need to get educated

Options
Csalazar
Csalazar Member Posts: 7
edited September 2015 in Just Diagnosed

Hello all, I unfortunately have just joined this forum. I see plenty of information available here and support which is a relief. I just relocated to Connecticut from San Diego. I was diagnosed here in Connecticut.

I am going to see my surgeon tomorrow in Enfiekld/St Francias medical system. I see I need to ask a myriad of questions and get an understanding of all the abbreviations. it's a bit overwhelming. I will be taking notes on the questions I need to ask so I can walk away with at least some idea of what I'm dealing with and what I need to think about.

I will be seeking a 2nd opinion and see that the Massachusetts Gen Hospital is highly recommended. Any thoughts? Any words of advice?

· Share on FacebookShare on Twitter

Comments

  • Moderators
    Moderators Member Posts: 25,912
    edited August 2015

    Dear Csalazar, Welcome to the community. We are sorry to hear of your recent diagnosis but glad that you decided to reach out here where there is so much support and information. While you are waiting to hear from others, we are sending you a few links. This link is to another topic on the boards bout US Cancer Centers which lists Mass General among the top 10. You can also use the blue tool bar to your left and select the search key. From there you can type in Massachusetts General and see other posts that contain that topic. Here is a link to questions to ask your Surgeon. Good Luck and keep us posted. The Mods

    · Share on FacebookShare on Twitter
  • Csalazar
    Csalazar Member Posts: 7
    edited August 2015

    Thank you soomuch for guiding me through this website and where to find answers.

    Csalazar

    · Share on FacebookShare on Twitter
  • solfeo
    solfeo Member Posts: 838
    edited August 2015

    Hi Csalazar, and welcome! I have also only heard good things about MGH, for pretty much everything, not just cancer. You will be in good hands.

    There are not a lot of resources for support where I live and I have found these forums to be a tremendous help in every way. It is very overwhelming at first, but having people you can ask who have been there, and usually getting a variety of answers fairly quickly makes it that much easier. In fact, the most important question I asked my oncologist, that ended up determining the order of my treatments, was suggested to me by a member of these boards.

    I was diagnosed less than a month ago, and my cancer is still not staged and graded because the surgery has been delayed for various reasons. I don't have a lot of advice to offer at this point, but just wanted you to know someone is out here listening who knows how you feel right now.

    · Share on FacebookShare on Twitter
  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited August 2015

    Hello, Csalazar. I'm glad you found us. If you would like to say what you know so far, and give some details about your diagnosis, perhaps we would be better able to offer suggestions. If you can take someone with you to your appointment to help take notes, that can be helpful.

    · Share on FacebookShare on Twitter
  • Csalazar
    Csalazar Member Posts: 7
    edited August 2015

    thank you Solfeo and Shetland pony. This is my 1st appt with the surgeon today after "the phone call" telling me my results were positive; hence I'm unable to share any details.

    I do greatly appreciate the candor and support here. My loving husband is very supportive but we just relocated from CA and so 3,000 miles of separation from my family is tough. I have not shared with them my diagnosed to avoid questions I am unable up answer. I will possibly tell them today.

    Thank you for listening and bring available yo sneer questions.

    · Share on FacebookShare on Twitter
  • Csalazar
    Csalazar Member Posts: 7
    edited August 2015

    I saw the surgeon today at St Francus and there are Her2 cells in my pathology report. So no lymph nodes infected that they know of but they are planning to ck that when I'm getting surgery. It's the usual question mastectomy vs lumpectomy. (Strsnge sounding words to me still) I need to do research on this.

    Recommended medications to shrink lump followed by chemo followed by surgery followed by radiation. It sounds like a king road. 1 ur is the spproximate time they stated. I was not prepared for the timeline.

    We are getting a second opinion. We are getting a referral to Dana Farber hospital which is on the U.S. news list.

    Any advice??

    · Share on FacebookShare on Twitter
  • Tresjoli2
    Tresjoli2 Member Posts: 868
    edited August 2015

    I am being treated by beth isreal deaconess here in MA. Dana Farber is here too. Good luck with your choices

    · Share on FacebookShare on Twitter
  • 614
    614 Member Posts: 851
    edited August 2015


    The hospitals where you are are wonderful.  I have heard fantastice stories about Dana Farber.  Good luck with your diagnosis and treatment.  I am sending positive vibes to you.

    · Share on FacebookShare on Twitter
  • LivingThis
    LivingThis Member Posts: 38
    edited September 2015

    Should I have a second opinion?

    I have invasive ductal carcinoma with DCIS...weak ER+ (only 40% expression; 1+ intensity; score 4/8), PR negative, HER2 negative.... so I have been told I am essentialy "triple negative" and chemo is recommended. I am worried about potential side effects but everything I read about triple negative suggests chemo and there doesn't seem to be a lot of choices other than the 2 most common regiments. (AC + or - T and CT). I have been very impressed by both my highly recommended breast surgeon (scheduled for BCT on 10/5) and my highly recommended medical oncologist (just met her for first time yesterday) but a friend of mine is recommending I go for a second opinion at someplace like Sloan Kettering or Dana Farber...before I agree to start chemo. I am worried about that possibly delaying the chemo. Should I seek a second opinion? How do I decide where to go (DF or Sloan - I live within 2.5 hours of both) and what doctor to see if I do go to one of those places? Every decision seems so overwhelming at this point. Part of me just wants to power through this and get it behind me. .

    · Share on FacebookShare on Twitter
  • LivingThis
    LivingThis Member Posts: 38
    edited September 2015

    I am replying to my own post here - is that unusual? Is it bad etiquette? Anyway...here's what i have decided...I will overcome my sluggishness and desire to passively take the path of least effort. I will see my local oncologist one week after surgery and then make an appointment at Memorial Sloan Kettering for a second opinion. It is a darned reasonable thing to do before starting chemo. It is strange how every little decision suddenly seems so hard. I am known as a decisive person usually.

    · Share on FacebookShare on Twitter
  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited September 2015

    Yes, but we get worn out with all the high-stakes decision making. I think it is always wise to get a second opinion from a major cancer center. Why not get that appointment in the works even before you see your local doctor? It might take them a while to get you in, and for you to collect your records and imaging.

    · Share on FacebookShare on Twitter
  • LivingThis
    LivingThis Member Posts: 38
    edited September 2015

    Thanks for the suggestion ShetlandPony. I will do that. You are so right about the high-stakes decision making. Csalazar - we have both decided to get a second opinion and I think that is a good idea. I just informed my mother and sisters about my diagnosis last week. I minimized it as much as possible. I have friends that I can be more open with and express fears and of course this site is a great place to connect with women who really know what this experience is like. wishing you the best.

    · Share on FacebookShare on Twitter

Categories