Dear doctor, I wish ...

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mawhinney
mawhinney Member Posts: 1,377
edited June 2014 in High Risk for Breast Cancer

If you could sit down and have a constructive chat with your doctors, what would you suggest?

Dear doctor,

 A picture is worth a thousand words. I wish you had shown me realistic photos of implant reconstruction and told me that the process would take almost a year to complete.

Please do not triple book your appointments. My time is as valuable as yours!

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  • Makratz
    Makratz Member Posts: 12,678
    edited March 2009

    Oh, I hear you!!

    I only had a lumpectomy so I can't relate on the photo's.  I get so pissed when doctors make us wait!!  Why??  We should charge them a late fee.

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  • lexislove
    lexislove Member Posts: 2,645
    edited March 2009
    I agree...especially since the Hospital parking lot charges $2.50 an hour. Yell
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  • smithlme
    smithlme Member Posts: 1,322
    edited March 2009

    I wish, given my family history, that one of them would have tested me for the BRCA gene earlier...

    Linda

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  • AlohaGirl
    AlohaGirl Member Posts: 213
    edited March 2009

    I wish I'd had a chance to change from a hospital gown back into street clothes and grab a pad of paper to take notes before you told me my mammogram results warranted a biopsy (but thanks for recommending the biopsy!).

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  • mmm5
    mmm5 Member Posts: 1,470
    edited March 2009

    I wish they would take all the mean, short tempered, front desk girls that know nothing about cancer away from the phones and check in...........!

    Also don't assume because I am female, a mother and blonde that I am dumb, explain what you are doing, ordering etc, I get it and in many instances have to bring you my pertinent info.

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  • Deirdre1
    Deirdre1 Member Posts: 1,461
    edited March 2009

    I wish you hadn't lied to me about what you were able to do as far as my reconstruction was concerned so as to draw me away from another plastic surgeons. (Like promising me you were on the list of "approved" doc's who could use fully cohesives, and then telling me you would not make any new incisions after the mastectomy only to wake up and find four new holes!)

    And when I tell you something is wrong please pay attention, I know you hear problems all day long but NEWS FLASH THAT"S YOUR JOB!!!  Do that job or get another so that many of us are not left with the ruin that you call medicine!

    oahhh that felt good thanks mawhinney!!

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  • leaf
    leaf Member Posts: 8,188
    edited March 2009

    Ah mmmm and Deidre1- I sure second your complaints. 

    They really need to get a more sympathetic receptionist at the place that gives pelvic ultrasounds.  Maybe she would play a different tune than talking to her friend about the latest cool guy when I am delayed another 30 minutes (I followed directions about drinking my water, and the patient before me didn't) holding 1000 ml of water in my bladder that I'm not supposed to void. 'Oh, you can go to the bathroom and void just a little bit'. (They control the key to the bathroom.) I'm rocking back and forth in my seat, trying to avoid voiding in my chair.  At this point, if I started to void, its all or none.  This must happen frequently-have some good way of handling scheduling.

    I hate docs that lie.  That is so WRONG! And on top of that do not respond.

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  • hbcheryl
    hbcheryl Member Posts: 5,113
    edited March 2009

    I wish you would manage your time in a better fashion - I make my appointment for 9:15am I get there at 9:00am am ushered into the room at 9:30am and at 10:45am you breeze in and yes I heard you wandering up and down the hallway chit chatting and laughing with all the gals in the office.  I would understand if you were a surgeon and had been at the hospital but you're not.  I know you have a lot to do but so do I, my time is just a valuable as yours.  I thought by making an earlier appointment I would get in and out but I think next time I'm going for the 4:45pm appointment cause I know you sure want to get out of there at a reasonable hour.  Also I'd rather sit out in the waiting room for an hour rather than half naked in a room with my blood pressure rising by the minute.

    Sorry for the rant but I can't tell you how many hours I've sat half undressed in  waiting room in the past six months blahhhhhhh

    Cheryl

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  • hiker
    hiker Member Posts: 22
    edited March 2009
    I wish it wouln't take 2 1/2 hours for you to start my chemo.I came in yesterday for my blood work, you knew I was coming, I arrived on time, so why does it take so long to get the drugs up from the pharmacy. Next time I'm taking a walk in the park after I check in, call me on my cell phone when you are ready for me.  If you have a problem with that, have the hospital administrator call me. ( I actually said that, did go for the walk.....guess what?  I only have to wait one hour now. whoopee!)
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  • leaf
    leaf Member Posts: 8,188
    edited March 2009

    I got a whole new look on patient's care when I took my friend to her chemos and rads.  We would have an appointment for a blood draw, and would have to wait 1.5 hours to get the blood draw.  I mean, how much prep do you need for a blood draw, unless there's a line for blood draws? We often spent 8 hours there between the blood draws, chemo and radiaton. 

    I'm a hospital pharmacist, and though I've never worked in the cancer center, know a bit what goes on with preparing chemos.  They do have to check your blood work to make sure its OK, and often check with the doc if there are questions.  This can especially happen if there are questions about the lab values. It can be hard to get ahold of the onc if (s)he's busy seeing someone else. There are big ugly equations which have to be double checked.  Someone has to get all gowned up with chemo gloves to make the chemo (you feel like the Michelin man).  I don't know why they couldn't just use the last value if your height and weight and lab values aren't significantly different from the previous chemo. Sometimes they haven't ordered enough chemo.

    But that said, I don't see why there is any reason why you couldn't take a walk in the park while this was being done, and get called on your cell phone.

    Once it took the pharmacy a week to get my friend (with terminal cancer) her routine pain medications at a local pharmacy.  How are you supposed to go a week without your pain meds?

    I'm so sorry this happens.
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  • taraleec
    taraleec Member Posts: 236
    edited March 2009

    I wish you would have told me, my option for  later mastectomy and breast reconstruction would be limited/change after I have radiation, BEFORE I HAD THE RADIATION!

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  • taraleec
    taraleec Member Posts: 236
    edited March 2009

    hbcheryl:    DITTO!   And in a paper vest which makes you all the more cold.

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  • monee
    monee Member Posts: 91
    edited March 2009

    I wish you had paid more attention to the lump when I showed it to you a year ago.  I might not have had to do chemo.

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  • hbcheryl
    hbcheryl Member Posts: 5,113
    edited March 2009

    Ditto monee:  I had ultrasound 2004 for calcs they just said you're okay I went for mamos each year then left it 18 mos and whammo - but then I get copies of all paperwork and report from radiologist back in 2004 said I should be watched closely - no one ever told me or gave me a copy of report I would have been more diligent, I just went on my merry way...

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  • dreamwriter
    dreamwriter Member Posts: 3,255
    edited March 2009

    My first oncologist would not discuss test results with me.  And when I heard that the pleural effusion was on the test I had a month ago and was being treated now... they actually had a head doc come down to say I was not having a panic attack.  Hello people, pleural effusion both lungs.... duhhhhhhh.  And then the experience of a chest tube insertion.... OMG.... and the thoracic surgeon put in the bliomycin... i know that is spelled wrong... but it is a chemo drug, I thought my lung was gonna pop right outta my chest, it was so so so painful.  And then they repeated it all for the other lung.... and it did not work....... OMG.....

    So I changed hospitals completely.

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  • mzmiller99
    mzmiller99 Member Posts: 894
    edited March 2009

    Oh, Dream - how awful!! 

    That is worse than my experience, but I would like to tell my docs not to tell me "This won't hurt"  or, "You won't feel this", unless they've had it done to them previously! 

     If they haven't had a wire jammed into their boob with no pain meds etc., then they have no business telling me what I do or don't feel!

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  • Emily2008
    Emily2008 Member Posts: 605
    edited March 2009

    ...that I didn't have to do so much research on my own to figure out that:

    A.  A gene test would have been a super idea (I'm BRCA pos-- Go figure!)

    B.  Ditto Taraleec on the bit about recon after radiation.  Had to discover that one on my own, which made me choose mast with recon rather than re-excision with rads.

    C.   That my TRAM side would be so flippin' big I'd look like a lopsided Dolly Parton.

    D.  That I'd need revisions (see C above)

    E.  That the tissue expander on the other side would feel like a metal plate digging into my ribs for weeks on end.

    Oooh, this feels so good.  Who needs to pay for therapy when we can come here?

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  • otter
    otter Member Posts: 6,099
    edited March 2009

    Y'all are going to hate this, but...

    To my surgeon:  "Dear Doctor:  I wish all women with a suspicious lump that turned out to be cancer could be treated by a surgeon as skilled, thorough, conscientious, and patient as you have been."

    To my med onco:  "Dear Doctor:  I wish everyone's oncologist listened as carefully as you do, had your wry sense of humor, and was as willing as you are to answer every single one of my questions--including the hypothetical ones."

    otter

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  • digger
    digger Member Posts: 590
    edited March 2009

    I wish just one of my doctors, before cutting off my breast and then inserting this plastic shell in my chest, blowing it up and then sticking these permanent balloons in me, had taken just a moment to look me in the eye and ask:  so, how are you feeling about all of this?  That would have been really, really nice.  It's been one hell of a traumatic experience without one nod from them that perhaps it might have affected me on more than a just physical level.  To me, the operation may have been a success in their eyes, but they killed the patient.

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  • Deirdre1
    Deirdre1 Member Posts: 1,461
    edited March 2009

    Otter:  It's good to hear that someone had a GOOD experience..

    Digger:  That's why, when I'm asked,  I always recommend a therapist BEFORE anyone get this kind of surgery!

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  • mkd1061
    mkd1061 Member Posts: 37
    edited March 2009

    Dear Doctor,

    I wish you would realize that sitting me in the exam room, half undressed with a paper gown on and then making me wait 45 minutes does not change the fact that you are late!!  Give me credit for understanding that some patients might need a little more time with you given the difficult news you are giving to them.  I might need that extra time on one of my visits so I do understand. Let me have some dignity...and warmth and sit in the waiting room fully clothed!!

    I also wish you would point out this website to every woman/man who comes into your office that is going thru some type of breast scare!  I'm thankful every day that my sister who has gone thru this told me about this site. I have received more realistic information as well as such compassion and support from everyone on here it makes me sad to hear about the women that don't know there are sites and women out there that are willing to share their experiences.

    This really is better than therapy!   What a great thread!

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  • otter
    otter Member Posts: 6,099
    edited March 2009

    What is it, with these paper gowns?  I thought my cancer center was bad, using cotton hospital gowns that overlap a little and tie on one side.  They want the gown tied in front for breast exams, which results in my remaining breast trying to peek out through the gap between the two ties...  (I wasn't going to complain about that, 'cause in the grand scheme of things, it isn't so horrible.)

    otter 

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  • anianiau
    anianiau Member Posts: 182
    edited March 2009

    I wish that your internal medicine group practice would hire REAL nurses--the kind who are registered nurses--or at least one for the office or practice.

    I am tired of dealing with the M.A. (medical assistant) personnel you do hire. I am very uncomfortable having someone with such limited training interpret my reason for being in your office on that particular day and summarize it for my official medical record. Let me write it myself--it's my medical record, after all. Or let me tell it to you.

    I am uncomfortable with having that same M.A. do the EKG rhythm strip--especially when she has a hard time determining where to place the leads. Has she never had training on how to deal with a mastectomy patient? I suspect not! It bothers me that she can't seem to understand why I insist on waiting for a minute or two before letting her take my blood pressure--or why I refuse to let her take it on my left arm. I resent having her take my temperature inaccurately, jamming the little tube into my ear canal so that it reads the side, not the eardrum. Maybe your office should stick to oral thermometers!

    I know how limited your time with me is, so I bring a printout of my current medications so as not to have to waste precious minutes reviewing my meds while you enter changes into my electronic medical record. I arrive on time and bring up the reason I am there right at the beginning of the office visit. So, is it too much to ask for some plan of action on dealing with the problem that has brought me to your office?

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  • kmccraw423
    kmccraw423 Member Posts: 3,596
    edited March 2009

    I really, really sympathize with you.  Many, many years ago I went to a gynecologist who spent however much time you needed with him.  As a result, of course, he was always backed up.  From then on I always brought a book to every doctor's appointment or scheduled test or procedure.  I also bring a snack or a cup of coffee and just make myself to home.

    Twice I had medical files lost which necessitated an additional EKG and blood work.

    I must say my breast surgeon took all the time I needed to discuss my options and she did not try to sway me one way or the other.

    We all need to manage stress and nothing stresses me more than people who are always running late so I just amuse and distract myself.

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  • webwriter
    webwriter Member Posts: 535
    edited March 2009

    Dear GYN #1: I wish you would seriously consider giving up your GYN practice and go strictly to OB, which appears to be your forte. You were wonderful with the pregnancy and birth and I'll never forget the care you took with me during that time. However, when you realized there wouldn't be any more children and that I was having serious problems, the loss of interest was palpable. The anti-depressants weren't what I was after. I begged you for three years to help me out with my hormones. Um, that birth control pill thing? Not a good idea. And considering you missed the lump 3 months before my DX, I'm thinkin' you should stick to swollen bellies and give up the boobs.

    Dear GYN#2: I wish you had been on top of my case with your staff. Promising me three proceedures in two days seemed like a lot. I knew that when I asked it. That's WHY I called so many times. That's WHY when conflicting information came down I was on it within minutes. Your screw up cost me valuable months between mammo and biopsy. I too might have gotten away without chemo. Oh, and that "doesn't matter, we're taking it out anyway thing?:" That's not a great answer when someone wants to know WHY they are having so much trouble. Turns out it did matter. It's all still "in" because I have this OTHER pesky problem to work out. Speaking of that "other problem," just so you know, it WAS a good idea for me to stop taking that birth control #1 gave me. You see, I had this lump. Remember that mammogram you got from his office? The one that caused you to send me to surgeon #1?

    Dear Surgeon#1: I wish you had looked me in the eye and told me the truth: that you were not interested in me, my case, or any of my questions. When my husband put his foot in the door because I was still speaking to you, he didn't REALLY think you'd go ahead and walk out of it. It would have been nice to know, upfront, that you weren't really up on the latest in this particular field. When I requested mammosite prep during surgery you should've told me then that I needed a new surgeon. You too cost me valuable weeks when I belonged at a bigger and more specialized facility-- and you knew it from my line of questioning. Or you would have, if you'd stuck around long enough to listen.

    To all my fired doctors: I wish for you to come upon patients every day that have become as educated (mostly through this site!) and pro-active as I have. I wish for you to no longer take it for granted that you are as empowered as god in making decisions over my life. I wish for you... a reality check, just like the one you gave me.

    Dear Surgeon's #2 and #3: Thank you for taking so much time with me, for cleaning up the messes your predecessors left and for helping me choose the right path for me as an individual. Thank you especially #2 for having grace when delivering bad news, doing such a FINE job on my boob and sending me to Onco #1. You were right. We're a GREAT match.

    Dear Onco: You're a nut case. I love you. But seriously, quit feeling Scotty's Masterpiece Scar and listen to me about this Neulasta thing, okay? You admitted I was right about the rest of it, now get serious and admit I'm right about this too. Have more than a glance at the bloodwork. I crashed bad you know. I don't want that again. Got it? Or should I bring you more studies and print outs? See you tomorrow! Oh, and get Nursie ready. She says she has to sleep a bit longer before my days for some reason. Might I be running her out of sarcasm and angst? BwAHAHAHA! ;) 

    (Updated: Dear Onco: Thank you for not making me give you the above note. Thank you for the extra meds, for not making me feel like a whiner and being as concerned as me about what the on-call did last week, and for being proactive about the rest of my treatments. I knew I loved you for a reason! Oh, and good job with Nursie. She was TOTALLY on her game today!)

     

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  • runalot08
    runalot08 Member Posts: 163
    edited March 2009

    I wish all doctors period took the opportunity to read boards like this.  They may gain a perspective impossible to obtain by merely seeing and diagnosing/ or missing the diagnosis.  They would see how much frustration is built up by their actions/ inactions.  They may see people as human rather than Mrs. 0900.

    They should read all the threads where people list thier stories and symptoms.  Learn how they are different in most all women and not as text book as they think.  I bet if they did that they would wonder a lot more about the woman who presented with "atypical symptoms".  

    Oh, and who ever mentioned the receptionist who needs a clue...I am with you!

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  • Brenda_R
    Brenda_R Member Posts: 509
    edited March 2009

    Dear Doctors, I wish that at least one of the 3 of you would have give me the bone scan the pet/ct report suggested as correlation, so I wouldn't have had to go for 6 months thinking I was Stage 4.  One of you even put that "stage 4" in writing. Shame on you.  Even after I asked all 3 of you if I should be getting the bone scan,  you told me no I didn't need it, the pet/ct was enough. It took my first visit with my Rad Onc, to get a bone scan and find out I didn't have bone mets.

     To my PCP, I wish you would have taken me seriously when I told you my hips, legs and back hurt badly. Again it took my Rad Onc to order the MRI that showed multi level disc disease, spinal stenosis, and a perineural cyst. Can you also tell a certain nurse that you are the doctor, and you should diagnose me and not her? and you should talk to me about what meds I need and not her? 

    On the flip side, to my PCP, thank you for being a caring doctor, at least as long as you thought I was stage 4. After you realized I was instead stage 3, it was like a light switch flipped and you no longer had time for me.

    To my Onc, thank you for writing off the cost of a drug that I couldn't afford. You saved my life. 

    To my surgeon, thank you for being aggressive in surgery and taking a large portion surrounding my lump. You got clean margins, and that meant a lot to me. 

    To my Rad Onc, thank you for ordering the scans I needed. Thank you for writing off what the insurance wouldn't pay, so I didn't have to go somewhere else. Thank you for knocking out the cancer in the IM node, that couldn't be removed.

    I am mad at some of you, but I am also greatful to all of you. I hope you understand.

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  • shelloz1
    shelloz1 Member Posts: 405
    edited March 2009

    Dear Doctor, I wish you would have used your head before you said this:

    After my lumpectomy (with staples) I had holes between them, not to get graphic, but I had stuff oozing out and my drain wasn't working (because there was air escaping from the holes).  The doctor released me with the holes, said everything would be fine, go home and it will heal.  After 2 weeks, the holes got bigger, he had to restitch the whole incision.  After it started healing I had a horrible scar, it looked like it healed with a big gap between where he stiched it, it was awful (still is).  When I went to him and asked why it looked that way, he said "Better that then the holes right"  I looked at him in disbelief, I wanted to say well it would be better if you had that on your penis right.

    Shelley

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  • mradf
    mradf Member Posts: 398
    edited March 2009

    mawhinney and moderators:

    Get this to a publisher!  I just happened to find a book on my library shelf the other day titled: After the Cure, The Untold Stories of Breast Cancer Survivors.This thread could be the precursor to that.

    Be well,

    Maria

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  • anianiau
    anianiau Member Posts: 182
    edited March 2009

    Dear Doctors--ALL of you, but especially the male gender--

    I wish you would be required to strip down and put on skimpy paper garments the next time YOU go for a medical check up. That would mean paper panties (or just one of those little paper drapes) for guys, or a skimpy paper gown with a too-small paper sheet for the ladies...Oh, and the examining room should be set to 10 degrees below normal...

    I wish you would then have to wait AT LEAST half an hour. And your choice of magazines in the examining room should be limited to half a dozen of whatever 'zines would please you least.

    When the doctor does finally come in, I wish the doctor would introduce him/herself as "Dr. Last Name" but greet YOU by your first name.

    I wish your doctor would share any news regarding test results while you are still dressed all in paper--though I don't wish any bad test results on you.

    I just want you to experience what most of us have.

    Best wishes from just another patient

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