I was on a HuffPost Live video about options after mastectomy

Bravo Barbara - excellent job - you did us proud!  I had huge problems with buffering but managed to see most of it.

But I am seething - did that Jewel woman seriously claim at the beginning of the piece that women who have reconstruction have better survival rates?!! I am speechless.

As for her comment about drive-through mastectomies ... what?! Medical science has known for years that patients recover better at home than in hospital and that dawdling in a bed can be very detrimental to recovery. Here in the UK where insurance is not an issue it is quite normal to leave hospital with drains in quite soon after surgery. Personally I couldn't wait to get home.

Anyway, Barbara, very well done. You came over very well indeed. Much better than the doc who appeared to have her webcam positioned down a toilet bowl :-)

I haven't watched the whole video yet (keep on getting interupted) but I did want to second what greenfrog said.  Jewel's claim left me sputtering!  Reconstruction has nothing to do with survival rates per se, but I would bet the women for whom reconstruction is an option of less agressive cancers and therefore have to have less treatment.

Barbara - you did a great job. I thought the other participants other than the misinformed Jewel were very good as well. I find it amazing that she is a 'spokesperson' for reconstruction when she doesn't seem to know some very basic information. 

My doctors were all shocked that I didn't want recon (immediate) and I felt some pressure. DH said the scars on the reconstructed breasts upset him more than my mx scars. No one mentioned scars I noticed.

As for drive thru mx, I stayed one night when I had my bilateral but when I did my original lumpectomy and axillary dissection I was sent home the same day. And I shouldn't have been. I was vomiting, in a lot of pain. ONe night would have made a huge difference. So when I had my bilateral I informed the surgeon I would not be going home without staying the night given my prior experience. Don't know if partial mx (lumpectomy) is considered the same as a mx. And it was a harder surgery on my by far probably due to the lymph node removal and less nerves getting cut.

 Thanks again for representing us so well!

Annie

Barbara, you were awesome! Thanks for sharing.

I was disappointed to learn, though, that reconstruction is not very successful if you have had radiation. I had lumpectomy and radiation in 2008. And was diagnosed with a new primary in the form of DCIS in the opposite breast just recently for which I again had lumpectomy and I don't want radiation so now I am planning on having the BMX. The reconstruction is something I am seriously considering.

Great job Barbara!

I also commented in the reconstruction forum.  Like others here, I thought Jewel did not have as much information as she should and felt she was approaching the problem as though every woman would definitely want reconstruction to start with.  It is good that you were there to provide perspective. 

It's clear Jewel is trying to do good things, but I cannot imagine why she would state that women who have recon live longer.  My goodness.....that is really not a good thought and I would love to see the studies on that.  If there were valid studies that showed recon extended survivorship, it would no longer be a cosmetic procedure, but would be considered theraputic and therefore generally required, like it or not, by oncologists as part of bc treatment.  Since we do not have that, I suspect there is little validation to her comment.

If reconstruction extends survival I will eat my own head.

Barbara, you did a great job. Thank you! In all, I think it was a fairly balanced discussion that allowed for differing views. Agree that Jewel needs to be better informed if she is going to represent an issue. She didn't know about nipple sparing? Please. And, Painterly, certain kinds of recon, such as implants, are not very successful after radiation. There are other choices though, such as the autologous tissue transfer (DIEP, GAP, etc) and fat grafting that produce better results.




My main disappointment was the response to Barbara's comment that some women felt a little pressured to have reconstruction. It was interpreted as women have too much info to digest (I forget we have such little heads) during a BC diagnosis and that deciding about recon in addition to cancer TX is too much pressure. I think the point is that the pressure is felt in relation to the idea that recon would be the natural preference - which implies women would feel less whole without breasts than with recon. And I am so pleased that Barbara made the point that if she couldn't have her own breasts that she didn't want any others. Also, in metropolitan areas plastic surgery and breast recon is big business, and that is also part of the pressure the women posting here are experiencing. I doubt the surgeons and medical system's pressure for women to have recon immediately is all about better results.




Sure, in areas where recon itself and various choices of recon are limited (I believe this is more to the point Jewel is speaking), women might not receive adequate info at the time of their diagnosis. Women definitely need to be made aware of all of their options, and where to access them if not available locally. Also, there was a time when the drive thru MX's were an issue because insurance co's were trying to cut costs (with all surgery-related hospital stays), and that was before people welcomed hightailing it out of a hospital out of fear of contracting a bacterial infection. The focus on drive-thru MX's as an issue seems a bit dated, which is kind of how Jewel's total knowledge about recon came across to me. If she cares about this issue as much as it appears she does, she needs to do some homework and get up to speed. If our little heads can do it during the time of a BC diagnosis, I'm sure she can. And I can only hope she fixes that blunder about living longer because of recon - perhaps the info she had reported something such as "greater quality of life" vs longer life. In that case I might think she is just a dingbat needing an issue to garner some publicity.




I am just thrilled that Barbara was part of the conversation to present the breast free viewpoint, especially in light of Pink October and National Breast Recon Day on Oct 17. By the way, Jewel has partnered with the ASPS to promote this day. Here is a link with that info, and it also contains info about their other promotional events.




http://www.bra-day.com/

Painterly, I had a bilateral mastectomy after radiation, and I was told that autologous transplant was no problem and that silicon or saline might be possible as well. In the end, I decided to go without. But my understanding was that the longer I waited, the more likely the success of artificial implants since it would give the radiated skin more time to regain pliancy. Autologous transplant didn't seem to pose any issues at all. So don't despair if you have your heart set on reconstruction. Consult an experienced breast-cancer plastic surgeon, though.

 

Oh ok so now I understand. The American Society of Plastic Surgeons had appointed Jewel as their official spokesperson for their first reconstruction awareness day.

So basically it is corporate sponsorship dressed up as altruism. Lots of vested interests cashing in on women and their boobs (or lack of them).

Vile.

I did a little Pubmed search.  The survival comment probably comes from here:

http://www.ncbi.nlm.nih.gov/pubmed/22487264

Far from definitive.  Studies like that are always confounded by a lot of factors.  You just can't control for everything.  I don't myself believe the reconstruction process is improving disease-specific survival.  It's far more likely that if you've got extra-bad things going on either with your cancer or your health in general, you're going to skip extra surgery.

Edited to add:  Barbara, I'm so glad you were part of that discussion and got to say what you did.  It does bug me this national organization has a spokesperson with no personal experience of the disease.

I deleted my post as it was only ramblings.

Yes indeed Outfield. Uncovering the funding trail isn't easy. I shall have a root around when I get a moment to find out which piper called this particular tune.

I feel a certain pity for Jewel - her heart is probably in the right place. These people are all at the behest of their advisors/managers as to what they should do to enhance their public image. I notice she is self-described as  a "humanitarian". Yikes. Up there with Ghandi eh?

Barbara, You did a great job, and I am really glad that you were there. The hostess with the mostest drove me nuts the way she kept saying "massectomy" instead of "mastectomy." If you are going to do a half-hour segment on the subject, maybe read the word at least.

Like the others, I am just aghast that this ditz-brain Jewel would seriously sit there and claim that recon ups survival rates. Later, after you spoke, she tried to fudge it into "being empowered improves survival." WTF! Seriously???!!! I also loved (not) that she spoke to you in this condescending tone and congratulated you on being educated. Bwaaaaaaa!

Now, my main question is who she works for. She obviosuly has no knowledge on the subject, apart from 3-4 talking points. She talked about taking a break from work to be a mommy, so maybe she got this gig for pocket money, so she doesn't have to tour for a while. The obvious answer would be the Association of Plastic Surgeons. But isn't it unethical for her to be a paid shill and presenting herself as a concerned humanitarian?