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When to switch medical oncologist & PCP recommendations

First post and replies | Last post by Holly, 2 weeks ago

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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...

By Holly 2 weeks ago
Breastie! First, sending love to you. Not aligning with your care team is stressful. It is an important aspect of your healing to trust those guiding your health decisions! Without knowing who your oncologist is, I strongly recommend Dr. Anna O’Dea (KU)

By adjackson 2 weeks ago
So sorry to hear this was your experience. I had/have a great experience at KU. My oncologist was Dr. O'Dea. That being said, I truly believe if you are not feeling good with your current team, then by all means you must advocate for yourself and find someone you do feel comfortable with. I also have an internal medicine doctor in Leawood that I use......Dr. Jennifer Brown who I would recommend.

By Iamasurvi... 2 weeks ago
@adjackson ~ thank you so much for your kindness & understanding! I have heard great things about her! How long ago were you under her care? Did you feel like you had to lead your care, that questions were an interruption or were welcomed? Did you feel like there was a clear plan of care from beginning to end and ended into the “wait” to see if it all worked and if it all was worth it? Did you consistently feel kindness/compassion from her AND her team? Was she open to discussing & have a proactive plan on strengthening your body after ...

By Holly 2 weeks ago
@iamasurvivor ~ thank you! Can you read my question below to adjackson & provide any personal insight regarding Dr O’Dea…& I so appreciate your recommendation for Dr Jennifer Brown! I will check her out!! Do you k feel like she looks at you holistically or is she more like “let me know if something is hurting and then we will look into it”?

By Holly 2 weeks ago
I do not believe Dr. Brown to be practicing holistic medicine, rather she focus on the medical needs. She is very matter of fact and practical and answers my questions and is thorough in her exams. She is an internal medicine doctor and I believe she is good at diagnosing issues and treating them. Regarding Dr. O’Dea. I started seeing her in February 2022 when I was diagnosed and still see her for follow-ups today. I always felt like I was walked through my cancer journey. Her team led me through everything one step at a time. There...

By Iamasurvi... 2 weeks ago
@iamasurvivor this is sooooo helpful and sounds like much more the oncological experience I was hoping for!!! Thank you tons for sharing this info with me!!! And as for Dr Brown “good at diagnosing and treating” is a great start for me!!! Huge hugs and appreciation!

By Holly 2 weeks ago
I will ditto the other response to your questions. I am still seeing Dr. O’Dea and just finished chemotherapy. I highly recommend. But if you ask for anything in the direction of holistic care, that’s not her wheelhouse. She focuses strictly on research based medical advice that she will tailor to your specific needs. I hope this helps!

By adjackson 2 weeks ago
@adjackson this helps a lot! I think I need the wisdom, education and experience of “research based medical advice” but to sit in the down and not receive any of it has been so frustrating!! This is encouraging! I get that adding “holistic” care is gonna require me to add a different team member to my care 🙂 “Holistic care” also meaning looking at me a a whole patient: mind, body, soul, spirit ~ belong to people and important to people that love me vs “next” in my schedule. Is this something Dr O’Dea has done for you?

By Holly 2 weeks ago
Oh my Holly! What a nightmare! I am glad to see some "current" supporters!! I am a "long-timer", twice 1992 and 1998. Should have been dead both times because they knew they had nothing to combat my type. But...I was blessed being assigned to Dr William Jewell...who went on to be a huge part of bc care advances in techniques etc. The first time I was 39 in 1992. Chemo was in it's infancy and what there was, usually was fairly harsh at best. But, it was a time of advancements and better understanding. Dr. Jewell was straight-forward abou...

By Buttercup 2 weeks ago
@buttercup thank you so much for sharing your story! Oh my goodness….to imagine how far we have come in technology and the study of this disease…so thankful for God’s good was over your life!!!! I just listened to a podcast w Dr Roy Jensen and Dr William Jewell and the history of KU becoming a NCI! So neat! Thank you for reminding me that there can be and should be “someone who will try to help you get down the road to living again” ~ that sounds so good to my soul and has felt quite impossible me for a bit. Can I ask you who you see now and ho...

By Holly 2 weeks ago
Actually it's been years since I had any kind of mammogram as I don't have any known "breast tissue" since my bilateral. I get a Bone Density test done every other year as bone loss is an enemy of aging women. Until 2 years ago Midwest Breast Care, Dr Anne Kobbermann, ordered them. It wasn't until 2 years ago my bone density started a slight decent. Dr Kobbermann didn't think the radiation exposure was worth my breast cancer risk at my age (now 73 yrs) and how far out from last incident (now 28 years). My PCP was who ordered it this year s...

By Buttercup 2 weeks ago
@buttercup ~ I love how you have been able to advocate and empower and educate people for so many years!!! And I really loved the perspective of God having a job for you over these decades!!! Praying I can find “my team” moving forward & my experience can be used to bring interpersonal change to the breast cancer fight 💕Huge hugs and thank you for standing on your soapbox!!! All appreciated!

By Holly 2 weeks ago
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