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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  • Hi, everyone, hope you've all had a good day. I had a review on Friday and have been given the ok for next treatment on Tuesday. Have been told I will need to have another echocardiogram before my 6th cycle. Also that from August I will be starting bone infusions every 6 months, this was news to me. I apparently need to go to the dentist for a check up before they will start the infusions, to make sure that any dental work is completed first. I will now be under the chemo unit until February 2027, which came as a bit of a surprise. I've also been contacted about a covid jab as I'm now eligible, which I've now booked. 

    Greeny80, hope you are feeling OK after your treatment on Tuesday.

    NGS, how are you feeling now? Also, how did things go with the oncologist on Friday?

    Wishing everyone a good Bank Holiday weekend. Xx

  • Hi everyone 

    I’m doing much better finally.  Just in time for round 5 on Tuesday 

    really sorry to hear your treatment was more difficult Greeny - how are you feeling now ? 

    Pippin - the bone infusion is what they gave me in addition to my first round of docetaxel 

    I am to have these every 6 months for at least 3 years. I was told it puts down treatment in bones to prevent cancer cells taking hold.  The side effects can be severe bone pain.  ( and in true fashion I had this ) it’s a very quick infusion 

    I had to have dental checks at the hospital and was told to ensure my dentist the sees me every 6 months   It can cause jaw difficulties and extractions should not take place whilst on treatment   Thankfully I have really good teeth  

    I had my meeting with the consultant Friday which went well.  I had the option to end chemo but if the cancer returned I know I would regret such a decision. As such they are reducing my dose to 75% and prescribing strong pain meds and medication for sickness and diarrohea.  Also and I am over the moon halving my injections to boost my white blood cells.  This is the best news as they alone cause chronic bone pain for me.   I will have 4 injections alternate days instead of 7

    I will be having a bone density test at some point in coming 3 years to monitor bones whilst on the bone infusions. 
    so just two more chemo to go.  3 and a bit weeks and it will be done. 

    I did get some good news. As I will now be having a double mastectomy to remove all breast tissue ( 3-6 weeks after chemo) I may not need to have radiotherapy.  
    this was great news and the end is in sight I hope. I will have letreazole for minimum of 10 years. 

    I do have an appointment on 6 th June with the genetics team and will be asking about other testing etc for pancreas / lymphatic system  to ensure I am fully covered.  

    hope you are all enjoying the bank holiday 

    we are excitedly waiting arrival of granddaughter  due date is 27 th   
    xxx 

  • Hi NGS, I just realised I didn't mention your amazing upcoming  news, hopefully you won't have too long to wait. You must be so excited waiting for the arrival of a beautiful granddaughter. Enjoy every minute, they are so precious. Xx

  • Morning ladies 

    good luck today Pippin.  Hope treatment goes well for you 

    I’m a little apprehensive but hope all the adjustments pay off this time 

    my positive thought for you has been that 3 weeks today will be my last chemo.  Wow that sounds good 

    Greeny - sorry to hear your having more symptoms. But good to hear you are finding ways to manage.   I like you find the weight gain frustrating.  I think I had it in my head I would lose weight on chemo.  Oh well another thing to tackle after all of this 

    I had my ovaries removed 12 years ago - best decision ever. 
    im not sure what stage of life you are at but with little children I’m guessing a bit younger than me.  I was 41 when I had the op and whilst it sent me into immediate menopause I now have none of the menopausal symptoms my friends experience at this stage of life. 
    the only difficulty for me has been the arthritis in my hips but that could me a combination of surgery and taking tamoxifen for 5 years.   I have never taken HRT due to my high cancer risk. 

    positive vibes everyone on the sunny Tuesday morning.  
    oh he no baby yet - due date was yesterday 

    xxx 

  • Hi NGS, good luck with everything today, fingers crossed all will be well now changes are in place. Treatment five for me today, with two more to go. Last treatment for me is 9th July, which happens to be our 41st wedding anniversary. 

    I also thought I would lose weight during chemo, but it seems to be the opposite. I seem to get hungry all the time when on the steroids, not sure if it's in my head and just an excuse to snack. 

    I slept better last night after taking the double dose steroids. I explained the problem l had last time, during my telephone review. It was suggested I take them earlier, so I now take first dose at 7am and second dose at 12 o'clock. This really seemed to help, which is a relief. 

    Keep us updated on any baby news

    Greeny80, hope you are starting to feel better, I know you found this cycle more difficult. Have you tried asking your care team about dentist situation? They may be able to offer you some advice on the situation and perhaps might know who are taking patients. 

    To everyone else I hope you are all OK and doing well. Xx

  • Morning ladies!!

    Good luck today Pippin - amazing after this only 2 more to go! YAY! Hope you get on ok this round. Sending all the positive vibes your way.....and also congrats on nearly 41 years! Amazing!!! My husband and I will be 15 this year in September...hope we are just as happy at 41 years!!

    Yes i'm definitley snacking more and exercising less so hoping once the chemo is done and i start to feel better i can concentrate on feeling strong, healthy , fit and well again. My taste and mouth and just feeling a bit icky is just weirdly making me want to eat?? I thought it would be the other way around as everythig tastes weird but sadly not the case...but i'm trying not to worry about that too much although i'd be lying if i said it wasn't getting me down at times but i just have to put that to the back of my head at least until i'm finished chemo.... then we'll see. Although am slightly worried about the tamoxifen/AI's/Jabs etc making weight loss harder but guess we'll cross that bridge at a later date! 

    Definitely starting to feel better. I had my last jab yesterday so bones were a little sore, didn't have the best sleep and have woken up with a bit of a stuffy nose etc but i think i had that last time for a day as well so might just be a weird side effect which hopefully won't stay around too long...THEN i can enjoy 2 weeks of feeling good!! We hope!!!!! Next one on the 11th June...but my parents are actually coming to stay for a couple of nights next week and coming to see my kids sports day too so that will be lovely! My kids are 13 and 10...oh and i think NGS asked how old i am, i turned 44 in March I had my diagnosis in December so was 43. They have talked about ovary removal but when first suggested they said after the 10 years of hormone drugs etc? Need to chat to my oncologist again...I'm all up for taking them out if it helps and i know i'm lucky that i've had my kids etc...i know many aren't as lucky.

    Keep us posted on happy baby news! Ah so exciting! NGS so glad you'll be done so soon too! 3 weeks to go, that's VERY exciting!!!!!! So have you got a cycle today too? Hope the new dose works its magic and no complications or additional hospital visits this time. 

    Pippin let us know how you go today but hope it's all manageable and that you still get out for your walks!...talking of which i'm just off to take the dog out now before the rain!....so will touch base again later! 

    Lots of love ladies!

    xx

  • Good morning all. I hope you're all well.  

    Good luck today  .  I envy you a good night's sleep.  I can't remember the last time I had one of those lol. And congratulations on 41 year anniversary, that's amazing!

    My surgery site is healing well and I'm feeling really good.  I'll make the most of that feeling as I restart immunotherapy on the 6th June.  I have 5 sessions of immunotherapy to get through (including the one next week).  I am also awaiting a referral for radiotherapy.  I saw my consultant on Friday and he wants me to start taking Ibantronic Acid once I've had a dental check-up (also, reading the radiotherapy pamphlet, I might wait until that's over too so I can manage and monitor any side effects).  You are all very wise ladies, so may already know, but Ibantronic Acid is usually prescribed for osteoporosis, but they have discovered that it also works well to prevent breast cancer returning or spreading to the bones.  The side effects sound a bit daunting, but am hoping that I'll be ok, despite being a side effect magnet!  I guess worse case scenario, I stop taking them and take my chances ...  Have any of you been taking these? 

      so glad they reduced your dose.  Has it helped at all? That was an option they gave me before stopping docetaxel altogether.  I think I've been an oncologist nightmare so far lol. 

    I do have a small seroma under my left arm, but the surgeon doesn't seem concerned.  Just need to keep up with the exercises (which on writing this, I've realised I forgot to do this morning!) and he is confident it will disburse and be absorbed by the body naturally. 

    Ok, I'm off to do those exercises before I forget!! 

    Love to all.  

    Carol xx

  • Hi Greeny80, all went really smoothly today, they accessed my port first time. Also had the phesgo injection which was fine too. Got to the hospital at 12.30pm and was home by 3.20pm, quickest so far. Now have my appointment for echocardiogram on the 12th of June, so another appointment to add to the list.

    A lovely girl of 14 years old came around at the hospital with her mum who is a cancer patient, to give out free goody bags to cancer patients. Her aunt who previously had cancer was given one during her treatment and it gave her a real boost. So this young girl decided to make these bags up herself, with donated products and bring them round the chemo unit. Lot of lovely items in the bag, including refillable water bottle, puzzle book and pen, hand cream, mouthwash, aloe vera gel, socks. Such a lovely thing to do and was so nice to receive. 

    Pleased to hear that you're starting to feel better and that you can enjoy the time before your next treatment. How long does the taste thing last for you? Mine seemed to only be for about 3 days last time. I'm hoping that's all it will be this time. How lovely that your parents are coming for a visit.  I'm sure your children are delighted to have their grandparents coming to watch their sports day. It's good to hear that they're thinking ahead about ovary removal, even if it is a long way off. It gives you plenty of time to think about it. I too am going to be on hormone blockers long term and bone infusions for 3 years. I wonder too if these will have an effect on my weight, will just have to wait and see. Congratulations to you too on your 15th anniversary this year, that is wonderful. Xx

  • Hi Carol, all went well at the hospital today, appointment was 12.30pm and I was home by 3.20pm, quickest so far. Got given a lovely free goody bag from a teenage girl, who makes them up from donated items. It is such a lovely thing to do and was so nice to receive. 

    It's good to hear that you healing well since your surgery and that you are feeling good. I will be starting bone infusions in August, which was a surprise as hadn't been informed of this before. They said it would be Zoledronic acid, so not sure if this is similar to what you are having. I've also been told to visit the dentist prior to treatment starting. Nothing has been said to me about immunotherapy though. Do you know why you need to have this? Did they give you any idea how long it will be before you start the radiotherapy? Hopefully your sseroma under your arm will disperse on it's own  like they said. Just keep going with those exercises  xx

  • Hey Pippin,

    Ah funnily enough was just thinking about you!...so glad all went well today and that it was super speedy! Amazing....and what's also amazing is this young girl doing incredible things for cancer patients. What a lovely human being...such a gorgeous thing to do and i bet gave you all such a boost. Love hearing stories like this, so hearthwarming and makes you realise how much love and good there is in the world..especially when the news can be heavy. So yes a very welcome lovely thing to read.

    So glad it went well and really hope minimal side effects. My taste is still very off - it's coming back at bit but we're on day 8 now...it never fully comes back but it definitley lifts a little.

    Glad you've got a date for the echo cardiogram too.

    Yes it will be lovely for my kids and for my parents to be there for sports day. It will spur them on i'm sure! Hope you continue to feel good! Have a lovely, relaxing evening and will touch base again soon...but yay to ticking off another one!!!!

    xx

  • Hi Pippin

    Oh well done on a short treatment session!  Mine always last at least 2 hours lol.  And the goody bag sounds lovely.

    It sounds like Zoledronic acid is similar to the Ibandronic Acid in that it does a similar thing, but yours is infused and mine is in tablet form.  I'm a bit like you, each time I see my consultant, another form of treatment is added to the list.  It's like they like to drip feed you information rather than give you everything up front!  Or it may be that they don't know up front.  I guess we just have to trust them. 

    I have been having immunotherapy throughout my treatment.  It was given alongside chemotherapy every 2nd session (ie every 6 weeks).  So it's just a continuation really.  It's to help boost my immune system and help prevent the return of the cancer. 

    Don't know how long it will be before I start radiotherapy, but I don't imagine it will be long.  If they're doing a referral it normally takes a week or so for that to come through.  I've read in the pamphlets that they tattoo the area first with 3 small dots, so am guessing that's a separate appointment as they will need to wait for that to heal before starting treatment.  It feels never ending at the moment. 

    Covid jab today.  Woohoo lol.  Bit nervous about it if I'm honest, as I've not had anything like that since I started treatment.  I had to get all my covid and flu jabs done before I started last year. 

    Is that you done now for another 3 weeks? 

    Carol xx

  • Hi Carol, my hubby said the same as you about drip feeding the information, so it's not so overwhelming to hear at the start. Hopefully you won't have too long to wait for radiotherapy, then that will be another thing to tick off. Does sometimes seem never ending with all the appointments doesn't it? I have my covid jab on the 10th of June and an echocardiogram on the 12th of June. Next treatment in three weeks on the 18th of June. I hope you are feeling well at the moment, take care. Xx

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  • Hi Carol, my hubby said the same as you about drip feeding the information, so it's not so overwhelming to hear at the start. Hopefully you won't have too long to wait for radiotherapy, then that will be another thing to tick off. Does sometimes seem never ending with all the appointments doesn't it? I have my covid jab on the 10th of June and an echocardiogram on the 12th of June. Next treatment in three weeks on the 18th of June. I hope you are feeling well at the moment, take care. Xx

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