What now?

Salina888
Salina888 Member Posts: 96
edited June 2014 in Life After Breast Cancer

Hi there!  This site is awesome, I joined about a week ago.  I was diagnosed with Stage 1 Invasive Ductal Carcinoma (IDC), 1.8 cm left breast, lymph node negative, Grade 2, Ki-67 High (69%), ER+, PR+, Hers2-.  I completed everything, double mastectomy with immediate reconstruction (expanders), Chemo (4 cycles of Taxotere and Cytoxan, and permanent silicone implants, and now I am on Tamoxifen for the next 10 years.  

BTW...It was my choice to do Chemo, Oncologist could not, and would not tell me, but after about a week of thinking and praying, I decided to do it.  My Oncologist agreed after the fact.  My Oncotype DX Score was 18, but because of my age (42), Ki-67 was high, Grade 2, and to have the peace of mind that I did everything possible to prevent a recurrence. The TAILORx Trial results are not due for a couple of more years, and would be bummed to find out that it was beneficial to do chemo with an intermediate score.  

I only see my oncologist and plastic surgeon, I have not seem my surgeon that did my mastectomy since a week after the surgery.  Am I supposed to see him?  Where do I go from here? When am I supposed to get another MRI or PET SCAN to make sure everything is cleaned out?  

I pray you all find Peace!  Be strong, and God Bless! 

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  • Holeinone
    Holeinone Member Posts: 2,478
    edited February 2014

    Salina,

    I just finished the treatment, surgery, chemo, rads & started Arimidex last  week. I am stage 3. My oncologists and from what I have learned here, do not do any more tests, except for your yearly mammogram. The test have too many things that will show that are not cancer, plus they expose you to more radiation and very expensive. 

    Your Drs. took the cancer out with your  mastectomy. The chemo took care of cells that maybe were out there.

    Believe me, I also have a hard time wrapping my head around this, if you have some horrible pain that lasts more than 2 weeks they will run tests. Your Drs. Might have a different protocol. 

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  • Salina888
    Salina888 Member Posts: 96
    edited February 2014

    HoleinOne,

    Thanks for the info, I heard that from someone else, but I thought that couldn't possibly be true, but I guess it is.  It's just that I hear so many stories of recurrence at the local site.  Which leads me to believe that some doctors didn't do such a good job initially.  

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  • ziggypop
    ziggypop Member Posts: 1,071
    edited February 2014

    Hi Salina - I don't know for sure, but I think that a lot of us go through this surrealistic warp - for a year or so we're dealing with doctor's, surgery, appointments, tests, keeping everybody apprised of what's going on and how we're doing, and we're told all of the time what we're supposed to do and who we're supposed to see next. And then all of the sudden it's like the train stops, and we find ourselves on the platform and they say .. "See ya in 6 months, or a year. " And as you're yelling to them  'Wait, but what about..." they are on that train and it's pulling away & they're just waving and smiling. 

    My basic schedule with a stage 3 diagnosis, multiple node involvement, etc. is: See surgeon every six months or year for next two years - visits thus far have taken no more than 4 minutes with him in the room. Mammogram every 6 months on 'good breast' every 6 months for 2 years, then regular schedule thereafter. See MO once every 6 months unless something concerning is going on (for 2 years, once a year after). That's it (I'm currently also seeing plastic surgeon as I just had exchange). No PET, MRI etc. It sounds to me like that is standard protocol. 

    At first it can seem really disconcerting (at least to me it did), I was like, but... um... don't you... uh.. you mean.. uh.. this is pretty much it? 

    Our lives get turned upside down all willy nilly & then it's like - 'okay, see you later, bye!' 

    It takes a while to get back into the 'normal' population - which is weird because God only knows that we would love to be in the 'normal' population that isn't dealing with this 24/7. 

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  • penguin1
    penguin1 Member Posts: 91
    edited February 2014

    OMG Ziggy!  You totally described it exactly!  I just went to my 'last' appointment after a year of crazy appointments and it feels weird.  I won't go back for another 6 months and then once a year.  I feel like I'm going through some sort of withdrawal- not sure why, but you pretty much said it all.  Glad I'm not the only one!

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  • Salina888
    Salina888 Member Posts: 96
    edited February 2014


    Lol....I feel the same way! :)

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited February 2014

    Zig - You hit the nail on the head. When I got the "see you in three months" notice I felt like I was all alone on a raft, utterly terrified, in the middle of the ocean. Salina - I'm so glad you are at peace with your treatment decisions. It is so important to know you've done everything you can, then you can relax a little. I seem to be in the minority on these boards in that my onco orders yearly MRIs. Otherwise no tests except for occasional blood work to check an issue with anemia. I'll go every three months until 2 1/2 years, then every six for a while. I was not scheduled to have another appointment with my BS, but I asked to see him 6 months post-mx just because I had some questions.

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  • Salina888
    Salina888 Member Posts: 96
    edited February 2014

    Lucy,

    I'm glad you responded, because now I know that there is someone that gets MRI every year.  I'm going to make sure I bring it up on my next ONC appointment.


     

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