Oncologist appointment tomorrow - what questions should I ask?

After being diagnosed on 18th January and going through all the various test, I finally get to see the oncologist tomorrow. Would like to hear from anyone who has any suggestions about what questions would be good to ask. 

Also what are your experiences of how long it took for treatment to start after first oncology appointment. As my breast cancer is grade 3 and fast growing, I'm worried about it spreading, before my treatment even gets started. 

Was it suggested you have a PICC line or port?

  • Hi Carol, glad to hear you have got through another session of immunotherapy. What is it you have to have and how often? I've also done loads of washing over the last 2 days. All bedding now washed, dried, ironed and put away. Feeling a bit drained at the moment and did struggle on our walk this morning. I've had a few disturbed nights sleep, so not sure if it's that, the heat or still effects of the last chemo. Expected to have more energy by now. Hope your poor doggy has got over the fear of being  washed lol!  Have a lovely weekend and enjoy this gorgeous weather. Xx

  • Hi Pippin

    I have Pembro ...bleh blah something lol.  I have it every 6 weeks so plenty of time in between. 

    Tiredness is probably a combination of all of those things.  Just take it easy, listen to your body and rest when it tells you to. 

    You all have a lovely weekend too.  Hoping the weather lasts! 

    xx

  • Thanks Carol, just wondered if it's something else they'll want to put me on. I just looked up to see if phesgo was a type of immunotherapy, but it says this is a targeted therapy. Really hope I won't need anything else. I'm already due to start bone infusions of zoledronic acid sometime in August, which will be 6 monthly for 3 years. Xx

  • I would think if you were going to have immunotherapy you'd have been having it during chemo, as that's what I was put on, so it isn't something new exactly, but just goes on longer than chemo.  It's ok though, apart from being tired afterwards on the day of treatment, I've been pretty ok on it so far. 

    The zoledronic acid sounds similar to the ibandronic acid they're wanting me to start.  I found out on Wednesday that I could have that as infusions every 6 months rather than daily tablets.  I think I'll investigate that more when I see my oncologist next month. It sounds much less invasive on daily life than the tablet regime.

    xx

  • Hi Carol, sorry I missed this message, didn't get a notification. Hopefully won't need the immunotherapy, just the hormone blockers, after surgery. I agree the 6 monthly infusions are better than having the inconvenience of having to take tablets on a dail basis. I certainly prefer this option.  Hope you are well and doing OK. Xx

  • Hi, how is everyone doing? Haven't heard from you all in a little while, hope you're all doing OK.

    I had my appointment with the surgeon today, which went really well. I will be having a mastectomy and diep flap reconstruction at the same time. All my results have been good from my recent ultrasound and mri. They are pleased with how well the chemo worked and the surgeon could no longer feel the lumps. As the lymph node area responded so well, she no longer needs to do a full clearance. She is going to remove about half a dozen nodes, just up to the muscle, which is good news. Apparently the operation will take about 8 hours and I'll be in hospital for about 5 days. I'm having photos of my boobs taken at the hospital tomorrow, as the plastic surgeon needs them. Next step is an appointment with the plastic surgeon, who works alongside the breast surgeon. She removes the cancer and he does the reconstruction during the same surgery. She said it will be in a few weeks and it's quite likely that I can have my holiday first. Came out feeling really positive.xx

  • Offline in reply to Pippin24

    Hi everyone 

    sorry for radio silence !! 
    have been in hospital past 5 days following my surgery 

    I’ve had double mastectomy and the start of reconstruction with enhancers. 
    wow.  Long surgery and got to say after 3 surgeries now in last 7 months plus chemo my body feels battered 

    Its hard right now as have 4 drains and 2 pumps in until my appointment on 1 st August 

    recovery won’t really start until then to be fair 

    I’m just so grateful I’m now completely cancer free.  All Breast tissue is removed. 

    I start letrazole in 4 weeks and continue with bone infusions every 6 months plus daily Adcal ( vit D and calcium) 

    oncologist also prescribed amitryptaline for neuropathy in arms following chemo

    My hair is growing at a rate of knots 

    I do feel this has been the final hurdle albeit the highest and I hope in the coming weeks I can now start to repair and recover 

     do laugh and say these 20 year olds fake boobs better be worth it   lol 

    hope everyone is doing well and your surgery can be soon too Pippin 

    xx 

  • Offline in reply to NGS

    Hi NGS, great to hear that you are now through surgery and cancer free. That truly is amazing and must be such a good feeling. I've been told I will definitely be having a mastectomy and have opted for reconstruction at the same time, using tissue from my stomach. My next step is an appointment with the plastic surgeon, had my photos done for this last Friday. As both surgeons need to be available I was told surgery won't be until at least September. I mentioned we have got a holiday booked for September (which we were going to cancel), and she told me I'll probably be ok to go before the surgery. Will see what schedule plastic surgeon comes up with. I did start to worry a bit about time frames as I know you mentioned you have to have the surgery within 6 weeks of chemo finishing. I was worried the cancer could start growing again while waiting. I spoke to the breast care nurse about my concerns and she told me the phesgo injections would prevent this, so feel a bit happier about it now. Hope you're not in too much discomfort and I wish you a speedy recovery. Please keep in touch and let me know how things go. I have to say I'm quite nervous about the surgery. Xx

  • Hi @NGS that's great news re your surgery and so glad you're starting to feel better.  I know what you mean regarding hair, mine started to come back really quickly after chemo ended, I even had to have it trimmed last week!  My eyebrows are starting to thicken up, so had those tweezed at the weekend, but you can really see them now.  That's great news that you're no completely cancer free.  Woohoo!!

    Hi @Pippin  That's good news you have some idea of dates and that you can go on your holiday in September.  They will quite often work around you unless it's urgent.  

    We are all doing amazingly! 

    Radiotherapy starts for me today.  Hoping that will go ok.  They've advised me not to wear a bra throughout the duration of treatment whenever possible  to prevent friction and it feels really weird!! 

    We are totally smashing this! 

    xx

  • Hi Carol, good luck with your radiotherapy today, hope all goes well. Great that your hair and eyebrows are growing well. My hair has also started to grow, which is great. Xx