tag:blogger.com,1999:blog-2008503505414285765.post5317135811889838529..comments2023-07-01T05:57:07.467-07:00Comments on Calling the Shots: Going Off the DIEP EndBeth L. Gainerhttp://www.blogger.com/profile/08780737397716824019noreply@blogger.comBlogger26125tag:blogger.com,1999:blog-2008503505414285765.post-12028447648124916462012-09-11T09:36:35.550-07:002012-09-11T09:36:35.550-07:00Hi Anonymous,
Thank you for reading and commentin...Hi Anonymous,<br /><br />Thank you for reading and commenting on my posting. The decision to get a mastectomy and reconstruction, as well as the type of reconstruction one opts for, is a deeply personal one. I can understand your apprehension after reading my posting. I'd recommend asking your surgeon about chronic pain after the surgery and see what he says.<br /><br />In terms of the DIEP flap, despite everything, I would certainly no-doubt, 100% do it again. It was the right choice for me. Of course, I can't speak for anyone else, and this is a challenging decision that only you can make.<br /><br />The point of the posting was to tell the truth about a possible result of the DIEP flap, which in my case, compromised some of my abdominal wall. Others may not be in chronic pain. I have been undergoing acupuncture now, and am pleased to report that the pain has subsided.<br /><br />The best thing you can do is to bring it up to your surgeon and make your informed decision over what type of surgery -- if any -- you want done.<br /><br />Good luck, and just focus on making the decision that is best for you.<br /><br /><br /><br />Beth L. Gainerhttps://www.blogger.com/profile/08780737397716824019noreply@blogger.comtag:blogger.com,1999:blog-2008503505414285765.post-10259267174506640382012-09-11T09:28:55.736-07:002012-09-11T09:28:55.736-07:00Thank you for sharing the information about your D...Thank you for sharing the information about your DIEP flap. As in your case, belly fat was used to create my new breasts, and I did go a size or two down, which didn't bother me.<br /><br />However, to get part of one artery, he did have to cut into some abdominal muscle, and that is where the problems started. I understand why he had to do this, so I'm not angry at this point. When I wrote the post, I was angry about the pain. My point of view was that my surgeon should have told me about possible chronic pain upfront.Beth L. Gainerhttps://www.blogger.com/profile/08780737397716824019noreply@blogger.comtag:blogger.com,1999:blog-2008503505414285765.post-28812833678946833492012-09-08T11:38:07.337-07:002012-09-08T11:38:07.337-07:00I am having my first surgical consult in two days....I am having my first surgical consult in two days. I had hoped to have a DIEP flap too, but having read about your chronic pain I am now very apprehensive. My plastic surgeon says he has done about 100 thus far, and I wonder if that is enough. Maybe I should just have my breasts removed and get implants or wear a prosthesis instead. I cannot bear the thought of chronic pain while working full time and having an active family with two children. If you had it do over again would you really opt for the DIEP again or would you consider other options. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2008503505414285765.post-71620421983229837452012-09-05T20:58:08.978-07:002012-09-05T20:58:08.978-07:00Beth: thank you for shaing your story. I discovere...Beth: thank you for shaing your story. I discovered your blog looking for help for the terrific sporotic itching of my reconstructqed breast. It helps to know that I am not alone. When I had my DIEP procedure, my surgeon to spare me the potential of weakened tummy muscles, used my fat tissue to build my new breast. The fat was cut loose and moved to my chest where he reattached arteries to provide circulation. This required some specialized micro surgery techniques. For your readers who are considering a DIEP procedure, ask about this modified version. It may result in a smaller breast, but it is worth it.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2008503505414285765.post-74748261843695882012012-03-11T19:00:31.814-07:002012-03-11T19:00:31.814-07:00Dear Anonymous. Thank you for reading and your emp...Dear Anonymous. Thank you for reading and your empathy. The results of my medical treatments is something I have to live with every day. The pain makes me sad, but I'm alive, and that's important to me.Beth L. Gainerhttps://www.blogger.com/profile/08780737397716824019noreply@blogger.comtag:blogger.com,1999:blog-2008503505414285765.post-65890685438459306992012-03-10T00:41:27.134-08:002012-03-10T00:41:27.134-08:00Beth, I had no idea you were dealing with this sor...Beth, I had no idea you were dealing with this sort of chronic pain. Sad!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2008503505414285765.post-35620541720036963112012-01-03T10:40:08.488-08:002012-01-03T10:40:08.488-08:00Jill,
Thank you so much for reading my posting an...Jill,<br /><br />Thank you so much for reading my posting and commenting. I know plastic surgeons work hard at their craft, and like I said in my post, I have a lot of gratitude to my team of doctors. I think at times, some surgeons don't mention that there might be long-term pain as a result of the surgery. I wish I had been told this; I would've still gone through with the surgery, but I would've been better informed.<br /><br />Thanks again for your readership,<br /><br />BethBeth L. Gainerhttps://www.blogger.com/profile/08780737397716824019noreply@blogger.comtag:blogger.com,1999:blog-2008503505414285765.post-55969568915644082562012-01-03T05:34:41.901-08:002012-01-03T05:34:41.901-08:00Dear Beth,
As a plastic surgeon in Australia I...Dear Beth, <br />As a plastic surgeon in Australia I'd like to thank you for your honest account of your surgical experience. <br />I'm sorry that you had this experience. It's most enlightening for me to read about it, and to read of the experiences of other commenters.<br />Thank you for your honesty, candour and efforts to ensure that other women who are in the same situation receive the best possible information.<br />Sincerely,<br />JillJillhttps://twitter.com/#!/jilltomlinsonnoreply@blogger.comtag:blogger.com,1999:blog-2008503505414285765.post-52006005366482061272011-12-08T15:50:44.495-08:002011-12-08T15:50:44.495-08:00Thanks, Kathi, for your continued support and unde...Thanks, Kathi, for your continued support and understanding. I'm sure you've dealt with a lot of patients whose surgery had gone awry. I agree that it is a Frankenstein type of procedure. And I agree that plastic surgeons should experience what it's like; so many doctors don't give true informed consent.<br /><br />Thank you also for the encouragement regarding my book. I just don't want others to have gone through all I went through. Unfortunately, I had to learn it all the hard way.Beth L. Gainerhttps://www.blogger.com/profile/08780737397716824019noreply@blogger.comtag:blogger.com,1999:blog-2008503505414285765.post-27023421920156898592011-12-06T19:32:17.168-08:002011-12-06T19:32:17.168-08:00Oh, Beth...I know you read my post last March on r...Oh, Beth...I know you read my post last March on reconstruction. And I knew you'd had a rough experience. I'm so sorry it was as bad as it was. Sigh. Even when you think the surgeons are providing you with thorough information, they're not, I find. And I say this as someone who works with a lot of surgeons in my job. The plastic surgeons may be among the most blinkered. They just really don't know. Until every one of them goes through a similar Frankenstein experience, or at the very least provides a way to ensure that they are receiving long-term, honest feedback from their patients, they will never get it. I've seen too many post-surgical trainwrecks in my job ever to take what any of them says at face value. I'm so glad you are still here, though. And I'm very glad you're writing your book.<br /><br />xoxo, KathiThe Accidental Amazonhttp://accidentalamazon.comnoreply@blogger.comtag:blogger.com,1999:blog-2008503505414285765.post-36909246642008670502011-12-05T12:10:40.883-08:002011-12-05T12:10:40.883-08:00Hi Brenda,
I am very glad you are in no more pain...Hi Brenda,<br /><br />I am very glad you are in no more pain. That's a huge relief, I'm sure, although the itching is not exactly great either. It helps me to know I'm not alone when I discuss this type of pain and that other people, like you, totally get it.<br /><br />I hope the itching subsides, and you can find yourself feeling healed.Beth L. Gainerhttps://www.blogger.com/profile/08780737397716824019noreply@blogger.comtag:blogger.com,1999:blog-2008503505414285765.post-65497878911924787642011-12-05T11:19:23.622-08:002011-12-05T11:19:23.622-08:00Boy can I identify with this! I sometimes think th...Boy can I identify with this! I sometimes think the list of things our doctors & surgeons fail to tell us is longer than the list they do mention. The abdominal pain from a DIEP makes it difficult to concentrate on anything else. After five years, my pain is gone, but for the last two years, that area itches. Last night the itching woke me up. Am wondering what comes after itching? Take heart, if you can, for eventually we heal, hopefully in this lifetime.<br /><br />XOXOXO,<br />BrendaBreastCancerSisterhood.comhttp://breastcancersisterhood.com/noreply@blogger.comtag:blogger.com,1999:blog-2008503505414285765.post-35257209997668585792011-12-04T23:32:04.005-08:002011-12-04T23:32:04.005-08:00Lisa,
Thanks for your kind words. It's diffic...Lisa,<br /><br />Thanks for your kind words. It's difficult for people with any illness to simply pick up the pieces and go on. Chronic illness, chronic pain, emotional upheaval....these are not what doctors always think about. They are there to treat, and not think about the aftermath of what they are doing.<br /><br />The first five years after diagnosis were physically and emotionally rough. After I started gaining a grasp on my life five years after, then I needed the surgery. That ensured lifelong pain and agony.<br /><br />I wish so much that some doctors would be more upfront about informed consent.Beth L. Gainerhttps://www.blogger.com/profile/08780737397716824019noreply@blogger.comtag:blogger.com,1999:blog-2008503505414285765.post-89548085110364880582011-12-04T23:27:21.963-08:002011-12-04T23:27:21.963-08:00Renn,
I appreciate your readership. Yes, I rememb...Renn,<br /><br />I appreciate your readership. Yes, I remember when I was in your situation, just wanting everything to be done already!<br /><br />You will get there, but as you already know, it's a long, arduous journey.<br /><br />I appreciate your support.Beth L. Gainerhttps://www.blogger.com/profile/08780737397716824019noreply@blogger.comtag:blogger.com,1999:blog-2008503505414285765.post-79084119094117157182011-12-04T23:25:26.499-08:002011-12-04T23:25:26.499-08:00Good points, Julie! It's so true that a doctor...Good points, Julie! It's so true that a doctor's view of success and a patient's view can be so different. I think too many doctors focus on the scientific or medical success, while disregarding those quality of life issues.<br /><br />I think my surgery was as successful as it could be. I guess what I'm really bitter about is not being told before the surgery that most likely I'd be in chronic pain. <br /><br />I'm sure many others who have had my surgery just quietly accept the pain and don't bring it up. <br /><br />But it is there, always there.<br /><br />Thank you for reading and commenting.Beth L. Gainerhttps://www.blogger.com/profile/08780737397716824019noreply@blogger.comtag:blogger.com,1999:blog-2008503505414285765.post-66922459710239548622011-12-04T23:19:43.612-08:002011-12-04T23:19:43.612-08:00Rachel,
Thanks for commenting. Yes, it was an ext...Rachel,<br /><br />Thanks for commenting. Yes, it was an extremely emotional post to write, and the very situation I'm in is an exceedingly emotional one. You are right: too many people want to believe the myth of the triumphant, happy breast cancer patient/survivor.Beth L. Gainerhttps://www.blogger.com/profile/08780737397716824019noreply@blogger.comtag:blogger.com,1999:blog-2008503505414285765.post-7518733537381462002011-12-04T09:18:35.838-08:002011-12-04T09:18:35.838-08:00Beth, what a wonderful post that I'm sure was ...Beth, what a wonderful post that I'm sure was difficult to write. Thank you for sharing...it makes me understand more of what you have been going through the last five years. Although my medical situation is different, I can relate to how medical professionals gloss over the post-surgical or post-treatment quality of life part. Thank you for your support, and you know you always have mine. HUGS.<br /><br />LisaLisa Shrossisnoreply@blogger.comtag:blogger.com,1999:blog-2008503505414285765.post-42525079642294235092011-12-02T15:50:02.300-08:002011-12-02T15:50:02.300-08:00Great post, Beth.
I'm sorry to hear that 5 y...Great post, Beth. <br /><br />I'm sorry to hear that 5 years later you are constantly reminded of recon and BC. <br /><br />I'm still less than one year from diagnosis and am SO wanting recon to be done! Some days I am more patient than others.<br /><br />Keep on writing,<br /><br />RennRennhttps://www.blogger.com/profile/08617626526633867494noreply@blogger.comtag:blogger.com,1999:blog-2008503505414285765.post-86723948605446743012011-12-02T09:17:00.019-08:002011-12-02T09:17:00.019-08:00Beth, thank you for writing about this, & sorr...Beth, thank you for writing about this, & sorry you're still having so much trouble. Unfortunately, docs usually focus on their successes, & minimize the possible downsides. I guess that understandable, but we really do need to know before hand. That your doc says it's all "normal" indicates they really could have done a better job of talking about realistic after effects!<br /><br />"Success" means so many different things. My definition of successful may be quite different than my doctor's! A heart surgeon may consider a procedure a success if the patient is still alive on the table when he leaves the room. But if the patient dies 3mins. later, will his family think the surgery is successful?<br /><br />That amount of pain certainly does not seem like a success to me.Julie Goodalehttps://www.blogger.com/profile/11409261967805631648noreply@blogger.comtag:blogger.com,1999:blog-2008503505414285765.post-14090666066577689892011-12-02T07:36:49.016-08:002011-12-02T07:36:49.016-08:00Thanks for sharing your truth Beth. This must hav...Thanks for sharing your truth Beth. This must have been very emotionally painful to write. Many people don't want to believe that the " happily ever after" scenario after cancer is in fact a myth for the majority.CancerCultureChronicleshttps://www.blogger.com/profile/07650364997423007994noreply@blogger.comtag:blogger.com,1999:blog-2008503505414285765.post-47352243323660087932011-12-01T09:39:45.685-08:002011-12-01T09:39:45.685-08:00Hi AnneMarie,
Thank you for your caring comment. ...Hi AnneMarie,<br /><br />Thank you for your caring comment. Wow, so we both had our surgeries only a couple of months apart!<br /><br />You are right about quality of life issues often being ignored. Too often, doctors can be so focused on a medical solution, they don't think of the aftermath of treatment.<br /><br />Yes, our society has grown too complacent about what survival really means. Survival means success, right? Well, it's not a complete success until the cure for breast cancer is found and no one ever has to endure this disease again.<br /><br />Thank you for sharing your mom's and sister's stories. I appreciate your candor.Beth L. Gainerhttps://www.blogger.com/profile/08780737397716824019noreply@blogger.comtag:blogger.com,1999:blog-2008503505414285765.post-79163318788680090212011-12-01T09:15:31.338-08:002011-12-01T09:15:31.338-08:00Dear Beth,
My own surgery was only slightly ahead ...Dear Beth,<br />My own surgery was only slightly ahead of yours (5 yrs in Sept). I did the "gummy bear" implants. My mom, after twenty years of a prosthetic, had her other cancerous breast removed in 2007 and has "normal" silicone implants now on both sides. My sister opted for a flap surgery. The scars are a reminder every single day. My sister, despite only having sentinel nodes removed which greatly reduces the risk, has lymphedema. <br /><br />I, too, am glad to be here to tell my story and to read yours. I too, know I am lucky when I see some of the others who have much more difficult prognosis. Also, I see the pain you are experiencing and again, I know I'm fortunate there, too. But it is all "Just For Now." We are all "at risk" and I only have to look to my own mom to be reminded of what could happen 20 years down the road, just like it did to her....<br /><br />I just hate that we've become so damn accepting of the fact that many can survive we are not making meaningful progress. <br /><br />I hope they find some sort of a solution for the compromised abdominal wall and I hope your pain will soon subside. QOL issues are often ignored and they are too important for us to keep turning a blind eye....<br /><br />Thanks for sharing,<br />AnneMarieAnneMariehttps://www.blogger.com/profile/17728571907921895836noreply@blogger.comtag:blogger.com,1999:blog-2008503505414285765.post-74920537382025939032011-12-01T09:12:42.037-08:002011-12-01T09:12:42.037-08:00Thank you, as always, Nancy for your supportive co...Thank you, as always, Nancy for your supportive comment. Yes, you always get it, too. I am sincerely grateful for everything, as I know I got the best treatments I could, but, well you know how it is. <br /><br />I'm sorry you lost your mom to cancer and then had to go through your own cancer. It's crappy. I am grateful for your support and for not being alone through this experience, journey, or whatever it is called.Beth L. Gainerhttps://www.blogger.com/profile/08780737397716824019noreply@blogger.comtag:blogger.com,1999:blog-2008503505414285765.post-36969903448256525072011-12-01T09:01:09.499-08:002011-12-01T09:01:09.499-08:00Oh Beth, There are those days forever seared into ...Oh Beth, There are those days forever seared into our minds aren't there? This is such a great post. I struggle with this gratitude thing all the time. I know I am supposed to be eternally grateful for my reconstructed breasts. I am but... (and it totally drives me crazy whenvever I hear that boob job comment) Beyond that, I know I should be grateful to just be alive. And I am, it's just... well you know. You always get it. I'm sorry you still have all those issues. I'm sorry you had to have cancer. But here we are, continuing to adjust day by day. At least we aren't alone!! And that, by the way, is one of the things I am most grateful for. Thanks for writing this.nancyspointhttp://www.nancyspoint.comnoreply@blogger.comtag:blogger.com,1999:blog-2008503505414285765.post-25749021491457971152011-12-01T09:00:26.629-08:002011-12-01T09:00:26.629-08:00Thanks for reading and commenting, Jody. I've ...Thanks for reading and commenting, Jody. I've already had an ultrasound and brought this problem up to the doctors, and they say that this is quite "normal" after a surgery as this one. <br /><br />I've been having a particularly rough week, and the pain isn't always excruciating, although it is always there. There's no repairing a compromised abdominal wall.<br /><br />I'm glad to be here telling my story, too. We all have our stories to tell.Beth L. Gainerhttps://www.blogger.com/profile/08780737397716824019noreply@blogger.com