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Mentor

Has your Primary Care Provider been helpful?

Posted by Lisa, Volunteer Mentor @lls8000, Mar 29, 2020

Good morning, I have been diagnosed with an adenocarcinoma, and am still undergoing scans and biopsies to determine staging. I’m very early in the processing have a lot to learn! I have generally been very health and am still fairly young (49). I have a PCP, but I have had little to no reason to see her; once every three years or so. Has your PCP been helpful, or have you relied on the oncologists and pulmonologists? I’m wondering if or when I should reach out. Thanks.

Interested in more discussions like this? Go to the Lung Cancer Support Group.

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Merry, Alumni Mentor | @merpreb | Apr 5, 2020
In reply to @lls8000 "I am being seen at a Mayo Clinic Health System site close to my home. These..." + (show)
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I am being seen at a Mayo Clinic Health System site close to my home. These providers are closely linked with others in the Mayo network, including those in Rochester. I’ve been impressed with their overall team approach. I know I’m fortunate to have such convenient access to this care.

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@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.

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Colleen Young, Connect Director | @colleenyoung | Apr 5, 2020
In reply to @lls8000 "Thanks for checking in.The liver biopsy from last Monday, does show the cancer has spread, bumping..." + (show)
Profile picture for Lisa, Volunteer Mentor @lls8000

Thanks for checking in.The liver biopsy from last Monday, does show the cancer has spread, bumping me into the stage 4 category. The brain MRI was clear. The samples have been sent for further typing and to check for mutations. That could take a little time. I was able to talk to my PCP over the phone on Friday, because of COVID nearly all visits are over the phone right now. That went well, and I think she’ll stay in touch.
I really am doing well, looking forward to knowing the next steps and getting started with treatment whatever that may be.

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Hi @lls8000, sorry to hear that the cancer has spread to the liver. You may be interested in meeting other members, along with @merpreb, who are living with stage 4 lung cancer in this discussion:
- Anyone out there living with stage 4 lung cancer? https://connect.mayoclinic.org/discussion/lung-cancer-2/

It couldn't have been easy to get that news, especially over the phone. Or maybe it was easier over the phone? Were you listening alone or was a family member able to take the call with you? I'd appreciate it if you would share your tips about telephone doctor consults in this discussion:
- Telemedicine: How to make the most of a virtual doctor visit https://connect.mayoclinic.org/discussion/covid-19-telemedicine-its-a-brave-new-world/

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lisamb | @lisamb | Apr 5, 2020

My brother goes to Mayo in Rochester. He has been on Alectinib (targeted therapy) since approximately June, 2018. He is doing quite well on this. He continues to do 3 month x-rays, scans, etc. He was not able to have his March appts due to what is going on with COVID. Hopefully, he will be able to keep his May appointments.

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Mentor
Lisa, Volunteer Mentor | @lls8000 | Apr 5, 2020
In reply to @lisamb "May I ask where you are doctoring. I have a relative who has adenocarcinoma nonsmall lung..." + (show)
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May I ask where you are doctoring. I have a relative who has adenocarcinoma nonsmall lung cancer stage 4.

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I am being seen at a Mayo Clinic Health System site close to my home. These providers are closely linked with others in the Mayo network, including those in Rochester. I’ve been impressed with their overall team approach. I know I’m fortunate to have such convenient access to this care.

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1 reply
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Merry, Alumni Mentor | @merpreb | Apr 5, 2020
In reply to @lls8000 "Thanks for checking in.The liver biopsy from last Monday, does show the cancer has spread, bumping..." + (show)
Profile picture for Lisa, Volunteer Mentor @lls8000

Thanks for checking in.The liver biopsy from last Monday, does show the cancer has spread, bumping me into the stage 4 category. The brain MRI was clear. The samples have been sent for further typing and to check for mutations. That could take a little time. I was able to talk to my PCP over the phone on Friday, because of COVID nearly all visits are over the phone right now. That went well, and I think she’ll stay in touch.
I really am doing well, looking forward to knowing the next steps and getting started with treatment whatever that may be.

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@lls8000- I'm so glad that you contacted your PCP. Hopefully, that will be a comfort to you as you progress through treatments. It sucks when your cancer advances. Cancer doesn't listen to anyone and won't disappear. You'd think that it would have taken a hint by now. I love your attitude. It will serve you well in the weeks to come. Please just stay in contact. I'm sure that you can help others! Hopefully you'll let me know when further results are in.

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lisamb | @lisamb | Apr 5, 2020

May I ask where you are doctoring. I have a relative who has adenocarcinoma nonsmall lung cancer stage 4.

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1 reply
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Mentor
Lisa, Volunteer Mentor | @lls8000 | Apr 5, 2020
In reply to @merpreb "@lls8000 8000- Just checking in to see how you are doing and to see if any..." + (show)
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@lls8000 8000- Just checking in to see how you are doing and to see if any of your test results have come in?

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Thanks for checking in.The liver biopsy from last Monday, does show the cancer has spread, bumping me into the stage 4 category. The brain MRI was clear. The samples have been sent for further typing and to check for mutations. That could take a little time. I was able to talk to my PCP over the phone on Friday, because of COVID nearly all visits are over the phone right now. That went well, and I think she’ll stay in touch.
I really am doing well, looking forward to knowing the next steps and getting started with treatment whatever that may be.

REPLY
2 replies
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Merry, Alumni Mentor | @merpreb | Apr 5, 2020
In reply to @lls8000 "Thanks, I’ll likely touch base with my PCP before starting any treatment. She should be getting..." + (show)
Profile picture for Lisa, Volunteer Mentor @lls8000

Thanks, I’ll likely touch base with my PCP before starting any treatment. She should be getting copies of all of my results. I have a brain MRI and liver biopsy scheduled for tomorrow to finalize staging and diagnosis. I have issues with center chest lymph nodes pushing on the trachea, masses in the lower left lung, but my right lung is clear. My first chest X-ray was March 6, and it’s been a total whirlwind! 100 different fungal tests and labs, CT, PET, bronchoscopy, biopsies. I’ve been holding up ok, but I’m sure I’m nearing a breaking point too. I’ll get through it. Nice to have found this group.

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@lls8000 8000- Just checking in to see how you are doing and to see if any of your test results have come in?

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Merry, Alumni Mentor | @merpreb | Mar 31, 2020
In reply to @lls8000 "Thanks, I’ll likely touch base with my PCP before starting any treatment. She should be getting..." + (show)
Profile picture for Lisa, Volunteer Mentor @lls8000

Thanks, I’ll likely touch base with my PCP before starting any treatment. She should be getting copies of all of my results. I have a brain MRI and liver biopsy scheduled for tomorrow to finalize staging and diagnosis. I have issues with center chest lymph nodes pushing on the trachea, masses in the lower left lung, but my right lung is clear. My first chest X-ray was March 6, and it’s been a total whirlwind! 100 different fungal tests and labs, CT, PET, bronchoscopy, biopsies. I’ve been holding up ok, but I’m sure I’m nearing a breaking point too. I’ll get through it. Nice to have found this group.

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@lls8000- I am thinking that all of your tests are on today. I wish you the best of luck. You have a lot going on, it has to be overwhelming. If you are feeling that it is very hard to even get out of bed please ask for something to help with depression. Please let me know what the next stage is for you. Please do contact your PCP. She can be a big, big help.

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Mentor
Lisa, Volunteer Mentor | @lls8000 | Mar 29, 2020

Thanks, I’ll likely touch base with my PCP before starting any treatment. She should be getting copies of all of my results. I have a brain MRI and liver biopsy scheduled for tomorrow to finalize staging and diagnosis. I have issues with center chest lymph nodes pushing on the trachea, masses in the lower left lung, but my right lung is clear. My first chest X-ray was March 6, and it’s been a total whirlwind! 100 different fungal tests and labs, CT, PET, bronchoscopy, biopsies. I’ve been holding up ok, but I’m sure I’m nearing a breaking point too. I’ll get through it. Nice to have found this group.

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