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I Did It...No Further Conventional Treatment

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124

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  • jojo68
    jojo68 Member Posts: 336
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    I had 7 nodes as well, which is why I don't know why I would be a less stage than u?

  • jojo68
    jojo68 Member Posts: 336
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    They also did not recommend chemo b4 surgery for me....every place is so different.

  • Momine
    Momine Member Posts: 2,845
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    Jojo, I just explained. It has to do with the staging of the actual tumor. I had skin involvement, which makes my tumor a T4 instead of a T3, as yours probably was (you can see it on your path report). The pre-surgery chemo was to make sure we could get clean margins in the surgery and to try to stop the cancer in its tracks.

  • jojo68
    jojo68 Member Posts: 336
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    Oops, sorry...I guess I don't know what skin  involvement meant...was thinking it was lymph node spread!Thanks for your patience and clarification!

  • jojo68
    jojo68 Member Posts: 336
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    Oops...sorry I was thinking nodal involvement...How do they tell skin involvement?

  • Momine
    Momine Member Posts: 2,845
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    Jojo, you can see the skin involvement. On me it looked sort of like a stretch mark. I had not noticed because it was towards the armpit. When I found the tumor, I also found the "stretch mark."

  • SelenaWolf
    SelenaWolf Member Posts: 231
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    momine... does breast tethering i.e., a dimple or a crease count as skin involvement?  Or is that something separate?  Or is that what you are talking about?

  • jojo68
    jojo68 Member Posts: 336
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    Hmmm, interesting.  When I woud raise my arm the underneath part of the breast would have an indentation...would that be the same thing?  They never said anything about it.  Also, if that is skin involvement...wouldn't that be gone with the mastectomy anyways/?  I am not understanding how that can be borderline stage 4?

  • Momine
    Momine Member Posts: 2,845
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    Selena, I am really not sure. I only know how it looked on me and what my docs say.


    Jojo, it is not stage 4, the staging system has 3 elements: tumor, T, nodes, N, and mets, M. Each one is assigned a number based on what is found and then the 3 elements together add up to your stage.


    My stage, 3B, consists of T4, N2 and M0.


    If you check your pathology report from the mastectomy, it will have somewhere the TNM stats.

  • Momine
    Momine Member Posts: 2,845
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    Jojo, here is a very thorough staging guide with illustrations: http://www.cancer.net/cancer-types/breast-cancer/staging-illustrations





  • Mardibra
    Mardibra Member Posts: 194
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    When they do the pathology on your MX, they check the skin as well as the tumor. My path report actually said no skin involvement. Pre surgery, if I raised my arms above my head I could see the dimpling where the tumor was pulling on the skin. So, dimpling is not necessarily tied to skin involvement...at least not for me.

  • RosesToeses
    RosesToeses Member Posts: 244
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    Hi jojo, just sticking my nose in to say that the staging is done on the largest tumor, not the combined size (I'm also multifocal/multiple tumors). From what you've written, sounds like you're IIIa like I am.


    I'm also one who's surprised by the low number you were given for chemo and rads. For me chemo alone gave me as 32% improvement in odds (absolute, not relative). Tamoxifen another 18%. There's a website called "cancermath.net" that gives estimates for that sort of thing. I wouldn't trust it over an oncologist, but it might help give you some more info to start with?


    (Disclaimer: I'm not doing anything alternative, but I figured I was safe if I stuck with staging)


    PS, Momine, great site!


    (edited for a spelling error)

  • Momine
    Momine Member Posts: 2,845
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    Mardi, I checked a bit, and simple dimpling can be caused by some ligaments that contract because of the tumor, i.e. not skin involvement. In my case, both docs were quite convinced of the skin involvement, and it looked more like a fairly long stretch mark than like dimpling. I admit I am not in the mood to dig out the path, but I recently confirmed with my surgeon that the tumor was a T4.

  • Momine
    Momine Member Posts: 2,845
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    Roses, something similar for me with the stats.

  • Rdrunner
    Rdrunner Member Posts: 67
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    To answer the question about stomach mets.. because my grandmother had breast cancer (we dont know if idc or ilc) that spread to stomach i am being followed by internist/gastro.. he is checking h pylori levels as high levels is increase risk for primary stomach cancer but i will be having both colonoscopy and endoscopy in the next few weeks for sure. Scans for me in terms of follow up.. i have had several chest ct's for a sarcoidosis flare up that have also served as a cancer check, i have had a few u/s of liver at dx and then with sarcoidosis flare up . And pelvic ultrasounds as had problems prior to BC.


    I also want to mention the radiation for a one time CT or x ray is minimal.. you are exposed to more radiation on an airplane.. it becomes a problem accumulativly. Im curious also re the stat that catching a met early does not increase survival time ? Anyone have a good study for this.

  • Momine
    Momine Member Posts: 2,845
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    Rdrunner, this question has been bugging me too, so I went and asked Mr. Google. Among other things I found this, from 2012:


    "There is no proven value of routine ‘screening’ tests for metastatic disease in asymptomatic early breast cancer patients. However, the available data are from a time when neither biological therapy nor effective (in terms of local control) and less invasive (in terms of quality of life and side-effects) locoregional therapeutic techniques, such as radiosurgery for central nervous system (CNS) metastases or radiofrequency ablation for liver metastases, were available. In addition, new detection techniques are now available, such as MRI, PET-scan, PET–CT and others, that may allow the detection of very early metastatic disease. Therefore, new studies are needed to evaluate the role of early diagnosis of metastatic disease in the current context." http://annonc.oxfordjournals.org/content/23/suppl_7/vii11.full





  • Momine
    Momine Member Posts: 2,845
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    Jojo, a paper on stomach mets in breast cancer. The paper also says that such mets are very rare. When they do happen, the original cancer is usually lobular, but even so it is a rare event.


    http://ar.iiarjournals.org/content/29/11/4759.long

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,854
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    Having a single bone met, which was discovered by accident and was not symptomatic, I clearly have a vested interest in this issue. At the time of dx, I switched mo's and was given some info on early detection of limited mets by my (then) new mo. I will try to find that info and post it if found. I will say, it puts me in an unusual position. I am stage IV but have never had chemo or breast rads (had bmx 6 weeks before discovery of met). I have remained NED for a bit over 2 years on Arimidex and rads x15 to the femur met. What does this mean for surviving longer? Frankly, I think that no one knows. Emotionally, it does make me feel better about my situation, but I am not so naive to believe that my life won't be shorter than I'd hoped.

  • Momine
    Momine Member Posts: 2,845
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    Brnx, I don't know what it means either, but I would be very interested in what your MO's take on this is.


    I must also say that I take it for granted that BC will shorten my life, although I remain stage 3 and NED so far.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,854
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    Just looking at my dx line. It says met is to my hip. I swear it was read femur, which is where my met actually was (yes, was, it has been necrotic since rads). Must go in and correct that.

  • Rdrunner
    Rdrunner Member Posts: 67
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    Thank you for posting that study Momine.. i have to have a conversation with MO about this topic.. its a sore point with me and hell if I can have more time that is quality with my kids then heck i want it and she can scan me from head to toe lol. When I was first dx my bone scan showed extra uptake at the hip but radiologist said most likely arthritis.. X ray shows nothing. I do have arthritis in other areas and being a runner all my life then the chances are high its in hips too but my other hip is fine. This hip has been painful now to the point of waking me up. They did another x ray in July and it showed nothing. I am having bone density soon but that wont show mets so not sure if i should push the hip issue or not. Also yes yes I forgot to mention that stomach mets are rare.. thanks for that too Momine

  • Sunny_Day
    Sunny_Day Member Posts: 1
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    I'm new to this forum.  But thought I'd say congrats and best of luck.  I had 5 rounds AC chemo in 2011 followed by a lumpectomy.  Margins were not clear.  Onco wanted to do mastectomy, and more chemo and radiation, and thought that without it I'd be metastasized by Jan 2012 (not true yeaa).  At this point, I was getting suspicious of treatment that made me feel so bad, and I refused further treatment. I also thought that radiation on my left breast was awfully close to my heart, and didn't trust that.  I began Budwig  protocol in December 2011, and also took a trek down to the Burzinski clinic. I've been doing Acupuncture all along.  I did have various tests in 2012, and recently had a visit with the onco for blood test and cancer marker, which was good. I'm still on Budwig and acupuncture.  Just saying, it is indeed possible, and for me, preferable - if I had to do it again, would do less of the traditional stuff and more of the alternatives. It's worked well for me. 

  • GlobalGirlyGirl
    GlobalGirlyGirl Member Posts: 77
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    Welcome Sunny_Day and thank you!! SO glad they were wrong about the mets and that alternatives are working out well for you!

  • wellawarenow
    wellawarenow Member Posts: 6
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    Your link to the cancer.org website was not working. However, the link I provided back when I posted this info didn't work either. As for me not being a cancer victim, that depends on how you look at it. In my case, yes it was my wife with the IDC double mastectomy and post-surgery hormone therapy. I have learned a lot about breast cancer, including how to deal with my wife who lost all of what she once was to me and everyone that cares. Although it has taken 15 months now to finally get her to come down from the trauma of it all, we are getting along better than we ever have. I give my wife all the space she needs, never try to cause any issues with her and when her side effects from taking the Arimidex occur, I keep my distance so her anger does not vent on me.


    As for the IAT information, I located the recent website at Immune Augmentative Therapy and inquired about their treatment. As for my wife wanting to actually trust this practice, that will be another day and probably a $15,000 cost we don't have or care to risk. Looking at the way big drug corps control the medical world as we know of it, who can you trust anyway? It is.... what it is!

  • glassdr2
    glassdr2 Member Posts: 1
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    I like you didn't want to do radiation or pills. It took me some time to think and read about it to decide it wasn't for me. Do I regret my decision, no. With the help of many posts I have read and seeing all the side affect that the meds. have it didn't take me long to decide what I wanted to do. I am lucky that my family backs me with my decision. I don't have children to worry about leaving. God luck and take care.

  • GlobalGirlyGirl
    GlobalGirlyGirl Member Posts: 77
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    Hey glassdr2 - I'm glad that your family backs your decision. Mine do, too. Luckies to you, and please take care as well. I hope you have a very Happy New Year!

  • Delvzy
    Delvzy Member Posts: 454
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    how are you going with your Chinese medicine

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,854
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    This thread has been dormant for five years and the op has not signed in since 2014. Some of the other posters are still active on bco.

  • Amyadipose
    Amyadipose Member Posts: 13
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    stick to your guns. If most everyone lived through conventional treatment there would be little debate. If every other person didn't have a tragic story about a loved ones rapid deterioration after starting treatment there would be no debate. What are the odds that a person gets a routine check up, cancer found, dead in 6 months? It happens too often. They always say we caught it too late. On occasion, sure. If you're having symptoms, likely. But had they not gone in at all they may live 10 years or more without knowing they had it at all! I felt a lump. If they found this 5 years ago would I be alive right now? I feel like its damned if you do, damned if you don't. Like i feel it's an 80/20 chance you'll survive treatment. I just want honesty. If the doctor said outright, "this might kill you, but it might save you, either way you're fucked if you don't do something" I'd totally respect that.

  • alicebastable
    alicebastable Member Posts: 1,945
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    The ones who die in a short time usually have IBC that isn't caught in time for treatments to be effective. If caught early, it is survivable, as you will see if you search these threads.