First Doctor appt now questions and wondering what to do?

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shellbell1963
shellbell1963 Member Posts: 39
edited June 2014 in Just Diagnosed

I sound probably like a basket case, because this is so hard. Went to my first doctor's appointment today, and am confused, anxious, nervous, apprehensive etc.......

First off I have invasive ductal carcinoma .7 cm and a papilloma measuring approx. the same. I was also given the information of Surgical Grade 3, ER positive, PR positive and HER2+. Doctor recommended lumpectomy with radiation or Mastectomy with either chemo or radiation if lymph nodes are involved.

I am 50 years old and have had endometrial cancer 2 years ago with a total hysterectomy, was told that having endo and breast cancer on the same patient was very rare. My mom had breast cancer 26 years ago at the age of 55 and had a mastectomy with no chemo or radiation. 

I am confused as what to do. I have so many allergies from medicines therefore I am petrified of the medical profession, and scared of the thought of chemo and radiation. I was leaning towards the mastectomy but now a friend who is a nurse suggested a bilateral mastectomy. 

I am beyond despair with worry and thoughts running a million miles through my mind. I just want some thoughts and talk to any of you ladies. Also is the invasive ductal carcinoma a really terrible diagnosis?

Thank you in advance.

Comments

  • Beesie
    Beesie Member Posts: 12,240
    edited January 2014

    Shellbell, 

    Invasive ductal carcinoma is the most common type of breast cancer.  So no, IDC is not really a terrible diagnosis.  But IDC is a very broad umbrella - there are all sorts of different diagnoses within IDC.  Some are not aggressive at all, and others are very aggressive.

    With a 0.7cm tumor, the good news is that you have a small tumor.  But your cancer is also grade 3 and HER2+.  Those two factors mean that it is highly likely that you will require chemo, whatever surgery choice you make.  That's the thing about chemo.  The need for chemo doesn't change if you have a lumpectomy or if you have a mastectomy or if you have a bilateral mastectomy.   So when you make your surgery choice, it's important to understand that.  If it's determined that you would benefit from chemo, that's not going to change if you choose to have a MX or BMX instead of a lumpectomy.

    In fact, current treatment guidelines suggest that chemo and Herceptin be given to patients who have ER+/PR+/HER2+ cancer that is 0.5cm or larger in size. The NCCN guidelines are the ones used by most doctors in the U.S.; see page 76 for the treatment guidelines for your type of diagnosis:   NCCN Guidelines for Patients / Breast Cancer

    At this point, have you only talked to your surgeon?  It might beneficial to also talk to a Medical Oncologist.  Sometimes this discussion doesn't take place until after surgery, but sometimes the initial discussion with the MO takes place prior to surgery.  Your surgeon can advise you on the surgery options, but everything else should come from the MO.  It's the MO who will recommend what, if any, additional treatments will be recommended after surgery, be it radiation, chemo, Herceptin or hormone therapy.  The MO might also be able to advise you about the surgery choice - sometimes if chemo and Herceptin are required, MOs will suggest that the patient not undergo a MX or BMX, at least not initially, because it is a harder surgery with a longer recovery time, and it's important to keep your strength for the chemo and Herceptin treatments.  On the other hand, the MO might agree that a MX or BMX is the best choice for you. So it might be helpful to you to have a first discussion with the MO prior to making your surgery decision. 

    When you are diagnosed with breast cancer, you are thrown into a whole new world, a world that you really don't want to be part of.  It's scary and it's hard.  But you will figure it out, as you learn more about your diagnosis and understand more about the treatment options..  

    (((Hugs)))

  • Kudra
    Kudra Member Posts: 85
    edited January 2014

    ShellBell,

    The only thing I would add would be, you do not have to rush to a decision on your surgery. You could talk to an oncologist first, let yourself digest all this new info and then make a decision. My first doc in all this was a surgeon who just told me I was having surgery in two days and he'd see me at the hospital. 

    No real discussion, no tests beyond mammo and biopsy.

    I am so glad I waited till I had an oncologist that I trusted and knew was listening to me.

    Good luck! I'm so sorry you have to be here, but it's helped me immensely. Love,

    Kudra

  • Susie123
    Susie123 Member Posts: 804
    edited January 2014

    Hi Shellbell, 

    Lumpectomy or mastectomy, either single or bilateral is a personal choice. I feel the same way about it as your nurse friend, probably for the same reason. In the job I worked at all my life, I saw many women who had a new cancer in the "good boob" several years after dealing with the original breast cancer diagnosis in the other breast. That meant having to go through this all over again. I couldn't stand the thought of that so I chose a bilateral mastectomy, even though it was a small, low grade cancer. I knew for me, that was the right choice. Worry and he thoughts of yet another surgery would have driven me crazy. My best to you as you make your decision. Another lady in my neighborhood had a bilateral mastectomy the day before mine who was her2 + and did chemo and herceptin. She did fine too. That was 4 years ago and she's still good.

  • proudtospin
    proudtospin Member Posts: 5,972
    edited January 2014

    I agree not to rush into something without some more checking.  Hate docs who act like you should do all on their time schedule.  A medical oncologist would be helpful, you will need one to work out any chemo or rads anyway so why not chose one now and talk to them to help you with the decision?  Remember also, you can talk to dif ones as the MO will be in your life for a good long time.

    Best of luck and lots of folks here will be in your pocket!

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