TNBC Polls & Surveys - Second Opinion

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Second Opinion

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Category: TNBC Forums
Forum Name: TNBC Polls & Surveys
Forum Description: A place to ask questions and survey the community
URL: http://forum.tnbcfoundation.org/forum_posts.asp?TID=7644
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Topic: Second Opinion

Posted By: dbernard94
Subject: Second Opinion
Date Posted: Dec 22 2010 at 6:40pm

Hello everyone

I really appreciate all the comments on this site. My girlfriend has tnbc and boy has it been a rough ride. Her cancer is still in a treatable stage..it was stage 2...just over 4 cm...no lymph nodes. They removed the tumor and her right breast and she did a few months of chemo. Either they did not get it all and it has spread now, or it came back a few weeks later...not sure which...but now she is going through radiation...cancer cells were found in three lymph nodes. Cancer really sucks on so many different levels. You just can not imagine what a person and their loved ones go through when cancer hits until you have experienced it first hand. We will beat this though...no doubt in my mind.

Well my question is does anybody know of any oncologists that specialize in tnbc and work for Kaiser? I know there are breast cancer specialists who work for Kaiser, but there is a difference...in my mind at least...between somebody that specializes in tnbc and somebody that is a breast cancer specialist. Location does not matter as much...I will get her to the doctor no matter where it is. After her radiation is complete, I want to get a second opinion about the next part of her treatment...just to cover all bases and stay ahead of the cancer. If I can not find somebody in Kaiser I will go outside of Kaiser to find a good oncologist but I thought I would try this route first.

Thanks for your advice and again thanks for all your posts on this site...everybody here has helped both of us tremendously with your stories and advice. We have learned so much from this site...words can not describe how thankful we are for sites like this.

David

Replies:

Posted By: zoomommy2
Date Posted: Dec 22 2010 at 7:02pm

David,

I see Dr. DeSilva at the Rock Creek Clinic in Lafayette. I honestly don't know if he specializes in TNBC, but I suspect not. There isn't that much TNBC around, so he treats all cancers. He is very up to date on treatments and drug trials. He's the clinical type, but his PA is somebody you can pour your heart out to and she will listen forever. I don't know who your girlfriend saw in the past, but Kaiser has lots of oncologists at Rock Creek and Franklin. I am very comfortable with Dr. DeSilva. Please let us know how things are going with her.

Lee in Denver

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dx6/09,stageII,gr3,(L)mastectomy 7/09,ACx4,Taxolx7,Avastin study,gall bladder surgery 1/10,4/11 Stage 4, mets to lung, 4/11 Started Taxotere and Xeloda, 5/11 Taxotere stopped, off Xeloda

Posted By: 123Donna
Date Posted: Dec 22 2010 at 7:59pm

Hi David,

I've recently had a recurrence in an internal mammary node and undergoing treatment. You may want to check out the clinical trials for Triple Negative and take them with you when your girlfriend meets with her oncologist. Mainy posted this in another thread and shows that there are new studies for tnbc becoming available. I'm currently in a clinical trial for Parpi. Please keep us posted.

15 trials coming available from September through today for Triple Negative http://clinicaltrials.gov/ct2/results?term=triple+negative+breast+cancer&recr=&rslt=&type=&cond=&intr=&outc=&lead=&spons=&id=&state1=&cntry1=&state2=&cntry2=&state3=&cntry3=&locn=&gndr=&rcv_s=09%2F01%2F2010&rcv_e=12%2F16%2F2010&lup_s=&lup_e - http://clinicaltrials.gov/ct2/results?term=triple+negative+breast+cancer&recr=&rslt=&type=&cond=&intr=&outc=&lead=&spons=&id=&state1=&cntry1=&state2=&cntry2=&state3=&cntry3=&locn=&gndr=&rcv_s=09%2F01%2F2010&rcv_e=12%2F16%2F2010&lup_s=&lup_e =

Donna

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DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

Posted By: JulesSmith
Date Posted: Dec 27 2010 at 2:22pm

If location isnt an issue, can she go to MD Anderson in Houston Tx?

Posted By: dbernard94
Date Posted: Dec 27 2010 at 7:09pm

Jules~ Yes I can fly her to Houston...that would not be an issue at all. IS MD Anderson pretty good with tnbc?

Donna~ Thank you so much...that link should be quite useful to us. I believe after radiation she is going to do Parp inhibitator...according to her current oncologist... but we are going to talk to somebody else...maybe a couple of second opinions...just to cover all of her bases.

Lee~Thank you...I will look into Dr. Desilva. She has been seeing a Dr. Azar...who I have heard great things about...but I just was not thrilled about how she turned her lose and did not check to see if the cancer was still in her after chemo.

Thanks for your comments. They were very helpful. :)

Posted By: 123Donna
Date Posted: Dec 27 2010 at 7:40pm

David,

MD Anderson has an excellent reputation. There are other NCCN facilities that you might want to check out if location is important for treatment.

Steve posted these recommendations in another thread. Please take a look at it and see if any of these suggestions might be a good fit for you.

http://forum.tnbcfoundation.org/my-wifes-cancer-returned-what-to-do_topic7645_post72410.html?KW=#72410 - http://forum.tnbcfoundation.org/my-wifes-cancer-returned-what-to-do_topic7645_post72410.html?KW=#72410

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DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

Posted By: SagePatientAdvocates
Date Posted: Dec 27 2010 at 8:34pm

Dear David,

the problem may be Kaiser...my experience is that they normally, in situations like this, will not let you go outside their system for a second opinion...you can pay for the opinion on your own but it can get to be expensive especially since many cancer centers want to do their own tests.

I just sent you my contact info...unfortunately my phone is toast...it's an older model blackberry that I like and Verizon is sending me (they no longer stock them in their stores) a new one but I won't have it till wednesday...if you don't email me I will send you some more thoughts via PM and my phone number..

I am happy to help you in anyway I can..let's try to communicate in the next couple of days..one way or another..

all the best,

Steve

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I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates

Posted By: zoomommy2
Date Posted: Dec 27 2010 at 8:44pm

David,

Steve is quite right. Kaiser won't pay for you to see an outside person when they have other oncologists in the system. Some of the oncologists are more aggressive than others. The nurses at Rock Creek told me that Dr. DeSilva was pretty aggressive and I was happy he was! He is all for drug trials. I was in an Avastin one and was happy to do so. It will cost you a fortune to have to pay for things outside the Kaiser system. It may be cost prohibitive. I have no idea how much a second opinion might run. Paying for chemo outside of Kaiser will be almost impossible. I'm praying for good results which ever way you go with your girlfriend.

Lee in Denver

Posted By: SagePatientAdvocates
Date Posted: Dec 27 2010 at 8:46pm

Dear David,

I think it is wonderful that you are trying to help your girlfriend...and I am delighted the site has been helpful to both of you...we have a truly wonderful family here..

all the best,

Steve

Posted By: dbernard94
Date Posted: Jan 05 2011 at 2:45pm

Thank you again for all of your comments and suggestions.

Donna~ As always your posts and suggestions have been so helpful to us. I have gone to both links that you provided and printed them up to help us in the near future..thanks again.

Lee~ Yeah I was not planning on having her treated outside of Kaiser unless it was our only option...that would be just too expensive unfortunately...but I think a second opinion is worth the cost. I have heard they are around a grand roughly...but can be more if they want to run tests...but that is second hand information so I am not sure how accurate. Dr. DeSilva is a person we are going to check into...we might be looking at third opinions as well just to cover all options. I believe the more information you can get the better equipped you can be to fight this stuff. Thank you so much for your information and we will check Dr. DeSilva out. Thank you for your thoughts and prayers. :)

Steve~ Seems like Dr. Anderson has quite the reputation. My girlfriend had heard of him so I am thinking he will be our second or third opinion this Spring. Thank you so much for your help and input. I know Kaiser is against paying for outside medical opinions so we are prepared for that. I just do not want any doubt left in our heads about the next stage of her treatment. I did float you an email asking a couple more questions about getting a second opinion. Thanks again everyone for your help. :)

Posted By: trip2
Date Posted: Jan 05 2011 at 4:05pm

Best of luck and please keep us updated..

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Stage 2 2003
Stage 1 2007
BRCA 1+

Posted By: zoomommy2
Date Posted: Jan 05 2011 at 4:13pm

David,

I think paying for a second opinion outside Kaiser is worth it. I don't know if you'd get the same recommendations or not. I don't know if Kaiser would follow those recommendations over their own if different. You may need to be pushy. Dr. DeSilva is considered pretty aggressive in his treatments by the chemo nurses. Since they told me that, I take it that not all of the Kaiser oncs are. The only thing I've heard about the doctor at Franklin is that her bedside manner is pretty lacking. I don't know anything else. Don't let too much time go by after she finishes radiation if you are getting a 2nd opinion. Let us know how things are going with her.

Lee in Denver

Posted By: JulesSmith
Date Posted: Jan 05 2011 at 4:37pm

What about sending your path reports out to check protocol? I did that with MD Anderson and Duke University. I would think if you send all your reports/tests, they could help you out? Just a thought!

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DX 11/2006, Stage 1 IDC/DCIS, 1.05cm, node neg, 6 rounds ACT (taxotere), 48 rads - 4 years ned and counting!

Posted By: SagePatientAdvocates
Date Posted: Jan 05 2011 at 4:43pm

Dear David,

I am in the process of responding to your email...I got distracted with something else..sorry for delay..

thanks for sending it..

all the best,

Steve

Posted By: EileenF
Date Posted: Jan 26 2011 at 12:36pm

Is anyone aware of a TNBC specialist in the NY-NJ-CT area. I live in NY and while happy with my onc. i do want to get a second opinion with my stage IV re-occurance. Thanks in advance

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7/09:IDC,stg 3,Grade3, pos lymph;chemo ACT;12/09 lumpect n lymp disect;1/10 bilat masect/tis exp; rad cmpltd 4/10; 11/10 stg 4 lungs chest axil mets & parp trial;3/11 IBC diag;

Posted By: JulesSmith
Date Posted: Jan 26 2011 at 12:47pm

Just a thought, would you be able to go to Sloan Kettering Cancer Center? They have locations in Manhattan, Brooklyn,. New Jersey, Long Island and Westchester. I believe they are known to be in the top 2 Cancer Centers in the Country. (MD Anderson being number one).

Julia

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DX 11/2006, Stage 1 IDC/DCIS, 1.05cm, node neg, 6 rounds ACT (taxotere), 48 rads - 4 years ned and counting!

Posted By: 123Donna
Date Posted: Jan 26 2011 at 1:21pm

EileenF,

Send Steve a PM. I believe he's recommended oncs at several facilities in the northeast.

Donna

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DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

Posted By: outnumbered
Date Posted: Jan 26 2011 at 1:43pm

EileenF,

I see Deb Toppmeyer at Cancer Institute of NJ (CINJ is very close to the New Brunswick train station). I did go to Sloan and NY Presbyterian/Cornell and I was less than happy. Non TN-Savvy oncs! However, that may have just been the oncs I saw, not the hospital.

I also saw Dr Winer at Dana Farber in Boston. I'm not sure if he is seeing new patients, but anyone who has trained under him must be wonderful (Dr Toppmeyer did). I actually met someone from Manhattan who goes to see him regularly. She jumps the Acela and is there in a few hours.

Feel free to PM me if you want addl info.

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~Sara

DX @ age 40 6/24/08 Stage 1 Grade 3 BRCA1+ 187delAG

BMX (nipple-areola-sparing) 8/5/08

Redo BMX (remove nipple and areola) w/ Lat Flap 7/6/09

BSO 9/3/09

NED since 08/05/2008

Posted By: EileenF
Date Posted: Jan 28 2011 at 6:44pm

Thanks so much. I will see where I can schedule an appt.

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7/09:IDC,stg 3,Grade3, pos lymph;chemo ACT;12/09 lumpect n lymp disect;1/10 bilat masect/tis exp; rad cmpltd 4/10; 11/10 stg 4 lungs chest axil mets & parp trial;3/11 IBC diag;

Posted By: Blessings
Date Posted: Feb 03 2011 at 11:11am

Removed Post

Posted By: Melissakae
Date Posted: Mar 05 2011 at 4:25pm

Sorry guys I have not been on lately to respond to these posts...Wow Blessings...the story you just told me is exactly how Azar treated my girlfriend...almost word for word....Azar's comments scared her more than the cancer did. She filled her with no hope...asked if she had kids and told her to light some candles....she has not been aggressive at all...and did not do a scan on her either after chemo...we asked what she should do after chemo and Azar's response was go home and grow your hair back...well we went in after some bumps were found a few weeks later and they turned out to be cancer cells...one mammary...a couple lymph nodes...and some on her chest wall...there were a ton in her skin I guess...so now we just did radiation and did another scan...most of the cancer was cleared so the radiation worked quite well... but she now has a couple of spots on her lung and on her spinal cord. She now starts chemo Wednesday and has an appointment the same day with Azar...Tuesday we are hoping to get into University Hospital for a second opinion and more treatment options...I was telling her to keep her appt with Azar but now I am thinking of just going to Kaiser and complaining getting a referal so the insurance will cover it and sticking with University Hospital. Blessings thanks again for sharing that story...I knew my feelings were right about that doctor.

Posted By: zoomommy2
Date Posted: Mar 05 2011 at 5:13pm

Melissakae,

I would definitely file a written complaint to Kaiser about Dr. Azar. I see Dr. DeSilva at Rock Creek Kaiser. They are probably going to tell you that you can transfer your care to another oncologist at Kaiser. Going outside Kaiser to University Hospital may be on your own dime, but may be worth it. They could confirm that your friend's treatment has been appropriate or they may have other suggestions. You would probably have to see Dr. Azar to get her chemo started since the doctor writes for the doseage. No visit means no chemo. You don't have time to sit around deciding what to do, so I'd file the complaint and try to get into University Hospital for a 2nd opinion whether Kaiser pays for it or not. Sorry for your friend's lousy experience with Dr. Azar.

Lee in Denver