Newly diagnosed, WLX / Lumpectomy - What's next ...

smlsml
smlsml Member Posts: 3
edited January 2023 in General discussion
I had my routine MG at BreastScreen in mid-Nov 2022, and got called back to do further MG, US and biopsy after 2 weeks.  On 8/12/2022 got told I'd got breast cancer ER+, PR+, HER2 pending.  BreastScreen had also arranged my initial Oncology appointment in the public sector in a week time, and told me that my surgery would likely be in early Jan.

Everything happening so fast, surgery for WLX (lumpectomy) and SLNB (3 nodes) was done on 5/1/2023.  And result got back in 2 week time.  It is breast cancer NST (15mm), Stage 1,  Grade 2, -ve on all sentinel nodes, ER+/PR+/HER2-.  In the post surgery visit, the registrar told me that I will have radiotherapy and hormone therapy.  As for chemo, he told me that although it is HER2- and -ve on sentinel nodes, all the cases he'd seen for my age group would also have chemo.

I'm thankful that all my treatment so far seems to be in a timely manner although I'm in the public system.  But at the same time it's kind of in the dark and I can only see and make one or two weeks plan as I would have no idea when my next treatment starts, and for how long.  My first radiation oncology appointment will be tomorrow and I still have not much clues in what should I ask.  The medical oncology one is in March.  So I guess, in between time I'll be occupied by radiotherapy.

It always puzzle me that I hadn't do any CT / PET scan to check if any cancer got to other part of my body.  Should I rely on the -ve sentinel nodes result?  Or is it the public practice that they won't do the CT / PET scan if sentinel nodes are clear?  Or should I ask for it?  Who should I have it check out with?  Although I've got told that my case is handled by the multidisciplinary team, but I only get to see each specialist one at a time, when one specialist had finished his/her work then move on to the next. 

Comments

  • Cath62
    Cath62 Member Posts: 1,274
    Hi there @smisml, sorry you find yourself here. It's so overwhelming isn't it. Yes everything happens fast and it is one step at a time. Your right when you say it's a multidisciplinary team but you see them one at a time. It works like that in both the private and public systems.  

    I never had a pet scan either and I asked my oncologist about why. I was ER+, PR+ and Her2-, grade 3, stage 1. No node involved. My oncologist said that while my pathology was aggressive, quick growing cancer, I had no other symptoms that required a PET scan and they don't want to put radioactive dye into me unnecessary given all my other treatment (surgery, chemo and radium). She said they really only go down that path if absolutely necessary. 

    I guess you could ask if you were worried about it but I accepted the advice and put it behind me. I was diagnosed in 2020 so coming up to my 3rd year now. Best wishes with your treatment.
  • arpie
    arpie Member Posts: 7,565
    edited January 2023
    So sorry to see you join our exclusive club @smlsml- the one that none of us ever wanted to join!  :( 

    It sounds like your team has it all organised .... Once you've finished your Rads and seen the Medical Onc re chemo & AIs, they will then arrange for you to see EACH of the team, once a year for at least 5 years (longer for your Onc & Rad Onc) spaced about 3-4 months apart, so that you see 'someone' on a regular basis for checkups and for support as well.   

    Yeah - They don't normally do PET/CT scans unless there are other concerns raised by you - tho like you,I believe it would make sense to have one done 'early on' - as a 'base line' for comparison over the next 5-10 years ..... for ALL patients who've been diagnosed with any type of cancer.

    Most Rads lasts for about 4 weeks, having treatment each day, Mon-Fri.  If you live in a regional/rural area and have to travel for treatment, some hospitals have a 'lodge' attached, where you can stay at a reduced rate, to save you having to travel big distances every day. 

    Cancer Council has a bunch of Q&A on radiation here - check it out & write down any specific questions you'd like to ask.  But feel free to put any queries on your thread here & we'll do our best to answer it for you. xx 
    https://www.cancercouncil.com.au/cancer-information/cancer-treatment/radiation-therapy/common-questions/

    Where abouts are you? If you add your 'general' location to your profile, we may have members nearby who you may be able to meet up with from time to time ..... 

    It was my GP who found mine, 4 months after a clear mammogram!  I had a lumpectomy, Rads and now Tabs (lucky to skip chemo) & have just had my 5th anniversary since surgery ... I see my surgeon on Fri for my 'sign off' - hopefully not needing to see him again!   Which type of BC was yours?  Mine was Lobular, which is famous for 'hiding unseen' inside of Dense Breast Tissue .... have they advised your of your Breast Density?  Maybe ask them - it is good to know! 

    Jump onto this thread & have a read - it has a lot of info on 'the site' as well as a bunch of 'tick sheets' (the link is down the bottom) that you can 'self assess' yourself in the lead up to your appointments with the team.  Do 2 copies of any that you choose to use - give one to your Onc/Surgeon & tick them off as they address each query.  Also, consider recording your appointments on your phone, as it is easy to 'miss bits' at the time ... you can go over it again later on, if you need to.
    https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-our-new-members#latest

    Take care, and all the best for your Rads appointment tomorrow & ongoing treatment xx
  • smlsml
    smlsml Member Posts: 3
    @arpie I'm glad that you're hitting the 5th anniversary. 

    Just had the Rad Onc appointment today, and I'm glad that the Dr I met was very patient in explaining and answering all my questions. I raised the concerns about PET /CT, but they don't think I'll need it as I do not fulfill their protocol requirements in carrying out the scan.

    On the summary of the pathology it said it is BC NST (ie not specific type).  But when I looked into the details about the size of the tumor, it has DCIS+IDC in the brackets.  So I'm not sure if I can categorized it as ductal.

    So good news is that the panel doesn't think I need chemo, and I'll be having 4 week Rads which should start in mid or end Feb.

    I'd asked about my breast density, but the Rad Onc I saw today said it was not on the record.  I guess I may need to ask my breast care nurse to find it out for me.
  • arpie
    arpie Member Posts: 7,565
    Great that you've dodged the chemo bullet, @smlsml .... one less thing to worry about!

    hmmmm - they only have to look at your Mammogram 'picture' to identify if you have dense breast tissue or not - and ALL the team should have access to that.  You should be seeing your surgeon again soon - maybe ask him and to SHOW you the screen too.

    Terrific that things have moved along so quickly - mine took nearly 4 months to get to the biopsy results!!

    The Rads will be over in no time!!  Just make sure you have plenty of lotions & potions on hand, to lather on after each session (NEVER before a session!)

    Take care & all the best with the Rads xx

    This pic below shows the various levels of Breast density (actual mammogram is the lower pics) - the more dense tissue shows as 'white' on the mammograms - and the Breast Cancer also shows as 'white' .....
    So 'white on white' = the cancer cannot be identified/seen on the mammogram.




  • cranky_granny
    cranky_granny Member Posts: 699
    Hi @smlsml never great to need to join this motley crew but its a great place to get answers to our not so everyday questions, even if just searching or browsing. Its 6 years for me since i was introduced to this site. Now all i do is clarify things with my oncologist. My gp is pretty hopeless re my treatment. So everything comes from this network of helpful people. My onc has never disagreed with what i have found out on here.
    The moral support is great too. 
    I went through the public system accept for seeing the surgeon before hand in her rooms 
    We all have differences in things as its tailored to suit our specific circumstances. 
    Due to my results along the way the treatment changed to suit. I just went with what was advised as i knew nothing about any of it. 
    I had chemo then breast conserving lumpectomy then rads. I didn’t have PET scan till 2 years after finishing active treatment and it couldn’t tell them anything more than the Bone Scan and CT had already told them. If it wasn’t for my medical oncologist not agreeing with my then radiation oncologist things could be worse now. I am metastatic but stable it was jumped on as soon as it  noticed as suspicious area on my annual scan
    good news is  the extra treatment and medication is doing its job.
    Best of wishes with the path your taking keep us updated and ask or just dump the heavy load theres no judgement here
  • Locksley
    Locksley Member Posts: 911
    @arpie thank you for showing the breast density pictures.  I often wondered what they looked like. 
  • arpie
    arpie Member Posts: 7,565
    The first thing the surgeon should do is to show you your Mammogram pics & SHOW how & where the glitch is .... to give everyone a better understanding about breast density in particular - and also why Lobular is so hard to identify - even if NOT having dense breasts, @Locksley!   I really can't understand why they don't!