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BPXDomino View Drop Down
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    Posted: Jun 30 2018 at 6:53pm
Hi everyone - I wrote a rather long post and lost it. So I will try again here...

I am 37 and was diagnosed with TNBC on Monday. My mother had breast cancer at age 32 and my grandmother had it in her sixties. However, my mother was tested in 2014 (full panel, not just BRCA1 and BRCA2) and came back negative. So I was surprised when I was diagnosed. I am waiting for my own genetic test results to come back so I can see if I have it. And if it comes back positive, there's no question I'll get a double mastectomy.

But if it's NOT positive... the surgeon tells me that having a mastectomy is not going to yield any different result from having a lumpectomy. She also tells me that the order (chemo then surgery vs. surgery then chemo) doesn't matter, but she's pushing me to have chemo done first because she thinks I'll be able to start that much sooner than having surgery, and that it will also get me some treatment while I wait for my own genetic test comes back for me to make a decision on type of surgery I want. 

The oncologist, however, strongly hints I should have a double mastectomy regardless of test results because of my age and family history. He says I would need to have that surgery first. (But I've seen websites that say chemo first is actually beneficial for TNBC).

My mother thinks I need to do what she did - single mastectomy, then chemo - because that's what she did 30ish years ago when she had it, and has been healthy ever since. No problems. But I know a lot has changed in 30 years, and if I don't have to put myself through a mastectomy, then why should I?

So I'm wondering if anybody else has heard what my surgeon is saying - is it true that type of surgery and order of treatment doesn't matter? I'm going to get a second opinion for sure, but I hate waiting and not DOING anything. I feel like every day counts. 

Just wondering how others have approached their treatment. Did anybody opt for a mastectomy over lumpectomy knowing that it wasn't going to improve outcomes?

If anything here doesn't make sense, let me know, this is the second time I'm typing this all out because I lost the first one, so I'm going really quickly and it may be disjointed :)
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Hello,

I am truly sorry that you are going through this confusing and terrifying time right now. As others have posted and I agree, the time right after diagnosis and before treatment is the hardest because there is so much information and so many choices. I was recently diagnosed as well with stage 1 TNBC, and because my grandmother had breast cancer at a young age as well, I personally opted for a bilateral mastectomy even before I got the genetics results back. I pushed for the surgery first and had it within three weeks of diagnosis, and started chemo 4 weeks later. My surgical oncologist agreed with my decision because she said there is a 1% chance per year of a new cancer, and because of my younger age that could be a pretty big percent. However, research has shown that recurrence rates are the same for mastectomy and lumpectomy with radiation. It was more for my own peace of mind, and I am pleased with my decision. It turns out I do have BRCA1 mutation.

At the time of surgery I did not know it was triple negative because the biopsy pathology showed hormone receptors. If I had known I might have thought more strongly about having chemo before surgery because there is research showing the more quickly it is initiated is associated with better outcomes. Also, you can see how the tumor responds which can show whether you need different chemo. I just was dead set on getting it out. These decisions are very personal, and as my oncologist said, nothing you want is wrong. I was small chested, and not really attached to my silhouette, so bmx was an easy choice for me. Get a second opinion from both another surgeon and oncologist if you can, which may reinforce your choices or change your whole plan. Whatever you decide will be right for you. Just know you can do this- either way!

Liz
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Jul 02 2018 at 9:48am
Welcome, so sorry for your diagnosis but glad you found us. Your surgeon is correct that if you do not have a genetic predisposition under the right circumstances a lumpectomy will statistically give you the same long term survival chances as mastectomy. Because of your age and family history, I think you are wise to consider mastectomy. I'd say the correct wording would be you and your mom don't have a genetic mutation that they've found _YET_. A friend of mine was diagnosed with TNBC last year, she tested positive for a newly discovered BARD1 mutation. The discovery of this mutations function is fairly new - I wasn't tested for it the first time I was diagnosed in 2009. When I was diagnosed again in 2016 one of the first things they did was send me back to the genetic counselor who tested me for a slew of mutations that they've discovered since my first diagnosis. Because it is incredibly rare to get the same TNBC cancer in a fully treated breast 8 years later, and I have no female relatives (26 boy cousins!). I tested negative for them all, but both of my oncologists think it probably had a genetic component so both UT Southwestern and MD Anderson have my blessings to dig deep into my DNA and look for any issues.
Despite my rare recurrence I'm still a firm supporter of lumpectomy in the right circumstances. One of those circumstances being family history - that you have female blood relatives in both branches of your family of multi generations and they're all breast and ovarian cancer free until at least 63-66 ish years old.
One more reason - a valid one - is how important reconstruction is to you. Reconstruction is much easier and less risky if you have NOT had radiation to your chest. I knew this vaguely, but did not re ally understand it until I attempted reconstruction this time. It failed, I ended up with 3 more surgeries after mastectomy and was in wound care for 9 months. Ask your surgeon about that next time you see her: What are reconstruction options now, and what would they be if I had a recurrence after full radiation treatment and needed it then?
I agree with Liz about neo-adjuvant chemo, in your shoes I would fully explore that option before making decisions. Especially mastectomy decisions, as starting chemo quickly is always best with grade 3 TNBC.
Going thru this at 37 is NOT FAIR - I'm angry at the universe on your behalf! Stay in touch with us, you'll be in my thoughts often now
Kelly
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/17 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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Thank you both for your support. I'm also wondering how long everyone had to wait between diagnosis and treatment. It's been one week since I've been diagnosed and it's agonizing not having a plan in place. I am trying to get a second opinion and am still waiting on genetic test results, but these things take time. My surgeon and oncologist were not in agreement on how to proceed, and my mom is shouting in my ear that I need to do exactly what she did 30 years ago for best outcomes and doesn't seem to understand why chemo first would be recommended because why isn't it the best option to remove it right away? I'm not equipped to explain it to her because I don't fully understand myself, despite all of the Google searches I've done. And part of me is wondering if I'm being pushed to do chemo first simply because the surgeon isn't going to be able to get me in quickly enough. 

Maybe I shouldn't be worried about timing though? If it usually takes a month or so to get started with treatment, then I'd feel a little less rushed and a little more at ease.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lisa s Quote  Post ReplyReply Direct Link To This Post Posted: Jul 02 2018 at 11:13pm
I am so sorry you have to be on this website however the ladies here are wonderful! Short explanation is chemo first tells them if you will respond to treatment as this will help l them decide going forward what will and won't work.   From what I understand if you are brca negative mastectomy not always necessary. I was diagnosed last May and started treatment within a week and a half. I told them I wanted first chemo same day port was placed. So that could be Why I started so soon. . Why they didn't offer that up right away , I am not so sure. I did AC then Taxol. Taxol was more tolerable for me. Lumpectomy and lymph node biopsy was next then radiation.   I hope this helps!!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Jul 03 2018 at 11:49am
It was about 6 weeks between diagnosis and starting chemo for me both times. There's a slew of tests you need including getting the results, a slew of doctors to see including that second opinion. Like Lisa said, doing chemo first is the only way to know if the chemo you are doing actually is working for your particular tumor. You are a good candidate to get a pathological complete response (pCR) meaning the chemo completely kills all of the cancer prior to your surgery. This study shows that they found a significant improvement in recurrence and survival when neoadjuvent chemo achieves pCR: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5762543/ so MOM! do you think they've learned anything new about breast cancer since 1987? do you think they've made advancements in treatment and survival rates? Why have chemo first? It may give me a higher chance of not DYING, is that a good reason?
My second opinion changed my course of treatment both times. In 2009 I was cured, in 2016 I achieved pCr and so far so good.
Your mom is terrified of course. But it's your body and you have to listen to your gut. And as many awesome doctors as you can before you have to start chemo.
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/17 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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Welp. I've got a date for surgery scheduled for July 19th. I will be having a single mastectomy, with reconstruction at the same time (I could have gone in for surgery on the 10th without reconstruction, but my surgeon didn't think one week would make a significant difference). Even if the genetic test results come back positive, I think it's best to maybe have another procedure further on down the road... I would not want complications or infection to arise from taking off a second healthy breast, thus delaying chemo. 

I discussed neoadjuvant therapy with my doctor and he really didn't seem to be an advocate. He shared exactly what you've all shared here and what I've read on Google - that the advantage is seeing if there's a response to the chemo, or shrinking the tumor for a lumpectomy, but for whatever reason he was very tepid about going that route. 

I'm just anxious to get started with something and feel much better about having a plan. If I hear anything different from the docs that are working on my second opinion, then I will change course, but for now I'm at least relieved to have a surgery date on the calendar. 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Riedline Quote  Post ReplyReply Direct Link To This Post Posted: Jul 03 2018 at 5:53pm
BPXDomino,

It is a scary feeling that I remember well- having no answers and feeling like there is a ticking time-bomb in your chest. I agree with Kellyless- it can take a few weeks to gather the information, tests, second opinions you need to make an informed decision. I had my bilateral mastectomy three weeks after diagnosis and began chemo four weeks following after the surgery. Like I said though- I
was under the impression that I had a tumor with 50% estrogen positivity, and only learned after the surgical pathology report that I was triple negative. This is the best case that I can give you for chemo first:

The primary tumor in your breast can shed tiny cells that can enter the blood stream, lymph system, or hang out in local tissue. These cells may not be detectable at this early stage and can remain dormant in their respective hiding places for awhile. TNBC is characterized by shedding these cells at earlier stages, from smaller tumors, and are better at setting up shop in other tissues than hormone positive tumors. These errant cells cause metastasis and recurrences (which in TNBC are often metastatic), not the tumor confined to breast tissue. So, while surgery will remove the primary tumor, it will not affect any cells if they have already dispersed. The only treatment for TNBC that can kill these cells is chemotherapy. There have been a couple of studies that have shown that chemo initiated soon after diagnosis (30 days I think) has shown to have better outcomes. I will try to find the article and post it because I cannot remember the exact numbers. There is also a study showing that inflammation from surgery can trigger metastasis, but using a NSAID like Ketorolac can decrease that effect.

Just another note because I was unclear how mastectomy, recurrence, and BRCA mutation all fit together. A recurrence is those little errant cells laying dormant and then coming back at a later date, i.e. the same cancer. TNBC is aggressive, so recurrences if they do happen are relatively quickly. That is why mastectomy and lumpectomy with radiation have same recurrence stats, because it is cells that already left, not the tumor itself. Mastectomy is recommended for mutation carriers to decrease the likelihood of a new cancer developing down the line.

Now, please try not to freak out. The majority of women beat this disease, especially when caught early! Feeling comfortable with your plan is more important than starting the same week of diagnosis. That being said, I was totally freaking out, could "feel" my tumor "burning" and "growing" and just wanted it out. My own personal brand of crazy, lol! Whatever you choose, do not let the system slow you down. I had to push for a fast surgery- my first surgical consult had me waiting seven weeks for the surgery, and I said no thank you. It is a delicate balance of getting as many facts as you can within a quick time period- and being pushy. I know it is overwhelming, and I am sorry you are here at this stage. Just a note- I am 36, I was diagnosed just before my birthday in January.

Liz
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Post Options Post Options   Thanks (0) Thanks(0)   Quote liahluey Quote  Post ReplyReply Direct Link To This Post Posted: Jul 04 2018 at 2:13am
Dear Liz, hi! Im leah. I was diagnosed with Stage 1 TNBC. Its in April 17 had my mastectomy and its almost 3 mos. now. I had my check up with my 1st onco and she said chemo right away. My family suggested to ask for a 2nd opinion, so we have been waiting for my 2nd oncologist to confer with the pathologist as she said so. Still waiting till now, july 4/18. I need help and advise. Is it okay to wait till now? Its almost 3 mos. Hope you can help me. Im almost at my wits end waitng. Thanks.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Riedline Quote  Post ReplyReply Direct Link To This Post Posted: Jul 04 2018 at 3:41am
Leah,

That sounds so stressful! I am so sorry you are going through this. It is great that you caught it early, and was the surgery successful? I am glad the surgical part is out of the way. Here is a link to the most recent article I could find on the subject, and it reviews a lot of the studies:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5788675/

And another article:

https://www.ncbi.nlm.nih.gov/pubmed/24470007

However, several studies found that a delayed time to chemotherapy did not have an effect on patient outcomes. What has your oncologist recommended? And have you been able to schedule your second opinion? Are you able to call and ask what is delaying the process? I am hoping that they can have a plan soon so you can stop stressing!

Liz

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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jul 10 2018 at 8:10am
Leah,

Here's a link about not delaying chemo.



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 liahluey Quote  Post ReplyReply Direct Link To This Post Posted: Jul 10 2018 at 10:20pm
Thank you for the info. Godbless.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote liahluey Quote  Post ReplyReply Direct Link To This Post Posted: Jul 10 2018 at 10:24pm
Dear LIz, thank you for the info. As of now I haven't talk to my 2nd opinion onco. Due to my stressing, I went to another onco thinking of a 3rd opinion. Today is the sched of my 3rd opinion. Keep you informed what the opinion of the 3rd onco. 2nd opinion onco still to arrive this week coming from singapore. Will keep intouch, hoping for your prayers. thanks.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jul 11 2018 at 8:51am
BPXDomino,

I was dx early in June, had my bi-mx the end of June and started chemo 23 daysl later.  The time between diagnosis and treatment is the worst and the days seem to be the longest.  

When there is a strong family history of breast cancer, a genetic counselor may be able to provide you with more information and advice.  The genetic test only tests for known gene mutations.  A negative finding doesn't mean there isn't a genetic connection.  It may mean they haven't identified the gene at this time or that the gene has a link to cancer.  Genetic testing is an evolving science providing much more information that we used to have when only the BRCA test was available.






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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