Lets do a Sh*t People say to Metastatic BC Patients
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I got a classic one today in a text from an old friend. She is sorry I am in the hospital again. She has not been feeling great herself lately. She doesn't think she is sick, though, just very tired. She hopes we both have a better 2022. Bless her heart.
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For some reason, an old thought came to mind. Up until a few years ago, I had an older primary care doctor who, of course, knew about my mbc, radiation, scans, s and treatment.
He was going to send me for an unrelated xray, but he decided not to because he said "I don't want you to glow in the dark".
Needless to say, I've changed PCPs.
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amonto - what did your PCP mean by that? As if the xray radiation was going to make you "glow"? Like that radiation might cause cancer or something? I'm glad you have a new PCP.
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kris_2000 -
You can't believe it, can you!.
Yes, he did mean that I was undergoing so many radiation/xray and toxic infusion treatments that I could probably glow in the dark.
At the time, I was rather amused, but I could have been upset. I think that's about the time that I started getting used to all the dumb comments I've heard over the years.
kris, you take care of yourself and don't take s**t from anyone!
- Anna
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I'm a hard stick and the tech trying to establish my IV line for a PET scan told me if I exercised more, it would be easier to find my veins.
This guy is routinely working with stage 4 cancer patients and said something so thoughtless. NOT TO MENTION THAT YOU'RE NOT SUPPOSED TO EXERCISE BEFORE A PET!
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I been NED for a few years now and a very good friend said to me the other day that I survived cancer again. I just said um.. no, there is no cure for MBC. I explained that to my family and close friends when I was first diagnosed. It's frustrating sometimes when they don't get it.
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amontro - I'm glad you were amused rather than angry.
I still continue to be amazed by the stupid sh*t.
Star2017 - I'm not quick on my feet to come up with good comebacks but at times like these, I wish I was. Even something like, "and if I didn't have cancer, maybe I'd feel like exercising".
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Today somebody said "I am so very sorry for what you are going thru. I am curious if you don't mind me asking.... how did it get to stage IV? Why did they not find it sooner?"
She seemed genuinely curious so I responded and explained. But it took me a minute to not feel like she was accusing me of doing something wrong that caused it! She recently had a DMX but I don't know her full diagnosis. She has not responded so now I'm wondering if I ruined her morning by basically telling her that her treatment might not save her either, since she apparently didn't know how it all works...
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ParakeetsRule, It always amazes me how ignorant people are when it comes to any stage 4 cancer. They seem to think it was or wasn't something the person did that caused it. I've had people say (not knowing I have MBC) that if people would eat more vegetables they wouldn't get cancer.
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ParakeetsRule, sounds like it was a sincere question. Of course she has more knowledge &interest after DMX, than many people, and is curious. I hope you told her the blunt truth, 20-30% early stage becomes MBC. How pathetic that there are no more accurate statistics. Not even something the researchers care about.
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Parakeets - look at it this way, you just educated her in a way her treatment team didn't and made her aware of the potential symptoms to watch for in the future. Its not raining on anyones parade, but it sucks that doctors cant seem to manage this challenging, but necessary, conversation when they "cure" early stage. I think a lot of folks get swayed by the high "cure" percentages and pat themselves on the back for "catching it early", but until there is a way to confirm, REALLY confirm that there isn't any cancer left in the bloodstream, folks need to be aware.
nopink - there was a long conversation at some point in the last year,year and a half about how those stats are tracked and why the data may not be that great due to collection factors which makes it more difficult to really say, with certainty,what percentages are. That being said, we all know more than most that someone needs to be on the wrong side of any percentage or odds, you just never think it will be you!
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Yep, I definitely mentioned that percentage! We ended up having a pretty good conversation and a few more people also joined (it was on Facebook). Later she mentioned that it was also scary because we didn't know what symptoms to look for and I was like...well, actually...and shared the list from this website. 🤷🏻♀️0 -
Lumpie just posted the results of a large study - first reliable estimate of how many develop metastatic disease
https://community.breastcancer.org/forum/73/topics...
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Lumpie posted quite a few interesting things just then!
I see Komen sponsored that mets study, though. Perhaps the Big Pink Ship will be turning in their messaging/approach soon?
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Moth and Lumpie - thanks for posting! The other day my boss saw me in the office and said "you're a cancer survivor!"
He doesn't know the extent of it, but my manager knows. I guess I have survived thus far. I guess everyone is a survivor. If you make it to work after a long commute you are a traffic survivor. I don't know, I'm just rambling now, waiting on scan results....0 -
In defence of the docs, I don’t think it is a simple black or white question. My MO, who another patient described as not pulling his punches, told me I would be just fine when I finished treatment for early stage disease. I, however, was very aware of the potential for recurrence given my age and the details of the cancer. While I agree that people should be aware, 20-30% becoming metastatic still means many/the majority don’t. That’s a lifetime of stress and looking over your shoulder - something that kind of sucks the joy out of the room, particularly for some folks.
It’s something I have considered a lot over the years and I’m darned if I have been able to figure out the best approach. I am a firm believer that a patient has a right to know if the cancer has metastasized (used to think periodic scanning should be offered) but also recognize the impact that this slow march towards death has had on my psyche. Definitely influenced the decision making process!
All to say, I agree that patients need to understand the potential for it to return but… And, we also need to factor in what the MO says versus what is heard…. 😊
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I am told to be a warrior and fight my cancer. In cancer obits they are often described as “losing their battle” with cancer. As if we had a choice in the outcome simply by being brave. I don’t hear diabetes patients to fight their illness. Drives me nuts.
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read Susan Sontag essay-“Illness as a metaphor” and you can see why she told almost no one about her cancers. It is not a romantic illness there is a lot of warrior language in cancer. I hate the warrior references also- if you lose the battle it’s your responsibility.
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So many have asked how can I be stage iv but not be immediately terminal? I have not had any surgeries. I have no pain. My chemo only lasted 5 months. If it weren't for my newly sprouted silver hair, most would not believe I am sick.
All nicely wrapped up in a one hour episode. That's what makes THEM feel better about encounters with me. I used to be one of them...
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pamcobourn and susanv042821, welcome to the BCO community! We hope you will remain active and keep sharing your stories with our members. Please know that we are here as well if you need us, so if you have any questions for us please do get in touch.
Warm wishes,
The Mods
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As a medical & scientific collaboration, we now have a vaccine for an illness that appeared out of nowhere? Why can't those same groups develop a cure for all cancer
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This is so true. It's not really a battle because we are "fighting" the unknown. I refuse to call my mbc a fight; it's just the life God gave me to deal with.
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I just had to post. Thursday, I went for treatment and my cancer nurse was very attentive. So, I started telling her about a medical side effect that made me worried. She was still nice, but she had no clue how to address my problem.
The week before, I told a medical nurse about some itching I was having after a new infusion, and she said how her hands itch if she touches something she may be allergic to.
How do we get these people to help us if they can't help themselves?
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Tonight I had dinner with 3 friends who have known about my diagnosis for at least 4 years. They were talking about how many more years they expected to live-the range was 20-30 years. Then one turned to me and said how about you? I said, since I have a terminal diagnosis I feel like I have already exceeded my expiration date. I said this with a smile but she pushed-no really-how much longer do you think you'll live? I finally said-I have no idea and neither do you.
Later in the conversation, a woman who lost her fiancee four years ago complained about the lack of support for widows in our city. She said-"They have all this stuff for cancer patients-support groups, hospice but there's nothing for widows! " So I said-yeah it's really great having cancer. No apology offered. SMDH.
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Tonight I had dinner with 3 friends who have known about my diagnosis for at least 4 years. They were talking about how many more years they expected to live-the range was 20-30 years. Then one turned to me and said how about you? I said, since I have a terminal diagnosis I feel like I have already exceeded my expiration date. I said this with a smile but she pushed-no really-how much longer do you think you'll live? I finally said-I have no idea and neither do you.
Later in the conversation, a woman who lost her fiancee four years ago complained about the lack of support for widows in our city. She said-"They have all this stuff for cancer patients-support groups, hospice but there's nothing for widows! " So I said-yeah it's really great having cancer. No apology offered. SMDH.
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chicagoan - Your interaction is something I've been thinking about as next week I'll see some people that are aware of my diagnosis, but since I'm tolerating most treatments, I gather they don't realize that each time I change meds that is it one step closer to being out of options. I did relay to them that I'm trying to keep on this drug as the MO has effectively said that "there is only 1 more arrow in my quiver". I don't think anyone even understood what I meant. I may also get some "just pray" or "everything happens for a reason" comments. I like your comment about reaching your expiration date. And the comment about hospice????
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chicagoan - Your interaction is something I've been thinking about as next week I'll see some people that are aware of my diagnosis, but since I'm tolerating most treatments, I gather they don't realize that each time I change meds that is it one step closer to being out of options. I did relay to them that I'm trying to keep on this drug as the MO has effectively said that "there is only 1 more arrow in my quiver". I don't think anyone even understood what I meant. I may also get some "just pray" or "everything happens for a reason" comments. I like your comment about reaching your expiration date. And the comment about hospice????
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NoPink-I guess other people just don't get it. If we look okay, we must be fine. I now use "terminal cancer" instead of metastatic but people keep assuming that my treatment is over and I'm fine. I hope that you can stay on your current treatment a good long time.
Another thing came up in the conversation. I mentioned that 3 male friends who had various cancers have died in the last 6 months. Response-"They're male."
To be honest, I didn't really understand cancer until I had it. No one wants to know about it until absolutely necessary.
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NoPink-I guess other people just don't get it. If we look okay, we must be fine. I now use "terminal cancer" instead of metastatic but people keep assuming that my treatment is over and I'm fine. I hope that you can stay on your current treatment a good long time.
Another thing came up in the conversation. I mentioned that 3 male friends who had various cancers have died in the last 6 months. Response-"They're male."
To be honest, I didn't really understand cancer until I had it. No one wants to know about it until absolutely necessary.
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This time the cure is apparently intermittent fasting. Lol. People seem to mention these things trying to be hopeful. I just say oh that's interesting. But yeah. I will intermittently eat pie instead.
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