Uncertainty

FiFiK
FiFiK Member Posts: 16 ✭
edited January 18 in Newly diagnosed
Hi All
I've had surgery and got my pathology results today for invasive ductal tumour on right breast with lymph node removal. My PET scan is clear, margins for tumour clear and no lymphovascular or perineural invasion (probably not the right word), Ki67 less than 6%, Grade 2 not sure of stage. Despite these results my surgeon seemed very negative and now I feel so much uncertainty that these results aren't that great. Have other people had surgeons that haven't had the best 'bedside' manner? I'm feeling really low about everything now.
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  • Afraser
    Afraser Member Posts: 4,449 ✭
    @FiFiK

    Bedside manner is one thing, not communicating is another. My surgeon was not the ‘everything will be fine’ type but he was (and still is) good at stating the pluses and minuses rather than leaving you to wonder. It’s OK to ask! Your surgeon just might not realise how negative he seems to you. Sometimes surgeons and oncologists don’t know the patient’s preferences - tell all, keep my spirits up, or whatever. If you are happy to know the full story, let him know. Best wishes. 
  • cranky_granny
    cranky_granny Member Posts: 914 ✭
    @FiFiK I hope you have copies of all your reports 
    if it was me I’d get a second opinion have you got an oncologist and a breast care nurse i don’t see my breast surgeon anymore 
    I've only had one crap specialist that was a rads one we got another opinion and wallah she didn’t agree with him. And neither did my oncologist. 
    Hope you get some answer's re your next steps. 
    I don’t have much medical knowledge so my oncologist explains it all to me. And i go with a list on my phone of any questions I have. 

  • FiFiK
    FiFiK Member Posts: 16 ✭
    Thank-you for your replies. My surgeon didn't give me any pluses or minuses and I was left with confusion. I have my first appointment with the oncologist in 2 weeks so I probably need to be better prepared. Like other people newly diagnosed I feel overwhelmed so am a bit like a stunned mullet in appointments. 
  • Julez1958
    Julez1958 Member Posts: 1,267 ✭
    Hi @FiFiK
    my GP gave me a great piece of advice to take someone with me to all my appointments at least in the beginning as it was good to have another set of ears.
    I took my hubby and it was very helpful.
    My breast cancer surgeon was very much a “ glass half full” sort of guy and my oncologist much more conservative / guarded / negative.
    I am not medically qualified but your results seem good to me relatively speaking.
    Maybe your oncologist will put more “ meat in the bones” - I strongly suggest you take dibrine to the appointment with the oncologist.
    Take care 🌺
  • Mareealso
    Mareealso Member Posts: 40 ✭
    Hi Fifi, Once you move onto the "oncology" phase of your journey, you will only need to touch base with your surgeon to check up on scar progress and that will drop off..your main contact moving forward is the oncologist and the oncology nurses for ongoing care. Your surgeon has done his job, now you can move forward onto the next phase and your oncologist can give you a better idea of what, in their opinion, should be the next step going forward. Hang in there and feel free to vent here when you need to!!
  • cranky_granny
    cranky_granny Member Posts: 914 ✭
    @FiFiK best advice that comes up on here often for newbies is take someone with you. That 2nd set of ears is priceless they can take  notes and if they are your main support person give them your list of questions. I use my phone for a lot of my note taking as its always with me. 
  • Tri
    Tri Member Posts: 225 ✭
    @FiFiK have you considered debriefing with your GP? 
    My wise GP recommended I check in with him a few days after my appointment with the surgeon and before my first appointment with my oncologist, just in case I had questions.
    I found it helped me get a more realistic grasp of what I had been told and I was a bit more prepared for my meeting with the oncologist.
    Otherwise, I agree with all the comments made above! @cranky_granny mentioned a breast care nurse - my surgeon asked me if I wished her to refer me to a breast care nurse. Might you consider contacting the surgeon’s receptionist to organise such a referral? The nurse I had was very responsive and flexible and we did phone call consults. 
    Wishing you the best - what you’re experiencing is very understandable and familiar. 
  • cactusk
    cactusk Member Posts: 72 ✭
    @FiFiK
    like you, i was really lost & incredibly anxious until i knew my treatment path. Until that was explained to me, and i’d met both my med onc & rad onc, i was very stressed & scared.
    i took someone to all of my appointments, after each we transcribed the notes in to master doc. Helps me keep a diary & i can refer bsck if & when I’m trying to recall what happEned when. There are still some appointments that leave me really flat after, but i try to take a list of queries into every appointment.
    as many of the crew on here keep reminding me, a day at a time.
    absolute best wishes to you - hugs back
    kelly
  • FiFiK
    FiFiK Member Posts: 16 ✭
    thank you @cactusk I appreciate the comment about some appointments leaving you really flat. I can imagine that is really common for many of us but it is comforting to hear it from someone else.
  • FiFiK
    FiFiK Member Posts: 16 ✭
    Thank you @GorgyS for your considered response. Everyone's journey is different but the one common thread is uncertainty and its cousin anxiety. I'm also understanding that the medical professionals have to deliver hard news in a way that is realistic. I am lifted however by the spirit of friendship and community from this group. hugs

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