this is SO not what I was told...

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wpcvet
wpcvet Member Posts: 3
edited March 2014 in Breast Cancer #1
I have read some of the posts and may have some misspellings/ etc due to the fact that I am once again starting to cry (good thing back at the pysch tomorrow). I would NEVER have done this if they hadn't lied to me. I didn't HAVE to have the double mastectomy, I could have just had another lumpectomy and bought a "cutlet", as we call it at work, to make up the rest (this is my 3rd time). But, but surgeon (a breast "specialist") and plastics BOTH told me that simple mastectomy wasn't much worse than lumpectomies (which I didn't take anything for) and not really worse than the SNL I'd previously had (which I DID take an nsaid for). I was told drains for 7 to 10 days (no shower til then). I especially reiterated that, as a DVM, I needed to be able to use my arms well enough for surgeries and holding onto moving pets. I was told that 2 weeks would be fine. I barely got coverage for those 2 weeks (I'm solo). I went oon internet (breast cancer site) to look at pictures and decided that I didn't think the reconstructions were all that great and the flat lady didn't look too bad. But, she was thin and I am not. Found another site of a plastic surg and there were lots of pics of recoonstruction. Looked at fat ladies and was on the fence aoubt it. Pretty much decided to just do mastectomy and no resocontruction. But, surg wouln'dt sched surg til I'd seen plastics. So, went aahead and made appt. He confirmed what she said. I asked for all details, including discharge instructions and post of stuff now. He knew about the narcotic thing and siad, not to worry, Motrin high dose will do great, altho I said i never felt it was better than alleve. I really wanted EVERY detail and basically got none. OK, maybe that's the next appt. So, next appt (and, I should add, is 110 mi round trip, as my primary said these people are so great), I got about 5 min of "here's everything bad that can happen to you, now sign the consent". Basically, it was bleeding excessively, infection, incision falling apart, the obvious stuff. He started to leave, so I asked then if I could see the PA to get more details, but she never came in. The front office desk at least told me when the first reck would be (since I have to pull people out of work to do that 110 mi round trip and they need some planning).

Wellllllllllllllll. I do not think of myself as a wuss. I have had multiple fractures (walked on both my fractured feet), had a bad car accident that left me literally with a permanent dent in my boob (well, at least that's gone now), I've been kicked by a horse so badly i could barely walk for a week, then couldn't bend my knee because the muscle calcified (stunned the dr at the xray), had a needle loc withOUT local anesthetic (took a good 30 minutes, while he kept placing it and pulling and turning the hook--in my muscle), and had an endometrial biopsy (my **** was probably about a foot off the table with taht one, but the nurse told me I actually did better than a lot of people, including her---she kicked the dr in the face during it!), and have had MULTIPLE bites (and let me tell ya, ya haven't lived til you've had a good cat bite throbbing with every beat of your heart) over the years. When I woke up, I thought I was gonna die of pain. Had the motrin, but it only helped a little. Asked for ty/co, was told my chart said no narcotics. Isaid it should say ty/co ok and shouldv'e been written up to give. Didn't get it. Next day, it took a lot of begging and about 8 hours to get it. It definitely helped, but maybe went down to a 3-4 from 10. Not enough to be able to use my arms to get up or anything. Finally wnet home after 4 days. Used the ty/co and alleve at full dose as often as humanly possible. started taking alprazolam all the time too, figuring since I couldn't stand the pain, I'd just keep myself drugged into oblivion until I was better (psyc wasn't too happy about THAT).

At the 1 week checkup, the PA simply said it's too soon to feel better.

Psych said had to go off alpraz and upped my Zoloft. at 2 week ckup, I told the PA how much pain I was STILL in, etc, and altho I know it's too soon to use nerve drugs (like for phantom limb pain) for the "electric shocks" I get, there has to be something else I can do (I'm thinking heat pads, cold pads, SOMETHING). Nope, just wait. I said I was told 7 to 10 days and back to work in 2 weeks. She siad, oh no, maybe 3 to 4 weeks drains.

It's now 3.5 weeks out, still draining, still hurt like hell. Have another pschy appt tomorrow because I still feel like I can't go on like this much longer. And, I HAVE to go back to work April 19th, as we've exhausted all the available help. The only reason I'm alive now is that I was already on Zoloft before this. I still t hink about just ending it every day (have a psych appt tomorrow). I hate MDs. I must have something written on my forehead that only they can read that says "GET HER" because this seems to happen to be a lot. I had such bad care locally in 2001 that I didn't even go to a doctor for anything for 5 years. Otherwise, I wouldn't have consented to the 110 mi round trip to hosp/ surg/ plastics (which meant I had no visitors while in hospital and no one to speak up for me but me and they didn't listen to me). I never ever ever would have done this knowing this would be the way it was. I couldve had the lumpectomy and gone back to work the next day and none of this crap. But, no, I had to actually try to trust these idiots.

I now see reading these blogs that they just blatantly lied to me. My psych wants me to talk to them about it, but why? they didn't listen to me before, i've tried to tell them how I feel and nothing is done. I thought about seeing a different plastics person for second opinion, but after reading these posts, it sounds like the pain/ drain is actually normal at this point and may go on longer yet. I don't see how I could possible deal with it at work (my own cats still can't get on my chest, so are temporarily banned from my bedroom, so I can't even cuddle with them). "Informed consent" is such a joke. I wouldn't treat MY patients/ clients this way!!!!!

Comments

  • ms.sunshine
    ms.sunshine Member Posts: 707 Member
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    I'm so so sorry you had to
    I'm so so sorry you had to go thru that. Reading what you went thru makes my heart hurt for you. See another doctor, someone you feel comfortable with. Please please please don't end your life, that isn't the answer. Keep us updated on your progress.
  • m-star
    m-star Member Posts: 441
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    you have really been put
    you have really been put through the mill haven't you?! Im so sorry you're hurting like this. I am quite suprised you're still in so much pain after 3 1/2 weeks though. Have they checked you for infection??
    In the Uk, drains HAVE to be taken out 7 days post-op cus of causing infection inside the surgery site. Even on my 7th day,i was still draining about 25 ml but the body will absorb any excess and it was better the drains were out.

    Once those drains are out you will be amazed how much better you feel. seriously. both physically and psychologically.

    Hang in there.I know its tough as im only 7 weeks post-op myself.I would def question the amount of pain you are still in at this point though. It may be that you are doing too much and this is hindering your healing time.If you are doing too much with your arms and upper body,the drainage tubes may be moving around inside too much and preventing the tissue from healing, hence, stopping the raw tissue from mending.This may also be why you are still draining.


    If you're not happy with your surgeon/MD, change them You're health needs to came first.


    wishing you all the best

    xoxo
  • carkris
    carkris Member Posts: 4,553 Member
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    m-star said:

    you have really been put
    you have really been put through the mill haven't you?! Im so sorry you're hurting like this. I am quite suprised you're still in so much pain after 3 1/2 weeks though. Have they checked you for infection??
    In the Uk, drains HAVE to be taken out 7 days post-op cus of causing infection inside the surgery site. Even on my 7th day,i was still draining about 25 ml but the body will absorb any excess and it was better the drains were out.

    Once those drains are out you will be amazed how much better you feel. seriously. both physically and psychologically.

    Hang in there.I know its tough as im only 7 weeks post-op myself.I would def question the amount of pain you are still in at this point though. It may be that you are doing too much and this is hindering your healing time.If you are doing too much with your arms and upper body,the drainage tubes may be moving around inside too much and preventing the tissue from healing, hence, stopping the raw tissue from mending.This may also be why you are still draining.


    If you're not happy with your surgeon/MD, change them You're health needs to came first.


    wishing you all the best

    xoxo

    limit your motion. my doc
    limit your motion. my doc was very specific about lifting my arm . seroma develops in empty spaces, so you want it to tack down and too much movement keeps "opening" it up. I drained for 3 weeks and was on antibiotics. then reacumulated and was aspirated then had an ace around my chest. I am sorry you are having such a bad time. it will get better.
  • wpcvet
    wpcvet Member Posts: 3
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    carkris said:

    limit your motion. my doc
    limit your motion. my doc was very specific about lifting my arm . seroma develops in empty spaces, so you want it to tack down and too much movement keeps "opening" it up. I drained for 3 weeks and was on antibiotics. then reacumulated and was aspirated then had an ace around my chest. I am sorry you are having such a bad time. it will get better.

    this is SO not what I was told
    Sorry haven't been on. Had 2 really really bad days. More depression meds, yea!!! Have days of sun, too (as I've always said, when the sun comes up, so do I). I was originally draining about 1 litre a day!!!!! At 4 weeks, down to about 40 ml left and 80 ml right. I was told they won't pull them til under 30 ml per day. I'm a veterinarian---no, there is no infection. I'm just very tired of feeling like someone implanted a rubber band around my chest--even taking a big breath or coughing or sneezing stretches it. The "electric shocks" have lessened in frequency, but just constant burning raw nerve pain. I can barely stand to have even my t-shirt against my skin. It isn't just the incision, it's above and up to my neck too. My pits feel like someone has jammed some rocks up into them. He left some flab sticking out on my sides (don't quite get why this was necessary, but he did say he wasn't going to fix that on first surgery) and my arms either rub against them or are up against them when by my side (actually bothers my arms as well).

    While I am bored silly, I also fear going back to work. First of all, I was told not to shower as long as drains in. I don't care what anyone says, a sponge bath just doesn't cut it and I feel totally gross most of the time. I'm going to have to figure out a way to cover up the drain lines and bulbs really well so no cats or dogs catch them with their feet or bite them. And, no one can jump on my chest (or be held up against me). Not to mention, I just plain don't like being out and about with 2 big bulb bulges showing (plus my "outie"-----I tied a strip of old t-shirt around my waist to pin the bulbs to and the knot is really quite visible)(I wouldn't recommend pinning the drains to your pants---I have enough trouble as it is pulling my pants down without catching the drain line and pulling on it, let alone trying to remember to un pin them first!)

    I feel like I look like a freak, with huge incisions, funky lumpy bumpy tissue at boob sites and along sides, and very concave under my clavicles. Why would a Dr or PA come in, open your bandage and pronounce "Oh, it looks beautiful, just great." Are you kidding me? How tactless can you be. They were all made aware of my depression history, yet they are all quite oblivious to how I am doing, no matter what I say. I'm just really upset because, once again, I THOUGHT these people were trustworthy, but, once again, no. (there is more to the story on that) And, they actually think you are stupid enough to keep coming to see them????!!!!! If *I* told all my clients that their dogs would be able to go home in 1 day and be up and around normally by 2 days from a surgery, but it turns out that the vast majority actually take weeks or months to be normal, I'd have no clients left and I'd probably get sued.
  • AMomNETN
    AMomNETN Member Posts: 242
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    wpcvet said:

    this is SO not what I was told
    Sorry haven't been on. Had 2 really really bad days. More depression meds, yea!!! Have days of sun, too (as I've always said, when the sun comes up, so do I). I was originally draining about 1 litre a day!!!!! At 4 weeks, down to about 40 ml left and 80 ml right. I was told they won't pull them til under 30 ml per day. I'm a veterinarian---no, there is no infection. I'm just very tired of feeling like someone implanted a rubber band around my chest--even taking a big breath or coughing or sneezing stretches it. The "electric shocks" have lessened in frequency, but just constant burning raw nerve pain. I can barely stand to have even my t-shirt against my skin. It isn't just the incision, it's above and up to my neck too. My pits feel like someone has jammed some rocks up into them. He left some flab sticking out on my sides (don't quite get why this was necessary, but he did say he wasn't going to fix that on first surgery) and my arms either rub against them or are up against them when by my side (actually bothers my arms as well).

    While I am bored silly, I also fear going back to work. First of all, I was told not to shower as long as drains in. I don't care what anyone says, a sponge bath just doesn't cut it and I feel totally gross most of the time. I'm going to have to figure out a way to cover up the drain lines and bulbs really well so no cats or dogs catch them with their feet or bite them. And, no one can jump on my chest (or be held up against me). Not to mention, I just plain don't like being out and about with 2 big bulb bulges showing (plus my "outie"-----I tied a strip of old t-shirt around my waist to pin the bulbs to and the knot is really quite visible)(I wouldn't recommend pinning the drains to your pants---I have enough trouble as it is pulling my pants down without catching the drain line and pulling on it, let alone trying to remember to un pin them first!)

    I feel like I look like a freak, with huge incisions, funky lumpy bumpy tissue at boob sites and along sides, and very concave under my clavicles. Why would a Dr or PA come in, open your bandage and pronounce "Oh, it looks beautiful, just great." Are you kidding me? How tactless can you be. They were all made aware of my depression history, yet they are all quite oblivious to how I am doing, no matter what I say. I'm just really upset because, once again, I THOUGHT these people were trustworthy, but, once again, no. (there is more to the story on that) And, they actually think you are stupid enough to keep coming to see them????!!!!! If *I* told all my clients that their dogs would be able to go home in 1 day and be up and around normally by 2 days from a surgery, but it turns out that the vast majority actually take weeks or months to be normal, I'd have no clients left and I'd probably get sued.

    I'm so sorry you are going
    I'm so sorry you are going through all this. I'm about 4 weeks out from surgery. I had my drains out within 10 days. 1 in a week and the other later. Just hang in there. I was told I'd have a new "normal" from now on and they were very right. Once you get the diagnois nothing is ever "normal" again. I'm slowing learning that I'm 1st. I hope you can find a support group in your area. I have and they have been a wonderful asset for me through all this. I don't think your surgeon was necessarily tactless maybe it was his way of saying things were as they should be at that point. Keep venting we're here.
  • survivorbc09
    survivorbc09 Member Posts: 4,374 Member
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    I'm so so sorry you had to
    I'm so so sorry you had to go thru that. Reading what you went thru makes my heart hurt for you. See another doctor, someone you feel comfortable with. Please please please don't end your life, that isn't the answer. Keep us updated on your progress.

    I also am very sorry for all
    I also am very sorry for all that you have been put thru. Please keep us informed on how you are doing. Someone is always here, 24/7, if you need help. Take care!

    HUGS
  • JillyB
    JillyB Member Posts: 50
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    this is SO not what I was told...
    Vet,
    You are right,
    if you told your animal patients what you were told and then ended up with this outcome, you would have no practice left. Have you talked to a lawyer? It really sounds as if you have gotten screwed adnd your Dr's are the type that treat patients as Chart Numbers, not individual people. I personally, not just being a BC patient, but also a Chronic Pain Patient, have a HUGE problem with Doctors who treat people like that. Correct me if I am wrong in assuming this is how you are being treated. I get this feeling from the way you say you feel you have no voice. I know that feeling, and it took a long time to find the right people to work with. I don't know what advice to give you, I just wanted to say I think I may know how you feel like you are being treated and it can really taint your view on the medical profession in general. And the anger it brings out in you can be so draining. And yes, the anger is not productive, and I am sure you know that, but when you get this treatment, it is so frustrating that there is almost no way to control the anger. I have said things to Pain Specialists I thought I would never hear come out of my mouth, but it becomes so insulting that it's like the wire from your brain to your mouth in these situations has been temporarily disconnected! I am completely empathetic to the situation you are going through and hope you find a way out soon.
    xo,
    Jilly
    And like someone said, vent all you want, we are here to listen and try to help, or at least identify with you so you don't feel so alone!