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Will 30% of Early Stage (1-IIIA) go on to metastasize??

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  • gemini4
    gemini4 Member Posts: 320
    edited November 2013
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    I was a candidate for the OncoType test (mine was 16 -- highest number in the low-risk category, but my MO said still no benefit from chemo). My oncologists at my cancer center (at a Harvard teaching hospital) told me that they no longer do bloodwork, so I never learned my tumor markers. I'm not sure if this is only for early stage patients like me? But I do see others here with similar profiles who've mentioned having their blood tested. It's a bit frustrating how the standard of care varies by region.

  • lago
    lago Member Posts: 11,653
    edited November 2013
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    kayb tumor markers are reliable for other cancers but not for breast cancer. My onc told me she would not be doing chemo markers. She also told me she would not be doing regular scans unless there was a symptom. Granted my liver got scanned for 2 years because they did see 3 lesions that they concluded were just cysts after 2 years.

  • jojo68
    jojo68 Member Posts: 336
    edited November 2013
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    Lago...So, you haven't had yearly scans?  How do they monitor you>?

  • ruthbru
    ruthbru Member Posts: 47,237
    edited November 2013
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    No scans for me either, although I do get the tumor markers done. I know they are not very reliable; but a sudden, big jump could warrant further investigation.

  • lago
    lago Member Posts: 11,653
    edited November 2013
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    jojo68 I see my onc and BS once a year (basically see someone once a month) and they ask me if I have symptoms. That's it. I'm not worried. I don't worry about getting a heart attack or stroke. No symptoms so why worry?

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited November 2013
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    My last oncologist visit...


    Dr... "Hi. How are you feeling?"


    Me..."Fine. And you?"


    Dr..."Fine. Any symptoms or side effects?"


    Me..."Feel like the oven is on broil."


    Dr..."Too bad. That should get better."


    Me..."When?"


    Dr."Let's talk further in my office."


    Moments later in office...


    Me..."When will I feel cooler? "


    Dr..."It will get better. Any other questions?"


    Me..."No."


    Dr. "Good. See you in six months."


    Before he entered the exam room, attendant noted I had blood work done six months before and didn't need to take blood. All she took was blood pressure. Oncologist spent one minute tapping body parts and left room.


    No scans, no blood work. Spent all of twenty minutes in the office. Would have been done sooner, but appointment secretary was busy helping others.


    I'm VERY happy with my care. I'm glad my doctor spends little time with me. There's little for either of us to do or say. Also asked about anything new that I should know about and he said, "No." Not being newly diagnosed nor symptomatic, we have little to say or do with one another. Glad to pay it forward and let him spend more time with patients who need more of his time.


    Bottom line... you can see your doctor as much as possible and do as much or as little as possible and no one knows who will recur.


    I saw my internist this morning and he asked if I've moved on. I told him that since the radiologist told me I could resume annual imaging, I've moved on and away from cancer world. I also told him that while resuming annual imaging made me feel better, I know realistically speaking, diagnostic screening saves many more lives. But I have met a milestone and that's good enough for me. I don't care much anymore about recurrence percentages, I'm back to living my life and have little time to think about what might be ahead...

  • SusansGarden
    SusansGarden Member Posts: 754
    edited November 2013
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    No scans or tumor markers for me either. Granted I'm Stage I, as I assume most people are here since this is technically in the Stage I forum. Though I certainly don't discriminate against other stages posting here. We're only staged on what current science can see at the moment we are diagnosed.

  • AlaskaAngel
    AlaskaAngel Member Posts: 694
    edited November 2013
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    Again, to avoid misinforming or confusing or creating a non-informed bias among people, it is important to understand that it is speculative as to whether combining chemotherapy with trastuzumab for early stage HER2 positive bc is more effective, as effective, less effective, or more damaging. Some people feel or believe that the chemo "kills every possible circulating cancer cell that could create metastasis", but that has not been proven and chemotherapy does not kill stem cells that can create metastasis. Chemotherapy with trastuzumab is standard treatment for adjuvant HER2 positive disease because the clinical trials that led to the approval of the use of trastuzumab were done that way. It is unknown whether trastuzumab used alone for adjuvant use would be more effective, as effective, less effective, or more damaging. Oncs whose practices are tied to institutions tend to go with institution policy. Private practice oncs are less restricted and do sometimes prescribe trastuzumab without chemo for adjuvant use. It is generally considered acceptable to not include chemotherapy for patients whose other health conditions would not allow them to do well with chemotherapy or the support drugs for it, but who can tolerate trastuzumab, or patients who are elderly and less able to tolerate chemotherapy or the support drugs for it well.

  • AlaskaAngel
    AlaskaAngel Member Posts: 694
    edited November 2013
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    Same here, VR.

    I stopped seeing an onc in 2006, 4 years after my dx and tx. I get an annual physical from my PCP/NP along with lab work. I get an annual markers and an annual bilateral mammo. and see my BS yearly and provide him with copies of my labs and mammo, who this year indicated that I am entering a high-risk period and has added annual bilateral MRI to my imaging. My markers remain normal and my imaging remains clear. In addition I am a participant in a clinical trial for early detection of ovarian cancer, and a trial for early detection of recurernce of breast cancer, and do blood draws for those along with an annual TVUS. All remain fine at 11 years out. I have had no trastuzumab, no taxane, no AI, and just 1 3/4 years of tamoxifen after CAFx6 and IMRT rads.

  • SusansGarden
    SusansGarden Member Posts: 754
    edited November 2013
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    I know a lot of us have "moved on"...but can we really say that if we are still on this forum after 2, 3+ years? There is obviously something that brings us back here. I think I am a pretty positive person and generally feel I don't worry about what is beyond my control..but why am I still here? I obviously became very interested in this subject upon diagnosis and like to soak up as much information as I can. But if I'm being honest, I suppose there is that little nagging bit. It notice it surfacing when I go in for my MO appts. "I'm fine, I'm healthy, I'm doing great. I'm early Stage 1, and don't have cancer anymore. I didn't even have chemo!"..but every 6 mos I'm sitting in an office surrounded by cancer literature. I see the the people getting chemo down the hall as I walk to the examining room. The nurse is instructed to ask me if I'm in any pain. They still want to see me every 6 months. So it sometimes hits me...shit....I had CANCER. This wasn't a sinus infection I got over. They see me this often and for this long because people like ME do recur. It can happen. And maybe in a small moment it does freak me out. I think this is part of the reason I don't want to do Tamoxifen after my 5 years is up. I just want to be done. I feel like I want to frequent these boards to be current on info but sometimes it does suck me in a little. Anybody else feel this way?

  • AlaskaAngel
    AlaskaAngel Member Posts: 694
    edited November 2013
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    Yes kayb. It is quite understandable that assumptions sometimes are made about it, but that is the best way to say it.

  • AlaskaAngel
    AlaskaAngel Member Posts: 694
    edited November 2013
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    Speaking solely for myself,  I am here because the whole experience was so confusing, so poorly explained, and so many things about it were inaccurate. And I can truthfully say that I have never worried about cancer but have worried a great deal about treatment. I do think that those who have not done chemotherapy tend to question that decision whether questioning it in their case has genuine merit or not, just because chemotherapy is such an extreme treatment and because we still don't have a cure for cancer.

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited November 2013
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    Susan...I have moved on. I just enjoy the friendships I made here AND I hang around to especially help mucinous breast cancer newbies. When I was diagnosed, there was no one place to find the little research there was on mucinous bc. So I hang around helping those sisters and I help the mucinous bc researchers at Sloan Kettering. Emotionally, I have moved past cancer. Seeing the word "oncology" doesn't make me want to vomit any more.

  • ruthbru
    ruthbru Member Posts: 47,237
    edited November 2013
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    I think you do have to self-monitor or you can get into some pretty negative threads that aren't conducive for one's mental health as far as 'moving on' goes (or in any other way). I mostly stay on the 'fun' threads; games, Book Lovers, exercise, etc. because I have met some neat ladies from all over the country who have similar interests as me & whose company I enjoy. I will wander into some other threads if I think I can be helpful. I feel I have moved on because I am comfortable with my treatment choices & now whatever happens....happens. Either I never have a recurrence (knock on wood), in which case, I would have wasted a lot of time worrying over nothing. Or I do, in which case, I better be out there doing all the things I want to do NOW! (Which, really, we should all be doing either way.)

    * lago, a seafood restaurant at Cape Cod would work for me too Happy

  • farmerlucy
    farmerlucy Member Posts: 596
    edited November 2013
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    I too have wondered if I have moved on since I am addicted to this site! I have to say I really enjoy learning and the fellowship with those who really understand is awesome. Also I want to know everything I can for the at-risk ladies in my life. I feel so strongly now about paying it forward.

    I love going to my onc appts. I really feel well cared for. I don't care how long I have to wait or how short the appointment is. I look around and see others who need her time much more than I do.

    I feel like you ladies. I've done what I can, I don't worry about recurrance. In fact I'm glad I don't get scans or blood work. I don't want to know. I just want to enjoy my life. However cancer will always be a part of it.

    At this point I feel like the "grim reaper" only gets one bite at the apple to terrorize me. He had his shot when I was diagnosed. Hopefully I'll never allow myself that terror again regardless of what happens.

  • claire_in_seattle
    claire_in_seattle Member Posts: 2,793
    edited November 2013
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    Kay, I would say the same is true for me including working for a cancer support nonprofit. I also feel a need to give back, especially encouraging women to exercise which I think is essential for a complete recovery.


    One thing I find particularly heartening is the women who have gone on to live MUCH BETTER lives than prior to diagnosis. We do share the bond of having had cancer, but we also share the bond of "better than ever".


    Back to the topic.....that is why we go through the treatment: to greatly reduce the odds of this happening.


    As for what's keeping me up at night???? Making sure that I bring in enough income to fund my lifestyle. That, and the odd work-related crisis. I am way too busy with my life and work to be waiting for the other shoe to drop. - Claire

  • claire_in_seattle
    claire_in_seattle Member Posts: 2,793
    edited November 2013
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    Susan......just saw your last add to your post. The media thrive on sensationalism which may or may not tell the whole story. This is what keeps them in business, but what they report is not always what it seems.


    I will give you an example.


    I think it was early 2010 (when I was doing chemo) that I learned that my bank was "cutting 30,000 of its workforce". I was of course worried as I have been on both sides of a downsizing. Not fun.


    So it was with great concern that I ventured in to talk to people there. THE REAL STORY???? They were divesting of some of their divisions which were going to other financial institutions. The jobs were going with the divisions.


    So in no way a net loss of 30,000 jobs....a very different story even if technically true.

  • lago
    lago Member Posts: 11,653
    edited November 2013
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    Susan I really don't worry about recurrence. I do want to keep up on things though. I too volunteer (ACS) and just finished a 6 month gig with ACS so the knowledge is important. Actually applied for another full-time gig. What I do worry about is my friends with mets. I do want to understand their challenge as best I can. I'm also here for others. Yeah I still talk to people off list. I also think it helps for those just diagnosed or going through treatment to hear from folks like us that are further out and doing fine.


    But as you know once I start working I'm not here as much.

  • SelenaWolf
    SelenaWolf Member Posts: 231
    edited November 2013
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    It's the randomness of cancer that scares the bejaysus out of us.  Much of the time there's no rhyme or reason why someone develops it.  I mean, how many active, non-smoking, non-drinking individuals with an excellent diet and no family history develop breast cancer?  A great many.  And, yet, one of my grandmothers smoked like a chimney and drank like a fish, and died, perfectly healthy, at the ripe old age of 97.  Coupled with that is the fact that, for many of us, follow-up is basically waiting to see if we relapse.  So, just as you're starting to become accepting of the fact that - damn! - I had cancer, you have to get your head around the fact that "follow-up monitoring" is essentially just a waiting game no matter what your stage.

    I'm still on the boards - 2 years out - because I like to keep up on the clinical trial and news threads.  There's a few people here that I like and want to keep in contact with, but I also want to reach out to others who are just starting to go through the whole ugly breast cancer process and are scared, terrified, confused and overwhelmed.  I know how lonely that feeling is.  And I like to let the newbies know that, yes, there is life after breast cancer and it is a GOOD life; that as dark as it seems now, there is a light at the end of the tunnel.  I'm not afraid any more of recurrence - what will be, will be.  It's taken me a long time to reach this point, but it's a damn sight more comfortable, let me tell you!
     

  • SusansGarden
    SusansGarden Member Posts: 754
    edited November 2013
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    I also think it is beneficial for newly diagnosed to see us "old timers" posting and doing fine. Not many of us stick around for whatever reason, but mostly because they truly have moved on (from the BC forum at least). I do believe that I find out the most current information about BC and related issues on these forums. We are our own best advocates. Not that I don't trust my MO, but I've actually corrected him about things before. He is human and sees umpteen patients in between visits with me. For example, he mistakenly told me that Tamoxifen helped my bones until I reminded him that I was pre-meno and it's actually the opposite. He stood corrected and was thankful I caught it.....Being informed also helps me to educate friends and other people I meet that are newly diagnosed. I still find the subject interesting because of my personal experience, but like ruthbro said, I probably need to edit which threads I open. It's hard not to think of your mortality when someone like 1Athena1 suddenly develops mets and is gone way too soon.


    I'm glad you guys that still hang out here feel you have moved on. I'm probably 90% there. I'm sure I'm not alone. I kinda go through ups and downs between 90 and 99% moving on I think. I think I'm in a little bit of a funk today. I was closer to the 99% until I had an ovarian cancer scare this summer and it's kind of brought it back to the surface a bit since I needed to start researching again to decide my course of action and what consequences I could be facing due to my choices of "treatment" and how it related to having had BC. It's not that I'm really "worried" about recurring or even dying. I'm not quite sure how to articulate it. Maybe the surgical menopause is finally kicking in and messing with me! I'm working on getting back to the 99% and know I'll get there again. :)

  • Blessings2011
    Blessings2011 Member Posts: 1,801
    edited November 2013
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    Pre-BMX, my dx was multifocal DCIS in the left breast, with multifocal IDC in one of the DCIS areas. At biopsy, the IDC tumors measured half a millimeter, and 1.5 millimeters. I chose BMX for numerous reasons, including family history, extremely fibrocystic dense breast tissue, the Radiologist's uneasiness as to the right breast being clear, and finally, symmetry for reconstruction purposes.


    It was totally the right decision for me, and none of it depended on being "cured" or avoiding chemo or rads just because both breasts were gone. I knew that the final pathology report could reveal all sorts of nasty surprises, and I was prepared for any eventuality.


    However, what I didn't anticipate was that the final pathology report would find NO EVIDENCE of IDC, even though it had been substantiated by biopsy. Apparently, the two ultrasound-guided core needle biopsies had gotten all the invasive cancer.


    The MO said my chance of recurrence was less than 1%. (She's a brilliant and dedicated researcher as well as being an awesome MD, so I trust that she based this on credible data.)


    But since it wasn't ZERO, my MO insisted on AI therapy for five years. I gave her some mumbled answer about CancerMath and how I interpreted that my life span would increase by 8 months on an AI. Her response: "Would you rather have those 8 months WITH or WITHOUT a recurrence?"


    I never had any other kind of testing except for my SNB at time of BMX. No BRCA, no Oncotype, and no followup testing such as Tumor Markers, scans, etc. My only follow-up consists of the MO doing a physical breast exam when I see her, which is pretty funny, since I never had a lump in the first place.


    I don't worry about recurrence. I figure the cancer was removed from my body in December 2011, and I am keeping it from coming back by swallowing that little brown pill every day for the next four years. I don't want to throw away my precious days by focusing on the what-ifs. If I do have a recurrence down the line, I'll deal with it then. I know there are no guarantees with BC. But today, I do what I can to stay healthy, and let the rest go.


    I stay here on BCO because I've met so many awesome women here, and I appreciate all the information, support, and yes - laughs - that I have gotten here. And sometimes it's nice to help the newbies who are desperate for information.


    I want to be aware of the statistics, because I have had breast cancer. I want to be informed. I am interested in new developments, and it seems that BCO is the first place I hear about them.


    So THANK YOU to everyone who continues to contribute and participate here!!!

  • SusansGarden
    SusansGarden Member Posts: 754
    edited November 2013
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    I just noticed that a couple of you had 10,000+ and 20,000+ posts! Wow! Is that from participating in threads that become ongoing friendship group threads? I never got into any of those because I didn't have a whole lot of "treatment" groups to join. And many of those threads, like the "bottle of Tamoxifen" thread, are way too active for me to keep up with. I did enjoy my "small boobs" thread though while it lasted. Lago was on that one. :)

  • dogsandjogs
    dogsandjogs Member Posts: 677
    edited November 2013
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    I'm actually using these threads instead of my oncologist!. I resented the fact that his breast exams were so perfunctory - only a huge mass would have been noticed - and each 5 minute visit cost $165 (for which I pay 20 percent, but still. Not to mention time out of my life (at least 1 1/2 hours each time). He was only going to order bloodwork twice a year.


    So when I gave up on Aromasin I decided I really didn't need him. So my internist does the bloodwork and my cardiologist's NP is also very helpful. I can order my mammograms myself.


    One less doctor is such a relief. I know some of you feel just the opposite, but I do not get comfort from seeing doctors. So I go on these threads instead which is much more enjoyable.

  • lago
    lago Member Posts: 11,653
    edited November 2013
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    SusansGarden I should visit the small boob thread but remember my PS interpretation of a little bigger than a small 34B make me a full 34D. I'm a big girl now Loopy I posted quite a bit the first 1.5-2 years. Post ho back then.

  • minustwo
    minustwo Member Posts: 13,189
    edited November 2013
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    Susan; I LOVED the small boob thread the first year after my first diagnosis. However like Lago, apparently my PS had a different interpretation of "small". I would still like "athletic" breasts one day.


    I too had mostly on moved to friendship threads - Book Lover's, So What's for Dinner etc. when I logged on. I did stay active on the stop smoking thread since I have personal experience how hard that hurdle was. My recurrence was a total shock and I've been thankful all over again for this site as I make my way through chemo, more surgery, more chemo, rads, etc. That's a big THANK YOU to every one of you who take the time share your experiences & knowledge.

  • ruthbru
    ruthbru Member Posts: 47,237
    edited November 2013
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    Get hooked on the Humor & Games thread, and you too will have way too many posts! I also post on the 'Lets Post Our Daily Exercise' thread every day. A number of us from that thread have gotten to be such great friends that we have a get together once a year. It has ranged from 3 of us (in Chicago, where we had dinner with lago and some of her Illinois gang), up to 7 of us last year in D.C. Odd to say, but BCO has become a fun and enriching part of my life.

  • SusansGarden
    SusansGarden Member Posts: 754
    edited November 2013
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    Lago, I believe the small boob thread is dead. It had a nice long run. ;) I'm officially a "D" too but, remember, most people are sized wrong and would say I look a "B". I've still had people ask me if I'm done with reconstruction in the context of they can't believe I wouldn't have chosen to go bigger than this. :) .....but I digress.


    Dogsanddogs....I tend to agree with you about this forum being more informative than my oncologist! His visits with me are short and he doesn't have time to philosophize with me over treatment discussions as in depth as I get here. And I don't blame him. I'm such low risk. He often says...well, if you were a higher stage I would be more worried about...blah blah blah. I did push him about when I could "graduate" and he thought after my next 6 month follow up we could go to yearly visits. It is probably a waste of time/money but I like him. I would assume I'll stop seeing him after I'm done with Tamoxifen? Even though ER+ cancers can recur 10+ years down the road, I can't imagine I'd see him yearly for decades?


    I really do appreciate the discussion here. It's interesting to see different mindsets and opinions. We all have one thing in common by being given a ticket on this BC train, but our personal rides and how we perceive/experience can be so different. It's interesting to me. :)

  • SusansGarden
    SusansGarden Member Posts: 754
    edited November 2013
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    I remember you now, Minustwo! Sucks about the recurrence. So you were presumably under close surveillance (due to your BC history) and they still didn't catch the recurrence until it was Stage IIIB? That's not encouraging to the efficacy of "close follow up" after BC now, is it? Sorry you have to go through treatment again. I did get my "athletic boobs"....it's just the rest of my body that needs to catch up now. ;)


    ruthbru ~ I think it's great that so many women friendships have evolved from this board into "real life". I was in a Seattle group from here and went a couple times. Claire was there once. :) But it pretty much pittered out as most of them aren't very active on this forum.

  • ruthbru
    ruthbru Member Posts: 47,237
    edited November 2013
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    Come over to the exercise ladies, we'll help you 'catch up' with your boobs & maybe get you on a vacation as well Winking.

  • SusansGarden
    SusansGarden Member Posts: 754
    edited November 2013
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    I might have to check that out, ruthbru! I took up running in Feb and was a little sidelined with the hysterectomy this summer. I'm just getting back to being more consistent. And it would be fun to travel to meet up with some ladies!