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How can someone jump from 1A to 4 quickly?

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  • labelle
    labelle Member Posts: 134

    All the studies that look at stage only do not seem to consider what we now know about grade and tests like the oncotype that have been shown to be predictive of recurrence.

    For example, if you take two women with a small node negative hormone positive tumor and one has an oncotype score of 8 and the other an oncotype score of 36, they have very different chances of recurrence even though they have the same stage of BC.

    These big studies while interesting, cannot IMO tell us much about our own personal chances of recurrence. For that I think we need to talk to our OCs who know our test scores and the treatments we've done and are doing. As we move into the age of personalized medicine, stats compiled based on stage only do not seem to be the best source of information reguarding recurrence rates for us as individuals.

  • barbe1958
    barbe1958 Member Posts: 7,605

    Great points, Isabelle, you said it much more succinctly than I did!

    Hopeful, if I was on Tamoxifen or, in my case, Arimidex and then recurred, they are not going to just keep me on the same medication now, are they?

  • coffeelatte
    coffeelatte Member Posts: 109

    I like what Iabelle just wrote This is a very interesting thread and I admire the participants and all the information you have brought to light. There is so much more to breast cancer than I ever thought, it is so terrifying to me. Here I sit as a "Stage 0" yet I have not been feeling well the past three months so a CAT Scan was done on Monday, July 18, to look at the abdomen and pelvis area because I am having a lot of digestive issues (new). All looks good EXCEPT they see a 5mm spot (lesion) in the right lobe of the liver. My primary care physician contacted me Monday night to inform me of the finding and to tell me the radiologist is recommending a MRI of the liver to determine if this is a metastasis of the breast cancer or a benign finding. I just happened to have a return visit to my gastroenterologist yesterday so I had the opportunity to as him what he thought. He said do not delay in getting the MRI. He strongly urged me to do it soon. So if DCIS can never spread, and by definition it can not, then I have to think there may always be the possibility of a few cancer cells that are invasive, even if not caught on the pathology exam? Because three doctors, all from different specialties, seem to think that my "be happy your cured it was stage 0" cancer can sure spread just like any other stage. So much yet for them to learn I suppose. Sure is scary.

  • muska
    muska Member Posts: 224
    Hi coffeelatte, have you ever had abdomen CAT Scan before? Abdomen ultrasound or other scan they could compare the most recent finding to?
    Benign liver lesions are quite common.
  • mike3121
    mike3121 Member Posts: 280

    I don't like to post here much as this site is for you ladies. My wife's oncologist says my wife's cancer history is so complex he can't even stage her.

    My wife refuses to use the internet, well except for Amazon and Ebay.

    My wife, back in Dec of 2012 was diagnosed with Stage 4 ER+ PR+ HER2-breast cancer. One node and a small spot on the spine. After 3 infusions of AC she was clean except for the 6 cm tumor in her breast. The oncologist said since the cancer was responding well to estrogen blocker (aromasin) it was best to leave it be. Ops forgot to mention in the midst of all this cancer stuff she had to have removed a grapefruit sized and very painful non-cancerous ovarian cyst.

    A little over a year later, Nov 2014, the cancer morphed and went crazy. She had a radical mastectomy and breast removal. A biopsy showed it to be ER+ and the oncologist prescribed tamoxifen. 19 lymph nodes were removed and 9 of the 19 had triple negative Metaplastic keratinized squamous carcinoma (Dr feels this cancer originated in lymph nodes). A PET scan done after the surgery showed some cancer still in her armpit, probably spill over from the nodes. She has two cancers, one ER+ PR+ HER2- and another triple negative. She went back on A-C (lifetime amount), no Taxol as she almost died from it earlier. Almost died from NeuLasta too. Also 7 weeks of radiation.

    After all that she had to have major surgery to remove a tumor from her kidney. Eighty five percent were cancerous but hers was benign. Happy dance, she's NED and back on tamoxifen (with very little side effects).

    Prayers and fingers crossed.

  • nbnotes
    nbnotes Member Posts: 338

    KathyL624 - They did mammoprint, and it came back that chemo was needed. Initially, I was going to do AC followed by Taxol, but finding it in the liver, MO decided to leave off the T portion.

  • hopeful82014
    hopeful82014 Member Posts: 887

    "Hopeful, if I was on Tamoxifen or, in my case, Arimidex and then recurred, they are not going to just keep me on the same medication now, are they?


    Barb, IF you had been on Tamoxifen and recurred, it's quite possible that you might have been put on an AI since the AIs work differently and are generally more efficacious. You might also have been started on an AI with another drug. If you were on an AI, another drug might have been added (such as, for example, Ibrance) or you might have been switched to faslodex. Or you might have done IV chemo, then been switched to an AI.

  • barbe1958
    barbe1958 Member Posts: 7,605

    coffeelatte, I'm going through what you are right now. It is very scary and someone who has never had cancer before doesn't "get it" that we get scared. They tell us to think positive and everything will be okay. I pray for a good result for you, but I will say, that a lot of livers do have fatty deposits, that's why muska was asking. Please let us know here how you are doing. We care.

    mike, your wife has gone through hell and I pray she's on the way back! Prayers going her way as well.

    nbnotes, with a grade 3 tumour, I'm not surprised that chemo was recommended. You prove a case that grade was more important than stage at this point in time. Good luck, sweetie.


  • coffeelatte
    coffeelatte Member Posts: 109

    Muska, I had a CAT scan back in 2005 at a different hospital. I mentioned this to my primary care physician and she said because they did not use IV contrast (they only used the drink portion) it most likely would not show a 5mm lesion in (or on) the liver from 10 years ago. I sure hope you are right. The gastroenterologist scared the heck out of me. He was all serious and gloom and doom.

    Barbe1958, thanks for the kind words. I always come to these boards for companionship. Even if I don't post, just reading what others have written feels like I have a private world of friends and support who understand the anxiety a cancer sufferer is going through at any given moment. My husband is very worried and fears the worst as well. He is usually so optimistic, but he has not been this time. I think it is because I have been very nauseous and losing weight, which I have never had before. But I did test positive for some other gastro issues (fructose malabsorption and SIBO) so I am hoping these are the reasons for the weight loss. I have the MRI scheduled for August 9. I sure hope you are ok. You have been through a lot. We all have.

  • lisey
    lisey Member Posts: 300

    I just wanted to add.. that soon.. I need to leave these damn boards. I had a nightmare last night I had brain mets and had to cancel my weekend plans and go to hospice... I'm seriously on the boards too much as it's infecting my sleep now.

  • meow13
    meow13 Member Posts: 1,363

    Lisey, you are going to be ok. Promise you will. There may be good days and others not so good but you will be ok.

  • hanley50
    hanley50 Member Posts: 78

    Lisey - LOL! I've been following a couple of the threads you have started in the short time you have been on the boards...you have sparked some very interesting conversations! Don't go anywhere! (But I do hope you get a good nights sleep with no more crazy nightmares!)

    Hug

    Maryann

  • lisey
    lisey Member Posts: 300

    Ah thanks Meow and Hanley, I do appreciate the support. I want to stick around until I settle into some type of complacency after the tests come back. I really want to show what a blue print test looks like and give my results. I really hope I'm luminal A, but all the signs point to B... which does freak me out.

    I'm so obsessed with all these puzzle pieces and I just need to stay off the Stage 4 boards. I read a horrifying story of a women whose breast exploded and all the material landed in her hair and on the ceiling. The calm way her husband described the scene was so shocking. I've been crying for that woman and her poor husband today... and she's in New Zealand!

  • coffeelatte
    coffeelatte Member Posts: 109

    Awe Lisey, I was so in your shoes three years ago when I was first diagnosed and for a good year afterwards. It is a very hard learning curve on the nerves for sure. I just looked back at your prior posts and realized I had missed how recent your diagnosis has been. I too enjoy your writing style and your posts and will continue to read them as long as you care to write. As with many, I am sure in time you will drop in once and a while to read and post because your focus will once again be filled with so many other things. I had to laugh when you said you need to stay off the Stage 4 boards. I use to read and follow them like they were a novel and at times I still do. The posts scared me but I could not stop reading them because I just had to know how the story was going to end and/or would this soon become my story. Like you, these posts brought out a lot of empathy and compassion for others and what they are going through. I think many of us suffer a little bit from post traumatic stress after such a huge life altering diagnosis. Be gentle on yourself. As time goes by, you will strike a balance and breast cancer won't be so in your thoughts and dreams 24/7. But it has to run its course and that takes a while. In the meantime, isn't it wonderful we have the people here who jump in to help and keep us company?

  • Lovinggrouches
    Lovinggrouches Member Posts: 346

    I never post much, but I follow this thread because I'm also stage one. I too am guilty of reading the stage four threads and didn't realize how much that ramps up my anxiety - so as of now I'm staying off of them! Lisey, I too enjoy reading your posts!!!!

  • TwoHobbies
    TwoHobbies Member Posts: 1,532

    Lisey, here's my recommendation. We can argue about the statistics but unless it's 0 and 100, it's meaningless to the individual. You have good statistics on your side. With your doctor, understand your tumor biology and decide on treatment. Do your treatment faithfully. Then become obsessed with your overall physical and mental health and happiness. Exercise, reduce your processed food, de-stress, enjoy friends and family, do things that make you happy. Assume you are cured but just don't forget your dr appointments. Think about all the BC survivors you know who are alive.

    Don't affect your mood by going to stage 4 and recurrence posts. They will be there if you need them but you don't need them now.

    The "public face" of breast cancer is how great things are today. Get your mammograms -all will be well. Those who have recurred know differently. Those who see their fellow sisters recur are equally resentful that their own fear and worry is not understood. In that respect we are all in this together, but I feel it's not beneficial to spend one more minute worrying about it than we already do.


  • pupmom
    pupmom Member Posts: 1,032

    You are looking at a website where primarily people with concerns post. What you see here does not reflect the real world. Try not to worry.

  • bluepearl
    bluepearl Member Posts: 133

    KathyL624....I didn't take tamoxifen first go around......but I sure do now the second go around. Lucky that #2 was so small!!! I sometimes wonder if tamoxifen would have killed it before it started to grow. Never know.

  • fleur-de-lis
    fleur-de-lis Member Posts: 13

    I think one big factor that is not being taken into consideration on this thread is the other co-mobidities that a cancer patient/survivor has can greatly affect their own, personal statistics.

    You have the odds/statistics based on your cancer stage, type, any "know" genetic mutations, familiar history. This are taken into the statistics discussed on this very thread.

    You then have toxic chemical exposures such as DES, infectious/ viral exposure loads that can "turn on" oncogenes, such as EBV,etc. Methylization defects, Cytochrome P450 issues, although the MO environment is now looking into how individuals metabolize Tamoxifen, chemo, etc.

    There are the rather questionable Environmental exposures that most women on the planet are dealing with, GMO's,External estrogen exposures, etc. Issues such as this are not often taken into consideration, although complimentary/ alternative practioners do delve into some of the above topics, but most of these doctors are expensive and are out of most insurance networks. A lot of women do not have the financial status to pursue such methods.

    Then you have other statistics, some of which are endocrine based (dysfunctional glucose metabolism, discussions of dysfunction thyroid, pituritary gland questions and issues) and immune health/status related ( auto- immune diseases of which the current biological treatments effectively lower your immune response, Mast Cell activation, and the opposite, immune deficiencies) This is just the tip of the iceberg.

    Why do you think that researchers are looking at Metformin for breast cancer patients, as most tumors are IGF-1 positive. Why do you think researchers are working with Immunotherapy protocols?

    There are many things, beside those discussed on this thread that could "affect individual reasons" why certain women progress to stage 4 and others do not...many of which are probably " unknowns" at this time

  • barbe1958
    barbe1958 Member Posts: 7,605

    I was on Metformin for diabetes and still progressed...

  • fleur-de-lis
    fleur-de-lis Member Posts: 13

    I know, Barbe...I have several friends that have progressed in my social circle, even when using SERMS and AI's....sadly. They militantly follow their protocols, too. I like to believe that researchers are on to something regarding testing for genetic/ metabolic variances in those who use SERMS and AI's. To discover those who the therapy works best for, and to discover more reasons why it fails for others.

    As an aside....I cannot tell you how much Metformin has helped me regarding controlling reactive Hypoglycemia. This condition can be as damaging to us as type 2 Diabetes. I followed a verystrict diet. A small dose really helps me from dealing with the roller coaster BG levels, regardless of diet.

    It is just one piece of the puzzle, at least for meI did not pick my mother carefully ( well, that's what the genetist " kiddingly" told me-LOL!) and have several genetic health issues.I have to do the best that I can to deal with the hand that life dealt me. If it was not for the advances of modern medicine, I would have passed on many years ago. Too many dangerous, and unusual infections and hospitalizations prior to the DX of an immune deficiency..

  • lisey
    lisey Member Posts: 300

    I took the Kailos Genetics Complete RX test ($149).. and found out I'm a double recessive Met/Met COMT enzyme variant. COMT is a garbage man protein that cleans up trash and chemicals in our bodies and brains, such as Dopamine and Estrogen. This means I am doubley deficient in this protein and have a 24/7 flood of dopamine in my cerebral cortex (a cool thing) but also excess Bad Estrogen from the environment (a bad thing). Both of my cancers were estrogen based.. so I bet my protein genetics have a lot to do with that. I'm also an ultra-rapid metabolizer of Tamoxifen (a good thing).

    Once science is able to look at our bodies in purely custom ways, and design custom medicine for each one of us based on our genetics, we'll be much better off. In the meantime, I recommend everyone get their own personalized testing outside of insurance if necessary.

  • jackster51
    jackster51 Member Posts: 139

    I also think many Stage 4 cancers are missed.. My sister was recently diagnosed Stage 2, had double MX, Oncotype score of 11 so no chemo. 4 months later was experiencing bad pain in abdomen... turned out to be her gallbladder. But during testing for that, they found cancer on her spine. So she was stage 4 from the get go, but mis diagnosed.. I think that must happen quite a bit.

  • KathyL624
    KathyL624 Member Posts: 47

    God, that is my worst fear. They don't run any scans on many of us Stage 1 and Stage 2 and what if something is already there?

  • fleur-de-lis
    fleur-de-lis Member Posts: 13

    This is something that concerns me as I await testing of a mixed neoplastic Phyllodes...the actual Phyllodes tissue is completely benign, but an area of LCIS was found deep in the tumor...it was sent out to two other centers, Mayo and University of Michigan ( as Phyllodes are being heavily studied there currently) to decide if it is LCIS or ILC...two paths at the major center center where it was removed are in debate. Regardless, it was caught early, and either way, I will pursue a BMX.

    It is extremely rare...but due to even " said" benign Phyllodes tumors having been found to potentially send out mets due to their Sarcoma like growth patterns, and this being my second Phyllodes, and also having a Hemioanginoma ( another type of sarcoma like growth) removed a few months back....they are running a PET scan on me.

    I do wonder if it is insurance policy's standing in the way of the MO ordering the tests? Just because the modes are negative does not always mean something else isn'tbrewing elsewhere.?

    Regarding the scans missing metastasis, you just have to "shake your head in disbelief". I often wonder if we all should pull our own tapes/scans, etc. and always get a second opinion. But insurance might get in the way of that methodology.

    My mother was mis-DXed with stage 3 Ovarian Cancer, the first dose of chemo sent her into a death spiral...the hospice nurse told us that she was not staged correctly, and was most likely a stage 5 at DX. and should have never been treated...just sent home to live out her days in "peace".

  • KBeee
    KBeee Member Posts: 695

    I think there are such mixed messages on scans and such.

    Them: "We don't do scans because studies show they do not make a difference in overall survival or how long you survive."

    Them: "Just make sure you call if you have pain for more than 2 weeks, cough, etc"

    Me" "Why should I call and not wait until my next appointment?"

    Them: "So we can diagnose it right away and get treatment going."

    Me: "But you just said time didn't make a difference."

    Them: silence.

    These studies that show no benefit are a couple of studies from the 1990s from Europe where they randomized women into regular scan groups and no scan groups. They do not take into account current treatment advances, etc. It is really frustrating.

  • hopeful82014
    hopeful82014 Member Posts: 887

    Karen, do you happen to have any links for any of those studies? If so, it might be interesting to read them.

    As to scans, further muddying the waters is that so many TN women have quarterly scans as well as tumor markers. I realize that TN behaves differently, but what at the MOs going to do for them if they find a recurrence that they wouldn't do for an ER+? Maybe I'm overlooking something but I'm puzzled.

  • nancyhb
    nancyhb Member Posts: 235

    Them: "We don't do scans because studies show they do not make a difference in overall survival or how long you survive."

    For the life of me, I cannot grasp the logic behind this. There must be a short- and long-term advantage to finding mets earlier (say, a bone met in my hip at <1 cm) than later (say, when my hip fractures because of extensive mets), potentially leading to a longer period of NED (and longer OS?) Maybe there's something I'm missing...

  • grainne
    grainne Member Posts: 119

    kbee, I've had that kind of conversation as well.

    Patronising Consultant "well now, it IS cancer but we think it's treatable"

    Me (when I could breathe again) "why do you think it is treatable?"

    P C "because it's small"

    Me "is it not possible to be small but aggressive?"

    PC (impatiently) "we won't know that until we get the pathology report"

    Me (thinks) then why are you saying something that may or may not be true?

    What he knew but didn't bother to tell me was that it was er + and mostly dcis, which would have been reassuring. I got another consultant the next day. PC compounded the injury by adding the insult of writing to my g.p. and saying he had tried to counsel me but i was very resistant.

  • nancyhb
    nancyhb Member Posts: 235

    Hopeful, I'm TN, having a local recurrence from what was originally <50% ER+. Even with that - my MO won't do any scans unless there are significant symptoms, and doesn't have any faith in tumor marker tests. I know I can't necessarily prevent a recurrence, but if it's going to happen I' realky like to catch it sooner rather than later.