TE/Implant OVER pectoral Can exercise, comfortable &NO RIPPLES!
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thanks raven, it does help to know we can all empathize with each other. If you are really in MI I will wave and say hi as I drive to WI from the east! We are going for orientation right before my surgery.
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2FUN, I really am in MI! I'll wave back!
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Hello, Av! Good to see you around! Wow, im so glad your expanders dont bother you. For some reason I thought you did 1 step. Chemo brain! Yes, i am doing ok as far as my PS and ID doc can tell. My comment about paying- my insurance pays 80% after my deductable is met. As someone still at the beginning of my work life, even paying 20% of all these surgeries is an astronomical sum. I wish I lived in Canada! The American system is the absolute pits. Many people are bankrupt from medical costs even if they have insurance. We def need socialized medicine! Hope you are well- keep us posted if you decide on another surgery!
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Hey little blue. I'm so glad that things are progressing well. My expanders are ok, but if I knew that this was as good as it gets, comfortwise, I would have them out and go flat.
No medical system is perfect, or even close. Dealing with a life threatening illness like cancer, I can barely imagine how I would have coped with insurance and financial issues. I had enough financial stress from being off work. I remember during chemo that about a month in, people started posting about problems with insurance claims, etc. It seemed ridiculous to me to add that stress on top of chemo and surgical side effects and complications. I had pretty rough side effects, and my first surgery did end up with infection that required IV antibiotics, and dose dense AC-T laid me out for months. There are no personal charges for anything in the hospital, including surgery, chemotherapy and reconstruction (except parking in city hospitals!) and although you have to personally purchase drug coverage, it isn't expensive, and the maximum charge for any drug on the covered list is $25. Not everything is covered, but medically indicated cancer drugs are, and that includes Neulasta if your MO prescribes it as part of curative intent treatment. That said, it is true that up here, if you have a medical problem that is not life threatening, you will wait longer for treatment, sometimes a lot longer. Where I live, cataract surgery, hip and knee replacements and the like are a long term project, and the wait can be many, many months, with impaired QOL. My DH needs cataract surgery, and to do it on the government plan means a wait of about a year. It isn't a huge problem if your eye doc is monitoring you, so can plan in advance, but it is a good long time.
Even if you don't live in Canada, please do let me know if your travels should ever bring you up to this neighbourhood. I'm close to the Royal Tyrrell Museum of Palaeontology, and it's a pretty neat place, in a stark but beautiful setting.
Be well
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2FUN, why is your throid coming out? If you mentioned it before, I somehow missed it.
Littleblueflowers, that is great your implant situation is doing really well. I am glad you are on the mend. I will keep my fingers crossed for you, and all us, that we heal and stay well.
Raven4mi, I had to laugh over the "humility " of your PS. Didn't you know, it IS really all about your PS? Give me a break. Did you keep a straight face when he said that? I probably would have laughed.
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When my endometrial cancer was discovered, my surgeon ordered full body CT scans, so if there were suspicious nodes or metastatic disease he could go after it. I was greatful the cancer was caught early, but they.found suspicious looking lumps and bumps all over...lungs, kidneys, thyroid. I then had more testing to look at all of those areas. Biopsy of thyroid showed a cell type that is not normal, and can only be determined to be malignant or benign in situ after removal, so out it comes. I had the right side of my thyrlid.removed for the same cell type 15 yrs ago, so now the left side goes. MO got me into a lovely endocrinologist yesterday. She gave me the plan if it is malignant. Another very skilled doctor, and a real person. We talked about our families etc, and it was a "squeezed in " appt on a Friday afternoon. the endocrinologist believes there is a genetc connection between BC and thyroid, as well as thyroid and melanoma, and BC and endometrial CA, but they just haven't found the genes yet. My friend works for Myriad, one of the genetic testing companies. I'm thinking of contacting them to see if they want to use me for research.
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Raven4mi can I ask who your PS is? I live in Shelby Twp and am having my Dmx and pre pec implants at the same time in a few weeks. I have an appt with my PS on Tuesday. Is there anything out of the ordinary that you recommend I ask?
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Legomaster225, my PS is Bruce Chau. His offices are in Berkley, MI and he works out of Beaumont and Huron Valley Hospitals. He does not do direct-to-implant so I can't help you with questions about that but, in general, ask about sizing and they brand/type of implant you'll be getting. If you read through a few pages of this thread you'll get lots of good tips on things to know and ask about!
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Hi all. Nice to see this thread as I had over the pectoral TEs a little over 2 weeks ago with my BMX. It was a pleasant surprise to find out after the fact that my PS had done it that way. I woke up from surgery almost inflated to my normal size of 34 D. After first fill, I was full size again. So, I am thrilled to not have to go through all the pain of expansion that I have heard friends went through with their TEs under the muscle. I asked my PS why he did mine just under the skin and he said, "Because I can! I know how."
I look forward to reading about your experiences.
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Wow, the list is up to 34 PS across the US who are able to do Prepectoral (over the Pectoral Muscle) Reconstruction.
Thanks Ready2bedone for your PS name which I have added to the list.
Thanks, and welcome to Avmom, for the explanation of medical services in Canada. Sounds like the capping of out of pocket costs is one of the chief benefits of the Canadian Medical system. I have been pretty impoverished by all the many medical visits and surgeries, because so much was not covered.
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I am having a skin and nipple sparing prophylactic double mastectomy. I had radiation to one breast ten years ago.
Is it better to have TE for the radiated side or go straight to implants? TIA
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Hi Goldfish. I don't know, it depends on several factors. Is your skin in good condition, where you were irradiated? Do you want to stay similar in cup size, after reconstruction? You loose some degree of skin with a masectomy, with a good surgeon, should be a small amount, but that does affect how big of an implant can be put under the skin.
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Goldfish, my PS does not do direct to implant and especially would not do them on a breast that had radiation because of potential complications to the compromised skin. He's not a fan of radiation wrt to reconstruction, let's just put it that way - whenever he sees a complication it's always on a radiated breast. But that's just his opinion/experience - lots of PSs do things differently.
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Goldfish, can you comment on how your radiated skin is healthwise?Is it as flexible and supple as the adjacent nonradiated skin, or is it stiff and a bit woody? Does it have any petechiae, you know, the tiny little broken blood vessels? If your skin is in need of a bit of TLC, what about Fat Grafting to improve blood flow? I know it isn't direct to implant, but it can be a big help for skin that is damaged even microvascularly by rads.
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raven4mi & macb04, thank you for responding. I was radiated 9 years ago, and my ski is in great shape. Looking at me you wouldn't know that I've been radiated other than that breast being smaller. My ps plans on doing direct to implant on both breasts, however, she warned me that it all depends on what the radiated skin looks like on the inside.
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Hi gals, just an update on my progress. Had lumpectomy and radiation in 2014. Had recurrence in 2017. Had skin and nipple sparing BMX on May 17 with direct gummy bear implants placed over the muscle. I am now just over 4 weeks out. No complication so far. I have nearly full feeling in the skin in both breasts. The nipples are numb but have some feeling.... the nipple on the radiated side has slightly less erectile function and sometimes turns a little pale, but she is hanging in there. I have very little pain, and full movement of both arms. My wounds have healed perfectly. So many scary stories of reconstruction after radiation. Just wanted to post something positive.
I know I am still early out, but so far so good!!0 -
Sunrisefish, that's so awesome. I'm almost four months out myself from this surgery and it pretty much feels like nothing even happened to me. I have most of my feeling back as well, and strangely I feel even stronger and more flexible than I did before the surgery. I think preserving the muscle makes a difference, and because I feel so good, I've been motivated to get in the best shape of my life.
As a bonus, I look better than I have in years, with and without clothing. The scars have faded considerably, and my breasts finally match after years of procedures and lumpectomies. I really wish I had elected BMX from the get go and spared some prior surgeries and the constant enervating surveillance that docs seem to push these days with early stage diagnosis. There are indeed some positive outcomes from the right kind of BMX,if you are early stage enough to qualify for it, and it's good for people to know that.
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candles1, thank you so much for your post. You are an inspiration and we need more positive stories!! Unfortunately, many women with positive outcomes stop posting and move on with their lives. People need to realize there are many, many positive outcomes, procedures and treatments. Theses positive stories are probably not equally represented in the forums. Every one of us knows bad things happen .... this is a cancer site after all! But I think it is important to keep things in perspective and celebrate the victories, to focus on the positive and be grateful. Even cancer has a silver lining if you look for it. The gifts that lie in the dark cannot be found in the light...
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Sunrisefish & candles1
Thank you both for sharing your experiences. It is so encouraging to hear about successful BMX after radiation. Continued healing and good health.
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Welcome Candles1 and Sunrisefish. It is good that you posted such positive outcomes. You are right, often there are not many of the good reconstruction stories, especially for those who have had rads and have been told Implants won't work.
To be truthful, I am still pretty angry, so I find nothing to be grateful for in the whole horrific mess, except you lovely, kind and supportive women. The reason I started this thread, is so that benefit could come from my troubles for other women, help them shorten their struggles and possibly have the best outcomes from Prepectoral Implant Reconstruction. With each response on this thread I feel glad to be achieving that.
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macb04, you are such a tremendous inspiration. Your experience and this thread are invaluable to many including myself. Before my surgery, I read this thread and it helped me make the decision to have implants over the muscle. You gave me much needed courage. I knew there were risks. I know there still are. None of us are guaranteed good results. None of us are guaranteed that the cancer will not come back. There are no guarantees in life for anyone. We just do our best with what we know. Our surgeons are doing their best too. In the end the only thing we can control is our attitude. I still know I may lose my breasts.... but they are breasts... not an arm, not a leg, not my son, or my daughter. I can't help but think about our sisters in the Stage 4 forum. I have not visited that forum , but I am profoundly aware that I could be there one day. Any of us could be. For now, cancer has taught me perspective ... It has.. and for this I am thankful. I don't mean to belittle anyone voicing their pain or procedure or outcome. I have been diagnosed twice in 3 years, trust me I get it. I know the fear and pain. This forum is so valuable in helping us get that pain out, navigating the hard decisions, and knowing we are not alone. Thank you for starting the post and continuing to be a source of information and support. To all of my sisters... wishing you health and healing in mind, body and spirit.
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Sunrisefosh, that is so well put! I agree wholeheartedly!
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Thanks 2Fun. You made me feel better, to know all the stupid suffering I went through wasn't for nothing. Knowing that I could help you and other women on this board to make educated decisions about such acrucial topic as reconstruction picks me up when I get bummed out.
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I agree, Sunrisefish. Macb,you've been such a help to me through all the problems I've had, seeking alternative treatments and just having the pluck to say "No!" I'm not doing that. Don't ever forget how much you've helped others on these boards.
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Thanks to you too raven. I do get discouraged at times. Definitely makes me feel better that you have benefited from the info I put out there. I feel we have to improve this situation for women, this is so hard, we should be able to safely achieve whatever comfort and "beauty" we can get with reconstruction. We all deserve that much at the very least.
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Just thought I'd pop in with an update.
I finally had my first appointment with my PT today for the lymphedema (after a bit of a scheduling snafu) and I'm so excited to finally be getting some help! The PT I met today is actually just filling in for the regular LE specialist (the sub is also an LE specialist) and won't be my "regular" PT but was able to do the evaluation, take the initial measurements, and start on a little massage today. She also said that it will be up to the regular PT whether or not they want me to order any specialty camisoles/binders/etc. so for now she has just taped the breast - it looks like a really big pastie. LOL! My husband will get a kick out of it. Lastly she said that this redness is very typical and she's seen much worse cases by a long shot! I realize that every case is different but I forgot to ask her approximately when to expect to see results. I have another session tomorrow so I'll be sure to jot down my questions.
I'm just so very grateful to my MO for recognizing this for what it is and for making the recommendation. I'm feeling very lucky right now. I've also done a bit of research on essential oils to help with LE so will be ordering a couple more tonight.
I'm just so very hopeful that this will be the answer and I haven't felt hopeful for a very long time, so it's a nice change. Praying this reconstruction nightmare will be over by the fall so that I can enjoy a winter vacation to Europe without having to worry about anything.
Hope everyone else is doing well!
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That is good news Raven4MI. Hopefully you are finally on the road to full recovery and I truly hope they can help you quickly.
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Hi Raven4mi, that is just so cool, that you can finally see the light on the horizon. I am so happy for you. LE is a nasty mess associated with bc treatment, and so relatively little has been researched about it. It affects so very many of us, and insurers don't like to pay for the skilled care needed to evaluate and treat LE problems without a big run around. My insurance only payed part of the costs, wound up with a big bill because of the high deductible. Raven I hope your care is well covered.
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Thanks, Legomaster and macb. Macb, I am lucky to have pretty good insurance. I do have a 20% co-pay, but I'm very close to reaching my annual out of pocket limit anyhow, so I don't think it will cost too much. Regardless, I would gladly pay just to get this all behind me. It covers unlimited sessions as well.
Had my second session of massage today and won't go back again until next Thursday but only because we'll be out of town for the holiday. She kept the tape on but because I have to see the ID for follow-up tomorrow and the PS for a fill on Thursday she instructed me to take it off in the shower tomorrow morning. The tape "pastie" is kind of large and covers most of the breast but on the areas that I can see it appears the redness is already resolving! She said it will likely be 2-3 weeks before I see a significant improvement in the swelling. Hell, I'll take that! Came home with self-massage and stretching exercises to do twice per day. Reminders are going on my Google calendar so that I remember to do them!
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Hi All! just catching up my wedding...I think we had two days to ourselves in 2 weeks due to so many friends and family in town. Now I'm back at work 4 hours away from my spouse.
I feel awful reading the post about finances and the cost of treatment/surgery etc. Littleblueflowers is right in that even with good insurance the costs suck....people can still become bankrupt. I am VERY worried about the terrible health care bill being proposed. I have fantastic insurance (no deductible, no cost shares), but if my carrier will be able to change my coverage and costs due to pre-existing conditions (CANCER), I'd be screwed. It's sad that I don't retire from USPHS this summer to be with my spouse (who lives in another state) because I need to keep this insurance as long as I can (assuming it doesn't change in the near future) Have to be smart about that!
Also I think a lot along the lines of what sunrisefish posted on the 16th. Attitude. I continue to do the best I can and keep moving forward. Fingers crossed I don't get breast cancer again, or any others cancers later that were caused by chemo/rads. Happy to have this life, happy to have someone who supports me through everything, happy to be able to run and hike and bike and play (though some ortho woes hold me back a little, not cancer). I know I'm incredibly fortunate.
You are all amazing and strong and I am so thankful to have you out there, yet right here!
- xo
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