Surgical oncologist/staff roles

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EminGA2018
EminGA2018 Member Posts: 49

hi!

I’m wondering if someone could share their experience with their surgical oncology team. I have had a two-hour consultation with my surgical oncologist. I submitted blood, had an Ultrasound and got a written recommendation for mastectomy.

I then met with my plastic surgeon and discussed my goals and what to expect.


I have some questions regarding the initial surgery. It’s hard to get hold of anyone as the surgeon is on vacation until my surgery. Is it typical to have one appointment with the surgical oncology team and move right to surgery?

Was anyone at the SO’s office available to you regarding questions?


thank you in advance. I’m trying to manage expectations and get a general sense for how this process typically goes. I know some cases are more emergent than others.

Comments

  • ctmbsikia
    ctmbsikia Member Posts: 1,095
    edited August 2021

    Hi. I had 2 appts with SO with the 2nd being the visit where I decided on LX instead of MX and that's when they scheduled surgery and all that was required before (like an EKG). Nowadays, possibly a covid test. I don't think it is too out of the ordinary to be scheduled after a 2 hr. consultation. Have they set you up with a patient portal? That is my preferred method of communication with any member of my team. I usually get same day or next day replies. Good luck to you.

  • SpecialK
    SpecialK Member Posts: 16,486
    edited August 2021

    I had one consult with the SO, but it was a pretty long appointment like yours, and I was free to ask as many questions as I needed to. My timeline up to that appointment had been mammography and US on 9/9, biopsy on 9/22, results on 9/27, SO consult on 10/5, so I had done a lot of research prior to the SO consult appt. and was able to ask everything I had concerns about. Due to adoption I had no access to family history so my SO wanted genetic testing prior to making a final recommendation on type of surgery (his initial recommendation was lumpectomy), and that process took three weeks from the point of diagnosis, so during that time I also had a consult with a PS to discuss options. I had another very brief appt with the SO after the genetic results came back to let him know what I wanted to do - which was a skin and nipple sparing bi-lateral mastectomy, and the SO was totally on board with my request. Turned out to be a good choice as I had more stuff than initially thought in the cancer breast and undiagnosed ADH and ALH in the "prophy" breast. Surgery was set up with the hospital and the surgeon's schedules were coordinated by the SO's office and the surgery was scheduled for 11/1. I did not see the SO again until surgery, and I did not speak to anyone from his office prior to that. Since I didn't have any specific questions I did not seek out any info from them aside from what I had already asked about, so I don't know how that would have been handled if I had needed it. Are your questions related to the mastectomy part, or the reconstruction part? Do you have a nurse navigator you can speak with? I found that after surgery I was pretty much handed off to the PS other than a couple of very brief appts with the SO's office to do a general post-op and remove drains. My MO and PS took over my care from that point on other than initial semi-annual checks with the SO for the first couple of years.

  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited August 2021

    I don’t know if there is any “typical” with respect to meeting with surgeons/plastic surgeons. However, regardless of how it happens, your surgeon should have someone available, PA or NP maybe, to answer any questions that you may have. I met with my surgeon and plastic surgeon. My bmx was going to be pretty straight forward and was both skin and nipple sparing. I spent more time with ps as the possibilities for different types of recon were all new to me. Again, whether your doc is on vacation or not there should be someone available to answer your questions. Take care.

  • EminGA2018
    EminGA2018 Member Posts: 49
    edited August 2021

    Thank you to everyone for your responses. I do have a nurse navigator but she just gives me the number to call my SO’s nurse..which I have done a few times. I am pretty self sufficient and have done my research but I really feel like I should have more input on my case rather than generalities. Unfortunately, my SO’s nurse is overworked and non-communicative. If I had unlimited time and resources..I would go elsewhere. It helps to hear from other in my situation though. I don’t think it’s my expectations that need managing. I think I need to push harder to advocate for myself.

  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited August 2021

    emin,

    Although none of us are surgeons, I’m sure we’d be happy to answer any general questions you have about mastectomies. Of course we can’t speak to your case specifically. I will say that my surgeon was the person I ended up having the least contact with post surgery (never needed to see him after my drains were pulled) but going forward, I have found that good communication was very important with my other providers. I know you would prefer better communication but if you can’t switch surgeons please know that your relationship with the surgeon may be a fairly short one. Take care.

  • EminGA2018
    EminGA2018 Member Posts: 49
    edited August 2021

    Thank you exbrnxgrl! I called my plastic surgeon to ask for advice and it turns out that I am one of three patients unable to get hold of anyone in the SO's office. I also found out that nobody communicated that I am having a bilateral surgery so the PS is ordering just one implant/spacer rather than two unless they hear back from the SO office. I have two main questions...1. How many breasts are they taking 2. Are they taking my nipple(s). I am considering postponing the surgery as my surgeon does not get back until the day before my surgery and I have been told that I will not get these questions answered until the morning of surgery. I am so appreciative of the support on this site! It is very comforting to know that my time with this office is short!!

  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited August 2021

    Oy vey iz mear ! Those are two very important questions that I think need answering before you’re wheeled into surgery. Did you discuss a bilateral or a uni? Did the surgeon say it’s possible to do a nipple sparing procedure? This varies widely based on the location of the cancer relative to the nipple.Is the surgery going to be skin sparing as well?

    I don’t like to influence others because we all look at these situations differently but I would be inclined to postpone until all of my questions are answered and I was very clear about exactly what is going to be done. If you are considering postponing, would that allow you to seek a consult with a different surgeon? Take care.

  • EminGA2018
    EminGA2018 Member Posts: 49
    edited August 2021

    The nurse checked my chart and said he wrote "nipple sparing possible?" and never decided before flying off to Alaska. I think I may have to postpone..It's tough because I am scared of this cancer...but also scared of someone making an irreversible mistake because of lack of communication.

  • DebAL
    DebAL Member Posts: 877
    edited August 2021

    Emin, "nipple sparing possible' may be on the consent because although it may be planned if there is insufficient blood flow etc it may not be possible and that is not known until you are in the operating room. All possibilities need to be on the surgical consent form as they can't wake you up in the middle of surgery to ask you!

    If you don't feel comfortable it may be best for you to postpone. Sorry for this added stress. Take care

  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited August 2021

    Emin,

    I think that because they can’t guarantee you that the nipple can be spared that’s why they use the word possible. I don’t think it reflects any uncertainty on your surgeons part, in terms of what he wants to do, but rather that there are mitigating factors as DebAL explained. I went into surgery with the intent of having one step implants. My ps was very honest and said that he would aim for that but if conditions did not allow for one step or he thought the aesthetics wouldn’t be good, he would have TE’s available. This was reflected on all consent documents. Between imaging and biopsies the docs have a good idea as to what’s possible but things can change during the actual surgery if medically necessary. Take care.

  • EminGA2018
    EminGA2018 Member Posts: 49
    edited August 2021

    Exbrnxgrl & DbaL - that makes sense.Thank you so much for clarifying that. The nurse there told us what was written but didn’t explain anything.so I assumed he hadn’t decided yet. This is all so new

  • Cowgirl13
    Cowgirl13 Member Posts: 1,936
    edited August 2021

    Emin, if it was me in your position, I would definitely postpone surgery until I understood everything--and didn't get rushed answers. Good luck!

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