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Jan 22, 2021 10:42AM
I don't think you are nearly as unique as it may seem. Two reasons for this.
First, if you read the studies on satisfaction with MX results, with or without reconstruction, the conclusion is usually that the majority of people are happy with their choice of surgery and with the results. But the majority isn't everyone. Even the most recent study posted by BCO says that "Nearly 75% of women surveyed who opted for no breast reconstruction after mastectomy were satisfied with the results", which means that 25% of those who opted for no reconstruction were not satisfied with their results. That's a lot of women. And that doesn't even get into the issue of those who would prefer reconstruction but couldn't get it - people like yourself.
But why don't we hear from these people? Well, that's the second thing. I think there is pressure on us to be happy with our choice and with our results. Some of it is external. I think there is a feeling within the medical community and the non-cancer community (our families and friends) that we should be pleased that our cancer was treated and we are healthy and somehow complaining about physical appearance is focusing on the wrong thing and not looking at the big picture. Get over it and move on. And some of it is internal. While a few of us have no choice but to have a MX, most patients who have a BMX are making that choice for themselves - they could have had a lumpectomy + rads or they could have had a UMX, but they have opted to have a BMX. There may be very good reasons for that - I am not questioning the decision - but if someone chooses to have such a significant surgery, how likely are they to openly and publicly say "that didn't work out the way I thought and I'm not happy with the results"?
When I was diagnosed back in 2005, although I had a teeny Stage I diagnosis, I had extensive high grade DCIS, and a MX was my only surgical option. I did not want to have a MX - it was not what I would ever have chosen for myself. I had successful implant reconstruction but it took me years to get comfortable with it (on-going brutal phantom itching certainly didn't help). What I noticed back then, and what I posted about quite a bit in those days, was the fact that there seemed to be two very separate groups on this board when it came to discussions of MXs and reconstruction results. Those who could have had a lumpectomy but opted to have a MX (usually a BMX) where almost universally happy with their results, whether they chose to go flat or have reconstruction. Those like me who never wanted to have a MX but had no choice - we were a lot more open about our problems and dissatisfaction. And here again, this doesn't even get into your situation, where you were effectively forced to have the BMX (as the most logical surgical choice after a 2nd diagnosis, and with the BRCA mutation) and your reconstruction failed.
I have been looking for studies and research on this subject. Not much yet, but a few studies, most of which unfortunately I can't fully access: Psychosocial Functioning in Women with Early Breast Cancer Treated with Breast Surgery With or Without Immediate Breast Reconstruction
"There were 303 early-stage breast cancer patients: 155 underwent BCS (breast-conserving surgery), 78 MA (mastectomy alone), and 70 IBR (immediate breast reconstruction).... breast satisfaction was highest in BCS (72.1, SD 19.6), followed by IBR (60.0, SD 18.0), and MA (49.9, SD 78.0) at 12 months, p < 0.001. Immediate breast reconstruction had similar psychosocial well-being (69.9, SD 20.6) compared with BCS (78.5, SD 20.6), p = 0.07. Conclusions
Our study found that in a multidisciplinary breast cancer centre where all three breast ablative and reconstruction options are available to early breast cancer patients, either BCS or IBR can be used to provide patients with a higher degree of satisfaction and psychosocial well-being compared with MA in the long-term."
. Health-related quality of life following breast reconstruction compared to total mastectomy and breast-conserving surgery among breast cancer survivors: a systematic review and meta-analysis
"Sixteen of the 18 eligible studies with BR (breast reconstruction) (n = 1474) and BCS (breast conservation surgery) (n = 2612) or M (mastectomy) (n = 1458) groups were included in the meta-analysis. The BR group exhibited a better physical health (k = 12; 0.1, 95% CI 0.04, 0.24) and body image (k = 12; 0.50, 95% CI 0.10, 0.89) than the M group. However, the two groups exhibited comparable social health (k = 13; 0.1, 95% CI −0.07, 0.37), emotional health (k = 13; −0.08, 95% CI − 0.41, 0.25), global health (k = 7; 0.1, 95% CI − 0.01, 0.27), and sexual health (k =11; 0.2, 95% CI − 0.02,0.57). There was no clear evidence of the superiority of BR to BCS for all the six domains. These results suggest that HR-QoL outcomes in BR and BCS groups are better than the M group. Therefore, women opting for BR or BCS are likely to report fairly better HR-QoL outcomes than M."
. Effect of cosmetic outcome on quality of life after breast cancer surgery
"QoL outcomes, including for social and role functioning, fatigue, pain, body image, and arm symptoms, were significantly better in the BCS (breast conserving surgery) and TMIR (total mastectomy with immediate reconstruction) groups than in the TM (total mastectomy) group (p<0.05 each). BIS (body image scale) was significantly better in the BCS than in the TM or TMIR group (p<0.001 each). In the BCS and TMIR groups, general QoL factors were not significantly associated with objective cosmetic outcomes, except for body image in the QLQ-BR23. In contrast, patients with poorer BIS score reported lower QoL in almost all items of the QLQ-C30, BR23, and HADS (p<0.05 each).
Dx 9/15/2005 Right, 7cm+, DCIS-Mi, Stage IA, Gr 3, 0/3 nodes, ER+/PR- ** Dx 01/16/2019 Left, 8mm, IDC, Stage IA, Gr 2, 0/3 nodes, ER+/PR-, HER2- (FISH) ** Surgery 11/30/2005 MX Right, 03/06/2019 MX Left ** Hormonal Therapy 05/2019 Letrozole