

    My treatment has absolutely nothing to do with losing hair or the cost of treatment!!  This comment made me extremely angry!!!  I have many physicians in my family and doctors want their patients to do well and they base their decisions on clinical experience, trials,  and knowledge.  

    I have 3 young children and was only 38 at the time and I pray several times a day that the right decision was made and that everything will be fine.  This is a very painful topic for me.  

    As Dejaboo stated: what are the tumor particulars?  When it comes to Her2, less than 1cm is very different from a microinvasion of less than 1mm or from an having an invasive component of only a few mm's. Remember stage 1 includes those who have had up to a 2cm invasive component; that's a broad range in size.  Women have said that they had a "microinvasion of 6mm" or "less than 1cm"; this is not a microinvasion, this is considered a good size invasive compenent if it is her2+++.

    There are also many women who have taken the most agressive route (BM, chemo/herceptin/rads) and unfortunately still ended up being stage 4 and those who did the light treatment and are doing well.  Keep in mind most(not all) women who are doing well move on with their lives and don't come to a support forum like this one. Many breast cancer survivors (that are doing well) who I have spoken to don't even know about this forum.  Also, testing for Her2 is a fairly new test and most long term survivors don't know if they were her2+++ or not.  

    My story:

    I too had DCIS (99% according to my doctors) and "focus of less than 1mm in it's greatest dimension of microinvasive carcinoma" according to my pathology report. I ended up being stage T1mic (below stage T1a), Er-, PR-, and Her2+++ and node negative. My slide was re-examined to be sure there was nothing missed.  I was only 38years old at the time (Feb 08').  To make you feel better about your treatment here's my story I ended up consulting with 10 oncologists regarding my treatment and all concurred no chemo and no Herceptin since they all felt the risks of chemo/Herceptin outweighed the benefits for me. I consulted with a wide range of oncologists ranging in years of practice,  some worked in major cancer centers(Dr. Eric Winer from Dana Farber in Boston and Yale in CT, Sloan Kettering in NY(my oncologist is originally from there) and some were in private practice, I even e-mailed John Hopkins and was told the same etc. I was told Herceptin isn't given without chemo since this is not the standard protocol and there are no concrete studies proving its effectiveness without chemo. Now this is only my story but I know of few others who fall in this category too.

    end of story.....

    I'm sorry if I offended anyone but I too feel offended by someone assuming that I had no chemo/Herceptin for vanity reasons!  Or accusing my 10 doctors of skipping out on treatment for insurance reasons.

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  • sandee107
    sandee107 Member Posts: 66
    edited December 2008

    Liz M

    You spoke my mind.  I too followed the advice of my doctors, which was no chemo, no Herceptin.  My tumor was so small that when I had my lumpectomy, there were no cancer cells found at all.  It was all removed in the original biopsy and most of that was DCIS.  I am highly ER+(96%) and my onc felt that was most significant, so I am taking Femara for 5 years.

    I followed the advice of my doctors and hopefully received the best advice.  If they advised me to take chemo and Herceptin I would.  I don't think there are many people who would turn it down for vanity reasons. I think once your are diagnosed with breast cancer, vanity pretty much goes out the window.

    Sandee

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  • JoniB
    JoniB Member Posts: 346
    edited December 2008

    I smiled when I read Sandee's post "I think once your are diagnosed with breast cancer, vanity pretty much goes out the window".  My brother in law is currently undergoing radiation for prostate cancer.  He was telling us about his upcoming tattoos for radiation.   I relayed that, in the past, the constant undressing, tattoos, simulations, would have been embarrassing but I don't even think about them anymore.  When he finally had his tattoos, he remembered our conversation and he thought "yup, doesn't even bother me anymore". 

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  • Liz08
    Liz08 Member Posts: 470
    edited December 2008

    I agree, when your diagnosed with cancer your survival instinct kicks into overdrive. Vanity never crossed my mind, therefore it definitely must have gone out the windowInnocent.  There's nothing vane about the constant undressing, simulations, tatooing, and laying there topless with your arms over your head every day for almost 7 weeks in front of complete strangers.

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  • Jaydee
    Jaydee Member Posts: 74
    edited January 2009

    Felt I had to join in here because of some of the comments made earlier in the thread.  Joni I remember we had a discussion early 2008 about our concerns over Her2 status.  I am borderline   (2+)  with 5mm invasive and associated DCIS of approx l0mm, ER/PR+ve and node neg.  I have even been told a FISH test is not necessary as there is no way I would be considered for chemo or Herceptin.  These treatments, necessary for certain bc patients, have far-reaching side-effects and should not be assumed to be the "cure-all"  for everyone.  I, like Joni, still have times when I feel slightly uneasy but am comfortable that Herceptin is there if I ever really need it.  I along with others here would do anything possible to prevent recurrence but each of our cancers if different and the "vanity" comment offensive (re not taking Herceptin because of side-effects).  Regards, Jaydee

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  • braceletgirl1014
    braceletgirl1014 Member Posts: 11
    edited January 2009

    LizM,

    I am so happy I found you here. My dx is so much like yours. I did not have any additional treatment after my mastectomy (LB) wich was performed in April 08, after I found out about my cancer in March 08. I feel great, recovered from surgery with no problems at all. I am surprised oncologists don't do any tests except for checking  other breast and scars on operated breast. I am seeing them every 3 months, had a mammogram in october, MRI of right breast because back in march there was something very small that looked benign but advised to check it every six months. It wasn't easy to go on with my life after all this new life. Thanks to my husband, family, great doctors and God I am where I am now. I also go to Dana Farber in Boston and that is because I choose to get a second opinion after I was going to Mass General Hospital. So, we are here and I am thankful for that :-) . I know everyone's dx is different but we have been touched by cancer and that is making us stronger and looking at life like never before. Life is precious and we have to live it as it is.

    Happy New Year!!

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  • Liz08
    Liz08 Member Posts: 470
    edited January 2009

    Hi Jaydee & braceletgirl-

    Thank you for posting.  Our very very very tiny microinvasive her2+++ tumors are not all that common but from the responses on this "topic" our treatment seems to be common for our particular diagnosis.

    Wishing you a Happy and Healthy New Year!!!!

    Liz

     

     

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  • Liz08
    Liz08 Member Posts: 470
    edited February 2010

    Hi-

    for those who had microinvasive DCIS that was her2+++, as of this afternoon we have our forum index (thanks to the moderators!).  Please feel free to post there. We can finally connect! The forum index is called Micro-invasive DCIS that is Her2+++.  Thanks!  Liz

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  • ladysingstheblues
    ladysingstheblues Member Posts: 7
    edited September 2010

    hello

    i just joined this site and have a diagnosis similarr to yours. i would like to know how you got along with the treatment

    thanks

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  • ladysingstheblues
    ladysingstheblues Member Posts: 7
    edited September 2010

    hello

    i just joined this site and have a diagnosis similarr to yours. i would like to know how you got along with the treatment

    thanks

    ladysingtheblues

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