Come join others currently navigating treatment in our weekly Zoom Meetup! Register here: Tuesdays, 1pm ET.
Fill Out Your Profile to share more about you. Learn more...

September surgery scheduled and need to chat?

13»

Comments

  • mavericksmom
    mavericksmom Member Posts: 1,076
    edited September 2022

    I will call my insurance company Monday morning, not that it will do any good! I feel as if I am screwed no matter what. Why call it an outpatient procedure if you stay overnight? Especially since there are apparently rules to follow in order for insurance to pay for the procedure. No wonder the medical system is in such bad shape! I realize sometimes a person has a procedure and something goes horribly wrong, but it sounds like outpatients being kept overnight is far too common to be an occasional exception!

    I looked it up to see if I could sign myself out if they tried to keep me overnight and it said yes, I can, but if I do, then the hospital/doctors aren't responsible, and my insurance may not cover any of the procedure. I can't win for losing!

    I feel as if my life is being hijacked! How can anyone plan for a surgery when the simple basics, like "will I go home the same day, or stay overnight," can't be answered? The third time is no better than the other two times I had breast cancer. There is no one I can trust to give me a straight answer. Once I get home after my surgery, I will be fine. I just need to get home!

    I feel like doing what apparently everyone else does and just let the chips fall where they may. The only problem with that is that while everyone else isn't getting high medical bills, I would be the one who would!

    I don't "fly by the seat of my pants," like others do. I am a planner, I plan things. I prepare for events. I don't do well with things I can't plan for accurately. I will survive cancer again, but I may lose my mind in the process!

    I don't know what I hate more, cancer or the healthcare system! Pretty sure it's the healthcare system.

  • maggie15
    maggie15 Member Posts: 817
    edited September 2022

    mavericksmom - When a hospital keeps you overnight for “observation" you are considered an outpatient as far as Medicare is concerned. They don't “plan" to keep you overnight but then decide you are not medically ready to be sent home. They know that in all likelihood you will need to stay until the next day but the surgery is not an inpatient procedure. As long as the hospital codes it correctly you will still be an outpatient. It doesn't make sense but it is done all the time.

  • mavericksmom
    mavericksmom Member Posts: 1,076
    edited September 2022

    Thanks Maggie, I understand what you are saying, but how I am supposed to plan for transportation home from the hospital when everything seems so up in the air?

    Any time I contact a rep from my insurance company, I end up being more confused than I was before the call! These might be "games" the insurance companies and medical community play, but for patients it adds so much stress to an already stressful situation!

    I already messaged my BS and told him I won't stay overnight. Now I don't know what to do now. When my PS said it was an outpatient surgery, I was happy because I didn't want to stay overnight. Then I contacted my insurance company and got an ear full of confusion!

    This was definitely not an issue with my other breast cancer surgeries. With the first one, I had amazing insurance, and I was 20 years younger, so even if I got hit with higher-than-expected medical bills, I had a long time before retirement. In 2019 I had the same Medicare Advantage I have now, but I was told I would be in the hospital 5 days at my surgical appointment, because of the DIEP reconstruction and long surgery.

    I guess I will call my breast surgeon's office on Monday to get some clarification. I am not contacting my insurance again. I will just have to deal with whatever bills I get and if I am never able to retire, so be it.

  • mavericksmom
    mavericksmom Member Posts: 1,076
    edited September 2022

    Why is it that problems at night seem so much worse?

    I will make some calls tomorrow, but I just decided to make two plans, one if I get released the same day and the other if I have to stay, I plan to bring my phone and a charger with me just in case they keep me overnight. I still prefer to go home same day, but as soon as they put a bracelet on a patient at a hospital, the patient is no longer in charge, so no use stressing over it.

    Thank you for all who shared information to help me understand the insurance mess!

  • serendipity09
    serendipity09 Member Posts: 769
    edited September 2022

    Mavericksmom - I can only imagine how stressful this must be. The important thing is that you have your surgery to get rid of this beast and let the chips fall. Unfortunately, there's no way for sure to know if you'll have to stay at the hospital, hopefully everything goes well and they send you home. You've emphasized the importance of this to the surgeon and more than likely you will go home. If they need to keep you overnight for observation it's because something may have warranted it and at least you'll be in good hands. If I'm not mistaken, fivetimes, who started this thread, had a BMX and went home the same day. Try not to stress about it anymore (I know easier said than done.) You really don't need to go into surgery and the stress cause you high blood pressure or something that will require for you to stay overnight.

    And yes, please do not call the insurance company, that will do you no good.

    Do you live far from the hospital? Is there a neighbor that maybe can go with your husband to pick you up if it's later in the day? I'm sure you've thought about all these things already.

    Please try and to remain calm. <3

  • mavericksmom
    mavericksmom Member Posts: 1,076
    edited September 2022

    Thanks! I am definitely NOT calling my insurance company again. Every time I call my insurance company, I get someone different. They never really seem to know anything and give so much conflicting information!

    As you said, let the chips fall where they may. I will figure something out no matter what happens.

    I am making back up plans to get home. My husband and I talked about it this morning. We have plans in place for either scenario so all is good.

    I need to focus on the end result, NO MORE CANCER!!!!

    Thank you all for your much needed support!!!!

  • harley07
    harley07 Member Posts: 259
    edited September 2022

    @mavericksmom - I’m so sorry that you have the added stress in addition to the worry over BC. I will be thinking of you and hoping all goes smoothly. Keep us updated if you can.

  • mavericksmom
    mavericksmom Member Posts: 1,076
    edited September 2022

    Thanks harley, I will!

  • maggiehopley
    maggiehopley Member Posts: 100
    edited September 2022

    I am 9 days post BMX. My surgery began at 10:30 am and I was discharged at 3 pm. I was very surprised that no one ever called me to check up on how I was doing. I've had minor procedures before where they called to make sure I was okay, but major surgery...crickets. I had my one week post-op visit on Friday and saw the PA as the surgeon was out of town; she removed 2 of my 4 drains. I will have the other 2 removed this week and this time I will see my BS.

  • mavericksmom
    mavericksmom Member Posts: 1,076
    edited September 2022

    maggie, it is so strange to me that no one calls to check on patients after they are discharged from the hospital. I had that happen before when I had minor surgery, my second lumpectomy when they also put in my port for chemo at the same time.

    As a former veterinary technician, that shocked me because every animal we sent home after surgery, no matter if it was the same day or in our pet hospital for days, received a call from us the next day and often again a few days later.

    I am still confused as to whether I will go home or stay overnight. Did you know prior to your surgery that you would go home the same day? I assume you had nodes removed on both sides resulting in two of the drains. I already know I will see the PA for my one-week post op visit too. I guess what confuses me is that the PS said it would be an outpatient procedure, which is the same as ambulatory. The hospital has a section for same day procedures, but I was told to check in at another location in the hospital.

    Did you have any type of reconstruction? Expanders? If not, did you only have one surgeon, your BS? I have both PS and BS for mine due to having expanders. I don't see that as a reason for an overnight stay, but it just makes it more complicated dealing with two surgeons instead of one.

  • maggiehopley
    maggiehopley Member Posts: 100
    edited September 2022

    mavericksmom- I used to work as a vet tech, too (a long time ago). I knew all along that I would go home the same day; staying was never presented as an option or possibility. However, I did not have any type of reconstruction; I am staying flat. I only had nodes taken on my left side, so I don't know why I also have two drains on my right. I now need a biopsy on my thyroid- ugh!

  • mavericksmom
    mavericksmom Member Posts: 1,076
    edited September 2022

    Oh Maggie! Double whammy! I am so sorry to hear that! I really hope you get good news when you have your thyroid biopsy and results! You are certainly over-due for GOOD NEWS!

    When you said you knew all along you would go home the same day, did they tell you that? All I was told was I would be and outpatient which I assumed was same day. When my insurance rep said I could be kept overnight even as an outpatient and said I might get added charges if they do, I panicked! Several people here said they were kept overnight but were also listed as an outpatient. So, I will find out the day of the surgery and regardless, it's all good. I made two plans to be picked up and taken home, one for each scenario.

    This morning I spoke to my PS insurance person, and while she never said I would go home the same day, she explained some of my confusion over my insurance which was extremely reassuring. Someone here said I should NOT speak to my insurance company, and they were 100% right! I wish I never spoke with them! My doctor's insurance person was much more helpful!

    Of course, I went to run errands this morning and the driver side window in my car had issues going back up after I put it down to go through bank drive through. I thought of just waiting to deal with it until after my surgery, but then thought of all the times either myself or my husband will need it to work correctly so I scheduled an appointment with the dealership tomorrow, I actually need an oil change too and since I am off from work, it is a good time to take care of that, especially with winter coming. I bought my car at a dealership about an hour from my home before the pandemic. I have never taken it anywhere else. I just paid it off, and I planned to look for a mechanic closer to home, but never did that, so I feel better going back to the dealership to get the service done. I have had such wonderful experiences there, unlike other dealerships I have used over my lifetime.

    Always something, right? It is supposed to be nice tomorrow, so I will enjoy the drive, most of which is through small towns and countryside.


  • mavericksmom
    mavericksmom Member Posts: 1,076
    edited September 2022

    serendipity, my surgery date is Oct 12th. I decided just to come back here rather than push the October surgery topic.

    Starting to feel mentally fragile. Reality is closing in. Work is becoming too much for me and that also makes me sad. I am just not young enough to deal with all the emotional baggage some of the students bring. Not their fault but standing most of the day and trying to cover the needs of multiple classrooms at one time is taking a toll on me.

    I feel totally unprepared for retirement. Ugh.

    I wish I the only negative thing in my life was the breast cancer, but sadly it isn't. Hard to focus on that. When I do, it just adds more stress as I worry about my husband. I also hate that I am finally feeling good about my physical health while understanding that when I have the surgery, I am going to be in a lot of pain and have limitations for weeks afterwards. Like most breast cancer patients, I wish I could just look the other way and go back to my pre-diagnosis time! Having this for a third time definitely doesn't make it easier, if anything, it makes it a lot harder!

    Also, I feel a disconnect with the whole breast issue. I hate having a medical issue that involves multiple doctors. I have no idea which one is "in charge." At first I was happy to hear the hospital has a nurse navigator, however I have been given multiple nurse navigator cards which just confuses me. I don't even know what they are supposed to do. I never met those I have cards for, every area seems to have a different "navigator." I met with one when I had my biopsy in the breast center, but there are others who I guess work with the doctors. I just don't like talking to people I never met. So far, the contact I have had with the one my breast surgeon told me about is more of a scheduler than anything else. I see no difference between what she does and what the receptionist at my doctor's office does.


  • serendipity09
    serendipity09 Member Posts: 769
    edited September 2022

    Mavericksmom - it's all just so overwhelming. Is there any way you can take off next week or mid week to prepare for surgery? Get some "me" time in there? You need to take care of you; getting yourself right mentally is the priority. I'm usually all worked up leading up to surgery. Then the morning of, I arrive at the hospital all calm. I go to sleep, the next thing I know I'm awake and the worst part is over, the healing has begun.

    The after surgery, hopefully will not be bad for you. I was very surprised at how two days after my BMX I was ready to up and go, with the exception of some soreness in my breast and the drains that were in the way. You're going to do great!! Stay positive!!

    There was only one nurse navigator I worked with when I was dx'd. She was very helpful at the beginning when everything was just happening so fast. She proved to be a disappointment when, during one of my chemo sessions, I think it was week 8 out of 12. She asked me if I had decided what surgery I was going to do. When I told her that I was going with a BMX, her kind smile turned in a frown (think the grinch) and she scolded me and told me that the hospital doesn't think that it's a good idea to get rid of a healthy breast. She tried to guilt me out of doing the BMX. I was so angry, sad and hurt. I was dumbfounded. I lost it on her. I made it very clear that she was not going to influence my decision that I had four months to think about and that she could leave my side. My nurse was taken aback, she was infuriated! I was visibly upset which caused my BP/ to rise. After that I never saw her again. I now my nurse complained about her. A month later she was no longer there. Whether or not that had anything to do with me, I don't know, but I'm sure I wasn't the only one she spoke to in the manner she did. My surgery still had not been scheduled and I was going with my gut feeling regarding what I thought was best for me and giving me a bit of peace of mind. All that went out the window.

    I'm very private and don't like to talk to others either, but with this whole situation I've come to the realization that even the counselor needs counseling.

    There are so any people involved in the whole process and it can become too much, but just know that they are all there to make sure that things go smoothly for you.

  • maggiehopley
    maggiehopley Member Posts: 100
    edited September 2022

    When I first met my BS, he said that I would have to have a mastectomy (2 tumors on opposite sides of an A cup breast). I held up 2 fingers and he smiled. Then I said "and I'm staying flat". He responded "my other patients that have made that choice have been very happy with it." No one disapproved of my removing a healthy breast or tried to talk me into reconstruction. I then found out I was Her2+ and had to have neoadjuvant chemo, and before my surgery my MO confirmed that I was having a bilateral, but made no comment on whether or not she approved. Incidentally, my pre-chemo MRI showed something on my "good" breast that required a biopsy- benign PASH, which made me sure I wanted both gone, but my post-surgery pathology made no mention of it.

    Not only did no one try to influence my choices, they didn't even ask me about it or want to discuss it. I just told them what I wanted and they said okay.

  • lillyishere
    lillyishere Member Posts: 769
    edited September 2022

    Mavericksmom, I'm sorry I haven't read all your posts. May I ask why are you having this surgery? Did you have a recurrence? If you are having BMX, consider like a childbirth, it is difficult for a few days but then you'll forget about it :). Breast reconstruction is a bit more difficult but Hollywood stars do it all the time :)

  • mavericksmom
    mavericksmom Member Posts: 1,076
    edited September 2022

    lillyishere, I am having a single mastectomy because this is the third time I have had breast cancer. The first two are in my bio. I wanted a bilateral mastectomy in 2019 and was refused because the cancer hospital I went to apparently had a policy of not removing a healthy breast. I know they do remove healthy breasts for BRCA positive patients because they brag about that in their magazine, that they mail 4 times a year! I am BRCA neg, just as I am for at least 52 other genes, yet my mother, two of 3 sisters and at least one cousin had breast cancer. I wrote a letter to that hospital in hopes that they might reconsider their position and spare someone else my fate. As for me, I had to wait for my healthy breast to get cancer too....all of 3 1/2 years! Just when I started to believe those doctors, I got the diagnosis. I am so glad I switched to a local hospital, there is NO WAY I would let anyone from the cancer hospital touch me again! Their breast cancer commercials nauseate me!

    I came home from work today realizing that I am ready to retire. The exact date to be determined, but I don't think I will work the entire school year. I am waiting to see what my surgical biopsy results reveal. I plan to work up to and including the day prior to my surgery. Then I will be on disability until after Thanksgiving. Like breast cancer, the idea of retirement takes some getting used to.

    serendipity, your experience with the Nurse navigator is similar to my past experience with one. My radiation nurse in 2003 actually turned on me because I was becoming depressed due to the jellybean blisters and sloughing off of skin from the radiation! When I began radiation she was very sympathetic, told me I could ask her anything, etc etc. Thankfully the radiation technician I had was just the opposite, very compassionate!

    I feel better than I did this morning, but I get episodes of pure fear. I hate when I get them at night, because they always seem worse. I actually do better with less interaction with anyone medical related. I will suck up the surgery, I know I have no choice, and my doctors are great! I will tell myself that once I am home, I will be fine!

    One of my fears is that they will hurt my shoulder while I am under anesthesia. Both of my shoulders have "total reverse replacements" in them. My right one was done in 2010. The left one in 2016. For some unknown reason, not an accident, all my rotator cuff muscles & tendons had complete tears. My issue wasn't pain, which is the norm, but function. I couldn't reach out my arm even to turn a doorknob! I want to be sure anyone who touches me is aware of that. My doctors know, but I can't count on that.

    It is all part of the emotional roller coaster of breast cancer!

    Thank you to everyone who offered support! I couldn't get through this without all of you! Thank you from the bottom of my heart!

  • serendipity09
    serendipity09 Member Posts: 769
    edited September 2022

    Maggie- my surgeons gave me options and made sure to le me know it was my choice. When it was time to schedule the surgery I was asked what I was having done and that was it. Not sure why the NN would even have the authority or the audacity to try and talk someone out of their decision.

  • lillyishere
    lillyishere Member Posts: 769
    edited October 2022

    mavericksmom, looking at the silver lining, you will feel so much better once all the breast tissue is gone and so is the breast cancer risk. If I was you, I would ask the doctor or nurse to put on their notes the problem you have with your shoulders as a warning. This way the surgeon will be more careful during surgery. After BMX, I had very painful rotator cuff muscles & tendons on the side the nodes were removed. It lasted for 6 months and I was in so much pain. I do yoga daily and I am very flexible but what they had done with my shoulder was terrible. If I knew then what I know now, I would have asked them to be careful and to put a warning for the surgeon.

  • serendipity09
    serendipity09 Member Posts: 769
    edited October 2022

    Lily - I'm dealing with exactly the same issues except in both shoulders since about 8 weeks after my BMX with TE"s (9/2020). MRI's determined rotator cuff tears in both. My range of motion on the side they removed the lymph nodes is at 60% and the underarm feels like it is stuck and as if there is a baseball in it. I actually had cortisone injections yesterday. I'm so frustrated with it. I did PT for a year and half with little improvement and I think I'm going back after the 8 week mark of this last surgery. We're hoping that things will ease up with having had the implants removed.

    Do you attribute the improvement in your shoulders to yoga? I need to find something that works, but am afraid that it might be too late.