BRCA 1 and TNBC - Anyone out there?
Comments
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jen - please make sure they monitor you closely. My oopherectomy was done as a preventative measure and cancer cells were found in my right ovary. My gyn, MO and PS were all surprised as ultrasound and CT scans were normal. Gyn said ovaries looked perfectly normal when she removed them.
My prognosis looks great because it was caught so early and doesn't appear to have invaded other abdominal and pelvic organs. Be vigilant!
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You know it journey4life!! I'm all over them. I'm not sure what else they can do at this point in time except US and blood work since I am in chemo then rads. Thoughts?
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jen - that's probably all you can do right now. You could ask for a blood test for CA-125 which tests for the presence of ovarian cancer cells, but from what I understand, the test is not intended to be a diagnostic one. You may want to ask your MO to see if it would help in their monitoring of you. I would be interested in what your MO says. My MO will test CA-125 and CA 15-3 every 8 weeks now, just to keep an eye on the levels. So far, the results show normal levels and I'm hoping it stays that way!
Had 2nd tx for OVCA yesterday - only 16 more to go! Its a good thing I am comfortable in and like my infusion center. I was told that because I had chemo before, the effects are cumulative and side effects can be more intense. Oh joy...so far, am lucky to have only slightly queasy stomach and sensitive tongue. Both happened during last tx but later in the course of tx.
Sun is finally out here after many days of rain and Thursday's snow! YAY
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Yes, the CA-125 was the blood test they completed. Thanks for the advise.
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My mother had breast cancer at 34, that's how my sister and I knew we'd need to stay on top of our breast health. Many years passed and life continued.
My sister at 29 was diagnosed with stage 3 breast cancer. 18 of 24 nodes were positive. At that time she took the test and tested positive for the BRCA1 genetic mutation. I was 27 at the time and scared as heck to face something as scary as the test. Well 2 years ago I took the test and it came back positive. I was really sad that day because I had hoped I would be the lucky one.
Now two years later I just had my own battle with breast cancer. Because I knew I carried the gene I had a doctor who was aggressively monitoring my breasts. So every 6 months I had an MRI, and the last one caught it. Three tiny tumors that ended being cancer.
Thank god that text is available because I would have just Barrie's my head in the sand. -
Doragirl, I hope you are staying strong and getting through your treatments! Thank god you have a wonderful Dr...how is your sister doing?
I am the first person in my family to have cancer, so it came as a huge shock that I had a BRCA2 mutation. It came from my mom's side. So far 4 out of 6 siblings (two being identical twins) have the mutation.
Hang in there, you can do this!
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Thank you. I am all done with my treatment. Thank god!
My sister is a 6 year breast cancer survivor. She is doing great.
Cancer came as shock to my mother as well. None of her relatives tested positive for the gene. The ones alive to take the test. My fathers family no gene no cancer.
How old we're you when your were diagnosed? And what is the main difference between 1&2? -
Dora - your family was stricken at such a young age...20's and 30's. In my family, always in our 50's, with brca2. The brca1 gene is on the 17th chromosone and the brca2 is on the 13th chromosone. They both increase risk for breast and ovarian, but I think the risk for ovarian is higher for brca1, than for brca2. Additionally, brca2 is at risk for pancreatic cancer and melanoma. I don't think that is the case for brca1. Brca1 tend to be more triple negative breast cancers than brca2. Not sure of this, but I believe brca2 has more er+ breast cancers, but can also be triple negative.
Was your sister er+ or triple negative? That is such good news she is 6 years out.
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Hello, thought I would post here since I'm newly diagnosed TNBC and also BRCA1 positive. I'm doing 4 rounds dose dense A/C followd by 4 rounds of Taxol with MX to follow. My surgeon wants me to wait 6 months after I finish treatment before we do the othe breast. I plan to also have ovaries out too.
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sweetpickle - we have a lot of similarties, PM if you have any questions.
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Brca women - please inquire with your MO's about getting Carboplatin too. There are clinical trials going on right now about using platins with brca cancers. They seem to behave like ovarian cancers (they use Taxol and Carboplatin). My MO Rx'd it after A/C and T (dose dense). I feel darn lucky.
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Kam170 - I see you have a ooph, is the carboplatin in addition to that? I plan on having a hysterectomy after my radiation is complete. I suupose I am not following completly, probably bc I had tx yesterday.
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For chemo, I had AC dose dense, then Taxol dose dense, then my MO ( at a teaching hospital) adds carboplatin at the end. Six times, once a week. This was for my BC...the ooph was prophylactic. I am brca2+.
http://www.hccpjournal.com/content/7/1/8
I just did a search to find the first article that came up. You might do your own search if you think it applies to you (for something more current). I would help, but leaving my computer for awhile. I know they are doing clinical trials at this time on Platins and brca, so my MO giving this to me was him "going off the reservation" (in his own words). The Carboplatin, as given, was very easily tolerated compared to the A/C or T.
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Welcome, sweetpickle! Its a sisterhood none of us wanted to join but here we are. I had DD A/C followed by Taxol - you can and will do it!
My best to everyone
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Love your comments Dus10! Here's to life!!! Enjoy every day!
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I am BRCA 1 / TNBC. First diagnosed April, 2010. Tumor was in left breast only & nothing in the lymph nodes. Thought I was being aggressive in my treatment by opting for dbl mastectomy & chemo then complete hysterectomy after my treatment. Went for a routine, follow-up petscan in November, 2012 and a small mass was discovered in my right breast. Surgeon removed the mass (1.2mm) with clean margins all around but once again it was a triple negative diagnosis. Currently going thru 7 weeks radiation to right breast & lymph nodes on same side as well as low-dose chemo 1x week. Oncologist is 90% sure that she wants me to have more chemo following the radiation, but will be presenting it to the tumor board next month before a final recommendation is made.
I am wondering if there are any other BRCA 1/TNBC individuals out there who have experienced a second primary cancer diagnosis? And if so, what treatments were recommended? I am really struggling with the thought of another 4-6 months of chemo, given that it was detected early and surgeon obtained clean margins.
I'm feeling a little like "darned if I do / darned if I don't".
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Susan - not TNB or brca1, but I am brca2. I'm curious...you said you had a bmx in 2010, but came up with BC in the non-cancer breast 2 years later?? I know there is a chance that breast tissue cannot be completely removed and there is still a risk for BC, but fairly low. Did I read your post correctly?
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Kam170 - yes you read correctly. I knew there was the chance of breast tissue remaining after a bmx and obviously there was in my situation. And even though the petscan and MRI did not show anything other than the one small mass they are concerned that there could be microscopic cell(s) that wouldn't show up. Plus I was told that since I have already had a bmx that there is no way to do lymphnode testing on the right side - the only option would be to remove all of the lymph nodes which we are not doing since that could lead to other problems. So their recommendation is radiation & chemo to hopefully take care of any remaining cancer cells.
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Susan - I'm really on high alert with your post as I had a mass in my clean breast (though I had a prophy MX on that side) too, like you. After US and biopsy, it proved to be a surgical abnormality, but I just reread your original post again to make sure I understood. You said a "routine followup petscan?" Is there a reason you are getting a routine petscan? Is this because you are TNBC or because of your BRCA status?? I did get a petscan with my original dx, but they had no inclination to do one (or so it seemed) until I showed up brca2+. Perhaps they would have done one later when I got my oncotype (high) results and maybe they always do petscans with TNBC? Also, I was told a petscan would not pick up anything smaller than 4mm, yet yours showed up at 1.2mm? I assume you are saying they can't determine the Sentinnel node in the case of you recent tumor?
So sorry you have to go through radiation and chemo again...though this is a very small tumor, thankfully... and are they sure it isn't recurrence?? Do you mind me asking what part of your breast the second tumor showed up in? Do you keep your implants?
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Hi everyone,
I am BRCA1 and TNBC. I have just recently finished treatment - dose dense AC x 4 and T x 4. No radiation because I am in the grey area. My onc told me that there was no additional follow up unless there were symptoms of reoccurance other than seeing my bs in July and my onc in December.
My GP has ordered a MRI on the suggestion by the Genetic Counsellor that did my BRCA1 testing.
I am now focussing on recovery and losing the steroid weight. It is very hard not to worry about reoccurance, etc. My bs is not willing to do recon surgery for a year because she wants me to be fully recovered. I am referred for an oopherectomy.
Is there anyone who is TN that had lymph node involvement? I had 3/5 but my bs felt that there was likely more because she only got two lymph nodes when she did my ALND.
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Kam170 - they are calling it a "second primary diagnosis" since the 2nd tumor was in the right breast (lower front - near my incision from the mastectomy). First tumor was on the side of my left breast. My dr suggested routine follow-up petscans because of my BRCA1 diagnosis. Had one six months after my initial diagnosis then we were doing annually. Thank goodness otherwise I don't think it would have been discovered so early. My implants have not been an issue for my current course of treatment (again - thank goodness!). Same surgeon did my mastectomy as well as my recent biopsy; she told me that a lymph node dissection could not be done once the breasts are removed. And they did not do a dissection on the right side previously since the initial tumor was on the left side / nothing appeared in the petscan on the right.
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Welcome to the newcomers!
jcolford - I had 2/22 lymph node involvement. At the time, I questioned why my BS removed so many nodes; it seemed excessive to me. However, I am now thankful as I think he was giving me the best chance against recurrence because of TNBC and BRCA1.
I urge all ladies with BRCA to seriously consider an oopherectomy. I had one in November as a preventative measure and pathology report came back with a new primary in one ovary. I had a CT scan prior to surgery that didn't detect the cancer and my gyn/surgeon said my ovaries looked perfectly normal. My medical team (and I) were shocked at the path finding. I'm now back on chemo (weekly in 3-week courses for a total of 18 weeks). Altho I hate having to go thru all of this again, I'm so thankful the ovca was found so early!
Rainy and dreary here today in VA. Suits me fine...not alot of energy to do much anyway!
Keep up the fight, ladies! Good vibes to all...
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Journey: Thank you for your post -- I am going to make my appointment this week, and if I'm a carrier will also select the ooph.
JColford: Why did they recommend an MRI? Was that of the whole body?
I'm having a surgery on Mar 13th to remove scar tissue at base of right implant. The us/mammo showed nothing suspicious in Oct, but I was given a 6-month return note. I instead waited only until Jan and had an MRI - I didn't want to wait 6-months. The MRI came back as nothing to suggest malignancy, but again, was also put on a return follow-up with us/mammo in a short-term interval. Obviously, I can't live like that, going and wondering from appointment to procedure each time, so I called my plastic surgeon for assistance. I sensed some hesitation from the breast surgeon's office, I think because the report stated "nothing to suggest malignancy" on the MRI. My plastic surgeon also previously felt/reviewed the area and think it is scar tissue or the sling for my implant has folded over. At any rate, he and I decided I needed closure on this, so he is doing the surgery. He also has other things he can do while in there. I have other scar tissue, not visible, but he wants to clean up a bit, and he thinks one of my implants rotated around, from back to front. Must be the wild swinging from the chandelier that I've been doing ... not! LOL
)
It is a scary road for sure. I have reached my 1-year healthy victory on Jan 4th (we don't ever use the c word in our house now). It is stressful some days, yet some days I hardly think about it. But it is always in the back of my mind, such as when I can't eat something that I want. Or when I have to go exercise, under extreme protest. I exercised 2 hours today to put some time into the bank, in case later in the week I want to do less.
I'm so glad you are all on here. At times I think it is hard for others to understand why I worry a little, or why I am excessive about the eating and fitness. I drive myself crazy. Do I stay with low-fat diet, and then add in the low-alkaline diet? Do I aim for the modified Mediterranean diet? Or do I follow the low-gylcemic one?
I would like to mention, that I'm so glad everyone is so pro-active about their health. If it turns out that I'm not a BRCA carrier, I might still do the ooph, if I can get it approved with insurance.
I wish everyone a great day - and extra hugs for anyone who is feeling a little anxious today. Hang in there, it'll get better!
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Hi InspiredbyD,
The reason that they recommend a MRI is because my tumor didn't show up on a regular mammogram and apparently a MRI is much more reliable for finding genetic bc.
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jcolford - As far as radiation, and not having it, what "gray area" are you in? It was my understanding that all women with node involvement get radiation.
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I was told that they would radiate for mastectomies that had a tumor over 5 cm or minimum 4 lymph nodes that were positive for cancer. That is why they did the ALND to get more lymph nodes. Unfortunately they only got two more lymph nodes and one of them had cancer cells and one didn't.
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Jcolford - maybe some one else can chime in here...most of the people that I know who had TNBC and nodes (even some without nodes) received radiation. However they all did have lumpectomies not mastectomies. If you would feel more comfortable with radiation maybe you could try talking it over with your onc (based on your bs comments to you. I guess they don't like to do radiation unless they have to (as there is a lifetime limit). It is like you still have it in the bank in case you need it.
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I am having radiation. I am BRCA1+, TN, young, had a small tumor, 1 positive intramammary node (no axilla's were positive). I am stacking my deck of cards now regarding treatment.
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I called my bs to request a second opinion and now I am just waiting for an appointment.
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That 2nd opinion will help you sort things out. And also, along with the medical decisions you make, use your gut as a guide. If your gut is telling you something is not right or you have more questions, trust your gut, and keep going until you feel that certainty inside you.
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