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?

  • Hi everyone!

    Glad you all seem to be doing well!

     Fab news you are now cancer free...wishing you a super speedy recovery from your double masectomy,that must have been a long op..hope you get the drains removed on the 1st so that you can then concentrate on recovery. Hope the letrozole goes ok too and no horrid side effects to that.

       Fingers crossed you get to go on your holiday before your op. Keep us posted, I"m sorry you're feeling anxious about it... it will all go amazingly and you'll be out the other side in full recovery mode before you know it. Are you having radiotherapy? I'm assuming not if they're doing a masectomy? Once the op is done you'll be able to concentrate on getting back to your new normal and hopefully cracking on with living life to the max! (in between more jabs, pills and appts which i guess is our new normal!!)

      Hope your first radiotherapy session went ok. I had my first one too! 1 down 14 to go! It was actually totally fine although lying naked in a freezing room with your boobs out is a little exposing but I have to say i'm pretty used to getting my boobs out these days!!!!!!....as i'm sure we all are! How many sessions have you got carol? Hoping side effects wiill be minimal and that radio will be a walk in the park compared to chemo!

    I actually  just got back from Barcelona. We popped over there inbetween end of chemo and start of radio and obviously  i got covid whilst out there!...felt pretty horrendous which was a shame, chemo clearly wasn't enough, my body needed me to have covid too!!!!... but the kids had a fab time and Barcelona is an awesome city...i had my zoladex injection (which shuts my ovaries down) a week before and i thought my symptons were side effects of that so just cracked on with it but actually i think it was just covid which i'm happy about as dont' want to be feeling like that every month that's for sure!! I start my anastrozole on Thursday....slighty worried about side effects but hopefully they will be minimal...

    Anyway, lovely to hear from you all, sounds like you're all doing amazingly.   rest up post surgery, hope you're feeling ok mentally and physically and that you have a super speedy recovery.

    Take care ladies xx

  • Hi Greeny80, sorry to hear that you got covid while away. I hope you still managed to enjoy your holiday. I had heard that there is a lot of covid about, does make me worry about going away. Really don't need any extra delays with surgery. Not sure about radiotherapy yet, the surgeon said it will depend if there are any active cancer cells found in the tissue that's removed. Next step is to see the plastic surgeon. Having my next phesgo injection tomorrow. Hubby will be doing it as he's training, so I can have them at home. Also have dentist tomorrow, to get the ok to start zoledronic acid. What is the anastrozole treatment for and how long to you have to have it for? Glad to hear your first radiotherapy went well, hopefully you'll sail through it.  Xx

  • Hi all

    First radiotherapy went well, except for the fire alarm going off just as I got into position!  It was so loud my ears felt like they were going to bleed.  No evacuation required as they said because it was intermittent, it was elsewhere in the hospital!!  But the poor radiotherapists had to shout at me through the intercom so I could hear the instructions of when to hold breath and breathe etc.  It could only happen to me lol.  I thought there's no way I'm evacuating with my boobs out and was definitely going to dress first!!  I have 9 sessions in total, so 1 down, 8 to go.  Second one is this afternoon. 

    @Greeny80 so sorry to hear you were unwell while you were away.  Doesn't sound like it interfered too much though!  Glad you managed to get away just the same. Good luck with your next radio session.

    xx

  • Hi Carol, good to hear that you 1st radiotherapy went well. Unfortunate that fire alarm was going off, it must have difficult listening to hear the instructions. Especially annoying as it happened on your first session. At least you didn't have to evacuate, that would have been awkward! Good luck with the rest of the treatments. Xx

  • Offline in reply to Pippin24

    I really do hope you get to enjoy your holiday beforehand.  Once you have surgery you really are limited.  Most I’m allowed to do is lift my arms to my shoulder and it’s hard with weight of bags holding all the pumps around your neck. 
    I went back to hospital yesterday as support bra was restricting my breathing.  That’s sorted a bit better now 

    my situation may be slightly different due to BRCA1 gene and grade 3 cancer  hence my timeframe   That was also why I’ve had enhancer implants   Surgeon has had to scrape tissue as close to skin and nipple to ensure nothing left   
    enhancers mean they are not inflated yet to ensure best chance to avoid skin necrosis and nipple necrosis   
    they will gradually be inflated as I heal and then will have surgery most likely to change for silicone in due course  

    the genetic make up was why I’m not using stomach tissue   I also had hysterectomy and ovaries removed 12 years ago and have a lot of scar tissue 

    right now this surgery has been hardest in terms of recovery   But I think it’s due to all drains etc   Be prepared for needing a lot of help and for resting loads 

    I can’t even hold my granddaughter   !! I can just about manage to hold cup of drink 

    onwards and upwards though   - it can only get better and it’s not like chemo where you know your crash gain with another round   

    hope everyone else doing well - recovering from COVID and post radiotherapy 

    xx

  • Offline in reply to Carol1964

    Hi Carol 

    how was the radiotherapy. Hoping not as grueling as chemo 

    I think worse is likely tiredness - but I know what you mean about wearing the bra especially in this heat 

    hope rest of treatment goes well and the hair keeps growing 

    xx 

  • Offline in reply to NGS

    Hi NGS,  it sounds like you are going through a difficult time, it must be hard with movement being so restricted. It's the recovery period that concerns me the most, not so much the actual surgery. I really don't like sitting around when things need doing around the house. It would be lovely to go away for a rest, but I'm concerned about the risk of covid, I really don't want a delay in surgery when I get back. I'm not so worried about the delay in surgery before the holiday, as apparently the phesgo helps prevent the cancer growing. I too had a hysterectomy some years ago, but breast surgeon said they'll go back in through that scar and extend it. This will need to be confirmed with the plastic surgeon,  so fingers crossed it will be OK. It sounds like you are doing really well and are staying positive. If you think of any tips about the  stay in hospital  please let me know. Hope all goes well on the 1st, having your drains removed. I'm sure you will be much more comfortable once this has been done. Xx

  • Offline in reply to Pippin24

    So I had one drain removed each side and the PICU pumps disconnected.   I go back Monday hopefully for the remaining drains to be removed. 
    things are feeling very tight currently which is so uncomfortable 

    I see the surgeon next Thursday who will remove and change dressings.  I think it will be premature to inflate the enhancers anymore at this stage so that may commence the week after.  It’s a long process 

    the hospital gave me two heart shaped pillows one for under each arm - they had a v shaped pillow I have for sleeping are invaluable.  You have to sleep on your back but at an angle so you keep implants in place 

    I’ve accepted I simply cannot do anything.  I can’t hold my granddaughter even. 
    im ignoring anything  in the house and just tell myself there will be plenty of time to clean in the future 

    my husband is really good.  He’s cooking washing etc but like you I don’t like sitting around if things need doing.  However my body tells otherwise so I have zero choice 

    make sure you have strong pain meds - I have oral morph prescribed thankfully 

    it’s not like chemo though.  With every day it improves. And stays that way thankfully 

    xxx

  • Offline in reply to NGS

    Hi NGS, glad to hear you have had a couple of drains removed and pumps disconnected. Hopefully, the others will be gone on Monday and you will be more comfortable. I was told my drains would be removed before leaving the hospital. Most people that have posted on here say they come home with the drains, so will have to wait and see. It sounds like you are going through quite a difficult time at the moment, I'm dreading it to be honest. I'm still waiting to see the plastic surgeon and have mri on my stomach, so still not sure if we'll get away. Would really just like to know a time frame now. I really wish you a speedy recovery. Xx

  • I had a PICC line when I was on chemo. It saves a lot cannulas and is safer as there is no chance of leakage of the chemo in big doses.

    Would recommend it over cannulas. Don't know about ports.