Got a tentative surgery date and I'm pissed

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Jadedjo
Jadedjo Member Posts: 469
edited September 2018 in Surgery - Before, During, and After

I got a tentative date which I'm not stating on here due to it being a public forum other then it's well over a month away, she is just waiting for a couple of doctors to confirm. Y'all will know if I survive it  when I post a it's done post at some point in October.

One of the things at the first appt I did was give the date my menstrual cycle is supposed to start and asked for a date days before or close to five days after so I wouldn't be on it for surgery because bleeding from my boobs is bad enough and my cycle is rough on my body enough.

When is the date? 

Right smack dab in the middle of my cycle!

which means my overnight bag is going to be half full of supplies for it.not much room for anything else.

i can't believe I'm saying this but I'm hoping one of the doctors says nope can't do it and I can't ask her to change it because it's already later then they said it would be.considering one is supposed to get a surgery date within 4-6 weeks of last surgeon appt and it is going to be way past that amount of time.

my guess is they shoved my paperwork somewhere and forgot about me until I called wensday. Especially since it's been two weeks and the doctors haven't confirmed yet. That should have been done already.

Like it's not enough I'm getting my boobs chopped off I have to deal with the hell that my cycle is in top of it.Specifically pms morning sickness and pms severe fatigue so imagine me climbing the steep steps to my place with that on top of surgery aftermath.

I seem to have horrible luck these days especially when it comes to this doctor and his office. 

I'm also royally pissed. I feel like the level of care I am getting is blasé, severely lacking and not being treated all that seriously considering it's cancer.

The most I can hope for is the stress makes me over a week late again and surgery will be done when it starts or it starts early enough that I will almost be done when it happens but that would require me to be lucky and that's one thing I'm not.

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  • edwards750
    edwards750 Member Posts: 3,761
    edited September 2018

    You shouldn’t have to rely on luck and what’s with the insensitivity of your medical team? They seem to forget the emotional roller coaster we are on with this DX and in your case indifferent to the physical issues. It sounds like your doctors are on overload which isn’t an excuse but a problem unfortunately for you.

    I’m sorry because you need to be as stress free as possible dealing with this insidious disease. Is there anyone you can talk to in your doctor’s office? If possible I would go in to talk to someone. There is no reason to add this to your concerns during this trying time.

    In my case I had one of the 2 best BS’ in town but also one who needed to work on his bedside manner. His staff was awesome however.

    Good luck. Keep us posted.

    Diane

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  • Giveityourall
    Giveityourall Member Posts: 71
    edited September 2018

    Jadedjo,

    I am sorry this occurred to you. I did not receive my preferred surgery date either and felt very frustrated. In fact, I have been frustrated with the entire process. I am ANGRY. I don’t know if my anger is because I hate cancer and I, for the first time, am not in control of my health - or maybe I am angry because I am grieving. I have lost my old self- the self that was not diagnosed with cancer. The old self that did not wake up every morning with anxiety; “what if” questions; and thoughts centered around mortality issues. This has been tough,

    As for my delayed surgery, my last chemo treatment was June 19th and my surgery date was July 23rd. During my first visit with the breast surgeon, she stated that my surgery should occur two to three weeks after my last chemo treatment. My surgery ended up being four weeks and a few days after my last chemo treatment. I was pissed because my date did not coincide with the expected plan. Also, my tumor was off the charts aggressive. I wanted that damn thing out of me. I hated it.

    Looking back on the scheduled surgical date, I also have to remember that I am in Tampa. There are not loads and loads of breast surgeons and hospitals. Tampa has 300,000 people and is not big enough to warrant a New York City health system. So, I had to wait. It fueled my anger. Most things did not go my way and I always felt like I was pulling the “short stick.” I understand your anger.

    Do you live in a small town? Are there other hospitals close by? Do you have to use this particular breast surgeon? These questions are just something to ponder. Once again, I feel your frustration. We are fighting for our lives and don’t always feel that we have the extra strength to fight for an earlier date. Somehow... we get what we need to get done - even if it is a small modification.

    My best. Giveityoural


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  • Jadedjo
    Jadedjo Member Posts: 469
    edited September 2018

    Edwards750

    Thanks.

    It was going ok until the plastic surgeon, then it slowed down to a snails pace with me having to call and say "hello what's going on?!" I will be calling back on Monday saying "I'm going to have my cycle then, are you SURE  you want to choose that day?" they don't want you to wear underwear in surgery but I'm going to have to wear something and I'm not able to use tampons. So it's going to be complicated for everybody involved.

    giveityourall

    Thanks 

    No I am unable to chose my own doctor,Canadian health system. You get who you get especially if they are busy specialists which these guys are. It's this office that's the issue. First there was no contact For an appt date I had to initiate it after 2 weeks,then this time after two weeks again of waiting for a surgery date I called. Didn't get a callback or anything I called again and got ahold of her and that's when I was told the tentative date which was way later then it should be if she had started choosing the date after I saw him. Which is why I think it only happened after I called the first time. It doesn't take over two weeks for a doctor to look at their schedule and say ya I got an opening or no I don't got an opening. They don't stop and think I'm dealing with this on my own. There is nobody to help me get up to go to the bathroom and doing what needs doing when one has their cycle. Also the supplies I will need are going to take up room in my small bag that could have been used for something else. I mean I gave her the dates so I could avoid this and she went and made it right in the middle so nobody there seems to be listening to me.

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  • WC3
    WC3 Member Posts: 1,540
    edited September 2018

    Jadedjo:

    Sorry to hear the doctors' office is not up on their game. Is there an office manager or a director you can speak to about the quality of care? If they are not scheduling according to guidelines, those who oversee the office should be made aware of it.

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  • AliceBastable
    AliceBastable Member Posts: 3,461
    edited September 2018

    I'm sorry you aren't getting the surgical date you want. Unfortunately, it's not just your surgeon making the decision. It has to be coordinated between the surgeon, the operating room schedule, the anesthesiology team, and other behind-the-scenes personnel. I've usually gotten calls from a hospital scheduler for surgery dates.


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  • Yaniza
    Yaniza Member Posts: 140
    edited September 2018

    Hi Jadedjo,

    Canadian here... diagnosed 2 years ago and back here again reading because of my recent "elective" revision to prepectoral reconstruction, (covered under our health care system).

    I asked around and decided who I wanted as a surgical oncologist and that is who my family doctor referred me to. As far as my plastic surgeon, I was happy to go with the team that was put together after my first choice for surgical oncologist.

    I know in every situation there is luck/chance involved. It seems like you need emotional support and it also seems like you need an advocate to generally help you negotiate this journey. If you can't count on family or friends there are groups of women dealing with breast cancer everywhere. Besides the support you can get on line perhaps reaching out by phone and then perhaps in person will help.

    I remember disagreeing with aspects of my care ... but there are protocols to be followed. And I remember being incredibly angry by times. Looking back I know that the anger was fueled by terror.

    Were your biopsies done quickly? Mine were done very quickly but waiting for the pathology report was a complete agony.

    I hope today is a better one for you.


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  • BellasMomToo
    BellasMomToo Member Posts: 305
    edited September 2018

    Jadedjo: I don't blame you for being pissed. Some doctors are harder to schedule than others. I had a lot of difficulty (and stress!) getting my UMX surgery scheduled. I had chemo first and called my BS's office after chemo # 5 (of 6) to schedule my UMX. Since I was told that surgery should occur 4 to 6 weeks after finishing chemo, that would have given them plenty of time to schedule my surgery. But they wouldn't return my call. I would call again and they wouldn't return my call. Weeks went by. Finally I complained to my Nurse Navigator and she contacted them and I finally got a call. My surgery date was 6 weeks after my last chemo. I was told to take it or leave it cause that's all they had available. I took it. I didn't have a choice cause I didn't have time to find another BS.

    This office also screwed up my port placement surgery. They cancelled my appointment and didn't tell me. I found out when I went to the hospital! That is the same scheduler so I think she was pissed at me cause she got in trouble for not informing me of my cancelled port surgery.

    So even those of us with "insurance" get the run around!

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited September 2018

    Hi,

    I know that having surgery when you have your period is not ideal, but is it medically contraindicated? If not, I believe hospitals and staff have experience in dealing with menstruating women. Wishing you the best

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  • gb2115
    gb2115 Member Posts: 1,894
    edited September 2018

    For what it's worth I had my lumpectomy during my period (which came a week early apparently due to stress), and it was really a non-issue. The medical team is equipped to handle it. You can't wear a tampon of course. They had me in hospital panties and a pad. Woke up with it either still on, or put back on. Not sure about the in-between.

    This doesn't help your other concerns of course, but don't worry about bleeding during surgery.

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  • Jadedjo
    Jadedjo Member Posts: 469
    edited September 2018

    WC3

    Thanks.the system here don't seem to care and at this point I'm done. 

    Alicebastable

    The problem is nobody is contacting me and letting me know there is a delay. I'm getting mixed messages from all sides.and I'm sitting here wondering how much farther the cancer has spread during that whole time.if one person had taken 2 minutes to call and say "we are just waiting on confirmation". I wouldn't be as pissed as I am but I was left dangling out in the wind with nothing.

    Yaniza

    Thanks. I thought I had advocates but it looks like as always I'm gonna have to deal with this crap by myself.tje biopsy was done quickly but when it came to the plastic surgeon it's like everybody disappeared and I'm left floundering all on my own. I felt I had supports until that point and now I just feel abandoned and forgotten.

    Bellasmomtoo

    I'm sorry you had to deal with that. I think so storms they forget it's an daily job for them but for those of us whose lives are in their hands it's a life altering ..well the best word would be tragedy..

    Exbrnxgirl

    I have severe anemia to the point I needed a blood transfusion two years ago.it drops steadily until I have to go for multiple iron infusions so doing a surgery  that leaves me bleeding heavily and having my cycle which also has me bleeding isn't going to do me no favours.maybe not medically contraindicated but still putting me at risk.i also get sick as hell during my cycle so add that on top of recovery.im recovering on my own so anything that leaves me feeling weaker then I should be after surgery is also putting me at risk.

    Gb2115

    I'm hoping stress delays mine by a week or makes it come early so that I'm done or mostly done by the date. I've learn to rely on nothing when it comes to the health system in this city and left a message explaining about my cycle and asking if there will be issues. Right now other then it aggravating and possibly making worse my anemia issue I'm mainly ticked off that space in  my carry all bag which is not that big is going to be taken up by the supplies I have to bring because of my cycle.

    I just want on thing in my life to go right and instead I get one bad thing after another. It's been over four almost 5 years (which is why I round up and say 5) of suffering and now I'm facing an even deeper suffering with what's coming with surgery and possibly afterwards. When is it supposed to get better?!? People keep telling me life gets better but it's only been getting worse for me. So when?


    Thank you to all who replied.

    Blessed be.


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  • Jadedjo
    Jadedjo Member Posts: 469
    edited September 2018

    Still getting the runaround,they changed my surgery date to a week earlier but still not confirmed so I can't get my transportation approved and covered, my prescription bras still have not been approved so I can't pick them up and wash them and I'm pretty much done with the whole lot of them and have asked the breast cancer nurse who was helping me with appts to be my advocate because nobody is returning my phone calls or they are just shifting me off to somebody else and I'm still not getting any answers. I've tried to sign up for groups only to be told not to bother until I'm done ALL treatments, and at one point I snapped what about those of us starting out or in the middle don't we deserve supports and help too?but from what I'm getting with the don't bother the answer is no,your on your own until it's all over.

    I don't need support when it's over I need it NOW when I'm in the thick of it and don't know what's coming. When it's over, it's over. I'm not freaking out with what's coming because it already happened. 


    I hate this city and it's so called health care system.


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