Communication with Surgeon
I'm repeating myself a bit as I mentioned this in the LUMPEX lounge but.... I've been incredibly frustrated with the lack of contact and follow up so far in my BC treatment. I had a LUMPEX on Thursday, Thurs went home, Fri a bit of a daze, but I fully expected to hear something from the Surgeon's office rather than having to wait for the week later follow up. The friend who was at the hospital with me is not a close friend, but he was there, and said the Surgeon noted to him that "All went well" That's it. Even the Surgeon who did my core needle biopsy called me the next day to see how I was doing (I was surprised actually) and that surgeon had absolutely zero bedside manners.
Also puzzling to me.. current surgeon was unreachable prior to surgery asend I had a couple of questions. Finally two days before I got a call from a nurse at her other office / other hospital (I didn't know there was a nurse....) Give how busy docs are , I wonder if it is even wise to use a doctor that doesn't have a nurse on staff.
I'm wondering if my expectations about too many things is just off. I mean this is all new to me., The hospital rushed by EKG and I had to go to a cardiologist to get a clear one. I knew when the tech did it (she was in a bad mood and actually was mumbling what a long day she had had)red that didn't bode well for my tests with her.
For example, the discharge paper said to do the exercises prescribed to me. Well, nobody prescribed any, don't know what they mean, and even though the hospital ambulatory surg unit left a "hows it going" voice mail on Friday, I could not reach anyone there until Monday, today.
Maybe it sounds like I'm just bitching and moaning, but I am at home recovery alone, and this kind of stuff just makes nuts. Maybe I'm just being "emotional" because I actually do have family nearby that has decided to ignore me and not be involved....(I guess the like button on facebook now substitutes for showing interest in someone ... etc..) and because of that I deep down just feel ignored anyway. There has been other stuff, and I am struggling to advocate for myself but I am trying. It is just pretty much me in this battle, I wouldn't ask others to get involved unless they offered to and wanted to.
There are onlly two REAL hospitals in my town so maybe I'll just have to move over to getting care at the other one.. be
Sorry for moaning etc but maybe the hydrocodeine is making me PLAIN GRUMPY!
Elllie
Comments
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Eleonora - what you described in your post is pretty standard. Follow up with the BS is usually 2-3 weeks post lx. This is partly to give you time to heal, and partly to accommodate time needed for the pathology report to get to the BS, in order to make further tx plans based on what they find. In terms of reaching the surgeon, mine had a nursing assistant, and I was told to contact her if I had any issues. I would contact her if I absolutely wanted to talk to the BS, and the BS would call me back. All that being said, I have not been happy with the communication style, nor with the information provided by my BS and MO. I'm sorry you're feeling down. It is a very tough, emotional shock to get the bc dx. All I can suggest is to continue reading the boards - I have learned a lot here, and knowing about the different dx, tx, and characteristics of this disease has helped me feel more in control of the situation. Take care.
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Thanks for your reply Stella Maris. Good to know.
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My BS gave me his cell number the first time we met. So that's really helped the communication. He's probably the best of all my docs with communication since I can actually reach him and don't have to go through the front desk and then through his staff. Dealing with my MO's office is a nightmare.
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When I had questions after my lumpectomy--is this sensation normal, how long do I have to wear this thing-- it was after hours. I called the hospital and told them my surgeon's name, and they had the on-call surgeon call me back that night. It turned out she had assisted and remembered me. It was so good to be able to ask my questions. Feel better, Eleonora, and try asking who is on call if you need answers right away.
Edited to say that the exercises mentioned on your paper may be the arm reaches to prevent frozen shoulder, but you need to find out when they want you to begin those.
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Eleanora - I had questions before my surgery also but the BS was at a conference between my first meeting with him up until several days before my surgery. When I met with him the second time, he did not like the questions I was asking. I should have bailed out but didn't want to delay my Mx. After my post surgery visit, I switched to another BS for the follow up visits that occur during the five years after my diagnosis. This one listens to me and has wonderful bedside manners. I just wanted to let you know that it is an option for the future.
Take care.
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Thanks ladies for the ideas. Will see what happens in tomorrow visit to review the pathology. I hope
she communicates better at that time. At least she is nice, more or less. My first BS was a very mean, MEAN person, (not just to me but I witnessed her scolding two staff members in two separate visits).
uffffff.
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I can completely relate. I am so upset because I called my PS twice because of my pain today (12 days post BMX with TEs) and no one, not even her secretary (who said she would get back to me) called me back.
It is a nightmare because I have to call this office which is just a business office who then transfers the call to the actual office where the PS is, or in the second try, emailed the secretary where the PS is, saying they were telling her to call me back. And she never did.
My BS, on the other hand, lets me email him, and is awesome all the time about responding to me.
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GeorgiaReds,
If you're not getting answers back from your PS...consider copying your PS on your emails to the BS, where you mention that the PS isn't getting back to you.
Or copy the BS on the the emails to the PS asking for help, where you recite your various (failed) attempts to contact the PS and get help.
Just a couple of ideas,
LisaAlssa
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Thanks so much LisaAlssa, but unfortunately I don't have my PS' email. I had an email written to the BS last night but didn't send it a) because supposedly the PS was supposed to be handling my pain management and b) I didn't want to be a complaining patient to two doctors or burden the BS because of the PS' fault.
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Ask the BS for help. You're his patient too! Tell him that you tried to reach the PS (describe your experience if you like), but haven't gotten any response.
Ask the BS for help. You're the customer, the docs are the service providers. You've already had your surgery...what happens if the BS does think you complain? If the BS will help, let him/her!
You shouldn't have pain issues. And if neither of these docs will help, ask some doc (even your PCP!) for a referral to a pain management specialist. If you still have a wound (I would expect you do, at only 12 days post-surgery!), another approach would be a wound specialist.
Don't just sit there in pain...they say you don't heal as well if you don't have your pain under control.
Please let us know how you're doing,
LisaAlissa
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Thank you for all of the great advice and encouragement LisaAlissa!
I called when they first opened today and the secretary apologized and said the PA was supposed to call me. Later she had a script ready that my husband picked up.
I had excruciating pain under my right arm when I tried to lift it, and after 1 pain pill it is down to a 2! Amazing!
Next time I will contact the BS and not sit and wait in anger. Thanks so much for empowering me as a patient! Thankfully tomorrow I have a f/u appt with my PS and a f/u appt with my BS on Friday.
Thanks again for all of your help and support, LisaAlissa!
❤️Georgia.
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