Help! What should I do?

CathyMac
CathyMac Member Posts: 65
edited November 2018 in Newly diagnosed
i was diagnosed with breast cancer on Thursday the 8th November and am currently trying to get in to see a breast surgeon. So far my doctor can only get me an appointment on the 23rd Nov which 11 days away. Another surgeon can see me on Friday the 16th Nov but can't operate until the 7th Dec. what should I do? This waiting is all consuming and the thought of waiting another 11 days is excruciating.
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Comments

  • Blossom1961
    Blossom1961 Member Posts: 2,362
    Have they told you you need an op before other treatment? I had six months chemo first and am having a mastectomy on 27 November.
  • CathyMac
    CathyMac Member Posts: 65
    I know nothing at this stage. Just that it's cancer. I have no way forward at the moment and feel like I'm in limbo land.
  • Blossom1961
    Blossom1961 Member Posts: 2,362
    The surgeon would not make you wait if it was urgent. Waiting is the hardest bit. Some of the other ladies will no doubt be on soon with good suggestions. The ladies on here are fantastic so try to pre-occupy yourself for a bit, do a bit of whatever your hobby is and before you realise it, you will have more responses.
  • j9k
    j9k Member Posts: 98
    Hi @CathyMac, the waiting is awful. Did you get pathology results when they told you it was BC? Did you have a biopsy? I was diagnosed with DCIS in April and waited a few weeks before surgery. It didn't need to come out immediately as it was early stage. That was my choice and the surgeon was ok with that but I did get to see the surgeon within a week. 
  • Zoffiel
    Zoffiel Member Posts: 3,372

    Deep breaths, @Cathymac I know the waiting is tough, but hang in there. The delay between seeing the surgeon and actual surgery may seem like a long time, but it is pretty common. I'm assuming your diagnosis was via a biopsy if you haven't seen a surgeon?

    Until you get rid of the lump and they can figure out exactly what is going on, you are in for a rocky ride; it is pointless to speculate until you get through that first op and the pathology results come back. Once you know for sure what you are dealing with it will be time to make decisions about what you do going forward. I had chemo before surgery as I wanted an immediate reconstruction and my cancer was advanced and aggressive. It was more important to attack the systemic issue in my case than it was to address the poor margins of my lumpectomy. Everyone is different.

    It's small comfort, I know, but the couple of weeks wait will not make a huge difference in the long run however,in my opinion, it is worth avoiding being in hospital over the festive season if you possibly can, so getting in early makes sense. The cancer has probably been brewing along for some time, and while you can imagine it growing once you know about it, things wont get significantly worse if your surgery is delayed for a few days. Pick you surgeon carefully; you'll be having a long term relationship with them, so don't rush just because you are stressed.


  • CathyMac
    CathyMac Member Posts: 65
    Thanks for the advice. I won't rush then! The core needle biopsy showed invasive ductal and mucinous carcinoma DCIS high nuclear grade. I have no idea what this means. 
  • j9k
    j9k Member Posts: 98
    @CathyMac I have noted others have recommended the BCNA  helpline - 1800 500 258. You can talk to someone about your concerns and your diagnosis,maybe get info about other supports in your area. 🙂 
  • kmakm
    kmakm Member Posts: 7,974
    This might be a useful place to start. If I was in your position I'd read it and then make an appointment to see your GP to clarify the bits that you don't understand. This might help settle your mind while you wait.

    Giving the BCNA helpline as suggested above is a good idea. It's staffed by nurses who can help you decode.

    I had my mammogram on the 4th Novembet last year. It was three weeks before I received my callback letter. Don't stress about the wait more than you can help. If they see something truly urgent you'd be seen immediately. K xo 
  • arpie
    arpie Member Posts: 7,524
    @CathyMac - sorry to see you here - but you are in the right spot for support & advice from those who have gone before you.

    Sadly, the waiting is the pits!  :(   In the meantime, try not to overthink it - it will do your head in  :(    Have you checked out the 2 surgeons you are tossing up as 'the one' for you?   I googled the 2 suggested for me - and one was a clear 'winner' over the other (they sort of do a "Trip Advisor'' on surgeons now!!)  

    Where abouts are you based?  Others nearby may be able to help you with all things BC, including surgeons!  Do you have private Health Insurance?  If yes, you 'could' be done earlier .... tho often there is a bit of a  'financial cost'!   I went private for surgery & public for Radiation.  If I needed another surgery - I would probably go public next time, even tho there may be a wait! 

    When my GP found my lump last Nov - it was the start of the 'Big Wait' for me (I live in a rural town up the mid north coast!)  I had to wait 2 weeks for an ultrasound/mammogram (early Dec), then wait another 2 weeks for the biopsy (between Xmas & New Year) and got my actual diagnosis a week later on Jan 5 (I was still hoping it would be cysts!) .... then all the surgeons were on holidays til mid Jan ......  so surgery wasn't til Jan15th - 2 months from 'detection'.

    As @Zoffiel says - Deep Breaths (lots of them!) and maybe put the Big Girl's pants on ...... You could start by getting bits together for your hospital stay ...... ear plugs, eye mask (hospitals are notoriously noisy & bright!), sudoko or magazines (don't take a novel - just too much going on to be able to concentrate), a front opening nightie makes it easier to show the nurses & surgeon your 'bits' ..... slip on slippers ..... maybe some treats (lollies or chocolate ...) 

    All the best as you await your surgery & results  xx


  • primek
    primek Member Posts: 5,392
    In the big picture of breast cancer it takes some time before it really spreads out so 11 days won't make much difference, just make you worried of course.
    On your previous post I added a link about different types of breast cancer so armed with your pathology have a bit of a look at that.
    As with all breast cancer...the final pathology once removed is the one they plan on. Mostly they do surgery first but sometimes they offer chemo first depending on its location to chest wall or size overall.
    Use the time to look at different surgical options and if you would want reconstruction  or not if you had a mastectomy. All very relevant things to think about and help you plan surgery at time of your appointment. 
    Reclaim your curves. ..is a good site  to look at with what surgical reconstruction is available also.

    https://www.reclaimyourcurves.org.au/breast-reconstruction.html

  • kitkatb
    kitkatb Member Posts: 442
    Hi @CathyMac,  the waiting is just the worst but hang in there. I was also invasive ductal carcinoma  Grade 3 as well as high grade DCIS like you.  I found out in April this year and my first surgery was in May.  I had a lumpectomy then re excision in June to widen safety margins.   They decided then for me to have chemo to mop up anything left from the invasive carcinoma tumour then for me to have the mastectomy due to the high grade DCIS they found on scans after the second surgery. Cancer is so individualised now and treatment plans are different for each person.
    It was a good 4 weeks before any surgery plans were made for me and like many on this forum will tell you waiting is the hardest as your mind goes into overdrive thinking of the worst case scenario's.  But as the others have said deep breath.  
    Let us know how you go.  I decided against reconstruction as I just wanted to concentrate on getting rid of the cancer. These are decisions you don't have to make straight away and again everyone is different but it was the right path for me. big hugs to you. xox
  • CathyMac
    CathyMac Member Posts: 65
    Thank you for all your advise. I saw my GP this afternoon and have a bit more of a plan now. I will have scans this week and blood tests. So the surgeon will have all that info when I see her on the 23rd. I think I have reconciled I will just have a mastectomy straight up and consider what to do about losing a breast when cancer is gone.
  • kmakm
    kmakm Member Posts: 7,974
    @CathyMac If you have a bit of time to think, do look into immediate reconstruction when you have your mastectomy. Depending on your treatment plan, you get better results with an immediate recon. Check out the website @primek linked you to. K xox
  • Trussy
    Trussy Member Posts: 16
    Yeah i had immediate reconstruction and don't regret it. However i have heard if you need radiotherapy its not always a good option. Good luck @CathyMac this time is very overwhelming, so many decisions. Big hugs to you xxx
  • Silba
    Silba Member Posts: 115
    This is a game of learning patience , patience with all the tests , scans and app. you have to see, I was similar to you , but when I saw surgeon , the scans showed it had spread to a few other places , so chemo first 6 months ,wait to be a bit stronger , more scans , then surgery , wait again to get a bit better , radiation next.
      So trust me and all the ladies that are on here, just do one day at the time and don't stress ( i know hard not to) when what you want isn't what your oncologist and surgeon have planned for you.

      Breathe ......Good luck .