Diagnosed with TNBC today |
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VivianR 
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Joined: Dec 30 2013 Location: Minnesota Status: Offline Points: 6 |
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 Topic: Diagnosed with TNBC todayPosted: Dec 30 2013 at 9:57pm |
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Hi everyone. I'm 53, and a few weeks ago I felt a lump in my breast. You all know the next part of the story--mammogram, ultrasound, biopsy. . . . At first they said, oh, small, very treatable, just a lumpectomy. Then I had an MRI which showed the tumor to be larger than they thought, and I had to meet up with the surgeon again today who recommended mastectomy, which is scheduled for Jan 3. I had been doing some reading about breast cancer and kept seeing the term "triple negative." I asked my surgeon if those tests had come back yet, and he had to look them up. It turns out I'm triple negative, and so I asked him what that meant. He just said that hormone therapies won't work for me so they'll have to "hit me harder with chemo." He didn't say anything about TNBC being more aggressive or having a worse prognosis, or that there were any other options for treatment.
This afternoon I did a lot of reading about TNBC, and learned about the possibility of having neoadjuvant chemo to determine what chemo my tumor will respond to best. I live in Minneapolis so I called an oncologist at the University of MN, who said that I should absolutely consult with an oncologist prior to surgery. I'm hoping to get in in 2 days, and either way I'm cancelling the mastectomy scheduled with the guy who didn't even tell me my diagnosis until I had him look it up. This is at a large breast cancer treatment center, and he's the department head. I'm feeling so scared and confused. I really really wanted to get the mastectomy done and get this out of me. But I guess a few more days is worth getting the best possible treatment. Any advice?
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puakai
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Joined: Mar 23 2013 Location: Colorado Status: Offline Points: 53 |
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Posted: Dec 30 2013 at 11:02pm |
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You may talk to me anytime you want. I am 53 and was diagnosed last march 12th. I was triple negative and braca 1positive. I opted for a double mastectomy, my sister had died from breast cancer, and had 4 rounds of chem. My tumor was small and had not spread to my lymph nodes so I did not have to have radiation. I just had my three month check up. All is good. I kno it is very scary at first but it is doable!
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123Donna
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Joined: Aug 24 2009 Location: St. Louis, MO Status: Offline Points: 13510 |
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Posted: Dec 31 2013 at 12:27am |
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Hi Vivian,
So glad you are educating yourself about TNBC. If I had one advice to anyone newly diagnosed would be to get a second (or even a 3rd) opinion from different treatment centers, NCCN facilities if possible. It was something I wish I would have done when first diagnosed. When I was dx neoadjuvant chemo was primarily for larger tumors and nodal involvement. Now it is being used more often for all stages of bc. The advantage is you can see if the tumor is responding to the chemo. The disadvantage is the waiting to see if it works. TNBC is aggressive, but often responds well to chemo. Consulting with an oncologist is a wise decision and hopefully will give you more information to make a decision regarding your treatment. If they recommend neoadjuvant chemo, ask if there are any clinical trials, maybe ones including platinum chemos like carboplatin or cisplatin. Wishing you the best. Keep us posted. 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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123Donna
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Joined: Aug 24 2009 Location: St. Louis, MO Status: Offline Points: 13510 |
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Posted: Dec 31 2013 at 12:33am |
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Vivian,
The results of this study were presented at the SABCS this month. http://www.oncologynurseadvisor.com/new-presurgery-combination-therapy-promising-for-triple-negative-breast-cancer/article/327268/ Donna Edited by 123Donna - Jan 02 2014 at 7:53pm |
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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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SagePatientAdvocates
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Joined: Apr 15 2009 Status: Offline Points: 4748 |
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Posted: Dec 31 2013 at 6:49am |
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Dear Vivian,
Welcome to our TNBC Foundation family and thank you for sharing. And sorry you have reason to be here. You wrote "I am feeling scared and confused." That is a totally normal reaction and no one here can give you a precise roadmap for treatment. There is a definite trend towards neo-adjuvant treatment and Donna has given you a good link. But it all can be confusing. And different oncologists have different opinions and that makes the journey even more difficult. I work as a volunteer patient advocate and several years ago made several visits to Minneapolis and Rochester helping a young woman with TNBC and also helping a woman with ovarian cancer. I am sending you my contact information if you would like to speak. I am not a medical professional and will not give you medical advice but perhaps a talk will be helpful. I had the pleasure to meet an excellent Breast Medical Oncologist. Dr. James Ingle-Mayo Clinic I assume (always dangerous to do) that you have met with a Certified Genetic Counselor and been tested for the BRCA mutation? good luck to you..The last time I was in Rochester I stayed at the Kahler Inn across from the Mayo and this old man almost froze just walking across the street. I watched the news last night and see that you have been having some frigid weather, again. The cold weather, though, was balanced by the warmth of the medical professionals I met. 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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VivianR
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Joined: Dec 30 2013 Location: Minnesota Status: Offline Points: 6 |
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Posted: Dec 31 2013 at 8:03am |
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Thanks everyone, it's so nice to hear from you.
It's great to have support for getting another opinion. I'm a physician myself, a pediatrician so not much experience with breast cancer. Less than 2 weeks ago I became the patient instead of the doctor, and in the whirlwind of testing and fear, it's so easy to just do what they tell you. I'm so thankful that I did enough research myself to have bells go off when I heard triple negative, and I'm disgusted that this breast cancer surgeon at a large hospital totally blew off my concern about the diagnosis. At 8am I'm going to call the Univ of MN and see if I can get an appointment for tomorrow. The oncologist I talked to yesterday did mention that I might be able to get into a clinical trial. That in itself sounds kind of scary, but since these platinum therapies are showing good results I want to check it out. Thanks for the link to that trial. (I'm sorry, I don't remember your name, and I can't get to previous messages from here.) And thanks Steve, for Dr. Ingle's name. It would be a rather long drive but I could contact him if necessary. Also, you are right, the temperatures here are horrible! In answer to your other question, no, it was not recommended that I be tested for the BRCA mutation. My surgeon just said that since I don't have a family history of breast cancer that it wasn't necessary. I will ask about that at the university. If it's positive, it seems like double mastectomy might be the best thing to do. I will let you guys know how things are progressing. Happy new year to you all! This is certainly not how I thought I would be starting 2014. But thank goodness I'm coming up with a better plan than my surgeon did! Vivian |
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Lillie
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Joined: Jul 10 2009 Location: Eastern NC Status: Offline Points: 3616 |
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Posted: Dec 31 2013 at 9:57am |
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Dear Vivian,
I am so sorry you had a need to find this site, but so thankful that it is here for all of us who need it.
Steve and Donna have given you wonderful advice in many areas of what to do.
I just wanted to say that if a surgeon, or oncologist is not knowledgeable about triple negative cancer.... "keep on searching"....
Please make sure you are getting adequate treatment for your cancer. Don't let anyone treat you as a stage I if you are a stage III. I volunteer in an oncologist clinic and the doctor believes in doing aggressive treatment in the beginning. You only have one chance to get it right at the beginning.
Best of luck and keep posting so we can encourage and pray for you as you travel this journey. WE UNDERSTAND.
God Bless,
Lillie (7 year survivor)
Edited by Lillie - Dec 31 2013 at 9:58am |
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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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123Donna
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Joined: Aug 24 2009 Location: St. Louis, MO Status: Offline Points: 13510 |
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Posted: Dec 31 2013 at 11:50am |
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Vivian,
Lillie is correct we only get one shot at hitting it hard the first time. Personally, I think you are at the toughest part of this journey - from being diagnosed to deciding upon a treatment plan. Once you get all your information and decide which path to choose, you'll feel better that you are doing everything to fight this beast. Donna
Edited by 123Donna - Jan 02 2014 at 7:54pm |
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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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VivianR
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Joined: Dec 30 2013 Location: Minnesota Status: Offline Points: 6 |
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Posted: Dec 31 2013 at 4:57pm |
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Thank you Lillie and Donna! I have an appointment with Dr. David Potter, an oncologist at the University of MN who only treats breast cancer, on Thursday. I will ask him about this trial, Donna.
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denise07
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Joined: Jun 26 2010 Location: pa Status: Offline Points: 997 |
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Posted: Dec 31 2013 at 10:14pm |
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Vivian,
Sorry you have to be here it is all so overwhelming we will be here for you and good luck with your surgery and treatment plan,once the ball gets rolling you will feel better.
Denise
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DX Idc 10/07,st2,gr3,2/6 lymphnodes
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SagePatientAdvocates
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Joined: Apr 15 2009 Status: Offline Points: 4748 |
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Posted: Jan 01 2014 at 12:00pm |
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Dear Vivian,
You wrote- "It was not recommended that I be tested for the BRCA mutation. My surgeon just said that since I don't have a family history of breast cancer that it wasn't necessary." His advice was inappropriate in my opinion based on the NCCN recommendations- Under these guidelines (by the NCCN, the most respected authority in our country) it states- any woman who has been diagnosed with TNBC <60 years old should be tested for the BRCA mutation. In my opinion you should meet with a Certified Genetic Counselor and consider testing for the BRCA mutation. It is quite possible that, absent a family history, you will test negative but it is also possible that you can test positive. I have worked with a number of women, over the past several years, who have tested BRCA+, even absent a family history. It seems many times the mutation was 'hidden' on the Father's side. The only way to be sure is to test. About 75% of the time when a BRCA1+ woman has breast cancer it is TNBC. Vivian, as you wrote, if you were BRCA+ the treatment plan might be very different for 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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Kellyless
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Joined: Jun 18 2009 Location: Dallas, Texas Status: Offline Points: 1154 |
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Posted: Jan 02 2014 at 5:55pm |
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I am absolutely sure that getting a second opinion and changing hospitals and doctors saved my life - you made a great decision seeking one out. This is a very scary part of the ride, but you've already made a couple of brilliant decisions (educating yourself, seeking a second opinion) so you'll do just fine.
You'll be spending a lot of time with your medical and your surgical oncologists - this year of course, but ongoing as well. I'm 4 years out and still see both twice a year. It's important that you are totally comfortable! If you don't take to the next one be bold and meet another. They should do the BRCA tests no question. Being TNBC means you should be scheduled with a genetic counselor right away - no other type of Dr should be making the decision out of hand. Usually you'll be scheduled for other tests as well. I had a CAT scan, bone scan, heart scan etc. These th I msg usually turn up "concerns" requiring further testing but don't worry! My CAT showed something on my ovary - ultrasound showed a normal cyst. Bone scan lit up on a back rib - xray showed it was a he as led fracture I didn't know I'd had, probably a car wreck 20 years before! All these things are so you'll have the best overall picture of what you're dealing with before you commit to a treatment plan. Has anyone suggested a breast MRI to get a clear picture of what's going on? Since you were told one thing then another about the size it couldn't hurt to have one. Mastectomy is not always the only option, again, information is what you need for informed decisions.
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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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