September surgery scheduled and need to chat?
Comments
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Maryann, I didn't expect to see you on here for another few days, so great to read about your progress!
To both you and Serendipity, when I had my DIEP surgery for single mastectomy, it was many days before I looked at myself in the mirror. When I did, I was completely horrified! No one prepared me for what I saw, not even a little. I wrote to my nurse navigator and told her how upset I was and how hideous I felt. I stupidly thought she might tell my breast surgeon, but not the whole team. She did. When I saw my plastic surgeon, quite a bit later, he did the examination, I believe he removed several drains, and then said, "I heard you were upset at the outcome." I about died, I was so embarrassed! I was just having an emotional moment. In hindsight, he should have prepared me for that, so I shouldn't have been embarrassed. Three years later, I marvel at the job he did! I hope my new pastic surgeon can make the implant somewhat like my reconstructed side. Both of your bodies will definitely improve!
Maryann, you do have many options so don't worry over what you look like now. It will change for the better regardless of your choice! Breast cancer is definitely an emotional journey! So glad your surgery was not as bad as expected!
Happy Healing to both of you! Don't over-do, stay safe and well!
I am still at the "hanger, waiting for take-off" otherwise known as playing the waiting game! 32 more days! ugh!
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hi Mavericksmom!
Thanks so much for the encouragement about the final results! And sharing your experience. That really does help because right now good grief it’s really hard to look at. My surgeon did tell me that it’s going to be quite a change and she sat there with me when we looked at it together for the first time. she was very compassionate and took her time with the whole process . And then she did briefly mention that yes there will be options and there’s no rush. she said you can do it six months later or you can do it six years later. So that made me feel good.And yes I sounded really good when I got home and posted that message because I was really drug-induced posting!!! didn’t really realize it until I reread it later!! lol
they should take our phones away from us until we’re completely sobered up!
And oh I’m so sorry that you’re in the hanger for that long
maybe they’ll have a cancellation and get you in sooner🤞🏻 I’ll be thinking of you while you’re waiting I’m wondering how you’re spending your time? Keep us posted!Thanks so much for the healing message
Hugs to all
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Thanks Mavericksmom for the reassurance! My surgeons all talk to each other on a regular basis. I see my MO on Tuesday for my three month check up. I'm sure she'll bring it up.
When I went in last week I did tell my PS I had not looked and she told me it was ok. She did reassure me from the beginning that we would get everything right. I trust her and believe her. It's just a matter of being patient and not too hard myself right now.
Maryann - your surgeon sounds really empathetic and I'm sure she'll do good by you too. By reassuring you that the options to rebuild are always there just says that she has the experience in knowing that people can, and will, change their mind and that she is ok with that. I love that about good, compassionate doctors. They don't take it personally or feel attacked (at least in my experience.)
Don't feel bad about the posting while still under the influence of anesthesia, I had kept my initial diagnosis quiet from almost everyone I knew. When I had my exchange surgery (a year and some months after) I went home the same night and posted on Facebook about it all including a picture of me with my short hair, lol. When I saw it the next morning I was mortified, but there was a sense of relief of getting it out there, but still wished I had not done it. I took the post down four days later when I was dx'd with the recurrence. Needless to say I barely told anyone about the recurrence and really no one knows about the DIEP.
I appreciate you ladies very much and thank you for being ok with me posting on this thread. The August thread is very quiet.
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Wow, both of you have very compassionate surgeons! I think my surgeons this time, are too. It wasn't that mine wasn't in 2019, my PS was a fabulous. He did a great job, but if he ever warned me about my post-surgery appearance, I missed that! Again, with time the swelling calmed down substantially! I tend to swell up like a balloon after surgery and I really did after my DIEP, especially in my hips! Also, I was dealing with difficult breast skin healing due to prior radiation burns from 2003. My new plastic surgeon, who is younger, knows my previous one, I think he may have worked under him at one point or was taught by him. My main worry this time has to do with lymphedema. I know I need sentinel nodes removed, and there is a possibility of more taken, but as much as I want to avoid getting lymphedema, I have lived with it in my left arm, better to deal with it in both arms than get cancer again! I think my expectations this time are much lower, not sure if that is good or bad, but the older I get, the less things bother me.
I totally laughed out loud when you wrote about being still "drugged" when you wrote your first post after surgery, Maryann! Sorry, but I could totally relate, and apparently serendipity can too! Hey, on here, you are among friends, so no worries! Both of you are totally awesome!
I know I have a long wait until surgery, but I also know it will come quicker than I think, and I believe that whenever it happens it will be the best time for me. I work full time in a middle school as a classroom aide. They call us paraprofessionals, but no one knows what that is. LOL Anyway, 5 classes of 6th graders and one of 7th graders keeps me hopping! My weekends go too fast! I spend the time cleaning, doing laundry and grocery shopping. Such fun, hahaha! So, the time will fly by, I am sure!
Hang in there ladies, the worst is over for you! Just keep thinking "CANCER FREE!!!!" Have a wonderful evening!
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thank you both so much for understanding!!
The traumatic posting is a bad habit of mine I did it so much during the LC I had to quit FB .. lol
It’s amazing how the doctors you have during an illness completely affect your outcomes. I’m happy that we have found just the docs we need at the right time.
Wow mavericksmom you do have your hands full at school!! That will help the time go by
Serendipity let your mind and body tell you when the time is right! It’s the hardest thing we will ever have to face and you need to give yourself that space!!
Thank you both again! It really helps being able to share the ups and downs of this illness 💕
Hugs and get some rest
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celebrating small victories today!!
💩💩💩💩💩🎉🎉🎉🙏😂
You're welcome!! Lol
Maryann
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and - 2 drains coming out today!! 🎉WOOHOO
It’s all the good wishes fr you ladies💕
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Maryann 😂😂😂 It is a true victory. I continue with taking Miralax daily as I'm terrified what might happen if I don't. Sneezing and coughing have become tolerable, but that first week the thought of coughing had me stressed out and that first cough...was not prepared for it.
YAY for the two drains! That leaves you with one? or is that it?
Mavericksmom - it will come quick. My surgery was scheduled back in March (I think I mentioned somewhere that I wanted to have a summer), but when June came around I was ready to get it over with, never thought August 25th would ever get here, and here we are almost three weeks out.
We call teachers assistants here Paraprofessionals as well. I was a school counselor for 18+ years. I'd like to go back part-time next school year, but we'll see.
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I love that you guys work/worked with kids!!! You’re both such kind caring people and the kids are/were lucky to have you both in their world!!
Today has been a roller coaster. I did get 2 of 4 drains out yay!! But I’m shocked at my incision sites. I’m completely concave. I don’t think that’s normal. I’ll see my doc Wednesday and jeez that’s gonna be my first question!!!
Thanks for listening 💕
healing hugs to everyone on this site
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Remember, you are fresh out of surgery, so the healing still needs to happen and with that healing still comes the physical changes. I'm sad that you are feeling this way, but the light at the end of the tunnel is that you can have reconstruction. I don't know exactly what you are feeling as I knew I wouldn't be able to handle it emotionally, again, that is me. I think you are strong and brave and I admire you and at the end of this you'll end up with some nice perky breasts.
I went to bed last night after really taking a look at my breasts and I was sad a I have no idea what is going on with the center of my breasts. The placement of the incisions are perfect for when I have my nipples and arreolas (did I spell that right?) tattooed on, and maybe that is why she did it, but it looks odd, I look like I have a quarter sewn onto the middle of each breast. Note to self...it is just temporary! It is just temporary!
Not to mention the belly new button, I try not to look at it much, it's not as bad as if was, but also odd.
They'll probably remove the other two drains at tomorrows appointment. That will be a huge relief for you.
Always here to listen!!
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thanks serendipity for the reminders!!! You’re right I mean I’m less than six days out of surgery but boy it’s still so shocking to look at. The visiting nurse came today and said that the doctor scraped out every piece of tissue she could find because I just tend to grow cancer and this was a recurrence . So that was a start at getting some explanation about what’s going on and she also was very encouraging about the new minimal reconstruction processes. I definitely am not up for a big procedure or multiple surgeries.
it sounds like your plastic surgeon really knows what they’re doing. Although I’m sure it’s hard to look at in this middle stage. I think that’s the problem is having to look at your body in the middle of the process. how Could it not make us sad!
yes it is temporary!! it is temporary! Thanks for the reminder😘0 -
When you said concaved that's exactly what I thought, that the PS scraped as low as possible. It's really impossible to get what you can't see and that is, I believe, the reason for local reoccurrences.
Yea, def too soon for you to think about another surgery, but at least you can start researching the reconstruction option that is going to work best for you. I think I would've been ok with the implants had I not had radiation. I just would've ended up having them swapped out for smaller ones. When I first met with my PS, I emphasized how I wanted to be as close to my natural size as possible. I didn't take into consideration the weight of the implants. I was huge so I ended up having shoulder problems on top of the capsular contracture and the pain on the side that the beast was in. I also was having other health issues that the PS was thinking was related to the implants. In the end I just wanted them out of me and DIEP was my only way to go (well not necessarily a DIEP, but a flap reconstruction.)
It's difficult to be patient and think of the positives when all we want is to heal and have some sort of normalcy. I don't know what normal is going to be like, but hopes it comes soon, for all of us.
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Maryann - how did your appointment go today? Or is it next Wednesday? How are you feeling today?
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serendipity it was today and the good news is drains are out!! you’re absolutely right - she confirmed today that she went after as much fat as she could because that is where the recurrences occur! She said it was so surprising but around 98 percent of my breasts were fat. It happens with some women that it might be hormonal.
I’m very frustrated because I’m over 5’8 and average weight and how the hell did that happen in my breasts?!?I always told everybody that I had my father’s boyish figure growing up - flat front and back!!! So go figure that the fatty boobs starting happening when I was around 60. If I knew this was going happen I would have eaten a lot more cake!
You must have been so disappointed to have to have the implants taken out After going through all of the treatments and other health issues not to mention the pain!! but it sounds like you’re on the right path and well on your way to looking and feeling like yourself!!
That’s really all we want basically is to look and feel like we did before cancer! I’m hoping you’re almost there💕
Thanks for being so supportive!!
Sending hugs and hope
Maryann
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Today was the day! My surgery began at 10:30 and was done at 12:15. That seems pretty quick to me. He took 2 nodes and preliminary test was negative; hope the final pathology is the same. I was feeling queasy when I woke up and they gave me something and I am fine now. I also have a scopolamine patch behind my ear. I just took a Norco pill so I hope it doesn't make me nauseous, as they have in the past. I ate some saltines, chocolate pudding, and leftover cheddar broccoli rice. I took a stool softener and will probably take Miralax tomorrow morning. I remember being badly constipated after my first daughter's birth and after the second one I took a laxative immediately and it was so much better.
The anesthesiologist gave me nerve blockers but I am feeling some pain whenever I move. If I hold really still I am fine. I have more range of motion than I thought but it hurts to move my arms so I'm trying not to do much.
The nurses made my husband practice stripping and emptying the drains before we left the hospital, but I will try and do it myself if I can. The nurses hung them on lanyards and I think I will keep them that way for now.
I cried a little when I woke up and the nurse was very kind and wiped my tears. I was so anxious last week, but I was very calm this morning. I guess you just reach a place of acceptance and do what you have to do.
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Maggie - I'm so glad you are ok and resting. I hope that your pathology comes back clear.
I get the same way, nervous and anxious leading up to the surgery and when I get to the hospital I'm as calm as can be. You go to sleep and before you know you're awake and it's over and it's time to heal.
Do not let yourself get too uncomfortable with the pain. Please be gentle with yourself and do not overdo anything.
You are in my thoughts and I hope for you to heal quickly.
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My surgery isn't until mid-October, but I am wondering if anyone else felt like they just didn't care about anything surgery or breast cancer related, while they waited for their surgery day to arrive? Of the three times I've been diagnosed with breast cancer, this time is by far the longest wait between diagnosis and surgery. I know it's the norm after the pandemic, but. I lost interest in the whole issue. I think it is because I feel perfectly fine, typical for breast cancer, but unlike waiting for most any other surgery. Also, I have no fear this time, I simply feel annoyed and frustrated at the whole situation.
I have known I have breast cancer since early August. I went through all the "shock" of diagnoses and saw both the breast surgeon and plastic surgeon in August. This Thursday I have my pre-surgery visit with my plastic surgeon and I really don't even feel like going, but of course, I will. I had a huge list of questions but ended up destroying the list. Looking at what I wrote I kept saying to myself "he will answer that", or "they don't need to know that." The only note I will take with me is a reminder to make it perfectly clear that if there is doubt about whether or not Medicare will pay for something, then I don't want it done! Also, I want to be sure I am being admitted, not just kept overnight for observation! With Medicare, one can stay overnight, yet be considered an "out patient" which ends up being super expensive for the patient! I am far more worried about the bills from surgery this time, than anything else. Being older and on a Medicare Advantage plan can be super annoying. I think they feel older people just aren't worth the cost of many procedures and treatments. The law that states insurance must cover reconstruction does not apply to Medicare, although as long as it is due to disease and not simply cosmetic, they will cover it.
So much time has passed without any contact with my doctors that I just want to forget the whole thing. I might have actually considered that if I had not already told my boss and others at work about my cancer. I am not depressed; I just can't get into a "breast cancer" frame of mind.
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Mavericksmom - I'm no longer in active treatment, but I often find myself telling other's that I'm just over it, I want to be done. I almost canceled my most recent surgery as I had had enough. The treatments/surgeries are all so exhausting. I thought that two and half years after my initial diagnosis I would've been done with this and I almost canceled this last surgery and was to the point that I was willing to live with my issues. I went through with the surgery and almost four weeks out I'm glad I did. I still have a ways to go, but I'm finally seeing the light at the end of the tunnel.
I'm sorry that this is your third time with this beast, but I think it's ok for you to feel the way you do, you are not letting worry and anxiety consume you.
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Serendipity, Thank you for your comments!!!! Seriously, I don't feel like such a bad person for feeling the way I do. I almost cancelled this time too! I didn't because I knew I had to get the cancer out and this is the only way.
I saw a lymphedema therapist this morning as part of my pre-surgical requirements. She was very nice, not much new but did find out I can have blood pressure and blood draws on and vaccines in my arm even if I have lymphedema. She gave me exercises to do after the drains come out. I tend to push myself, so most likely I will do the mild ones much sooner.
I then saw my Plastic surgeon and I found out that my mastectomy with expander and sentinel node biopsy, will be an outpatient procedure. Really changes my plans, for the better, I think. My husband is so much older than I am and I worry about his driving, although in 2019 when he drove me home from a five day hospital stay, he did extremely well. I asked the doctor if he had to stay at the hospital to wait for the surgery to be over and he said no. So, I told my husband I will drive the day of my surgery (I always do that) and then he can come in with me, go through the registration stuff, wait in the waiting room with me if he wants to and when they take me back, he can go home. The surgeons will both call him and talk with him after the surgery and tell him when to come get me. My daughter can be my back up in case it gets dark before I am released. I MUST BE RELEASED though!!!!! I am making that very clear to my husband and everyone that works on me that day. If for any reason they need to keep me over night, they MUST admit me to the hospital! Otherwise, even if I am kept over night, they bill it as an outpatient surgery which means mega bucks in bills! (My insurance company warned me about that!)
The upside is my co-pay will be $100 less, the downside is I will be pretty much on my own to care for myself that night, which is ok, I can do that. I feel safer at home. As I found out today when I went to the out-patient therapy dept, anyone can walk in the hospital and go wherever they want to. I assume surgery areas and possibly patient wards are locked but I walked right in and nobody stopped me. The girl at the desk asked me how I got up there, I told her I followed the directions the person who set up the appointment told me. She said I was supposed to stop at a security station, but when she heard my visit was for pre-admission she said, "oh, that's why you didn't know to do that!" All I kept thinking is that I don't want to spend more time than I need to in that hospital!
I totally feel like an old car, in the shop for the day, and then go home. Of course, they tell you to call if certain things happen, but I won't because anytime I called several times about concerns after my other mastectomy, I was always told to call my PCP! I think they tell you to call just because it sounds good.
I do like my doctors, but I learned over the years that everyone is super kind before surgery but on the other side, they always made me feel like an inconvenience. I won't even see my plastic surgeon for my post op visit, I will see his NP. That doesn't feel reassuring! At least I am totally prepared for that. I don't actually expect any problems. I also learned from past experiences to shut my mouth and not ask anything unless it was something I really needed to hear from them, like billing etc. I think it is "old school" to think doctors really care about their patients. I think they care that they do their job successfully, but they aren't interested in "feelings" so best for a patient to listen and limit their questions to what they can't find out answers to elsewhere.
Part of me feels foolish thinking breast cancer is a big deal. It only feels that way to those of us who go through the treatments. I don't think doctors really think it is a big deal.
I do feel better knowing how things will be done, but once again, it feels like being on an impersonal conveyor belt. I am glad that once this is behind me, I will never have to see a breast surgeon or plastic surgeon again, unless my implant breaks or something goes wrong with it before, I die. I know they aren't meant to last forever, but mine better! LOL
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Mavericksmom I'm so sad to hear that you feel that way. My whole medical team and the hospital staff (excluding the incompetent nurse who was assigned to me when I arrived to my room this last hospital stay) has been exceptional with me and always encouraged me to ask questions. I felt confident in knowing that I could ask and that no question was dumb question. Same with calling my doctors.
I usually see my PS's NP, but my PS always comes in. I've been with them for over two years and have developed a great relationship with them.
It feels better to be at home for recovery, but when I had my BMX I'm glad I had the one night stay (more like day and half as I was not discharged until evening the next day.) Only because I had no idea what to expect from the surgery and thought recovery was going to be worse than it actually was and would've been ok had I gone home. Sad that insurance has made this all about $.
My BS has has told me I could use my right arm (cancer and lymph node) for blood draws and blood pressure, but so many of the members on here scared me out of it lol. I inquired about using a sleeve while I traveled by plane and she said I did not need it, and she was right, I was fine and I traveled roundtrip every month April - Aug. Granted, I do not have LE thank God.
Since my BMX I've struggled with my right arm, my armpit is so tight and my ROM is so limited, I was in PT for a year and half and it would get better temporarily. I've come to terms with it. The other thing I'm struggling with is my biceps in both arms, I don't know if the muscles atrophied or what the heck is going on, but they hurt and it's been constant for almost two years now. The only thing that gives them relief is when I get cortisone shots for my shoulders. It 's never-ending.
Implants nowadays have great life span, hopefully that'll be the case for you.
You shouldn't feel foolish, please do not, breast cancer is a big deal, but I know what you mean. You don't know it's there and you're fine and then you do and everything falls apart thanks to chemo, rads, surgery, and/or the emotional toll.
Hugs to you!
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Thanks for the hugs! Were you able to drive yourself to your first post op visit? I am planning to drive myself, but I guess I will have to wait and see.
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serendipity, and fivetimes, did you see your breast surgeon for post-surgery follow up visits? I am assuming I won't see mine again since the PS already scheduled me for a one-week post-surgical appointment. He mentioned something about seeing me weekly, of course, by "seeing me" he meant having the PA see me. I had a PA for my 2019 mastectomy post-surgical visits, and he was very good. I see no point in having my breast examined by two people after surgery to check for healing. After the healing is complete from my Oct surgery, I see no need to see any breast surgeon again.
Did I mention I saw a picture of the PA I will see? She's a very beautiful, VERY YOUNG woman? You know you are getting old when you start wondering if doctors and PA's are old enough to be treating you! I am sure she will be wonderful, as have been all the PAs and NPs I have had.
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Hi Serendipity!! XOXO Hope you're doing well.
Hi MavericksMom!! Just thought I'd butt in to say that I have Medicare Advantage and I didn't have to pay a single cent for my surgery or hospital last year (single mastectomy and lympho-venous bypass). Of course I had already satisfied the $3000 "out of pocket" maximum after having chemo, scans, etc. for 6 months. I was also out patient but spent the night in the hospital.
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Hi Lw!! I'm doing good!! Hope are too!!!
Mavericksmom - my PS came in to see me the morning after my surgery and I saw her my first post-op appointment (first three drains removed.) I went in to see the RN to have my last three drains removed and PS came in. I was scheduled to see her NP for my second post-op, but she came in and took at look. I'm very happy with her.
I was not able to drive for my first post-op after my BMX. For this surgery I just started driving yesterday. I don't think you should drive so soon after surgery as you really shouldn't be using your arm(s) so soon, but you'll know.
I saw my BS one month post-op and very six months after.
My BS surgeon is in her mid-forties and beautiful. My PS and her NP look much younger, and are absolutely gorgeous.
Like LW, I was considered outpatient when I had my overnight stay so was not charged.
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serendipity, you do have a wonderful PS! When I go home the day of my surgery, no one will see me or hear from me until the week after surgery. I never even met the PA, so I am not feeling great about her doing the follow up visit. It takes me some time to trust someone enough to confide in and I really hate being viewed and examined by someone new. I hate my body and hate that anyone, even doctors, are looking at me! One of the reasons I didn't want to go to the city hospital was because I never knew who I was going to see. Apparently, that is how it is done everywhere now. Medicine for me has gotten way less personal and far too business like.
I definitely will not stay over-night. My insurance seems to be opposite of yours. If I am scheduled as an outpatient and if they keep me overnight for observation, it is still considered outpatient, but then I would get slammed with bills! I have that in writing from my insurance company. My PS said it was an outpatient procedure. I won't see my BS until the day of the surgery and probably won't see him much then either.
Why do you need to see your BS every 6 months? My PS will be seeing me often until I have the implant/tissue expander exchange. After I heal from that, I think I will be done seeing him unless it breaks or something. After this surgery is over and I have my implant in, I don't ever want to see another doctor associated with breast cancer ever again! I will not take an AI, so no need to see an Oncologist. I want to be done with all things breast cancer for the rest of my life! Honestly, I doubt I will live another 20 years, maybe not even 15, so my philosophy is much different than a younger person's.
As for driving, I forget what it all feels like. It has been almost 20 years since I had nodes removed. If I have pain, I won't drive, but I don't like others going with me to appointments, so I try to avoid it at all cost. I will just have to wait and see how I am doing. I don't plan on taking any narcotics either, but that could change too.
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I understand! The medical system is not what it used to be...about the medical needs of a patient. It's all about the money now.
I don't even care who's looking at my body anymore. I've lost all sense of dignity at this point (that is, medical professionals lol.)
My BS does a check up on me just to make sure everything is ok. I'll see her in 6 months and 6 months after that and I believe I'm done, or not. Now I don't know because of the recurrence.
Obviously I'll keep seeing the PS for post-op then I'll continue with her for stage 2 before the end of the year. Hopefully that will be it with regards to surgeries.
I don't like anyone coming to any of my appointments with me either. I'm glad I started driving yesterday, my son was the one taking me and I'm sure he would've preferred not to have had to sit around waiting me.
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i am seeing my surgeon in 2 weeks my oncologist recommended lumpectomy but I am not sure then chemo I don’t know if I can do all that
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Ericjo- I'm sorry you have found yourself here. Once you and the doctor and surgeon have a plan set in place you will feel better. The reality is is that none of this is easy, but it is certainly doable. All of us have been where you are right now and it feels awful emotionally. You can do this and we will be here for you.
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I am so confused about why out patients would be kept over night? I was told by my insurance rep NOT to let them do that! I can’t think about what is going to be done to me, only that I MUST go home before it gets dark! My husband can’t drive after dark. As if work stress wasn’t enough, this is stressing me out to the point where I think my head will explode
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When I had bmx, surgery started about 8am. Took a few hours. I slept off the drugs, and was kept overnight for observation. To make sure all systems were ok, I could walk, talk, pee, eat and keep it down. I called DH about 8-9 am next day to come get me. That was considered out patient and was billed accordingly. Much less than the $600 per day my insurance would have charged.
My gf just had a defilabrator put in. She also spent the night, and was considered out patient.
I’d check with your insurance again about that.
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