What did you wish you asked?

Miss_LMiss_L Member Posts: 3
edited January 14 in Newly diagnosed
Hi there,

I'm new to this network so not sure if this is the right way to go about it. I'm 33 and got diagnosed with DCIS in late November, had a mastectomy and reconstruction in December and have started having conversations re: my treatment plan as my results are now that its stage 1.

I have met with my radiation oncologist who was very helpful in explaining how radiation works, but couldn't/wouldn't tell me direct if he would recommend radiotherapy to me.

I am meeting with my medical oncologist next week and staring to make a list of the questions I should ask. I wanted to know if there is anything any of you really wished you had asked or glad you asked? I feel this all moves so quickly and I have no time to make such big decisions so I want to make sure I ask the right questions.

Especially keen to hear from anyone that was planning for a baby at the time of their diagnosis/treatment? My husband and I were planning to start a family this year (got married 2 months before my diagnosis!) so this has added another layer of anxiety and stress.

Thanks in advance. I'm feeling so overwhelmed at the moment.

 x

Comments

  • WonkWonk BrisbaneMember Posts: 58
    Hi @Miss_L and welcome.
    When my specialists sat on the fence about recommendations I would ask...
    ”If I was your wife, what would you recommend I do?” 
    They looked surprised but would usually give a straight answer.
    All the best, there’s lots of lovely people on this forum who will help you through xxx
  • iserbrowniserbrown Regional VictoriaMember Posts: 3,779
  • arpiearpie Mid North Coast, NSWMember Posts: 3,104
    Sorry to see you here, @Miss_L  Welcome to the Blog -  you are in the right spot to ask any question you think of.   That's a bit of a shock, so early in your marriage!  

    There is a 'Young Women's group (to the right hand side of the page - that you may like to join  ..... where you'll be able to ask more specific questions as well - it is a closed group, so not open to the public to read.

    Has your Radiation Oncologists give you the 'percentage advantage' that having radiation  may give you of hopefully not having a recurrence?   I can't remember what I was told - other than it would be in my best interests to have it done - but that chemo wasn't on the table.  So I got off lightly compared to some.  

    So I had the Rads .... and I am now on Hormone Tablets as well, even tho it only gives me a 1% reduction in the likelihood of recurrence ...... 

    As @Wonk says - ask them what they would suggest if it was their mother, wife or sister .... 

    All the best with this decision making xxx

    PS  Whereabouts are you (city/town) - we may have members there who know of all the resources available to you.

     
  • Patti JPatti J Member Posts: 583
    @Miss_L. I would ask for copies of my reports. 
    18 months later, after being diagnosed with mets, I  have only just been given copies of my CT scans, MRIs and bone scans. I have only just asked for them. They make for very interesting reading. My husband won't read them. 
    Good luck with your future plans.
  • kmakmkmakm MelbourneMember Posts: 7,598
    Can you clarify, Stage 1 meaning that what they initially thought was DCIS turned out to be invasive ductal carcinoma (IDC)?

    Given where you are in your life, and your age indicating that your cancer is aggressive, if you can afford it (in the vicinity of $3000), I'd enquire about a genomic test, whether that would be useful. It looks at the specifics of your tumour and gives an indication of how curative chemo can be if you've had some random cells escape that are looking for somewhere else to grow in your body. I'm not sure if it's useful in regards to radiotherapy.

    You should also ask your breast surgeon/oncologist about your ki67. This indicates the aggression of yiur cancer as well.

    What is your family history? It's not just the expensive BRCA testing that can be done. For about $400 you can do a spit test of up to 61 genetic mutations, several of which are linked to increased rates of breast cancer. It takes a few weeks. Mine went to Sam Francisco. Quicker and cheaper than doing it in Australia.

    I think you are right to seek advice about what to ask. You are very young and this is a bugger of a disease that is not fully understood. I'm a big one for asking questions and information gathering. You also have to be your own advocate. With all the best will in the world, we are just one of many patients our doctors have. It is too easy to be fobbed off. You have to become expert in your own condition and be your best advocate.

    Get copies of everything, don't hesitate to ask what anything costs and if there's a cheaper alternative. Surround yourself with a team you like and trust, and listen to your gut.

    And come here as often as you need! This is a superb hive mind and you're never alone. Big hug, K xox
  • SisterSister Adelaide Hills, SAMember Posts: 4,406
    Welcome @Miss_L Regarding the fertility issues, you need to be up front about it.  I know there are other women on this forum who have faced this as well - they may be able to help you with this 
  • Miss_LMiss_L Member Posts: 3
    Thank you all for your responses and advice.  <3

    @arpie my radiation oncologist said radiation would cut my recurrence chances down by half, so to me that makes me feel that it's the right thing to do. I too have been told no chemo but most likely Tamoxifen but I will know more on Monday. I live in Balmain, Sydney.

    @kmakm, that's right. Initially diagnosis was high grade DCIS (9cm tumor) but pathology results post-mastectomy showed minor invasion. Thanks for the suggestion of genomic testing. I have a family history so I am open to any additional testing beyond just BRCA.

    :)  xx
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