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?

  • Thank you, just on my way to the hospital now. As you say its my last EC, so one milestone to tick off. Hope you're still feeling ok. Xx

  • I'm a bit apprehensive about the docetaxel, but going to stay positive and hope I'll do OK on that too. I think I also start Herceptin injections at this time, which I'm also a bit concerned about. Hope you enjoy your new home. Xx

  • Offline in reply to Pippin24

    Hope all goes well today Pippin.   I like you am apprehensive about the docetaxel.  I've taken comfort in knowing what to expect with EC.  

    so everyone my spontaneous steak has continued.  We already have an adorable Goldendoodle Skye who is 3.  
    May the weekend we decided on a little puppy - her nephew - Storm.  Hubby gets him in a couple of weeks.  I will need to leave the care to hubby due to chemo and wear gloves to avoid nips and scratches but honestly so excited and looking forward to a life post chemo 

    my cousin has also gifted me an electric bike.  As you all know I have severe hip arthritis but I can cycle and the electric element will make it easier.  So happy to be able to factor exercise in to my days in the future 

    positivity is the best medicine by far 

    hope everyone is doing ok

    xxx 

  • Offline in reply to NGS

    Oh this is fab news on all accounts!! 

    ah a bouncing bundle of joy! Cute, what type of dog is it? That will be a nice distraction from Chemo for sure….and that’s amazing about the electric bike too. With the weather getting a bit warmer too it will be so lovely to be able to do some exercise outside. Brilliant that you bike with your hip. Oh this is a very happy message! Yay!

    For those worrying about Docetaxol - I know everyone will be different but everyone I know who has done EC followed by Docetaxol has said it’s so much easier! I think the main side effect is tiredness and also neuropathy but hopefully after only 3 rounds that would be so harsh..honestly everyone has said it almost felt like a relief after the EC!

    Im currently on TC and my body definitely prefers this to the EC! I was super tired and achy over the weekend so Fri/Sat we’re probably my worst days (having had chemo on Tuesday) my oncologist said those would be the worst and he was right…but all totally manageable and was fully functioning still and cooking dinner and walking etc..my mouth still has this horrid taste but I had that with EC too to maybe that’s the Cyclophosphamide? Who knows! But please, please don’t worry! 

    pippin - hope you’re doing ok today and that you’re nearly home if not already! Xx

  • Offline in reply to NGS

    Sorry just re-read that it’s a golden doodle!! We have a 3 year old black labradoodle here! Xx

  • Offline in reply to NGS

    Hi NGS, all was super quick today and I was home by 3pm. That's now all the EC finished, will start the docetaxel in May, plus Herceptin injections. The nurse did tell me that people who have side effects on EC are usually ok on docetaxel and vice versa. Not great for me (although I intend to prove them wrong), but good news for any of you having issues on the EC. How lovely that you're welcoming a new puppy into your family, will certainly be a nice distraction for you. Great that you've been gifted an electric bike, I think being able to get out and exercise will be good for you. Good luck with your treatment tomorrow, hope all goes well. Xx

  • Hi Greeny80, super quick today and was home by 3pm. Next treatment is on a Tuesday, due to Bank Holiday. I start the docetaxel and Herceptin next time, so will have to see how that goes. Nurse did say that people who have side effects on EC are often OK on docetaxel and vice versa. Not what I was hoping to hear, but great for anyone who has had issues on EC. She did say it is a totally different chemo and is stronger. My plan is to stay positive and have no side effects lol! I asked about cold therapy for hands and feet, but she didn't say if they think it makes any difference. She did say I can try if I want to, so will think about it. She did say if I get any sign of neuropathy to tell them straight away, as dosage can be changed. Not sure if I'd be keen on that, as would want the dosage I should be having. Black nail polish was mentioned to protect nails, but not sure if I should do this while using the polybalm. All these choices is mind boggling! Glad to hear you are now over your bad days and you are able to get out walking. Hopefully it will be all good days now until your next treatment. Xx

  • Hi Greeny.

    Sorry it's taken so long to reply.  I've had a bit of a rough week.  The neuropathy comes and goes, it's more of a numbness in my finger tips than pins needles, but it is definitely better than it was and it isn't impacting daily life. 

    I went to the hospital yesterday for my pre-op assessment - only to get a call as I was on my way to say the appointment had been cancelled because the nurse had called in sick!  Luckily I still had other appointments so it wasn't a wasted journey.  There was some concern over the weekend that they had changed their mind about lumpectomy v mastectomy as I got a random call asking me to go in to see my surgeon to discuss "options".  Needless to say I went down that rabbit hole of despair and worse case scenario.  As it turns out, he just wanted to discuss how much of my nipple to remove as part of surgery, as they still couldn't see any trace of cancer and therefore couldn't put a marker in place. Because of its location in the original scans, they want to take a "strip" from the top of the nipple down, so it was just to discuss that.  Honestly, I had the most stressful weekend thinking the worst!  He also confirmed the biopsy of the lymph nodes was normal practice for anyone who has breast surgery and he is confident nothing will be found as I was clear previous to treatment.  Oh the joy! 

    How did your last cycle go?  My eyelashes are starting to grow back.  Hoorah!  

  • Hi Pippin 

    I had neuropathy with Docetaxel and would definitely recommend following their advice about having the dose reduced if you start getting symptoms.  If it goes ignored and gets bad, sometimes it's irreversible, so it's not worth the risk.  They had to take me off Docetaxel completely because my neuropathy got so bad (I started dropping things) but luckily it seems to be getting better now, though I still have some numbness in my finger tips, but it's manageable. I was however extremely sensitive to the chemo treatment and I know it's quite rare, so I'm sure you will be fine (realised I sounded like a proper scaremongerer there!).  I got really bad nausea on EC but was fine on Docetaxel (other than the neuropathy) except for extreme tiredness.  But quite honestly, I think my body just hated the treatment.  It was worth it though as I got the cancer all clear a couple of weeks ago and now just waiting for a lumpectomy (scheduled for 24th) to remove a small amount of surrounding tissue to give clearance.  I will also have radiotherapy after surgery and continue immunotherapy for 6 months, but am hoping life will return to some form of normality once I have recovered from the surgery.  Apparently I can't walk the dog for 3 months due to the risk of her pulling! Lord knows how I'm going to do that - others will walk her for me but I will miss our little strolls out and bonding time. 

    Re nails, my nails have never been strong than they were while on chemo!  Every cloud lol. 

    Good luck with your next treatment.  I hope all goes well. x

  • Hi Carol, thanks for the info on the neuropathy, I will be sure to mention any symptoms straight away. I certainly don't want to risk any permanent damage. I have been considering cold therapy for hands and feet, but haven't made up my mind yet. Will do a bit more research into this. I did mention it at the hospital, but they didn't have much to say about it. I've been fine on the EC and hope this continues with the docetaxel, going to stay positive. So pleased you got the cancer all clear even before your surgery. I didn't realise chemo could get it all, so that's good to hear.  Shame that you can't take your dog out walking, when you enjoy it so much. Maybe you could go along for the walk, while someone else holds the lead. I've been enjoying my daily walks, just got back from a 2 1/2 mile walk with hubby, seems to give me more energy strangely. I have been using a product called polybalm on my nails, which I'm hoping is going to limit nail damage, will have to see how that goes. It's good to hear your nails were fine. Good luck with your surgery on the 24th, hope it all goes well. Xx