2nd time breast cancer. Need new BS. Dallas, Texas

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  • Shelly74
    Shelly74 Member Posts: 24
    edited March 2016

    Hi Ladies, Dr.Rao is my BS. Have all my docs at UTSW. Love my PS Dr. Jonathan Cheng and MO Dr. Barbara Haley, too. Easy to work with them since they are all aware of my history/have record access. I attended the BC Retreat at Presby last year and enjoyed it...am registered to go again this year. Let me know if any of you are going.

  • woodstock99
    woodstock99 Member Posts: 338
    edited March 2016

    @shelley74 I am registered for the Presbyterian retreat on 3/26. Looking forward to it

  • vbishop
    vbishop Member Posts: 616
    edited March 2016

    For those getting ready to have MX or BMX, you may consider Heal in Comfort shirts. They were designed by a BC survivor living in Austin, Texas. She pitched her idea in Shark tank and teamed up with Damon Johns. Her name is Cherie Matthews.

    Here is the link to the website:

    https://www.healincomfort.com

    I had one and have purchased some for other women in my area. In Austin, the shirts are free from the Breast Cancer Resource Center.

  • monicammoriah
    monicammoriah Member Posts: 14
    edited March 2016

    Hi Balthus--thanks so much for the additional rec.

    I just wanted to update everyone on my experiences. Selecting a doctor is such a personal matter, and everyone has to pick the doctor that is right for them. That said, I do think it is helpful to get insight from others who are looking for the same kinds of providers.

    I guess it's good to provide my diagnosis first--6cm of grade 3 DCIS; I found the mass about 6-8 weeks ago, and decided to look into it when it didn't go away and seemed to get larger. I'm 39. No significant history of BC in my family that I'm aware of. ER+/PR+. For many complicated reasons, I didn't have a doctor I could consult regarding the mass, so the two interviews I had today were my first opportunity to speak with an expert. My background is in research, so I did a lot myself, and came to the conclusion that I would probably need a mastectomy on at least one breast. I was braced for this and was really more interested in the POA that each provider would recommend.

    My first appointment was with DR. Grant, and he had a nice beside manner--was personable--seemed sufficiently concerned. He recommended a mastectomy---obviously no need for radiation, hormone therapy, or chemo with no breast. He suggested genetic testing and offered several options regarding reconstruction. After I left his office (with my team in tow). we were pleased with the visit.

    Fast forward two hours later, and we meet with Dr. Ganaraj. Let me just say that Presby was not my preferred facility, but Dr. Ganaraj was nothing short of AMAZING. Great bedside manner (important, but not at the top of my list), incredibly informative (by, for example, explaining that the measurements on the mammogram might underestimate the calcification/mass/tumor, but will not not overestimate. Or that a mammogram can pick up DCIS, but not usually invasive cancer.) She suggested an MRI on both breasts to try to determine whether any of the DCIS is invasive. She also suggested some methods that might save the breast (not likely, but it was nice to hear options). I'll also add that I had a question for her medical assistant on Friday regarding some previous genetic testing I previously had done and whether it would be sufficient, and she responded immediately.

    I have my appointment with Rao today, and will keep everyone posted.

    Anyway, just thought you would like to hear an update. Sending good thoughts and well wishes to you all.

  • woodstock99
    woodstock99 Member Posts: 338
    edited March 2016

    Just checking in to see if anyone is going to the Retreat at Presbyterian this Saturday that I posted about? Hope everyone is doing well.

  • New-girl
    New-girl Member Posts: 358
    edited April 2016

    I would still love if we all got together sometime.

  • warriorwannabe
    warriorwannabe Member Posts: 66
    edited April 2016

    lets do it!! Im ready!!!

  • woodstock99
    woodstock99 Member Posts: 338
    edited April 2016

    how about sat 5/14 or sun 5/15?

  • warriorwannabe
    warriorwannabe Member Posts: 66
    edited May 2016
  • monicammoriah
    monicammoriah Member Posts: 14
    edited May 2016

    I'm going to try to make it- surgery is on the 17th, so it will depend upon his much I can get done in advance :)

  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited May 2016

    Hi, all -

    My sister lives outside of Dallas and needs a breast specialist. She has dense breasts, a sister with stage II IDC, and possibly a PALB2 mutation, so needs someone who takes her situation seriously and is responsive, very up to date and fairly personable, too.

    She was referred to an Allison Di Pasquale at Texas Breasts Specialists and liked her but has encountered a complete lack of follow through and responsiveness from the staff - the promised order for an MRI hasn't come through, phone calls aren't returned, etc.

    Does anyone have a specialist they would recommend without reservation? I realize that insurance coverage is going to dictate some of her choices but I'd like to be able to give her a few more options. Having gone through cancer with nodal involvemnet myself, I would give just about anything to help her avoid the same situation.

    Thanks for any suggestions.

  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited May 2016

    The High Risk program at UT Southwestern is very good

  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited May 2016
    Thanks SO much, Melissa. Is that a team-based approach or is there someone in particular that you'd recommend? Either way, I'm passing this on to her tonight!
  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited May 2016

    Team based comprehensive clinic, and they are the only NCI Designated Cancer Center in our area.

    http://www.utswmedicine.org/hospitals-clinics/seay...


  • Lunderwood
    Lunderwood Member Posts: 125
    edited May 2016

    Hopeful82014 - I agree with MelissaDallas you should consider UTSW in Dallas. Their team approach has been outstanding. Each department works well each other. Your sister might also want to look into their research programs. I have been on an hormone therapy program for 6 months which is part of a clinical trial very good results and definitely a different approach to the therapy that my first consultation with another doctor (a smaller cancer center) suggested. UTSW is about a 90 minute drive for me but they have worked to coordinate appointments and testing so that I have been able to only take off minimal time from work. I am scheduled for surgery on June 15th and they have worked with my insurance company to be sure everything is approved in advance.

    I will be thinking of you and your sister.

  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited May 2016
    Melissa and Lunderwood - thank you so very much for your helpful input. I really appreciate it, as does my sister. And thank you for your kind thoughts.

    Lunderwood, I did neoadjuvant AIs, also (Femara) and am very glad to have had that demonstration of how well it worked on my particular cancer. I wish more women could have that experience. Good luck with your sx on the 15th - I'll be thinking of you.

    Thanks again.
  • woodstock99
    woodstock99 Member Posts: 338
    edited June 2016

    Ladies just wanted to post this link to free seminar coming up in Addison on 7/8. https://www.eventbrite.com/e/free-breast-cancer-survivors-expo-tickets-22075039036

    The American Association of Breast Care Professionals at this year's 2016 AABCP Mastectomy Summit & Expo will be opening up the Exhibition Hall to Breast Cancer Survivors on Friday morning, July 8th.

    Raising awareness about the mastectomy fitter profession and foster a greater understanding of the products that are available to breast cancer survivors post mastectomy is a core mission of the AABCP

    Come see breast cancer garments, lingerie, hair replacement options, cancer care items, lymphdema sleeve options and breast prosthetics for all levels of surgery and throughout treatment timelines.

    Come visit AnaOno, Tara Dunsmore of Pink Ink Tatoos, Noggins, Wrapped in Love, BlushLife Apparel, Anita International, Nearly Me, Bandeau Distributors and many many, more...

    Tickets are FREE but registration is requestion and available online and at the Door. While not required, all donated proceeds will be given to a local post mastectomy charity.

    WHEN

    Friday, July 8, 2016 from 8:00 AM to 12:00 PM (CDT) - Add to Calendar
    WHERE
    AABCP Mastectomy Summit & Expo - Intercotinental Hotel 15201 Dallas Pkwy, Addison, TX 75001 - View Map
  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited June 2016

    Lunderwood, I hope your surgery went well, pathology contained no unpleasant surprises, and that your recovery is going smoothly. Stay cool!

  • Lunderwood
    Lunderwood Member Posts: 125
    edited June 2016

    Hopeful82014 - Surgery went well, no pain issues. I did have a few issues with nausea due to anesthesia but I worked through them. I was fortunate to only spend one night in the hospital. I will be very glad to get the drain out (was lucky to only have one) it's not painful just somewhat restricting -hopefully early next week. Energy levels aren't quite 100% but I am up to 10 miles on the treadmill each day (walking). I hope I get clearance for a few some outside activities very soon. Today is my surgery followup with BS. I am a bit anxious about the pathology reports. Did your sister find a doctor in the Dallas area? Please tell her we are here if she needs any additional support.

    Balthus - Thank you for sharing the info on the expo. I may try to attend. Will you be there?

  • woodstock99
    woodstock99 Member Posts: 338
    edited June 2016

    Lunderwood - I am hoping to be. My office wis not very far form the hotel so I am planning to head to the expo early and go into work late that morning. I will know for sure sometime that week depending on what's going on at work. Maybe we can meet in the lobby and say. Glad your surgery went well. Who did you end up using at UTSW if you don't mind my asking? I am amazed you are on the treadmill with your drain! It does get better! Thanks.

  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited June 2016
    Lunderwood, I hope you got only good news from your path report today and that the drain will soon be history! It sounds as though you're doing great and I hope it will be smooth sailing from this point on.

    Thanks for asking about my sister. She's tabled dealing with the issue until later this summer; we'll have a LONG talk about this when she's here next week.
  • Lunderwood
    Lunderwood Member Posts: 125
    edited June 2016

    Balthus - My BS is Dr. Marilyn Leitch, PS is Dr. Nicholas Haddock, and MO is Thomas Froehlich. Very pleased with each of them - all very different in personality and perspective but work well as a team.

    Hopeful82014 - I will be thinking of your sister. I self diagnosed my tumor about 12 mos before going to Dr. (long story - both parents died of cancer and I was not a fan of conventional medicine) My sister and husband basically had an intervention and I agreed to seek medical help but at my terms thus I came to be a part of the research program at UTSW. It seems to have worked out in the end. oh path reports were good - clean margins no node involvement. Drain out next week.

    Smile

  • woodstock99
    woodstock99 Member Posts: 338
    edited June 2016

    Lunderwood - my BS is Dr Rao. I did not do recon so no PS. I am switching MO's and am supposed to speak with Dr. Froehlich next week when he is back from vacation about a major issue I had with the MO I saw there 6 months ago after my BMX. If I can help in any way, please reach out.

  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited June 2016
    Lunderwood - I am so glad to hear that your margins and nodes were clear. Thanks for the update. Thanks for sharing the info about your 'Intervention,' too. When you have time, I'd be interested in how you chose UTSW, etc. Hang in there with the drain!

    Have a good weekend everyone.

  • DebHen
    DebHen Member Posts: 16
    edited July 2016

    My breast surgeon is Dr. Marilyn Leitch at UTSW. She is good at what she does and we are trying to overlook her bedside manner.

    My question is for those who have had a Sentinel Node Biopsy at UTSW: I have of course read all the posts about how painful this procedure is, i.e. the injection of the radio tracers. Was that your experience at UTSW?

    I am scheduled to have this done next Friday and talked to the Nuclear Medicine Department today and they have no pain management protocol for this and refuse to discuss it - which is very upsetting to me.

    I'd appreciate some feedback on your experience with this procedure at UTSW.

    Thanks

  • woodstock99
    woodstock99 Member Posts: 338
    edited July 2016

    DebHen - I had SNB at UTSW before my BMX - the morning of not the day before. I did not want to be at Clements 2 days in a row. I sent a message via my chart requesting prescription for the "Emla" cream to use before the procedure and Dr. Rao or her nurse called it into my pharmacy. Things are a bit foggy now 6 months later but I remember that I applied it when I woke up that morning and wrapped my chest with saran wrap. I recall that Nuclear Medicine was not thrilled about it but it's not like they wouldn't do the SNB. I know I have read on various posts on NCO pro's & con's of using the cream. I don't recall the procedure being painful so hard to know if that was due to the cream or not and since i was going into surgery shortly thereafter I was already freaked out. Not sure if I helped or not but wanted to pass along.

  • Lunderwood
    Lunderwood Member Posts: 125
    edited July 2016

    DebHen- Dr. Leitch is also my breast surgeon at UTSW. I agree she is the best even if a bit on the direct side. I always go to my appointments with a list of questions and she does take the time to fully answer and offer explanations. Her staff has also been very good - I ask many questions and use mychart messaging frequently. (at least I have know worries that they all remember me if for no other reason than my many questions.)

    Regarding the SNB, I had some worries too. I had have multiple biopsies prior to surgery so I was worried it was similar in pain levels - definitely not so at all. I had the SNB the day prior to surgery and did not use any prescriptions or wraps prior to the injections. The entire process was not at all painful to me. The technician administers several injections in the breast in the first session. They felt like quick bee stings but it was only a quick fleeting hurt. Several hours later you return to the clinic and they scan for the tracers. I was very relieved that the tech was able to tell me at the time of the scan that they had two good sentinel nodes located so I had one less worry for the next day's surgery.

    Good luck to you and I hope all goes well for you!

    Laurie

  • DebHen
    DebHen Member Posts: 16
    edited July 2016

    Balthus and Lunderwood:

    I can't thank you enough for your quick responses, especially since my pre-op visit for SLNB with Dr. Leitch is today!

    I really can't say at this point what I am going to do. I know I need to have this procedure, but I am terrified of the pain involved with it. I found a study that compares the pain between two different types of injections: Technetium Sulfur Colloid and Technetium Timanocept. The Sulfur Colloid is the most painful of the two and is, of course, the the product that UTSW uses.

    I had a terrible time with stereotactic biopsy, so much so that I had to stop the procedure after only 2 samples instead of the usual 5-6 (this was not done at UTSW, but at Baylor Plano). Thank goodness UTSW uses the radioactive seeds instead the wire for localization and after the initial pain of the lidocaine injection, I was able to tolerate this procedure, but not without tears. My lumpectomy went well and I never took a pain pill. I have a VERY low pain threshold and just do not understand why on top of the stress of having cancer, I have to deal with pain that I think can be lessened.

    I am going to take all my research with me today and drop a copy off at Nuclear Medicine, but I doubt much will change. I am going to ask Dr. Leitch about a PET/CT scan and having the procedure with just the blue dye only - which is given under anesthesia, but again, I doubt she will be comfortable with these options.

    Again, thanks for your replies.

    Debbie

  • HuskerFan
    HuskerFan Member Posts: 85
    edited July 2016

    DebHen, I did not have my BMX at the same place, but when I had the dye injected for my SNB, they applied lidocaine to the area first. All I felt was a quick poke and that's it. Maybe you could request the lidocaine before your procedure.

    ETA....my procedure was at Mayo Clinic in Rochester, MN

  • woodstock99
    woodstock99 Member Posts: 338
    edited July 2016

    DenHen - Dr Phil Evans did all my biopsies at UTSW - 2x stereotactic & 1x MRI - and he was the best. Of all the doctors I saw related to my diagnosis, tests surgery, follow-up, etc he is the only one who gets a A+. He was kind, gentle, eloquent, responsive, etc as were the techs who assisted him. In retrospect, I should send him a thank you note.

    I hope your appt with Dr. Leitch went well today. I started at UTSW in the mid-90's when I had a benign fibroadenoma removed and at the time saw Dr. George Peters who was the head doctor. He too was excellent - brilliant, skilled with a wonderful bedside manner. He had a stroke and retired and Dr. Leitch replaced him some years later.

    I continued to get mammograms there for many years and would see Dr. Leitch but after years of all clear I changed to a facility closer to my office but when I had my bad mammogram last October I immediately contacted UTSW for my biopsy. Dr. Rao had operated on 3 friends in past few years and her beside manner is slightly better than Dr. Leitch so that is why I went with her.

    But I think you are in the best place with best resources.

    I thunk you will do fine with the SNB. Keep us posted.

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