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How to decide about what surgery to have

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SuCityPoint View Drop Down
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    Posted: Jun 06 2019 at 1:52pm
Hi folks -  

 Tomorrow is my last chemo (4 x AC over 8 wks, 12 x Taxol & Carbo on the 2/1/1/2/1/1 cycle).  Started with a 3.4cm tumor which now cannot be felt.  No node involvement identified via PET scan.  Had the genetic testing - clean there.  BRCA negative.  58 yo, white, heavy, but otherwise healthy.

Have a consult with breast surgeon next week to decide what to do surgically (was supposed to also consult with plastic surgeon at the same time, but I was just informed that he is no longer affiliated with the hospital, so ... starting over there!).  BCL with radiation vs mastectomy vs bilateral mastectomy, and whether or not to reconstruct regardless.  I've spent the last 6 months being certain that the best thing for me would be bilateral mastectomy, but now I'm up in the air.  Things I'm concerned about:
> recurrence
> life expectancy 
> radiation
> lymphedema
> loss of sensation in chest area
> complications with reconstruction
> are implants truly cool (temperature-wise)

I'm reading Dr. Susan Love's Breast Book, and have had one consult with a rad/onc also. They both suggest that recurrence and survivability are the same for BCL w/ radiation vs mastectomy.  Do I believe it?  I have so many friends who say they wish they'd just had a bilateral in the beginning.  I know it's a personal decision, but I feel like I'm drowning in a combination of data & ignorance!

Your thoughts/guidance gratefully received.
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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jun 06 2019 at 7:53pm
I think many times it comes down to a personal choice (if you have the option between lumpectomy/radiation or mastectomy).  I was offered lumpectomy but chose bilateral mastectomy and don't regret it.  It was a personal choice and others who choose lumpectomy are just as happy with their choice.  Regarding some of your questions:  yes, there is no feeling in that area and you loose sexual feelings without nipples.  Implants are cooler to the touch.  If you are a stomach sleeper, they are uncomfortable.  I just want to be honest because sometimes they don't tell you everything.  I was recently told the life expectancy of an implant is 10 years (some last longer, others don't).  As your PS this question and what they recommend for surveillance to see if there is leakage.  Mine told me an MRI will let you know if the implant is healthy or needs to be replaced.

Breast Conservation Therapy Versus Mastectomy in Patients with T1-2N1 Triple-Negative Breast Cancer


Purpose

The aim of this study is to compare the treatment outcomes of breast conserving surgery (BCS) plus radiotherapy (RT) versus mastectomy for patients with pT1-2N1 triple-negative breast cancer (TNBC).

Conclusion

In pT1-2N1 TNBC, breast conservation therapy achieved better loco regional recurrence free, disease-free, and overall survival rates compared with mastectomy.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6192926/







Edited by 123Donna - Jun 06 2019 at 11:46pm
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 SuCityPoint Quote  Post ReplyReply Direct Link To This Post Posted: Jun 06 2019 at 10:36pm
Very helpful, Donna.  Thanks on all counts.  What an adventure this is!
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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jun 06 2019 at 11:53pm
It sure is! There are so many decisions and choices to make in just a short amount of time.  We have to learn so much quickly, ask questions, research and try to figure out what is best for each of us.  It's not a one size fits all and each of our cancers are unique, making the decision making difficult.  It's best to seek opinions, more than one, and ask as many questions as possible.  Go with your gut, what you think is best for you. The study I posted showed a slight benefit to lumpectomy/radiation over mastectomy and I believe it's because of radiation therapy. There was a discussion on the radiation forum talking about the benefits for early stage TNBC. 
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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Meadow View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Meadow Quote  Post ReplyReply Direct Link To This Post Posted: Jun 07 2019 at 2:00am
Bilateral was the only real choice for me because I have a BRCA1 mutation. I had it done in 2009, with expanders placed immediately and the rest of reconstructions process (fills and exchange to implants) over the next 9 months. We had to take it slow because I was doing chemo. I was told up front that because I am thin, the reconstructed breasts would not look great (not natural looking, rippling) on their own but would look natural with clothing, which has turned out to be ture. The reconstructed breasts have no sensation except at the very edges, but there is full sensation in between them and the rest of my chest area. The breasts are truly cool - unless the ambient temperature is near or above body temperature. As to complications, I had an internal bleed a few weeks after my exchange surgery and had to have a quick day surgery to clear out the clot and put in some stitches. It was not a big deal. I had a couple elective revision surgeries a few years out to increase symmetry - they were day surgeries, also not a big deal. I had an MRI a couple months ago, and the implants are fine - no need to replace.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SuCityPoint Quote  Post ReplyReply Direct Link To This Post Posted: Jun 11 2019 at 10:50pm
Thanks Meadow.  Lots of helpful information.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SuCityPoint Quote  Post ReplyReply Direct Link To This Post Posted: Jun 11 2019 at 10:59pm
Thanks Donna.  Meeting with the surgeon tomorrow.  Mind spinning!  I'd be very happy to let someone else make the decision for me, as I can see the advantages to each approach. I think you're right - just have to figure out what's going to be best for me.  With any luck that will become more clear tomorrow.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Jun 12 2019 at 1:23am
Ask if you can get a breast MRI with contrast, see if it looks all clear. Ask about the location of the tissue they need to remove - will they be able to get nice wide margins? Is it far enough away from the chest wall? If your breasts test clear and the surgeon says its easily removable, I'd seriously consider the lumpectomy and radiation. Thats what I had and it worked. When I had a recurrence with a totally new cancer 7 years later I got proof how rare a recurrence is after a successful lumpectomy and radiation. There are NO treatment protocols, theres been no clinical trials because there are no patients to use. I searched everywhere and ended up at MD Anderson. They just had to make up a treatment plan. The high incidence of recurrence with TNBC is NOT cancer in the breast, its recurrence elsewhere. That happens with lumpectomy and mastectomy - what they say is true. I've had both the lumpectomy and radiation and a double mastectomy. Big difference - like a tonsilectomy versus a hip replacement - small surgery versus Large surgery. The life long differences are huge as well. Even after all I've been thru I'd advise taking the less severe surgery if your medical, surgical and radiation oncologists say your situation puts you at equal odds for long term survival. Best wishes for clarily after your meetings! Kelly
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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Post Options Post Options   Thanks (0) Thanks(0)   Quote SuCityPoint Quote  Post ReplyReply Direct Link To This Post Posted: Jun 12 2019 at 7:56am
Very helpful - thanks so much!
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