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Old 11-26-2013, 07:07 PM   #21
'lizbeth
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Re: mastectomy versus lumpectomy for HER2

Ack! I wrote a long rambling post and it disappeared!

@AussieGirl - thanks for the information
@Kaa - I completely understand your sister's attachment to only having a lumpectomy. Totally understandable.
@my Irish friends - oooh, is this like a highlander/lowlander thing? Love you both no matter how humble or vain you may be!
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Old 11-30-2013, 08:11 AM   #22
norkdo
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Re: mastectomy versus lumpectomy for HER2

Oops! tee hee hee. I just reread my post and no wonder Trish said that! hahaha. so sry (note to self: pls review post prior to posting!) I meant my mom grew up in a convent in Ireland and being "vain" was like the worst sin possible for many Irish girls raised like that! hahaha....sry for the misunderstanding....
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fall 2008: mammo of rt breast worrisome so am asked to redo mammo and have ultrasound of rt breast.I delay it til january 2009 and the results are "no cancer in rt breast. phew."
found plum sized lump in right breast the day before my dad died: April 17th 2011. saw it in mirror, while i was wearing a top, examining my figure after losing 10 lbs on dr. bernstein diet.
diagnosed may 10 2011

mast/lymphectomy: june 7 2011, 5/20 cancerous nodes. stage 3a before radiation oncologist during our first mtg on july 15th says he found cancer on the lymph node of my breast bone. Now stage 3b.
her2+++, EN-, PN-. Rt brst tumors:3 at onset, 4.5 cm was the big one
chemos: 3fec's followed by 3 taxotere, total of 18 wks chemo. sept: halfway thru chemo the mastectomy scar decides to open and ooze pus. (not healed before chemo) eventually with canasten powder sent by friend in ny (illegal in canada) it heals.
radiations:although scheduled to begin 25 january 2012, I am so terrified by it (rads cause other cancers) I don't start til february, miss a bunch, reschedule them all and finally finish 35 rads mid april. reason for 7 extra atop the 28 scheduled is that when i first met my rads oncologist he said he saw a tumor on the lymph node of my breastbone. extra 7 are special kind of beam used for that lymphnode. rads onc tells me nobody ever took so long to do rads so he cannot speak for effectiveness. trials had been done only on consecutive days so......we'll see.....
10 mos of herceptin started 6 wks into chemo. canadian onc says 10 mos is just as effective as the full yr recommended by dr. slamon......so we'll see..completed july 2012.
Sept 18 2012: reconstruction and 3 drains. fails. i wear antibiotic pouch on my job for two months and have 60 consecutive days visiting a nursing centre where they apply burn victims' silver paper and clean the oozing infection daily. silicone leaks out daily. plastic surgeon in caribbean. emergency dept wont remove "his" work. He finally appears and orders me in into an emergency removal of implant. I make him promise no drains and I get my way. No infection as a result. Chest looks like a map of Brazil. Had a perfectly good left breast on Sept 17th but surgeon wanted to "save another woman an operation" ? so he had crashed two operations together on my left breast, foregoing the intermediary operation where you install an expander. the first surgeon a year earlier had flat out refused to waste five hours on his feet taking both boobs. flat out refusal. between the canadian health system saving money and both these asses, I got screwed. who knows when i can next get enough time off work (i work for myself and have no substitute when my husband is on contract) to get boobs again. arrrgh.


I have a blog where I document this trip and vent.
www.nora'scancerblog.blogspot.com . I stopped the blog before radiation. I think the steroids made me more angry and depressed and i just hated reading it anymore
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Old 11-30-2013, 10:51 AM   #23
chekmark
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Re: mastectomy versus lumpectomy for HER2

I agree with the others, it's a personal choice however I do want to point out one thing. Due to the location of my tumour I was told I would need recon anyway or that I would be horribly deformed. I didn't have much time and panicked and since my oncologist said mast I went with the mast but my surgeon said I didn't need the mast but would be deformed. Sometimes I wonder if I did the right thing but it's too late now. Recon was not fun, kinda brutal for the first few weeks but doable. I was also 49 when diagnosed. Weigh out the pros and cons. I struggled with self esteem issues, no hair, no breast but that all passed. I had to wait a year for recon and I think that was the worst for me, I just wanted recon and to look normal again. My cancer was never seen on a mammo, even after they found it so I don't trust mammos anyway. She has a lot to think about, there is no wrong decision. Good luck.
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DX Sept 30 2010 at the age of 49. Oh crap! 1.5 cm idc, stage 1 grade 3 er/pr+, her2+ no lymph nodes, mastectomy Oct/10. Started 6 rounds of TCH Dec/10 and will continue herceptin until Nov /11 and just started femara.
Stray kitten found my lump while I was playing with it. It is now my pet and my dog is not real happy about that.
Mammo good
last herceptin 11/21/11 YAY
reconstruction 12/09/11
Chapter closed 12/10/11, hopefully, fingers crossed
Bone scan, chest xray, clear
04/27/12 Expander removed, implant put in, ahh sigh of relief, much more comfortable
Sept 30, 2014, 4 years NED
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Old 11-30-2013, 01:29 PM   #24
CoolBreeze
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Re: mastectomy versus lumpectomy for HER2

I didn't read any of the answers but I do want to remind you this is your sister's decision. My understanding is that a lumpectomy and mastectomy have the same recurrance rates but that is up to her doctor to discuss with her, not strangers on the internet.

What I am going to tell you is my own experience with mastectomy. I had no choice but to have MX as I had multi-focal areas of invasive cancer and that calls for Mx always. I had a right Mx with tissue expander and left my left breast alone. Immediately after the surgery to put in the implant, I began having problems. Back problems, shoulder problems....I was diagnosed with frozen shoulder. It was in my right arm, and incredibly painful. It lasted well over a year, with numerous steroid shots to control it. Then it hit my left arm and then my right again. Not only that, but I have had some terrible lower back pain and cannot lie on my stomach (my preferred position). I have a constant itch in the missing breast, to the point where I have scratched holes in my skin. (It's numb so I can't feel it.)

I am Stage IV now with mets to the liver. So it is staying as I can't subject myself to another surgery. But if I had stayed a lower stage, by now I would have taken this implant out and tried without it. Although I think cutting pockets in our chest muscles is something not everybody recovers from anyway.

So, to make a long story short and if I could go back knowing what I know now, there is ZERO chance I would have had the mastectomy. I didn't want it in the first place and have had nothing but trouble since. It is hard enough being stage IV and having to undergo everything that I have: 4 years of chemo, half my liver removed, gamma knife, sepsis, c-diff, without problems with arms and back.

Mastectomies are not benign by any means, for everybody. It is, most definitely, an amputation.

If her doctor says her odds don't change with either surgery, than dont' try to talk her into mastectomy. The most aggressive choice is not always the best choice, it is just the most aggressive.

Good luck to your sister.
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08/17/09 Dx'd.
Multifocal/multicentric IDC, largest 3.4 cm, associated ADH, LCIS, DCIS
HER2+ ER+/PR- Grade 3, Node Negative

10/20/2009: Right mastectomy, reconstruction with TE
12/02/2009: Six rounds TCH, switched to Taxol halfway through due to neuropathy
03/31/2010: Finished chemo
05/01/2010: Began tamoxifen, the worst drug ever
11/18/2010: Reconstruction completed
12/02/2010: Finished herceptin
05/21/2011: Liver Mets. Quit Tamoxifen
06/22/2011: Navelbine/Zometa/Herceptin
10/03/2011: Liver Resection, left lobe. Microwave ablation, right lobe - going for cure!
11/26/2011: C-Diff Superbug Infection, "worst case doctor had seen in 20 years"
03/28/2012: Progression in ablated section of the liver - no more cure. Started Abraxane, continue herceptin/zometa
10/10/2012: Progression continues, started Halaven, along with herceptin and zometa.
01/15/2013: Progression continues, started Gemzar and Perjeta, an unusual combo, continuing with herceptin and zometa
03/13/2013: Quit Gemzar, body just won't handle it. Staying on herceptin, zometa and perjeta.
04/03/2013: CT shows 50% regression in tumor, so am starting back on Gemzar with dose reduction, staying with perjeta/herceptin/zometa. Can't argue with success!
05/09/2013: Discussing SBRT with Radiology due to inability of bone marrow to recover from chemo.
06/07/2013: Fiducial placement for SBRT
07/03/2013: Chemo discontinued, on Perjeta, Herceptin and Zometa alone
07/25/2013: SBRT (gamma knife) begins
08/01/2013: SBRT completed
08/15/2013: STABLE! continuing with Perjeta, Herceptin, Zometa
06/18/2014: ***** NED!!!!***** continuing with Perjeta, Herceptin, Zometa
01/29/2014: Still NED. continuing with Perjeta, Herceptin. Zometa lowered to every 3 months instead of monthly.
11/08/2015: Progression throughout abdomen and lungs. Started TDM-1, aka Kadcyla. Other meds discontinued. Remission was nice while it lasted.

5/27/18: Stable. Kadcyla put me right back in the barn. I have two teeny spots on my lungs that are metabolically inactive, and liver is clean.

I’m beating this MFer. I was 51 when this started and had two kids, 22 and 12. Now I’m 60. My oldest got married and trying to start s family. My youngesg graduates from Caltech this June. My stepdaughter gave me grandkids. Life is fantastic.
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