Did everyone get a "Stage" of their BC?

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LibbyD
LibbyD Member Posts: 25
edited July 2016 in Just Diagnosed

First thing everyone asks me is what stage I am? They didn't tell me I was a stage anything, just that I have BC. Anybody else not have a stage yet?

Comments

  • mustlovepoodles
    mustlovepoodles Member Posts: 2,825
    edited June 2016

    They can't stage it until you have the surgery to get the tumor out (lumpectomy, most likely).  They can learn from the MRI  about how big it is & the biopsy will tell what kind of cancer you have (IDC, DCIS, etc) and what grade it is, but not the stage.  The grade just tells them how aggressive or non-aggressive it is. 1 is not aggressive, 3 is aggressive.  They can also tell if your tumor is hormone receptive. After you get the tumor out they will be able to tell you exactly what the stage is and how big the tumor is. If it is ER+/PR+, they will probably do an Oncotype, which is a test that helps determine whether you would benefit from chemo or not. Most women don't have to do chemo, by the way. If your Oncotype is low, they may just recommend radiation and hormone suppression. 

    good luck to you!

  • BlueKoala
    BlueKoala Member Posts: 190
    edited June 2016

    My breast surgeon wasn't all that concerned about staging. She gave me a stage of IIb/IIIa (I am doing neoadjuvant chemo), but said it didn't really matter all that much.

  • JBeans
    JBeans Member Posts: 388
    edited June 2016

    I was never given a stage. I did read about the tumor sizes and lymph node results in my pathology report after surgery and came up with my own conclusion after reading some literature on stages and what they mean.

    People ask me too - I just tell them what I came up with based on the above.

  • HelenWNZ
    HelenWNZ Member Posts: 485
    edited June 2016

    I was the same and came to my own conclusion based on the results of my pathology report.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2016

    I was given a tentative stage after the mammogram and ultrasound of Stage 1 which was based on the tumor size... After my lumpectomy the stage was confirmed as Stage 1 and then Grade 1 was added... The pathology report also indicated no lymph involvement

  • Kawigirl1260
    Kawigirl1260 Member Posts: 60
    edited June 2016

    I didn't get a stage until after my lx. I was given a grade of 1 at dx, but was told they had to know lymph-node involvement and tumor size before they could stage it.

  • LibbyD
    LibbyD Member Posts: 25
    edited June 2016

    Thank you for your responses. I was thinking maybe I got one and didn't hear it,,lol,, after my doctor said Cancer, I didn't hear much after that. Mustlovepoo, I am having a double mastectomy on the 13th, right now, my tumor is 9 cm.

  • CatsRus
    CatsRus Member Posts: 310
    edited June 2016

    Does 'common or garden' cancer count as a stage? 😉 No, no one told me the stage. I asked one doctor and she said it didn't matter. Before my surgery my BS speculated 1b or possibly 2a but that was when we thought there was no node involvement. I had cancer in one node. Nothing about staging was ever mentioned again.

    Be well all 💕

  • MelanieBC
    MelanieBC Member Posts: 74
    edited June 2016

    My mom was told Stage 2 at diagnosis but after surgery it was bumped to Stage 3C. That said, the Doctor said that they realllllly try not to focus on the stage and just getting it treated and the person better. I hate when people ask what stage it is....

  • Icietla
    Icietla Member Posts: 1,265
    edited June 2016

    My stage was not determined until my mastectomy surgery got the remainder of my tumor and my removed lymph nodes examined.

    There is no good reason for *everyone* to ask what is your cancer's stage! I mean, they are not you, and they are not your health care providers. *Everyone* is not making your treatment plans. I cannot think of any practical need for *everyone* else to know that about your disease state.

    The very few (the closest and most discreet) persons in my life who know of my cancer (other than my health care providers) ask how I am doing and if there is anything they can do to help me. Their concern is that I am being taken care of, no matter what my disease state.

    I would be as put off by someone asking for that (staging) information as I would be by their asking how much time I have left to live.

  • edwards750
    edwards750 Member Posts: 3,761
    edited June 2016

    I did after my Path report. As it turned out my BS staged my tumor incorrectly according to my Oncologist. He staged it 2a- she said should be 1b. Doctors can deny all they want that it doesn't matter what stage you are. Try telling that to a Stage IV lady. I get not fixating on it but it does matter and so does the grade. My BS was quick to point that out too. There is a big difference between grades 1 and 3. If it didn't make any difference why aren't the treatments all the same?

    I wanted the whole skinny when I was DX not what I wanted to hear but just the facts. You can't disguise them. I do avoid reading expiration dates though because those are truly estimates.

    Diane


  • boricua_63
    boricua_63 Member Posts: 92
    edited June 2016

    Hi LibbyD

    I didn't get my stage and grade until after my mastectomy. Which I was told on my post op appointment with the BS. And on my first oncologist visit, she confirmed the stage and the grade.

  • mitchells08
    mitchells08 Member Posts: 1
    edited June 2016

    I was told at my diagnosis yesterday that they do not stage breast cancer anymore and do no use it, they only give it a grade

  • Hopefloatsinyyc
    Hopefloatsinyyc Member Posts: 211
    edited June 2016

    I think people ask about stage because, to the average person who has never dealt with this terrible disease, "stage" seems to be the only differentiator they know about. Like many posted above, my Oncologist predicted stage based on initial biopsy, but until removal and full analysis is done, they can't truly stage the tumor. Grade was known however.once final post BMX pathology is in- I will be given a concrete stage and I will be treated as such.

    Until going through this, I would have considered stage as vital info as well- but now I try to explain to people who ask, that there are SO many types of BC (IDC,IBC,DCIS etc), that doctors concentrate on that along with grade and hormone involvement more than simply giving it a stage and treating it based on this number.

  • edwards750
    edwards750 Member Posts: 3,761
    edited June 2016

    Of course the type of BC matters. Some are more aggressive than others. I have IDC which I was told is the most common BC. My BS told me I had a wimpy cancer whatever that really means. Thing is he said that to a friend who had BC as well. I think at the timehe was trying to talk me off the ledge.

    Diane


  • Artista928
    Artista928 Member Posts: 2,753
    edited June 2016

    9 cm? That's stage III. I was II at MRI when they saw 4 cm and 0 node involvement but then they pulled out total of 7 cm and that alone sent me to stage III.

  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited June 2016

    Don't stage breast cancer anymore? It's been a few years since my dx, but grade doesn't tell the whole story. Has any one more recently dx'ed heard that as well

  • Moderators
    Moderators Member Posts: 25,912
    edited June 2016

    Perhaps your treatment team is doing things differently. If you would like to understand more about staging, you may find this page helpful: Staging


  • LibbyD
    LibbyD Member Posts: 25
    edited June 2016

    Thank you Moderators, was kind of scared there for a moment, but I read your link, and it said it's only considered stage 3 if it has spread to lymph nodes, and my lymph nodes are clear so far.

  • Kawigirl1260
    Kawigirl1260 Member Posts: 60
    edited June 2016

    I got my dx in Dec. and was given a grade. Had lx in January and was given a stage. So my med team still stages.

  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited June 2016

    mitchells, may I ask where in the world you're located? One would think there'd be a universal standard of care, but on these boards we've seen it can vary dramatically based on which country you're in and what financial & physical resources are available to pay for treatment, do procedures and even train care teams.

    Here in the US, I've NEVER heard that they don't stage any more, or that only grade matters. To put it delicately, bull...t One cannot be definitively staged before the tumor is removed surgically, measured and the nodes are biopsied to check for node involvement. Often, though, one's tumor can be preliminarily staged after diagnostic imaging and biopsy--based on estimated size as observed in imaging and whether signs of nodal involvement are absent or present. In my case, it was IDC (so it wasn't stage 0), they thought it was <1cm and assumed for the time being my nodes would be negative, so it was preliminarily staged as IA. After surgery, it was 1.3 cm, and the nodes were negative, so it remained stage IA. Other things that the biopsy determines are the type of cancer: DCIS, IDC, ILC, LCIS, and the rarer types. That is probably the most important threshhold determination. Next comes grade--which is a formula based on how different it looks from normal cells, how hard it is to distinguish nuclei from the rest of the cell, how many “tubules" are formed in the tumor and most crucially, the mitotic score (or how fast the cells are dividing and thus how fast the tumor is growing). Grades are 1, 2 or 3 (1 being the slowest and 3 the most aggressive)--but in rare cases some 3s don't get chemo and some 1s do--based on other characteristics such as size, node involvement, hormone-receptor status and HER2 expression and even patient age (younger women generally get more aggressive cancers).

    So maybe in your neck of the woods they don't stage tumors before they're removed and the nodes biopsied (they don't want to count their chickens before they're hatched), but grade is usually easily determined on initial biopsy (usually the hormone-receptor and HER2 status is too, but not always). But make no mistake--after the tumor is removed, stage is a very big deal and along with receptor & HER2 status, is often the prime determinant of treatment going forward.

  • Sjacobs146
    Sjacobs146 Member Posts: 770
    edited June 2016

    I found out my stage officially post treatment when they gave me a packet with my treatment details in case I go to different doctors or live in a different place the next time I am diagnosed with breast cancer. Some chemos have a lifetime maximum dose, and you definitely can't get radiation in the same Breast again, so treatment details are very important

  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2016

    I was given my stage, not sure how. Maybe pathology write up. Anyway, not all ER/PR+ get oncotyping either, as one member claimed above. I didn't. I had + nodes and 2 c. and so it was chemo for me, regardless of hormone status. But I didn't argue against chemo anyway--I wanted every tx I could get.

    Claire

  • AnimalCrackers
    AnimalCrackers Member Posts: 701
    edited July 2016

    When I was waiting for my biopsy results I read everything I could find on the internet to get a handle on what I would be dealing with and I really wanted to pinpoint the stage. I guess you could say I was "stage obsessed". I had always associated cancer and survival with a stage. The higher the stage the closer to death you were. At least in my then uneducated mind that's how I processed it. So my "research" on the internet put me at stage 2a or 2b or something like that and my fears were somewhat assuaged by that self diagnosis. I told myself I would be ok with a stage 2 diagnosis but stage 3 or, God forbid, stage 4 would be devastating. So I was convinced I was 2a/2b and was just waiting for confirmation from my BS. When my BS called me with the biopsy results she never mentioned a stage so of course I asked and even pressed her on whether it was 2a or 2b. She said she didn't really work with or use stages, or words to that effect. I can't remember exactly how she phrased it but at the time I thought that it was so strange. It wasn't like she knew the stage and wouldn't tell me. She didn't say - oh we can't determine the stage yet until we do x y or z. It was more like the stage was a non issue. From what some others have posted in this thread this seems to be becoming a trend; not focusing on stages. At any rate, she was very positive and reassured me that she would be able to take care of this and I was going to be fine. The plan was to have neoadjunctive chemo to shrink the tumor and then a lumpectomy and I would be on my merry way. But first she sent me for an MRI to check out the other breast, which she admits to this day, that she doesn't always send patients for an MRI. Well, thank goodness she did this time. The MRI picked up abnormalities on my sternum which led to a bone scan and bone biopsy, and whatya know Stage IV bone mets. That's one stage you don't need surgery to definitively determine. Alas, I'll never know what stage I would have been assessed as had they not found the mets. Whatever it was, it would have been wrong. I will never understand why people aren't tested for mets at initial diagnosis but that is discussion for a whole new thread I suppose.

  • MelanieBC
    MelanieBC Member Posts: 74
    edited July 2016

    I an sorry if I offended anyone by saying the stage doesn't matter. It isn't truly what I meant, more like the doctors try to take the emphasis off of the staging and more on just fighting the disease no matter what stage you are. So if you are a stage 1 or a stage 4, you continue to fight hard.

    We are in Ontario and my mom had a full body and bone scan prior to any surgery or treatments being done to ensure there were no mets.

  • CatsRus
    CatsRus Member Posts: 310
    edited July 2016

    I am in Ontario and had bone scan and abdominal ct scan after surgery and finding out it was in one node

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