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I know people mean well . . .

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  • lauri
    lauri Member Posts: 59
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    Woodlands, maybe for those people you say "I will be getting treatments until God calls me home."

  • elderberry
    elderberry Member Posts: 1,067
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    Puppers: Yes, we do understand. Your DX is new and the shock, pain and grief is still raw. I have yet to come up with a good come back for those well-meaning folks. I honestly think some of those I know have forgotten I am Stage IV. After all, I am still here. Or they are decent or afraid or both and don't want to mention it all.

  • parakeetsrule
    parakeetsrule Member Posts: 605
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    How do you all handle Stage I-III breast cancer folks now? I know they aren't saying these things directly at me but I'm tired of seeing and hearing people saying stuff like "I'm cured! It's all gone! No more cancer! You beat it!" etc. Yeah, well, I thought that too and now it's back. I obviously don't say anything but it seems like people aren't very aware that you can never be sure it's actually gone, and that it's common for it to come back. One reason I haven't told many people about my Stage IV diagnosis is because so many people will cheer me on like it's curable, because they think breast cancer is. Just throw some more chemo at it!

  • amontro
    amontro Member Posts: 185
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    I have heard a lot of remarks and they're still coming. Those who know I have Stage 4 can't understand how I'm still around after more than 13 years, because I was supposed to die (my diagnosis). I tell them "Isn't it great?, but I'm dealing with a lot of side effects to meds." Then, of course they tell me how wonderful I look and how strong I am.

    I can remember being in the treatment room for many years and many who had ended their treatment were met with balloons, cakes, party hats, tee shirts along with their relatives and friends. At first it hurt knowing I'll never have the celebration, but now I realize their need to celebrate.

    Before COVID, my oncologist had a monthly meeting for her patients with breast cancer. Most of the women were in early stages and, because of their therapy/treatment, they were terrified. I don't think anyone was able to identify with a "long-timer" like me. Their stories were heartbreaking and I broke down a few times knowing how they were hurting and would get better.

    I find that I don't tell my full story because it started so long ago denovo with the diagnosis, radiation, mastectomy, chemotherapy. When, I mention that I'm still on the same chemo/meds as I was over 13 years, sometimes they "get it". I want to give others courage by adding that my oncologist, breast surgeon, GP talk about me now as the miracle patient. I worry that other patients will take it the wrong way.

    Someone once remarked "We're so glad you're still with us".

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,042
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    amontro,

    I am also a stage IV long hauler. In addition to my decade of survival, I have never looked unwell and continued working until my retirement. Quite a few folks seem to think my doctors may have made a mistake, others insist that since it’s been ten years I must be cured. I am grateful to look and feel relatively well, but it upsets me when folks second guess my doctor (none of these folks are mo’s!) or insist I’m cured.

    Parakeet,

    Breast cancer is not well understood by the general public and the years of pink-ification have led folks to believe that it’s an easily cured disease. I am somewhat annoyed by this but then I realize that I don’t know the fine details of diseases that I’ve had no personal experience with.

  • moth
    moth Member Posts: 3,293
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    parakeetsrule, well, I DO say stuff.

    i tell people "yay, I'm glad you're done treatment. Have you gone over risks and signs of recurrence?" and then refer them to sources.

    It's one thing for people who don't know anything about breast ca but for people who have done stage 1-3 treatment, they should understand what the stats look like and what stage 4 is.

    I wrote a guest post on Nancys Point in October which explored this divide between between early stage & 4. It's called "dear breast cancer "survivor' " https://nancyspoint.com/dear-breast-cancer-survivo...


  • kris_2000
    kris_2000 Member Posts: 93
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    ParakeetsRule, since I was diagnosed de novo it's really tough to hear early stage people say those things and celebrate being done with treatment. It's mostly because I'm angry and jealous that it will never be me. I also understand their need to celebrate. Plus,statistically speaking, 2 out of 3 of them will be done with it. Moth has some great advice for those in stages I-III. I'm sorry you're back and have to deal with the misunderstood stage IV.

    I recommend finding a website that you feel adequately explains MBC that you can share with people to educate them. I did this and it helped cut down on some of the comments. Check out the fredhutch.org article (title below) to see if it would be helpful.

    Living with Stage 4: The breast cancer no one understands


  • sondraf
    sondraf Member Posts: 1,630
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    Parakeets and kris - I see this all the time on some other boards I pay attention to (but dont post on). "Oh, dont worry most lumps are benign" and then it comes back like a <1cm or 1-2 cm and folks say "Oh, its no big deal, surgery, maybe some rads and you'll be done and off living life and putting this behind you". Yeah. Wish that had been me. I see ladies who are further along in Stage III land get frustrated they will be getting 9 months of treatment, that they aren't getting this cut out and done with in 6 weeks (like the majority of the other ladies) and want to shake them for not understanding how close they are to the precipice of it never ending, so suck it up and do the goddamn chemo.

    But I think this is the function of "normalising" breast cancer to the point where major surgery is tossed off as a minor inconvenience and everyone can go on with their lives "after this little bump in the road" (lord do I hate that phrase. One of my first BC nurses used it before they determined I was de novo). Their disease "experience" is not my disease experience but you can't explain the differences to them, or they are just happy their treatment worked and was "caught early" (ha!) and you get some platitudes about "keep fighting!" Yeah, talk is cheap when you get to walk away from this shitshow.

    I also see a huge difference between how much information is shared between US and UK patients and how informed each patient set appears to be (at least through online postings) but that understanding of early vs late is the common chasm.

    Whew, bit spicy this morning! :) BTW moth - Ive read that article a few times as it really covers the bases :)

  • kris_2000
    kris_2000 Member Posts: 93
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    SondraF, A precipice is a good way to describe it. I'm sure we all feel like we fell off that precipice. I know I do. I'm curious, what differences do you see between US and UK?

  • sf-cakes
    sf-cakes Member Posts: 575
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    Re-read that great article again, moth. It's so good. Thank you for writing it!

    My medical center has a breast cancer support group, but it's facilitated in a way to support those who've completed treatment. I'm not going to go rain on their parade, and I don't want to be in the position of trying to educate them about the possibility of metastatic disease because I would like some support for my own self! Fortunately, another medical center has a group specific to MBC and they accepted me with open arms.

    I've had the experience of telling a woman, who had breast cancer herself several years ago, that I am now stage 4, and she couldn't handle it. Stopped talking to me. SHE couldn't handle it! Good grief.

  • sadiesservant
    sadiesservant Member Posts: 1,875
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    It’s shocking to me when people don’t get it about this disease. Talk about Debbie Downer… I’m the one they don’t want to invite to the party. Stage IIa, grade 2 and surprise! Almost 16 years later and it’s back. There is no “done and dusted” with BC. So, I also struggle with the bell ringing and other meaningless rituals. As has been said, you know you are a survivor when you die of something else..

  • parakeetsrule
    parakeetsrule Member Posts: 605
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    That article was great, Moth! The Fred Hutch one is also good. And I think I will try to speak up more too. I had the opportunity the other day actually when somebody in one of my Facebook groups asked what kind of followup tests/scans would be done after her treatment was over. I responded by saying they only do those if you have symptoms, and that she should become familiar with the signs of recurrence so she'd know what to look for. But in general I feel like I'm going to rain on people's happy parade so I'm reluctant to say something while they're celebrating.

    I haven't decided yet if I will share my own news widely or not. The first time around I waited until after chemo and surgery and then made a Facebook post sharing what was going on with details about everything people might want to know. I might do the same thing again after I figure out if Piqray is working or not.

    I'm also feeling a little discombobulated because an acquaintance of mine had a breast cancer scare and based on what she said, it sounded like they thought it was going to be bad, maybe even Stage IV de novo. I reached out and we had a good conversation and THEN SHE FOUND OUT IT WAS STAGE 0. I was like....I just talked you off a ledge for Stage 0 while I just found out I'm Stage IV?! Sigh. It's ok though, I know she was just afraid and knows absolutely nothing about breast cancer. She's having a DMX and I was able to share some information about going flat that she'd had no idea about before and last time we talked, she was super excited about being able to knit her own knitted knockers. Lol.

  • amontro
    amontro Member Posts: 185
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    Parakeet -

    I thought I was the only one. Over the many years it seems when I talk to some other bc patients, they believe that their therapy and meds are the worst, and "Can you believe how terrible it is to have Stage 0-1-2-3?"

    Of course I empathize with them, so I don't stress my stage. This happens more than I'd like, but I've learned to deal with it. People will think what they think and most of the time there's nothing we can do about it.

    Just keep posting!

  • sondraf
    sondraf Member Posts: 1,630
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    kris_2000 - just circling back to your question - we don't have online portals here, or rather, not at the same level as in the US. Instead we have.... letters. I've received a raft of mail this week of letters Im copied into from my MO to my GP covering my diagnosis, current treatment, outcome, next steps. And its not just the MO, its also the SO and the plastic surgeons office too. Most of these are then posted to my NHS app, but I cannot access my scans or the total read of my scans. I cannot access my full tumor biopsy reports. Instead you are beholden to what you are told in clinic, which in the public system can be as short as 5 minutes. You may be spoken to by someone you have never met before (and may never meet again), who is an oncologist but may not be a breast-specific oncologist, so they keep the language very simple,very short, and there is very limited opportunity to ask questions. So to communicate a lot of concepts in very compressed time, with hardly any patient knowledge, they tend to rely on the tried and true of "think of it like a chronic disease!" and "there are lots of drugs we can try!" or "this is just a bump in the road!". And as there is no way for a curious patient to read more about their illness or ask questions, its just easier to accept the platitudes and go on your merry way trusting that the doctor with all their fancy letters after their name, who went to a fancy school and a fancy university, knows best.

    It drove me nuts so I went into the private system where I have the same breast-specific MO every month, for 15 mins+ if I need and can have a calm, collected conversation. She doesn't use any of those phrases either, and shows me my scans and my test results because she's been able to get to know me and knows I like to see things and understand. I still cant access this information in my own time, but at least Ive been able to SEE my mets and primary, psychologically that was important.

  • kris_2000
    kris_2000 Member Posts: 93
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    SondraF, Thanks for sharing your experience and the differences you see. I have sort of taken for granted the level of care that I get even though I know it's good and I'm so thankful for it. I know there are plenty even in the US that have more challenges with care. I'm glad you were able to get into the private system that gives you more information.

  • RhosgobelRabbit
    RhosgobelRabbit Member Posts: 502
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    I think moth's article should be printed out and handed out at BC support groups. There is a thread concerning recurrence rates in the forums for Stages 0-3. And there is argumentation about what the true recurrence rate is and some don't like it being bumped up because blah blah blah. I came across that thread while going through chemo for Stage 2b breast cancer. I had no idea the recurrence rate was roughly 30% even after all the standard fair. I learned that HERE I didn't learn that from any medical professional - no one told me. So I had an inkling thanks to that thread and it alerted to me to the fact that hey, this might not be a blimp in the radar like everyone had been pounding into my throughout my treatment. It was my first eye opening moment in the breast cancer fiasco. I was met with some resistance taking my port out at mastectomy following chemo. "We like to keep it in at least a yr or so after treatment" - I was so focused on getting that thing out of my body (port and tumor) that I wasn't thinking about anything else. So when Stage IV happened so quickly I felt I had been given false hope and that I had been lied to. It was such a cluster I cannot even put it into words. Not that I think Stage 0-3 should be scared out of their minds - but a moderate healthy dose of a reminder of what we're dealing with isn't bad. Breast cancer isn't the easiest or best cancer to get out there - its possibly the most deceptive.

    I did help an older friend with a breast cancer scare several months ago. She knows my diagnosis and she wanted to be talked down concerning what certain tests etc were like. I did it because she's my friend, but it was really hard. It was really hard also when it turned out to be nothing and then she subsequently in her relief tried to educate ME on the risks of breast cancer etc. She had another routine followup on the scare which was again fine and again I endured a education on her all clear status. This has strained the friendship some. I really try to maintain my standard of trying to treat others how I'd like to be treated - but that doesn't always happen and I'm afraid I may blow a gasket one day. I still keep in touch with my original chemo sisters who have mostly have moved on to maintenance, tho one joined me in Stage IV status a yr after me. With them I'm fortunate that they understand and thus I do not sugar coat things with them, also at their insistence. Other than them, I pretty much have confined myself to the Stage IV section, I don't really have anything in common with someone Stage 0-3, except fear - and this fear is much much different and treatment is an endless drum - until I get sick of beating it or the cancer doesn't let me. It isn't said to be mean or heartless to those at those Stages - I was there for awhile - its just that things are very different - Saving life vs Extending life.

  • sunshine99
    sunshine99 Member Posts: 2,693
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    Is moth's article titled: "Living with Stage 4: The breast cancer no one understands"? If so, I have it saved to a PDF on my computer. It's a really good article. If that's not it, can someone post a link to it?

    I have another article from Patient Empowerment Network. That article is titled : "Words Matter, Why Cancer Isn't a Game of Winners or Losers". I saved that article, too.

    I lose track of stuff, so my apologies if I asked this before and if one or more of you has replied, "Carol, you little nitwit, you already have that article! Check your computer!"

    There was another article, from the LA Times written by Susan Silk and Barry Goldman, titled: "How not to say the wrong thing". It was another good read, I thought.

  • puppers
    puppers Member Posts: 12
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    I was never, ever told that my breast cancer could come back. A couple years after my initial surgery and radiation in 2009, I was in the ER for pleurisy. It hurt when I breathed, and the first thing the ER doctor told me was "don't worry, your breast cancer has not come back." I told him, "no I'm not worried, I know that's not what it is." I said that only because I didn't know breast cancer could come back!

    Today I finished my second cycle of ibrance.... I'm so grateful to you ladies for your care and understanding as I put one foot in front on the other on this new journey of life. Love and blessings to you all!

  • RhosgobelRabbit
    RhosgobelRabbit Member Posts: 502
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    Puppers - 2 cycles in the books, woo hoo! :) Having a recurrence kinda feels like your back at square one, having a metastatic recurrence kinda feels like someone's ripped your guts out and then says "Carry on"...and your looking around saying "How??". One foot in front of the other lady. You'll come to a different place emotionally - I'm not sure if better is the word, it'll just feel different and you'll recognize it when it happens. You'll do it. You'll take a deep breath in and say...Hey, I'm still here, hot diggity. Its a big moment when you first let yourself smile and enjoy stuff again, even tho your scared too. The tears and everything else will still come in waves but something else kinda indescribable kicks in too - You'll get there. :) Onward to cycle 3! :) I start cycle 27 on the 1st - 100mg. :) Always around if you need us :) You may have started a great venting thread :)

    Sunshine:

    https://nancyspoint.com/dear-breast-cancer-survivor-by-margaret-young-a-metsmonday-featured-post/

    That's moth's article - great read. I'll have to search Dr. Google for the articles you mentioned in your post :)

  • nopink2019
    nopink2019 Member Posts: 384
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    he Nancy's Point article mentioned (https://nancyspoint.com/dear-breast-cancer-survivor-by-margaret-young-a-metsmonday-featured-post/) should be told to every early stage bc patient, all fundraising charities and posted for early stage readers of bc.org.

  • sunshine99
    sunshine99 Member Posts: 2,693
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    Thank you Rabbit. I found it, printed to a PDF and saved it. Now off to read it.

    Happy Monday!

    Carol

  • dancemom
    dancemom Member Posts: 404
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    moth, thanks for the article.

    Sondraf for sharing the difference in care various place. I realize I am very lucky in that respect.

    Rabbit, yes, the fear of not knowing is always around

    Stupid question. Maybe on the wrong thread, but...is there a reason to keep track of the number of cycles of Ibrance? I probably could figure it out, but between extra weeks off when reducing the strength and before procedures, I am not exactly sure. I figured I just keep taking it until I can't, pretending it's like any long term medication my parents or anyone would take for a chronic condition. Yeah, I know chronic is relative, but I am really hoping this stage 4 is VERY chronic.

    Saw my GP today for pre-op clearance exam. He is the one who did the original "you have cancer" phone call in march. Started out today with , "well, you've had quite a year...". Again said, "you did have regular mammograms? And covid delayed one?" I said only by a few months, the mammograms were 20 months apart. Then he reminded me of the advances in research, while checking in how my family is doing and how DH is handling it- I didn't tell DH until I was scheduled for the masectomy the first time, and dr told my today that it's not that unusual. Many women don't want to worry their families. Anyway, he made it all upfront and comfortable.

    Now I wait for my covid clearance...

  • moth
    moth Member Posts: 3,293
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    Dancemom, I don't think you need to count cycles. Most studies looking at pfs & os in the metastatic setting look at weeks and months, not cycles. (The big ibrance studies are the PALOMA trials)

  • dancemom
    dancemom Member Posts: 404
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    Thanks moth

  • chicagoan
    chicagoan Member Posts: 1,008
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    Dancemom-I keep track of my Ibrance cycles-I began cycle 68 last Friday! I like tracking the cycles-it feels like positive news to me. and it's very easy to do. I don't think you need to. As you say, we'll take it as long as it works and then move on when we need something different.

  • dancemom
    dancemom Member Posts: 404
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    Chicagoan 68 sounds like a good number to start with!

  • sunshine99
    sunshine99 Member Posts: 2,693
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    I keep track of my Ibrance cycles and doses as well as my Zometa infusions. I like spreadsheets and track my bloodwork, too. It gives me a tiny feeling of control.

    I had to look up PFS and OS again. PFS is Progression Free Survival and OS is Overall Survival. Did I get those right? Correct me if I'm wrong.

  • moth
    moth Member Posts: 3,293
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    sunshine, you've got it! PFS and OS are usual endpoints in phase 2 & 3 clinical trials so if you read research stuff you'll see those terms repeatedly.

    I used to track my results but lately I don't even look at them....precisely because I can't control them. I was stressing over trends I couldn't control and finally I decided to not even open them lol