The center where my husband receives care seems to always be dropping the ball. They push things off and tell him to contact his GP about what are clearly myeloma-related issues.
We decided to try and seek out a "specialist" at a bigger hospital, who barely seemed to have looked at my husbands records. She gave the same wishy-washy maintenance advice we get from our local oncologist.
I feel like none of the doctors we see take anytime to really look at my husband on an individual basis or give a plan of action they feel confident will be the right treatment plan.
Is it unrealistic to expect better care and guidance?
They act like myeloma treatment is just a guessing game!!
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blair77 - Who do you know with myeloma?: My husband
- When were you/they diagnosed?: April 2013
- Age at diagnosis: 43
Re: Getting a poor level of care - are we unrealistic?
Sounds like you have a bad oncologist. I don't think its unusual to move around between oncologist until you find the one that works for you. Have you checked with friends etc. who may know who is the best local oncologist? That's how I approached my selection, via asking advice from others who may have used a oncologist recently.
My doctor admits that the number of myeloma patients he see's is very limited and suggested I seek out a specialist to work in concert with us to treat my disease. As a general rule, my local guy follows the advice of the specialist. And, yes, I had a tough time getting time from the specialist, as they are very busy guys. I see the specialist three times per year to track my progress and make recommendations on treatment plans laid out by my local oncologist.
It is true that the oncologist is specific to the cancer and not to be considered a GP. My local oncologist refers me to the GP for anything outside the narrow boundary of the disease (as they see it).
Seek out a new oncologist that you feel comfortable with -- it's going to be long term relationship!
My doctor admits that the number of myeloma patients he see's is very limited and suggested I seek out a specialist to work in concert with us to treat my disease. As a general rule, my local guy follows the advice of the specialist. And, yes, I had a tough time getting time from the specialist, as they are very busy guys. I see the specialist three times per year to track my progress and make recommendations on treatment plans laid out by my local oncologist.
It is true that the oncologist is specific to the cancer and not to be considered a GP. My local oncologist refers me to the GP for anything outside the narrow boundary of the disease (as they see it).
Seek out a new oncologist that you feel comfortable with -- it's going to be long term relationship!
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JBarnes - Name: Jerry Barnes
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Aug 17, 2012
- Age at diagnosis: 54
Re: Getting a poor level of care - are we unrealistic?
I totally agree with Jerry. Perhaps I've been lucky, but I would give my GP, local oncologist and 2 out of the 3 multiple myeloma specialists I've seen over the past eighteen months 5 stars. I give them this rating due to the amount of time, compassion and diligence they have taken in evaluating my situation, talking to me, and being available for follow-up contact. For me, I'd love to have just about any one of these folks be my close friend and I would certainly welcome them to my Thanksgiving dinner table.
Find somebody else.
Find somebody else.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Getting a poor level of care - are we unrealistic?
I'm afraid I have a different view. You don't give us any examples and only allow us to assume your diagnosis is accurate.
Could you be a little more specific? Many of us have years of experience fighting this disease and I believe you will get a better feedback if we knew what you consider "clearly myeloma-related issues".
I have had two major issues that were myeloma related – kidney and bone fractures – that were passed on to specialist in those fields.
Could you be a little more specific? Many of us have years of experience fighting this disease and I believe you will get a better feedback if we knew what you consider "clearly myeloma-related issues".
I have had two major issues that were myeloma related – kidney and bone fractures – that were passed on to specialist in those fields.
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Wayne K - Name: Wayne
- Who do you know with myeloma?: Myself, my sister who passed in '95
- When were you/they diagnosed?: 03/09
- Age at diagnosis: 70
Re: Getting a poor level of care - are we unrealistic?
Hi Blair 77,
Are you currently working with both your myeloma specialist and your GP about your husband's health issues? My GPs have also reviewed any issues with me, especially in regards to back pain I had, minor infections, annual check ups and the like. I recently changed GPs, since my previous one retired from her practise. I was pleased to find out that my new doctor has several other patients with myeloma, and thus has an idea of what to look out for. I think that I was the first myeloma patient my previous doctor had, and that is one reason why I was slow getting a diagnosis.
Also, and sorry to go on about this, from my GP I am still getting routine screening tests for other cancers too. I think that is really important since we worry about secondary cancers.
So in my case the oncologist and the GP are working together to help keep me as healthy as possible! Hope that helps.
That's not to say that you might not be unhappy with your oncologist, but they are very busy specialists and may not have time for issues that the family practise doc or other specialists can look after.
Are you currently working with both your myeloma specialist and your GP about your husband's health issues? My GPs have also reviewed any issues with me, especially in regards to back pain I had, minor infections, annual check ups and the like. I recently changed GPs, since my previous one retired from her practise. I was pleased to find out that my new doctor has several other patients with myeloma, and thus has an idea of what to look out for. I think that I was the first myeloma patient my previous doctor had, and that is one reason why I was slow getting a diagnosis.
Also, and sorry to go on about this, from my GP I am still getting routine screening tests for other cancers too. I think that is really important since we worry about secondary cancers.
So in my case the oncologist and the GP are working together to help keep me as healthy as possible! Hope that helps.
That's not to say that you might not be unhappy with your oncologist, but they are very busy specialists and may not have time for issues that the family practise doc or other specialists can look after.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
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