GETTING A SECOND OPINION...?

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GETTING A SECOND OPINION...?

Post by MPN-MATE Admin »

Hey everyone... :D

Just found this article provided some sound advice when it comes to any one considering gaining a 2nd, or3rd opinion etc...

Personally, I believe that it is not only beneficial but imperative that MPN Patient's find the right doctor to help them deal with what is a rather complex illness, and therefore... making sure that they eventually find the help that they need might simply be effected by gaining a 2nd or 3rd opinion, in my view...

The following article mentions a number of reasons why this might also prove to be very useful, in fact one study showed:
An example is a 2018 study published in the Annals of Surgical Oncology that found that a second review by a multidisciplinary tumor board at a National Cancer Institute-designated cancer center changed the diagnosis for 43% of the 70 patients in the study.
Very best wishes to all...

Steve


Can a second opinion make a difference?
by Kathy Katella, Yale University


Your doctor may be the smartest, most compassionate, thoughtful person in the world—a leading specialist or someone you've trusted for years. But you shouldn't let that stop you from getting a second opinion.


"Second opinions are commonplace these days," says Anees Chagpar, MD, MBA, MPH, a breast surgeon, and one of many Yale Medicine specialists who provide second opinions regularly. "And just like with any major decision—buying a house or a car or going to college—it's not a bad idea to go to a couple of places to be sure you know what you're getting and why," she says.

While it can depend on the problem and situation, multiple studies make a case for getting additional medical opinions.
In 2017, a study showed that 21% of patients who sought a second opinion at the Mayo Clinic left with a completely new diagnosis, and 66% were deemed partly correct, but refined or redefined by the second doctor. "Often, diagnoses can be complicated or difficult to make, and there may be many alternative treatment strategies," Dr. Chagpar says. "Some treatments—particularly clinical trials—may not be offered at every center. So, while patients may find that two centers offer the same diagnosis and treatment, this is not always the case."
Still, Yale Medicine doctors see patients who worry about offending the first doctor—patients may be concerned about asking the first doctor to share medical records, pathology slides, imaging, and other test results. "People are generally very nice, and they don't want to hurt the first doctor's feelings," Dr. Chagpar says. "But this is really common, and doctors won't be offended. At the end of the day, you want to be sure that you are finding the right team for you, and that you are comfortable with the diagnosis and treatment plan you are being offered."

Many Yale Medicine doctors provide second opinions. We asked some of our specialists about situations where a second opinion may be important.

When the diagnosis is cancer

While cancer patients seem to seek second opinions more frequently, overall, studies show the benefits are unclear, according to the American Cancer Society. But some studies show that they may be valuable. An example is a 2018 study published in the Annals of Surgical Oncology that found that a second review by a multidisciplinary tumor board at a National Cancer Institute-designated cancer center changed the diagnosis for 43% of the 70 patients in the study.

Not everyone diagnosed with cancer will want or need a second opinion, Dr. Chagpar says.
"Patients should seek another opinion if they feel uncomfortable with their initial team, if they have a rare cancer that another doctor may have more expertise with, or if they are confused about their diagnosis or treatment options," she says.
A provider at a major medical center will look at all of a patient's previous information. "At Yale Medicine, we'll have your radiology images reviewed by our radiologists, we'll have your pathology report reviewed by our pathologists, and your case will be discussed by a multidisciplinary team," Dr. Chagpar says.

Cancer can also be emotional, and the follow-up care can be long-range. So, in addition to getting a comprehensive review, patients need to find a doctor they trust, Dr. Chagpar says.
"Remember, this is a lasting relationship. It's kind of like a marriage. Together, you are going to be talking about really important things that are life-changing," she says. "So, you want to invest the time and energy to find a team you trust."
When surgery is recommended

Everyone wants to avoid surgery if they can. Spine issues are just one example of conditions that can leave patients confused about whether they need an operation. There may be a variety of specialists to consult, including orthopedic surgeons or neurosurgeons, physical therapists, pain specialists, and physiatrists (doctors who specialize in nonsurgical approaches). Jonathan Grauer, MD, an orthopedic/spine surgeon and co-director of the Yale New Haven Spine Center, tries to help patients avoid surgery whenever possible.

"Surgery may still be recommended," Dr. Grauer says, citing such conditions as disk herniations, stenosis, and spinal deformities. When he is asked for a second opinion in these cases, he reviews medical histories, exams, and imagings. He then explains why his opinion is similar to or differs from what others have suggested.

"A second opinion is most useful when there is not a perfect answer and you want more input," Dr. Grauer says. He points out that doctors themselves ask other doctors for their input regularly; the Spine Center has multidisciplinary conferences where cases may be presented. "We get everyone to weigh in from their different vantage points," he says.

It is important for patients to keep asking questions, Dr. Grauer says. If he was a patient getting a second opinion that differs from the original one, he would ask, "Why is this opinion different?" The patient might learn that the second doctor put significant time into exploring their case and has good reasons for the different approach, he says.

When the diagnosis or treatment is unclear

Many diseases share the same symptoms, and that alone leads many patients to seek the insights of a second, third, or even fourth physician.

Michael Schilsky, MD, is a liver specialist and an expert on a rare condition called Wilson disease. "Many of our patients with Wilson disease had delays of months or even years before their diagnosis was established," he says. Wilson disease is marked by an inability to properly process copper in the body, and it is believed to affect 30,000 to 40,000 people worldwide. In addition to complications from liver disease, the symptoms can include fatigue, speech problems, depression, and essential tremor (the latter has prompted wrong diagnoses of early Parkinson's disease).
"It's extraordinarily challenging when the first signs and symptoms don't point directly toward something like liver disease," says Dr. Schilsky. "But getting an accurate diagnosis in this case is very important, because an incorrect diagnosis can set you on the wrong path," he says. "If you systematically go down a diagnostic pathway and come up with negative results, you can at least exclude a disease, and that's useful, too, because you then know to move on and look for other things."
Dr. Schilsky also says that anyone who has completed a round of treatment for a condition and sees no improvement—or it gets worse—should consider getting another opinion. If you can diagnose a condition like Wilson disease that has genetic implications, this can impact the health of a whole family, he adds.

When the patient is your child

Getting a second opinion for a child can be even more disruptive than it is for an adult, taking time away from both work hours and school, says Danya Rosen, MD, a pediatric gastroenterologist. She has firsthand experience. In high school, Dr. Rosen saw four different ear, nose, and throat specialists, and three raised the possibility that she might need her tonsils out. The fourth wondered if she might have an infection. She says she was finally diagnosed with mononucleosis.

Sometimes, a family's pediatrician will want to monitor symptoms for a period of time, and it's true that many childhood ailments will resolve themselves, she says. But, some symptoms are red flags. "I would be most concerned if a child is losing weight or having fevers, persistent vomiting, or blood in their stools," Dr. Rosen says. Parents who don't feel they are getting an accurate diagnosis for these symptoms should talk to their pediatrician about seeing an appropriate specialist. "Not everything in medicine is black and white, so sometimes it can sound like one thing, but it's not. There are some kids that have constellations of symptoms that may not fit one particular diagnosis," she says.

Parents should never feel hesitant to talk to their pediatrician about their instincts, she says. "I think what's important in situations like this is to work with your doctor," she says. "In fact, the most important thing parents can do is to nurture a good relationship with their pediatrician, so that if they need to talk about issues like this, they'll feel comfortable. You have to be with someone you can really open up to—especially when you are talking about kids," she says.

When you want some peace of mind

Alexandra Lansky, MD, a cardiologist, encourages her patients to follow their instincts on second opinions for multiple reasons. "Often with patients it can help them better understand what their options are," she says. "Another issue is that medicine is changing all the time and, depending on where a patient sought their first diagnosis, they can miss out on new therapies that are available."

Patients should not be afraid to ask difficult questions, Dr. Lansky says. Some of her suggestions: What is your volume? How many of these procedures have you done? What are the alternatives? Who are your colleagues? What are the possible complications? "You need to be very comfortable with your care, so I think those questions are absolutely appropriate," she says.

It's also important to know when to stop, says George Yavorek, MD, a colon and rectal surgeon. He agrees that patients should seek as much information as they can—but "within reason," he says. "If a patient wants to see a second doctor and a third doctor, that's fine. But there does come a point of diminishing returns, where sometimes patients are looking for the answer they want to hear. They're looking to find someone who'll tell them what they want." The main goal should be to get an accurate diagnosis and an appropriate treatment plan, Dr. Yavorek says.

How to get a second opinion
The process of seeking a second opinion can be as simple as getting a referral from your current doctor and making sure your health insurance will pay for it. You will need to gather any biopsy or surgery reports, hospital discharge reports, relevant imaging tests, and information on drugs or supplements you take.
Yale Medicine partners with PinnacleCare, a confidential service that gathers medical information from the physician who provided the patient's first opinion and, for some diagnoses, allows patients to coordinate second opinions using their phone, tablet, or computer, so they can receive a second opinion in the comfort of their own home. In addition to making the process convenient for patients in Connecticut and the United States, the service provides second opinions for patients in other parts of the world who can't see a doctor in person in New Haven because of travel restrictions or costs.

Yale Medicine doctors also provide in-hospital second opinions through Y-Access, a service that allows referring doctors to speak directly with an attending specialist for an immediate patient transfer to a Yale New Haven Health hospital.
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AnnieFJ
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Re: GETTING A SECOND OPINION...?

Post by AnnieFJ »

So much of this I can relate to. Thanks for posting it Steve.

The second opinion I got this time last year was a game changer. Until then, I was being seen seen once a year on watch and wait by a private haematologist since a diagnosis of JAK2+ ET in 2012.

- I delayed getting the second opinion by months because I liked my haematologist and was concerned about his perception of my lack of trust/disloyalty. The main issue I had was anxiety about the need for a bone marrow biopsy which he advised me to delay, even though more significant clinical signs (weight loss, anaemia, enlarged spleen) had appeared and progression to post ET myelofibrosis was suspected.
- The first attempt I made to get a referral for a 2nd opinion from my GP also resulted in me being talked out of it, on the basis that changes in recommended care pathways meant that 'doing stuff' was not always recommended. My platelets had returned to normal, at 59 I was still working full time and I didn't really feel 'that bad'.
- I was one of the people who got a new diagnosis (as was the case for the 21% in the Mayo Clinic example) when I got the 2nd opinion. In my case, it was a whole new incurable haematological cancer (Waldenstrom's Macroglobulinemia - a rare form of Non Hodgkin lymphoma) - coexisting with the original MPN.
- I was one of the people who eventually convinced my GP (at my second attempt) to refer me to a multidisciplinary team at a major national cancer centre where the research in this report showed 43% had a changed diagnosis. Once diagnosed with the WM, I moved decided to place myself permanent under the the care of Peter MacCallum Cancer Centre in Melbourne which is Australia's largest Haematology centre. With co-existing myeloproliferative and lymphoproliferative diseases - both rare - I decided to go with the pooled knowledge available in a large centre involved in treatment and research - rather than an isolated clinician who only practiced in the private sector.
- Since I finished 6 cycles of monoclonal antibody and chemotherapy for WM in early October 2019, the follow up bone marrow biopsy and bloods allowed better visibility of the MPN and my diagnosis was also changed rom ET to PV.

The best advice of all in the article is to follow your instincts. In my case it was the Stage 4 WM (that had infiltrated 80-90% of my bone marrow) that was causing my symptoms and not the MPN at all.

Now I have finished treatment for the WM - I've needed to start Hydroxyurea for the MPN symptoms in the last month. As it turned out, the MPN was being sat on by the lymphoma, probably for many years.
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KatieB
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Re: GETTING A SECOND OPINION...?

Post by KatieB »

Hi Annie,

Welcome to the forum. You certainly have been 'through the mill.' I was amazed to hear that you had a rare form of Hodgkin lymphoma together with ET. No wonder you needed a second opinion as I am sure most haematologists would never have seen this strange combination of rare diseases.

I have ET Jak2+ and was diagnosed in the UK at the latter end of 2005. I took Hydrea for many years but they kept having to increase the dose to control the platelets. I then came to live in Australia to be near my family and found a very nice haematologist In Sydney.

I developed an ulcer on my foot which I knew was caused by toxic poisoning from Hydrea. My consultant seemed unconcerned but the people on the forum in the UK all said I should stop the drug as soon as possible. Like you, I was loathed to offend this very pleasant man although I suspected he was wrong. With some help, I managed to find one of the MPN Specialists here in Australia and she recognised the problem and took me off the drug immediately.

It has not been plain sailing as I still have signs of the ulcer after 9 months of very painful hobbling around. It is getting better at last and I am now on Peg Interferon and am hoping I can cope with the side effects and fatigue as am older than most patients to be taking Peg.

Do keep us posted on the forum. Steve is a fountain of knowledge and personally I am very grateful he has started this forum so that we have a family of MPNers here in Australia.

Best wishes,
Katie
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AnnieFJ
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Re: GETTING A SECOND OPINION...?

Post by AnnieFJ »

Thanks for the welcome, Katie. I've been having a great exchange with Steve following my registration with MPN mates, so I am looking forward to both learning and contributing to the forums about this disease.

Symptoms that I put down to ageing, change of life and a bit of arthritis that were evident leading up to my diagnosis of ET in 2012 are now re-emerging. I suspect there was a period of dormancy in the years following (as the lymphoma was taking control of my marrow) and I pretty much forgot about it. I put my improvement down to monthly remedial massage which I've been having for the last 10 years!

I'm interested to hear of your journey on Hydrea. I've been on it less than a month. I've just done a blood test at PMC - having to have them 2 weekly at the moment. The first test (after a week on HU) my platelets dropped from high 900's to high 800's - but the Hb continued to climb (now 180). They are considering trying venesection as well as this is a first line treatment for the polycythemia vera.
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KatieB
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Re: GETTING A SECOND OPINION...?

Post by KatieB »

Hi Annie,

Delighted you are taking an interest in the forum. I have just completed 'my story' and have sent it to Steve, so hopefully it will give you some insight into the years I took Hydrea. Apart from mouth ulcers, I found I was fairly asymptomatic until the dose had to be put up to a level I was unable to tolerate. This took several years. The rest you know.
Please let us know how you progress. Each person has a different story to tell and all information is helpful in this bewildering MPN world.
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Alkemist
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Re: GETTING A SECOND OPINION...?

Post by Alkemist »

You certainly have an interesting, but concerning, story to tell, Annie. I find it hard to believe that your haematologist only saw you annually. How often did you have blood tests? Also I find your GP's reluctance to refer you for a second opinion quite surprising. My GP has referred me for second opinions for other conditions on several occasions. My haematologist, whom I see every 3 to 4m was quite happy to refer me for a second opinion a few months ago before I commenced transitioning from Hydrea to Pegasys.

I have been on Hydrea for over 13 years. It has been generally effective in controlling my elevated platelets but its efficacy has gradually reduced and I have suffered from skin cancers and mouth ulcers. I am gradually reducing the dose as Pegasys kicks in. Has Pegasys been mentioned as an option for you?
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KatieB
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Re: GETTING A SECOND OPINION...?

Post by KatieB »

Hi Alkemist,
Great to hear if someone else who ran out of time with Hydrea. I ran out of time because it became toxic. I have just started on Peg. How did you respond to it?
I am a bit old to start Peg but I don’t have a great deal of choice. Did you have any undesirable side effects?
Only just had my first injection but no flu like symptoms at all. Wondering whether I am lucky or the dose is not high enough?

Best wishes
Katie
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AnnieFJ
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Joined: Tue Feb 25, 2020 6:47 am

Re: GETTING A SECOND OPINION...?

Post by AnnieFJ »

Hi Alkemist,

I was on yearly bloods before my appointment for the years 2012 - 2018. In that time, my platelets were pretty steady in the 600's, up until 2017, when they went back to normal and I was taken off Aspirin. At my 2018 check, my red cells had dropped into the anemic range, but they had been tracking down (within normal limits) in the years before that.

I really had not taken much notice of the process until things changed at my 2018 check with the anaemia, the spleen and the weight loss. That was when the possibility of progression was mooted and I was terrified. Being told I was not symptomatic enough for a bone marrow biopsy, and that I should 'live my life as a well person, not as a sick person' didn't reassure me at all!

Interferon was discussed with me by my current Peter Mac consultant but I think the Hydrea was suggested based on ease of delivery. I was also a bit more wary about the possible side effects discussed with the IFN (flu like symptoms, depression) compared with ulcers. Thankfully, I don't have the debilitating symptom burden that some MPNers are living with - my doc's main concern is the clotting/bleeding risk. He tested me for acquired VWF before (it came back negative) before he made his recommendation. He is also still thinking of venesecting me 🤪 when he returns from holidays! My platelets have dropped to 471 after 3 weeks on the Hydrea, but the Hb is still at 180.
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