Anyone else decide to stop some follow up appointments?

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Mavericksmom
Mavericksmom Member Posts: 635
edited July 2019 in Breast Reconstruction

I’m wondering if anyone else decided to stop follow ups with some of their doctors.

I currently see three doctors, Breast Surgeon, Plastic Surgeon, and Medical Oncologist.

I’m considering stopping my plastic surgeon visits even though I still have skin wounds caused by having radiation the first time I had cancer. Why? Because NOTHING happens. It’s an hour drive, I don’t even see the doctor, I see the PA (but my co-pay is same as a doctor). He looks at my wounds, says “the skin cells are starting to fill in, see you in a month.” Never since my DIEP surgery in January has anything else been done at a follow up visit. I won’t have more surgery so what’s the point? Ironically I never wanted reconstruction and really hate how it turned out.

I’m also thinking of stopping my follow up visits with the breast surgeon. Same reason, I don’t see any need.

I will absolutely continue seeing my medical oncologist and my gynecologist for regular appointments.

When I had breast cancer the first time I was told I could be followed up by either my medical oncologist or breast surgeon and I chose my MO. This time they all tell me to make another follow up appointment

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2019

    I, too, am getting tired of running to all the doctors. I keep key appointments, but often reschedule so they are much further apart.

    They scheduled a breast mri for me, and a mammogram. I went for the mri the other day but couldn't take it because of some recent neck and back problems. So when I called the doctor's nurse and told her what happened, she said that I really didn't have to have an mri; the mammogram was more important. I didn't say anything but am livid. I wonder how may extra appointments they give us that we don't need?!?!?!

    Cancer is not joke so followup appointments are important. But I'm no longer letting them make me run-around constantly. I'm going to question them more as to why I need this or that appointment before I jump right in an say yes!

    I don't know your situation other than you've told us, but if someone said to me ""the skin cells are starting to fill in, see you in a month," I probably wouldn't come back for several months unless I was experiencing a problem.

    It's 13 months since I was first diagnosed with cancer and some of the running just has to stop. It tires me out, as does the Anastrozole I'm on. I want my life back.

    If I had more serious cancer, I might be singing a different tune...but I'd still get a handle on it.

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  • CBK
    CBK Member Posts: 611
    edited May 2019

    Mavericksmom

    That sounds awful you hate your reconstruction and you see PA that tells you nothing. I know I practically lived at my PS the past two years. But I always saw my surgeon and she kept a close eye on my healing because a had all sorts of crazy twists and turns. But I was dead-set on accomplishing my reconstruction to the end and to my liking.

    Are they monitoring you for possible infection or necrosis? Maybe diep ladies would have more insight on that.

    I think the breast surgeon can be a little overkill with the MO if you are seeing your MO as much as I do. But my MO doesn't really physically examine me, I find that odd, just asks a lot of questions, orders bloodwork, and follows tumor markers. Breast surgeon physically examines what's left and whats new!

    Maybe In your case maybe be straight up with PS and tell him you hate your reconstruction and you’re not interested in anything else. He might think you are in for a long breast reconstruction tour; which you aren't.

    Yes, I think we do get exhausted with all the appts, but I guess in an odd way they make me feel safer as well.

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  • SummerAngel
    SummerAngel Member Posts: 1,006
    edited May 2019

    I didn't have a DIEP, but once I was finished with reconstruction I never saw my PS again. I also never saw my breast surgeon again after she removed the staples from my surgery. I only see my MO, and from what I've read that's a pretty common scenario. I would be especially angry about it if I were dismissed like you've been at your appointments, or if unnecessary tests were being ordered.

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  • Mavericksmom
    Mavericksmom Member Posts: 635
    edited May 2019

    Thank you all for your thoughts. I will see my MO at the end of June. She examined me at my first visit with her, this will be my second. If she examines me again, I will ask if she does that at all visits. If so, I will cancel my BS visit.

    I still think I have a hernia from the DIEP surgery, but the PA checked a month ago and said no. I need to have a bladder ultrasound done for a non-cancermedical issue and I think a hernia might show up on that. I have an appointment with my urologist before I see the plastic surgery PA again. I’m going to see how that goes and then decide on my PS appointment. I have a feeling I will end up canceling my appointment as long as I am certain I don’t have a hernia.

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  • Mavericksmom
    Mavericksmom Member Posts: 635
    edited July 2019

    I saw my MO the last week in June. I had cancelled my BS appointment, but then rescheduled it. My MO said I should be seen by both her and my BS. Still not sure why, but I guess having two people monitoring my health is a good thing.

    I am feeling "doctor over-load" as my MO wanted me to see a lymphedema therapist (appointment today), an oncological gastroenterologist, and have RISK assessment done again because she said there have been a lot of gene defects discovered since I was tested in 2003. I am BRCA 1 & 2 negative, but two of my three sisters and my mother and cousin had breast cancer.

    She also wanted me to see someone for my depression. How do I fit that in?????

    It isn't as if BC is our whole life. I have so many non-health related appointments as well.

    One day at a time.

    Sad

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  • godisone
    godisone Member Posts: 100
    edited July 2019

    i share similar emotions, i do not like my gynecologist as well, every visit they come up with some kind of abnormality that has happened to me and seriously i am not anymore surprised, i guess i will only be surprised when they say everything is good with me and i need not to visit next time..so, dear i know how it feels like a waste of time, you can talk to your doctors about this, if healing is in progression then they can just let the healing happen and call you later than sooner. maybe your doctor has planned a treatment plan for you accordingly and you not showing up at the appointment might delay the process of your treatment plan. i would definitely want you to go on your next appointment and let them know about your plans. Good luck, hope it helped.:-)

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  • Mavericksmom
    Mavericksmom Member Posts: 635
    edited July 2019

    I actually have an appointment with my plastic surgeon this morning. I assume I will see the PA again and not the PS. When they schedule it is all listed for the PS but I haven’t seen him since March.

    This will be my last appointment. I am as healed as I will ever be, not to my liking but nothing I can do about that.

    I still carry a lot of anger at being refuse a BMX without reconstruction. Someone on this message board opened my eyes to the possibility of going elsewhere for a second opinion and having a prophylactic mastectomy. I totally trust my gynecologist and will discuss it with her when I see her in the fall. I am looking at having that done next summer if I decide to go that route.

    I am thankful for this community because of the support and reminders that we all have options!

    I will see my BS in a few weeks and I plan to be up front with him. I am no longer the woman in shock that he saw in December and January! That appointment will determine if I continue to see him or not. He is a very nice man and while that is a good thing, I need someone who listens to me and doesn’t simply tell me what I need to have done! I no longer feel I’m stuck having him for my doctor

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  • GraceB1
    GraceB1 Member Posts: 213
    edited July 2019

    I just cancelled a follow up appointment with the plastic surgeons office. My PS left the practice last month and all I have seen for the last two visits is the PA so they're off my list of things to do. I dropped the Radiologist two years ago. He wanted followups for 5 years. Nice guy but a waste of my time. He admitted he just wanted to see good outcomes and healthy patients. Only saw my surgeon for followups until the one year mark and then it was the PA. Dropped them too. My MO left last year but I did follow up with a new one due to another medical condition that they thought might be due to a reoccurrence (it wasn't). I'll continue with the MO for bone density scans and infusions.

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  • Mavericksmom
    Mavericksmom Member Posts: 635
    edited July 2019

    I had my PS visit and it was very informative. I saw both PA and PS and will see my PS again in March 2020 to discus surgery that summer. My PS is part of the team I had and he was very understanding and I think I am ready to have a meaningful conversation with my BS, whom I will see in a few weeks. I will either have a mastectomy and reconstruction ( not a DIEP since that is a one time and done surgery) or just do a lift in my right breast. At least I have time to gather more information and lose weight so whatever surgery I have it will be one I approve of 100%!

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  • Runrcrb
    Runrcrb Member Posts: 577
    edited July 2019

    I just saw this thread and it seems you have gotten what you wanted. For what it’s worth, I haven’t seen my BS since he removed my portacath in February 2017. I see my oncologist twice a year. I see my PCP annually and for anything else i need. I love my PS. I saw him six months ago and may see him again but haven’t made an appointment. My last surgery was a year ago.

    I am choosy about where I spend my copays since everyone other than my PCP is a specialist copay at twice the cost! Not to mention my time.

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  • Mavericksmom
    Mavericksmom Member Posts: 635
    edited July 2019

    runrcrb, not sure I got what I wanted yet, but I felt like my voice was heard and that I am moving forward.

    I hear you about specialists! I have the same situation with co-pays.

    I have an excellent urologist, non-cancer issue. He did a procedure in his office last fall and he saw something in my bladder. I could see it on the screen too. He wanted me to repeat the procedure in 6 months. Well that was before my cancer returned so I asked to reschedule from April to June due to my surgery. That was fine, but then they called and canceled and rescheduled for July. He and his partner worked out of 2 hospitals and their offices were at the hospitals. Well, as of July first they closed the one office where I had the procedure and moved to the other one. That hospital (or maybe the state, as it is in a state that borders the one I live in) won’t allow the procedure to be done in the office so now instead of a $25 co-pay I will pay $250 for out patient procedure!

    I need to stay with this doctor because he knows what he saw, and I trust him. I will just pay it and not dwell on it. I’m pretty sure nothing more will need to be done, so I won’t need to see him again for a long time, if ever.

    I really feel like I have doctor overload. 😐

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  • edwards750
    edwards750 Member Posts: 3,761
    edited July 2019

    I totally agree about appointment overload and that some follow up appointments are just unnecessary.

    I haven’t seen my MO since 2017. My 5 years was up and all she did was check on how I was doing on Tamoxifen anyway and I stopped taking that at the 5-year mark.

    I used to never question follow up appointments but some doctors are just over the top with scheduling them for everything. If it’s somethserious and I need to be monitored then that’s a different story but otherwise I’m just not going.

    My internist schedules 6 month checkups instead of annual exams. I asked why and was told that’s just what she does? Seriously? I’m not going to do that either. I will have bloodwork done. Obviously if I have the need I’ll schedule an appointment.

    I’m sure we are all tired of medical appointments. Some we just can’t dismiss like annual mammograms but we can certainly decide whether we need to see a doctor or specialist.

    Diane



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