What did you wish you asked?

Miss_LMiss_L Member Posts: 3
edited January 2019 in Social Groups
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.



  • RokusanRokusan Sydney, NSWMember Posts: 18
    Hi @Miss_L 
    I am 34 when diagnosed last October with DCIS and stage 1. I also had mastectomy (single) with immediate reconstruction. Because of unexpected results, chemo and radiotherapy have been deferred and now I am on hormone therapy treatment. 

    Well, the 1st time (about 3 weeks post op) I met with my medical oncologist , he discussed my case and results after surgery. As my husband and I were also planning to start a family last year, I discussed this with my MO and he mentioned about IVF process (my husband and I started the IVF process a week after that and thankfully after 2 weeks of daily injections and scans&blood tests, we were able to successfully freeze 2 embryos) before undergoing chemo (due to high ki-67 from pathology result).

    After IVF process, we had another appt again with my MO and he mentioned about EndoPredict Test. Although the test is not yet covered by Medicare, my husband and I decided to pay for the test, and thankfully the result came out low risk and my MO cancelled my chemo sked. And now, I am currently on hormone therapy (tamoxifen). My surgeon specifically told me not to get pregnant as my BC is ER+ .When I met with my radio onc before, he also told me not to get pregnant at this point in time (he suggested some ways like using condoms, IUD and such) but maybe in a few years and specifically told me that if I wanted to get pregnant in a few years, they should put me off tamoxifen in about 3 months before I start to get pregnant. 

    All in all, I reckon it is a good thing to discuss with your MO about family planning so that he will be aware of your circumstance and future plans which will aid your MO to have a treatment plan suited just for you.

    Rokusan xoxo
  • _Anna_Anna Member Posts: 3
    Hi @Miss_L

    I'm so sorry you are having to deal with this. Fertility adds a complex layer of uncertainty and it's stressful to be making such huge decisions in such a short space of time. There's a good chance you've already made some decisions but I imagine this post might help others too. 

    I'm 35 and my husband and I had decided we would try to get pregnant just weeks before I found this tiny little lump in my breast. I had a lumpectomy earlier this year and the results were promising (relatively speaking): grade 1, stage 1, estrogen and progesterone positive, no spread to lymph nodes. However, we had some big decisions to make about IVF, radiation, hormone therapy and timing over the next couple of years. The gold standard treatment for me would have been surgery then radiation then 5 years of tamoxifen but that would make me 40 before I could start trying for a baby...
    (NB I was not a candidate for chemo)

    To answer your question, here's a few questions that I found really helpful to ask or wish I'd asked: 
    On treatment options:
    - What are the 5-year and 10-year survival rates for my type of cancer? (The NHS predict tool was excellent: https://www.predict.nhs.uk/)
    - How does this differ with and without radiation? Hormone therapy?
    - Are there any long term fertility risks arising from radiation therapy?
    - What are the side effects of hormone therapy?
    - How will my team coordinate and communicate with each other (incl my GP, cancer team & fertility specialist)? If fertility treatment needs to happen before cancer treatment, how can we fast-track that process?

    On fertility options:
    - Can you refer me to a fertility specialist, preferably someone who is familiar with IVF protocols for oncology patients? (GP or oncology team)
    - What advice do you have about how long to wait before I get pregnant? (Med onc)
    - Can we delay radiation in order to do an IVF cycle? For how long? (Radiation onc). 
    - Can I do an IVF cycle after radiation but before hormone therapy commences? (Med & Radiation onc)
    - What is the minimum time required between completion of radiation therapy and getting pregnant? (Radiation onc)
    - How does the hormone therapy affect the timing of my pregnancies? What are the risks of stopping hormone therapy early in order to get pregnant

    FYI in the end we decided to do, in this order: 1) Surgery (lumpectomy), 2) a single round of IVF, 3) Radiation, 4) Hormone therapy for 2 years, 5) Try for a pregnancy

    Again, so sorry you have to deal with this. Take care and happy to chat more if you're still in the process of making decisions. If not, what did you end up deciding? Good luck!

  • CRMCRM MelbourneMember Posts: 65
    Can I ask about the general/approx cost of IVF? I am 32 and have just been diagnosed. Have had lump + main node out but no results yet. I'm terrified about what is to come and all the decisions I will need to make. I also have no idea how much this disease is going to cost... 😑
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