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

  • I fear my life is about to become all hot flushes and other menopause symptons!! Just have to try and remind myself that it’s all for the greater good and preventing reoccurrence…which is the most important thing.

    honestly you’ll be totally fine. I was sedated and it was amazing! I think I drifted off to sleep and then woke up just at the end…felt really relaxed and pretty peaceful after! The sedation was good! I wasn’t very good with general anaesthetic as felt very nauseous after that but the sedation was good!!! Will be thinking of you but it will be over before you know it. 

    Hope you’ve had a lovely Easter. X

  • I feel much better about the port after hearing about your experience, have decided to chill out about it now. I suppose the menopause systems are a small price to pay, in the grand scheme of things. Sommething we'll just have to try and get used to! Had a very chilled and quiet Easter, as isolating until day 10. Hopefully will be catching up with the kids and grandkids next Friday, can't wait. Also hoping to take my elderly parents out for a nice lunch. This has been so hard for them, as they're used to seeing more of me. Luckily my mum is not too bad with a phone, so we facetime every day. Will let you know how it goes on Wednesday, take care. Xx

  • Hope everyone has enjoyed some time over Easter.  I will be so pleased once the injections end.  I really struggle with them. Whilst stronger pain meds have helped this time I just feel hung over the whole time and ache all over.  I’ve slept relentlessly and have zero energy. I’m also hyper sensitive right now and my skin feels like it’s crawling.  
    Also just wondered how your doing with eating / weight control. 

    it’s such a minefield of symptoms / unknowns all the time. 
    good luck for Wednesday Pippin.  I agree with others it will make future treatments so very much easier 

    hoping everyone is getting on ok 

    xxx 

  • Hi NGS, so sorry to hear that you stlll struggle with the injections, this must be so difficult for you  I do get a little tired at times  and generally have a nap at some time during the evening. The biggest issue for me is the hot flushes, which do disturb my sleep. I managed to weigh in at slimming world the week before my 2nd chemo (target member for 8 years now), as I love going to my group when I can. I find I do put on weight the week after my chemo, which is annoying. I think this is because of having to eat before some tablets and after others. I end up eating when I'm not even hungry. Once that week is over I go back to my normal eating and it sorts itself out  I'm a bit worried about what will happen when I go onto the docetaxel, as I think the meds increase. Thank you for your best wishes regarding my port tomorrow, will just be glad to get it done now. I really hope you start to feel better once you finish your injections. Xxx

  • Hi Greeny80, just wanted to ask you about what clothing to wear after port fitting. Was it difficult to raise your arms to put on clothing or put on a bra?

  • Morning! 
    I don’t remember wearing anything different after the port…probably just slightly looser clothing but nothing that I remember.. I would suggest a soft bra as the strap can sometimes dig in depending on where they actually insert it..(mine is totally fine now but just for a few days) the only other slight pain/uncomfort I got was when driving as the seatbelt was digging in/pressing on the port slightly so I used to have a nice scarf which I used to pad that area a bit…but it didn’t last long, a few days/a week max. I literally don’t notice it at all now…Arm/neck felt a little uncomfortable for a day but it was never sore. Arm movement etc was fine. 

    Hope it’s all fine for you too! Will be thinking of you tomorrow..I know you’ll be glad once it’s over and I promise it will be over in a flash! Good luck for the next round too…

    im starting docetaxol next Tuesday (along with cyclophosphamide) and I have to take double steroids the day before, day of and day after and then who knows what else after! I’ll let you know!! 

    Hope the bowel movements are all ok! I’ve been eating a lot of apricots!..but now all seems to be good if not a little too far the other way!!! Always something!!!!!!

    Take care and good luck tomorrow! 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 

Reply
  • 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 

Children
  • 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