I've been searching through the forums and am shocked how many people have had bad experiences with oncologists. And it makes me terribly sad. I'm no lightweight, and the behavior is wearing me down. I can't imagine what this is like for those who don't have a strong support system like I am blessed with.
I had a long spiel in my introduction,
"Coming late to the party" (Feb 3, 2017)
about my rough struggle to diagnosis. In the midst of that, both a radiologist and the local hematologist-oncologist were very dismissive of my pain and weakness. Turns out I have kappa light chain multiple myeloma with extensive bone damage and activity.
I now am under the care of Beacon Medical Advisor Dr. Jason Valent at the Cleveland Clinic, with whom I am very pleased. The treatment plan is in place. I will be treated with Revlimid, Velcade, and dexamethasone, along with Zometa, to start next week. I will receive my treatments at a local oncology clinic and will have monthly visits at the Cleveland Clinic (1 1/2 hours away). Dr. Valent assured me that would he be point man.
Yesterday I had a visit to the local oncology clinic for scheduling and a follow up on my bone survey. We thought heading into this appointment that the attitude would be improved. It was not.
The local oncologist seemed annoyed with questions as to what pain level I should try maintain (with meds I am at 4-5 with spikes) and concerned as to what level I should try to maintain after Zometa. He said that I will probably need to get a pin in my left arm very soon and they were scheduling an MRI. He was dismissive about side effects of treatment because I am on a nontoxic mix and should only have a day or so of flu-like symptoms.
And the staff I dealt with were again dismissive and abrupt with me. They speak nicely enough, it's just this ... Well, I don't know how to explain it. My daughter was furious and thinks that none of them know what is wrong with me and they're just judging by my outer appearance that I am not really ill.
We talked it over and I feel we should go ahead with this 1st round and see how it goes. We do need to have someone locally in case of emergency, and need to get this started. The last radiology report noted increases in many of the lesions. From here on out we're keeping notes on every visit.
I guess mainly here I am asking if this is normal. If you were me, would you try to make it through the 3 visits for round one of treatment and then decide on a new local? Or start looking now? This is supposed to be the oncology clinic in the area, and he a fantastic oncologist.
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judimcbry - Name: Judi
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Jan 2017 delayed
- Age at diagnosis: 52
Re: Not sure I should continue with my local oncologist
I believe you need to have full confidence in your entire team. I would suggest that you have discussion with your local oncologist and express your feelings. If he is unwilling to do that or you are not satisfied with the result; then ask Dr. Valent if he could recommend a local oncologist in your area that he has good working relationship with. It will depend on how many oncologists exist in your area. If you live 1 1/2 hours from Cleveland, it may be that you are in a small city that does not have a lot of local options.
Good Luck.
Good Luck.
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: Not sure I should continue with my local oncologist
I live in the Youngstown area, so there's a moderate amount of oncologists.
I wasn't referred to him my PCP, I was supposed to see one of his partners. But this was mid December, and she was leaving in a few weeks for an extended vacation and they couldn't get me an appointment for at least 6 weeks. The irony being he took that long to diagnose me anyhow. Please understand that I am not bitter about how long it took to diagnose me. Being told by the surgeon that it was definitely multiple myeloma was a relief at that point. I had a long time of being treated like a drug seeking hypochondriac. Maybe, just maybe, I will be able to pave the road so the next person like me is heard.
The local doctor is very highly rated by other patients, and Dr. Valent has confidence in him. But in early January, he read a certain radiologist's report and repeated that man's words to me with conviction. "We're not sure this isn't just degenerative disk disease." It could be that he now feels awkward or uncomfortable about me? And his staff is only picking up on his demeanor? I did express frustration with them when it took the 10 days to schedule a couple of tests.
I need to pull up my big girl panties, be an adult, and have a real conversation with him. Thank you once again for excellent advice. I can handle abrupt staff, I just need to know that I can trust him if there's an emergency and he has to make a decision.
This is the only place I have found where everyone knows what I am feeling and understands.
I wasn't referred to him my PCP, I was supposed to see one of his partners. But this was mid December, and she was leaving in a few weeks for an extended vacation and they couldn't get me an appointment for at least 6 weeks. The irony being he took that long to diagnose me anyhow. Please understand that I am not bitter about how long it took to diagnose me. Being told by the surgeon that it was definitely multiple myeloma was a relief at that point. I had a long time of being treated like a drug seeking hypochondriac. Maybe, just maybe, I will be able to pave the road so the next person like me is heard.
The local doctor is very highly rated by other patients, and Dr. Valent has confidence in him. But in early January, he read a certain radiologist's report and repeated that man's words to me with conviction. "We're not sure this isn't just degenerative disk disease." It could be that he now feels awkward or uncomfortable about me? And his staff is only picking up on his demeanor? I did express frustration with them when it took the 10 days to schedule a couple of tests.
I need to pull up my big girl panties, be an adult, and have a real conversation with him. Thank you once again for excellent advice. I can handle abrupt staff, I just need to know that I can trust him if there's an emergency and he has to make a decision.
This is the only place I have found where everyone knows what I am feeling and understands.
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judimcbry - Name: Judi
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Jan 2017 delayed
- Age at diagnosis: 52
Re: Not sure I should continue with my local oncologist
Good Luck Judi. I grew up in the Cleveland area and our family had a small cabin on Lake Milton near Youngstown, where in my teens we spent many summer weekends boating and water skiing.
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: Not sure I should continue with my local oncologist
Thank you Ron. I happen to be a Jackson-Milton graduate. 
I'm preparing for my new normal, one step at a time, and this is just one of many decisions I need to make wisely. I have the unfortunate experience of already having extensive damage and active disease at initial staging. This has great effect on my plans and future.
God has seen me through everything to this point and I am sure will carry me the rest of the way home.
I'm preparing for my new normal, one step at a time, and this is just one of many decisions I need to make wisely. I have the unfortunate experience of already having extensive damage and active disease at initial staging. This has great effect on my plans and future.
God has seen me through everything to this point and I am sure will carry me the rest of the way home.
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judimcbry - Name: Judi
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Jan 2017 delayed
- Age at diagnosis: 52
Re: Not sure I should continue with my local oncologist
My appointment with the local oncologist today was much better and I feel more confident with him. Unfortunately, the staff had some issues, especially the lab employees there. It took 3 employees 20 minutes to do my blood work because they were too busy discussing that the one had just received a bonus! Incredibly unprofessional.
I'll be posting an update of my FISH results and summary of my MRI results in my introductory thread here in the forum, "Coming late to the party".
I'll be posting an update of my FISH results and summary of my MRI results in my introductory thread here in the forum, "Coming late to the party".
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judimcbry - Name: Judi
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Jan 2017 delayed
- Age at diagnosis: 52
6 posts
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