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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.

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Mentor
Merry, Volunteer Mentor | @merpreb | Mar 29, 2020

@lls8000- Good morning and welcome to Connect. During my 22+ years of lung cancer, I have had a lot of support from previous PCP's. (I am presently switching). They all wanted to keep up with me and make sure I was taking care of myself and wasn't getting anemic. My pulmonologist also saw me quite frequently. Learning that you have cancer is like being rolled over by a bowling ball. How are you holding up? It's scary and confusing with new vocabulary and all those tests, new people and with the COVID-19 it must be terrifying. Does your PCP know of your cancer? You should be having at least a yearly appointment with her and now more often, I think.
Where is your cancer located? My first lung cancer was at 51 years.

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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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Mentor
Merry, Volunteer 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)
@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
Merry, Volunteer 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)
@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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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)
@merpreb

@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.

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2 replies
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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Mentor
Merry, Volunteer 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)
@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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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)
@lisamb

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
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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Moderator
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)
@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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