follow-up care...

mom3band1g
mom3band1g Member Posts: 817
edited June 2014 in DCIS (Ductal Carcinoma In Situ)

So, I 'fired' my original surgeon because her office refused to return phone calls and the way the treated me when I found a second 'lump' was awful.  I found a new surgeon for follow-up and liked her.  She did feel I needed MRI's every other year because of my margins.  I called her office with a question and they don't return calls either.  After my appt with her I asked if they called with appt reminders (because I don't write mine down.... don't ask, it's a head thing) and was assured they did.  Well, they don't and I stumbled across my reminder card the other day and I've missed my appt.  I feel like maybe I'm not supposed to have follow-up care.  No one returns calls, I never get appt reminders, etc.  Am I crazy to not bother with this whole mess anymore?  I cannot find a surgeon who gives a rats behind if you don't actually need surgery.  Please tell me I'm not crazy to not do follow-ups.  I think I've read that some women are told they don't need to be 'checked'?

· Share on FacebookShare on Twitter

Comments

  • sewingnut
    sewingnut Member Posts: 1,129
    edited October 2012

    I would definitely find someone to keep up with followups. This cancer is tricky stuff.  From your sig you had a large area of DCIS. You are your best adovocate. Offices not returning calls is wrong. On the other side, I worked in a Dr office and sometimes things get crazy and phone calls dont get made. I know its no excuse but things happen.

    · Share on FacebookShare on Twitter
  • Beesie
    Beesie Member Posts: 12,240
    edited October 2012

    Did you see a medical oncologist?  You might have better luck with follow-ups with him or her - for many surgeons, their job is done once the surgery and healing is over.  If you didn't have an MO, then maybe you can get one.  I think more often it's the MO who does the longer term follow-up, although some surgeons do it too. 

    I agree that some sort of follow-up should be done.

    · Share on FacebookShare on Twitter
  • mom3band1g
    mom3band1g Member Posts: 817
    edited October 2012

    Thanks ladies for your input.  Beesie - I did have one appt with a MO and after we decided I was not going to take Tamoxifen she said I didn't need to come back ever.  It seems they all feel I need follow-up care but no one actually wants to do it.  Just frustrating.  I have finally gotten my life back but every 6 months fear creeps back in.  I think I'm hoping if I don't have to go to the Dr the fear won't come.  I haven't even been able to find a gyn.  I have developed a very real fear of Dr's.  It's become very hard to make myself go, and then actually stay for the exam.  My BP goes through the roof.  To then be treated like crap makes me not go. 

    · Share on FacebookShare on Twitter
  • BLinthedesert
    BLinthedesert Member Posts: 678
    edited October 2012

    Hi Mom3, many women do not see a MO if they are not taking tamoxifen or having chemo.  Personally, and this is just my opinion, I think you need to either find another breast surgeon (who does do active follow-up) or a good nurse practioner who specializes in "women's health" -- many breast centers have such a person.  I am a little curious why your RO isn't following up with you.  For me, my RO said she will be following me "for life" - and for the next 2 years or so both she and my BS are trading off "feeling me up" every 6 months.  I was told that my BS will probably discharge me after ~2 years.   You need to see someone who specializes in follow-up with people who have had DCIS, and radiation therapy - both because they need to schedule your follow-up care, and you need someone who recognizes the potential for risks and side effects from both your diagnosis, and prior therapy.

    Best of luck to you, I am sorry you are having these troubles.

    · Share on FacebookShare on Twitter
  • mom3band1g
    mom3band1g Member Posts: 817
    edited October 2012

    BLinthedese - I don't see an RO because they canceled my appt. and I never got another one. 

    Yesterday my original BS office sent us a certified letter (I'm mad my dh signed for it..I wasn't home and would NOT have signed for it) .  It was basically a form letter to cover their own butts telling me my latest findings were bi=rads 3 and why had I not followed up with my surgeon blah blah blah.  If they had bothered to return my many phone calls they would know I tried.  If they had given me my appt reminder email and phone call even I would have shown up.  If they had not originally told me I scored a bi=rads 1 I would have not be so pissed now.  I know  bi-rads 3 is typically benign but my origianl lump was scored a 3 and did not show on ultrasound and only the actual lump showed on mri.  I tried to talk to my original bs about this and the new one.  Neither one returned my phone call.  I know this new lump is nothing....it hasn't changed in the year since I found it but I do find this letter to be so damn stressful.  It ruined the rest of my day.  I have had such a frustrating experience with Dr's and I just want it all to have never happened.

    · Share on FacebookShare on Twitter
  • BLinthedesert
    BLinthedesert Member Posts: 678
    edited October 2012

    Wow, that is horrible.  I hope you are able to find the follow-up, and dare I say, *care*, that you need - and should be able to expect.  

    · Share on FacebookShare on Twitter
  • dsj
    dsj Member Posts: 277
    edited October 2012

    Ironically, I came here today (after not checking in very much at all anymore) because i am having my annual mammogram tomorrow and am nervous. I am generally good about not worrying about stuff, until I am a couple of weeks away from the mammogram. I do see an oncologist because I take tamoxifen, but if I didn't I think I would do followup through a gynecologist (except that I don't go to one anymore). Tomorrow, I am asking them to send my mammogram results to the oncologist and my PCP, because he (PCP) is the onr I trust most to call me back.



    I know how anxiety-inducing all this is, but I really do think you should do follow-up. I know how much you wish all this had never happened. I really do. And that is why we have to do follow-ups.



    D





    · Share on FacebookShare on Twitter
  • mom3band1g
    mom3band1g Member Posts: 817
    edited October 2012

    dsj - I am the same way!  I really don't come here much at all....I've moved on (yea) except for my bi-annual freak out!  I hope all goes well with your mammo, I'll be thinking of you.

    My husband is not happy that I'm inclined not to see anyone but to me honest I don't even know what to do now.  I could call my original bs but I know how that will end up and I don't want the stress.  Just thinking about it is making my bp jump!  I guess I could call the new surgeon, but I'm pissed.  I don't want to call my PCP because she has some new rule that she wants to collect $200 every year for things not covered by insurance.  What?  That's a lot of money to me and we pay a lot for insurance.  So now I'm thinking I need a new PCP.  Great.  If we didn't have kids I wouldn't even care but they do need a Dr now and then.  Feeling very screwed by the medical world.

    If my bs could take the time to send a certified letter wouldn't you think they could return one damn phone call?

    I know part of the problem is me and my phobia of Dr's.  I know part of me is using this all as an excuse not to go to anyone.

    · Share on FacebookShare on Twitter
  • dsj
    dsj Member Posts: 277
    edited October 2012

    I just got the results from my mammogram, the third since surgery.  Everything is good: no suspicious masses or calcifications; come back in a year.

    Kathy, I know how frustrated you are, but I am guessing it's not really about the money.  Assuming you do have $200., then I think you should spend it. It is worth $200., to know that you are okay and that you don't have to think about this for another year.  You have already done so many brave and difficult things to ensure that you are healthy for your children; you should do this too.  People like you and me need to have regular follow-up.

    (sorry for nagging but I feel like January 2010 gives me some solidarity points)

    D

    · Share on FacebookShare on Twitter
  • mom3band1g
    mom3band1g Member Posts: 817
    edited October 2012

    DSJ- thanks for the kick in the arse I needed.  I sucked it up and called.  I go next Tuesday.  Thank you. 

    So happy to hear you got a good report!!!!!  YOu don't need to go back for a year??!!  That is awesome!

    · Share on FacebookShare on Twitter
  • dsj
    dsj Member Posts: 277
    edited October 2012

    K,



    I see the oncologist every six months, and I have a professional breast exam every three months (oncologist alternating with PCP), but annual mammogram. Maybe it's because I was diagnosed from calcifications and a single tight focus of them. I am still nervous at mammogram time (especially since my diagnosis started with a mammogram), but it feels really great when it's over. BTW, my oncologist still hasn't called me back with results, but my PCP phoned them to me yesterday. (I love him.)



    D

    · Share on FacebookShare on Twitter
  • dsj
    dsj Member Posts: 277
    edited October 2012

    Forgot t he most important part!



    I am so glad you are going next week. Let me know please how it goes.



    D

    · Share on FacebookShare on Twitter
  • mom3band1g
    mom3band1g Member Posts: 817
    edited November 2012

    dsj= I will and thanks again.  Even if you try to pretend it all never happened....it did.  Are you taking Tamoxifen?  Can't remember.  I so understand about being nervous. 

    · Share on FacebookShare on Twitter
  • mom3band1g
    mom3band1g Member Posts: 817
    edited November 2012

    dsj - Done!  I finally got an answer as to what that silly little lump is.... a fat glob that got cooked during rads!  Only took a year to get an answer!   I have an MRI for next month but I know it's just routine and all is good!  I had a very good visit with this surgeon and do like her.  I think their office was in transition and my call and apt.  got lost in the shuffle.  Annoying but whatever.  I'm done!  Thanks.  Sigh of relief.

    · Share on FacebookShare on Twitter
  • dsj
    dsj Member Posts: 277
    edited November 2012

    Kathy, I am SO glad. It's a great feeling to be "cleared," isn't it? You can just kind of let it go, at least for a while.



    D

    · Share on FacebookShare on Twitter

Categories