Stage III versus lower

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  • InTwoPlaces
    InTwoPlaces Member Posts: 354
    edited December 2010

    Seyla,

    My Onc told me that the normal grades for HER2-poitive was around 3.---something. I don't know what 2.2 is.

    He said that my 18.3 was the highest number he had seen.

  • sheila888
    sheila888 Member Posts: 25,634
    edited December 2010

    He wrote on a paper

    ER=90%

    PR=10%

    HER-2=2.2

  • sheila888
    sheila888 Member Posts: 25,634
    edited December 2010
    Im sorry one more question. Could 2.2 be the grade. I didnt even know they were gradedEmbarassed
  • InTwoPlaces
    InTwoPlaces Member Posts: 354
    edited December 2010

    Sheila,

    Did you take the FISH test? It should be stated on your Pathology report.  I don't know what they call them, if it's grade or score.

    Maybe Lago knows the answers!?

  • lago
    lago Member Posts: 17,186
    edited December 2010

    Sheila check the link hear. I do believe 2.2 is HER2+ but I would think they might want to do a FISH test too: http://www.breastcancer.org/treatment/targeted_therapies/herceptin/for_you.jsp

    My test was FISH

  • sheila888
    sheila888 Member Posts: 25,634
    edited December 2010

    Cases were classified into positive for HER2 gene amplification (FISH ratio ≥ 2.2), negative for HER2 gene amplification (FISH ratio <1.8), or intermediate for HER2 gene amplification (FISH ratio of 1.8- 2.1 or presence of

    I just found this info.

  • sheila888
    sheila888 Member Posts: 25,634
    edited December 2010

    I'm sorry ladies i really feel stupid now because i don't have my pathology reports.

    I see my Oncologist for my follow up in February.

    i wasnt on these boards when I was DX. All I knew my stage and ER> PR, HER2.

    i guess if you dont know you dont ask questions. I learned about my grade after I joined BCO 

    Thank You

  • Marple
    Marple Member Posts: 19,143
    edited December 2010

    Seyla, you aren't the only one who feels kind of dumb.  When I found out my grade and stage I had NO idea what it meant.  All I knew at the time was that oncotype testing would do me no good.  My tumor was too large and I had a positive node.  I learned that in the chat. 

  • janette1958
    janette1958 Member Posts: 17
    edited January 2011

    Ditto!!! Well said, as we all comfort each other in this time of need and support.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2011

    Barbe1958:  I guess that was me earlier posting about oncotype score.  In my case, prior to the mast surgery, we sent the biopsy sample out for the onco score.  So yes, it is possible to have a biopsy score, which was very low (11), then after the mast surgery the pos nodes were discovered and the  onco score means nothing. I had a month between the onco test and then lymph node dissection. 

  • Elizabeth1959
    Elizabeth1959 Member Posts: 346
    edited January 2011

    Dear Group

    I had an oncotype DX done on my tumor although I had one positive lymph node.  According to the report I received this represents "clinical experience: prognosis and chemotherapy benefit for post menopausal node positive, HT-Positive patients."  The results are from a clinical study of 367 people and provides the average rate of recurence at 5 years.  Recurrence was defined as local or distant recurrence, new primary breast cancer or death from any cause.  ( I would think for most of us this is really the information we want.  Is this going to come back and am I going to die from this disease?)

    The treatments were CAF-T for chemo and tamoxifen for hormone therapy.  (Perhaps survival is even higher now with AI's and newer generation chemo regimens?) 

    Patients are then divided into 1-3 nodes and >4 nodes.

    Because I had a 16 cm slow growing tumor missed on previous mammograms, I had chemo even though I have a low breast cancer recurrence score. 

    I share the anxiety of many in this group.  I've never heard of anyone else with such a large tumor.  It's hard to find anyone to compare myself with.  I worry constantly that I will die from this disease.  I hope by participating in this group, I will gain some wisdom as to how to live fully despite this disease.

    Elizabeth 

  • LizM
    LizM Member Posts: 963
    edited January 2011

     I am a node positive stage IIer and regularly came to this thread since 2005 because being node positive I felt like a lot of the topics discussed here pertained to me.  I notice now that there is a stage II with positive nodes thread that wasn't available to me in 2005.  I do understand how the original poster feels, especially if she is newly diagnosed.  You want to speak with those who have similar diagnosis', especially those long term survivors because it gives you comfort and hope.  However, one thing I have learned in the 5 years since I was diagnosed is that the fear of recurrence is just as real and just as strong in all stages and that we all can provide comfort and support to each other no matter what stage we are.  If I would not have come to this Stage III forum many years ago I would have missed out on a lot of comfort and support I received from Sherri and many others in this forum.    

  • nobleanna007
    nobleanna007 Member Posts: 641
    edited January 2011

    Hey poping in on this subject, since at one time I was where the writer was,

    I made the :"Mistake to ask a question which I thought  a stage 4 person would know the answer. Instead anyone who dares ask a question that is not in the right forum we are slammed!!! This is not right, The only reason I would ask someone from a higher forum is because I would think they would have much more knowledge!!! Instead we are told we should not post there!!! 

    This is why and ALOT of my B.C. friends do not post here anymore!! I find this sad!!! Cause their is a few of you that have been supportive whether you are stage 1 or IV. You know who you are!! And I soooooooooooo thank you!!! In the last year after we lost some major people I have noticed the decline. I really don't care if a person is stage 0 or stage 3 It is a luck of the draw. I felt bad cause a friend of mine was dignoised with stage1 and she felt bad cause she said too me I should not complain cause I only have baby cancer. WHAT!!!!!!!!!!!!!! Cancer is Cancer!! Yeah my percentage is higher than hers butttttttttttt I think everyone has that chance of getting it back!!!

    Sooooo I really hope all of you keep posting, and ask your question's, their is some of us who understand!

    HUGS,

    B.

    "

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2011

    Hi nobleanna,  I do get what you're saying.  I welcome postings from all the stages of our sistas.  I hope that the stages 0 to IV would contribute to this forum.  We all benenfit.  There can be those who might say something a little offensive or with lack of understanding about what stages III and IV ladies face each day, but over all I am always happy to offer encouragement and support to all stages.  I do feel however that it's important to be able to go to the forum of our stage for the support of other like stages, and I am so glad to have this forum of stage 3ers here, a wonderful group of women to go to.  Peace and health to you all.

    image

    Barb

  • nobleanna007
    nobleanna007 Member Posts: 641
    edited January 2011

    Thanks Barb,

    I thank-you for responding,

    I agree as you do too a point. I think the ladies above us who have been where we are have invaluable imfo. I know sometimes I have ?s that someone in our own stage can not answer.

    Is it wrong to ask someone in the higher level to ask a question???? I would always do my best as I have tried to answer what I can. I do not care if I was stage0 or 3 I would try, if I can't I would not answer. But that is me and their is alot of diffrent personalities on this board.

    Thanks for responding too me cause believe it or not I used to come on this board alot, and being stage3 and trying to fit on tis board was hard and never felt I belonged!

    But as you can see I do put my 2 cents in! LOL!!!

    HUGS,B.

  • Cat123
    Cat123 Member Posts: 296
    edited February 2011

    I think we can all learn from all the women on the boards and it doesn't matter what stage someone is at.  My docs have not told me what stage I am at but I know from the stats that I am stage III.  But I don't think it always makes a difference because there are so many variables with every stage of cancer so we are all in the same boat.  The most important thing is that we support each other and give each other information that we gather.  I have sat next to stage 1V sistas in chemo and they were diagnosed ten years ago with stage 1V!  We are survivors!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2011
    Cat123 `  I don't beleive we are all in the same boat.  As one stage 4 girl posted earlier on this thread We aren't all quite in the same boat.  For example, when you're Stage IV you know you're toast and on treatment indefinitely. I'd love to hop into someone else's BC boat...Sorry for the intrusion.I as a stage 3er feel that my onc is using the most aggressive treatment based on my stage.imageBarb
  • 1Athena1
    1Athena1 Member Posts: 6,696
    edited February 2011

    The current staging system has come under question more and more by researchers because some doubt its predictive value in terms of prognosis. It could be that we are erecting artificial walls. We could be committing a more serious error by assuming that a person at a certain "stage" has to feel a certain way or "know" certain things. Lots of stereotyping and clique-ism can --and has-- hurt.

    I am Stage IIB but some DCIS women had more treatment than I did because I had to stop treatment and refused other treatment, so stage is not even indicative of treatment.

    It could be that in a few years staging will have very different guidelines. Guidelines already vary slightly by continent. IMO, really and truly, the only distinctions that should be made are: non invasive, invasive and metastaticas far as BC gravity goes. Then you have aggravating factors like triple negativity or mitigating factors like tumor types with better prognoses, but, honestly, it would only make sense to have the ridiculous number of forums by stage that we do in BCO if we were all robots who could be entirely defined by our pathology reports. If we were not individuals with strengths and weaknesses. As it is, we have a laughable number of forums by stages that do not reflect well on us as bickering women, frankly. The forums we have on subject matter or type of treatment are great. 

    There is no definitive, clear line between someone who has a 1 cm tumor with 1 node and a 3 cm tumor with four. In human terms - in terms of how much suffering a person can bear - it may even be hard to argue for a difference between DCIS and IBC. Some people wilt at the slightest provocation, while others persevere in the face of seemingly impossible odds. You have DCIS women developing PTSD, and stage III people swallowing hard but moving along. You have DCIS with mastectomy, radiation and Tamoxifen, and Stage II with nothing due to a comorbidity. Generalizations are neither fair nor possible.

    I abide by this segregation and rarely venture into threads specified by stage because that is what the general preference is. And you stage III ladies do seem closely knit, which is nice, so I prefer to leave you alone (unless the topic of Zometa comes up :-) ).

    It is not, however, predictive in scientific or human terms that if you are of a certain stage you "belong" in x or y place. There may be anger and frustration at a cancer diagnosis, but please let's not take it out on others who may be more in our boat than we know. It is important to show compassion for those in higher AND lower stages.

  • Ellie1959
    Ellie1959 Member Posts: 316
    edited February 2011

    I was diagnosed as 3A -  I guess but only had microinfiltrates in 1-2 lymph nodes. My Dr. just says my cancer is Early stage - locally advanced. I think this place basically dx'ed me. I kind of see both sides of the coin. I do tend to look at Stage 1's and think -man, she's lucky - but as I have read many times- Stage 3's get bombarded with TX - and in my mind that is a good thing.

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited February 2011

    Because stage 3's get the kitchen sink thrown at them, since I've been on these boards I've seen more stage 1s and 2s go on to mets. Perhaps everyone needs to be treated the same after all! Staging is for treatment purposes. I've seen more stage 0 ladies getting mastectomies than stage 3. I think they're going to realize that cancer, is cancer, is cancer...and has a mind all it's own.

  • lago
    lago Member Posts: 17,186
    edited February 2011

    I agree barbe. I feel like I got treatment more in line with stage III than stage II.

  • NannaBaby
    NannaBaby Member Posts: 510
    edited February 2011

    We are here to support each other :) No matter what stage!  Those without cancer, and read/post on these threads are welcome too! Share the knowledge :)

  • LizM
    LizM Member Posts: 963
    edited February 2011

    I totally agree with Athena.  I have found that those with stage 1 are just as scared as those with stage III.  And if the cancer is invasive, it is a very serious disease that should not be taken likely.  As  a stage 11ber I have been coming to the stage III forum for over 5 years  because I had the same kitchen sink thrown at my cancer type treatment and I found the regulars here very knowledgeable and helpful.  Never in this time did anyone even hint that I did not belong here.  If you have had breast cancer you are in the club that none of us wanted to join and we all need comfort and support no matter what the stage or biology of our bc was.   Plus I was just readng the other day that studies are now showing that ithe size of the tumor doesn't matter as far as recurrence - that the biology is more important.  We have been heading in that direction for a while and I wouldn't be suprised if the whole staging criteria changed. 

  • TonLee
    TonLee Member Posts: 2,626
    edited February 2011

    Staging is for treatment purposes. I've seen more stage 0 ladies getting mastectomies than stage 3. I think they're going to realize that cancer, is cancer, is cancer...and has a mind all it's own.

    Amen.  Staging, as it is right now, is such BS imo.  They use lymph nodes (as if cancer can't spread any other way).  I have met two women staged 1 who were told they were "cured.  Go on live your life.  It will not bother you again."  and now they both have it in their bones....

    This is the main reason I wouldn't let them take my axilla.  (Thank you NY Times for posting the study I used to fight for this choice on Feb 8th!!)

    They wanted to give me higher odds of LE for a staging system I have seen fail again and again?  NO WAY!  And in my case it didn't change treatment one way or another at all.

  • jennyboog
    jennyboog Member Posts: 1,322
    edited February 2011

    I think someone missed the whole idea of BC.org it's for support and info.  I know it's easy to compare stats and each others dx, we've all done it.  I personally stay away from threads that don't relate to me and my dx. But shouldn't we just be grateful that we're all alive to even complain about it, we're all going to die someday of bc or not so, who care what stage who is....point is a stage I got their world rocked and the "poo" scared out of them just like me (stage IIIc).  Life's too short to sweat the small stuff, that's what bc has taught me.

  • mumito
    mumito Member Posts: 4,562
    edited February 2011

    Well said Jenny

  • Kindergarten
    Kindergarten Member Posts: 4,869
    edited February 2011

    Hi, everyone!!!! I had bi-lateral breast cancer, Stage 2 in the left breast and Stage 1 in the right breast. I also had only one lymph node involved. One onc staged me, as he stated: All together you are a Stage 2B/3A. I felt kind of caught in the middle because of my unique situation. I just feel really comfortable posting in the Stage 3 thread. Hope that is O.K. I certainly respect both sides. God bless you all Kathy

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited February 2011

    Kathy, there are no sides....that's kind of the point of the last number of posts. We ALL have breast cancer. Some are more advanced than others, but that is not proving to have any logic in the outcome or risk of recurrence.

  • Kindergarten
    Kindergarten Member Posts: 4,869
    edited February 2011

    Well said, Barbe, We all have breast cancer, so it is very important that we support and side with each other, no matter what stage we are!!!! Have a great weekend, everyone!!!! Kathy

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2011

    I'm new to the Stage III board, having just learned from my BS that 12/28 of my lymph nodes are involved. I came to this board because the February Surgery board was getting depressing, as woman after woman celebrated her node-free status. I was totally happy for them, but I also began to feel increasingly alone. It's hard to read others' posts day after day, entry after entry, and at the end of each post be reminded that you are "worse off."

    So if my two cents are worth anything, I agree that it would be nice for this board to be a sanctuary where us Stage III gals can go to not be continually reminded that we are the sickest ladies in the room. Breastcancer.org is a big messaging system with literally tens of thousands of threads to post on. I, for one, would be very grateful if this one could stick to its charter.

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