Got a very overwhelming perspective from a friend (cancer survivor).
December 5, 2023 5:15 PM Subscribe
I announced my recent prognosis to a friend who had colon cancer as well. Her response was very overwhelming, and I'm having a hard time processing. I also need help to get a second opinion (NCI) through my insurance (Kaiser, HMO) and other bottlenecks.
Firstly, apologies for the heaviness of this question, there are many moving parts, but I need help/pointers processing all this and moving forward.
Friend's reaction/suggestions
My friend had colon cancer (lower stage than mine, fully healed I think). When I shared the news (6-12 months prognosis, up to 5 years with immunotherapy), she got very angry and said my oncologist should have been fired. Apparently, according to her, my oncologist shouldn't have said that—it was very negative and gave me such a depressing outlook. She thinks my oncologist did a lousy, terrible job and should have been more positive. She said MANY people are told such a low prognosis yet they live a long time, and that my oncologist shouldn't have went straight to the "nuclear" option by saying I'd basically die within x timeframe.
My perspective: I honestly appreciated what my oncologist told me. It helped give me a clear timeframe/picture. I also trust her because the information she had supplied up to now has been accurate and true. She also has good bedside manner. Now, my feelings are shaken because my friend had some convincing points and she is a colon cancer survivor.
The question: I'm so overwhelmed and don't know what to think. My friend, because she is a cancer survivor, made me really think. What if she's right and my doctor is wrong? But I told my family/friends already. I just don't know what to think.
Getting a second opinion: knocking against a wall (Deaf accommodation)
I decided to get a second opinion from Mayo Clinic, a NCI-certified cancer center. Because of reasons, I prefer to do the dialogue via email (Deafness, going through video relay interpreters can be shaky at times, etc). After some deep digging, I finally found an email address (their "customer care" center). Reached out, they insisted I needed to call. Asked for reasonable accommodations because I am Deaf, explained I preferred email, but they refused and kept referring me to the phone center. I can perhaps call, but I DO NOT WANT TO. I want to explain this via email. I am getting nofuckingwhere with Mayo Clinic, and I am honestly surprised. They're well known for their reputation for healthcare, but this is basically discrimination.
The question: How do I get past this? I feel discouraged and hopeless.
Kaiser (HMO) to cover NCI referral/outside network?
Earlier this year, I asked Kaiser for a referral to an outside network NCI doctor for a second opinion. I was denied because "Kaiser already has oncologists". I subsided because I didn't have the time or inclination. However, with this new information, and the possibility my friend is right and the oncologist is wrong, I want a second opinion outside of Kaiser, and I do not want to pay a huge amount of money for it. I want Kaiser to accept the referral.
The question: How do I make this happen?
I am overwhelmed. I felt tired and sad all day. I do not know what to think. I do not need this added bullshit. YANMD, you are not Kaiser, you are not my friend, but please help me digest this and see this clearly.
Thanks.
Firstly, apologies for the heaviness of this question, there are many moving parts, but I need help/pointers processing all this and moving forward.
Friend's reaction/suggestions
My friend had colon cancer (lower stage than mine, fully healed I think). When I shared the news (6-12 months prognosis, up to 5 years with immunotherapy), she got very angry and said my oncologist should have been fired. Apparently, according to her, my oncologist shouldn't have said that—it was very negative and gave me such a depressing outlook. She thinks my oncologist did a lousy, terrible job and should have been more positive. She said MANY people are told such a low prognosis yet they live a long time, and that my oncologist shouldn't have went straight to the "nuclear" option by saying I'd basically die within x timeframe.
My perspective: I honestly appreciated what my oncologist told me. It helped give me a clear timeframe/picture. I also trust her because the information she had supplied up to now has been accurate and true. She also has good bedside manner. Now, my feelings are shaken because my friend had some convincing points and she is a colon cancer survivor.
The question: I'm so overwhelmed and don't know what to think. My friend, because she is a cancer survivor, made me really think. What if she's right and my doctor is wrong? But I told my family/friends already. I just don't know what to think.
Getting a second opinion: knocking against a wall (Deaf accommodation)
I decided to get a second opinion from Mayo Clinic, a NCI-certified cancer center. Because of reasons, I prefer to do the dialogue via email (Deafness, going through video relay interpreters can be shaky at times, etc). After some deep digging, I finally found an email address (their "customer care" center). Reached out, they insisted I needed to call. Asked for reasonable accommodations because I am Deaf, explained I preferred email, but they refused and kept referring me to the phone center. I can perhaps call, but I DO NOT WANT TO. I want to explain this via email. I am getting nofuckingwhere with Mayo Clinic, and I am honestly surprised. They're well known for their reputation for healthcare, but this is basically discrimination.
The question: How do I get past this? I feel discouraged and hopeless.
Kaiser (HMO) to cover NCI referral/outside network?
Earlier this year, I asked Kaiser for a referral to an outside network NCI doctor for a second opinion. I was denied because "Kaiser already has oncologists". I subsided because I didn't have the time or inclination. However, with this new information, and the possibility my friend is right and the oncologist is wrong, I want a second opinion outside of Kaiser, and I do not want to pay a huge amount of money for it. I want Kaiser to accept the referral.
The question: How do I make this happen?
I am overwhelmed. I felt tired and sad all day. I do not know what to think. I do not need this added bullshit. YANMD, you are not Kaiser, you are not my friend, but please help me digest this and see this clearly.
Thanks.
Mayo has an Office of Patient Experience that seems like the place to make this complaint: https://www.mayoclinic.org/about-mayo-clinic/patient-experience.
But honestly I would probably try to get a helper to make the phone call to set up the appointment and ensure you have an interpreter at the actual appointment.
posted by haptic_avenger at 5:22 PM on December 5, 2023 [4 favorites]
But honestly I would probably try to get a helper to make the phone call to set up the appointment and ensure you have an interpreter at the actual appointment.
posted by haptic_avenger at 5:22 PM on December 5, 2023 [4 favorites]
Check with Roswell Park in Buffalo NY...World class cancer center...
posted by Czjewel at 5:29 PM on December 5, 2023 [2 favorites]
posted by Czjewel at 5:29 PM on December 5, 2023 [2 favorites]
Another idea: Memorial Sloan Kettering has a second-opinion service.They actually list the name of the person responsible for interpretation services, which sounds potentially promising!
As for Kaiser … can’t you switch insurance?
posted by haptic_avenger at 5:33 PM on December 5, 2023 [8 favorites]
As for Kaiser … can’t you switch insurance?
posted by haptic_avenger at 5:33 PM on December 5, 2023 [8 favorites]
Response by poster: Mayo has an Office of Patient Experience that seems like the place to make this complaint: https://www.mayoclinic.org/about-mayo-clinic/patient-experience.
That's precisely the office I emailed, and where I am experiencing the bottleneck. Problem is, to make an appointment, they want to set up a callback. I cannot accept calls due to how the relay service is setup. I also don't want to have to depend on someone else, and I want to keep this personal and not have anyone involved. That is why I am stuck. I know it sounds complicated but right now, I don't have the energy to explain it more clearly—simply put, I need to communicate via email in this instance. I need that request/reasonable accommodation to be honored.
As for Kaiser … can’t you switch insurance?
It would be too complicated. Their system is too convenient for me—everything in one place, message portal, they have my history, etc. Anyway, I am trying to figure out how to get them to accept the referral, so helpful scripts would be appreciated—I am not looking to switch insurance at this time.
posted by dubious_dude at 5:37 PM on December 5, 2023 [1 favorite]
That's precisely the office I emailed, and where I am experiencing the bottleneck. Problem is, to make an appointment, they want to set up a callback. I cannot accept calls due to how the relay service is setup. I also don't want to have to depend on someone else, and I want to keep this personal and not have anyone involved. That is why I am stuck. I know it sounds complicated but right now, I don't have the energy to explain it more clearly—simply put, I need to communicate via email in this instance. I need that request/reasonable accommodation to be honored.
As for Kaiser … can’t you switch insurance?
It would be too complicated. Their system is too convenient for me—everything in one place, message portal, they have my history, etc. Anyway, I am trying to figure out how to get them to accept the referral, so helpful scripts would be appreciated—I am not looking to switch insurance at this time.
posted by dubious_dude at 5:37 PM on December 5, 2023 [1 favorite]
Can your current Dr try to make the connection/ get you an appointment?
posted by mermaidcafe at 5:40 PM on December 5, 2023 [3 favorites]
posted by mermaidcafe at 5:40 PM on December 5, 2023 [3 favorites]
I can’t help with the specific logistics, but I do wonder if you may want to reflect on why you’re so keen to throw out the medical opinion you trusted just the day before and an entire network of health professionals who might give you a second opinion because one friend disagreed with one of them?
Having seen your questions before, I do notice you tend to have very outsized reactions to things people say to you sometimes and this feels a lot like that and trying to get some control back on your life. Like to me from the outside I would have a difficult time as Kaiser understanding why a second opinion in network isn’t the logical next step - because medical doctors operate independently from one another and so the objective second step seems very doable. So why take this much harder and more stressful road?
posted by openhearted at 5:54 PM on December 5, 2023 [39 favorites]
Having seen your questions before, I do notice you tend to have very outsized reactions to things people say to you sometimes and this feels a lot like that and trying to get some control back on your life. Like to me from the outside I would have a difficult time as Kaiser understanding why a second opinion in network isn’t the logical next step - because medical doctors operate independently from one another and so the objective second step seems very doable. So why take this much harder and more stressful road?
posted by openhearted at 5:54 PM on December 5, 2023 [39 favorites]
Did your Kaiser healthcare team hook you up with an oncology social worker? I would ask them to speak with one. They may be able to help you with the referral and with general advice/support about what you're going through.
posted by kimberussell at 6:02 PM on December 5, 2023 [9 favorites]
posted by kimberussell at 6:02 PM on December 5, 2023 [9 favorites]
There are several questions here. I'm not going to answer the second opinion one, or the communication, but want to speak to the idea of "your friend being right and your doctor being wrong."
I am not an oncologist, but I've had two immediate family members die from cancer. In my experience, some oncologists don't like to give you odds. These oncologists don't like to say, "90% live this long, 10% live that long." They don't want you to think of yourself as a statistic. They don't want you to live into that short term horizon. Because there are some people who do live a whole bunch longer. And they want to encourage that optimism.
But the fact that they don't want to share those numbers doesn't mean the numbers are wrong. It just means that they aren't the thing to focus on.
It sounds like your friend is like those oncologists. Don't focus on the statistics, because you aren't a statistic. You are a particular person, and anything can happen with a particular person.
Not all oncologists are like that, though. And not all patients want to be treated that way. "Give it to me straight, doc. How long do I have?" It sounds like that's what your doctor did, and that's a perfectly reasonable choice. You say your doctor has a good bedside manner, so I'd trust them. 6-12 months and up to five years is quite a range. So they are leaving room for that.
I would get a second opinion. But that's doesn't need to be because you don't trust your doctor. You can trust your doctor and still get a second opinion, because your life is worth it. Now is not the time to be shy, or to worry about being a bother. Your life is worth it. Get that second opinion. And keep seeing your doctor if you like them. And let your friend process her own issues without making you feel bad about what's already got to be so difficult.
Best of luck and strength to you.
posted by Winnie the Proust at 6:18 PM on December 5, 2023 [46 favorites]
I am not an oncologist, but I've had two immediate family members die from cancer. In my experience, some oncologists don't like to give you odds. These oncologists don't like to say, "90% live this long, 10% live that long." They don't want you to think of yourself as a statistic. They don't want you to live into that short term horizon. Because there are some people who do live a whole bunch longer. And they want to encourage that optimism.
But the fact that they don't want to share those numbers doesn't mean the numbers are wrong. It just means that they aren't the thing to focus on.
It sounds like your friend is like those oncologists. Don't focus on the statistics, because you aren't a statistic. You are a particular person, and anything can happen with a particular person.
Not all oncologists are like that, though. And not all patients want to be treated that way. "Give it to me straight, doc. How long do I have?" It sounds like that's what your doctor did, and that's a perfectly reasonable choice. You say your doctor has a good bedside manner, so I'd trust them. 6-12 months and up to five years is quite a range. So they are leaving room for that.
I would get a second opinion. But that's doesn't need to be because you don't trust your doctor. You can trust your doctor and still get a second opinion, because your life is worth it. Now is not the time to be shy, or to worry about being a bother. Your life is worth it. Get that second opinion. And keep seeing your doctor if you like them. And let your friend process her own issues without making you feel bad about what's already got to be so difficult.
Best of luck and strength to you.
posted by Winnie the Proust at 6:18 PM on December 5, 2023 [46 favorites]
She said MANY people are told such a low prognosis yet they live a long time, and that my oncologist shouldn't have went straight to the "nuclear" option by saying I'd basically die within x timeframe.
This isn’t a direct (or even indirect) answer to your question, but you should be aware that prognosis timeframes in the US are notoriously over-optimistic (and that the this has been studied extensively). Your friend’s heart is surely in the right place, but their facts are extremely wrong and I don’t want to see you making major decisions based on misinformation.
posted by not just everyday big moggies at 6:18 PM on December 5, 2023 [21 favorites]
This isn’t a direct (or even indirect) answer to your question, but you should be aware that prognosis timeframes in the US are notoriously over-optimistic (and that the this has been studied extensively). Your friend’s heart is surely in the right place, but their facts are extremely wrong and I don’t want to see you making major decisions based on misinformation.
posted by not just everyday big moggies at 6:18 PM on December 5, 2023 [21 favorites]
While I don't know why doctors policies might not include email (though it should to be fair for Deaf patients certainly!) here is one side thing I really would think you should try very very hard not to worry about at all:
What if she's right and my doctor is wrong? But I told my family/friends already.
You seem anxious that because you might have told your family your hard news about dying within 5 years, they will somehow have been misled or inconvenienced if that hard news doesn't come true.
Your loved ones should simply be joyful for every year that news doesn't come true. Period.
Think of it this way. Someone might tell your healthy relative of age 60 that they have a statistical probability of living to 85. However, despite statistics, they might die at age 61 or they might die at age 100. No one has guarantees, we only have probabliity.
So don't worry about what your already told your family, at least! You shared your doctor's opinion with them. It's not a contract - it is just the perspective you were given. It is very hard for you not to know these things and you deserve simply support in your journey.
posted by little striped mule at 6:31 PM on December 5, 2023 [12 favorites]
What if she's right and my doctor is wrong? But I told my family/friends already.
You seem anxious that because you might have told your family your hard news about dying within 5 years, they will somehow have been misled or inconvenienced if that hard news doesn't come true.
Your loved ones should simply be joyful for every year that news doesn't come true. Period.
Think of it this way. Someone might tell your healthy relative of age 60 that they have a statistical probability of living to 85. However, despite statistics, they might die at age 61 or they might die at age 100. No one has guarantees, we only have probabliity.
So don't worry about what your already told your family, at least! You shared your doctor's opinion with them. It's not a contract - it is just the perspective you were given. It is very hard for you not to know these things and you deserve simply support in your journey.
posted by little striped mule at 6:31 PM on December 5, 2023 [12 favorites]
Friend's reaction/suggestions
A lot of people are going to have big feelings about your news and circumstances. You have a choice about whether reacting to other peoples' feelings is how you want to spend your time. I can't say that I understand what you're going through, but from where I am in my life right now, I think I'd try to hear those big feelings as love and care for me, rather than things for which I need to shift my life around.
"What if she's right and my doctor's wrong? I just don't know what to think." Your situation is by definition an unknown. Not-knowing is a human condition that you're feeling acutely right now. We all experience it at some time or another. You may continue feeling it, you may not. Would some kind of mindfulness practice help you feel more at peace with not knowing?
posted by cocoagirl at 6:36 PM on December 5, 2023 [7 favorites]
A lot of people are going to have big feelings about your news and circumstances. You have a choice about whether reacting to other peoples' feelings is how you want to spend your time. I can't say that I understand what you're going through, but from where I am in my life right now, I think I'd try to hear those big feelings as love and care for me, rather than things for which I need to shift my life around.
"What if she's right and my doctor's wrong? I just don't know what to think." Your situation is by definition an unknown. Not-knowing is a human condition that you're feeling acutely right now. We all experience it at some time or another. You may continue feeling it, you may not. Would some kind of mindfulness practice help you feel more at peace with not knowing?
posted by cocoagirl at 6:36 PM on December 5, 2023 [7 favorites]
One idea: can you connect with a Mayo doctor initially through whatever method they prefer, then give more details through e-mail / their secure patient system?
FWIW I do not think you are having an outsized reaction. Good grief.
Another idea: rather than saying, "I need to do x" to Mayo -- and this absolutey might not help, but it might -- try saying "This is my life and I cannot make verbal communication work adequately for me even with [whatever they're suggesting]. What would it take for [result you need: me to be able to explain this in writing, etc.]"?
One more idea: Use the phone/video visit time to get the doctor to read your writing.
If they are trying to set up a video call, go ahead and do that, but at the beginning of the call present the doctor with your written document.
This might be about making sure they can get paid for their time -- it may be a lot easier to bill for phone/office time than for "time reading e-mail". Even if there's another reason, by giving them the info to read during the appointment, you get what you need and they get what they need.
- Check ahead of time to see if you can interact _after_ the appointment with written questions - but plan carefully so you don't have to do this a lot.
- Make absolutely sure you can get the written document to them during the appointment (or maybe before). If needed, you could put it up at Wordpress.org/dubiousdudedoc or something, but also: you can lean on Mayo or whoever to walk you through whatever software they use so you can understand text chat features. Also make sure you get a "yes" from them to "May I give the doctor something to read at the start of the appointment?", keep that answer, and be ready to show/read it to the doctor at the start of the appointment if they give you pushback. They will probably be fine with it and not give you any trouble, but it makes sense to prepare just in case.
Then IF things don't work out, you could potentially use this documentation to get whatever extra appoinment/communication time you need for a satisfactory answer.
posted by amtho at 6:40 PM on December 5, 2023 [7 favorites]
FWIW I do not think you are having an outsized reaction. Good grief.
Another idea: rather than saying, "I need to do x" to Mayo -- and this absolutey might not help, but it might -- try saying "This is my life and I cannot make verbal communication work adequately for me even with [whatever they're suggesting]. What would it take for [result you need: me to be able to explain this in writing, etc.]"?
One more idea: Use the phone/video visit time to get the doctor to read your writing.
If they are trying to set up a video call, go ahead and do that, but at the beginning of the call present the doctor with your written document.
This might be about making sure they can get paid for their time -- it may be a lot easier to bill for phone/office time than for "time reading e-mail". Even if there's another reason, by giving them the info to read during the appointment, you get what you need and they get what they need.
- Check ahead of time to see if you can interact _after_ the appointment with written questions - but plan carefully so you don't have to do this a lot.
- Make absolutely sure you can get the written document to them during the appointment (or maybe before). If needed, you could put it up at Wordpress.org/dubiousdudedoc or something, but also: you can lean on Mayo or whoever to walk you through whatever software they use so you can understand text chat features. Also make sure you get a "yes" from them to "May I give the doctor something to read at the start of the appointment?", keep that answer, and be ready to show/read it to the doctor at the start of the appointment if they give you pushback. They will probably be fine with it and not give you any trouble, but it makes sense to prepare just in case.
Then IF things don't work out, you could potentially use this documentation to get whatever extra appoinment/communication time you need for a satisfactory answer.
posted by amtho at 6:40 PM on December 5, 2023 [7 favorites]
Re: persuading Kaiser to cover this - are there blogs by people who share experiences working within the Kaiser system? Maybe there's better guidance there.
Your state also probably has an insurance commissioner. Look up that department and ask them for advice.
posted by amtho at 6:55 PM on December 5, 2023 [1 favorite]
Your state also probably has an insurance commissioner. Look up that department and ask them for advice.
posted by amtho at 6:55 PM on December 5, 2023 [1 favorite]
I read this and think, what are your friend's emotional biases here? What in her is making her want to fight a war against your oncologist?
Your friend "beat" cancer: they're inclined to think with hindsight "oh, that wasn't so bad". They probably are thinking, or want to think, that their own ordeal is all done too; "there's no risk of remission, it wasn't that big of a deal". And hearing something for your prognosis that's much worse than what they are ready to accept for themselves would shake anyone - "maybe my experience isn't typical; maybe I really could have died."
All this on top of the usual reasons people don't want to accept bad news and are bad at facing mortality specifically. She's not just having to face that you might die, she's having to face that some alternative version of herself might die.
posted by Lady Li at 7:06 PM on December 5, 2023 [15 favorites]
Your friend "beat" cancer: they're inclined to think with hindsight "oh, that wasn't so bad". They probably are thinking, or want to think, that their own ordeal is all done too; "there's no risk of remission, it wasn't that big of a deal". And hearing something for your prognosis that's much worse than what they are ready to accept for themselves would shake anyone - "maybe my experience isn't typical; maybe I really could have died."
All this on top of the usual reasons people don't want to accept bad news and are bad at facing mortality specifically. She's not just having to face that you might die, she's having to face that some alternative version of herself might die.
posted by Lady Li at 7:06 PM on December 5, 2023 [15 favorites]
I had a cancer recurrence while insured through Kaiser. I got a second opinion from another local Kaiser doc, and when the difference in opinions overwhelmed me and stalled the start of treatment, it was my Kaiser oncologist who made an out-of-network third opinion happen. In addition to the doctor requesting it from the admin side, I think getting Kaiser to cover a third opinion was made easier after I'd gotten a second one in-network. HMOs do seem to like making patients jump through hoops, which is I'm sure is something you have lots of energy for right now. Take care.
posted by strivesc at 7:23 PM on December 5, 2023 [9 favorites]
posted by strivesc at 7:23 PM on December 5, 2023 [9 favorites]
My friend, because she is a cancer survivor, made me really think. What if she's right and my doctor is wrong? But I told my family/friends already.
Being a cancer survivor doesn't give your friend any special knowledge about your cancer. Every cancer patient is different, and she can't predict your future.
I didn't get the impression that your oncologist made a specific prediction. She just told you what the general outlook is - and she was honest about it, and you appreciated that. It sounds like she wouldn't be a good oncologist for your friend, but that's not a problem, since she's not your friend's oncologist.
Your friend is correct that many people outlive their doctor's prognosis, but that doesn't mean your doctor shouldn't be straight with you about what the statistics say.
I would strongly suggest severely limiting what you tell this friend. She obviously has her own shit going on, which is fine, but not something you are currently up to dealing with. I'm a cancer patient as well, and the longer I've dealt with this, the better I've gotten at being very particular about what I tell specific people. There are now maybe three people I'm completely honest with - and one of them is my therapist. There are extremely kind and well meaning people I don't tell anything to anymore just because I don't want to have to deal with their reactions.
You get to protect yourself, and sometimes that means limiting what you tell people.
posted by FencingGal at 7:28 PM on December 5, 2023 [33 favorites]
Being a cancer survivor doesn't give your friend any special knowledge about your cancer. Every cancer patient is different, and she can't predict your future.
I didn't get the impression that your oncologist made a specific prediction. She just told you what the general outlook is - and she was honest about it, and you appreciated that. It sounds like she wouldn't be a good oncologist for your friend, but that's not a problem, since she's not your friend's oncologist.
Your friend is correct that many people outlive their doctor's prognosis, but that doesn't mean your doctor shouldn't be straight with you about what the statistics say.
I would strongly suggest severely limiting what you tell this friend. She obviously has her own shit going on, which is fine, but not something you are currently up to dealing with. I'm a cancer patient as well, and the longer I've dealt with this, the better I've gotten at being very particular about what I tell specific people. There are now maybe three people I'm completely honest with - and one of them is my therapist. There are extremely kind and well meaning people I don't tell anything to anymore just because I don't want to have to deal with their reactions.
You get to protect yourself, and sometimes that means limiting what you tell people.
posted by FencingGal at 7:28 PM on December 5, 2023 [33 favorites]
Also, as a cancer patient, your friend probably knows that you never really "beat" cancer. It can always come back, and a person who has been diagnosed with one cancer usually has a higher risk of getting another. If she had chemo or radiation, that would increase her risk even more.
So your diagnosis is probably making your friend more aware of her own risk, and it sounds like she wants the most positive spin possible for herself. I can't know for sure of course, but I would guess that's why she's having such a strong reaction.
I would guess her reaction has very little to do with you and a whole lot to do with her own fears.
posted by FencingGal at 7:34 PM on December 5, 2023 [6 favorites]
So your diagnosis is probably making your friend more aware of her own risk, and it sounds like she wants the most positive spin possible for herself. I can't know for sure of course, but I would guess that's why she's having such a strong reaction.
I would guess her reaction has very little to do with you and a whole lot to do with her own fears.
posted by FencingGal at 7:34 PM on December 5, 2023 [6 favorites]
Seconding the suggestion above to try Memorial Sloan Kettering Cancer Center for your second opinion instead of Mayo Clinic. It has a great reputation as well. Since you are in DC, getting to New York also would be easier than Minnesota.
posted by gudrun at 7:45 PM on December 5, 2023 [1 favorite]
posted by gudrun at 7:45 PM on December 5, 2023 [1 favorite]
Response by poster: Whew, okay. I've had a chance to calm down a bit and reflect.
First, I think what I'm going to do is just take a complete step back. I'm going to ask my oncologist if she's NCI-certified (if that's such a thing), or if Kaiser is certified by the NCI, and also ask for a referral to another in-network oncologist for a second opinion. If that doesn't seem to go well, I'll then ask for a referral to an external provider that's for sure NCI-"approved" (not sure of the right word).
As for this friend... yes, let me clarify a bit. She's not a close friend, but I reached out to her because we're both Deaf and both had/have colon cancer, and bonus, went to the same high school. I must admit, she could be a bit strong-willed and very in-your-face. When I confided in her I was thinking about discontinuing chemo back in the summer, she was very insistent that I continue and encouraged me profusely. I can see where that's coming from a place of love, but it was a bit much.
The reason I took her advice so deeply is because she's a colon cancer survivor and Deaf. I had to put emphasis on this because that's really the only reason why. If she was a random friend who didn't have the same cancer as me, I'd have written her anger off as upset/sad/grieving and not post an Ask here. But because she had the same cancer as me, I put her on a pedestal.
What she said last night was very... wow. It was a roller coaster. She kept insisting I would not die, that I'm nowhere close to dying, that my oncologist was vastly wrong, and urged I get a second opinion, and said that oncologists sometimes give outdated information, or have their own biases. It was so unexpected and I felt some kind of... hope, but yet, some doubt. It was confusing. She was very nice, but angry obviously. She referred to Colontown (a Facebook colon cancer support group) and said many people there said stuff in direct contrast to my oncologist, and insisted I join Facebook to participate in Colontown.
I think the reason I took this so hard is because I'm very impressionable right now. I'm in a vulnerable position emotionally, and very overwhelmed, and coping. So, her reaction caught me off guard. And I'm seeing that there are conflicted opinions about prognosises being overstated or understated (one person here said that prognosises are vastly over-optimistic, while another said that most prognosises are outlived). It's really hard seeing all the conflicting information out there, and not knowing what to think/expect.
So, yeah, I think I took this to heart (but I also don't think my reaction was outsized, given this huge situation, and I think it's understandable). Again, if this friend was a random person without cancer experience, I would have nodded politely and chalked it up to grief, but I took her more seriously because she was a cancer survivor, and with the same cancer as me. But, yes, FencingGal is right that not everyone has the exact same cancer.
I appreciate all the different recommendations for NCI centers other than Mayo Clinic. Thank you. I'll keep that in mind if I decide to get the outside referral, but I'm going to try Kaiser first instead.
posted by dubious_dude at 7:53 PM on December 5, 2023 [7 favorites]
First, I think what I'm going to do is just take a complete step back. I'm going to ask my oncologist if she's NCI-certified (if that's such a thing), or if Kaiser is certified by the NCI, and also ask for a referral to another in-network oncologist for a second opinion. If that doesn't seem to go well, I'll then ask for a referral to an external provider that's for sure NCI-"approved" (not sure of the right word).
As for this friend... yes, let me clarify a bit. She's not a close friend, but I reached out to her because we're both Deaf and both had/have colon cancer, and bonus, went to the same high school. I must admit, she could be a bit strong-willed and very in-your-face. When I confided in her I was thinking about discontinuing chemo back in the summer, she was very insistent that I continue and encouraged me profusely. I can see where that's coming from a place of love, but it was a bit much.
The reason I took her advice so deeply is because she's a colon cancer survivor and Deaf. I had to put emphasis on this because that's really the only reason why. If she was a random friend who didn't have the same cancer as me, I'd have written her anger off as upset/sad/grieving and not post an Ask here. But because she had the same cancer as me, I put her on a pedestal.
What she said last night was very... wow. It was a roller coaster. She kept insisting I would not die, that I'm nowhere close to dying, that my oncologist was vastly wrong, and urged I get a second opinion, and said that oncologists sometimes give outdated information, or have their own biases. It was so unexpected and I felt some kind of... hope, but yet, some doubt. It was confusing. She was very nice, but angry obviously. She referred to Colontown (a Facebook colon cancer support group) and said many people there said stuff in direct contrast to my oncologist, and insisted I join Facebook to participate in Colontown.
I think the reason I took this so hard is because I'm very impressionable right now. I'm in a vulnerable position emotionally, and very overwhelmed, and coping. So, her reaction caught me off guard. And I'm seeing that there are conflicted opinions about prognosises being overstated or understated (one person here said that prognosises are vastly over-optimistic, while another said that most prognosises are outlived). It's really hard seeing all the conflicting information out there, and not knowing what to think/expect.
So, yeah, I think I took this to heart (but I also don't think my reaction was outsized, given this huge situation, and I think it's understandable). Again, if this friend was a random person without cancer experience, I would have nodded politely and chalked it up to grief, but I took her more seriously because she was a cancer survivor, and with the same cancer as me. But, yes, FencingGal is right that not everyone has the exact same cancer.
I appreciate all the different recommendations for NCI centers other than Mayo Clinic. Thank you. I'll keep that in mind if I decide to get the outside referral, but I'm going to try Kaiser first instead.
posted by dubious_dude at 7:53 PM on December 5, 2023 [7 favorites]
You're getting a lot of good advice, but I'll just add 2 things that I learned while watching my best friend get diagnosed with cancer and then go through 5.5 years of full-time treatment without remission:
#1: people freak out around cancer. This includes cancer survivors! Your friend had a freak-out. You can ignore most or all of it.
#2: You can get a second opinion inside Kaiser and have it be completely different. My friend got a second opinion from a different oncologist in the *literal same office* and it was wildly different (and better and more correct). Inside Kaiser doesn't matter.
Good luck to you, friend.
posted by BlahLaLa at 7:58 PM on December 5, 2023 [8 favorites]
#1: people freak out around cancer. This includes cancer survivors! Your friend had a freak-out. You can ignore most or all of it.
#2: You can get a second opinion inside Kaiser and have it be completely different. My friend got a second opinion from a different oncologist in the *literal same office* and it was wildly different (and better and more correct). Inside Kaiser doesn't matter.
Good luck to you, friend.
posted by BlahLaLa at 7:58 PM on December 5, 2023 [8 favorites]
I think I've posted this for you before, but just in case, this page shows all of the NCI-designated cancer centers in the US. It's not what insurance you have - it's what hospital you are being treated at. Doctors at NCI centers are also researchers and are much more likely to be up on the latest treatments. A study of my cancer showed that patients who were treated at NCI centers lived longer.
So in D.C., there is one NCI Cancer Center, and it's the Georgetown Lombardi Comprehensive Cancer Center.
I've gotten a second opinion at MSK, and they were great about figuring out the insurance. My insurance company people had told me that a second opinion at MSK would not be covered, so I assumed I would have to pay out of pocket, but that turned out to be incorrect. The MSK people were able to get it covered.
A good oncologist will be pleased that you are getting a second opinion.
(BTW, I think you may be meaning to quote me when you say that someone said most prognoses are outlived. That is not what I said. I said that many people outlive their prognosis. That is not the same.)
posted by FencingGal at 8:15 PM on December 5, 2023 [8 favorites]
So in D.C., there is one NCI Cancer Center, and it's the Georgetown Lombardi Comprehensive Cancer Center.
I've gotten a second opinion at MSK, and they were great about figuring out the insurance. My insurance company people had told me that a second opinion at MSK would not be covered, so I assumed I would have to pay out of pocket, but that turned out to be incorrect. The MSK people were able to get it covered.
A good oncologist will be pleased that you are getting a second opinion.
(BTW, I think you may be meaning to quote me when you say that someone said most prognoses are outlived. That is not what I said. I said that many people outlive their prognosis. That is not the same.)
posted by FencingGal at 8:15 PM on December 5, 2023 [8 favorites]
It would be too complicated. Their system is too convenient for me—everything in one place, message portal, they have my history, etc.
I would strongly urge you to reconsider this stance. I work in an academic medical center, doing cancer clinical trials. I have also had cancer while having Kaiser as my insurance provider. Kaiser is great if there’s nothing wrong with you, or your issues fall within the fat part of the statistical curve. Kaiser does not do cancer well. If, at some point, you want to take part in a clinical trial to get access to cutting edge treatments, it will be hell trying to get Kaiser to approve it, and you will likely be denied. A researcher I know had to relocate her father to live with her, to allow him to change his insurance outside of open enrollment due to Kaiser refusing to even biopsy his cancer (spoiler alert, they misdiagnosed it! He’s doing very well now with proper treatment!).
Listen, it’s your life, so do what you want. But also, it’s your life. This is no longer a matter of convenience, but one of survival, and of time remaining. What you’re experiencing now, trying to get an external referral, is just the tip of the iceberg. It will only get so, so much worse. If it were me, I would be moving hell and earth to change insurance companies right now. Like, I’d be looking for a new job just to get another crack at open enrollment.
posted by bluloo at 8:18 PM on December 5, 2023 [14 favorites]
I would strongly urge you to reconsider this stance. I work in an academic medical center, doing cancer clinical trials. I have also had cancer while having Kaiser as my insurance provider. Kaiser is great if there’s nothing wrong with you, or your issues fall within the fat part of the statistical curve. Kaiser does not do cancer well. If, at some point, you want to take part in a clinical trial to get access to cutting edge treatments, it will be hell trying to get Kaiser to approve it, and you will likely be denied. A researcher I know had to relocate her father to live with her, to allow him to change his insurance outside of open enrollment due to Kaiser refusing to even biopsy his cancer (spoiler alert, they misdiagnosed it! He’s doing very well now with proper treatment!).
Listen, it’s your life, so do what you want. But also, it’s your life. This is no longer a matter of convenience, but one of survival, and of time remaining. What you’re experiencing now, trying to get an external referral, is just the tip of the iceberg. It will only get so, so much worse. If it were me, I would be moving hell and earth to change insurance companies right now. Like, I’d be looking for a new job just to get another crack at open enrollment.
posted by bluloo at 8:18 PM on December 5, 2023 [14 favorites]
Medical records and transmitting them through various forms of communication are a behind the times when it comes to the law. One of the reasons the Mayo Clinic might not be able accommodate your email request is that legally, email is not considered secure enough to send patient information over the wire.
(But faxes somehow are OK, at least from a legal standpoint, which is why hospitals and doctor's offices will be the last users of fax machines standing.)
In any case, this would apply to a great many number of medical providers, not just the Mayo folks.
posted by fifteen schnitzengruben is my limit at 9:43 PM on December 5, 2023 [6 favorites]
(But faxes somehow are OK, at least from a legal standpoint, which is why hospitals and doctor's offices will be the last users of fax machines standing.)
In any case, this would apply to a great many number of medical providers, not just the Mayo folks.
posted by fifteen schnitzengruben is my limit at 9:43 PM on December 5, 2023 [6 favorites]
With your friend (especially with the knowledge that this isn’t a close friend but may be someone you have more contact with going forward through this support group and shared experience) it might be good to have a script ready to go to deflect this overwhelming response. It could be something along the lines of
‘I appreciate your perspective and it’s encouraging to hear what happened in your case. I am seeking a second opinion to get a better understanding of my prognosis, but at the moment I’m struggling to come to terms with the diagnosis and I’m not finding it helpful to get angry with my doctors, so can we change the subject for a while? It would be good to take my mind off things.’
posted by chives at 2:47 AM on December 6, 2023 [4 favorites]
‘I appreciate your perspective and it’s encouraging to hear what happened in your case. I am seeking a second opinion to get a better understanding of my prognosis, but at the moment I’m struggling to come to terms with the diagnosis and I’m not finding it helpful to get angry with my doctors, so can we change the subject for a while? It would be good to take my mind off things.’
posted by chives at 2:47 AM on December 6, 2023 [4 favorites]
I have a couple observations to your question about your friends response. These are based on walking side by side with a friend during her cancer diagnosis and treatment -
1) The "cancer survivor" culture is not for everyone. You do not need to fight. It is okay to just accept what your doctor is telling you. Even once she was in the terminal phase of her illness, some people were telling my friend she just needed to fight harder. Someone told her she did not, in fact, need to do that and it was liberating to her and helped her have peace in her final days.
2) When you have cancer, an astonishing number of UNQUALIFIED people will come out of the woodwork to tell you how to treat your cancer. It is helpful to make a decision on whose advice to trust and to mentally discard all other advice so that you can focus your mind on your treatment and not have to spend time batting away lengthy emails on the value of juicing or thinking positive thoughts or whatever.
It sounds like your friend is steeped in the survivor culture and may be personally offended that you do not see things the same as her. You don't have to. Also, you might want to ask your doctor or care team for some useful phrases to deflect unhelpful treatment advice.
posted by eleslie at 3:42 AM on December 6, 2023 [10 favorites]
1) The "cancer survivor" culture is not for everyone. You do not need to fight. It is okay to just accept what your doctor is telling you. Even once she was in the terminal phase of her illness, some people were telling my friend she just needed to fight harder. Someone told her she did not, in fact, need to do that and it was liberating to her and helped her have peace in her final days.
2) When you have cancer, an astonishing number of UNQUALIFIED people will come out of the woodwork to tell you how to treat your cancer. It is helpful to make a decision on whose advice to trust and to mentally discard all other advice so that you can focus your mind on your treatment and not have to spend time batting away lengthy emails on the value of juicing or thinking positive thoughts or whatever.
It sounds like your friend is steeped in the survivor culture and may be personally offended that you do not see things the same as her. You don't have to. Also, you might want to ask your doctor or care team for some useful phrases to deflect unhelpful treatment advice.
posted by eleslie at 3:42 AM on December 6, 2023 [10 favorites]
Oh, dubious_dude. I am sorry about the prognosis. Fuck cancer.
What are you hoping to get out of a second opinion? They might agree with your oncologist; they might disagree with your oncologist. But will you do anything differently depending on what their answer is?
posted by kinddieserzeit at 4:12 AM on December 6, 2023 [5 favorites]
What are you hoping to get out of a second opinion? They might agree with your oncologist; they might disagree with your oncologist. But will you do anything differently depending on what their answer is?
posted by kinddieserzeit at 4:12 AM on December 6, 2023 [5 favorites]
There is an issue - and we see it a lot on MetaFilter - where people confuse an expertise and experience.
Your friend has an experience.
Your doctor has expertise.
They are not equal.
posted by NotMyselfRightNow at 4:19 AM on December 6, 2023 [19 favorites]
Your friend has an experience.
Your doctor has expertise.
They are not equal.
posted by NotMyselfRightNow at 4:19 AM on December 6, 2023 [19 favorites]
What are you hoping to get out of a second opinion? They might agree with your oncologist; they might disagree with your oncologist. But will you do anything differently depending on what their answer is?
Seeking a second opinion isn't just finding out how long you're expected to live. The second doc may suggest different treatment options or even a clinical trial. There's no way to anticipate what you'll do with info from a second opinion because there's no way to know what the doc will say.
I know someone whose father got two good years from treatment recommended by a second doc after the first doc said there was nothing more to be done.
posted by FencingGal at 6:11 AM on December 6, 2023 [9 favorites]
Seeking a second opinion isn't just finding out how long you're expected to live. The second doc may suggest different treatment options or even a clinical trial. There's no way to anticipate what you'll do with info from a second opinion because there's no way to know what the doc will say.
I know someone whose father got two good years from treatment recommended by a second doc after the first doc said there was nothing more to be done.
posted by FencingGal at 6:11 AM on December 6, 2023 [9 favorites]
I'm in a group for people with my chronic condition. A lot of people in it give really bad advice. The moderators shut down obvious nonsense (like antivax stuff), but it's a peer-group space and some people are just ill-informed, in denial, stuck on their hobby horses, etc. Many more of them don't seem to understand that what makes sense for them -- due to their own symptoms or co-morbid conditions -- might not be widely applicable to others. Some of them are also just kooks, really.
Having the same condition does not make someone an expert on your treatment. It's good to get clear about this now, because as others have said, you're going to get bombarded with suggestions and recommendations and pronouncements from people who are not qualified to make them, and you need to either learn to shut them down / ignore them or else how to filter them and take the ones that might make sense to someone with better knowledge (your doctor, reputable websites, etc.).
It makes sense to get a second opinion for treatment options, absolutely. (And I would agree that Kaiser makes that difficult -- their entire model is built on keeping everything in house.) But no doctor is going to be able to tell you exactly how long you're going to live; the best they can do is give you odds. Your friend's underlying objection seems based on an incorrect assumption about what doctors can do or should ethically promise.
posted by lapis at 6:52 AM on December 6, 2023 [3 favorites]
Having the same condition does not make someone an expert on your treatment. It's good to get clear about this now, because as others have said, you're going to get bombarded with suggestions and recommendations and pronouncements from people who are not qualified to make them, and you need to either learn to shut them down / ignore them or else how to filter them and take the ones that might make sense to someone with better knowledge (your doctor, reputable websites, etc.).
It makes sense to get a second opinion for treatment options, absolutely. (And I would agree that Kaiser makes that difficult -- their entire model is built on keeping everything in house.) But no doctor is going to be able to tell you exactly how long you're going to live; the best they can do is give you odds. Your friend's underlying objection seems based on an incorrect assumption about what doctors can do or should ethically promise.
posted by lapis at 6:52 AM on December 6, 2023 [3 favorites]
Your friend has significant trauma around this issue. Totally earned! But still trauma. And there's probably extra layers to it because of the vulnerability of being Deaf in a high-stakes situation where you don't always have fantastic control over what is communicated to you and how. What you got was the full firehose of her being triggered.
She didn't give you a prepared presentation, thoughtfully considered. You do not have to give her words the same weight you would in that kind of situation. You do not have to take every word literally, because a great deal of it is hyperbole.
But this is also how people react when they are scared, and it sounds like this person was interpreting you as giving up, in ways that particularly hit home for her. That's trauma coming out as well, but it is also colored with concern for you. That doesn't make any of her information correct, still.
Also, whatever people say, the landscape of colon cancer treatment is changing week-by-week. Prognoses issued to someone six months ago may no longer apply to someone with the same criteria today, and prognoses from several years ago might as well be for a different organ. Comparing your situation to anybody else's is a crapshoot - take what you find useful, shrug at the rest.
I hope you get a response from Mayo, and I am sorry for your accommodation frustrations, but you may find a lot of hands are tied by HIPAA restrictions around communication to the point they cannot say certain things or receive certain information via email. The consequences for HIPAA violations are much more significant than for ADA violations, and that sucks and it reduces quality of care. For what it's worth, if you want to just try the Contact Us form to see if you get roadblocked there too, Froedtert Oncology has a Second Opinion Program. My friend is being treated at Froedtert after extensive research, they have had an excellent experience with the team there.
posted by Lyn Never at 7:38 AM on December 6, 2023 [4 favorites]
She didn't give you a prepared presentation, thoughtfully considered. You do not have to give her words the same weight you would in that kind of situation. You do not have to take every word literally, because a great deal of it is hyperbole.
But this is also how people react when they are scared, and it sounds like this person was interpreting you as giving up, in ways that particularly hit home for her. That's trauma coming out as well, but it is also colored with concern for you. That doesn't make any of her information correct, still.
Also, whatever people say, the landscape of colon cancer treatment is changing week-by-week. Prognoses issued to someone six months ago may no longer apply to someone with the same criteria today, and prognoses from several years ago might as well be for a different organ. Comparing your situation to anybody else's is a crapshoot - take what you find useful, shrug at the rest.
I hope you get a response from Mayo, and I am sorry for your accommodation frustrations, but you may find a lot of hands are tied by HIPAA restrictions around communication to the point they cannot say certain things or receive certain information via email. The consequences for HIPAA violations are much more significant than for ADA violations, and that sucks and it reduces quality of care. For what it's worth, if you want to just try the Contact Us form to see if you get roadblocked there too, Froedtert Oncology has a Second Opinion Program. My friend is being treated at Froedtert after extensive research, they have had an excellent experience with the team there.
posted by Lyn Never at 7:38 AM on December 6, 2023 [4 favorites]
The benefit of seeking treatment at an NCI-designated comprehensive cancer center is that in addition to treating patients, they also conduct research, giving patients access to the next generation of therapies. I encourage you to look at clinical trials dot gov to see if you may be a match. Have you connected with the Colorectal Cancer Alliance? They may be able to assist.
posted by kat518 at 6:21 PM on December 6, 2023 [2 favorites]
posted by kat518 at 6:21 PM on December 6, 2023 [2 favorites]
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"I want to explain this via email" - I meant "I explained this via email, but got nowhere." Sorry. (for the Mayo Clinic situation)
posted by dubious_dude at 5:20 PM on December 5, 2023