When to switch medical oncologist & PCP recommendations

I have had a rough experience at KU ~ just had my 1yr anniversary of my 1st appointment. My 1st surgeon defiantly withheld information causing an extra surgery, delay in plan of care & ultimately led me to completely switching teams.

Thankful for my new surgeon, plastics & radiation oncologists…it’s been a long year of cancer dx, BRCA2 dx, chemo, DMX & radiation. 

I feel like I’ve been behind the 8 ball since switching teams. I’m still struggling getting any answers from my medical oncology team. I have been assigned the NP most of my visits & maybe she genuinely has no clue (ie: when asked what the process will be to catch my cancer at a stage 3 vs 4 if/when it comes back, her response was “do you have someone to talk to?” I literally chuckled out loud a little bc I thought she was kidding…she was not…I responded with “well…you” & she responded w “anyone else?” I looked at my daughter & we both chuckled & said “yes, we do have a great family/faith support system but they can’t provide a proactive plan of care moving forward after I dot all my “I’s” & cross all my “T’s” ~ her response was…a referral to psychiatry…yep! 
Fast forward 5 months & had to beg for a baseline dexascan before starting Letrazole…surprised to find out I’m osteopenic prior to AI….got a pt portal plan of care “take some calcium”(already a huge dairy intake person my whole life).

Then when starting Lynparza (for BRCA) the specialty pharmacist program insists on monthly labs & my team initially refused & said “standard  of care is 3 mo labs” In which my reply was “I’ve already met my deductible, I have my port “Hope” & I’m confused as to why the specialty pharmacy requirement is a baseline lab drawn before starting the drug & call me to remind me to get my monthly lab draw. This pharmacy was picked by my ins co on a drug you prescribed & they are stating that the standard of care for this drug is every month.” Their response “So are you wanting them every month?” 

I swear….i feel like I have been “punked” this whole last year! Every appt I have showed up w a genuine smile! Each day is a new day! Grace has been extended in the form of a confetti canon factory…

I recently read my clinical notes from each visit & am blown away at their “assessment” skills (“anxious, nervous, sleep disturbances, dysphoric, depressed”) ~ anyone & everyone that has ever known me AND has walked even near me on this cancer journey would be shocked at even joking about any of those descriptions attached to me….Do they get more insurance reimbursement to click that? And are we as patients reading our clinical notes after each visit….Is this what medicine has turned into? I am an RN…& oh how I have wished I had a “Holly” anywhere in my journey. I genuinely feel God has allowed me to experience this so “we” as a medical community can do better….but in the meantime….I have only 1 life…and I need a proactive, educational, empowering team….

I had a GI referral appt bc of my BRCA gene. Did the online check in & the Dr walks in & asked why I was there. I said “I have BRCA2 & I think they just wanted a baseline w you guys for my pancreas.” His response “well, have you ever even had cancer?” YOU GUYS…..I was BALD in his exam room!!!!! Had just finished cancer & has drains in from my DMX!!! And if he has read anything in my chart he would have also known I had another kind of cancer in 2013 (treated there!)!!!! But atleast have the assessment skills to think: hmmmm BRCA…bald…maybe…just maybe she HAS had cancer??!!!!

lots of venting…but felt just a little background was needed….Thank you for listening….& recommendations dearly welcome…On paper I’m currently with the “best breast oncologist at KU” but I grieve that my experience has been quite different.
do I stay at KU & just switch oncology teams? Is the grass actually greener anywhere? 

On a fun note…I could also use a PCP recommendation. Im a little gun-why after my GI dr experience of reading my chart and being prepared for the next patient.

I’ve been so healthy for 50 years I’ve only had a dentist and a GYN 💕

thank you for this format….your time…your experience…your heart for future “breasties” of KC

~ Holly