Any Northern Virginia ladies on this discussion board?

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  • odie16
    odie16 Member Posts: 1,882
    edited July 2013

    Relocatedtarheel,



    Absolutely join us Saturday. I know it is hard right now but please know each of us has been where you are now and will be with you every step of the way. If you need a shoulder or someone to talk to, PM me...

    Edited to add that I would be good with a lunch near Potomac Mills....



    Karen

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  • relocatedtarheel
    relocatedtarheel Member Posts: 159
    edited July 2013

    Thanks so much. I soooo didn't want to be a member of this club...but am so grateful that you're here. I got very little info from the dr/radiologist today other than invasive ductal poorly differentiated and hormone negative. My dr had an appt set up for me with a breast person for tomorrow before she called. I don't even know what questions to ask her tomorrow...any suggestions? What do I need to find out for sure?

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  • odie16
    odie16 Member Posts: 1,882
    edited July 2013

    I am so sorry you have to join us, I really am.

    As for the appointment tomorrow, you will want to take a small recorder or a friend as you will likely only remember half of what the doctor says. I had lots of questions but mainly you want to know the size and treatment recommendations. Find out what your options are so you can make the best decision for you. You won't know the stage until after surgery...



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  • Cuetang
    Cuetang Member Posts: 575
    edited July 2013

    Relocatedtarheel-- please feel free to come to the lunch! We can be a great shoulder to lean on. As odie16 said, we've all been through it and understand the craptastic emotions and fears that exist and are here for you! (Hugs)



    I'm also up for a future lunch in Potomac Mills as well (though someone may have to drag my rear end out of that outlet mall! Teehee)...

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  • LuvSnow
    LuvSnow Member Posts: 229
    edited March 2014

    Relocatedtarheel --- a big cyber hug.  Not a club you want to join, I know, but although each of our journeys are unique, the ladies here can all relate on some level.  I think for me, the NOT knowing was worse than the definitive DX. 

    I won't be able to make it to lunch Saturday, but really hope to make it in the future. 

    Cuetang ---I can't guarantee I will be any help dragging you out of the mall...but I will be there for moral support.   Laughing 

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  • relocatedtarheel
    relocatedtarheel Member Posts: 159
    edited July 2013

    Thank you all so much. I picked up my film this morning for my afternoon appointment with Dr Sebastian. I hope I like her. I also got a copy of my pathology report and from what I can see it isn't good. I'm a triple negative...so chemo is a definite and I just have to hope it hasn't already spread.

    I told the first few folks yesterday...still haven't told my sons (21 and 24 but who are still finishing school and living here) because I don't have anything to tell them yet. After this afternoon at least I'll have a 'next step' and will probably tell them then.  I have been up here a few years but don't really have friends here...they're all in NC. I called my best friend yesterday and she and my other best friend (one is  a nurse, the other a Phd in counseling LOL) are coming up Friday night to hang out. They're freaking out but are being really supportive and cool and I'm so thankful for them.

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  • relocatedtarheel
    relocatedtarheel Member Posts: 159
    edited July 2013

    also-I think Dr Sebastian is a breast surgeon? Where/when/how do I find an oncologist? Who is 'in charge' of my plan...how do I know which one is any good? And are there oncologists who just specialize in triple negative treatment? Help?

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  • mary625
    mary625 Member Posts: 1,056
    edited July 2013

    Hi there. Dr. Sebastian is a breast surgeon, I believe. She will give you some names/cards of some oncologists. At least that's what her partner did for me. The main one is probably going to be Anne Favret or Dr. Denduluri. You can search here for people's comments on Dr. Favret. My co-worker goes to Denduluri and likes her, but she never had to have chemo as she is a Stage 0 DCIS! The oncologist should be "in charge'" of your plan and work closely with the surgeon. As far as what to look for in an oncologist, I would say that you want someone you feel comfortable with and trust. Someone whom you trust is going to listen to you when you have a problem or complaint and respond accordingly, not leaving you hanging to see if it gets better. I'd ask a lot about who you will speak to when you call in, how quickly they will respond, etc. The staff, especially the oncology nurses, are going to be just as important as the doctor. They may also talk to you about what clinical trials that they have available.



    There is also a great resource I highly recommend called The Life With Cancer Center which is near route 50 and the Beltway. Go on their website and see what classes they have to offer. I've been really happy with everything I attended there, and it's all free except for massage which is $50 for more than 60 minutes' massage. They have classes like intro to chemo, as well as all sort of yoga and meditation. You can also call there and talk to an oncology nurse, as well as get into a support group.



    All oncologists should have dealt with triple negative.



    Hope this helps.



    Regarding luncheons, I'm game for Potomac Mills. I am currently in Europe so I won't be there this Saturday.

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  • Cuetang
    Cuetang Member Posts: 575
    edited July 2013

    Relocatedtarheel-- like Mary625 says, you breast surgeon will most likely have recommendations for oncologists. I recall another member (can't remember which one) recently went to Dr. Denduluri and liked them a lot and had chemo with them. You could probably search these boards for the names as mary625 suggested. I would recommend getting at least two names for oncologists, as that person will be driving your treatment plan. All these oncologists can deal with triple negative patients. PeggySull and placid44 are great and are triple negatives as well and maybe can chime in with advice? While I didn't have my treatment in a comprehensive NCI center like Georgetown, I liked how my breast surgeon, oncologist, plastic surgeon, and other folks like the radiologic oncologist worked close together as a team to find out the treatment plan that best suited my needs.



    Mary625--nice! Have fun in Europe! :)
    momoffivekids-- thanks for the moral support (heh)

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  • McKatherine
    McKatherine Member Posts: 300
    edited July 2013

    So sorry to hear tarheel!

    Unless you go into DC, your choices for a medical oncologist will be someone with Virginia Cancer Specialists. They have different doctors at their different locations (with most seeing patients in at least two of their locations). I love Dr. Favret - but I think you have to meet with the MOs, then go with who you are most comfortable with. There are other surgeons out there (the three at the INOVA group - Dr. Bruce is mine), though. I've heard wonderful things about the two surgeons at VaHospitalCenter - but think the drive back and forth to there would have gotten to me. :)



    I'm still not allowed to drive, so not sure if I can make it Saturday, but feel free to PM me and you can come over for a cup of tea or something if you need to chat before Saturday!



    Hugs!

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  • coryja
    coryja Member Posts: 13
    edited July 2013

    Hello all Laughing

    I hope that it is fine if I ask a question on this board- I do not have a diagnoses and the odds are in my favour that nothing will show up any time soon- but as I wait to get my biopsy and then the results, I am just trying to fill in all the answers to my 'what if's'. That way- if the news is bad, I already have some answers and do not need to research them when I may not be in the right frame of mind.

    My search feature is not working so forgive me if this is already discussed on this thread-

    Has anyone received care at Fort Belvoir? Thoughts and opinions about it would be great from any that have or know those who have.

    I have been wanting to switch myself and my kids to TricareStandard for awhile now (actually was going to be doing this next month)- but if Fort Belvoir offers good care for possible BC- then I want to wait and see what my results are 1st.  If the care they give is sub-par, then I may switch as originally planned.

    Thanks to any who can help with this.

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  • relocatedtarheel
    relocatedtarheel Member Posts: 159
    edited July 2013

    Thanks McKatherine. I'm going to Raleigh this weekend to have a pow wow with my 2 best friends. I loved Dr Sebastian at Virginia Hospital and she's recommended a PS that I'm meeting in a week and a half. I hate that I won't make this luncheon but will definitely touch base when I get back.

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  • placid44
    placid44 Member Posts: 497
    edited July 2013

    Relocated,



    I am triple negative and had lots of chemo, as well as bilateral mastectomy and radiation. Feel free to PM me anytime. I used Inova for most of my doctors, along with a plastic surgeon from Georgetown.



    Also I've written up some local info and recommendations and my experience with treatment at beltwaybreastcancer.blogspot.com if you want to check it out. (non-commercial - it's just to try to help those just diagnosed).

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  • placid44
    placid44 Member Posts: 497
    edited July 2013

    BTW I attended the first lunch. I can't attend this month, but hope/plan to in the future.

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  • relocatedtarheel
    relocatedtarheel Member Posts: 159
    edited July 2013

    Some of you have had chemo first, then your surgery. My dr told me i had those options and both had equal success rates. What led to your decisions? And are you pleased in hindsight that you chose that way? My plan now is surgery, DIEP, then the chemo.

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  • McKatherine
    McKatherine Member Posts: 300
    edited July 2013

    Coryja - no personal experience here - but it looks like they offer radiation oncology services, and I read an article from the base paper from 2012 talking about once weekly clinics where bc patients come to have their care planned. I get the feeling, though, that they still do most of the care at Bethesda.

    Hope someone comes along who can answer specifically! We have a ton of military neighbors, so I'll ask around, too. I encountered a few former military or spouses during treatment who were using the same docs as me, but I didn't ask why. :)

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  • placid44
    placid44 Member Posts: 497
    edited July 2013

    Relocated,



    I started chemo right away in order to get to work on any cells that may be circulating in my body. I had an aggressive tumor/high proliferation rate. My breast surgeon told me I should start right away because it can take a while to get surgery organized, and then recover from. My onc also said to do chemo first.



    I am glad I did it that way, but others who did it after may be glad about their order, too. It was stressful to still have the tumor during chemo - they monitored by clinical exam and once by MRI to see whether it was shrinking/chemo was working. If it had not responded at all/shrunk at all, then they would have switched to a different chemo. If surgery is done first, you don't know whether the chemo is being effective against your particular cancer.



    My non-doctor's opinion was that chemo first might help prevent metastasis. They've only been offering chemo first for a few years, so it doesn't seem they have enough long term data to say that it has no survival benefit. Again, just my view.

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  • placid44
    placid44 Member Posts: 497
    edited July 2013

    Relocated,



    Here is a link to another thread on the same question.



    http://community.breastcancer.org/forum/72/topic/805775



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  • PeggySull
    PeggySull Member Posts: 686
    edited July 2013

    Luncheon reservation: For the six of us going to lunch tomorrow, reservations have been made under the name of Peggy S. for 12:30 at Jackson's Restaurant, Reston Town Center. Address is 11927 Democracy Drive, Reston, VA 11927. Phone: 703-437-0800.



    See you there!



    Peggy

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  • Kate329
    Kate329 Member Posts: 6
    edited July 2013

    Hi All,

    I'm 30 years old and I live in Herndon. I'm looking for any help/support I can get. I have had bilateral fibrocystic disease for 10 years now. After two lympectomies (in 2003 and 2005), I've gotten no relief. The cysts returned and brought some friends along with them. I'm happy to report all are benign according to today's 3D mammogram and ultrasound. I am very grateful it is not BC. However, due to the symptoms I've had over the past several months and b/c I've exhausted all the possible "treatments" that I know of, my doc is recommending a bilateral masctecomy with reconstructive surgery. 

    My symptoms include deep aching, sharp pains, referred shoulder/arm pain, armpit pain, armpit itching and lack of sleep due to all of the above. 

    Is it too extreme to have this surgery since I don't have breast cancer? (My grandmother had BC post-menopausal and my mom's first cousin has had BC several times pre-menopausal...so I do have somewhat of a family history. My grandmother had told me that her grandmother also had it, which makes me nervous b/c it may skip a generation).   

    Any recommendations or suggestions? I'm going back to see the doc next week to discuss the negative test results. He will likely refer me to a breast specialist and plastic surgeon. Is there anyone in this area that any of you would specifically recommend? 

    I'd appreciate any help you can provide. My husband is surprisingly not empathetic at all (his mother died from BC when he was 8 years old) and I feel like I have nowhere to turn. 

    Thanks in advance, ladies!

    ~Kate 

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  • Cuetang
    Cuetang Member Posts: 575
    edited July 2013

    Kate-- have you had any genetic testing done given your family history? I'm glad its not BC. Ive seen many ladies I've seen on this board that have prophylactic mastectomies due to family history. It's a matter of whether or not you're comfortable with that decision. Additionally you will have to consider what type of reconstruction you want, for instance implants or a surgery that uses your own tissue such as the DIEP or sGAP. I'm in Reston, and I ended up going to Dr. Hernan Vargas as my breast surgeon. he has an office at Inova Fair Oaks. Your plastic surgeon will likely depend on the type of reconstruction you choose to have, if you elect to have the surgery. Whichever breast surgeon you choose will likely have a group of plastic surgeons that they recommend and work with closely. Hope this helps! Feel free to PM me if you have any questions.

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  • MoodyMoo
    MoodyMoo Member Posts: 30
    edited July 2013

    Hi Kate...I too live in Reston, and have done quite a bit of research lately on some ideas for treatment, given that my diagnoses run the gamut of high risk markers.  I couldn't stay on Tamoxifen, and recently met with two different breast surgeons to brainstorm some additional options, which included all things from routine monitoring, to a BMX.  I'm trying to settle on something in the middle...just not entirely sure yet what that might be.  Same offer as Cuetang...send me a private message if you have any questions, or just want someone to chat with!

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  • Kate329
    Kate329 Member Posts: 6
    edited July 2013

    Cuetang, thanks for the advice. I haven't had any genetic testing done yet. It's going to be an uphill battle trying to get my insurance company to cover the cost of testing, surgery and reconstruction. Even though I have a family history, according to my insurance company, I'm not high risk b/c my grandmother's BC was post-menopausal.



    It's all very frustrating, but my doc ensured me he will build a case to get as much coverage as possible. To make matters worse, my former surgeon in NJ may not have my medical records b/c the office doesn't hold onto them for that long (haven't had surgery since 2005). That will make building a case much more difficult. In the very least, I will get my old op reports from the hospital where I had the surgery so I have something to support my case.



    MoodyMoo, I've also done much research lately as I weigh my options. If I do decide to go through with the BMX (which I'm leaning toward given my dense tissue, fibrocystic changes and fam history), I'd prefer immediate reconstruction with implants (with allograft if I can find a local surgeon who does it) versus a tram or lat flap. I'm rather thin so I don't have the necessary excess tissue for the tram flap and I want to avoid involving other muscles, if possible, to ease my recovery so I'd rather avoid the latissimus dorsi flap as well.



    Ladies, thank you all for your support. I'm very grateful to have found you! :)

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  • mary625
    mary625 Member Posts: 1,056
    edited July 2013

    I highly recommend my surgeon, Dr. Elizabeth Feldman, curretnly affiliated with Reston Hospital. When I saw her, she was at Georgetown, but I've followed her. She is a straight shooter, and she will give you her honest opinion. She had recommended me to Dr. Nabadedian (sp?) as a plastic surgeon who is the best in the area. However, I've not yet had recon. If I do, I will most likely go to New Orleans as do so many women here in this forum. In NOLA, they use fatty tissue from the hip so that slimmer women can avoid using muscle and two surgeons will be working together. I hope these recommendations help.

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  • Kate329
    Kate329 Member Posts: 6
    edited July 2013

    Thanks so much, Mary! Has anyone here had recon locally? Unfortunately, I'm a full-time student so I'm limited to what/who my insurance covers and can't afford to fly elsewhere or rack up additional costs.

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  • placid44
    placid44 Member Posts: 497
    edited July 2013

    I am using Nahabedian and I am happy. So fr I have the tissue expanders, both sides. Exchange surgery will be at Thanksgiving.

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  • Kate329
    Kate329 Member Posts: 6
    edited July 2013

    Mary, I just looked up NOLA. Thank you, thank you, thank you! I had no idea such a wonderful surgery center existed. It looks like this place is the best of the best.



    Again, thank you from the bottom of my heart! I've been so overwhelmed and emotional over the past two days and it's so wonderful having a forum of ladies for support. :)

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  • McKatherine
    McKatherine Member Posts: 300
    edited July 2013

    Kate - my plastic surgeon is Victoria Suh -I love her, and it seems like she does lots of implant reconstructions (that's what I'm doing. Have my tissue expanders now). PM me and I can send you the contact info for her billing person. She helped me work through the insurance stuff. :)

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  • odie16
    odie16 Member Posts: 1,882
    edited July 2013

    Had a great time at lunch today. Awesome group of ladies. For those unable to join us,I hope you can join us for the next luncheon. Details to follow later in the week.

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  • dessert1st
    dessert1st Member Posts: 190
    edited July 2013

    Mckatherine I have Dr Suh Too! She is wonderful as is her Staff!

    Kate, we are here for what ever support you need!

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