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
  • How are you all doing ladies!? Just wanted to check in!! For those who had their second round this week, (Pippin, madhatter, Rufusblue, NGS)  I hope you’re doing ok and hope those side effects are still minimal…and really hope you can enjoy some fresh air but also put your feet up this Easter weekend.

    i’m good, slight niggly throat still (day 10!!) but gargling difflam which is working really well. Slightly constipated but energy back and hoping for a good week or so before round 2 on the 9th! 

    Oh and my taste might still be a bit off but it turns out chocolate still tastes good!!! 

    Hope you all enjoy a lovely Easter. sending hugs xx

  • Hi Greeny80, lucky my side effects still minimal, a bit of constipation, which I think is the meds. Last time it eased up once I stopped taking the tablets. My injections start tonight, so hoping that goes smoothly too. Annoying for you that it is affecting your taste, but be sure to enjoy an Easter egg over the weekend. Glad to hear the Difflam is helping your throat, might have to ask for some, if I get sore throat this time. I had one really bad night of hot flushed and getting up for the loo, but the last two nights have been a bit better thank goodness. As you mentioned, hope everyone else is doing OK at the moment. Sending hugs and thinking of you all. Xx

  • Hey! How many injections do you have to take? I’m not looking forward to those either next time around..assuming I have to have them again with the slightly different drugs?? So horrid feeling hungover..especially when you haven’t had a good night out before! Sorry you’re finding them tough..Hope you can enjoy a few days feeling better once they’ve finished?? I’ve felt super dehydrated I can’t get enough water in and craving cucumber I think for the moisture! So weird! Have you got anything for the itchy skin? That sounds hard too..sorry you’ve been struggling a bit. 

    First week I just wanted carbs!..which I don’t usually eat a lot of, I’m usually pretty healthy but I just wanted salt and vinegar crisps for the nausea and crackers and bread! I then lost my taste so it put me off eating much the second week I feel like coming into week 3 I’ve just got my tastebuds back a bit so eating normally and healthier..think my weight is going to fluctuate quite a bit!..which I know is going to be hard mentally as I’m such a fitness and health freak and conscious about my weight but I just have to try and lean into the fact things are going to be different for a while and my body just needs to deal with the drugs!! And to remind myself it’s all for the greater good.

    Sending lots of love. When is your next round? Wednesday? Hope it goes ok. Sending positive vibes your way xx

  • Thanks for the tip regarding the seat belt, hadn't thought of that. Will bring a couple of bra options for after. Wishing you good luck with the docetaxel next week, hope it all goes well. I've also been told I'll have to double up on the steroid when starting docetaxel and also start taking the day before. I've read on a different thread about someone using cold therapy socks and gloves to help prevent neuropathy, think I mght ask about it at my next treatment. I've seen some stuff available on amazon. Bowels seem back to normal now  I seem to only get the problem while on the meds. I took laxido this time, which did help a bit. Also still taking hot lemon drink every morning; which apparently helps constipation. Don't know whether this helps or not, but it's no harm to do, so will keep it up. Good to hear you found something that works for you. Just off to get blood test for tomorrow, will let you know how it goes with the port. Xx

  • Well done on being a target member.  I really struggle with my weight and lack of mobility makes it hard to exercise but feel right now I have too much else to focus on.  It is upsetting for me as I used to be a Health freak and very fit but the hip arthritis put paid to that.  I crave fruit and vegetables after treatment and love these which is good.  I guess my body is lacking nutrients.  

    I’m guessing I’ll have the steroids every time which does not help with eating as makes me so hungry.  

    last injection today.  Thankfully.  

    I wondered about hot flushes.  I do get very hot at night but I had my ovaries removed 12 years ago so bypassed menopause. I think it must be a combination of the chemo as well perhaps.  So sorry this disturbs your sleep.  Will you have to refrain from HRT post treatment.  I never took this post my surgery due to cancer risk in family but do think that likely contributed to my osteoarthritis.  

    it’s such a juggle isn’t it 

    any how’s hope you have some reprieve again now before next round and can enjoy the walks in the sunshine 

    take care xx 

  • So far I am Having injections from day 2 for 7 days after every round of chemo.  They are meant to boost white blood cells.  These for me cause much more challenge than the chemo itself. 
    I have one more round of EC then on to Docetaxel.  I’m presuming I’ll still need steroids and injections but not certain yet until I’m told.  

    I have two weeks now till next round and if first cycle anything to go by I’m hoping I’ll feel more human from Wednesday Thursday this week and have a bit of time to recuperate before round 3. 

    when is your next cycle ? Xx 

  • Yes I’ve got the gloves and socks in my Amazon basket!! Have read about that too for neuropathy so definitely going to ask when I go in next week. Anything to help!  

    so far no sign of any hair loss so maybe the cold capping is working too? Although maybe it’s a bit early and I didn’t have the full dose so we’ll see!

    Hope bloods come back ok. Xx

  • Yes i had to have those injections too but as i only had half a dose i only needed to have 3 doses. Next time i imagine i'll have to have all of them....they did make my hip hurt a little, i think it was the injections rather than anything else but you just dont know! Putting so much into my body with injections, steroids, anti sickness, laxativces etc...i hate taking any medication at the best of times so this goes against everything but i know this is a special circumstance.

    I need double the amount of steroids for the Docetaxol part too, having it with Cyclophosphamide...and have to take 4 pills twice a day, the day before, day of and day after...i'm sure youll be the same but i'm sure they'll tell you!

    So sorry you suffer so much from osteoarthritis. Do you think that was the HRT? I worry about how the chemo and the hormone pills will effect my bones too..and also how i'll deal with being plunged into early menopause...guess time will tell..and no point worrying about something which hasn't happened yet i guess?!?!

    Hope you start to feel better soon so you can feel relatively normal for a week or so, I feel so good this week so am dreading being plunged back into chemo and side effects next round! My next cycle is next Tuesday, the 9th!

    I have my daughters 13th birthday tomorrow!...and then my husbands birthday on Thursday! It was mine last week so it's a busy month! Just glad i'm feeling well this week for the celebrations!

    Take care and glad you're on your final injection..yay! xx

  • It must be so difficult to do exercise when you have mobility issues, frustrating especially when you used to be keen on health stuff. Think you're right though, you need to focus on this current stuff right now. I've also been eating loads of fruit for lunch each day. I've eaten lots of apples, strawberries and red grapes, I have also made sure to include blueberries and walnuts as I've read these are good for cancer patients. Good that it's your last injection today, I have 2 more to go. Unfortunately I can't go back on HRT in the future, as my cancer is oestrogen fed. I will just have to learn to live with the hot flushes. Just had a lovely walk and feel fairly relaxed and ready for port tomorrow. Xx

  • I'll be interested to hear what your team thinks of the hand and feet cold treatment. Brilliant that you have no sign of hair loss so far, fingers crossed that this continues for you. Xx

  • Hi everyone 

    just checking in 

    pippin I hope you have got on well today with the port and can now relax again 

    as per first round last 7 days of injections have floored me with day 7 being again by far the worst 

    I am seriously thinking of asking if I can stop at 6 days as I wonder if the build up just gets too much for me 

    despite the cold capping my hair is shedding quite a bit.  It started between week 2 and 3 after first cycle and I’m finding it quite upsetting.   I do still have a good head of hair and so far no bald patches. My hair was very thick before. This makes me think I should persevere  at the moment. 

    i think the osteoarthritis began after my total hysterectomy and removal of ovaries   I was only just 41 at the time and it was after fibroids were found thankfully non cancerous  

    I took Tamoxifen for 5 years after that and avoided an estrogen supplement due to cancer risk   Makes me chuckle as my breast cancer is still ER positive despite all my attempts 

    anyhows hoping everyone is doing ok and best wishes to those having treatment this week

    xxx 

  • Hi Pippin 24, hope everything has gone well today with having your port fitted,  my veins are already playing up with all the blood tests so not sure if this might be the way forward for me xx

Reply Children
  • Hi Rufusblue, all went well today thank you. Was a bit of a shock when they told me I wouldn't be sedated, just local anaesthetic and gas and air. I did ask for the sedation several times, but they insisted I would be fine, which I was. I got to the hospital at 8.30am and got home about 2.30pm, a bit longer than I'd anticipated. The only concern I have is regarding sleeping, which I didn't ask about and they didn't mention. The port was put on my left side (opposite side to my cancer), which is the side I usually sleep on. I've looked online and it says sleep on back or opposite side to the port. I don't mind this while it's healing, but would rather go back to sleeping on the port side afterwards. Really not sure if this will be OK or not, so will have to try and find out. How are you feeling at the moment?

  • Hi Pippin 24, didn't get back until 6.30, my appointment was 3.30 but it was so busy catching up after the 2 Bank Holidays,  fingers crossed I'm feeling OK physically,  still struggling with trying to be positive but I'm trying,  glad all went well for you today xx

  • Oh gosh well done for doing it under local! Glad it went well in the end..sleeping wise I can firstly sleep on the side of my port (like you it’s the other side to my cancer side) but I have no probs lying on my port side..probably slept on other side for a night or so but it settled pretty quickly. Hope yours does too. Hope all goes well for your next cycle too…xx

  • Hi Greeny80, I was so nervous and kept asking for the sedation. They reassured me and said I would be fine. I was a bit of a wimp towards the end of procedure, just started crying, really not sure why. Think all the emotion of the last few weeks just came out. Was probably all the gas and air too, I was hogging it a bit! Thanks for the info about the sleeping, I was really concerned about it. I forgot to ask them and when I looked it up online, it said to sleep on opposite side. This wouldn't work for me as I like to sleep facing out of the bed. Xx

  • Hi Rufusblue, glad to hear you are feeling OK physically.  The struggle trying to stay positive is totally understandable, I think most people would be the same. Sorry I missed responding to your last post. Such a shame that you'll have to go further afield  to find a new hair clinic, hope you manage to find somewhere equally as good. Annoying you had issues with getting cert for work, but glad you got it sorted. Hope you had a lovely Easter. Xx