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2018tnbc View Drop Down
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    Posted: Mar 11 2018 at 1:26pm
Post chemo and surgery. Getting ready for radiation. Looking for a place to find recommendations or lists of folks who specialize in TNBC in the Chicago or Midwest area for a second opinion for post radiation. Any help appreciated.
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Lisa s View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lisa s Quote  Post ReplyReply Direct Link To This Post Posted: Mar 11 2018 at 5:39pm
I go to Loyola Medical Center in Chicago. Love them!
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Any particular Dr that specializes?
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lisa s Quote  Post ReplyReply Direct Link To This Post Posted: Mar 11 2018 at 6:31pm
I see Dr. Robinson who I love. I do believe Dr. Albain heads the dept and is involved with Tnbc research and trials. Dr. Rita Nanda at Univ of Chicago is a t nbc specialist although I have not seen her but know someone who goes to her. If you are at a major hospital pretty much all the treatment protocols are the same. I had chemo lumpectomy and finished radiation in feb. In had a pathological complete response and it seems like there is not much follow up regarding scans etc. I have 3 month appts. And am scheduled for a mammogram at 3 months post treatment
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Mar 11 2018 at 8:03pm
I knew someone who was in a clinical trial with Dr. Rita Nanda and loved her.


Here's an older thread of member recommendations.  



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

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Mar 11 2018 at 10:15pm
That Dr thread is broken for me, can yall pull it up? We should probably ask for updates recommendations - the ones I had on there for Dallas have moved on, I've got new ones tho.

Are you going to need more treatment post radiation, more chemo? Or do you just need a new medical or surgical oncologist for ongoing check-ups?
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/17 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Mar 11 2018 at 10:36pm
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

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Post Options Post Options   Thanks (0) Thanks(0)   Quote 2018tnbc Quote  Post ReplyReply Direct Link To This Post Posted: Mar 11 2018 at 10:39pm
They are suggesting options on treatments post radiation. Want to be more educated about possible choices. Thanks.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Mar 11 2018 at 10:45pm
If you are looking in the midwest area, I'd also recommend Siteman Cancer Center in St. Louis for a second opinion.



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

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lisa s Quote  Post ReplyReply Direct Link To This Post Posted: Apr 03 2018 at 9:55pm
Has any one gone for a 2nd opinion AFTER trestment and surgery?
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Post Options Post Options   Thanks (1) Thanks(1)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Apr 03 2018 at 11:31pm
I know you've done a lot of second guessing on the treatment you've had. This is one of the hardest, scariest times to go thru with cancer: post treatment. Allow me to give You a lil pep talk - an honest one ;)
You had exactly the treatment I and MANY others had and were permanently cured. Even without the wonderful complete response you had, they were permanently cured. Without Carboplatin. And with a lumpectomy and radiation.
I know you see that I had a recurrence 9 years later and I know that seems scary. But let me share what I learned thru going thru this recurrence:
They say we have a higher risk of recurrence in the first two years and that is true - but it's the same cancer that had not been eradicated showing up, NOT a new cancer like I have just had.
They are not talking about recurrence in your breast - the recurrence in the first two years rarely is in the breasts.... That's why the lumpectomy gives you exactly the same chance of recurrence as a mastectomy. Huge long term studies have proven this and it is true. I still believe it because: My recurrence had them treat me like a unicorn. There are no studies, no recommended treatment plan for a brand new tnbc cancer in a fully treated breast. Google it - I searched like a crazy person for the 3 weeks it took to get biopsied, diagnosed and in to see the medical oncologist, where she (and my MD Anderson 2nd opinion dr) confirmed: There's no studies because there's no patients: Unicorn.
Even after what I've been thru I fully support lumpectomy and radiation under the right circumstances. A PCR is a perfect circumstance.
Your complete response means that the chemo you did was exactly right to kill your tumor....think about it. It killed the TUMOR, what are the odds errant cells on their own survived chemo that killed a 2.5 centimeter tumor? That's why your odds of recurrence are lower and odds of long term survival are higher if you get a pcr - the chemo you did kicked your cancers ass _completely_ :-) Carboplatin could not have made it any more dead than it was.
The first time I went thru this I went on antidepressants toward the end of treatment and stayed on them for almost 8 months after. My oncologist suggested it to help with the anxiety and worry the end of treatment causes, as well as I just felt a bit....blue. All that worry makes you sad. She also said all the treatment can effect the chemical balance in your body - mine was the way it thru me into instant menopause. The hormonal shock didn't help my mood one little bit.
Make sure your doctor's know your anxiety, the level of worry you are having, the frequency of these thoughts.
To get back to your original question, what do you want from a second opinion? You have the right to a mastectomy if you want one, but I could write you a book on why I advise against it after radiation. I'd be happy to share my experience with it, on here or via private message or on the phone.
PS: I'm seeing a cancer rehabilitation Dr. next Wednesday, still looking for help with my very messed up chest. I'm searching for answers too, where I'm afraid there might not be any. So no judging here I swear, just dishing out my experience, hoping something might help. Contact me anytime if you'd like a sympathetic ear - Donna, Mainy and Steve were my lifelines thru my last go around, my rocks of reason and reassurance o
Kelly
PS: Congrats on the complete response! I know this isn't how you're feeling but....it warrants a WooHoo!!!
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/17 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lisa s Quote  Post ReplyReply Direct Link To This Post Posted: Apr 03 2018 at 11:54pm
Thank you so much for the pep talk!! It was truly needed. I was thinking the 2nd opinion would be more for info on how to keep the cancer away since my doc says basically there is nothing except checkups. Not sure why I have an issue with this. My son had cancer at age 10 and after 3 years of chemo they only do yearly bloodwork and check up. Blows me away no scans for follow up. He is in college now and doing awesome so maybe there is something to the no scan rule :). I may reach out to you over private message if that is ok
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Post Options Post Options   Thanks (0) Thanks(0)   Quote LakeGirl66 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 04 2018 at 10:44am
Kellyless-
I have been lurking here for about two years. I was diagnosed with tnbc in Oct. 2015. It was stage 2a, 3 cm, no nodes. I had Neoadjuvant AC-T chemo, then a bilateral mastectomy with reconstruction in April 2016. I had a pCR. I want to thank you for your posts. They have been helpful and encouraging. Especially when I have aches and pains and I immediately worry that it is a recurrence. Your posts ease my mind especially when I read things like this from you:
“A PCR is a perfect circumstance.
Your complete response means that the chemo you did was exactly right to kill your tumor....think about it. It killed the TUMOR, what are the odds errant cells on their own survived chemo that killed a 2.5 centimeter tumor? That's why your odds of recurrence are lower and odds of long term survival are higher if you get a pcr - the chemo you did kicked your cancers ass _completely_ :-)”
Thank you, thank you, thank you for people like you who post on these forums, telling your stories to help and give hope.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MamaT Quote  Post ReplyReply Direct Link To This Post Posted: Apr 04 2018 at 11:30am
Lisa, I empathize with how you feel given what your family has been through. My five year-old daughter had cancer 2 and 1/2 years ago, and I was diagnosed with low-risk thyroid cancer the next year. I have wrestled with "what's next?" A pCR is, in my opinion, best case scenario. But I understand your fears. I'm opting for bilateral mastectomy because the affected breast has extensive DCIS, so lumpectomy isn't possible. My breasts are very dense, the DCIS nor IDC showed up on a diagnostic mammogram, just microcalcifications. So the other one is going because of my breast density and the higher risk for any future breast cancer. I have started counseling to deal with my fears. I have been so encouraged by the posts I've read here. It really gives me hope, and I thank God that I've talked with many ladies who are thriving after a TNBC diagnosis.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Apr 05 2018 at 11:41pm
Awww thank you. I've gotten a lot of support here for a long time, a LONG time, lol, it feels like forever since I found that first lump! And out in the real world TNBC feels unknown. Nobody knows the differences we deal with. I was with my oncologist last week and said, "well, we keep meeting every 3 months and it's wonderful to see you...But it's been almost 10 years and y'all still have nothing but scorched earth chemo then a 'see ya, good luck! Call if your bones, liver, brain or lungs start unusually hurting!', TNBC is the abused stepchild of the cancer world." She laughed but agreed with me - frustratingly little has changed.
so I keep coming here, since my real life friends and family just think YAY, you're cured! Let's not think or talk about that C word anymore. Except my husband, I'm the luckiest girl in the world in the husband department. I wish I could give every TNBC patient a clone of my husband to accompany them thru treatment. But since I can't, I'll hang out here and do what I can, while we all wait for that miracle cure - our Herceptin, our Tamoxifen - we'll know first cuz Donna will post it for us   
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/17 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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