Looking for Dr. Recommendations (Bay Area, CA)

Options
laney64
laney64 Member Posts: 6
edited June 2014 in Triple-Negative Breast Cancer

Hi,

I'm a 48 yo mom of two. I was told yesterday at the consultation with the breast surgeon that I was triple negative.  He said he was unable to give a prognosis or stage until after surgery.  He felt my lymph nodes and while he didn't feel any sort of involvement, it didn't mean that there wasn't any.  The size of the tumor varies: the mammogram has it a 2cm and the ultrasound has it at 1.7cm.  Before surgery occurs, I need to have an MRI because I have very dense breasts.  Also, he wants me to have genetic testing done as well.  So, it seems that I will have to wait about another 2 week before surgery. It's been almost two weeks since the biospy was found positive. 

I'm looking for recommendations for both a surgeon and oncologist.  I live in Sunnyvale, CA.  I would like to find someone who specializes in this type of cancer and who can make me feel hopeful.  The surgeon didn't make me feel that hopeful.  My husband and I left yesterday feeling crushed.  I have felt sick to my stomach since I have found the tumor.  I can't eat and I have lost 12lbs pounds in about 3 weeks.  I feel so anxious and depressed. 

Thanks,

Lisa

· Share on FacebookShare on Twitter

Comments

  • Cowgirl13
    Cowgirl13 Member Posts: 1,936
    edited April 2013

    Lisa, I know exactly how you are feeling.  I was going through this almost exactly 4 years ago.  This is the hardest time when you just find out.  It will get better.  There are lots of wonderful women on this board who will be so helpful.

    You may not want to come to San Francisco for surgery, but I can't say enough about my breast surgeon, Dr. Nima Grissom.  She was just terrific--I thought I would totally freak out but I didn't at all.  I remember leaving her office after the consult and saying to me sister (who went with me) that I feel this is do-able.  She totally calmed me down just by her manner.   I will be forever grateful to her.  And she is a very respected surgeon and is hard to get in to see.

    · Share on FacebookShare on Twitter
  • fifthyear
    fifthyear Member Posts: 225
    edited April 2013

    Lisa,

    Like Cowgirl13 stated, Dr. Nima Grissom sounds awesome, great reviews from many patients. You may want to check out Stanford MDs as well. I live in San Jose, so if you like to have coffee with someone who went through the process before, PM me. I know it is very stressful right now, and the next few weeks until you have all the facts and treatment plan in place. Hang in there, we are here to support you.

    · Share on FacebookShare on Twitter
  • laney64
    laney64 Member Posts: 6
    edited April 2013

    Unfortunately, there is a spot on my lungs. The surgeon said that 99% of the time it is nothing.  However, I'm not feeling very hopeful.  I will find out tomorrow.  So, I will go from being unable to be staged to stage IV in less than a week.

    I wonder what else is out there awaiting to be found.  I feel so sick. I don't know what to do.  I really need to be medicated to get through the day.  I have these visions of only living a few more months.  I can't breathe deeply because I'm so stressed. Also, I'm really afraid to die.  How am I going to ever feel any better or accept all of this?

    · Share on FacebookShare on Twitter
  • fifthyear
    fifthyear Member Posts: 225
    edited April 2013

    I hope until you have the result, take what your surgeon said as face value and get some rest. Once we have cancer, every ache and pain cause concern, but a majority of the time, it turns out to be nothing. Hang in there, Lisa.

    · Share on FacebookShare on Twitter
  • Mollydog
    Mollydog Member Posts: 93
    edited May 2013

    Laney64, first of all, I am very sorry you have to deal with this.  I was diagnosed 10 months into my 5th decade, and I just turned 56. 

    At the beginning, there is SO much we don't know.  It's overwhelming and frightening.  I feel for you.  I would like to suggest you contact a wonderful organization down your way called Breast Cancer Connections - http://bcconnections.org/.  They have SO much to offer.  Check out their website and definitely call them tomorrow.  I know they will be of great comfort.  AND you be sure to come see Dr. Grissom in SF.  She is my BS.  There is no one else like her.

    Take good care.

    · Share on FacebookShare on Twitter
  • MauiGirl43
    MauiGirl43 Member Posts: 3
    edited May 2013

    If its any help Laney, I'm 43 years old, mom of 1 and live in San Jose.  I was diagnosed in March 2013 with stage 1 DCIS and Brca 2 positive (I'm ER+/PR+).  I took my time researching the wealth of excellent doctors here in the Bay Area. 

    I've had 3 opinions from: private doctors in Los Gatos/Campbell, UCSF and Stanford.  I've met 3 different breast surgeons, 3 different plastic surgeons, 3 different gyn onc (for oopherectomy), 3 different breast oncologists, 3 different genetic counselors.  Overkill but it's my body, I really take good care of what goes in and was very interested what each had to say and their approach.

    Those 2 weeks of consults were giving me anxiety (and I'm a passive, calm person!).  A lot of it was orchestrating the appts with EACH of the doctors at 3 different locations AND learning what all the different areas are about.  It's crazy, right?!  What helped me through this was hitting it hard at the gym to shake out the anxiety, listening to calm music and putting in earplugs when I wanted to zone out.  I made sure my husband knew ahead of time and he totally respected that while he kept my 9 yr old busy!

    My decision was Stanford (Stanford Women's Cancer Center) because they were comprehensive as far as educating me ALL my options, explained in great detail the pros/cons of my specific status, very attentive, never rushed me (I spent 1-1/2 to 2 hours with each doctor!), they answered everything on my list of questions, they double checked my biopsy pathology slides w/their own pathologists, and was one step ahead of me. 

    Every specialist at Stanford is all in-house (breast surgeons, oncologists, plastic surgeons, radiation/chemo oncologists, genetics, MRI's, mammograms, radiology, blood work, etc).  Each room has a computer and the work up shows up fairly quickly from one appointment to the next and makes it so much easier for doctors to be prepared.  I found them approachable and friendly, very professional, no hesistations in our consults and very thorough.  The biggest decision that sold me was that they were going to monitor me for everything for the rest of my life (bones, skin, pancreas, colon, etc because Brca 2 positive status means I will always be high-risk and they monitor high-risk patients very closely). Added little tiny perk was I felt like I was checking in at the Ritz Carlton because of the valet, concierge check-in, separate seating areas.  Nice interiors too (sorry, I'm a corporate interior designer so I notice these things)!  And door-to-door travel time from downtown SJ to Stanford was 40 mins (closer for you since you're in Sunnyvale).

    At UCSF, I felt rushed.  They informed me that they are a high-volume comprehensive cancer center and people from all over the country come to see them.  I felt like they didn't take their time to give me their opinions, percentages, pros/cons, etc.  They seemed a bit disorganized.  I kept an open mind with them yet Stanford just blew it away for me.  Door-to-door was 1-1/2 hour travel time for a 9am appt. 

    I've met with Dr. Traina (breast surgeon) in Los Gatos at the very beginning and she was excellent.  Just thorough, informative and easy to talk to!  If I didn't have this darn Brca 2 positive status, I probably would've stayed with her and Dr. Ziedler for plastic surgery.

    My decision is to do a prophylactic bilateral mastectomy with reconstruction (with tissue expanders) and prophylactic oopherectomy.  Just waiting for surgery date in about 6 weeks since I will have all 3 surgeons in one day. 

    I hope by now you've had some progress in the beginning of your journey.  Crossing fingers that you have!!!  I'm more than happy to talk to you on the phone, text messaging or email. Just PM me.  Hang in there.  I too found this the hardest part.  xo

    · Share on FacebookShare on Twitter
  • jwilco
    jwilco Member Posts: 486
    edited May 2013

    I'm sorry you are having to deal with this.  It sounds like you have gotten a lot of good recommendations for doctors close to you.  I just wanted to ditto the recommendation for checking out Breast Cancer Connections - bcconnections.org/. 

    They have so much to offer in the way of support and information.  They are in Palo Alto. 

    · Share on FacebookShare on Twitter

Categories