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?

  • Offline in reply to Pippin24

    Hello All.  Well it's been a weird one. Arrived full ofHello. Well it's been a weird one. Arrived full of anxiety about a new treatment. On top of that hospital had invested £40 k in new cold cap therapy so two new things to juggle. Then to be told I would also start the bone therapy Zometa. Panic overload. I also questioned if this impacted on my surgery to no avail. So some 5 1/2 hours later finally left. Cold cap was ok. Intense first ten minutes but then didn't need 3 changes as usual. Can't eat with it on as like ice crusher on head when chewing. I've got loads of meds. Daily calcium and vitD for 3 years on bone therapy now. Higher dose steroids too. Still got injections for 7 days Anxious as bone therapy can cause sever hip and pelvic pain. Nice on top of the severe hip pain I already have. Got a ton of Codeine. Also potential for fractures. Nice. So a positive. So far not engulfed with the chronic tiredness. Wonder if that's the steroids. We will see. Xxx

    hope you continue to do well Pippin. I had night sweats which I think relate to steroids.  

    xxx

  • Thanks Jolamine, feeling pretty good at the moment. Xx

  • Hi NGS, sounds like your day was pretty intense, hope you have a more restful day today. It sounds like the bone therapy came as a surprise to you, had they not warned you before the treatment day? Really hope that you don't experience any extra bone pain, as you've already had so much to deal with. I certainly noticed extra flushes yesterday evening, thought it was the phesgo injection, but maybe it is the double dose of steroids. Would rather if it was that to be honest, as they finish today. Good that you're still cold capping, hope that is still working well for you. Hope you have a good week and that you don't have too many side effects to deal with. Keep in touch. Xx

  • Hi Everyone!

    How are you all doing?

    NGS/Pippin - Hope you're still feeling good today and the steroids are doing their thing. Hope you're getting out for your walks and hoping you continue to feel well over the weekend too. Fingers crossed! Sorry you had issues with the port and that it took longer that you thought, glad you got there in the end! 

    Sorry you've got so much joint pain to contend with NGS as well as the injections. I hate having the Filgistrim injections....it's the last day (day 5) which always makes my bones sore, and just generally feel pretty wiped with them...so hope you're ok NGS. Deffo take the pain killers!

    I felt so sick/queasy with my last round of TC - i need to stay on top of my anti sickness next time around. i didn't take them last time as the time before i had no queasiness! So weird! I'm definitely feeling more myself now and so much better. I even went for a little run yesterday which was so good! I felt a little low over the weekend...frustrated i guess....putting on weight and not being fit and healthy and my mind wants to work out but sometimes my body doesnt' want to...i need to just learn to lean into that and let my body heal in it's own time...and remind myself that there is an end and not be so impatient!!...although worried about the weight thing with the hormone drugs and the medical menopause but guess i'll have to deal with that if and when and I just have to concentrate on the chemo part for now.....but yeah was  SO good to get out for a run yesterday it's so amazing how it changed my mood!! This gorgeous weather is helping too. Feel like a new women today!! I did a piilates class this morning too so again good for the endorphins which are needed at the moment .....another reminder that you do pop out the other side after each cycle and get to feel vaguely normal for a little while before the next round!

    My hair shed loads last week but i can still get away with just wearing a headband...just!...it's stopped shedding so much now but wonder if it will shed again later on in this cycle?? I don't really know if you have one big shed and then it calms for the rest of treatment or whether the shedding comes in fits and starts? I guess time will tell.

    Have noticed on my thumb and index finger a very light grey/dark line down the centre of each nail?!?! Not sure if that's going to get worse - need to inviest in some of that balm you are putting on Pippin....or perhaps it's too late to start?  Eeek!

    So far no neuropathy though so that's good!

    Anyway sorry for the ramblings - i really just wanted to check in on you! ....really hope you're ok! 

    how are all the puppies?!?!

    Take care xx

  • Hi Greeny80, I'm feeling pretty good so far and got out for a lovely walk this morning. Monday and and Tuesday night were difficult, as couldn't sleep because of double dose steroids. I took a Nytol last night and slept well, thank goodness. Steroids now finished, so hopefully things will be OK moving forward. Sorry to hear that you have been feeling queasy this time round, definitely not a nice feeling. They cut two of my anti sickness tablets this time, apparently don't need them now I'm on the docetaxel. Still take 1, which seems to be doing it's job. Good to hear that you are now feeling better and are able to get back to exercising, I'm sure it must make you feel a lot better. I'm also struggling with the weight thing, I really didn't expect to be putting weight on. I've been a target member at slimming world for the last 8 years, bit worried about next weigh in though, could be a problem. Sorry to hear your hair has been shedding, hopefully that will be the end of it for this cycle. Might be worth trying the polybalm if you're starting to get nail issues. Glad to hear you are having no issues with neuropathy, that's really great. I've not noticed anything so far, but it's obviously really early days for me. Start my seven days of injections tomorrow, they've been OK so far, so fingers crossed will be the same this time round. When is your next treatment? Hope you have a lovely day and enjoy this gorgeous weather.xx

  • Hey Pippin,

    Glad you're doing ok...sounds like you're actually doing amazingly. Fab news! Sorry about difficult sleeps though for those couple of nights...i was exactly the same...definitely blame the steroids, 3 am wake ups and then just have a fitful sleep after that! But otherwise sounds like you're sailing through again just like with the EC...amazing!

    Yes my oncologist said i would't feel sick on the TC this round took me by surprise! I'm just not usually a sickly person, I like to think i've got quite a hardy tummy etc and never got morning sickness or travel sick so it was definitely an unwelcome surprise this time around...BUT i'll just make sure i take anti sickness meds from the start next time around and hope for the best! Thanks for the polybalm tip, i'm going to get some i think. You'd have to look pretty closely at my nails to see anything but i've just noticed a little dark line...

    My next round is on the 21st so a couple of weeks of feeling good hopefully and enjoying this gorgeous weather! Just taken the dog out and it was gorgeous out today walking with no jacket! 

    Hope you continue to feel well on this one...Assume your next one isn't until 28th? 

    NGS hope you're doing ok too on this one?

    xx

  • I think the polybalm is definitely worth giving a try. Results from all the trials that were done, seemed really good. You can find information about it on youtube, if you want to take a look. Must be lovely taking the dog out walking in this amazing weather. My next treatment is 28th, so a week after you. I'm so pleased to be now over the halfway milestone, three more to go. Still waiting on ct scan results, might give someone a call tomorrow, as it's now been two weeks. Have tried not too think about it too much, but it is difficult. Hope you continue to feel well over the next couple of weeks. Xx

  • Hi everyone, hope you're all doing OK and enjoying the lovely weather. Have managed a walk this morning, but am noticeably more tired. Have developed a bit of a strange taste in my mouth, which I know is one of the known side effects, also chest feels a but achy. Started my injections last night, I have noticed some aching in joints, but nothing too bad. Had planned to do some gardening today, but not sure I have the energy. Phoned yesterday about lung ct scan, but results not back, apparently outsourcing them as so busy. Told me to phone back next week. Love to hear what you're all up to this weekend. Xx

  • Hi Pippin 

    been following you all but not been up to joining in until now.  Sorry to hear you’re not feeling great.  Listen to your body and rest if you need to. 

    I’m doing ok.  Drove for the first time today after surgery and had a wander around my local town.  Treated myself to an iced latte.  Yummy! Surgery went well and I seem to be healing well. Just got some fluid build up where they removed my sentinel node but BC nurse said it was normal and the body should absorb it in a month or so.  They’re reluctant to drain it as it could cause infection and would likely return.  So just leaving it be for now and doing my exercises like a good girl lol.  Immunotherapy has been paused until they get the results of my biopsy.  Apparently they want to “see what it’s done” for me so far.  Am enjoying the respite and hair, lashes and brows are growing back at a rate of knots! Have even ventured out in public without a wig as it’s been so warm and no-one has batted an eyelid.  Might start a phased return to work at the back end of next week, see how I go. 

    Hope everyone is doing ok and enjoying the sunshine x

  • Hi Pippin,

    Sorry you're feeling a little more tired but glad you still got out for a walk...maybe instead of gardening you can find a lovely spot in the shade and have a nap this afternoon!...Sorry to hear about your taste too. I had that, and still have that, from my first dose!..it's so weird and annoyingly does take away some of the enjoyment of eating...fruit in particular tastes very odd and un appetising.

    Sorry about the aching joints too. Hopefully it doesn't get worse and that it's just the jabs and that will ease as soon as you stop those again. I had horrid joint pain on day 5 of the jabs and then they quickly eased again...

    I have just been to watch my son in a football match it was a final, sadly they lost but it was an amazing game, very close. My daughter had dance classes this morning and is now off to a Go Karting party so just about to drop her and a friend to that and then heading to another friends house for a bit this afternoon....and then tomorrow my son has a cricket match!...a typical weekend of playing taxi to the kids!!...but i wouldn't have it any other way!

    Loving this sunshine and hope you manage to enjoy it too but look after yourself. The weekends are always the hardest for me after my Tuesday chemo but then you do come out the other side...so hope you bounce back again soon. But take it easy today and tomorrow and hope your energy returns soon..

    take care xx