Has your Primary Care Provider been helpful?

@lls8000- You are very lucky. I live in southern RI and have to take the train 1 hr to Mass General, but it's worth the trip. Driving to Boston is a horrible experience and just adds too much stress to my being already stressed. I'm also very thankful for being a member of the Connect and being a mentor is such an honor. It really helps me get through some tough times. MGH, Mass General has a fantastic team approach. I have a PCP near home, a pulmonologist 20 minutes away and then my Cancer team at MGH I have 5 Dr's.
I think that it's very important to trust your team.

Just saw your question about PCP and how helpful are they.
I see all Specialists given the compexity of my situation. And my Medigap insurance allows me to self-refer. And of course a Specialist is more knowledgeable on a specific condition than a PCP.
I keep my PCP up-to-date on my situation because he is local and I may need something. I am about 1hr and40m from Mayo so I cannot have a PCP at Mayo and it would not be practical driving in the winter here. I utilize my PCP for quick COVID/Flu tests if I havve symptoms and he knows it is critical for me. I do a couple of visits/year for little things and to update blood work. It is a challenge coordinating my multiple conditions, tests, and treatments and important because one can impact the other.
I sometimes think it would be interesting to have a "MD Navigator" at Mayo who would be sure that all the bases are covered with complex patients. I am about to provide two of my Mayo specialists some research I have found on my two conditions and I will ask if Mayo is tracking similiar cases and what has been the outcome.

@lls8000, I'm also late to this thread. It's also been quiet for a while. I hope that all is going well, Lisa.

My perspective is that my PCP and my Oncologist are my friends. Other specialists are brought in to do a job, and I don't see them again unless they find an ongoing issue. I'm fortunate because PCPs were impossible to find in less than six months when I moved here. My top priority was finding a good Oncologist, which I did within a month. He then referred me to a PCP who he knows personally. In addition, my Radiologist, Cardiologist, and Nephrologist all know one another, which helps.

I've found my PCP to be an essential team member, primarily acting as the glue that holds my team together. As an LC survivor, it's easy to think that everything that's going on in my body is due to the cancer or treatments. However, my PCP knows all my tests and evaluations and schedules regular visits where he can provide personalized recommendations that more narrowly focused specialists don't always see. In addition, he requests additional blood tests, including thyroid and hormone checks, which my oncologist agrees is a good idea.

The only tricky part is ensuring he gets copies of all the specialists' results because every office uses a different electronic tracking system. However, a former British boss once told me the most significant difference between health care in England and here is that here we must be our strongest patient advocate.

"we must be our strongest advocate"
That is the reality of it.
Definition: Patient self-advocacy has many different aspects, but at its core, it is about actively participating in decisions about your health. Practicing self-advocacy can help you get the support and medical care you need which can lead to better health outcomes.
Here in the US providers must now post test results and Notes on MyChart, availabe to the patient. I can always print results to take to my PCP but in my case his institution uses same system as Mayo and whatever shows up on MyChart Mayo shows up on MyChart of my local provider.

In a word - no. My PCP is not at Mayo unfortunately.

@vic83, unfortunately, MyChart is expensive to implement. My Nephrologist and Gastroenterologist use MyChart, but all my other doctors use different systems. All patients and doctors would love it if there were one standard system, but the healthcare industry isn't there yet.

Yes, I know how expensive these systems are to implement. I worked in high tech. Maintaining all health data in a global database offers great benefit to medicine. It would be possible to identify trends and analyze results of different treatments against different medical profiles for a large population with ease. The Affordable Care Act mandated patient information be digitized that test results be made availabe to patients online - before you had to request copies from your doctor. I remember one doctor's office that had patients enter their data in a computer! Some help was provided to medical practices but I have observed how small clincis have only basis Internet sites. Sometimes they work with other offices to use the same system. The bigger places have the $$$ to install more sophisticated systems. But a developed MyChart allows one to even run a comparison of test results over time even between institutions. Medicare actually tracks some of your medical information. I wonder if it wouldn't be better to have all one's reports uploaded to Medicare site. Granted there would be security issues, but a "global database in the sky" is what is needed for healthcare data to study disease.

@vic83, Thanks for resurrecting this post. It's emotional to look back at the place that I was in over four years ago when I was just being diagnosed and just discovering Mayo Connect. I've come so far, learned so much about lung cancer and about myself. I'm also facing breast cancer now, and having stage IV lung cancer certainly impacts some of the decisions and choices that I am making. Quality of life is very important to me, and I feel that I've been a bit spoiled by my lung cancer targeted therapy.
I do still see my PCP on a regular basis. She has helped to keep my non-lung related care in check; including other illnesses, screenings, and those labs that aren't generally followed by oncology. I feel that she's always happy to see me, and to get the update on how I'm doing.