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Surgical anxiety

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Canapoli View Drop Down
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    Posted: Sep 21 2017 at 2:41pm
Canapoli, hi I just wanted to see if it's normal to have a lot of anxiety in decision making about what type of surgery to have? I feel so torn over lumpectomy that my dr keeps suggesting vs 1 side mastectomy with reconstruction, hopefully. They keep saying reoccurrence stats are the same for both. I had chemo first and now am waiting for surgery date. Please feel free to share experiences. I would love to hear all to help me decide. So torn
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gordon15 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: Sep 22 2017 at 5:39pm
Dear Canapoli: In 2008  My wife had non-TNBC lumpectomy(twice) surgery in 2008, but  the surgeon had to do it twice, because it had "lobular" (ILC) meaning... Infiltrating Lobular Cancer.,  it was a situation where the surgeon's incision did not get it all, and she had a tiny(.3mm)( "point 3 millimeters in a 3 millimeter lymph node) cancer in one lymph node. We had no idea in 2008 that this cancer might show up later, and in 2015 ........ I just want you to know, my wife says today, she wishes she had both breasts removed.

In 2015 my wife got TNBC in her other breast, much worse. Of course, there is no way to calculate if her 2008 cancer changed, genetically, but please be aware, any chemotherapy and radiation cause "mutations" in the DNA.

The doctors she has now are at UCSan Diego/Moores Cancer Center, they have done a bunch of genetic testing, which we are very thankful for....all cases are not the same,

if you DO NOT have any cancer in the lymph nodes, that would surely weigh on your decision, I'm sure there are members here that have opinions on what surgery is right for you.

My opinion, from what I have gone through with my wife, is if it's TNBC , even in one breast, my opinion, as a husband, is mastectomy, for my wife was the safest thing to do.

I would ask your doctors if your are Triple Negative Breast Cancer, after a lumpectomy, what are the chances of a local-recurrance, they call it a "regional" perhaps, of the cancer coming back

wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16
PET scan stable 9-2016/ 1-2017
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SurvivorGirl View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SurvivorGirl Quote  Post ReplyReply Direct Link To This Post Posted: Sep 23 2017 at 4:28pm
I feel it is quite normal to be anxious. This is a huge decision that ultimately only you can make. I completed 5 months of chemo and then chose a double mastectomy with reconstruction. For me I needed to know that I had done everything I could have to prevent a recurrence. That was just my mindset. I wanted to do whatever I could to hopefully not go through this again.
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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: Sep 26 2017 at 7:27am
Canapoli,

It's normal to have anxiety while trying to make these decisions.  I had many sleepless nights trying to decide which path to take.  Can you share what stage you were when diagnosed?  How big was the tumor?  Were any nodes involved?  Do you have a family history of breast cancer?  Have they done any genetic testing?


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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Canapoli View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Canapoli Quote  Post ReplyReply Direct Link To This Post Posted: Sep 26 2017 at 7:17pm
Hi 123Donna,
They said early stage just about 2cm size lump, no nodes that they could feel or see anything significant on US. No family history, genetics was negative. Neoadjuvant chemo therapy for AC and taxol. Great response to chemo, tumor shrunk, despite 1 more chemo dose after US. So hoping the chemo kept on working. Saw a second surgeon today, very experienced older woman, who explained that anything left on imaging could be "dead cells". She also went through chemo and cancer. She highly recommended lumpectomy because the size of the tumour was so small, then radiation depending on margins, etc. Stray cells is what keeps coming back to me, but I guess there is no way to tell how many cells might hang around in your body that are microscopic. Also doing sentinel node surgery with it . I felt better after talking with her.
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Post Options Post Options   Thanks (1) Thanks(1)   Quote SusaninVA Quote  Post ReplyReply Direct Link To This Post Posted: Sep 28 2017 at 4:54pm
Hi Canapoli,  I had a lumpectomy two years ago and am doing fine.  After reading numerous articles and research, I came to the conclusion that was a good choice for my situation. (2.8 cm triple negative tumor with a trail of grade 3 DCIS).   I think what helped me the most was when my radiation oncologist told me that medically, I did not need a mastectomy.  But this is a highly personal decision, and no one knows what the future holds.  I can understand Gordon's wife looking back and wishing she had done the mastectomy at the beginning.  It's just that we don't have a crystal ball and it is a major, heart wrenching decision.  I think you need to determine what is good and right for you as an individual.  If having a mastectomy helps you to sleep better at night, I honor that choice.  I think I have spent more time stressing over whether the cancer cells traveled to any other organs in my body.  After experiencing headaches for the past two months, I just had an MRI for that, and thankfully, everything is fine.  But, boy, do you worry until you find out!  I think that is what has kept me up at night lately.  Being a triple negative cancer survivor, I think we will always worry if something doesn't feel right.  Hopefully the silver lining is that we cherish our time and do the things we want and need to do.  I have learned many lessons from this and am thankful to still be here.  I'm sending many good wishes for your surgery, whatever you decide!

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gordon15 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 01 2017 at 5:27pm
I believe the " 5-yr survival rate without a recurrence" is the same for lumpectomy or mastectomy. That is what we were told, if in both situations, the patient had chemo and radiation.
wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16
PET scan stable 9-2016/ 1-2017
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