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?

Parents
  • Hi everyone, I need of a bit of advice, not sure if I need to go to a & e. Had my port fitted on Wednesday, which has been itchy for last couple of days. Thought it was just due to the healing process. However, last night I noticed what looked like two blisters right next to each other. But they're hard to the touch and really itchy. Also looks like they could have been leaking a clear fluid.  This area is not near the actual wound, but right near the corner of the dressing, which I've now peeled away from this area. Any thoughts?

  • Hi Pippin, 

    Sorry you’re worried and sorry to hear it’s itchy…could you call you BCN? Or do you have a post op number you can call?

    I think if you’re worried you should go in, they’ll know straight away. Better to get it seen to sooner rather than later and will then also stop you worrying..I’m sure it’s nothing and just the port settling, that can take a few days but I think when you’re dealing with Chemo and lower immune it’s always best to get it checked. At least speak to someone over the phone first if you can.

    Are they blisters or part of the scab from the incision? Make sure you keep it clean…

    really hope it’s ok and nothing to worry about..sure it’s just part of the healing process. Do you have a temperature? That’s a good sign of any infection..

    let us know how you get on. Sending positive vibes your way xx

  • Hi Greeny80, thanks for your quick response. I'm wondering if it's some sort of allergic reaction. It's not near the wound site, just near to the corner of the plaster. Will try giving someone a ring, but wasn't sure anyone would be there on a Sunday. I have peeled the plaster away from the itchy area for now. I don't have any temperature, so I'm not concerned that the wound is infected at all. I may well end up popping to a & e, which is annoying as I was hoping for a rest day after a busy weekend!!

  • After reading your post the first thing I thought was it sounds like an allergic reaction to something touching your skin that's the most likely thing in my opinion x

  • Yes maybe it’s an allergy to the plaster? Maybe like you say take that off, clean it and then let it air a bit..have you had allergies to plasters.dressings before? Might just have got a bit sweaty or something underneath so maybe just needs to breath? I know you were saying you have been having hot flushes so that may have reacted with the plaster? 

    Maybe  just keep an eye on it today…if it gets worse then go in but it may clear up by itself..and if not feeling unwell then that’s a good sign. See how it feels this afternoon after taking the plaster off…hopefully it will calm..Hope you don’t have to go in so you can have a relaxing day. If you’re worried though then always best to get it seen to just for peace of mind more than anything..but if not getting worse you might be able to get hold of someone tomorrow. Keep an eye on your temp.

    Hope you had a lovely dinner with your brother and sister in law xX

Reply
  • Yes maybe it’s an allergy to the plaster? Maybe like you say take that off, clean it and then let it air a bit..have you had allergies to plasters.dressings before? Might just have got a bit sweaty or something underneath so maybe just needs to breath? I know you were saying you have been having hot flushes so that may have reacted with the plaster? 

    Maybe  just keep an eye on it today…if it gets worse then go in but it may clear up by itself..and if not feeling unwell then that’s a good sign. See how it feels this afternoon after taking the plaster off…hopefully it will calm..Hope you don’t have to go in so you can have a relaxing day. If you’re worried though then always best to get it seen to just for peace of mind more than anything..but if not getting worse you might be able to get hold of someone tomorrow. Keep an eye on your temp.

    Hope you had a lovely dinner with your brother and sister in law xX

Children
  • I have peeled the plaster away from affected area at the moment. They told me to leave it on for 7 days, so not sure whether to remove whole dressing. It's so itchy and skin is now broken and a bit oozy. A little worried it might get infected. The number they gave me is for Monday to Friday only. Typical, I have a problem on a Sunday! Did have a lovely meal out last night though. Hope you've been enjoying your weekend. Xx

  • oh not what you need but does sound like an allergic reaction and if oozing could quickly become infected so needs seeing.  Shame you don’t have an alternative number for chemo team when out of hours.  Let us know how you get on xxx 

  • Hi NGS, the itching has reduced since I peeled the plaster back a bit. I'm going to give it a couple of hours and see how it goes. If it gets worse or doesn't improve, I'll go to a&e. Hope you're having a good weekend. Xx

  • How are you doing Pippin? Hope the itchiness has gone. Did you go to a&e? Xx

  • 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

  • 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