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?

  • Oh so sorry to hear you've had a bit of a rollercoaster week. It's crazy how your mind can go to some far fetched places...i'm glad you now seem to have a plan and know what is in store for the 24th....and yes i think lymph node removal is pretty standard procedure for any breast cancer but hopefully it's just that, standard practice with nothing to see! Keeping everthing crossed the op goes well and biopsy results are good too!

    With dog walking, as Pippin says, i would go out with your friends and the dog and just get them to hold the lead?? That way you both get exercised!!

    Sorry to hear the neuropathy isn't great but good that it seems to be improving, that's a good sign. I guess it all just takes time...How quickly did you get signs of neuropathy? Was it after your first cycle? or further down the line? How many Docetaxol cycles did you have?

    My second cycle was last Tuesday so it's been a week. I would say i've felt a little rough round the edges but it's been managable....My body definitely prefers this new drug cocktail TC to the previous EC. I have been less nauseous which I am taking as a huge win. My oncologist said i would feel worse fri/sat/sun and he was pretty much spot on! Felt very achy, weak and flu like..still functional i wasn't bed bound or anything, still ferrying kids around and walking dog etc but definitely didn't feel great. Then had my last injection yesterday and was in quite a bit of bone pain with that..and upset tummy for a couple of days but today seems to be a little better and i've finished the injections so i'm hoping i've now turned a corner and can enjoy a couple of weeks of feeling relatively normal!...hoping my taste might come back a little too,, my mouth tastes horrible and all food, except chocolate weirdly, just tastes very weird! But i can't complain - 2 down 4 more to go. 

    Hair seems to be ok still...definitely thinning a little but you wouldn't be able to notice...will be interesting to see if anything happens later on in this cycle or whether the cold cap has been working its magic? I'm trying the cold mitts and socks...the mitts are annoying but the socks are quite good so i might try them again...who knows if it's a bit gimicking or not but worth trying i guess!?

    Anyway i hope you're enjoying some sunshine and that you're feeling ok about the 24th. Will be thinking of you. 

    Pippin - hope you're still feeling well today! xx

  • Hi Greeny80, I'm feeling well today. Went on my usual 2 1/2 mile walk with hubby this morning. Just ordered some dark nail polish, although not sure if supposed to wear it when using polybalm. But the polybalm doesn't stop the uv rays, so might put the polish on when outside for long periods. Still undecided about cold therapy for hands and feet. I'm glad to hear you are feeling a bit better after finishing injections. Start mine on Thursday for seven days, but had no real issues on previous 2 cycles. I did have a back ache one day when on first lot of injections, but think it was unrelated to injections. Annoying that you have issues with taste, hopefully that improves for you. Did you have this with the first cycle, or do you think it's the docetaxel? Xx

  • Hi Greeny and Pippin! 

    Yep, I'm sure I can join the dog walk and if they're going on a longer walk than I can manage, I can leave them to it and head back lol. 

    I had 3 rounds of Docetaxel.  I was pretty rough on that too, although I didn't get nausea with that one.  Just tiredness and lightheaded for about a week after each session.  Neuropathy kicked in pretty quickly with me.  I did warn my consultant that I would be that 1% when it came to side effects!  I also had a horrible taste in my mouth, quite metallic.  Check your tongue, as I got a couple of bouts of oral thrush on the Docetaxel which affected my taste buds.  I also really craved sugar when I was on that one, not good at all lol.  I only had 3 rounds of Docetaxel because of the neuropathy, so I was one short.  I should have had 4 x Docetaxel/Carboplatin and 4 EC but ended up with 3 x Docetaxel/Carbo and 4 EC in the end.  Honestly I think I was a medical nightmare for them lol.  I had a really bad allergic reaction to either the Docetaxel/Carbo or Pembro (immunotherapy) and ended up in hospital for 6 days - 2 of which I can't remember!  But high dose of steroid and lots of antibiotics, drips etc sorted me out.  I do think they were baffled for a bit though.  However, like I said, I do seem to be in that 1% bracket as what's happened to me during treatment has been very rare and I was already aware that my body is extremely sensitive to all medication so I kinda knew I was in for a rough one lol.  

    I'm feeling ok about the 24th thanks.  My sister arrives on Tuesday so that will help keep my mind off things.  She's going to take care of me for my first week post surgery, then a friend takes over for the 2nd week.  Mainly because I'm not allowed to lift anything heavier than a kettle etc, but it will also be nice to have company.  I have to be at the hospital for 7am on the 24th.  Yikes! 

    Hopefully the cold cap continues to work for you.  And good luck with the cold mitts and socks!  I'd not heard of these until you guys started to talk about them. 

    xx

  • Hi Carol, it does seem like you had a really tough time on the chemo, well done for getting through it. I've done really well on EC, but am really apprehensive about going onto docetaxel and Herceptin injections. I know the docetaxel is stronger and the Herceptin has a lot of side effects too. Looks like you've got a lot of support in place for post surgery, which must be reassuring for you. I'm wondering if I should get a cleaner organised for a few weeks, post surgery. I did this some years ago when I had a hysterectomy. I've lost touch with the lady, so would need to find a new one. Good luck for the 24th, hope it all goes well. Xx

  • Offline in reply to NGS

    Hi NGS, I just wondered how you are feeling, after your treatment yesterday. Hope you are doing OK. Xx

  • Hi everyone, hope you are all having a good day today and enjoying the fine weather. Xx

  • Hey Pippin,

    How are you doing? You sound very sprightly! That's great to hear...long may that last.

    I am good thanks, i've had my Mum here for a couple of days which has been lovely. Especially as my husband has been away ,so although wasn't planned like that it was perfect timing! We had a quick visit to the garden centre today and have been planting some pots which are giving me a lot of joy! I am totally not green fingered but having some pops of colour in the garden is making me smile! It's the small things!

    My energy levels definitely seem better so think i'm over the worst from this last round. Have woken the last couple of nights with a dodgy tummy  and woke up at 3am last night dripping in sweat, i had to change my pjs!...but feel good today. Taste feels like it may be coming back a little too so yes feeling positive and hopeful that i can enjoy 10 days or so of feeling good before round 3 on the 30th! 

    So far no neuropathy and actually so far nails seem to be pretty strong?? Will take a look at this balm that you have mentioned...have you thought any more about whether to do the mitts and socks? I'm going to take them again to the next round i think...now i've paid for them i may as well use them and i guess they can't do any harm and may even just help a little? who knows! 

    Hope you're ok though, sounds like you're breezing through this round too! hurrah!

    Hope everyone else is doing ok?? Sending lots of love and strength to you all  - always here for a chat if you need a rant or need to offload xx

  • Hi Greeny80, lovely that you have your mum visiting, especially with your husband being away. Gardening is something I love and I hope to pay a visit to the garden centre too very soon. It certainly does make you feel good to see a little colour in the garden. Good to hear your energy levels are improving and your taste is coming back. The night sweats are so annoying as it disturbs sleep so much. My night sweats seem to be easing a little since gp put me on some medication to help. She said it would take 2/3 weeks, but I'm sure it's improving already. I'm pleased to hear you're having no neuropathy issues, looks like the mitts and socks are doing their job for you. I have been looking into it, but most say they only stay cold for 20 minutes, which isn't long enough. Thought I might see how first docetaxel goes, if I have any issues, might give them a try on second cycle. I'm feeling good at the moment and due to start my injections tonight for 7 days. Have ct thorax scan for lungs on 26th, then breast scan on 30th. Docetaxel starts on 7th May along with Herceptin injection. Hope you enjoy your 10 days before cycle 3. Xx

  • I've just seen some cooling mitts on amazon which I'm thinking about. The cooling insert is the same shape as the mitt and you get spares to last longer. Thinking I could keep them cold in cool box. £35  for just the mitts, so not cheap. Would need to find something similar for feet. If I'm going to try it, I want the cooling to last for the whole session. This all get quite expensive doesn't it?

  • Morning! Hope you're still feeling good Pippin?

    Yes the cost of the mitts etc do add up. I'm debating getting extra inserts for the socks so they last a little longer?! But yes so far no neuropathy so maybe i'll wait anoher round and see. i took some spare ice packs with me in a cooler bag and switched them around a bit for the mitts...the mitts were a bit annoying and didn't last that long i have to say but the feet ones were good and my feet were freezing!!

    Just about to do a pilates class. I haven't been for a few weeks and have missed it so hoping today will feel good to be back on the mat! Then meeting a friend for walk so yes lots of nice things today.

    Hope youre continuing to feel well..good luck for all the scans on 24th and 30th and that Docetaxol goes well on the 7th. I think youll be fine!! xx