Did anyone else not know treatment plan until after mastectomy?

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tlgio17
tlgio17 Member Posts: 191

Hi

I am scheduled for right side UX (w sentinel lymph) on Dec 6th. Dr does not know for sure if its in my lymph because the biopsy was unclear for lymph tissue. So my BS mentioned she would not know what my treatment plan would be until after surgery. From most of the others stories I have read, it seems like the majority know what their plan is ahead of time. Not knowing is making it difficult as far as my return to work plans and filling out STD paperwork for my employer due to the unknowns.

Was wondering if most take off a block of time for surgery, radiation and chemo if needed, or have you gone back to work in between?


Thanks for any feedback, appreciate it as I get ready for this next step in my journey.

Nervous!

Thx,

Traci



Comments

  • SpecialK
    SpecialK Member Posts: 16,486
    edited November 2016

    Unless you have an aggressive subtype, or present with advanced or locally advanced disease, it is pretty common not to know the treatment plan until after surgery. Reliance on Oncotype Dx, or other genetic assay testing, means that treatment decisions are often not made until that information comes back from the surgical sample submitted. If you are having a mastectomy you will need recovery time that should coincide with the wait for answers. I initially thought I would be off (with FMLA and STD) for 6 weeks while I recovered from BMX with expander placement, then return to work, and then use FMLA intermittently through chemo. Are you using FMLA, or just STD? Do you have the option of LTD also? My plan went out the window as I ended up having 4 additional surgeries that included ALND and expander removal on one side before chemo even started. I used all my FMLA and STD prior to chemo - almost to the day. I was fortunate to have employer supplied LTD and I was offered an ADA accommodation and stayed out another 5 months with job protection during chemo and returned to work 30 days after my last infusion. The additional surgery made me less able to sustain the rigors of my job during chemo, and I worked in a bio-hazardous environment in the hospital, so my oncologist didn't want me there. Surgery, recovery, and chemo and/or rads will most likely exceed FMLA and STD if all are done and you don't work during that period, but others have been able to use FMLA/STD for surgery and recovery, then intermittent FMLA for other treatment if they are able to work some of the time.

  • tlgio17
    tlgio17 Member Posts: 191
    edited November 2016

    Thanks SpecialK, so far I have FMLA and STD being filled out now by Dr for my employer, but they do also offer LTD. I guess its really hard to estimate since things change so often on this journey! I had just asked for 2-3 weeks for surgery and recovery, thinking I would come back in between but we will see how it all ends up.

    Thanks again!


  • SpecialK
    SpecialK Member Posts: 16,486
    edited November 2016

    Good luck and try not to let these details stress you - often there are changes in the early stages of treatment decision making, it is best to try to maintain some flexibility, although I know that is hard!

  • tlgio17
    tlgio17 Member Posts: 191
    edited November 2016

    great advice! thank you!!

  • gardengypsy
    gardengypsy Member Posts: 769
    edited November 2016

    SpecialK said it all...well done!

    l did not know my treatment plan till after surgery. But that's because the sentinel node biopsy at surgery time changed my course of treatment.

    Try to be ready to take care of yourself, no matter what you've planned.

    Good luck.

  • Goincrzy8
    Goincrzy8 Member Posts: 387
    edited November 2016

    I wish I knew my treatment plan also, again the waiting to know what is happening is nerve racking. MX on Dec 9

  • LADYnKY
    LADYnKY Member Posts: 58
    edited November 2016

    I did not know my treatment plan either I believe that my IDC was found in the earliest of stages and 0/4 nodes concluded that I was a lucky soul that did not need chemo or radiation but I was a nervous wreck going to the onco for my first visit. He walked into the room w my report and said he had nothing but good news. Best of luck to al

  • tlgio17
    tlgio17 Member Posts: 191
    edited November 2016

    thanks gardengypsy, the waiting and not knowing is the hardest part for me.

  • tlgio17
    tlgio17 Member Posts: 191
    edited November 2016

    I feel the same way goincrzy8- my surgery is Dec 6th so we will be healing at the same time.

  • tlgio17
    tlgio17 Member Posts: 191
    edited November 2016

    thanks LadynyK, its nice to hear your positive results!! It is very nerve-wracking.

  • RedemptiveSufferer
    RedemptiveSufferer Member Posts: 242
    edited November 2016

    Hi, Traci! You know my timeframe coincides with yours, surgery the same day, etc... so I can't offer insight like the others. Just thought I'd add that I have a "loose plan" in place. I met the MO who after reviewing what we know of the cancer so far, said Tamoxifen is in my future. But the million dollar question about chemo can't be answered until the MX when they check they lymph nodes. She said if those return positive chemo will be put on the the table plus I'll have the Oncotype test to determine chemo's value in my case. So for what it's worth, I really don't have a firm plan in place either...just possibilities. ~ Kim

  • tlgio17
    tlgio17 Member Posts: 191
    edited November 2016

    Hi Kim, yes we are Dec 6th surgery sistas 😃. Ok thanks for sharing. I was feeling like I was in the dark w treatment but it seems like it's subject to change for everyone.

    Hows your shopping and prep going? I got a few things. Hope you had a nice holiday!

  • Dafne
    Dafne Member Posts: 104
    edited December 2016

    Same goes for me. All I know so far is that Tamoxifen will be on my life for at least the next 5 years. As for chemo, so far docs think I will not need it, but actually we won't know till the MX, after checking the lymph nodes. I just wish my first surgeon had done a SLNB while he performed my lumpectomies, but unfortunately he did not. So, it's just wait and (pray) see...

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