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LindyE 
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Joined: Oct 18 2013 Location: Maryland Status: Offline Points: 10 |
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 Topic: My first post tooPosted: Oct 18 2013 at 9:17am |
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Hello Everyone, I’m 56
and was diagnosed with TNBC in early June after a routine 3D mammogram. 1 cm, no nodes, grade 2. BRCA-. I had a lumpectomy followed by DD C/T x 6.
I had my last chemo on 10/8 and radiation to start in a week or so. I’ve
been a lurker, reading so many helpful posts on this forum and I feel like I’ve
learned so much from all of you. I was so scared in the beginning but feel like
I can beat this and want to thank all of you for the wisdom and care you have
shown on this forum. I have some pesky chemo side effects, watery eyes, black
and lifting fingernails and muscle fatigue. I hope I’m right in thinking that
radiation will be easier, but I know everyone is different. It’s a long journey
both physically and mentally, and I’m glad I found this forum. I just want to
say thank you. |
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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: Oct 18 2013 at 9:28am |
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Hi LindyE,
Welcome and thanks for sharing your story. Congratulations on finishing chemo! 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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NovatoGal
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Joined: Oct 18 2013 Location: Novato, CA Status: Offline Points: 2 |
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Posted: Oct 18 2013 at 2:07pm |
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This is my first post too. I was Dx with BC on 9/9/13. I received the TNBC news on 9/13 (didn't know all the ramifications, but my surgeon really scared me). I had a lumpectomy on 9/24 1.1 cm sentinal nodes neg. (stage 1c) Grade 2, Invasive Ductal Carcinoma. I begin chemo on 11/4 and have chosen to be part of a Clinical Trial. My oncologist would have had me do 6x TC. The Clinical Trial is randomized. I qualify because of the Triple Negative status. Other women qualify because the BC is more advanced and Lymph Node +. Any comments about Clinical Trials? Also, how do you get your status to display? (stage of cancer, etc.)
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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: Oct 18 2013 at 2:25pm |
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Hi Novatogal,
Do you know the name of the clinical trial? Many times clinical trials are the best option to get more than the standard of care, especially drugs that haven't been FDA approved yet. They also monitor you more closely. To answer your other question about getting your information so that it shows up at the bottom of your posts: 1. Go to the upper left side of the screen and click on Member Control Panel. 2. Click on Edit Profile 3. Scroll down until you see Signature. Type your information that you want to appear at the bottom of your posts in the box. 4. Scroll down to the bottom of the page and click on Update Profile to save your information. Donna PS: Have you had your Vitamin D levels checked? Most of us diagnosed are deficient in Vitamin D and its important to know your number and supplement if you are low. We have a thread talking about Vitamin D3 with lots of information about the connection to cancer. |
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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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Lee21
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Joined: Dec 22 2011 Location: Michigan Status: Offline Points: 752 |
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Posted: Oct 18 2013 at 3:18pm |
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Make sure the comparator (control) arm also offers standard of care chemo. You need chemo for stage 1c. Which trial are you thinking of?
Lee |
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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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123Donna
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Joined: Aug 24 2009 Location: St. Louis, MO Status: Offline Points: 13510 |
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Posted: Oct 18 2013 at 3:49pm |
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Lee21,
Good point. You need at least the standard of care as the minimum for any arm of a clinical trial. 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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NovatoGal
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Joined: Oct 18 2013 Location: Novato, CA Status: Offline Points: 2 |
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Posted: Oct 18 2013 at 5:00pm |
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I don't have the name of the Clinical Trial with me right now. If I get into Arm 1 my doctor and I chose Regimen D, which is 4X AC at 2 week intervals followed by 4X Paclitaxol also at 2 week intervals. No new drugs are involved, also no placebos. I've been taking large doses of vitamin D since before my Dx but only for about 6 months. Thank you for the tips, I need to work out how to present my Dx. |
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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: Oct 18 2013 at 7:23pm |
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Hello NovatoGal,
I hope you get into the trial. I also hope you get Arm 1, Regimen D. For sure Dose Dense ACT should take care of things. That is what I had, plus Gemzar added to the mix, in the trial I was in 7 years ago.
My sister-in-law was chosen for an avastin trial 2 years ago. She was stage 3C, Grade 3 at time of diagnoses. She was randomized into the weakest arm of the trial, Taxatere and Cytoxin, every 21 days X 6. She also had radiation. It was criminal of her oncologist to let her proceed with the trial without getting the Avastin. She has been given maybe 2 months to live, as of today.
Please make sure you get the "Standard of Care" treatment, usually ACT or TAC in some variation. Please keep us posted about your journey, and Good Luck.
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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furrr17
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Joined: Oct 17 2013 Status: Offline Points: 1 |
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Posted: Oct 20 2013 at 10:08pm |
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Hi. I am new here. I was diagnosed on 9/17 with TNBC after my 2nd ever mammogram. Mammogram turned into biopsy and the biopsy confirmed the cancer. I am 41 years old. Breast MRI shows only 1 tumor about 1 cm in size. Genetic testing just came back and I am BCRA-. Been to see 2 surgeons and both are recommending lumpectomy followed by chemo and radiation. I need to decide tomorrow and get the surgery scheduled.
However, I am torn on what is the right thing to do. I have talked to 3 other women that have been diagnosed with BC in the last 2 years. All have opted for bilateral mastectomies. None have been triple negative.
I was hoping for some guidance in making this decision.
Thoughts?
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TriplePositiveGirl
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Joined: Oct 07 2010 Location: Los Angeles, CA Status: Offline Points: 667 |
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Posted: Oct 21 2013 at 2:20am |
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Hi Furr17,
Welcome to the forum! Though this diagnosis is not what anyone ever wants, be thankful that you caught your cancer at a very early stage. That means a lot! It would seem to me that with your size tumor, a lumpt. would be a very good option - and the least invasion surgery procedure. I also chose a lumpt - my doctors did not feel that a bi-max would give me any better odds to reduce recurrence risk than lumpt., chemo and radiation. I had chemo first, then surgery, then radiation (my tumor was larger than yours so neo-adj chemo was recommended to reduce the size before surgery). This is a very personal decision, and we are all different, so what is right for one woman, might not be for another. I don't think your doctors would advise you to have a lumpt if they felt that a mast. or bi-bax was the best choice. I wish you all the best.. Lisa
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Diagnosed Jan 2010; Stage IIa, grade 2, 3.2cm in rt. breast, no nodes and BRCA-. 4 cycles Carbo/Gemzar 3/10; Lump 6/10; 2 cycles carbo/gem after surgery 8/10; 35 Rads finished 12/1/10. NED.
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Charlene
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Joined: Aug 14 2010 Location: Atlanta, GA Status: Offline Points: 613 |
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Posted: Oct 21 2013 at 8:56am |
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Hi, Furr17,
Not all women are even candidates for lumpectomy instead of mastectomy. Since you are, you have to make the decision that you feel you can best live with going forward. Most research that I have seen says that long term survival rates are the same, regardless of which type of surgery you choose. If you have a lumpectomy, you have to be monitored more closely for local recurrence, and mastectomy is still not a guarantee that it will never happen. Sounds like you have already gotten two opinions and that's good. I likewise wish you the best! Charlene
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DX 3/10 @59 ILC/TNBC
Stage 1, Grade 2, Multifocal; Lumpectomy/re-excision SNB 0/4 nodes, BRCA-; Taxotere/Cytoxan X4, 30 rads 3/14:NED |
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Grateful for today
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Joined: Sep 21 2011 Location: U.S.A. Status: Offline Points: 1835 |
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Posted: Oct 22 2013 at 8:23am |
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LindyE,
Glad you found this forum. As you already have found there are many caring and knowledgeable women and men here. Every one may have slightly different responses to each part of one's treatment plan. It does seem for many that the radiation therapy part is "easier" (so to speak) than the chemo. Some find with pacing for some fatigue and making a plan for rest helps. With caring and positive thoughts, Grateful for today.........................Judy |
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Grateful for today
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Joined: Sep 21 2011 Location: U.S.A. Status: Offline Points: 1835 |
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Posted: Oct 22 2013 at 8:39am |
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NovatoGal,
Glad you found this forum. As you already have found there are many caring and knowledgeable women and men here. If you could find out the the Clinical Trial Number from the Clinical Trial Coordinator, someone might suggest some questions for you to consider asking. Also, I am assuming that BRCA testing would be included in the baseline lab work of the Clinical Trial. (Prefer not to assume........thus you may consider asking if BRCA testing was included.) With caring and positive thoughts, Grateful for today.........Judy |
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Grateful for today
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Joined: Sep 21 2011 Location: U.S.A. Status: Offline Points: 1835 |
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Posted: Oct 22 2013 at 9:51am |
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furrr17,
Glad you found the foroums here at the TNBC Foundation website. From your post, I am not clear if you have ALSO had a medical oncology consults in addition to the 2 surgical consults. It is important to have BOTH surgical and medical oncology when deciding on your treatment plan with your providers. Even if one has already booked a surgery date, there is usually still time to have the medical oncology consult prior to the surgery. You may like to consider the following: You will have many questions on your list to ask your physician. Be sure to consider including the following with your questions: - What are the pros and cons of chemo first? - What are the pros and cons of surgery first? - What are the pros and cons of each chemo option? - What are the pros and cons of each surgery option? - Request a referral to a Certified Genetics Counselor for a BRCA test consult. - Confirm that a Vit D test has been done. - How do I contact you for any questions after my appointments? - How much time do I have to make my decision? - Confirm that your oncologist is knowledgeable on TNBC and treats about how many cases per year. - Seek a 2nd TNBC Expert Opinion if there are any questions on TNBC provider expertise /TNBC treament plan. - Am I eligible for any clinical trials? Pros and cons. With caring and positive thoughts, Grateful for today....................Judy Edited by Grateful for today - Oct 22 2013 at 5:57pm |
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CAfree12
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Joined: Jul 26 2012 Location: Texas Status: Offline Points: 51 |
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Posted: Oct 22 2013 at 5:53pm |
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I will speak to how I chose a double mastectomy. My tumor was average size 1.5cm and very lateral - almost in the tail of the breast on the right side. I had already been through 5 years a mammograms every 6 months after other benign surgeries and biopsies - and as I later found out my right breast was a ticking time bomb with lots of atypical hyperplasia. Anyway - I had large breasts simply from being overweight - never had big ones when I was young and it mattered.. I also have scoliosis - so facing 6-9 months of being out of balance was just not an option for me. No one said a double mastectomy was wrong and I was and still am happy I chose it. I was warned about lack of sensation and possible issues with losing my "starter button" nipples - some of that has proven to be an issue. BUT - for me, I am delighted to get my perky chest back and I don't think I would do it any different.
I will agree with the person that said if you do lumpectomy you must be dilligent with your follow up mammograms. I have seen pictures of recurrences at the incision site in breast conference - you will need to be faithful! If that is an issue for you - facing a mammogram every 6 months - then consider that in your decision making.
Good luck - you can do this!!
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Diagnosed Oct 2011 @ age 53, Stage 1c, grade 3, 1.5Cm, neg nodes;double mastectomy with TE, dose dense AC+Taxol; BRCA neg; treatments finished April 2012
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TriplePositiveGirl
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Joined: Oct 07 2010 Location: Los Angeles, CA Status: Offline Points: 667 |
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Posted: Oct 22 2013 at 7:21pm |
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CAfree12 -
I had a lumpectomy and I only had mammograms every 6 months for the first 2 years - then it went to once a year. (And I have a very conservative doctor!). I don't believe that mammograms every 6 months after the firs few years are necessary or recommended unless there are extenuating circumstances. I do make sure to perform self-exams (which in my case is how I found my tumor) regularly and I listen to my body carefully. Of course I see the oncologist still every 6 months (for 5 years), and blood work is drawn during those visits. I have read about recurrences at the incision site - but those were not just in lumpt., they were in mastectomies as well. There is no guarantees with any of this unfortunately. Lisa
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Diagnosed Jan 2010; Stage IIa, grade 2, 3.2cm in rt. breast, no nodes and BRCA-. 4 cycles Carbo/Gemzar 3/10; Lump 6/10; 2 cycles carbo/gem after surgery 8/10; 35 Rads finished 12/1/10. NED.
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CAfree12
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Joined: Jul 26 2012 Location: Texas Status: Offline Points: 51 |
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Posted: Oct 23 2013 at 11:13am |
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TriplePositiveGirl is correct that after a couple of years the post op mammogram can be done once a year vs every six months. The cases I was referring to are often women that fail to do consistent follow ups and don't check back in until they have a large recurrence.
So the point is to stay in close follow up and continue self exams.
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Diagnosed Oct 2011 @ age 53, Stage 1c, grade 3, 1.5Cm, neg nodes;double mastectomy with TE, dose dense AC+Taxol; BRCA neg; treatments finished April 2012
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