The Patient Portal—Help or Hindrance?

For me it’s been a blessing, I am retired and spend a lot of the time studying my reports, it’s because of this that I knew my Dr was wrong and thankfully I found Mayo Clinic who did listen to me. I had surgery right away and found out I have non-small cell lung cancer in both my lungs. Stage 1, has not spread. If I would of did what my original Dr. wanted, I’d still be waiting.

I understand what you mean about being able to access blood test results right away. I am able to do that also but as you said, what do the results mean?
My doctor is so very busy with others' whose CLL is at a later stage and they need treatment and they have many symptoms. I was just diagnosed last week of December 2022 and I will see my doctor next week. CLL is so very confusing.
You are told to watch and wait and that it is slow growing and that no treatment is needed at the moment and not to worry. However, i have no idea if my CLL will become worse and need treatment. Right now I have several symptoms...I am so very tired, my bones ache, I get small rashes and then they go away. The rashes appear out of the blue and go away out of the blue. No where do I see these symptoms on the CLL website. So are my symptoms from CLL or something else? I never has these things happen in the past...except for my bones aching and being tired, I had those symptoms for about a year now.
Do you have any symptoms like that? I feel crazy...

Does anyone with CLL have symptoms you are experiencing and are in the early stage? The stage being stage 0 or 1? The watch and wait stage.
I feel so alone because at such an early stage, I should not have any symptoms, but I do.
The worst symptom is the bone pain and being so very tired. No swollen lymph, glands, no weight loss, no fever, no night sweats, no infections, I do bruise easily but no nose bleeds, or anything else listed on the CLL symptom list but I feel really lousy! So very tired! And I exercise, and walk everyday. How can I feel so tired when I am in such an early stage, and my blood work is mostly normal. It doesn't make sense. I am not supposed to have symptoms yet, right?

I am retired and always read the reports too! 14 months ago, I had an abnormal chest-x-ray and went to first available local Pulmonologist. Based on radiologist's recommendations they ordered CT scan and then PET scan. The resulting reports stated potential cancer. I knew the local Pulmonologist had no expertise in lung cancer and requested my scans be sent to Mayo and was called the next day by Mayo. I had surgery three weeks later and had a cancer removed and a diagnosis of multifocal lung cancer. Not only are those reports important to read, but looking up the doctor's background and specialty is also important. Because they do not all have background in desired subject matter, nor does their institution offer the latest treatment options.

That is great advice. It’s frustrating when you wait 3 months to finally see a specialist then find out they’re not exactly the right specialist for your case, so you get referred to a different one with another 3 month wait. Add to it the tests and scans that can take weeks to schedule to complete the diagnosis, then the wait to get treatment scheduled if needed. I lost 4 months in a process once with an entrapped nerve in my elbow; with my symptoms, my PCP referred me to an orthopedic doctor who specialized in shoulders. When I got to him 4 months later, he felt bad that he couldn’t help me, because my elbow fell under orthopedics HAND specialty, not Shoulder. So I had a 3 month wait to get to the Hand specialist, who could finally diagnose and treat my elbow issue. If I had researched on my own up front, perhaps I might have been able to avoid going to the wrong specialist first.

Your story is a great illustration of why it is wise to take charge of one's medical care. That is what they mean by telling you to "be your own advocate".

I have 3 patient portals, but need 2 more in order to have access to all of my health info. I am a stickler for results and findings, so I get printed reports from medical providers that don't have a portal. This is such valuable access to being our own advocate. So, I am HUGE believer in portals!

Some health systems make the process for a patient to recieve their own records onerous. I had a PetScan back in August which has led to a quandary over is it or isn't it lung cancer. To get a copy of the actual scan imgaery I have to jump through the hoops of sending a "cd" and waiting for them to download it and send it to me in their own sweet time. Fortunately a regional health system which has a top notch cancer center where I've since switched for health care has some sort of shared/mutual aid agreement and they have the imagery.

clearly when $$ is part of the prescription patients are on their own.

Thank you for your comment, it was helpful and encouraging. I've been dealing with similar situation since Aug. last year and now am in wait and see limbo, having had first ct scan yesterday since petscan last year.

You have to give them a CD???
They could not send electronically the actual scan to your desired medical center?