Angry b/c I'm "a few years too early"

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sweatyspice
sweatyspice Member Posts: 922
edited June 2014 in DCIS (Ductal Carcinoma In Situ)

I need to rant.

I had an appointment at 8am Weds am with one of the several surgeons I've seen, my favorite of the bunch.  I'll make a different thread about all of that.  But....

Because I don't want to be late for work, I make the appointment at an ungoldy hour, because it's a long commute from my house to the hospital.  I wake up at 5, shower, don't take the time to wash and dry my hair, leave the house at a few minutes after 6.  Arrive about 7:45. 

I'm told that the surgeon is visiting with 2 women who had "big surgeries" the day before.  I think, "OK, I'm fine with that.  They should take precedence."

About 8:15 or so, his secretary comes back to tell me he's in his office.  Then she comes back again to tell me he can't see me till 9:00, he still has to take care of stuff with these other women; if I like, I should go and get something to eat.  Now I'm getting annoyed, but I go to the cafeteria for some breakfast.

I come back at 9, I'm told to wait.  I go to the waiting room.  After awhile, one of his nurses comes back to get another patient, she stops to say hi, gives me a hug, goes through the "How are you's," tells me the surgeon is in a meeting. 

I think, he's in a MEETING?????  Seeing women who had surgeries the day before is one thing, but me sitting there because he's in a MEETING????  Now I'm getting pissed.  Why did they freakin' schedule me so damned early - his sec'y had to know about the meeting!!!!!

Somewhere around 9:30 someone I'd never met before came to get me and put me in the exam room.   I changed into the lovely gown, in came a nurse I hadn't met before, who was wasting my time asking dumbass questions which there was no need for.  I HATE that whole process, it's almost always a huge waste of time.  There have been very few times when the intro crap with the nurse or PA was worthwhile.

Soon after, thank God, the surgeon came in, did a quick exam - I'd found a lump recently, since I now obsessively feel myself up, he said it was normal breast tissue and not to worry.   He apologized for keeping me waiting so long, he was really excited, he'd just come from a meeting - I don't know if it was specifically on DCIS, but might well have been - about an upcoming clinical trial where instead of doing surgery they inject some chemo or something into the duct.  He was really excited at the prospect of all this (I don't blame him for that) and said that I'd gotten this disease a few years too early, that if the trial was open now I could be a pioneer, blahblah blah blah.  

I wanted to slap him.  Seriously bitch slap him.  I don't remember exactly what I said, something along the lines of  I REALLY wasn't interested in hearing about this (since he was recommending mastectomy for me).

I got dressed, he asked me to meet him in his office so we could talk, I waited for what seemed like another 30-45 minutes before he came in.  Again, he apologized for making me wait.  (I guess by that time his schedule was seriously backing up.)  We had a long talk which I'll probably make another thread about.   In the course of that chat, he "got it" about why I would be really upset by his exuberance about a treatment I can't have.  He apologized for "rubbing it in."

But - WHY AM I LIKELY TO HAVE A MASTECTOMY WHEN A 'CURE' IS APPARENTLY SO F*ING CLOSE????  WHY IS LIFE SO GODDAMNED UNFAIR????  I'M SOOOO ANGRY.

And I didn't make it to work until 11:30.  Lovely.

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  • spar2
    spar2 Member Posts: 6,827
    edited November 2009

    So very sorry this happened to you, hope it is a one time only thing.  Don't blame you for being angry, I would too.  I still think it will be a few years before this happens, it was on the news the other night and they were working on rats.  I think he is jumping the gun that we are close to a cure of course close to a cure means tomorrow to me but to the one doing it it means years.  Also why is he recommending a mastectomy instead of a lumpectomy for DCIS Stage 0.  I think I would get another opinion.  God bless you girl, just remember you have support here whenever you need it.

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  • flash
    flash Member Posts: 1,685
    edited November 2009

    Sweaty,

    Sorry to hear about your latest doctor appt.  Any luck with the other names?  I hope it all goes well for you.

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  • sweatyspice
    sweatyspice Member Posts: 922
    edited November 2009

    I know he means years, I'm just pissed that this didn't all happen to ME 5 years from now. 

    I didn't call Cookiegal's names b/c if I ended up with mast/recon, I'd have ended up with the same PS team as I would with the surgeon above.

    The lump/mast debate still rages however, and that's a topic for another thread.  I suppose Cookie's names might make sense for that route, but more investigation into that wasn't part of my thought process at the time - I was mostly freaked about the PSs.

    I have multicentric DCIS, mastectomy is the standard of care.  Some of the surgeons I've spoken with are willing to try lumpectomy, but none are sure it will work.  If it doesn't work and I need a mastectomy, the lumpectomy incisions will screw with my reconstruction results plus even if it does work I'll have a higher risk of recurrence.  The degree of risk varies depending on who I talk to.  I don't know who to believe.  That's for another thread.

    Oh, and I've now seen 5 breast surgeons - well, actually 4 but I had a phone consult with another.  They all have different opinions.  That's also for the other thread.

    Oh, and thr BS ranted about above said I was "overintellectualizing" this and needed to make a choice "from my heart."  Are you fing kidding me??????  My heart is telling me to entirely ignore that this is happening! 

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  • Janets1
    Janets1 Member Posts: 57
    edited November 2009
    Hi Sweatyspice:
    I would be furious with a surgeon who told me that I'm a few years too early - how totally insensitive is that? The "overintellectualizing" is also a sign of a condescending attitude and a  red flag that this guy is not for you. That is so patronizing. Surgeons in general aren't known for their bedside manner, but this guy sounds like a clod. Since you are in NYC, I would assume you are going to one of the big centers, like maybe Sloan Kettering? You might want to find a woman surgeon - you sound like someone who can use some real support and sensitivity - which you deserve! And if you find someone with whom you can relate and feel comfortable - your decision will be much easier to make, altho it is a tough one. All the best to you.
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  • CoolBreeze
    CoolBreeze Member Posts: 4,668
    edited November 2009

    I love technology and I'm an early adopter.  I got TiVo the first few months it was out, eleven years ago.  I was one of those who waited in line to get an iPhone, I got a kindle when they were first announced.  I could go on and on  - I love the latest and greatest.

    Loving the latest and greatest and not being rich means you live with the earliest iteration of whatever it is.  It wasn't long before a TiVo came out that could do media streaming - mine couldn't.  The iPhone 3G came out, but I was locked into my contract with the Edge phone.   Kindle came out with a better design a year later but my old one works fine so can't justify another few hundred bucks.

    My point is no matter what we do today, a better technology will come tomorrow. That doesn't mean we do nothing today.  I hope by the time I'm 70,  breast cancer will be treated with a pill, or 8 year olds will get a vaccine and never get it.  That doesn't mean I'll be bitter about having to do chemo/heceptin/rads.  Because, it's all we have at the time.

    I told you on the phone, SS, that you are too much in your head.   I also said you've done your due diligence and tons more research than most people have, and it's time to go with what feels right.   I hope that didn't insult you as it did when the doctor said it, if so, I'm sorry.

    But I think it's true and it's time, my friend. 

    I have a different take on this doctor.  No, he should not have kept you waiting that long.  But, he did it for patients, which means down the road you may need more time and get it.   And, he's really excited about the future of breast cancer treatment, which is why he shared it with you.  Maybe he didn't understand how that would come across to you - but he apologized when he did.  And, being excited about it means he is very involved and is probably a good doctor, and up on the latest techniques.

    Of course, I haven't heard the rest of the story yet.  I'll go see if I can find it.

     

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  • sweatyspice
    sweatyspice Member Posts: 922
    edited November 2009

    As it happens, I really like this surgeon.

    I agree, technology changes and you have to deal with technology as it exists at a particular point in time.  But as you mention CB, it also doesn't mean it's unreasonable to be bitter about it when he dangles stuff like that in my face.

    I wasn't upset when I thought I was waiting because he was with patients.  That was fine with me.  I was only upset when I heard he was at a meeting, because I have to assume his secretary KNEW he'd be at the meeting.  Somehow I doubt they decided to hold an 8:30am Wednesday meeting at 6:30pm on Tuesday.  If it was already in his schedule, I wish someone had called me to re-schedule my app't.  And I also wish they hadn't bullshitted me about what he was doing.  I guess he started out checking in on patients but then went to the meeting - which I think was about the clinical trial I'm just a tad too early to get in on.

    Anyway, I AGREE it's time to make a decision.  If there were something that "just felt right" I would have made the decision and been done with this nonsense by now.  Neither choice feels right for more than a few hours, and then I flip flop. That's the problem.

    Whether I'm "too in my head" isn't something that I can control, it's just how I deal with situations like this.  It IS a somewhat judgmental statement and not very helpful - precisely because it's not something I can control - but I didn't get pissed off when you said it, I just let it go.  It's not the first time I've heard that comment and it's probably not the last. 

    As far as time when I need it, I got a lot of time for this consult.  We had what seemed like a VERY long conversation.  In many ways, he's my favorite of the surgeons personality-wise, even though I don't like hearing his treatment recommendations and he did piss me off.  But, as you said, he apologized and we hugged goodbye. I have no long term grudge against him, I was simply annoyed and needed to rant.

    I have no doubt that he's a skilled and caring surgeon, on the front lines of research.  All the people I've consulted with are among the best surgeons in the city, if not the country, or the world.

    Further, this particular surgeon had a family member die of BC, so he may be more emotionally invested than others.  Whether that makes him too aggressive in treatment planning, I'm not sure.  But I am certain that he cares.  One of his research interests is Dr / patient communication, and I think he takes that seriously.  Which is not to say he didn't fuck it up with me on Friday morning.

    As far as women surgeons are concerned, I don't think that's the answer.  I've seen some of those and they're not necessarily any better in the warm and fuzzy department than the men are.  In fact the first surgeon I saw at Sloan was a woman, and I fired her and replaced her with a much nicer man.  (the surgeon I'm ranting about here is NOT at Sloan, he's at one of Sloan's biggest local competitors)

    Sloan is like a luxe spa though, you can't argue with the exam robes they give you!   But since I have no love for Sloan's plastics department, at least when it comes to tissue transfers, I can't go to Sloan for a mastectomy.

    The doctor I ranted about here - well, his final suggestion was that I speak to their breast cancer shrink.  I made an app't for next week.  (I've already seen him once, several weeks ago - this would be a follow up.)  I KNOW I have to make a decision, I just can't seem to do it and maybe some professional help would....help.

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  • CoolBreeze
    CoolBreeze Member Posts: 4,668
    edited November 2009

    I'm so sorry if you were offended - I didn't mean it as judgmental.  The last thing I would do is judge you as I know how hard this is.  I'm just afraid you'll end up with invasive disease so have been trying to nudge you a little.  It seems in your other thread though, you narrowed things down much better.  You've distilled your choices down and maybe that will help you.

    I think in many ways being "in your head" is a great thing - I'm probably not in mine enough.  :) 

    At some point though, this entire thing is a leap of faith.  For all of us.  We leap because we trust our doctors, or our God, or ourselves, or we just want to get it the f*ck over with so we go with the guy who has the cutest butt.

    You have to take the leap that seems to you to have the easiest landing.  I don't think anybody can make that decision for you.  You can't know until it's over what it will be like. 

    I told you it's not anywhere near as bad for me as I imagined it would be.  The worst was agonizing over what to do.  Maybe that will be the same for you?  Maybe not.  But, the one thing you will know is you did everything you could to research your options - far more than I ever did.  That's the good part about being in your head.

    But, at some point - it's time to jump.  It's cancer. Multi-focal, comedonecrosis.  

    I wish I could help you.  I wish I could make the decision for you - one I know would make you happy.  I wish I could manipulate time and make it ten years in the future when you could get the treatment this guy was talking  about - or we could get that Australian treatment that will regrow your own breast that I heard about just weeks after my mastectomy.  But, I can't and it is what it is.

    I'm SO SO SORRY you are struggling.  I do feel for you, very much so.  

    I had no idea they had breast cancer shrinks.  I think that is an extremely good idea - somebody who understands the biology and can walk you through a decision.  Let me know if you do that.  

    Take care girl!  

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  • sweatyspice
    sweatyspice Member Posts: 922
    edited November 2009

    I don't know if he understands the biology.  From what I've heard, 45% of breast cancer patients get major depression, so he understands the emotional side.  Also, I think he's gay.  Not sure if I think that's good or bad or irrelevant.

    A lot of the major cancer centers hook you up, or try to hook you up, with a shrink right at the beginning.  (I mean, they can't force you....but they sure did push!)

    I also don't know if he will help walk me through a decision, I'm hoping he will but I might be wrong about that. 

    My "regular" shrink is seemingly getting pissed off and frustrated with me, she just wants me to make a decision. NOW.  She seems to not understand how hard choosing is, she talks about her friends and patients who had BC and have moved on with their lives, etc.  Like they just had a path to follow....who knows.  I don't know these people so I don't know if they even had a choice.  Or, maybe they were people who just instinctively knew what they wanted and weren't busy trying to buck the system about it, as I apparently am.  And as you were, until they wouldn't let you anymore.

    And as I said, I wasn't particularly offended when you said whatever you said, I don't even remember it.  I was pissed when the surgeon said it, though.  From you it's an offhand remark from a friend who doesn't know WTF to say.  From him, probably because he's a professional I'm trying to rely on in a different way than I do a friend, it came across as condescending and definitely unhelpful.

    Screw it, I'm gonna eat some more cranberry sauce.

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