• Have you found that you have continuity of care and does that make your "journey" easier to navigate?

    Asked by Bengal on Saturday, June 19, 2021

    Have you found that you have continuity of care and does that make your "journey" easier to navigate?

    I just got a letter from my oncology services management announcing that my THIRD oncologist since starting this journey in 2017 had departed and my next follow-up will be with a new doctor and complete stranger to me. I hate this stuff. I live in a mostly rural area with a small hospital, like so many, struggling to keep going. There seems to be great frequency of changing personnel. I think many starting physicians take whatever job they can get and then start searching for the job they really want and then move on. I think, for especially cancer patients who are in it for the long run, this proves to just add to feelings of anxiety, stress and disrupts a sense of stabilty. Any thoughts?

    18 Answers from the Community

    18 answers
    • Carool's Avatar
      Carool

      Bengal, I agree, and I’m sorry that your latest oncologist has left (after two others you’ve had). I’d find it very disconcerting. While I no longer see my oncologist, since it’s been a long time since my treatments and years of follow-up, at least so far, I’d hate to have to see a new one if my cancer returned. My breast surgeon and my NP in the Survivorship Program are still at my hospital, where I go for mammograms, ultrasounds (and breast MRIs, when I needed one last year).

      A dermatologist I loved and saw for ten years moved to Florida a few years ago. I still miss her, though I continue to see a dermatologist at the same hospital (not cancer-related). I don’t like switching doctors or dentists; once I’ve found one I like, I stick like glue.

      I hope you really like your next oncologist, and that person stays.

      about 1 month ago
    • Bug's Avatar
      Bug

      I definitely agree that changing doctors can bring a lot of anxiety and stress and disrupts a sense of stability. I don't like changing doctors at all. Like Carool, when I've found one I like, I stick like glue. I'm sorry this is happening to you. I really hope you like the new oncologist. Hang in there. And tell us what you think of her/him.

      about 1 month ago
    • ChicagoSandy's Avatar
      ChicagoSandy

      It may be exacerbated in a rural area, but it happens in big cities too. I'm on my third primary care doc since mine (who treated three generations of my family) died of COVID a year ago. I set up an "establishing visit" appointment (over a month in advance), had the visit (for which Medicare refused to pay because it's an "establishing visit" and not for a specific problem), and then when I needed to see the doc learned that she had left the system--and even switched specialties! My ocular oncologist is no spring chicken and has an adult child with a chronic health problem in another state, so I get the sinking feeling that I may soon no longer be able to have him ride herd on my uveal melanoma--and either have to switch to someone far less experienced, or travel out of state every couple of months for followups with someone with the right expertise.

      about 1 month ago
    • MarcieB's Avatar
      MarcieB

      I agree this is discouraging. My oncologist is great, but her NP and nurse were the ones who saw me the most during my treatment and I came to think of them as friends who cared about my outcome. The NP retired (early!) and my nurse transferred to another department the same month I completed my treatment. They were my cheerleaders through 10 months of fear and uncertainty and now they were just...gone. It has been very hard for me to warm up to the new NP and that is not her fault.
      Bengal, I hope you can make a connection with your new people quickly. It makes a difference if you can feel a sense of trust and genuine caring.

      about 1 month ago
    • Bengal's Avatar
      Bengal

      It just adds to the trauma a newly diagnosed cancer patient already has. My first oncologist was great. I immediately felt she truly cared and remember her reassuring me "we'll get through this together" no matter how long it takes. Then she was just gone. I had started having my follow -ups with a PA and had started to feel we were developing communication. Then he was just gone. My latest oncologist seemed rather remote (pandemic year didn't help) but I had finally started to feel comfortable with her. I very long telemedicine call with her had helped with that. Now she's just gone and I have to start over again with a complete stranger.

      Oh, and I forgot to mention, oncology has hired three new doctors . ALL MEN! All the reception people and nurses are "girls". All the doctors are men. Am I wrong to take exception to this? I feel many women, especially when dealing with breast cancer, just feel more comfortable with a doctor who can relate.

      about 1 month ago
    • Teachertina's Avatar
      Teachertina

      I agree with all of you that it’s hard to change doctors. I’m dreading this so much because I’ve had my oncologist for over 15 years and I heard a rumor about him retiring in the near future. He’s the only doctor I’ve ever had for anything serious and he’s been awesome! I know there are others that are very good but you build a relationship over the years and that’s not replaceable. Good luck with your new one Bengal!

      about 1 month ago
    • Lorie's Avatar
      Lorie

      Hi everyone. Yes, changing is hard. The doctor was ok butThe office I was going to was so busy and sick people having to wait and grumping at the help I decided to change offices a year ago. Well, the new office is slower and much more relaxed but the Dr. is a goof. First visit he talked more about his accolades than my issues. Second visit I could hear him on the phone down the hallway to his office and he kept me waiting for 45 minutes. I know which of his children look like him, how old they are and he was prob trying to impress the person he was talking to which I think was a Pharma Rep, I cancelled 3rd visit and not sure what to do now. I am so glad these experiences didn't happen when I first was diagnosed and feel sorry for the newbies to these offices. Good to read up on what everyone is doing and hope we drop by often to keep this precious site open in Greg's memory

      about 1 month ago
    • Carool's Avatar
      Carool

      Bengal, I agree re preferring good female doctors to male for breast-related (and gynecological-related) problems. And I agree that adult females should be referred to as women, not girls. I remember how, back in the late 1960s, women fought to be referred to that way (I was one of them, at least from the sidelines).

      I’m very happy that there’s more activity here!

      about 1 month ago
    • Ashera's Avatar
      Ashera

      Bengal - So very sorry about the frequent changes. I realize now how lucky I've been. I also live in a rural area but am fortunate that the small hospital draws from everywhere in this part of the state and is solid. My 'team' has remained consistent. I feared I would lose some over the long Covid year - they became ragged looking and weary but they still remained.
      The thought of changing any of them causes immediate anxiety. I feel greatly for what you've endured.

      My oncologist, surgeon are both male, but the radio-oncologist I had, also male, was also lecherous, called his staff girls, and felt the need to be overly interested in my breasts during each weeks closed-door exam. I was too out of it all by that point in the game to even realize what was happening. I told both my onco and surgeon and they were quietly fuming. In short order - this man suddenly retired. Only issue I've had, but as I've healed, I realize it left a jagged ptsd-like reaction going anywhere near that part of the hospital.

      Hoping for you, your new doctor is professional and stays around. It's a lonely journey, this one we're all on, even with continuity of care. Glad we have this way of seeing familiar names!

      about 1 month ago
    • legaljen1969's Avatar
      legaljen1969

      I am incredibly thankful for the continuity of care with my "cancer team." Although my entire journey is still under two years so anything could change. However, I don't particularly anticipate any changes. I can definitely see the benefits to continuity of care in the cancer setting- not only do they know your history, they know YOU. That has been a huge comfort to me- seeing the same person all the time. When my nurse navigator suddenly stopped responding to my emails after being the most diligent person I have ever known, I finally got news that she had moved away. That's the only setback in terms of my care team I have experienced so far.

      As my husband is a military retiree and we are close to a Naval hospital, we are able to benefit from Tricare Prime and treatment at a military treatment facility (MTF). I know, some people have real hang-ups about military hospitals and Tricare (Tri-Not to- Care as some people laughingly call it) and if their experiences have been bad, I feel for them.

      Having been the beneficiary of this healthcare for over 25 years now, "continuity of care" is not a big part of my life. My PCM (primary doctor) changes every 2-3 years. Sometimes this is a really difficult thing and other times I am counting down the days until they transfer out. I have only gone to Tricare once and requested a change of PCM because the one doctor was very condescending and abrasive. It's pretty much a new staff almost every time I go to the doctor. Two of the nurses in the family practice clinic have been there for quite awhile now. I think they would prefer the retirees and their families get providers out in town anyhow. I am just on a waitlist for a particular provider and once they have an opening, I will move out of the Naval Hospital to make room for new patients.

      I like my current PCM at the Naval Hospital though. He is the one who insisted I get my mammo by which I was diagnosed. He is a very thorough doctor and will work with me to get any referrals I need. He is very proactive and he's not a big "pill" doctor. He is great about focusing heavily on education and preventive medicine. It has been almost 3 years now, so he's probably going to disappear pretty soon.

      about 1 month ago
    • legaljen1969's Avatar
      legaljen1969

      I feel bad for all of you who have had multiple care changes in your cancer journey. I hope something gets resolved.

      Ashera, I am so sorry to hear about your radiation oncologist. That's a terrible thing to have happen to you. I guess doctors are human too, and there are some pretty awful ones mixed in with the really great ones.

      about 1 month ago
    • MLT's Avatar
      MLT

      I have had a wonderful medical team, especially for oncology. My PCP is retiring, but trusting I will still be in good hands. I did insist that my oncology cardiologist be changed. He didn't seem to realize how my chemo side effects affected my ability to walk 40 min a day! I assumed the oncology title gave him the knowledge to understand chemo side effects. Relief not to see him again.
      Praying all goes well with your new Dr.

      about 1 month ago
    • legaljen1969's Avatar
      legaljen1969

      MLT, you have a specific oncology cardiologist? I didn't even know there was such a specialty. That's good to know. I would have thought the same thing- if he specializes in oncology and cardiology- he would know the side effects of chemo. Side effects can vary so much from person to person though. That said, if he wasn't meeting your needs or you felt you weren't getting the best care possible- I am glad you were able to switch doctors.

      about 1 month ago
    • petieagnor's Avatar
      petieagnor

      I've had good & bad results regarding Doctors. Right now, I have a good team; each one is caring. Now that I'm "grossly stable", I see the oncologist every third month after my CT scan. For 2 months, I see the Physician's Assistant. I've been to the local Urgent Care, too when I can't get into the Dr. Sometimes, a fresh set of eyes can pick up on something that a regular Dr. may miss. Change is sometimes a hard pill to swallow.

      about 1 month ago
    • triciab's Avatar
      triciab

      My first oncologist after diagnosis was so wonderful. When he left we were concerned about his replacement. We were right to be worried. He reviewed all of the choices we had made with the first oncologist and questioned every one of them. We finally had to tell him that we knew the options and unless there was something new and revolutionary about what he was suggesting to keep his opinions to himself as we had already decided what to do. He apologized at my last visit with him for making things harder.
      My 3rd provider is a nurse practitioner who also offers options but only if based on new findings. (I'd be interested to know what #2 wrote in my chart.) She has been very thorough in her examinations (not so much with oncologist #2) and asks about important things like mental well-being which was never addressed before. She listens to the answers too. So sometimes a new provider is a breath of fresh air. Hoping you get one who works well with you.

      about 1 month ago
    • Lynne-I-Am's Avatar
      Lynne-I-Am

      These letters are the Dear John letters of the medical field.l have received numerous such letters these past several years. Most recently, my gastroenterologist informed me , because of family matters, he was leaving his practice and moving back East. I have been seen by four different oncologists since my diagnosis in 2013. My original gynecologist oncologist and the one who performed my surgery and ordered my chemo treatments, received a promotion to head up a department in a different hospital miles away and you can not fault him for accepting that- he certainly deserved it. Gone for the most part are the days of Dr. Welby MD , a television series about a doctor who on occasion made house calls and knew his regular patients inside out. One of the sad realities of modern medicine is the lack of continuity of care, it is here to stay. This is why we as patients have to double check everything, get second opinions , and learn to be more assertive and diligent when it comes to overseeing our medical care. To answer your question- no, it does not make things easier to navigate.

      about 1 month ago
    • MLT's Avatar
      MLT

      legaljen 1969, Yes, the oncology cardiologist is who they use at my breast center. I also see an oncodermatologist. She has been great for my hand/foot syndrome from chemo.

      about 1 month ago
    • Lorie's Avatar
      Lorie

      I just finished talking to my cancer center in Tampa. They do have an oncology cardiologist dept but it seems that my having a need for a new heart valve in Oct. 2020, 5 years after breast radiation, cannot be directly attiributed to the radiation. I have been having "tired leg" syndrome when walking any distance so I thought maybe I could get into the onc cardio dept, Will have to wait til next month when I go to Tampa for my annual mammo and talk to a Dr. then. MLT thanks for enlightening up to the fact there is such a medical team.

      about 1 month ago

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