› Forums › General Melanoma Community › Have you ever fired your oncologist?
- This topic has 12 replies, 4 voices, and was last updated 9 years, 5 months ago by
kalisama.
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- November 13, 2014 at 1:15 pm
I am so frustrated at this point. I feel as though my onc is fighting me on my treatment plan and that we are working against each other instead of in tandum, with each other.
I live in a rural area, 8 hours round trip to see my oncologist, plus hotel stays, etc etc.
I feel that I am being forced in to a 3rd Yervoy treatment despite display of primarily skin related side effects. As some of you know, I've been trying to get to Keytruda since its approval. I'm aware some of this is FDA and some of this is my onc's near religious belief in Yervoy.
I've also been trying to get a referral to a neurologist from him as disease leans towards brain and CNS, LMD, with an occasional rogue muscle or breast met . I have very little confidence in his ability to treat CNS diseases, while this is a huge part of my treatment, I just don't think he's up on this. One month ago he said he would put this referral in motion. Now he's telling me it will be at least 3 months.
I see him this Tuesday. I'm at a loss, and am scheduled for Yervoy infusion that I don't want. I will finally be getting images on Monday, so I will be going in to Tuesday's appointment with more information than I've had in quite a while.
Is there a question in here? yes, any advice on how to approach your primary onc when you don't feel like they are on your side? have you ever fired a primary physician? he works very intimately with my radiation oncologist who i adore, and am nervous about jeopardizing that relationship. If I didn't live so far from this level of medical support, it would probably be a lot easier for me to move on. This onc has been treating me since April 2013 when I was admitted to ICU with golfball size tumors in my brain.
Any insights or personal experiences, appreciated as always.
bless,
kali
- Replies
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- November 13, 2014 at 1:37 pm
Yes I have fired my oncologist but my reason was that he would not answer any questions at all. It was difficult – I was first told by the patient representative that the hospital was under no obligation to treat me and I was welcome to go elsewhere. The second time I complained, I did not ask for another oncologist, she told me that I needed a new one and assigned me to someone who answers everything completely and does not regard me as an idiot and a nuisance.
Not to put myself into something that is not my business, but what kind of hospital are you going to? The FDA has only approved Keytruda in melanoma for people who have failed treatment with Yervoy. The only way to get Keytruda without the Yervoy treatment first is to be part of a clinical trial. I don't know what the indications are for CNS but it is worth a look. If your hospital does not conduct clinical trials, maybe it is the hospital as well as the oncologist that you need to change.
There are many anti pd-1 trials going on as well a combination studies. Every major cancer center website has a number for people to call to ask about clinical trials.
Good luck to you.
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- November 13, 2014 at 1:37 pm
Yes I have fired my oncologist but my reason was that he would not answer any questions at all. It was difficult – I was first told by the patient representative that the hospital was under no obligation to treat me and I was welcome to go elsewhere. The second time I complained, I did not ask for another oncologist, she told me that I needed a new one and assigned me to someone who answers everything completely and does not regard me as an idiot and a nuisance.
Not to put myself into something that is not my business, but what kind of hospital are you going to? The FDA has only approved Keytruda in melanoma for people who have failed treatment with Yervoy. The only way to get Keytruda without the Yervoy treatment first is to be part of a clinical trial. I don't know what the indications are for CNS but it is worth a look. If your hospital does not conduct clinical trials, maybe it is the hospital as well as the oncologist that you need to change.
There are many anti pd-1 trials going on as well a combination studies. Every major cancer center website has a number for people to call to ask about clinical trials.
Good luck to you.
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- November 13, 2014 at 1:37 pm
Yes I have fired my oncologist but my reason was that he would not answer any questions at all. It was difficult – I was first told by the patient representative that the hospital was under no obligation to treat me and I was welcome to go elsewhere. The second time I complained, I did not ask for another oncologist, she told me that I needed a new one and assigned me to someone who answers everything completely and does not regard me as an idiot and a nuisance.
Not to put myself into something that is not my business, but what kind of hospital are you going to? The FDA has only approved Keytruda in melanoma for people who have failed treatment with Yervoy. The only way to get Keytruda without the Yervoy treatment first is to be part of a clinical trial. I don't know what the indications are for CNS but it is worth a look. If your hospital does not conduct clinical trials, maybe it is the hospital as well as the oncologist that you need to change.
There are many anti pd-1 trials going on as well a combination studies. Every major cancer center website has a number for people to call to ask about clinical trials.
Good luck to you.
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- November 13, 2014 at 4:08 pm
Sure I have fired a couple of doctors already.
You shouldnt really work with someone you are not comfortable with unless you absolutely have no other options.
If you have other options change doctors simple as that. Happens all the time. It is your life and your health you cant be working with someone you are not comfortable with as this will jeopardise your treatment and recovery.
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- November 14, 2014 at 7:02 am
Yes! We wasted 2 precious months with the 1st onc my husband was assigned (Kaiser). With this HMO a patient can ask for a 2nd/3rd opinion, which he did, and the 1st onc is required to honor request. 2nd onc got is good, works with us. Don't know your insurance situation/options. With all the mets you have, you should be treated at a melanoma treatment center. If you trust your radiation onc and s/he is a competent professional you should be able to confide your current dissatisfactory relationship and request advice, such as "whom would s/he see, where go if had your metatesized situation". My husband has CNS malig mel in his cervical spine, nowhere else. He can't take Yervoy, no place for the tumor to expand w/o serious consequences. We got a referral to UCSF, a top melanoma ctr in our area, and he was going to enter a clinical trial with arms that inc Yervoy, PD-1 (now Keytruda) but, because early approval of Keytruda, he was able to start 2 mo ago with Kaiser. Only side effect so far: mild fatigue. A reasonable onc would take you off Yervoy at this point, and start you on Keytruda. A recent link someone posted on the Board was that PD-1 soon will be the 1st line treatment of choice: quicker response, lower SEs, better response rate.
I hope you can work out something to be managed at a melanoma treatment center and get the care you deserve with knowledgeable docs you can trust. You can Google 'top melanoma treatment centers" and find one closest to you, call them. You can talk with/email the MRF staff for advice.
Keep fighting. You know what's best for you. Wishing you victory. A.L.
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- November 14, 2014 at 7:02 am
Yes! We wasted 2 precious months with the 1st onc my husband was assigned (Kaiser). With this HMO a patient can ask for a 2nd/3rd opinion, which he did, and the 1st onc is required to honor request. 2nd onc got is good, works with us. Don't know your insurance situation/options. With all the mets you have, you should be treated at a melanoma treatment center. If you trust your radiation onc and s/he is a competent professional you should be able to confide your current dissatisfactory relationship and request advice, such as "whom would s/he see, where go if had your metatesized situation". My husband has CNS malig mel in his cervical spine, nowhere else. He can't take Yervoy, no place for the tumor to expand w/o serious consequences. We got a referral to UCSF, a top melanoma ctr in our area, and he was going to enter a clinical trial with arms that inc Yervoy, PD-1 (now Keytruda) but, because early approval of Keytruda, he was able to start 2 mo ago with Kaiser. Only side effect so far: mild fatigue. A reasonable onc would take you off Yervoy at this point, and start you on Keytruda. A recent link someone posted on the Board was that PD-1 soon will be the 1st line treatment of choice: quicker response, lower SEs, better response rate.
I hope you can work out something to be managed at a melanoma treatment center and get the care you deserve with knowledgeable docs you can trust. You can Google 'top melanoma treatment centers" and find one closest to you, call them. You can talk with/email the MRF staff for advice.
Keep fighting. You know what's best for you. Wishing you victory. A.L.
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- November 14, 2014 at 7:02 am
Yes! We wasted 2 precious months with the 1st onc my husband was assigned (Kaiser). With this HMO a patient can ask for a 2nd/3rd opinion, which he did, and the 1st onc is required to honor request. 2nd onc got is good, works with us. Don't know your insurance situation/options. With all the mets you have, you should be treated at a melanoma treatment center. If you trust your radiation onc and s/he is a competent professional you should be able to confide your current dissatisfactory relationship and request advice, such as "whom would s/he see, where go if had your metatesized situation". My husband has CNS malig mel in his cervical spine, nowhere else. He can't take Yervoy, no place for the tumor to expand w/o serious consequences. We got a referral to UCSF, a top melanoma ctr in our area, and he was going to enter a clinical trial with arms that inc Yervoy, PD-1 (now Keytruda) but, because early approval of Keytruda, he was able to start 2 mo ago with Kaiser. Only side effect so far: mild fatigue. A reasonable onc would take you off Yervoy at this point, and start you on Keytruda. A recent link someone posted on the Board was that PD-1 soon will be the 1st line treatment of choice: quicker response, lower SEs, better response rate.
I hope you can work out something to be managed at a melanoma treatment center and get the care you deserve with knowledgeable docs you can trust. You can Google 'top melanoma treatment centers" and find one closest to you, call them. You can talk with/email the MRF staff for advice.
Keep fighting. You know what's best for you. Wishing you victory. A.L.
-
- November 13, 2014 at 4:08 pm
Sure I have fired a couple of doctors already.
You shouldnt really work with someone you are not comfortable with unless you absolutely have no other options.
If you have other options change doctors simple as that. Happens all the time. It is your life and your health you cant be working with someone you are not comfortable with as this will jeopardise your treatment and recovery.
-
- November 13, 2014 at 4:08 pm
Sure I have fired a couple of doctors already.
You shouldnt really work with someone you are not comfortable with unless you absolutely have no other options.
If you have other options change doctors simple as that. Happens all the time. It is your life and your health you cant be working with someone you are not comfortable with as this will jeopardise your treatment and recovery.
-
- November 14, 2014 at 12:02 pm
thank you for the perspectives everyone. very validating to see that i may not be accessing the best care that is available to me. i'm a medicaid patient which does limit me to some degree.
i will certainly take the advice of asking my radiation onc who he would see, that's simply brilliant. he does work closely with my primary oncologist, but does not make this any less valid of a question.
they are both in private practice. i've even had my primary onc say he has to double book my appointments because i'm a medicaid patient so he does not have the luxury of slicing out time for me. probably should have walked out in that moment. it is my understanding that i have met the keytruda requirements, but until monday's imaging i do not believe we have anything empirical to go on other than my side effects which onc does not see as severe enough. until i develop colitis, the skin irritations in his eyes aren't considered severe enough.
again thank you as always for your wisdom.
bless,
kali -
- November 14, 2014 at 12:02 pm
thank you for the perspectives everyone. very validating to see that i may not be accessing the best care that is available to me. i'm a medicaid patient which does limit me to some degree.
i will certainly take the advice of asking my radiation onc who he would see, that's simply brilliant. he does work closely with my primary oncologist, but does not make this any less valid of a question.
they are both in private practice. i've even had my primary onc say he has to double book my appointments because i'm a medicaid patient so he does not have the luxury of slicing out time for me. probably should have walked out in that moment. it is my understanding that i have met the keytruda requirements, but until monday's imaging i do not believe we have anything empirical to go on other than my side effects which onc does not see as severe enough. until i develop colitis, the skin irritations in his eyes aren't considered severe enough.
again thank you as always for your wisdom.
bless,
kali -
- November 14, 2014 at 12:02 pm
thank you for the perspectives everyone. very validating to see that i may not be accessing the best care that is available to me. i'm a medicaid patient which does limit me to some degree.
i will certainly take the advice of asking my radiation onc who he would see, that's simply brilliant. he does work closely with my primary oncologist, but does not make this any less valid of a question.
they are both in private practice. i've even had my primary onc say he has to double book my appointments because i'm a medicaid patient so he does not have the luxury of slicing out time for me. probably should have walked out in that moment. it is my understanding that i have met the keytruda requirements, but until monday's imaging i do not believe we have anything empirical to go on other than my side effects which onc does not see as severe enough. until i develop colitis, the skin irritations in his eyes aren't considered severe enough.
again thank you as always for your wisdom.
bless,
kali
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