When to switch medical oncologist & PCP recommendations

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)

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.   

@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 all the chemo and radiation (like on a cellular level rebuild it)? Do you know if she is open to monitoring like Signatera?

Sooooo many questions….I'm so sorry & not even sure if you have any of these answers from your personal journey (hugs!!) I’m nervous to make only a lateral move if the medical system doesn’t allow her to independent thinking and create personalized patient care (if that makes sense) 🙂

Thank you sooo much! 

@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”?

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 was definitely a clear plan from start to ending and through the current maintenance phase.  She told me at the beginning once you are my patient you are always my patient….for the rest of your life.   We never spoke about Signatera but do regular follow-ups in the office with either her or her NP (usually alternating).  As far as strengthening body….I don’t recall details with the exception of discussing weight training and continue to exercise and move my body as those things would help since I’m on a hormone blocker (was Tamoxifen, now Arimidex).  There is a nutritionist that I had the opportunity to speak with during treatment back in 2022 so I know that service is available through KU Med and a nutritionist might be best for you to connect with to talk about rebuilding your body.  Hope that helps! Wishing you the best.

@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!

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!

@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?

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 about my chances.  He was hopeful that mine was still "contained" at site.  So I had surgery to excise it, 29 lymph nodes removed from armpit (back then not great technology to know if they were invaded...so scooped every tissue cell they could...and still left me function of my arm!).  Then had excision of Stage 1 lump and iridium implants placed in surgical site in excised breast for 36 hr.  Back to surgery to remove those.  Followed with 28 external rads in the following weeks.  No chemo as they did not have anything they felt would treat it.  I was so thankful they were honest about that, as they could have tried an "experimental" one and lots of tissue damage for nothing.  Six years later I had another tumor start growing in same breast but different location.  They recommended an immediate mastectomy, so Dr Jewell and I agreed it was time to take both breasts.  It was the dark ages before micro-vascular surgery.  Had to use the trans rectos muscle (the one you use for ab crunches) as a tissue transfer with blood supply.  The muscle was split in 2 length wise with what little abdominal fat I had at the lower end of it.  I am not symmetrical size wise but that's ok.  He did all the transfer under the abdominal skin via the hole created by nipple dissection.  To look at me, I have a faint circular scar where each nipple area was and a lower abdominal scar that follows where I had 2 prior C-sections.  It was balm to my soul that I didn't end up with a huge horizontal chest scar.  A part of their team, WE had again caught this before it had bloomed into my system.  I am now so far out I only have a mammogram every other year and followed only by my PC dr.  Upon my first I joined the American Cancer Society support group in Overland Park. I live south in the country area near Louisburg KS.  Within a few weeks their leadership group asked me to join them.  Have been involved with them ever since, plus some work with a few others along the journey.  So... my advice is to advocate, research where you can, and always look for team members who are there to really help, even when it seems there is nothing. I know Covid changed a lot in medicine.  My husband was a Med Tech for 40+ yrs in a hospital on the Kansas side, specializing in chemistry, but knowledgeable in several other departments of lab.  It definitely sounds like first dr is not a good fit, and it's time to find someone who will try to help you get down the road to living again. If you ever want to talk or vent, please give me a call or email.  913-206-4518  Buttercup_66053@mokancomm.net   Hugs!  JULIA

@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 how was it determined to continue getting yearly mammograms after your DMX?

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 since I don't have any real issues with it yet to need a specialist on it.  Again, this is soooo weird and not typical as I am 5" 2 1/2" tall, weigh about 112#, small frame, was a natural blonde until after pregnancies and now dirty dishwater blonde - with gray trying to propagate and a 2 time breast cancer survivor of all these years!  I am still an anomaly.  Insurance was still covering the testing so I had not really thought about "the need".  But, with my age, she really felt bone density and fractures were a bigger health threat in my senior years and didn't think the added radiation of mammogram was warranted.  My maternal grandma died at the age of 28 (later info indicated she probably had ovarian) when my mother was 10. My mother died of a form of breast cancer at the age of 51 in 1979.  Loss of bone density/fracture with falling are seen as bigger health risk for my health at this age.  Since my Trans Rectus (attached/tunneled under skin) reconstruction for breasts is lower abdominal fat and I had no chemo, the risk of breast cancer developing in it is pretty small.  My sister who is 4 years older than me, dark complexion, brown eyes/hair, and heavier boned developed Osteoporosis 20 years ago.  There are lots to consider after a breast cancer diagnosis.  With the advancements/increased knowledge made in medicine a lot has changed.  For me, it boiled down to God still wanted me here...and it wasn't just for myself, my husband, or my 4 young children.  The amount of information (good and questionable) you find can be overwhelming.  I found a need for helping a lot of women (and yes 2 guys) navigate the healthcare system, find and sort thru viable (to them) medical information, handle the emotional part, how to deal with loved ones before and after treatments, etc.  AI computer information doesn't cry with you at 2am when you can't sleep because the unknown or the weight of it all gets overwhelming.  I like to help people feel they can be empowered to make decisions in their current healthcare and lives now and whatever the future brings.  Breast cancer isn't the scourge it was in my days as we now know you don't "catch" it from someone walking down the street.  But it can sure throw a good curve ball.  Arm yourself with good information, a medical team you are a part of and comfortable with, and look for positive things to come that possibly wouldn't have if you never experienced this.   Will hop off my soap box and say "Good night!"  

@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! 

Holly I am sorry about your experience and I can completely relate.  I also want to weigh in about Dr. O'Dea.  She is my Oncologist and is great with standard medical care.  She is not going to be helpful about integrative/ preventative or whole body health outside of eating healthy and exercising.

Somethings I have found helpful in the past 4 years: I follow Dr. Leigh Erin Connealy on Instragram and have read her book, The Cancer Revolution and found it to be helpful about preventative care. I also enjoyed reading Radical Remission which is written for stage 4 patients but I found the tips to be good. Last recommendation is  Life with Kate Inner Circle $25/ month - she gives great resources on how to be healthy in mind, body and spirit.  The program also includes great strength training videos and podcasts about nervous system health, etc.  

Most importantly, you are not crazy.  The questions you are asking are great questions! 

@holly Quite a few years back KU really wasn't interested in me anymore!  I was so far out and no real reason to be seen by their specialists.  So between my regular female breast specialist I was seen 1x/year but they didn't feel the need to continue doing mammograms since I have no real breast tissue.  I continued to have Bone Density done every 2 years.  As of last year I actually started losing just a bit of bone density...which is another anomaly for a breast cancer patient.  I have retained my 5'2" of height over the years, which is another anomaly with my bc history.  My breast specialist left the area, so am having my PCP do whatever testing I might want/need.  She is happy to order the bone density!  BTW... I am now 73 years old.  Having the breast cancer twice so long ago and no real problems with bone density, no one seems too interested in me and certainly don't feel it warrants more radiation for tests that probably are not going to change the course of my current care.  I thank God for the health I do have in this time of aging.  I truly hope others who have been diagnosed and are still actively being followed, please keep the faith and try to take the best care of yourself you can.  With all the advances in medicine, hopefully more gals will have longer lives... living BEYOND breast cancer!  I love to talk to anyone with current concerns and possible treatments available.  Half the battle is the physical/medical and the other half is keeping a mental balance.  If you don't have a friend or medical care person you feel free to talk to about anything...anytime, please call me!!  I loved to help someone figure out their "next step" in this process!

@spschmidt4   All questions should be viewed as valuable in someone's journey forward!  Do NOT hesitate to ask...and if you don't find someone who considers it legit, ask others until you find someone who can help point you to the answer.  Back in my day, many untrained drs would not want to tackle and give credible answers to a patient...even if it meant referring them to someone else with expertise in that area.  You are the most familiar with your body of all people... when something doesn't feel right or you don't know an answer you think you should have, keep asking until you find someone willing to help you have the understanding you desire.  This applies to all health aspects...not just breast cancer.  YOU are your best advocate!