second opinions

[Vintagemama]

First, I want to thank everyone who responded to my question about diflucan. It was enlightening to read your comments!Thank you all very much. This is my next question, and I must admit I really don't know the best way to handle it. We have one cancer doctor, and he is very busy, and doesn't have much time to sit down and answer my questions and concerns. I have many immune system problems, and some of them are, Interstitial cystitis, lupus, sjogrens, collagen vascular disease, hypothyrodisim, high blood pressure, had a heart attack & stroke, and diabetes. When I have an infusion, he pops in for a few minutes, and tells me what treatment he I wants me to have next. When I ask him what side effects I can expect,he seems to think Iam being overly anxious. There is another doctor about 250 miles away, who is a cll specialist. I would like to visit with her, and just get a second opinion, but I don't think my doctor would be on board with me seeing another cancer doctor. She would have to consult with him, and I just don't know if he would like that. Any advice would be so appreciated. Thank-You.

[Davidcara]

You know your Doctor best. Some with big egos, some without. In my case, my oncologist is very easy going and I had a second opinion. Even before the second opinion, I was pretty confident the plan of treatment would not change. 250 miles is a long drive but, you also have to feel comfortable with you treatment plan. I think it would be a good idea to see the specialist. Your primary should get over it, and if not might want to look for another MD

[lankisterguy Volunteer]

Hi Vintagemama,

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I have a tee shirt that says "It's your health - own it" and I really believe that getting 2nd opinions from CLL Experts will allow us to live longer. So I am not sympathetic to the doctors that act like they "own" patients.

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I suggest you have a calm professional conversation with your current doctor and ask to have a copy of your records forwarded to the CLL Expert. You can make it clear that this is a 2nd opinion only. Due to the distance involved it would be impractical for you to change doctors, but you need the best information you can get about your complex condition. And to help you understand the possible side effects. It is your life and your anxiety at stake, and your current doctor should be professional in respecting that.

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Len

[cllady01 Former Volunteer]

When you posted 15 days ago, the sentiment of those who replied was because of the complexity of your situation, a second opinion would be a smart and beneficial move to make. I hope you can and will be able to so as Len has suggested.

You do not have to have your Drs. approval or okay to get a second opinion. This is your life and you are struggling and hurting on every level and you are stressing to the point of it being harmful to you.

I know it is difficult when you are feeling ill and anxious. Is there anyone in your family or community who can help you with getting the records and getting them to the Specialist.

[AussieNeil Administrator]

You've had some excellent replies from Davidcara , lankisterguy and cllady01 . Unfortunately, you are not alone in facing this difficult situation, with other members sharing similar stories. I've been fortunate in finding collaborative doctors and specialists and have found that doctors generally appreciate patients that take an interest in their health, as they know that such patients are more likely to follow medical advice and thus do well, which reflects well on their reputation.

The vast majority of doctors support a patient asking for a second opinion. If they are confident in their skills and experience, they can expect a confirming opinion, or maybe another possible option which can then be discussed with you so that you can decide what best suits you - and which you will be most invested in following - again to your doctor's reputational benefit, as well as we would expect would be their wish that your health is improved.

Neil

[Biker7]

Some CLL specialists here in Australia provide Telehealth consultations by phone, Skype etc thanks to COVID-19. Is this an option where you live? If It is, then your choice of specialists is no longer limited to just 250 miles away.

It’s very important to get a second opinion if your doctor isn’t a CLL specialist. Experience matters! No one should have to “walk on eggshells “ with a doctor when facing a serious disease. I speak from personal experience! It can be a very difficult situation. But our health is far more important than the doctor’s feelings.

[studebaker]

You did get excellent advise from everybody here. I was in a similar situation and understand how difficult the conversation with your doctor is, especially when you feel being rushed and not understood or listened to.

With support and encouragement from everybody here, especially administrators and volunteers I did it. The best decision in my life.

Could you write all your questions and worries down and explaining your need to see a CLL specialist for second opinion and give him a copy?

Sometimes, I ask the doctor what he would do if it was him or someone close to him. You have very complex situation and you have every right to get your worries answered.

Take care and good luck.

Sending you virtual 🤗

Dana