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?

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  • 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

  • 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

  • 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

  • Ah sorry the injections have been so painful..yes definitely worth chatting to your BCN about whether you can do fewer injections…I’d definitely ask. Hope all the other side effects have been manageable.

    at the moment no sign of my hair falling out but I’m only just week 2..I did only have half a dose though so it may last a little longer?? Did you get any signs before it started falling out, like itchy scalp?? Or did you just wake up one morning?? I’m intrigued! My son said he wanted my hair to fall out as he wanted to see what I would look like!!!! I just can’t imagine how I’m going to feel when it starts to thin?! It’s super fine already so doesn’t stand a chance! Really hope you’re ok. It’s  a big thing losing your hair in the i think because it has such strong association with cancer..and I guess makes it feel a bit more real? Sending you virtual hugs. Good you have thick hair as maybe it will just thin rather than all fall out???

    interesting about the Tamoxifen too..just goes to show there’s not certainty about whether it’s going to come back…all we can do is try and keep living our lives to the full….and hope! There is always hope! 

    xx

  • Hey Pippin, 

    Sorry just read your last message: I spoke to my team about the cold mitts and they didn’t really say much. They said some women had tried it so they wouldn’t be surprised if I turned up with them but they said there wasn’t enough evidence either way?! the lady I spoke to didn’t seem very knowledgable if I’m honest…. I’m torn as to what to do but I’m also willing to try anything so may well invest and hope it helps…neuropathy scares me. I don’t want to be in pain in my feet so that I can’t run or exercise..so may give it go..I guess it can’t hurt? Nothing to say it has a negative impact? 

Reply
  • Hey Pippin, 

    Sorry just read your last message: I spoke to my team about the cold mitts and they didn’t really say much. They said some women had tried it so they wouldn’t be surprised if I turned up with them but they said there wasn’t enough evidence either way?! the lady I spoke to didn’t seem very knowledgable if I’m honest…. I’m torn as to what to do but I’m also willing to try anything so may well invest and hope it helps…neuropathy scares me. I don’t want to be in pain in my feet so that I can’t run or exercise..so may give it go..I guess it can’t hurt? Nothing to say it has a negative impact? 

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