Bilateral Mastectomy with Tissue Expanders and Radiation to Follow - Toronto, ON

Hello ladies, this is my question as well. I'm due for sure on July 8th for placement of expanders. However it'll be followed by radiation. Need answers. Not sure what today expect. Is there anyone that has had this same procedure?

I'm very sorry you ladies had to go through this ,but it sounds like you are all taking a positive approach and this is a huge part of your success. I, too, had a bilateral mastectomy with expanders as radiation following the procedure six years ago. I did have a few hiccups along the way...the expander and saline fillers created some backscatter ( I think that's what it was called) of the radiation so they radiology techs had to attach additional meters to monitor for overradiation and recalculate so that I would not get any more radiation than was necassary; also one of my fills, made the expander too big and it blocked the path of the laser and sort of cast a shadow over the area that needed radiating, so I had to have it deflated temporarily; and of course, the radiation causes a severe sunburn-like condition on the treated area as well as some hardening of the skin. The skin hardening may have been a personal problem however because I am prone to scarring easily. I wish you well and speedy recovery!

Hello, I had bilat mx 5/21/15 followed by chemo/rads then reconx 4/6 left lat flap with TE. With pt w/rads my PS likes to do combo flap w/implant after rads. I've had 6 fills and they're slowly taking shape but are lopsided. PS says all will be good though. I have a ways to go for my D cup. It's most painful first thing in the AM and after the fills.

No worries, it's pretty common really to have to have both. They had to readjust the machine setting at the beginning bc one was overshadowing/blocking the other, but once it's set, it's set, so then we were all good. I'm in later stages of natural breast reconstruction and radiated skin is darker. I'm olive skinned so had no issues with burning or any probs w radiation. During my recon, I just asked my surgeon to cut out the darker skin and use the other skin we were using. Easy breezy. It may be a long road, but you're already on your way. You will get there and I'm sure yours will come out great!

I was Stage 2 breast cancer. I had bilateral mastectomy with reconstruction in Feb 2016. Surgeon did the Sentinel Node procedure. They shoot a dye that illuminates the path that cancer would take to the into lymph nodes. The the surgeon only removed 5 nodes that were targeted. Pathology tested them & they came back negative. Some stinging numbness in left arm from the node harvesting but the arm exercises help a lot. My arm feels much better now.

I had breast cancer, I had the bi lateral w expanders which I regret now. My breasts are numb and ugly and it is a year and a half later. I still need more reconstruction. That said I decided against radiation and chemo. The breast recon doc said he was happy I was not getting it, but left it at that. I decided to go all holistic healing. Biggest reason for me was when I read the warning label on chemo and radiation, it says it causes cancer, why would I want kill a weed with a bazoka. Anyway, you may want to look into The Quest for the Cure by Ty Bollenger, so many have left the medical insanity of chemo and radiation suffering for total health that will not burn your insides. I personally take baking soda daily, look it up on YouTube and hemp oil, it is legal now for cancer, look up Rick Simpson/cancer on YouTube. But if you watch The Quest for the Cure, which every cancer paitent needs to see, all this is spoken about by many doctors who realized that chemo just does not work and that other methods cure cancer in a gentle way that does not spread it. I hope this helps. God bless you.

I had 14 nodes removed 5/21/15 and I'm not having any problems and I don't recall the surgeon telling me about long term side effects other than some numbness and temporary range of motion limitations. The discomfort I have now is intermittent like after a fill in my expanders. Here is some good info re lymph node removal:
http://www.breastcancer.org/treatment/surgery/lymph_node_removal/number_removed

Also I have chronicled my bc journey -bilat mx-chemo-rads- here if you want to ck it out:
https://mysterylover66.wordpress.com

Full lymph node removal sounds drastic and unless art. They usually remove the infected nodes plus a few extra.

I didn't know much about lymph nodes until l was told they had to remove some during my mastectomy. Going by a diagram I was assuming maybe a dozen or so, but on my daughter asking dr. Months later about how many l had removed, they said 25 cancer had spread to and 33 removed. I have been fit and well Since 2010 and have full movement do both my arms although l continue to exercise them. So try not to overthink and stay positive. Blessings to you.

I think the standard for radiation is two or more positive nodes. I think they also take family history into account. I had 2 of 10 nodes that were positive. My radiation oncologist recommended radiation. I'm glad I did it. I saw it as a double whammy on the cancer.

Hello, I don't think you look flat. I just admire you for being so brave! I think the perception is different as you don't have nipples so it might make you feel more flat. I don't know if your doctors planning any thing for your nipples but if not then one think I could think of is to have your nipples tattooed and that should work the trick. Take care xx

Remember the expanders are not how the final implants will look. I had bmx followed by chemo/rads then 6 mos later had left Lat flap with bilat tissue expanders. Just had exchange surgery 6 weeks ago and am very pleased. I have a spot of extra skin on the right that left a notch on the bottom but he is watching it and if it doesn't "settle" he will do a minor adjustment. You can't tell in clothing though.

I hate to discourage you but there are certain facts that I suspect you have not been told, or perhaps have not yet assimilated , understood, expected or personalized. Implants are NOT breasts. They are facsimiles of real breasts only. It's not a boob job that you are getting... IT'S A SALVAGE JOB. Forget what Hollywood and the media has tried to convince you of. Forget what your friends try to convince you of. Forgot about what you looked like before the surgery. Forget about the women that say their breasts are beautiful now ( perhaps their's were hanging at their waists pre surgically and anything is better than what they had). Forget about your expectations as they are probably unrealistic, as I've been told mine are. I just wanted back what I went in with, nothing more and nothing less. The honest truth is that you will get what you get and they can only be "faked" so much. They are bra fillers and that's it. The surgeons are trying to make the best out of a bad situation. They will tell you that at least you have your life and that that is the most important. Your friends and family will tell you the same. They will tell you it doesn't matter what you look like, but I know it does. You see yourself everyday. You know what you were and what you like. Personally I think your left breast looks more normal, but you may prefer the look of your right side. Everyone including the psychologists will tell you that you are more than just breasts. I agree, but it is not the same and they don't understand that part. Losing your real breasts is a HUGE LOSS and I'm sure you never imagined what it would be like. I certainly did not. Reconstruction is not an easy road. Reconstructions are NOT breast augmentations with implants, which often look very good, because there is natural breast tissue over them. In our case, there is only skin, probably thinned or perhaps a membranous material such as alloderm covering them. BREAST AUGMENTATION , which is NOT what you or I have had done, is the surgical placement of breast implants to increase fullness and projection of REAL breasts or to improve symmetry of REAL breasts. RECONSTRUCTION with implants will give you MOUNDS that get ripples, wrinkles, and hollow spots at their own whim,

and will move like a marbles on your chest, between your skin and your chest muscle wall. They should NOT be called breasts because they are NOT BREASTS in any way, shape or form. Try to imagine a stone in your shoe, moving independent of your foot and your sock and not really fitting anywhere. Think of having a pool noodle strapped onto your chest... that's what they feel like. Gummy bear implants are HARD, and very firm to palpation. They are cold to the touch and are not warmed by your chest wall. They assume the ambient temperature of the room. You will have no position sense of where they are. You will bump into high counters with them because your brain gets no proprioceptive information from them. There is no female fat to cover them and make them feel soft, warm or flexible. They don't fall or have ptosis like normal breasts. They are different on top, either like a grapefruit( your right side) or the upper part of a pear (your left side), neither of which shape fits normal bras or bathing suits. The midline breast borders are either non-existent or at the most, not normal in appearance or location. They are either over differentiated or have no differentiation or as in your case have one of each style. If they are squeezed towards the midline to "create" cleavage, they change shape unnaturally, moving vertically as well as laterally, but both differently. They are rarely symmetrical. The lower mammary fold where the breast mound meets the chest wall may or may not be the same on each side. The implant may change position vertically or laterally and develop a bloop near the lower border which will look like your breast has grown a blob. Real breasts don't do that. Hopefully the implants do not fall back towards your arm pits and feel like lumps there that you have to reposition during the day. If you choose the round ones vs the anatomical ones, you will clearly see the superior and lateral borders of them... like grapefruits stuck on your chest. Those will most certainly look really fake. Textured gummy bear implants can also have folds and ripples so don't think you are out of the woods with that complication by choosing those. Your blood vessel damage and skin damage on the left may necessitate a smaller implant to decrease the risk of necrosis. Perhaps your skin is thinner???? Perhaps the aggressiveness of surgery on the left was greater as well??? Breast RECONSTRUCTION, which is what you are having, is achieved through several plastic surgery techniques that ATTEMPT to restore what you have left ( namely a skin pouch) to near normal??? shape, appearance and size of a breast, following mastectomy. Although breast reconstruction can rebuild something that looks like a breast, the results are highly variable.

I had my bilateral mastectomy and implant reconstruction in February 2016. I'm a dental surgeon for 35 years and my sister is a physician for 32 years. I thought I had researched till I could no more, and quite honestly I was not prepared for what I received. My plastic surgeon, in Calgary, ( who only does breast reconstructions, following cancer diagnoses) is the top in Western Canada. I was given a lot of information which I believed was adequate to prepare me. Perhaps I even received more than the average non-medical person would have received. I know I asked many many questions along the way. The reality is that the information I received was not detailed enough nor, in retrospect, was I adequately prepared. I actually thought and expected that I would receive reconstructed breasts that looked like I did before , and felt like real breasts ( aside from numbness which I expected). I was told that revisions should be expected, but what exactly what can be done to improve them, I will not know till February 2017 on a return post-op visit. The critical questions to be answered at that appointment will be how much will extra surgeries really improve the result, when weighed against the risks of infection, necrosis and further disappointment? My approach now is simply to not look at them. I was promised and told to prepare for 3 things with the mastectomies-

scars ( which are not an issue for me and have faded remarkably already), permanent numbness ( which was better than the irritated skin feeling I have now) and the very real possibility of the nipples turning black and falling off . The nipples remain intact. I was not promised and did not expect what my realities are as noted above. The more patients I talk to, I realize that we really didn't get enough REALITY talk.... we got what was thought we could tolerate at the time.

I fully understand your panicking... it too is a roller coaster for me, that really messes me up emotionally, just when I think I am getting over things. It is worse when I am not sleeping, working very hard and long hours and when I project into the future with my life. I was told that no revisions would be done for a year, to give time to see what I would morph into. I have not really changed physically in appearance since month 4 post surgically. As requested, I send the surgeons photos of myself every two months as I do not live in Alberta. I honestly believe that part of the "waiting for a year" relates as much to emotional and mental settling as it does to physical healing. For me, I did not like them at 4 months and do not like them any more at 10 months. It has been a disappointing experience, despite the surgeons doing what I believe is the best they could. Perhaps when they are replaced in 8 - 10 years ( which I hope you've been told is recommended), technology will have improved.

Lower your esthetic expectations if you can, to set yourself up realistically. Mine were much too high I guess, but I'm a detail person in a career that demands details.

All the best... I'll look for your progress reports.

Kim, just a note of encouragement. Just take one day at a time. I had bmx with implant recon in 2014-2015. Just got my 3d tattoos one month ago. I had smooth round silicone (not gummy bears), and no rads. Overall, I am 80% satisfied. My left is slightly lower, and they do have some differences...but my real breasts also had asymmetry. It took me at least 15 months after exchange to feel comfortable with them. It takes much time to adjust. I look great with a bra and clothes...and decent naked. There are many examples of reconstruction results on Vinnie Meyers.
Com. You are only 2 weeks into this, so just try to not panic. It is a very long road, but try to pace yourself for the marathon and not the sprint. The expanders change as they fill, and the implants take time to settle. Glad that I had reconstruction rather than not. In clothes, bras, swimwear...no one would ever know the difference.

I don't think you look flat either. I had a unilateral mastectomy and a slight augmentation in the other breast to match in 2013 and now I have a new set of boobs -- one with a reconstructed nipple and tattoo and a scar that is still fading but it has character LOL. You appear to have a nice shape (maybe not what you had before but it is a new start). Go for a nipple reconstruction and nipple tattoo -- it does make you feel more "whole" and put back together so you can go do more things than visit doctors. Keep the faith. :-)