Waiting time for therapy

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Joarden
Joarden Member Posts: 57
edited February 2020 in General discussion
Hi..4 weeks since surgery, what is average wait to start chemotherapy/radiotherapy please?? Feel scared just sitting here, hope its not getting worse.. Live in a regional town, so even results took a while..how long has everyone waited?? 7 out 10 lymph nodes removed were a concern..:-(( TIA.
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  • Dory65
    Dory65 Member Posts: 323
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    Do you have appointments with the oncologist and radiation oncologist?
  • Afraser
    Afraser Member Posts: 4,390
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    4 - 6 weeks between surgery and chemo is not unusual. Have you had your pathology results post surgery? Your oncologist should be able to advise. Surgery has removed the source which is important! 
  • Joarden
    Joarden Member Posts: 57
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    Hi..got results last week, referred to oncologist, but no call for appointment yet..great the source is gone though, you are right!!..:-))
  • Joarden
    Joarden Member Posts: 57
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    No appointment yet, waiting to hear..
  • YellowRobin
    YellowRobin Member Posts: 52
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    Hi @Joarden waiting is hard. I live in a regional area also. If it was me I would pick up the phone and ring the oncologist to get my appointment. I must admit I rang my surgeon and asked when I would meet my oncologist as I felt a bit up in the air with the process. This was before surgery. He did the referral and I got in the next week. Surgery is done and dusted and my next oncology appointment is on Thursday (3 weeks after surgery).
    Do you have a breast care nurse? They are good at finding out what is happening or passing on your concerns. I’m sure your team has got everything under control but need to communicate with you a bit more. Good luck and Keep us posted xx
  • Tinks
    Tinks Member Posts: 234
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    I agree @Joarden, I’d ring and try to get your appointment sorted out. Referral should have come through by about now.  Xx
  • Joarden
    Joarden Member Posts: 57
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    Thank you, will keep at them.:-))
  • Joarden
    Joarden Member Posts: 57
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    Hi, yes have a breast care nurse, and she has been great..also a social worker at the hospital.. She asked last week as well, and told they are really busy..:-((..just need some more details about my condition, especially how its tracking.. Worried about the wait,while it may be progressing?? Thank you, and hope you are doing well..xxx
  • arpie
    arpie Member Posts: 7,733
    edited February 2020
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    The waiting is such a pain in the proverbial @Joarden  ..... They actually lost my referral somehow when trying to organise my Rads & I was getting not only frustrated, but also very angry and even more upset.  All the surgeon's office had to do was email/fax it .....    I was also told they were really busy too - and that they were doing people on a 'as needs it more urgently' basis - and that mine wasn't urgent.

    As @Afraser said - the culprit is no longer there - it has been removed, so it is unlikely to be spreading - and you need to totally heal before they can start doing the Rads.  My surgery was in mid January 2 years ago & my 4 weeks of Rads only finished the day before Good Friday - so my Rads start date was about 6 weeks after surgery.   They said I could actually wait until after my holiday to Norfolk Island - but I wanted it done & dusted BEFORE then - cos that was my reward for going thru all this crap!!

    So try not to get too upset about the wait ..... try & keep busy - both mentally & physically and just keep your phone handy for the call!

    Where abouts are you? If you put your town/city in your profile, other members may be able to point you towards specific services available to you in your area.  I am rural too.  I was able to 'live in' on the hospital grounds at very reasonable cost instead of driving back & forth every day - a 3hr+ round journey.   I see my surgeon in Sydney on Monday for my 2 year check. 

    Being rural, if you have to travel for your treatments & appointments - did you know that you can claim petrol money (and some accommodation) if you have to travel more than 200k in a week (NSW) or if each part of the trip is 50k or more (Qld) - not sure about other states.  It is the Isolated Patients Travel Assistance Scheme. If you put that into Google, it will bring up most states info. 

    Take care xxxx
  • Joarden
    Joarden Member Posts: 57
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    Thank you, SO much.. Feels like its been forever!! A dumb question please ( I am great at those!) If the " culprit is gone, why do I need chemotherapy ??? Just looking for hope.:-((
  • Afraser
    Afraser Member Posts: 4,390
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    Perfectly reasonable question. The tumour has gone but cancer cells can spread, often through lymph nodes, and may still be capable of developing. Chemo is recommended to kill off fast growing cells (unfortunately that often means your hair too!) which may well be cancerous or potentially cancerous. Research is looking for ways to hone in more accurately on the rogue cells but until that is better developed, we use a sweeper approach (kill off anything that mighty be...). It’s not absolutely guaranteed but in many cases it still seems to be most effective course of action. 
  • arpie
    arpie Member Posts: 7,733
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    If any of your nodes are involved @Joarden .... even if by 1 cell ... it may have escaped into your body .... So the chemo is to mop up randoms that may have escaped.  My husband had 50 nodes removed and tested, and cancer was found in just one of them. He didn’t want to have chemo, but he did, as the safe option.  10 years later he is still here, even tho 70% usually don’t make it to 5 years for his type of cancer.  He had most of his stomach removed. 

    You say 7 of 10 nodes were ‘a concern’ .... have you seen the pathology report?  Were they positive?

    Your Onc will take you thru all the options

    Take care xxx
  • iserbrown
    iserbrown Member Posts: 5,576
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    @Joarden
    https://www.bcna.org.au/understanding-breast-cancer/treatment/chemotherapy/

    This link may help you better understand why.  

    Take care
  • Joarden
    Joarden Member Posts: 57
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    yes, I'm quite sure she said they were positive..:-((
  • arpie
    arpie Member Posts: 7,733
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    Have you heard from them yet?  Try not to overthink it @Joarden - our brains just go into overdrive & almost always thinks up the worst scenarios!  grrr 

    Wait til you see your Onc & be guided by them.   Different chemo mixes are used for difference types of BC - with a bit of luck you won't get the side effects that some get.  Some work thru, not everyone loses their hair, tho it may well thin out a lot.  

    Take care xx