Update post #33: Has anyone requested a second opinion for a medical concern?

[shh]

Background…I saw a specialist this week, who believes I have a “rare specific condition”. The Dr. believes the only way to confirm is with a very invasive biopsy. I had a list of questions, including, why isn’t the diagnosis and disease progression being done through imaging techniques. He believes the only way to get a true result is with the biopsy. He currently has 4 patients with this issue, and has had about 40 in his 40-year career.

The dr also did not like I had googled tons of info prior the appointment. And to me, it seemed like other medical centers only use a biopsy as a last resort (Ie if there are multiple medical conditions involved), and use a variety of imaging-related procedures. In his visit notes, he indicated I consulted with Dr, Google. I had to wait over two months for this appointment, of course I googled it. He also indicated I have high anxiety-which is true not only was he not listening to me, but also regarding the potential diagnosis.

So-as it was the only option presented to me, i reluctantly agreed to the biopsy. And the following day it was scheduled.

In the meantime, I again consulted Dr, Google about who the leading medical centers are that treat this problem, and there was a list of 5, including as #1 Mayo Clinic. Ironically, my healthcare is provided by a network that is a highly regarded medical center/teaching college that also does a vast amount of research, is well known across the country for many specialties, just not the one I have.

I now have an appointment schedule 1.5 weeks after the scheduled biopsy.

If you are still with me…do I just cancel the biopsy, or do I cancel and let the physician know. My current thought is, I have a PCP appointment (3 weeks before biopsy) about an unrelated issue, and can get her thoughts too.

And, just a side note, I do not appreciate this Dr’s use of the term in my notes…that this patient consulted Dr. Google. It is just not sitting well with me.

Are you female, by any chance? Because labeling a female patient as "anxious" when they are presenting physical symptoms or concerns is classic misogyny! Men are rarely labeled as anxious when THEY bring issues to a doctor.

Furthermore, wanting to reference something from online research is smart, provided you're researching reputable websites like cleveland clinic, mayo, johns hopkins, etc. (When I do this during an appt, I always make sure to immediately mention the source first, so they know right away it's credible: i.e., "Johns Hopkins specialists state XYZ...just wondering if you disagree with that?")

I make sure to bring it up respectfully - asking my doc's opinion about the findings vs challenging them with it. If they still resent or refuse to listen to qualified research from a top national source, they're clearly outdated and arrogant - a dangerous combination. Run far and fast before they cause you harm!

 

[shh]

I would get a second opinion. I once asked a doctor why he was changing my blood pressure medicine. He turned to his assistant and said, "Mark her record as non-compliant." I never went back to that doctor. I was just asking a simple question. It sounds like you have a similar situation -- a doctor who does not want to be questioned.

wow. I'd have reported that doctor to the state licensing board.

 

[shh]

I’m sorry this happened. You need to be your own advocate. I saw at least 6 doctors over a year before being diagnosed with cancer. I had 2 doctors write in my file I wanted attention and made up symptoms. You know your body. If something isn’t right or a doctor doesn’t treat you well go to another! Or 6!

Btw when diagnosed I called those 2 doctors let them know they were terrible doctors. I gave them 2 choices. They could apologize to me in front of their staff (humiliating for those egos) or I would sue/protest at their office. Their negligence led to me being stage 3B when diagnosed. No one wants a 29 year old bald cancer patient standing in front of their office with a sign saying they were negligent. I went into both and they apologized in front of there staff. They had several members of their staff leave after that. Be strong no one knows your body like you do.

Ms LoveDaisy - you ROCK. Can you imagine if every patient wrongly ignored who was later proven right did that?

 

[Neapolitan Ice Cream]

I've been referred to the medical hospital at Kings College London for a review. This will be on the NHS. Which is nice, as it will be free and comprehensive - but being the NHS, I'll have to wait a few months, to January. I guess I'll have to take what I can get!

 

[VandVsmama]

Background…I saw a specialist this week, who believes I have a “rare specific condition”. The Dr. believes the only way to confirm is with a very invasive biopsy. I had a list of questions, including, why isn’t the diagnosis and disease progression being done through imaging techniques. He believes the only way to get a true result is with the biopsy. He currently has 4 patients with this issue, and has had about 40 in his 40-year career.

The dr also did not like I had googled tons of info prior the appointment. And to me, it seemed like other medical centers only use a biopsy as a last resort (Ie if there are multiple medical conditions involved), and use a variety of imaging-related procedures. In his visit notes, he indicated I consulted with Dr, Google. I had to wait over two months for this appointment, of course I googled it. He also indicated I have high anxiety-which is true not only was he not listening to me, but also regarding the potential diagnosis.

So-as it was the only option presented to me, i reluctantly agreed to the biopsy. And the following day it was scheduled.

In the meantime, I again consulted Dr, Google about who the leading medical centers are that treat this problem, and there was a list of 5, including as #1 Mayo Clinic. Ironically, my healthcare is provided by a network that is a highly regarded medical center/teaching college that also does a vast amount of research, is well known across the country for many specialties, just not the one I have.

I now have an appointment schedule 1.5 weeks after the scheduled biopsy.

If you are still with me…do I just cancel the biopsy, or do I cancel and let the physician know. My current thought is, I have a PCP appointment (3 weeks before biopsy) about an unrelated issue, and can get her thoughts too.

And, just a side note, I do not appreciate this Dr’s use of the term in my notes…that this patient consulted Dr. Google. It is just not sitting well with me.

Reschedule the biopsy to a week AFTER the other appointment. Blame it on something that came up in your schedule. Get the 2nd opinion first before getting the biopsy.

 

[PollyannaMom]

Is she the one who also had her house flood a couple times and is in process of it being raised?

Yes, that's her. I follow her too.

Reschedule the biopsy to a week AFTER the other appointment. Blame it on something that came up in your schedule. Get the 2nd opinion first before getting the biopsy.

This!!

I have definitely dumped doctors (for myself or a family member) because they were unclear or had an unsympathetic way of handling things. Do what you need to to feel comfortable with your provider.

 

[china mom]

We go to Dr's for their expert opinion and experience, not to regurgitate information so in that Google is not great. Think about how the conversations are going and what is fueling them? Is it fear? Are you asking your Dr to debate Google? A second opinion is important but sometimes time is so important there isn't much of it to squander, is this life or death or do you have time? You should probably ask yourself why you are talking to this Dr in the first place?

I am not asking my doctor to debate Google but what I do expect of him is to answer my questions - even if my questions came from my Google research. I expect them to help me understand why the treatment option recommend by them is the best option for me.

At my last visit with one of my specialists, I asked him a question based on comments from my Facebook group for this particular condition. His response was to not only answer my question but to ask me the name of the group and to praise us for having a group where we could support each other and exchange information. And that was his reaction to a Facebook group, not even my having googled a study from the Mayo Clinic. I love this particular doctor.

 

[Dug720]

I am not asking my doctor to debate Google but what I do expect of him is to answer my questions - even if my questions came from my Google research. I expect them to help me understand why the treatment option recommend by them is the best option for me.

At my last visit with one of my specialists, I asked him a question based on comments from my Facebook group for this particular condition. His response was to not only answer my question but to ask me the name of the group and to praise us for having a group where we could support each other and exchange information. And that was his reaction to a Facebook group, not even my having googled a study from the Mayo Clinic. I love this particular doctor.

My guess is because a FB group is made up of people who are actually dealing with the condition.

"Dr. Google" is basically glorified chat GPT with no one to interpret things. My doctor is fabulous, but even she rolls her eyes if I say I looked something up on Google.

 

[china mom]

My guess is because a FB group is made up of people who are actually dealing with the condition.

"Dr. Google" is basically glorified chat GPT with no one to interpret things. My doctor is fabulous, but even she rolls her eyes if I say I looked something up on Google.

Fair enough. I use Google as a jumping off point to find articles from journals or respected hospitals so I guess I would never say "google said" rather "a Johns Hopkins Study on XXX said..."

I also would not take medical advice from FB but it is a good place to start looking at alternative treatments to bring up with my doctor.

different doctor, different situation - I was suffering from a side effect of a medication I was on and when I told my doctor, he told me that that was not a side effect, in fact, the opposite symptom was a known side effect. Dr. Google did confirm that it was a known side effect of that particular medication - something that my primary was not aware of. We switched medications and the side effect went away.

Now, if there was not a similar, comparable medication available, maybe he would not have been so quick to take Dr. Google's word but it all worked out i the end.

 

[LuvOrlando]

I am not asking my doctor to debate Google but what I do expect of him is to answer my questions - even if my questions came from my Google research. I expect them to help me understand why the treatment option recommend by them is the best option for me.

At my last visit with one of my specialists, I asked him a question based on comments from my Facebook group for this particular condition. His response was to not only answer my question but to ask me the name of the group and to praise us for having a group where we could support each other and exchange information. And that was his reaction to a Facebook group, not even my having googled a study from the Mayo Clinic. I love this particular doctor.

I wasn't trying to make you defensive at all it is just that I am very aware how easy it is to lose sight of the goals when fear is driving.

May I ask, what is the reason you are against a biopsy? It sounds like the biopsy would remove doubt and reduce errors in treatment so why is this so very troubling?

Lots of biologics and treatment drugs are way more dangerous than advertisements would like you to believe. If your first Dr is against giving serious drugs a try without full knowledge and this is why a biopsy is wanted but the second Dr is comfy seeing what happens with random drugs in case they work, I actually think the first one is probably the more responsible of the two - knowing what I now know.

 

[china mom]

I wasn't trying to make you defensive at all it is just that I am very aware how easy it is to lose sight of the goals when fear is driving.

May I ask, what is the reason you are against a biopsy? It sounds like the biopsy would remove doubt and reduce errors in treatment so why is this so very troubling?

Lots of biologics and treatment drugs are way more dangerous than advertisements would like you to believe. If your first Dr is against giving serious drugs a try without full knowledge and this is why a biopsy is wanted but the second Dr is comfy seeing what happens with random drugs in case they work, I actually think the first one is probably the more responsible of the two - knowing what I now know.

You didn't make me feel defensive and I didn't mean to come off sounding that way. I was just contributing to the discussion that Google can be a useful tool as a conversation starter.

As to the rest of the post, I think you might be mixing me up with the OP.

 

[LuvOrlando]

You didn't make me feel defensive and I didn't mean to come off sounding that way. I was just contributing to the discussion that Google can be a useful tool as a conversation starter.

As to the rest of the post, I think you might be mixing me up with the OP.

yep and oops

 

[clh2]

Update:

Thought I would circle back, the Mayo appointment for a second opinion was the week before Christmas.

Met with two Drs. The first was a fellow, he was amazing. He answered questions I had for 1 hour solid. At no point did he treat me like I was dumb. He also had no issue with the fact that I “consulted” Dr Google. He came up with a diagnosis plan that made sense to me, rerun the tests, and then possibly have the biopsy or MRI, depending on the results. Then I met with the Dr who was above the attending, she was also very good, she slightly modified the diagnosis plan to exclude the biopsy and/MRI, as she felt the blood tests would definitively confirm the diagnosis.

The information in my chart from the second doctor specifically indicated that ‘if” my blood test results for a specific panel were normal, then there is no diagnosis of the rare disease.

And the specific results fell into the normal range, suggesting that I have no issue that needs to be addressed, I do need to have a follow up panel drawn every 6 months to a year, and unless those results are abnormal for a period of 6 months, there is not a problem.

Apparently, my original specialist did not follow the proper protocol, that the results of this panel needed to indicate abnormal results for a period of 6 months, and that was not done.

There is potential that “this problem may resurface down the road”, and, I am not even worried. It was clearly explained to me by Mayo, that should I get this disease in the future, it is handled by a drug (relatively inexpensive), that I would need to take forever. There are some benefits to eating healthy, and exercising, which I have been working on since I retired last year. The treatment for this disease has advanced so significantly, that people can live for 15-20 years with this, and die with this disease, not from it.

I’m so glad I had the 2nd opinion. My portion of the charges was $150, and even including the hotel (~$300 for 2 nights), was money well spent.

 

[brockash]

Background…I saw a specialist this week, who believes I have a “rare specific condition”. The Dr. believes the only way to confirm is with a very invasive biopsy. I had a list of questions, including, why isn’t the diagnosis and disease progression being done through imaging techniques. He believes the only way to get a true result is with the biopsy. He currently has 4 patients with this issue, and has had about 40 in his 40-year career.

The dr also did not like I had googled tons of info prior the appointment. And to me, it seemed like other medical centers only use a biopsy as a last resort (Ie if there are multiple medical conditions involved), and use a variety of imaging-related procedures. In his visit notes, he indicated I consulted with Dr, Google. I had to wait over two months for this appointment, of course I googled it. He also indicated I have high anxiety-which is true not only was he not listening to me, but also regarding the potential diagnosis.

So-as it was the only option presented to me, i reluctantly agreed to the biopsy. And the following day it was scheduled.

In the meantime, I again consulted Dr, Google about who the leading medical centers are that treat this problem, and there was a list of 5, including as #1 Mayo Clinic. Ironically, my healthcare is provided by a network that is a highly regarded medical center/teaching college that also does a vast amount of research, is well known across the country for many specialties, just not the one I have.

I now have an appointment schedule 1.5 weeks after the scheduled biopsy.

If you are still with me…do I just cancel the biopsy, or do I cancel and let the physician know. My current thought is, I have a PCP appointment (3 weeks before biopsy) about an unrelated issue, and can get her thoughts too.

And, just a side note, I do not appreciate this Dr’s use of the term in my notes…that this patient consulted Dr. Google. It is just not sitting well with me.

I'd get a 2nd opinion and not see that Dr. again. Even if he's right you don't feel comfortable with him and won't want to deal with a Dr. Who dismisses your concerns and questions in the future.

 

[PrincessShmoo]

I'd get a 2nd opinion and not see that Dr. again. Even if he's right you don't feel comfortable with him and won't want to deal with a Dr. Who dismisses your concerns and questions in the future.

Did you read the whole thread? There's an update just before your post.

 

[Dan Murphy]

Update:

Thought I would circle back, the Mayo appointment for a second opinion was the week before Christmas.

Met with two Drs. The first was a fellow, he was amazing. He answered questions I had for 1 hour solid. At no point did he treat me like I was dumb. He also had no issue with the fact that I “consulted” Dr Google. He came up with a diagnosis plan that made sense to me, rerun the tests, and then possibly have the biopsy or MRI, depending on the results. Then I met with the Dr who was above the attending, she was also very good, she slightly modified the diagnosis plan to exclude the biopsy and/MRI, as she felt the blood tests would definitively confirm the diagnosis.

The information in my chart from the second doctor specifically indicated that ‘if” my blood test results for a specific panel were normal, then there is no diagnosis of the rare disease.

And the specific results fell into the normal range, suggesting that I have no issue that needs to be addressed, I do need to have a follow up panel drawn every 6 months to a year, and unless those results are abnormal for a period of 6 months, there is not a problem.

Apparently, my original specialist did not follow the proper protocol, that the results of this panel needed to indicate abnormal results for a period of 6 months, and that was not done.

There is potential that “this problem may resurface down the road”, and, I am not even worried. It was clearly explained to me by Mayo, that should I get this disease in the future, it is handled by a drug (relatively inexpensive), that I would need to take forever. There are some benefits to eating healthy, and exercising, which I have been working on since I retired last year. The treatment for this disease has advanced so significantly, that people can live for 15-20 years with this, and die with this disease, not from it.

I’m so glad I had the 2nd opinion. My portion of the charges was $150, and even including the hotel (~$300 for 2 nights), was money well spent.

Wonderful update, @clh2. Continued best wishes follow you. 's

 

[flyingdumbo127]

Extra praise to God, Clh2. I'm so glad you got a second opinion. Best to you always.

 

[Southernmiss]

Fantastic news to start the new year! I know you're relieved.

 

[Tuffcookie]

My long time pcp retired at the end of Oct. so I made an appointment with a new doctor. The doctor that retired had diagnosed me with ckd, from undiagnosed high blood pressure in 2015. The retired pcp had me getting labwork done every month to keep an eye on my kidney numbers, which have stayed the same for several years. The Rx I am on, Lisinopril, 30 mg, has done a good job of controlling my high blood pressure. When I had my first appt with the new doctor, in Nov, I told him about my monthly bloodwork order. He told me he would not order it for every month. He would do it every 3 months. I don’t know what to think about this, so have decided to see what happens when I go for bloodwork in 3 months. If my numbers change for the worse, I will have to start looking for another doctor. I have a friend that also went to the retired doctor and she made an appointment with the same new doctor I went to. I told her to call me when she went to her appt because I want to know what she thinks of him. OP, I’m glad you got your 2nd opinion!