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
  • Hi NGS, I was thinking of you today. Hope everything went well with your treatment and that you're feeling OK. Xx

  • Morning everyone. 

    greeny hoping your continuing to feel brighter with every day.  Lovely that your parents are coming to stay 

    In terms of ovary removal I remember the genetics team telling me that removal before 45 added another preventive for breast cancer ( although maybe not successful in my case but they just be because the BRCA1 stacked the odds against me ) 

    pippin - how are you feeling ?   Glad yesterday went smoothly.  

    My treatment went well. Just a long day as had to waited several hours for my take home meds - poor planning by pharmacy at hospital 

    I had reduced dose at 75% and injections now in days 3/5/7/9. Also prescribed muscle relaxants to try and help with bone pain 

    feeling god so far.  Fingers crossed that continues

    i also had call from doctor to say CT results clear - no evidence of blood clot and no abnormality or cancer in chest / heart / lungs which has given me huge positive boost 

    so one more chemo to go   Then surgery 3-6 weeks after bone infusions every 6 months for at least 3 years and bone density scans  and letrazole for at least 10 years 

    I'm meeting genetics on 6 th June for next stage of  cascade testing for my family and I'll be asking about any other tests / trials    The treatment for BRCA1 is imminent in next 5-10 years which is encouraging for my children 

    Carol - lovely to hear your doing well   Good luck with next part of treatment    

    wishing everyone positivity for the days ahead 

    no baby as yet -   Midwife appointment today and likely being offered a sweep as 2 days overdue now   Watch this space 

    xxx 

  • How’s everyone feeling.  Wishing you all the best for treatment this week Greeny.  
    ive still got a horrible taste in my mouth and terrible heartburn. Also feeling incredibly tired again at moment.  
    I have one more week of my PICC line - it will be so lovely to have a proper shower 

    I had my meeting with the genetics team last Thursday which was very positive.  I am being considered for the vaccinations to prevent recurrence and potentially pancreatic preventative testing as well.  
    wishing you all well xx 

  • Hi NGS, sorry to hear you're still having taste issue's, so annoying. Mine seems to last for about 3 days, then goes back to normal. I feel quite tired today too, did have a busy weekend though. Went out for dinner with hubby on Friday evening, which I really enjoyed. We spent Saturday with my daughter, son-in-law and the grandkids. Went to their local fire station open day, which was great fun. Yesterday was a visit to my mum an dad, hubby did a few jobs for them, that needed doing. This morning I went for my covid jab, which caused me a little uncertainty. The pharmacist seemed reluctant to give it to me. First mentioned I wasn't the correct age. I told him it was because of being a cancer patient. He went off for about 1/2 hour to make phone calls. Then came back and was talking about my heart. I told him my heart is being monitored due to phesgo injections, but there was nothing wrong with it. I had to get in touch with chemo unit, who sent text to say I could have it. I ended up in there an hour, but eventually had it. Left feelling a little unsettled though and wondered if I should have left it. Hope you had a nice weekend and enjoy this week before your last treatment. You must be so happy that it will be your last one. Pleased to hear that your genetics meeting was positive, that is good news. Xx

    Good luck for tomorrow Greeny80, hope all goes smoothly. Xx

  • Hey!!

    oh that’s amazing you have your pic line removed in a week! Yay! So nice to be coming to the end of  Chemo! Amazing!! Sorry taste is still off, mine has been pretty bad during chemo, usually it’s bad for about 10/14 days and I still don’t think it’s quite right..I went out for dinner on Friday night to this amazing 8 course taster menu but my husband said one of the courses was really salty and to be it tasted a bit bland!..think my taste buds just seem to dampen any flavour. Hopefully they’ll return after chemo! Sorry about the heartburn too - can you take anything for that??

    Glad you had a good meeting last week though with the genetics team. Keep us posted on the vaccine, I didn’t know such a thing existed for prevention or recurrence. Amazing!


    gearing myself up for tomorrow! But after that I’ll only have one more to go!! Whoop!! Have an appt with radiologist on Thursday so will hopefully find out next steps and timings etc after that!

    Hope the last round goes ok for you!! Just think last one!!!!! Hurrah! Xx

    take care and have a good eve!!  

  • Hey Pippin,

    im not surprised you’re tired! Sounds like a lovey but busy weekend! But so nice doing normal things isn’t it! Going out on Friday was so nice and my parents were staying with us this weekend so that was lovely too! I actually went to London last week too to see my best friend which was really fun and nice to have a change of scene! Took my dog on the train for a little outing!!

    Have been trying to be super productive today before Chemo tomorrow getting all the admin, laundry, errands done before next week when I’ll be feeling below par!! But after tomorrow I’ll only one more to go!..yay!!! I went to get my bloods done today so hopefully tomorrow won’t be such a long day! 

    Sorry you had to wait an hour to get your Covid Jab but glad you got it sorted…Hope you’re not feeling any side effects from it. 

    when’s your next one Pippin? Do you have two more? 

    have a good evening and hope you can have a few restful days after your busy weekend! Xx

  • Hi Greeny80, sounds like you have been pretty busy too, lovely that you got to spend the weekend with your parents. I do exactly the same as you, loads of cleaning on the day before treatment, so I can rest afterwards. Amazing that after tomorrow, you'll only have one more treatment to go. I'll be in the same position next week, it's fanastic that we are nearly through this. I'm feeling fine so far after the covid jab, hopefully that will continue. Will be thinking of you tomorrow. Xx

  • Morning all

    That's great news you're all coming to the end of chemo.  It's such an amazing feeling when you get there.  A massive relief washes over you. 

    Sorry  that your taste has been off.  Mine was bad with the docetaxel but ok with EC.  Everyone sounds like they're keeping up with busy lives which is great! Good luck with your last treatment @Greeny80.  That's amazing. 

    I have 4 more immunotherapy sessions to go.  So far I've been feeling ok with them.  Bit of stomach cramping, but nothing a little lie down and some paracetamol can't handle.  

    I'm heading away this weekend, the first time I've ventured away from home since all this started.  Am a little apprehensive and wondering if I can have a drink! Don't want to get hammered, but would be nice to have a glass of wine with dinner or a cheeky gin lol. 

    I have my radiotherapy consultation next Wednesday (19th).  Then it will apparently be 3-4 weeks after that that radiotherapy will begin.  I'm expecting 15 days of radiotherapy, but my consultant said it would be anything between 5 and 15 days.  I'm pretty sure it won't be 5, I'm just not that lucky lol. 

     , glad you were ok after your Covid jab.  Thankfully I was ok after mine too.  Sounds like we're all on the up and up!  Long may it continue :) 

    Carolxx

  • Hi Carol, glad things are manageable with the immunotherapy injections. What is the reason for the immunotherapy, if you don't mind me asking? I've recently been told I'll be starting bone infusions, just wondered if they're going to drop any more surprises on me! Hope all goes well with your radiotherapy appointment, it's good to know what the plan will be. I'm staying out on Saturday night, first time since starting treatment too. Just at my brother's though, he's hosting a party for my dad's 90th birthday. Have a lovely weekend away, I'm  sure it will do you good. Xx

  • Hi    Immunotherapy is given by infusion, same as chemo, but it's much gentler on the body and shouldn't cause hair loss etc.  Immunotherapy is given to help prevent the cancer returning or spreading.  I've been having it alongside chemo all the time, but it's continuing on its own for 6 treatments (2 down, 4 to go!). I feel like I've moved into prevention mode now rather than treatment, if that makes sense.  

    Goodness, bone infusions doesn't sound pleasant!  Are they injections or cannula?  I wonder if it's a similar treatment to the ibandronic acid tablets I will be taking after radiotherapy (another prevention medication!).  Like you, they have drip fed me treatment info.  At first it was just chemo and surgery, then they added immunotherapy, then it was radiotherapy and now ibandronic acid.  You start to wonder what else is likely to be added!  I can only assume they drip feed you so as not to overwhelm you at the beginning, when you've got enough to deal with at initial diagnosis. I'm quite worried about the ibandronic acid as the possible side effects sound horrendous.  But I guess if I really can't manage them, then they will either have an alternative option or reduced dosage or I just stop taking them.  I just want my life back!  I so need a sunshine holiday lol. 

    I'm off to Kings Lynn for the weekend which is just over 2 hours away.  I think the furthest I've travelled since diagnosis last year is 30 mins!  There are around 7 of us going, so I'll be in good company and they all know what I'm going through so I'm sure I will be taken good care of. 

    That's great you're heading to your brother's.  Hope your dad enjoys his 90th too.  I'm sure a change of scenery will do us both good.  Enjoy! xx

  • I started phesgo injections at the same time I started the docetaxel. This is a targeted treatment because I'm HER2 positive. I suppose depending on the type of cancer, we all have slightly different treatments. I know I will be starting hormone blockers at some point and be on them for years. I think this is to help stop any recurrence, but they too have side effects to deal with. The bone infusions are every 6 months, for 3 years, it's called zoledronic acid. I have to visit the dentist before treatment starts and have any work that needs doing. You can't have any extractions while on it as jaw won't heal, as far as I know. Apparently a rare side effect is necrosis of the jaw, which sounds pretty scary! I think your right about drip feeding you information, so it's not so overwhelming.

    I'm sure you'll be well looked after while you're away, have fun. Xx

  • Hi Greeny80, was thinking about you today. Hope all went smoothly with your treatment and that you're feeling OK. Only one more to go yay! Xx

Reply Children
  • Ah thank you Pippin!

    I’m doing ok! Yesterday was a lot quicker as I had my bloods done the day before so from that side of things yesterday was much better. Feeling pretty nauseous but trying to stay on top of my meds!

    we got an email yesterday saying our new sofas we had ordered were arriving first thing this morning which meant we had to move the old sofa out of one room and upstairs into a spare bedroom (the sofa is a sofa/sofa bed) so using that temporarily as a guest bedroom bed..so a few hours after I got home from Chemo my husband and i were lugging a huge sofa up the stairs!!!!! Not quite what I wanted to be doing and never sweated so much!!!!..but we got it done!!

    had an ok sleep, woke up at 5am feeling sick but took my meds. Managed to get out for a 6km walk this morning but this afternoon have just woken up from a 2 hour nap!!!! Feeling queasy and a bit out of sorts but ok! 

    my kids are in a residential with school next week so need to sort out all their kit etc this week. Also have a radiologist appt tomorrow so will hopefully know more about next steps which will be good! Can sense the end of Chemo! One more!!!!!!

    my oncologist yesterday said I would then be on monthly zoladex injections, letrozole and abemaciclib. Slightly worry about side effects but will just have to wait and see. I was chatting to a friend of mine who is having a hard time on that cocktail so I’m feeling apprehensive!…BUT just need to get through Chemo, then radio and take one step at a time and keep positive that side effects will all be ok!!!! Fingers crossed!!

    How are you doing? 

  • Hi Greeny80, pleased to hear it wasn't such a long day for you yesterday, shame about the nausea though. I'm sure you could have done without moving furniture about, when you got home. It's good that you felt well enough to go for a walk, I find walking really helps the mindset. Hope all goes well with your appointment tomorrow, always good to know the next steps moving forward.I had an echocardiogram today to check my heart, due to being on the phesgo injections. They told me that there is no change  which is really good news.Do you know what this new cocktail of drugs is for? Try to remember that people react differently to all these meds, so you won't necessarily have a hard time. Hope you have a good week and don't feel too unwell. Xx