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?

  • Offline in reply to Greeny80

    Ah ladies this chat is so invaluable.  Pippin absolutely we will be here to see you through the next stage and surgery.  I’m pleased you have a date to work towards.   I’m also certain the doctors are confident there will be no risk with the dates they are working to.   My urgency was due to BRCA1 gene and high risk of cancer in healthy breast that’s why they advised surgery within 6 weeks of chemo ending.  I’m not on any other medication just yet.  Only bone infusions 6 monthly.  Letrazole will start in few weeks time. 

    I’ve managed a shower today.  Husband has the applied more iodine strips to scars - wow they are big cuts all the way under each breast and my right side is up under arm as well. Made me think why would people do this for just cosmetic reasons   

    xxx

  • Offline in reply to NGS

    Thanks NGS, good to hear that you'll be here to chat to when I'm going through surgery. I'm sure I'll have lots of questions nearer the time. You are absolutely right that the Dr's are confident with timings, or they would insist on it being done sooner. I feel calmer about everything today. Great that you're getting a break from medication at the moment, that must be a relief. Well done for managing the shower today, I'm having to sit in the shower with my foot hanging out. What would we do without our hubby's taking care of us? Hopefully your cuts will heal quickly, but I agree and can't understand why people would choose to have this done for cosmetic reasons. Have a good week and get plenty of rest. Xx

  • Morning all

    Sorry for radio silence, work ramped up a bit last week and then after radiotherapy I was just zonked (more from the drive home than the treatment!).  

    Goodness  , you have been in the wars! But so glad you are managing to get on your holiday before surgery.  It'll be just the boost you need.

     how's the radiotherapy going?  Do you have many left (sorry, I've lost count!). 

      Glad you've had two drains removed.  I can't even begin to imagine how uncomfortable they were/are. 

    Radiotherapy for me finished on Thursday.  So far so good, though apparently the treatment keeps working for 2-3 weeks after actual treatment stops, so I'm still keeping an eye out for soreness etc and moisturising twice daily.  My left areolae and nipple has turned a darker shade (like it's got a suntan) but doesn't hurt so I'm going to assume this is an affect of radiotherapy!  If it gets worse or looks more strange over the next few days, I'll give the team a call just to check.  Continuing treatment is just 3 more immunotherapy (every 6 weeks - next one is on the 29th August) and starting the Ibandronic Acid tablets which I am very anxious about.  I am seeing my consultant on the 27th so I will raise my concerns and discuss the possibility of having infusions every 6 months rather than the awkward tablet regime.

    I took Friday off to rest and relax and went out for lunch with a friend and her dog (and mine of course) which was lovely.  I was also out for dinner on Friday nigh so you had to roll me into Saturday lol.  I booked a cruise yesterday (not until October 2026!) but something to look forward to.  Just a 9 day jaunt around the Norwegian Fjords.  the Norwegian Fjords had always been on my bucket list, so I thought, why the hell not! 

    I hope everyone is doing ok and  hope your foot is on the mend!  What you like?! 

    xxx

  • Hi Carol, glad to hear you have now finished radiotherapy, another thing to tick off. I start the Zoledronic acid infusions next week, I agree that it will be less hassle than having to take tablets. Lovely that you have a cruise booked, definitely soethinng to look forward to. We've been saying for years we'd like to do a cruise. My foot is doing well, had the dressing changed on Friday. Will be getting the stitches out on next Monday and can then get back to my walking, which I've really missed. Take care and enjoy this gorgeous weather. Xx

  • Hi everyone!

      Glad you've finished radio and that you're feeling ok, Ive got one more week to go...so far feeling good but like you say i know you keep "cooking" as they said to me for a few weeks after..but so far so good! How long do you have to take the  Ibandronic Acid tablets for? or how many 6 monthly infusions will you need? Your norweigan Fjords cruise sounds amazing. It's on my bucket list too! So nice to have something to look forward to.

      How are you doing today? Hope you're ok and feeling a little better and more comfortable. Must have felt good to have a shower etc...but yes why people chose to have these ops is beyond me!!...although i am now quite attached to my scar as jsut shows what we've been through and how we've come out the other side...just!!... Hope you get on ok with the letrozole too. I'm a week into anastrozole which the same family i think and so far doing ok...although someone said it can take a few weeks/months before the real side effects kick in so i'm slightly nervous about what's to come but so far i'm feeling pretty good..really hope that continues and that you manage the letrozole well too. Hope you're feeling ok today...

     Gran canaria sounds lovely - definitely hope you can get out there before your op. Will be lovely to have a change of scene and some relaxation and hopefully distraction before your op. Good luck getting stitches removed next Monday - you'll be back out walking so soon!!..and yes enjoy the gorgeous weather!

    xx

  • Offline in reply to NGS

    Hi NGS,

    Yes, I had a lumpectomy first time around, then a double mastectomy the following year. That was all 14 years ago now. Unfortunately, I wasn't a suitable candidate for reconstruction, due to other non-cancer related surgery, so I remain flat. I manage fairly well with an assortment of prostheses for different occasions. I had some embarrassing situations when I first experimented with swimming prostheses. Some floated up around my mouth when I was in the water, whilst others fell to my waist and I felt like a running tap when I got out of the water. Fortunately, I've now got around these problems and go swimming twice a week, without such episodes.

    It sounds as if your surgeon has done a good job to preserve your nipples, even though your post surgical bra with the cut outs sounds so attractive! There is a huge difference in the comfort of post surgical bras. I have been left with bi-lateral lymphoedema following surgery and have tried a number of them. There are a few around that are ok - it's trying to find them. I wore M & S total Support bras to start with. They are not specifically for post-mastectomy, but they give good support. I do get fed up with my "add-ons" at times and often find myself going braless these days.

    So long as you have a reasonable support in your bra, and you haven't had too much swelling after your operation, chances are that you are unlikely to get necrosis. I hope that you continue to heal well and that it won't be too long before you can start getting your expanders filled. Please keep in touch and let us know how you get on.

    Kind regards,

    Jolamine xx

  • Hi Pippin,

    We all worry about the possibility of cancer recurring, but this is something that we gradually learn to live with. You have already had a lot of treatment and this is ongoing. You wouldn't have been left so long, if your care team felt that there was any likelihood of increasing the chances of this happening.

    I am delighted to hear that you are going to manage to fit in a holiday to the sun before your surgery. It does take a little longer to recover from diep flap, but place your faith in your surgeon. This is something that they do routinely and it gives a good result.

    I'm glad to hear that your foot is getting better and that you'll soon be out walking again. Have a lovely holiday.

    Kind regards,

    Jolamine xx

  • Thanks everyone for your reassurance, it really does help. I think I was worried as I know the cancer is still there at the moment, didn't want it to start increasing in size again, especially after going through all that chemo. But as you all say, they wouldn't risk leaving it so long if this was likely. I am on the phesgo injections, which apparently will keep this from happening. I have an oncology phone call on Monday, so I will delay booking flights until I know they are happy with date of surgery. Hoping to get the results of my ct lung scan too.

    NGS, just wondered, do they use dissolvable stitches when you have surgery? Hope your healing is going well.

    Carol, I hope you are feeling OK after your radiotherapy.

    Greeny80, hope all is going well with your radiotherapy, nearly there!

    Jolamine, thank you for your continues support, hope you are keeping well.

    Hope you're all managing to stay cool in this heat, it has been a little too hot.xx

  • Hi all.  Not sure if it’s because of  radiotherapy or just the way I feel. But have felt really lonely and a bit down today. But at the same time, I don’t want to see anyone! How crazy is that? I took the dog for a walk to see if that would help, which it did while I was out, but fed up again now I’m home.  Anyone else get like this sometimes? I live alone, so no-one to talk to about it. 

    Sorry to dump on you all 

    xx

  • Offline in reply to Carol1964

    H Carol.   Oh hun I know exactly how you feel.  Firstly you are not alone. We are all here for you.  I like you have been really low this week ; even tearful which is so not like me.  I think it is the overwhelming enormity of what we have been through.  And as the journey sort of comes to an end it hits you like a brick wall. 
    I look in the mirror and hate what looks back at me.   I hate being a burden on others.  I feel a shadow of the person I was before October last year.  I don’t want to feel alone but like you I really don’t want to see anyone outside of my bubble - because I look so different 

    can I ask where abouts you live if you don’t mind me asking.  I often wonder if any of us are nearby.  

    my breast care team have mentioned a Macmillan moving on course which is face to face which I am hoping to join in time.  I feel i need to be in the company of survivors / warriors who in truth just get it 

    This forum for sure has been invaluable. 
    so going back to location.  I know skegness have a warriors group that meet monthly 

    Peterborough have a cancer wellbeing centre open to all - I live in Lincolnshire -   They run arts groups and counseling support but you can pop in at any time just for a coffee and chat 

    please don’t be alone.  I’m often awake late in night or through night 

    we are here for you 

    xxx Norma xxx