Prophylactic Bi-lateral Mastectomy 7 Years Ago - O Fallon, IL

I had had numerous lumpectomies in prior yrs and...

I had had numerous lumpectomies in prior yrs and 13 in that year alone, finally electing to be proactive, I chose the procedure of a bi-lateral mastectomy to reduced my already high risk of cancer and the number of times I was having to go in for lumpectomies.

My lumps were solid non-malignant tumors thus far but who knew when/if that would change. They were never able to aspirate them and given that I was at high risk, the surgeon said the only way to be sure was to remove the lumps.

My risks were having started periods before age 12, never having had children, having had several prior tumors (malignant or not), prior smoker, over weight, strong family history of breast and/or ovarian cancers, and those are just the ones that I can remember having had.

After several consultations with each, my surgeons worked closely together to coordinate everything which I greatly appreciated. I felt I had done a great deal of research before hand and knew what I was getting into. Today I feel like I could have done more including getting a second opinion on the reconstructive options and potential results.

The surgeries were relatively easy and exactly as I'd been told they would be. I came home with drains after a 3 day hospital stay (to ensure control of medications, with my significant allergies) and was quickly on the mend. They inserted expanders with 100 ccs each, to reduce total number of surgeries needed. I'm glad they did.

I think it was nearly a month before PS felt comfortable with starting the process of the expansion, wanting to allow time for swelling to go down first. The expansion process was not painful at all as I had very minimal feeling. He did the expansion fills in his office weekly to bi-weekly depending on the tightness of the skin. He would insert a needle which I barely if at all felt and inject saline, usually 100 ccs. Being impatient, I didn't feel that process was going fast enough, however I'm also sure that it minimized the pain and tightness others mention.

I believe the initial surgery was in December and the implants inserted to replace the expanders was in April of the following year. The PS did a nipple reconstruction at the time of expansion replacement, using tissue from my groin area.

Initially the nipples looked fabulous, he suggested I wait on tattooing to give time for healing. It never did take place. as I went back and forth in decision to do it, fearing the potential pain and liking the fact that they didn't show through clothing. I later decided to do so, but his office never calls me back with the information on where to have it done (which is a little frustrating). Over time the protrusion he initially created for the nipple, has flattened out to where it's barely there and the skin has faded so much that you can hardly tell I have any nipples.

Strangely, I loved the way my chest looked with the expanders, shape and size wise as we were nearing completion, they had an amazing fullness to their shape. My PS actually started saying that I might be getting them to full for my body size. While I disagreed, I started noticing that where in the past the fills increased the projection, suddenly that was no longer happening, instead they were becoming rounder in diameter only, which I didn't care for, so I agreed to stop the fills and move on in the process.

I explained to the PS that I didn't like that one sat higher than the other and seemed to be larger, or the fact that they seemed to sit so far apart, which he explained he could remedy with the changeover.

Those issues still seem to be the case. I came out of surgery with my entire chest very bruised and I think I recall him telling me something about he'd tried to address my concerns but that my breast cavities can't be changed. ?? I sort of get it but it would seem like there were other ways to achieve the desired look. Then as then almost immediately after the removal of the bandaging, I noticed that there was a dip in the top of my left breast, which he said would make it look more natural. I didn't like that response, as I'd never had dips in my real breasts and didn't have one in the right one, so why should I need to have one in the left? I began to feel like I was being ungrateful after all that had been done, so I walked away unhappy.

I was a little surprised because every time anyone in the medical industry saw them, they commented on what a great job he'd done, that it was the best they'd ever seen. Over time, it made me feel that maybe my expectations had just been unreasonable.

I am now 7 years post op and had recently heard that the implants would need to be changed out, that they weren't a life long material and that my body would eat away at them until they'd need replacing. In addition, I have gained an additional 25 pounds or so, as a result of no longer smoking and the many medications I'm on, having fibromyalgia, and not being able to exercise with any intensity. I also have a great deal of issues with swelling which make weight loss efforts virtually impossible. So with the fact that they appear almost flat when clothed now and the statement that they'd need to be replaced at some point, I started researching the truth to such a statement (initially finding it correct with replacement being 7-10 years in). So given that I was at 7 years and not happy with the size, I started researching my options at this point and came upon this web site.

I have now learned that there is no expiration on the implants and that they could in fact last for many years to come. In addition, I've learned that there are options out there that can address the things I don't like.

I was and am still impressed with the laws pertaining to mastectomies and reconstruction, such as if an insurance company covers the mastectomy, they MUST then cover the cost of reconstruction. Who would have known? I will continue to look further into what I'd like to do in order to address the issues I'm unhappy about, but overall, I don't regret for one day the decision I made 7 years ago in the removal or the reconstruction process either one.

There is a peace of mind in knowing my chances for breast cancer have been reduced to less than 2% now. There are occasions I've encountered since where having the reconstruction made things much less awkward for me as a woman, such as at the YMCA where children share the locker room, or when my grandchild came storming in while I was changing cloths as kids occasionally will do. For adults, I really don't care what they think but in the case of a child, shouldn't their parents have the ability to choose the time and place where they discuss such things verses having to because they happened upon the situation by accident? Not to mention the convenience it provides me of not having to deal with bra inserts and such. Heck, often times I don't even wear a bra and when I do it's strictly for coverage under sheerer items or trying to make them appear larger since the weight gain, not for support.

Cost is what was billed to insurance carrier, my...

Cost is what was billed to insurance carrier, my cost was nothing, thank God ;) and looking at photos, strangely it almost seems like doctor went for a prior to surgery appearance instead of for what my optimal desires were.

Belleville Plastic Surgeon

I think I answered some of this above. I probably should have gotten a second and/or third opinion but I loved my PS's compassion and at the time felt like I'd done pretty extensive research on my options. Now I feel like I might have been a little too anxious and that I should have researched my options further and not really settled for the answers I was given. Maybe there was a way I could have achieved what I desired without seeming ungrateful, who knows?

4 out of 5 stars Overall rating
5 out of 5 stars Doctor's bedside manner
3 out of 5 stars Answered my questions
3 out of 5 stars After care follow-up
3 out of 5 stars Time spent with me
2 out of 5 stars Phone or email responsiveness
3 out of 5 stars Staff professionalism & courtesy
3 out of 5 stars Payment process
5 out of 5 stars Wait times
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Comments (7)

Thank you so much for sharing.

My story starts out very similar to yours. Years of removal of breast masses. Last October I under went bilateral subcutaneous mascetomy with immediate reconstruction and saline implants.

I sit here today with a severe case of a capsular contracture on the left breast. I recently found out that the implants are on top of the muscle. One doctor want to perform a DEIP Flap. Another wants to remove both implant take care of the capsular contracture and leave me with no breast for several months to allow my body to heal. Neither doctor agrees with what the other recommends. One says the DEIP Flap is aggressive for someone who was never diagnosed with breast cancer. The other doctor says that if I take my implants out my I would experience a deflat in my breast envelope which could eliminate my chances of ever having the implants replaced.
I am in a lot of pain on a daily basis in both breast.
I have an appointment to see a 3rd PS next week.
I need to do something but I just don't know what is the right thing to do. I don't want to have to keep visiting this issue. I don't want to go without breast!

Any suggestions or thoughts?
I am 51 years old, confused and in pain.
  • Reply
Thank you Darlene, it was actually reading your story that caused me to realize that there may be other options to address the things I don't like, LoL so I will definitely continue to research and then weigh the options of surgery now or later and what I'd like the results to be in the end. Good luck to you as well, let us know how things are progressing and once you have your Dream fullfilled ;) T
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You sound like me with my first surgeon, I then decided I was not going to settle for less than as perfect as possible and that is when I was referred to Dr. Pinksky in south Florida. He has made me so happy and has given me everything my first surgeon said was not possible: cleavage, fullness on top, smoothness on both breasts with no indentation. I love you Dr. Pinsky. Never give up, never settle for less, keep pushing, get another opinion. If u have a friend who has had any type of cosmetic surgery as that surgeon who he would recommend for your reconstruction. Good Luck and keep me posted. Darlene
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LoL, nope I haven't had hip, knee, or heart surgeries and I'm very thankful for that :)

I will repost once I decide what to do if anything.

Thank you again,
T
  • Reply
LoL Why thank you Megan, LoL I didn't even mention that I had back surgery within 4 months of having them implants put in and debated only briefly on which to do first, until discovering yet another lump which ultimately made the decision for me. Wow you're right, a total roller coaster. It was better for quite some time health wise although I've had to go ahead and have a hysterectomy this year as well. I think that all of the surgeries, the fibromyalgia, and quitting smoking have taken their toll on my weight and self esteem, however that being said, I would still opt for reconstruction and am considering a revision to possibly help with the esteem issues. I would like to get my weight back down to a healthy weight, I'm just not sure how doable it is with the many flares I have with the fibromyalgia and swelling which makes weight loss completely impossible. So right now I'm just trying to decide if having the revision now would be giving in and deciding that I'm stuck at this weight but trying to make the best of it, or if I should give it a best effort to lose one more time and use the revision as a reward if I succeed. Lots to consider still I guess, LoL. This site has been so helpful though, I wish I had known about it prior to surgeries ;)
  • Reply

What?! Wow, it sounds like you have had just about every surgery there is! You certainly seem to be maintaining a good attitude about it given all you have gone through.

Weight loss seems to be a never ending battle for us ladies. My mom said that losing weight was her silver lining for going through chemo - gotta look for the positives no matter how hard they might be to find sometimes! Please keep us updated on how you are doing & what you choose to do with your surgeries.

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Wow, you have certainly been through a lot. 13 lupectomies in one year...I can't even imagine what that must have been like. I'm glad to hear how much your decision has reduced your chances of cancer.

The fact that you were concerned about a child and their understanding of the situation shows that you have a very compassionate heart.  I'm glad you have joined the community! :)

 

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