chaotic dx so many questions

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Maudene
Maudene Member Posts: 3
edited June 2014 in Managing Side Effects of Breast Cancer and Its Treatment

So I apologize I'm new to this site and don't quite know how to navigate it really well. I was dx on 9/11 (irony?) with DCIS with further testing stating I was also ER+/PR+. Everything went so fast and I'm left sitting with so many questions!

Dx followed a 6 month recheck mammogram and stereotactic biopsy. They scheduled me with the genetic counselor and my surgeon within a week. The genetics came back negative for BRCA, the biopsy led to an MRI and ultrasound and the surgeon pretty much just said, "lumpectomy, radiation, tamoxifen, see ya in a week." Not quite as harsh as that but almost. No time for questions about prognosis, choices, diagnosis, effects, insurance, mental comprehension/stability.

On 10/18, I had a lumpectomy and was sent home before even fully conscious (thank God for the husband and daughters).  So tomorrow, I meet wikth the RO, the surgeon and the MO and I'm not even sure who to ask what? The rationale behind the radiation is troubling because they said there were clear margins. I have no idea what grade/stage I am. The tamoxifen side affects are terrifying and dang it, I'm nervous!

So frustrating because I have unanswered questions, I don't know who to ask or even who to ask what questions to! Who should I be directing this stuff to?

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  • juliaanna
    juliaanna Member Posts: 1,043
    edited October 2012

    Maudene,

    First, whatever your questions, make sure you understand the answers.  Keep asking the questions until you feel comfortable you understand.  If you don't understand the terminology doctors tend to use, keep making them repeat it until they respond in terms you can understand.  Don't let any of YOUR team rush you into any decisions.  This is your body, your life.  The doctors are working for you.  There is no reason to proceed until you are confident you understand the treatments and consequences.  You can always opt for second opinions. 

    "No time for questions about prognosis, choices, diagnosis, effects, insurance, mental comprehension/stability."-this is a good start on the questions you need to ask and have answered.  Probably most of these questions can be answered by the MO.  The RO can answer the questions about radiation.   Write your questions down so you don't forget to ask. 

    Do you have access to a nurse navigator?  This person should be able to help you with answers and to help you through the process.

    Be sure to have someone go to the appointment with you.  They can be your second set of ears and take notes for you.  Take a tape recorder if you want so you can listen to the conversation again.

    Your appointment isn't over until your questions are answered.  There is nothing wrong with delaying treatment for awhile until you can wrap your head around what is happening.

    Best wishes.

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited October 2012

    Sorry you find yourself here, and with what sounds like a non-cooperative surgeon.  The docs you see from this point on will hopefully be a little more patient and informative.  Have you asked for copies of your pathology reports?  You should request them from both your stereo biopsy and lumpectomy.  These reports will contain your grade.  As far as stage, this is not determined until the pathology report from your lumpectomy.  Now that this is done, and presumably has clean margins and hopefully a negative sentinel node biopsy, your stage can be known.  Do you have an appointment set up with an oncologist and rads onc?  The onc should give you the stage information - but if you have pure DCIS with no invasive component the stage will be 0.  Radiation generally always follows a lumpectomy, exceptions are made for age and comorbidities.  Your rads onc can explain why this is necessary, but it is basically to "clean up" any cells that might remain in the breast after lumpectomy.  Ask your onc about the Tamoxifen - I am assuming you are pre-menopausal, so I would imagine that because you have remaining breast tissue they want to reduce your ongoing risk with medication that blocks estrogen from your breast cells.  The side effects may sound scary, but another breast cancer is likely to be scarier.  Keep in mind that not all side effects happen to everyone taking Tamoxifen.  Good luck to you!

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  • Maudene
    Maudene Member Posts: 3
    edited October 2012

    thank you both for your responses. I had a busy day today and thought I'd share what I learned.

    I saw the Radiologist and you were correct. He explained the Stage and grade (stage 0/grade 1-2). Again, you were right for the reason behind the radiation~to make sure nothing was missed and not allow any undetected random genes to mutate. He allowed me to choose a 4 week or 6 week regimen of which I chose the 6 week based on other medical history.

    I saw the surgeon again. She indicated that the incision looks good, breast tissue looks good. no worries there. Margins were 0.8cm so that is also good. Only one spot of microcalcifications and that was what was removed during lumpectomy.

    I also saw the Med Onc, a very patient, understanding man who listened while I talked, answered my questions and advised against Tamoxifen before I could decline (based on my hesitations with the side effects).

    I then went back to Rad Onc to have my simulation procedure done and will begin Rads next Wednesday.

    Overall, a good day I think. I got the answers I wanted/needed. And feel much better about the next few weeks.I'll admit, I'm exhausted today tho. I suppose I will get used to that in time.

    Yes I have a Nurse Navigator. She calls herself a breast coordinator. I call her a Bra...same thing as a breast coordinator, right? She has been very helpful. However because I live so remotely, there are no support groups available. Resources for my county are limited as well. I've gotten some financial assistance from two very wonderful groups to help defray the cost of fuel and for that, I'm forever grateful. I hope to some day be able to give back in some way, shape or form.

    Thanks again for the input. it was great to hear from someone who's been there already.

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited October 2012

    Your day does sound good!  I am happy that you received answers, it goes a long way toward feeling confident in the plan for treatment.  I am glad that you are healing well and moving forward.  You might want to join up with others who post here and are receiving radiation in the same time period you are - check in "active topics" or under radiation in "all topics" for a group.  It is a nice way to gather info and support each other.

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