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Preparation for possible recurrence

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Msruch View Drop Down
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    Posted: Jul 17 2019 at 10:10pm
Hi, Iím almost through with treatment (completed 16 chemos, surgery) and now in radiation. I didnít have complete response to chemo, so Iím thinking chances of recurrence are high statistically. Iíve gotten treatment through Kaiser. Iím wondering if anyone has followed up at this stage with either MD Anderson or Ucsd. Kaiser will not pay for anything outside of Kaiser, but someone had told me its good to get my foot in the door so that Iím not a new patient in case of recurrence. I had stage IIb tnbc, grade 2, about 3 cm. 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jul 18 2019 at 11:54am
Msruch,

You are asking all the right questions.  I think now is a good time to get your foot in the door for a second opinion.  You are correct, it could take months to get a new patient appointment for a second opinion, especially if you are currently in treatment.  Once you're established, then you're in the system and easier to get in if something should arise.  I did the same thing you are contemplating when I had my recurrence.  I was getting chemo and wasn't sure about radiation options.  While on chemo and knowing there would be a break before radiation started, I arranged for a consult with MD Anderson.  It gave me time for all my paperwork, scans, tests, tumor sample to be sent to MDA prior to the appointment.  That step alone can take weeks trying to get medical records from one institution to another.  I ended up with 3 opinions on my radiation options and I'm so glad I went the extra step.

You mention you didn't have a complete response to chemo.  Have you considered or talked about adding Xeloda after you finish radiation?

From SABCS 2018:

Adding Capecitabine to Adjuvant Therapy Does not Improve Overall Survival in Early TNBC--With One Exception
This study was a phase 3 randomized trial in which one group of patients with early stage TNBC received capecitabine as adjuvant therapy after finishing neoadjuvant chemotherapy and surgery, while the other group got only the neoadjuvant treatment and surgery.. The CREATE-X trial showed no benefit either in disease free survival or overall survival for the patients getting the capecitabine. There was one group, however, for which the results were more promising--patients with the non-basal type of TNBC. That group did have statistically significant improvements in both key measures of the success of the treatment.

Effective treatment for early TNBC is critical as this is primary way to prevent the disease from recurring or spreading to other sites. Researchers are always working on ways to improve the initial treatments that patients receive. Itís also important not to subject patients to side effects from drugs or treatments that are not effective. This study will provide a basis for additional trials with the non-basal TNBC group and help refine the current standard of treatment for all women with TNBC.






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 Msruch Quote  Post ReplyReply Direct Link To This Post Posted: Jul 19 2019 at 8:12pm
Thanks Donna. Is there a particular medical oncologist there that specializes in tnbc besides Stacy Moulder? I havenít been offered anything post radiation and since I have kaiser, everything is self pay. Iím already struggling financially. 

How long after did you have your recurrence? Did you have to pay for treatment at md Anderson?
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Post Options Post Options   Thanks (1) Thanks(1)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jul 21 2019 at 8:51pm
Msruch,

No, I didn't have treatment at MD Anderson.  I went there for a second opinion.  I had treatment in my home town.  My recurrence was found a year after finishing chemo through a PET scan.  I can totally understand the financial burden of cancer care.  Both times I was treated in the city where I live, so it was in-network for insurance purposes.


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 Msruch Quote  Post ReplyReply Direct Link To This Post Posted: Jul 21 2019 at 11:38pm
Any other ways to prevent recurrence that has worked? Cbd? metformin? European mistletoe? 
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Post Options Post Options   Thanks (1) Thanks(1)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Jul 22 2019 at 1:10pm
I see Dr Vicente Valero at MDA, he'd a rockstar of the breast cancer world. And a delightful human as well.
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/16 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 Msruch Quote  Post ReplyReply Direct Link To This Post Posted: Jul 26 2019 at 9:24pm
Whatís the benefit of going to md Anderson for a consult? I still donít get it...Iím almost complete with treatment, the surgery removed the cancer. Is it about using pharmaceuticals not specific for cancer? To learn more about tnbc terrain as they see it? 
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Post Options Post Options   Thanks (1) Thanks(1)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jul 26 2019 at 9:43pm
Msruch,

In all honesty, they probably won't recommend anything different than the standard of treament you've received.  It would be different if we had treatment options to help it from coming back, like the ER+ ladies with Tamoxifen, but we don't.  It would be beneficial to get your foot in the door, become an established patient so that if something comes up, you can easily get in to see a doctor.  Otherwise it can take months to get all your medical records to another institution before they will even schedule an appointment.  This was my experience with second or third opinions.
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 (1) Thanks(1)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Jul 27 2019 at 12:12pm
I went to MD Anderson when I had a recurrencek  because a recurrence after 7 years in the same fully treated breast, with no mutations is rare. Being rare there is no protocol, and you can't do Adriamycin again. Now that I'm a patient there, I can send messages to my doctor there, or get an appointment quickly if I need one.
Both my UT Southwestern & MD Anderson doctors agreed that if I did not get a pathological complete response from chemo, I should do 6 months of Xeloda after surgery. I was planning on it, but got lucky and got the PcR. 
It was the MDA Drs chemo plan that I went with, that got me the PcR, so if I ultimately survive this time MDA probably saved my life. You just don't know what they'll suggest until you take the appointment. But if your local Dr suggests Xeloda, in your position I'd just do it.
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/16 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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