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 Greeny80, no I didn't go to a&e, couldn't face sitting up there for hours. Initially I took off the waterproof dressing, but left gauze dressing in place over the wound. It left the itchy area open to the air. NGS mentioned an out of hours number and I found one in my paperwork. I gave them a ring and they were really helpful and reassuring. They told me to take an anti histamine tablet for a few days. Also to remove the gauze ( there are steri strips underneath) and bathe in cooled boiled water. Then re-dress in different dressing from the one used.. It's now so much better and the itchiness has pretty much gone. They reassured me not to worry as it's not near the wound and likely a reaction to the dressing. They also said hospital would check it out when I go for pre chemo bloods at the end of the week, as port will then be used. Hopefully all will settle down now. Xx

  • Glad you managed to find a good out of hours number, they seem to have given you some good advice and glad to hear no a&e trip was needed and that it’s already feeling better. That’s great to hear. Have a good day! Xx

  • Thanks, hope you had a lovely weekend. We're taking my elderly parents out for lunch today, as I have cycle 3 next Monday and will then isolate again for 10 days. Have been planning a birthday celebration over the weekend for my Dad's 90th Birthday in June. Finger's crossed I'll be well enough, as I'll be on docetaxel by then. My hubby says I need to think positive thoughts and it will be plain sailing, just like EC. So that's the plan! Xx

  • Hi Greeny80

    I had a very rough time with chemo unfortunately.  I had 3 hospital admissions while I was on docetaxel, one of which I didn't think I'd ever recover from.  But as usual the medical staff were amazing and I was out of hospital after about 6 days.  While I was on EC, the nausea was debilitating.  The anti sickness tablets didn't work for me so they gave me something stronger, which made me worse!  So I had to stop taking those and just deal with the nausea.  I also got pretty bad neuropathy while I was on the Docetaxel/Carboplatin, so my consultant stopped treatment early.  I had 6 rounds of chemo in total. However, all the pain seems to have been worth it, as they can now find no trace of the cancer in my breast.  I still need breast conserving treatment (scheduled for the 24th April) to remove some residual tissue, and they want to remove 2 lymph nodes to biopsy, just as a precaution.  I'm hoping that had anything been in my lymph nodes, it would have been zapped by the treatment already.  Surgery is being done as day surgery and they've said I won't notice any difference when I look in the mirror, except for a small scar on the left side of my breast.

    Once surgery is done, I will start radiotherapy for 15 days.  I also need to continue immunotherapy (which I've been having alongside chemo since I started in October last year) for a further 6 months, so not out of the woods yet.  I had my first solo immunotherapy treatment on the 28th and so far I've been ok, apart from tiredness and a very delicate digestive system! 

    Good luck with TC (I'm not sure what that is?) tomorrow.  Hopefully as you didn't lose your eyebrows with EC, you won't on TC! :) 

    Let me know how you get on x

  • Oh gosh, that sounds scary and tough. I"m so sorry you had such a rough time with it. glad you're out the other side though and amazing that they now can't find any trace of cancer. that's great news. Wishing you all the best for your surgery and for the lympn node biopsies on the 24th. Really hope like you say the chemo has worked its magic and obliterated any sign of cancer. Let us know how you get on.

    TC is Cyclophosphamide ( so the C part of EC, i was allergic to the Epirubicin) and then  the T part is  Docetaxol....so Cyclophosphamide plus Docetaxol for 5 rounds...worried about the neuropathy..i've bought myself some ice mitts and socks so hoping that might help...not sure if thats a bit gimicky but i'm willing to try anything!...not sure how long the mitts will stay cold for either but will give it a go. Have you still got neuropathy? Is it sore or more pins and needles?? Hope it's easing a little..

    Yes so far hair seems to be totally fine and no sign of shedding so maybe the cold cap is working its magic but we'll see what happens on TC! Have just started taking my steroids ahead of my next cycle tomorrow! It's weird knowing i'm not going to be feeling great for the next little while when i feel so good this week...but at least then i can tick another one off!!

    Hope all the immunotherapy treatment is ok and miminal side effects with that and yes good luck for the 24th. xx

  • My son sadly got tonisilitus on weds/thursday so we had a pretty quiet start to the weekend..but the antibiotics kicked in pretty quickly so he was much better yesterday...we went out for a lovely meal together...enjoying the last few days of feeling good before round 2 tomorrow!

    A lot of people i've spoken to have said they found the docetaxol much easier to deal with than the EC so really hoping the same goes for you. Keeping everything firmly crossed and really hope you make your Dad's 90th...

    Good luck for your next round and enjoy your week 3! xx

  • Unfortunate that your son got tonsillitis, but glad you managed to get out for a meal together. Pleased to hear that people have said they have found docetaxel much easier. Will stay positive and hope that is the case. Did you decide whether or not to try the cold therapy for your hands and feet? Will be thinking of you tomorrow, hope all goes well this time round. Xx

  • Yeah the antibiotics kicked in pretty quickly and he's totally fine now thankfully! Poor thing though, he was really unwell for a few days. 

    ...and Yes i bought some mitts and socks from amazon, they are currently in the freezer! No idea if they're going to work and actually no idea how i'm going to keep them cold enough for long enough but thought i would give it a go and see. I actually bought some single use ice packs, which isn't great for the environment but was the only way i could really think of to pop those in when the original ice packs start to go warm..so will see how that goes! She did say that neuropathy was most likely to be my biggest side effect but that they would very carefully monitor it and may adjust my dose accordingly...she said that they do that all the time, they start of with a generic dose based on height and weight but that everyone reacts so differently and tolerates drugs so differently that they are constantly tweaking..they just said i needed to be really honest with how i was feeling! Sounds like you tolerated the EC so well though that hopefully you'll be the same for the Docetaxol next week..keeping everthing crossed. Must be nice to know you've finished the EC..nearly there!!!! 

    I'll let you know how i get on with the cold mitts and socks. Have you bought any yet?

    Hope the port is going ok today...have a lovely evening! xx

  • I haven't actually bought any mitts and socks yet, thought I'd wait and get a review from you first. If I do get them, I thought I could maybe bring a cool bag with ice blocks, to keep the packs frozen until needed. I didn't know you could get single use ones and not sure how they work. Will start doing a bit more research prior to cycle 4. Port area much improved today thankfully. Let me know how it goes tomorrow. Xx

  • I’ll report back!!! 

    …then I can send you some links, if I’m allowed to on here?! I think you just snap the single use bags and it activates something inside which turns to ice!..but it’s annoying they are single use so not feeling that good about it..I’m going to take a cooler bag but I think with the mitts they only stay cold for 30 mins or so and I think my treatment is going to be a little longer than that..but I’ll let you know!! Xx