Just Dx'd - Does this sound right?
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Topic: Just Dx'd - Does this sound right?
Posted By: Zanne
Subject: Just Dx'd - Does this sound right?
Date Posted: Feb 01 2014 at 1:16am
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Hello all, so very glad to have found you.
Was dx'd on Monday evening after a mammogram, ultrasound, & two biopsies the previous Wednesday. Apparently I have two tumors and lymph node involvement - it was a sizable lump under my arm that brought me in for the mammogram. Later in the week the tumors were found to be TNBC. Thankfully the CT scan they gave me showed no organs affected at this time.
What the docs are planning for me is this:
BRCA genetic testing - did the blood test today, will have results in a few weeks. I don't think I'm at super high risk - age 42, only relative with BC is maternal grandmother, and mom, aunt & two cousins have no cancer whatsoever - but we shall see.
Lumpectomy next Tuesday. They wanted to do this ASAP. They think they can do it as a lumpectomy due to the location & size of the tumors in the same quadrant, each about 2.3 cm. There'll be the...axillary...armpit surgery at the time as well, to take out & analyze the lump there. They told me there's no real difference in long-term survival for lumpectomy vs. mastectomy with TNBC.
Chemotherapy - I have no details on this as yet as apparently they're waiting for the pathology report after surgery. But I'm assuming it's coming up soon. It's been mentioned several times.
Radiation - same as above, only that they said it'll likely follow chemo.
Does this sound right? I'm reading quite a bit here about neoadjuvant chemo, but my docs seemed more eager to get the tumor out & start chemo ASAP. I'm also a little concerned about the BRCA test coming back positive after only having had a lumpectomy. I mentioned this to the surgeons as well and again, they seemed relatively unconcerned by this possibility, saying that there could be local recurrence either way.
Thanks in advance for sharing your thoughts with me! Wishing all of you the best.
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Replies:
Posted By: mainsailset
Date Posted: Feb 01 2014 at 10:36am
I don't know where your team is located, but I see you're in SF area. It NEVER hurts to get a 2nd opinion and at the very least, even if that opinion agrees 100%, you as a new Tneg patient will learn something that will help you navigate.
With Tneg, time is always of the essence when it comes to getting treatment but there are options. For me, an option was a Clinical Trial and I will always believe that it saved my life. I discovered that as a trial patient I was monitored heavily, more so than someone who is not on a trial, I'll assume that was because the trial protocols laid out markers (CT's, MRI, bloodwork) that was not included in a Standard of Practice. Nowadays, there are a great many trials available for Tneg. It is worth asking which trials are available to you. In that regard not all oncologists have access to all of the trials in the pipeline. For this reason, if you get a 2nd opinion you may find that the 2nd clinic has access to different trials that may fit your situation better.
Proximity of a clinic to you home may or may not be an issue for you but it's worth consideration since you will find yourself spending a lot of time during treatment at the facility and family members will be involved in driving, visiting, etc. My clinic also had a terrific mini 7 bed hotel for hospital patients that only cost $15 a night, it was perfect for those nights when weather or something else made travelling home problematic.
I'm so glad you found us, times like this it's good to remember to breathe, but we'll do everything we can to help you through this.
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dx 7/08 TN 14x6.5x5.5 cm tumor
3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Posted By: SagePatientAdvocates
Date Posted: Feb 01 2014 at 10:44am
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Dear Zanne,
Welcome to our TNBC Foundation family and sorry you have need to be here.
There is a major difference of opinion regarding neo-adjuvant treatment and immediate surgery in cases like yours.
As mainsailset wrote you might want to consider a second opinion.
I am a volunteer patient advocate and I am going to send you my contact information. I am not a medical professional and I can't tell you what to do but I can help you, if you like, get a second opinion.
Whatever you decide, good luck to you.
warmly,
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
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Posted By: 123Donna
Date Posted: Feb 01 2014 at 10:52am
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Zanne,
So glad you found us too! I think Mainy and Steve have offered some great advice. If there was one thing I wish I did differently when diagnosed was to get a 2nd opinion. There seems to be a trend today with neoadjuvant therapy. Are you close to USCF? Dr. Hope Rugo is knowledgeable about TNBC.
http://www.ucsfhealth.org/hope.rugo" rel="nofollow - http://www.ucsfhealth.org/hope.rugo
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
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Posted By: Zanne
Date Posted: Feb 01 2014 at 1:11pm
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Gah, I forgot to add that the confounding factor re: getting a second opinion is that I am with Kaiser. I know I can see someone else through Kaiser, but it's still Kaiser. (Also time seems to be pressing on me pretty hard since they seemed so hot to be getting me in Tuesday). The way they do it is that they have a "tumor board" that meets with the surgical oncologist, medical oncologist, etc so they have all conferred on this. I feel...weird? Out of my depth? I don't know. This is all happening so damn fast. It's paralyzing.
I see that UCSF (which is close by) is a cancer specialty center, but how would I get in there?
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dx 1/28/14: TNBC, 2 tumors ~2 cm each, & 8 of 13 lymph nodes positive
Lumpectomy/Re-excision; ALND
getting ready to start six months' chemo
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Posted By: 123Donna
Date Posted: Feb 01 2014 at 1:34pm
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Zanne,
Please talk to Steve, he's a patient advocate and has helped so many of us. He has contacts and may be able to help you get in for a second opinion appointment sooner than later. UCSF is a top notch cancer center.
I just looked at UCSF and it contracts with Kaiser so that should be good news regarding your insurance plan.
From my experience, most cancer centers review their cases through a tumor board, which is a very common practice. Still you may get differing treatment opinions from one center to another. That's why it's really good to get more than one treatment opinion when diagnosed. I'm not sure why the trend is towards neoadjuvant chemo instead of surgery, then chemo. One train of thought is that they can see if the tumor is responding to chemo whereas if they remove it, they really don't know if the chemo is effective or not and if there are any cells remaining whether they will respond to adjuvant chemo. With neoadjuvant, they have something to measure.
I think Steve may have sent you his contact information through a private message. Please talk to him.
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
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Posted By: Duchess13
Date Posted: Feb 01 2014 at 4:03pm
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Please try and get a second opinion. I also had a lump under my arm, two tumors in my left breast (one large and one small), lymph node involvement and mammory glands. I went to Methodist in Houston and participated in a clinical trial. I also agree that it probably saved my life. I have been NED going on 20 months. I received Cisplatin and Taxol weekly and Everolimus daily for 12 weeks. Then a mastectomy and 13 lymph nodes removed. Finally 4 doses of Adriamycin and Cytoxan every two weeks. When they did my mastecomy the small tumer was gone and minimal residual of the larger tumor. One lymph node showed signs of cancer and ther others were clear. The tumor under my arm was gone. My oncologist assured me not to worry if there was any cancer left because I would be getting the AC after surgery. I really think neoadjuvent chemo and the platinum drugs are integral to beating TNBC. Please be an advacote for yourself and go after this cancer with everything you've got in you. Once you have a game plan, you will be surprised how strong you are !! Christina
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Posted By: Lee21
Date Posted: Feb 01 2014 at 4:19pm
UCSF is the lead institution for the ISPY-2 trial:
http://www.clinicaltrials.gov/ct2/show/NCT01042379?term=spy-2&rank=1" rel="nofollow - http://www.clinicaltrials.gov/ct2/show/NCT01042379?term=spy-2&rank=1
This is a neoadjuvant trial that tests different new drugs in combination with standard of care treatment. Highly recommend you look into it.
You don't want to wait too long to initiate treatment but it is not an emergency that you start right away.
And you are right to get the BRCA test results back to decide on type of surgery although you can have follow up BMX after a lumpectomy if the BRCA test comes back positive.
When I was first diagnosed, they wanted to sign me up for a lumpectomy ASAP but I declined so I can get a second opinion (as it turns out, at UCSF even though I live in Michigan) and decided to change to neoadjuvant chemo.
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12/9/11 @59,IDC,grade3, TNBC,3cm(MRI),SLNB0,stage IIA, BRCA1 variant
1/30/12 DD AC-T, 6/7/12 Lumpectomy, ypT1b(0.8 cm), 7/9/12 Rads x 30
11/9/12, clinical trial cisplatin/rucaparib, cisplatin-only arm
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Posted By: Kellyless
Date Posted: Feb 03 2014 at 1:35am
it was a second opinion that saved my life, don't be pressured to do ANYTHING without one. A friend of mine went to UCSF for her 2nd opinion,she too was grateful for it and went with them for care. PM Steve for advice to get it done quickly. It's important!!!
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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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Posted By: pneb
Date Posted: Feb 06 2014 at 2:34pm
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Hello, Just wondering which drugs you are referring to when you say platinum. My sister was just diagnosed with TNBC. She is waiting for the result of her BRCA test to find out her surgical options. Her surgeon is Jodi L. Widner, M.D.in Denver. Her tumor was 2.6cm and grade 2. She is meeting with oncologist (dont know name) tomorrow. She will likely start her chemo next week. Thank you for any help
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Posted By: 123Donna
Date Posted: Feb 06 2014 at 2:51pm
Examples of platinum chemos are Carboplatin and Cisplatin.
http://forum.tnbcfoundation.org/adding-carboplatin-increases-pcr_topic11688.html" rel="nofollow - http://forum.tnbcfoundation.org/adding-carboplatin-increases-pcr_topic11688.html
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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
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Posted By: Lillie
Date Posted: Feb 06 2014 at 8:20pm
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Hi Zanne,
I'm not going to speak for the others who have posted, but I get a feeling in the pit of my stomach that you should seek a second opinion. You are being rushed into surgery, etc. without having all the facts you need. You probably will never feel as though you have enough facts, but at least you will know that you have more options.
If you should be in a situation to participate in a clinical trial, please make sure that you will be getting the trial drug that is being tested. In clinical trials, there are sometimes 3 arms and you could be randomized into a weak arm of a trial. Just a heads-up. I participated in a clinical trial 7 years ago and I really feel that the treatment I got, saved my life.
Steve is wonderful and He will lead you to a good path.
Good Luck and God Bless,
Lillie
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Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA-
6/06 L/Mast/w/SNB,1of3 Nodes+
6/06 Axl. 9 nodes-
8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4
No Rads.
No RECON - 11/2018-12 yrs NED
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Posted By: pneb
Date Posted: Feb 07 2014 at 9:24am
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Thank you 123Donna! I will tell my sister
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