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Im not on a "journey" and Im not a "warrior." Who is with me?

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  • sadiesservant
    sadiesservant Member Posts: 1,875
    edited August 2021
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    OMG illimae! How is that possible. (Can't imagine it's legal... )

  • illimae
    illimae Member Posts: 5,650
    edited August 2021
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    Sadieservant, I have no idea, I image she said he was his caretaker or something but honestly I’ve never checked much into it, perhaps I should.

  • alicebastable
    alicebastable Member Posts: 1,946
    edited August 2021
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    Make sure there's a note included "You don't deserve Ikea, so take a long hikea."

  • sunshine99
    sunshine99 Member Posts: 2,698
    edited August 2021
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    I'm wondering, too, how someone takes out a life insurance on someone without that person knowing - if that person is not a spouse. Creepy and scary!

  • jenacass
    jenacass Member Posts: 4
    edited August 2021
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    Amen, and amen. Until I started my radiation, I never approached my diagnosis like I had cancer. I treated the biopsy, surgery, and recovery just like I did my gallbladder. It was something to be removed from my body so I could get on with my life. The radiation, though, tripped me up because it was a daily reminder that I had been diagnosed. I'm not about pink ribbons or pity parties, and it was very difficult to accept help from others or a reduced case assignment at work. I feel like everyone wants to talk about my cancer and treatments, and I just want to move on.

    Nothing pissed me off more than the package of pink-ribboned paraphernalia my senior leader sent. I kept the soothing, organic body lotion and then packed every pink ribbon-decorated item (blanket, socks, satchel, notepad, pen, water bottle, wristband, key chain) in the box and delivered it to the oncologist office. Someone else will need it more than I did. The notepad had "Cancer will not define me" emblazed on the cover, which is ironically exactly what it did.

    I like the earlier comment because I too treated my cancer instead of fighting it. And leave the journey to The Bachelorette.

  • wavesofharmony
    wavesofharmony Member Posts: 106
    edited August 2021
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    I was diagnosed with metastatic breast cancer in January, 2020. I was initially sent to treatment for palliative care. No surgery, or radiation and given an expiration date of 24 months (maybe more, maybe less). I never thought of myself as a warrior but engaged in a process to live the best quality of life for as long as possible.

    A former co-worker was diagnosed about 6 months prior to me. She has totally embraced her diagnosis as who she is now. In fact her online avatar is one with a scarf on and all of her posts are about her various treatment appointments and scans. She makes a big deal about these appointments that generate people offering prayers, but she never says anything beyond these posts.

    After my diagnosis, in an early session with my therapist, we discussed the idea that the concept of “fighting” the cancer is actually sending signals to my body of working against my body. That my focus should be working within the natural processes of my body to re-establish more normal processes to create a less hospitable environment for the cancer. This has been my focus…living positively and using nutrition and lifestyle to create a different, healthier environment

  • divinemrsm
    divinemrsm Member Posts: 6,204
    edited August 2021
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    wavesofharmony, if you don’t mind my saying, the one thing I find shocking with your post is that you were given an “expiration date” of 24 months. From what I can tell by your signature line, you are dealing with bone mets only and er+ bc. Many people with this diagnosis get far more mileage than that from treatment these days, especially with the CDK inhibitors like the Ibrance you’re on.

    I was diagnosed bone mets from the start in early 2011. My oncologist at the time said very firmly, “With treatment, you could live years.” She emphasized years. Just as firmly, I asked her to define “years.” She did not give a definitive answer but said she had a patient who was almost 15 years living with mbc. Her answer was open ended and full of possibility. I am eternally grateful for her response.

    You can do the math from when I received the dx, I’m 10+ years living with mbc. Yes, some ups and downs along the way yet living a reasonably full life.

    Your screen name says it all, I agree many of us are better believing we should seek harmony with our bodies rather than karate chop our way through the jungle of bc.

  • wavesofharmony
    wavesofharmony Member Posts: 106
    edited August 2021
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    DivineMrsM,

    Thanks for your thoughts. The expiration date I was given came from the first Oncologist I saw. When we saw her for our consultation after all my scans came back, she downplayed the extent of the bone mets (she said there was a smattering when in fact they were throughout my spine and pelvis). She said she was going to give me 3 different medications, she wrote them down on a scrap piece of paper and told me to look them up online. She kept saying this approach would “buy” me years. When we pressed her to define what that meant, that was when she said the average was 2 years. My own research shows that her assessment was probably based on my age at diagnosis (60+). The crazy thing from that time was even with the extent of the bone mets, I had no real symptoms…no pain, just a little less stamina.

    Thankfully we sought out a second opinion and ended up with a great, supportive Oncology Team. I ended up taking the treatment course recommended by the first Oncologist. The difference is how it was explained. My current Team always takes the time to listen to me and give me information without sugar coating it.

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,052
    edited August 2021
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    waves,

    Good grief! Your first mo sounds as if she was behind the times. You definitely made a good move in switching to a new mo. I just passed the ten year mark and am thankful that no one gave me an expiration date. Clearly there are times when all tx has failed when discussing end of life is appropriate but in your case that wasn’t even remotely appropriate

  • moth
    moth Member Posts: 3,293
    edited August 2021
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    otoh, I think there's a - correct, IMO - move lately to provide patients with a prognosis right from the start. Median life expectancy is still 2-3 years (based on the crappy data we have). My cancer agency's website has the prognosis for my subtype as "typically survive a year or less". That was a kick in the teeth to read but I'd rather know than not know. And look at me, atypical already ;)

  • wavesofharmony
    wavesofharmony Member Posts: 106
    edited August 2021
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    moth,

    I agree with the thought of realistic assessments and knowing what is considered the normal course. Yes, it can be a kick in the teeth! When the first Oncologist gave her assessment we didn’t trust what she was saying because everything else didn’t fit. I recently saw a study that indicated that age at diagnosis also plays a part in life expectancy. I was diagnosed after 60 years of age, so that, according to the study, decreases my life expectancy. That was a kick in the teeth for me. But I reminded myself that I am not the typical 64 year old in terms of my attention to my activity.

  • traveltext
    traveltext Member Posts: 1,053
    edited August 2021
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    WoH, Great discussed here. The age of 60 is around the average for a bc diagnosis. The studies I’m familiar with indicate a poorer prognosis for those diagnosed in their 40s and especially triple neg or inflammatory sub types. And, mets to the bones are much more successfully treated these days.


  • exbrnxgrl
    exbrnxgrl Member Posts: 5,052
    edited August 2021
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    Yes, I agree that doctors should be honest but if they are simply presenting you with historical stats that needs to be tempered with hope. At this point in time, barring medical circumstances that I am not aware of, I think that saying 24 months to someone with bone mets might well be hope destroying. I think I might have lived my life differently if I'd be given an expiration date. The stress of watching the clock tick toward an end point would have beentoo anxiety provoking for me. Here I am 10 years later and not even close to expiring. I think my doctors were being very honest with me when they said that they would make no predictions but felt that my limited mets might bode well or at least as good as stage IV can be. It gave me hope and calmed me tremendously.

  • moth
    moth Member Posts: 3,293
    edited August 2021
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    It is a weird balance for oncologists. They know some people respond really well, but they can't tell who - so at the beginning, all they have is population wide stats and they can't tell whether they apply to the patient in front of them or not.

    Hope is so tricky. There are HR+ folks who start bone only but progress to organs fast. I don't know if it's better that they knew that 24 mos possibility from the start or if they were given the hope "some women live for many years" and then to have that rug pulled out from under them.... I just don't know. The data we have says <40% of bone only HR+ make it to 5 years. I know we have new CDK4/6 inhibitors and SERM/SERDs for HR+ since that study of 2010-2015 SEER pts but I don't see us budging the needle that far for most people (& also those stats are for de novos which tend to do better than recurrent) https://bmccancer.biomedcentral.com/articles/10.11... I think as we extend these studies we will see that there is a long trailing tail of exceptional responders but they statistically are just not that common - yet.

    I was given an expiration date *and* a little bit of hope. I'm hoping to be in the tail of exceptional responders to new triple neg therapies but again, for most of us, it doesn't work out that way.

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited August 2021
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    I agree with moth that hope is tricky. Wasn't there a paper linked somewhere here on the discussion group that promoted oncologists telling patients a *range* of survival times rather than an average? I think just knowing there is a tail of longer survival offers hope, while knowing it IS a tail allows patients to better make plans.

  • GG27
    GG27 Member Posts: 1,308
    edited August 2021
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    I have never been given "expiration date", when I got my new MO, I told her, I didn't want to know & she promised me she would never give one unless I specifically asked for it. I've had my ups & downs especially on some of these trials I've been on & thought well this is it. The only thing ever said to me was my old GP told me his sister lived with BC for 20 years, I didn't ask how long she had mets for.

  • runor
    runor Member Posts: 1,613
    edited August 2021
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    Moth, hope is indeed a tricky thing. I agree with you that getting your hopes up only to have the rug yanked out from under you is a cruel trick to someone who has already been kicked in the tit. But I'd hate to be a doctor with bad news on a paper on my desk and some terrified human sitting across from me. Can you imagine being in that position? Yuck. And how do you suss out the Truth Takers, those who want to know the real deal come hell or high water, from those who are made worse and react terribly to bad news bluntly delivered. For a doctor it must be like walking through a mine field. And even the question, how much time do I have? I absolutely believe that is not something any other human can possibly know. I think a useful answer might be, "people in your situation with X diagnosis and who take X treatment statistically have X time, but you are you and anything can happen."  Which is true. Anything can. What that anything is, is anyone's guess. 

    As to taking out an insurance policy on someone else. Not in Canada. Not legal. Can't be done. The ONLY person who can take out a life insurance policy on a life is the person who owns said life and no one else. I know this because once we had a financial advisor/investor guy who took us for tens of thousands of dollars. Us and many other people and the lost money added into the millions. We had to have a meeting with the RCMP. We told the RCMP outright that is we ever see him we are going to run the fat bastard over with our truck so we are admitting right here, right now, on the record that we intend to kill him. The RCMP said, yeah, well, that makes you about 78th on the list of suspects because that is exactly what everyone else has said too. Seems the RCMP were not too worried about Hubs and I as potential murderers. Besides, money stealer was long gone to some foreign locale and not hanging around downtown. Would be pretty hard to snuff a guy no longer on the same continent.

    A class action lawsuit was started and money was being raised to cover legal fees when I got the bright idea, hey...why don't we NOT sue him but instead take out a 2 billion dollar life insurance policy on him and instead of money going to legal fees we can pay the insurance premiums! It was genius!  I called my lawyer and asked if we would handle the ins and outs of this brilliant proposal and he said, shouted rather, "ARE YOU OUT OF YOUR FUCKING MIND!? That's the equivalent of putting a hit on someone! I can't even begin to tell you how illegal this is! I can't even HAVE this conversation with you or I will not be able to defend you! This conversation never happened!" Then he hung up on me.  So no, you cannot insure someone else. At least not in Canada.

  • divinemrsm
    divinemrsm Member Posts: 6,204
    edited August 2021
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    Some oncologists are horrifically misinformed. Six years after the mbc diagnosis, 2017, I went to a state-appointed disability oncologist who said it was impossible that I had metastasis, it was probably arthritis. He emphatically said women with metastatic breast cancer only live 3 to 5 years, tops. His words. He never read a single scan report or looked at any of the dvds I took him of my scans. I was turned down for disability, so I got a lawyer and was awarded disability.

    Some women go to oncologists who treat various forms of cancer. Not all of them are up on the latest developments of mbc. Hopefully, oncologists specializing in bc have greater understanding of the possibilities of long term survival with mbc.

    Both my oncologist and her nurse have been excellent at presenting bad news diplomatically and in a calm manner, what is referred to as bedside manner.



  • sf-cakes
    sf-cakes Member Posts: 576
    edited August 2021
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    I keep seeing the ads of celebrities encouraging people to Stand Up 2 Cancer. I don't know anything about that organization, went to their website and it strikes me as fairly vague, they "support research", and insist that I Donate Now. Maybe they're great? All I know is I don't like their tagline, standing up. What, I'm going to rise up and protest cancer? If I march down the street, will it go away? I can hear my cancer chuckling darkly from my bones at that silly idea.

    And the "2" instead of "to", good grief. I'd only accept that substitution from Prince, rest his soul.

    I think I may be grouchy tonight, but I am sitting my buns DOWN.

  • moth
    moth Member Posts: 3,293
    edited August 2021
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    Stand UP 2 Cancer is an entertainment industry initiative. They raise funds which are then sent to the American Association for Cancer Research. They have raised millions and their money goes to good work.

    They have 'dream teams' working on various initiatives, including a breast cancer dream team.

    SF-Cakes, your IBRANCE was developed though the breast cancer dream team!!!

  • sf-cakes
    sf-cakes Member Posts: 576
    edited August 2021
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    Lol, Moth, right after I posted my complaint about Stand Up 2 Cancer, I read something about how they were involved in creating Ibrance...and then deleted my post, offering mea culpas to the universe. Shite.

  • GG27
    GG27 Member Posts: 1,308
    edited August 2021
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    Stand Up to Cancer is the sponsor of the trial I am on at the moment, Tomivosertib & paclitaxol. I didn't see your complaint SF-Cakes, but thought you might appreciate having this info too. cheers, dee

  • alicebastable
    alicebastable Member Posts: 1,946
    edited August 2021
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    I like, and support, Stand Up To Cancer because they aren't single-cancer focused. I will occasionally donate to single-cancer causes as birthday or memorial requests, but with my own variety pack-o'-cancers, I'm uncomfortable with the perception of competitiveness in the single-cancer fund-raising.

  • grandmaadams
    grandmaadams Member Posts: 39
    edited August 2021
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    Hi ladies. I've been absent for a few days and have been reading through your posts. Gonna jump topic big time. Some of you may remember my posts reminding all to advocate for yourself, if you're not comfortable, etc. etc. I went in for my six month 3D Diagnostic Mammogram this past Monday and was sexually assaulted by the tech ... can't believe I'm writing that sentence. I uncovered my right breast, stepped up to the machine and the next thing I knew the woman had both hands on my breast rubbing and squeezing. I jumped back and yelled what the hell that's not OK. Nothing you just did had anything to do with putting me in that machine. She mumbled something about surgery. I said yes I've had surgery (gave details), is there anything else you need to know. I found out later she claimed I had gotten upset when she tried to put a surgery scar marker on me. BULLSHIT! All of you know how many markers and stickers we've had. I've had them put on me for earlier mammograms, breast MRIs and my radiation treatment. I reported the assault to the radiologist, he arranged for me to meet with the woman's supervisor who was a waste of space and oxygen. Supervisor explained to me, when I told her the tech said something about surgery, that she needed to put a sticker on my scar and she was looking for the scar. I glared on the supr and said I can guarantee you I know exactly where my scars are, NO ONE needs to go feeling for them. Stalked out of the idiot's office and went home, crawled into bed and pulled the covers over my head. After a couple of hours I gave myself a lecture, you're suppose to be advocating for yourself so do it. I got up and called the local police department and reported a sexual assault. I've talked to them via phone a couple of times and am waiting for a detective to call. Tuesday the Associate VP of Imaging Services called, said they had received a report and were taking it seriously, starting an investigation. I made sure she understood that any woman who had been through breast cancer didn't need anyone to look for their scars ... they've grieved over their scars, they've "doctored" (meds, bandages) their scars, they've stared in the mirror and wondered if they would ever feel normal again ... any woman that walked into that mammogram office who had had bc surgery knew exactly where the scars were and could point to them like pointing to the end of their nose. I am now waiting for a call from Patient Experience ???

    I want to call myself a Warrior now. I'M BEYOND PISSED. But there's no place to go to battle. I can't walk into the office and hit someone. They don't get it, they just don't get it. I'm in the 5 year follow-up stage, a 3D Diagnostic mammogram every 6 months. So every 6 months, starting about 2 weeks before appt., anxiety kicks in along with stomach upsets and sleeplessness. A mammogram turned my world upside down and with each test I worry what if? what if it's come back? what if it's worse? what if I get another devastating report? AND NOW THAT BITCH HAS ADDED ... what if the tech assaults me again. I'm not safe in that room with another female.

    I'm at a loss as to what to do with myself in the meantime. I have this churning inside I don't know what to do with. SHIT SHIT SHIT. Thanks for listening. I'm in a safe place and will survive this too. Venting definitely helps.

    I wonder if I can find Wonder Woman's Lasso of Truth. I'd wrap it around that bitch's neck.

    The Best Wonder Woman 1984 Quotes – Popcorner Reviews

  • goldensrbest
    goldensrbest Member Posts: 689
    edited August 2021
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    Grandmaadam - Holy 💩. So sorry that this happened but good for you for calling out the abuser and going up the chain of command. Please keep us posted as this evolves.

  • serendipity09
    serendipity09 Member Posts: 769
    edited August 2021
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    Grandmaadam - I applaud you! You called out the tech for something she's probably done go 100's of patients. I'm sorry you went through this, but do not beat yourself up, she did this to you and you took the necessary steps to ensure it hopefully will not happen again. For many medical staff it's probably just a habit to start touching and it's not right!

    Yesterday during my PT, while measuring my ROM, I mentioned a strain/pulling feeling on one of my breasts. Before even standing up from her chair, she asked me very politely if she could feel my breast and the scar. I appreciated that she asked and I thanked her. In my case we found that scar tissue is probably causing some motion restriction. She asked me very politely if it would be ok, to lightly massage the scar to see if I could get a bit of relief. My point being, she asked and was very attentive to my feelings and asked me if I was ok as she could tell I was uneasy. Not because of her specifically, but because I have not connected to my implants and I still mourn my breasts. I can barely look at them and the thought of anyone else touching them right now makes me cringe.

  • moth
    moth Member Posts: 3,293
    edited August 2021
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    I"ve had mammogram techs lift my breast and palpate my scar (which is very close to chest wall) before getting the breast in the machine. They've also had to rub (kind of rubbing along from the top and bottom) and push and squeeze my breasts to get it into the machine without creases. I've honestly never thought anything weird about it. I have heard they need to get the scar aligned right because tissue sometimes dimples weird around scars and that distorts the mammogram imaging.

    I'm sorry your experience was terrible for you.

    As a lactation consultant I have examined women's breasts in much more detail with way more prodding and poking than that. We ask for consent though consent in some settings is considered implied.

    I'm curious - if the tech had verbalized what they needed to do before touching you, would that have made a difference?


  • traveltext
    traveltext Member Posts: 1,053
    edited August 2021
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    Hi folks, Here's my article on BC and humor. Thanks to MoochiPie, Ceanna, SF-Cakes and Sadiesservant.

    https://advancedbreastcancer.net/living/coping-hum...


  • rah2464
    rah2464 Member Posts: 1,192
    edited August 2021
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    Well done, Traveltext.

  • wavesofharmony
    wavesofharmony Member Posts: 106
    edited August 2021
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    Traveltext,

    Great article! I find that sometimes other people don’t “get” the humor, but that’s okay. I regularly tell my Oncology Team that MBC has been the best thing for my health and they usually look at me like ai have 3 heads. But there is truth in the statement. At 64 years of age I am leaner, fitter and happier than I ever have been.

    Thanks for sharing