Topic: Anyone decide not to have reconstruction

Thanks Fidelia!  You are right...34 is so very young to have to make this choice.  Part of me is afraid that I will end up regretting not having the reconstruction.  For one, i have 3 kids ages 3,5, and 8.  THe older two swim competetively in the summer and i am constantly in the water with them.  No reconstruction poses issues with this, as I am a small person and cannot wear womens sizes.  I have to wear juniors bathing suits which tend to be much more revealing.  So it would be annoying and somewhat problemztic. 

On a more personal note, intimacy wise....well it's got to be hard I imagine.  I was already self concious before cancer, now it might be worse.  You said your husband had more issues than you did with this.  How did he handle it? That's a BIG concern for me since I am so young.  If I was in my 50's, my attitude would most definately be the same as yours...but I'm not.  It's so hard to know how you are going to feel until it happens.  My husband, is of course, very supportive in that he says he wants me to do what I am most comfortable with.  Yet, I'm sure it will affect him more than he lets on.

On the other hand, having reconstruction at 34 would also require that I have the implants replaced SEVERAL times in my lifetime since I am young and they only last 10 to 15 years.  This is not that appealing to me, but then again neither was a mastectomy, but I didn't have a choice on that one. 

Any more thoughts? 

I am 43 and was diagnosed in June of this year.  I have had both breasts removed and did not consider reconstruction at all.  This is me.  And it was more important for me to have several years of staying cancer free before I put my body through anything else. 

I am not married so I don't have a husband to think about, but the truth is....this is your body and your cancer and whatever you choose to do should be what you feel is best for you.  You are the one who has to wear them the rest of your life.  It is your body.  Do what is best for you.  What makes you feel good about yourself...because in the end that is what is truly important.  Do some research on the type you would have to get.  How many more scars will you have to get to get the tissue for them?  Do you want a nipple?  Where will they get tissue.  There are so many things to consider.

I pray for peace in your decision.

Hi,

I DID decide on reconstruction, I'm in it right now.  It has been rough, but for me I think I always would have thought I should have tried...  I have had radiation, so ultiimately it may not work, and I'm at peace with that, again, as long as I know I gave it a go.  You really have to think about what is best for you.

For varying opinions, go both on the Exchange City thread and the Alternatives to Reconstructiion thread  - you'll probably get a sense of what you gravitate to...

Best of luck, dear sister,

Geena

I lived almost ten years without reconstruction. I was diagnosed two weeks after I turned 37 years old (and also six weeks pregnant at the time)

I felt strongly about not reconstructing. I didn't do anything "bad" that required hiding. So I spent nine and a half years being flat chested, and ok with it. I wore no prosthesis. I was very casual about the whole process and I have two daughters. Teaching them that not having breasts is just the way it was because of my cancer. In that process they learned true acceptance and not put a lot of importance on the breast....even though society dictates otherwise. I have considered myself the poster child for flat chest rights and have no regrets. 

So why did I have flap reconstruction seven weeks ago? Because it felt right. I didn't have to deal with implants (I didn't want anything foreign in my body) It had not crossed my mind to even consider reconstruction even as recently as a year ago. I felt strong and empowered to live my life freely, and natural. I have no regrets. I think it was absolutely the right thing to do. 

And now, at age 46, I've made a decision that works for me in this stage of my life. I can't explain it other than to say that I was doing some reading, God led me to the NOLA site, and as I learned about the option, I felt like it was something I wanted to do.

Decide what's best for you...and don't let society define that for you. You'll never regret something that felt right for YOU, not something "expected" or "demanded" of you.

Carolynn :)

I am 64 and have had 3 recontruction with tissue expanders. The last one the implant partially migrated to above the muscle. I was in a job situation that I couldn't take time off. By the time I got approval and the original surgeon did the redo, he concluded that there was late affect from radiaton to that breast. I now know about concavity, where your implant puts pressure on your rib cage and ,for me, that meant pulling by shoulder forward and the spots for the radiation, I just found out yesterday, are out of alignment. It has affected my breathing at night. I often wake up with rapid respireatons altho it resolves quickly it has become fixed in mind that this is getting progressively worse. So I am trying a free flap procedure to use only my own tissue from my thigh next month. It is expensive because it is microsurgery. It is scheduled to take 7 hours of surgery and 7 days in the hospital.

Without it there will be virtually no "fat padding"between the skin and the rib cage when the breast capsule is removed. It is scary. I have found no one on this web site having had the procedure. I am long waisted, small breasted to begin with, so there are fewer options available to me using my own tissue.

I would advise taking your time to consider your options and get information from leading institutions. Some plastic surgeons are not up to date. I think more of us should consider the microsurgery options for healthier breast reconstructions options. Replacing implants has been traumatic and embarrassing for me each time. Good luck.

Thanks for all the replys.  This is my first post so it is very refreshing to find such a supportive community that is willing to share their experiences so freely.  Deciding to reconstruct or not to is such a hard choice for me, partly because I just don't know how I'm going to feel with either outcome once its finished.  At my age, confidence and intimacy are such big factors.  It is awesome to see so many of you that are so completely confident in yourselves even though you chose no reconstruction.  If I do choose not to have reconstruction, I don't know that I will be that confident.  Yet living with imperfect reconstruction could be just as hard.  I say imperfect becuase I am not willing to go with silicone implants(if I have the surgery) and saline are by no means going to achieve an optimal result in me because I am so small.  How do you choose between one crazy looking chest or another?

Facecrafter, I totally realize that no one on this site is TELLING me what to do and I DO greatly  appreciate everyones opinion.  That is why I am even posting.  You guys have been through this when everyone else around me hasn't.  I would rather someone tell me something that I totally do or do not agree with, than to have someone tell a rosy feel good answer.

The reason I say I don't feel I would get a good result with saline is than I am 4'11" and 100 lbs.  I have a very small frame.  So small, in fact, that they don't even make a tissue expander small enough for my chest wall (though they do make implants small enough).  I have very very little breast tissue on the non cancer side.  So little that if I didn't have reconstruction and i didn't have a bra on, one would not be able to tell which side was the mastectomy side (with clothing on of course).  That being said, my PS has warned me that there will probably be rippling of the implant and that saline will not look as natural.  He does do flap procedures, but as I am so thin, I am not a candidate for those.  Silicone is the logical choice for these problems, but I just don't feel like the science is there to back up the safety.  There have been valid and fairly recent studies that report that women with silicone implants have a 2-3 times greater risk of lung cancer and brain cancer.  Since my grandfather had brain cancer and almost every single one of his siblings had lung cancer (along with all of my grandmothers siblings dying of lung or colon cancer) I feeling like using silicone is just increasing my chances there.  I could be totally wrong, but mentally I think that would always be in the back of my mind.  Ya know.

Anyway, that's just some of my thoughts.  What's your take on it? Thanks, Denise

Silicone is the logical choice for these problems, but I just don't feel like the science is there to back up the safety.  There have been valid and fairly recent studies that report that women with silicone implants have a 2-3 times greater risk of lung cancer and brain cancer.  Where are the studies?  I would love to see them. 

 The outside of a saline implant is silicone, the same as a silicone implant, only the fill is different.  Here is a YOu Tube video that shows the two implants. : 
   http://www.youtube.com/watch?v=9vFyAEgqJSw

JUDY

These studies were conducted by the National Cancer Institute.  You can find them on their website, NCI.org.  There has been one other study that said that the propensity for brain cancer found in the NCI studies was not statistically significant, but the lung cancer was still found to be the same.  I found that study in an article in the Annals of Plastic Surgery.  Anyway, for me even if these numbers were found out later to be not all that conclusive, I think I would still be bothered by them.  With such a strong history of Cancer coming from my father's side of the family even a remote chance (statistically significant or not) is too much for me.  That may seem silly, but If you've ever watched someone die of a brain tumor you probably would feel the same way.  I know the shell of an implant is silicone regardless of the fill, but completely solid silicone has been used in medical devices and studied for many more years.  It has a different chemical make-up also.

Renata, sorry to freak you out and thanks for sharing your experience.  Realize, that I am probably letting this bother me more than it should, but it is better to think about it first right? 

This is what I was told by my breast surgeon...We were not talking about a cancer in the chest wall..  We were talking about, (and i was talking about) a cancer that is either in the muscle or any tissue that's left in the breast..It was the implants getting in the way of  finding a recurrence that I was referring to.  It is incorrect to think they get in the way of detection, as many women do.

I just didn't want someone thinking that an implant would make it harder to find a recurrence.. sorry if I confused.  JUDY 

Hi all,

No need for most of us to get worried. The study is from the National Cancer Institute website, : "www.cancer.gov". This study is for women who have had breast augmentation (see the reference at the end of the article.)

From the National Cancer Institute:

http://www.cancer.gov/cancertopics/factsheet/risk/breast-implant-study 

* Women with implants were not at increased risk for most cancers with the exception of respiratory and brain cancers. The significance of the increased risks is not clear.

NCI researchers did not find increased risks for cancers of the stomach, large intestine, cervix, uterus, ovary, bladder or thyroid. Likewise, neither connective tissue nor immune system cancers such as soft tissue sarcomas, lymphoma, and multiple myeloma, developed at higher rates. These cancers were previously linked to implants in smaller studies. The cancer rates for brain and respiratory cancers, however, were two to three times greater in the implant patients compared to other plastic surgery patients; only the rates of respiratory cancers reached statistical significance. The significance of the findings is not clear. It is possible that the higher risks observed for respiratory and brain cancers are not related to exposure to silicone, but are due to either chance findings or to factors common to women who choose to have implants.

Reference: Brinton LA, Lubin JH, Burich MC, et al. Cancer Risk at Sites Other than Breast Following Augmentation Mammoplasty. Annals of Epidemiology May 2001;11(4):248-256.

Your welcome!

I think it's interesting that the research states that the significance of the findings is not clear and ends with "but". I think they are wondering if women who choose breast augmentation smoke, drink or take drugs more on average than non-augmentation women. Or, do they have other lifestyle or risk factors? This would require more analysis of their information or more research into those questions. Because this study excluded (I assume) women with breast cancer, it might be reasonable to wonder if women who are treated for some breast cancers actually are at lower risk for the aforementioned cancers as a result of treatment. So many questions! How can we know? It's only one study.

Do your family memebers have other risk factors for lung cancer? Do you? I think, if this is a concern, you should thouroughly research it, discuss it with your doctors, etc. Perhaps breast implants don't pose a greater risk for you? Scientific writing can be confusing and I think there is a tendency for us to read information online and not understand the actual risk for us. I also think there's a lot of unwarrented hysteria about implants because of general misinformation. I have silicone (Allergan Natrelle) implants and don't worry about any additional cancer risks, but that's just me. Again, I would discuss your concerns and risks with your doctors. Hope my ramblings are helpful!

One more ramble...

It's my understanding that the "cohesive gel" implants were widely studied and have been in use in Europe for quite some time. There have also been fairly long studies done here in the US. I don't know the numbers, but I would think any significant problems would be showing themselves by now. You sound like you are in a unique group. I can understand your concern! None of us can predict the future. We can only assess our options and risks and then make a decision. Like someone mentioned above. There's no hurry. You can always decide to do something later. I was a full "B" before my MX and I'm happy to have reconstructed breasts. That being said, implants do have their issues. I'm not completely comfortable with them yet and somedays think I should never have done anything. But mostly, I'm pleased to have had reconstuction.

Finally, I found a great set of pictures on Flicker (search Google images "after mastectomy topless beach") before my MX. They are of a woman who had "opted out" (for now). She looked so happy and was having fun going topless at the beach! There's something to be said for that!

"I guess the hardest part of this is not knowing! I don't know how I'll feel without implants and yet I'm not sure I'll be happy with them. How does one figure this out?!"

In that one sentence, and this is only my opinion, it sounds like you need to delay reconstruction. Then you can answer part of your question....how will I feel without implants? I waited nine years for reconstruction, and there is no need to hasten a decision. (I didn't have skin sparing mastectomies and it didn't really change my outcome for reconstruction to the degree that I have any regrets or concerns) Thankfully, there is no time limit or ticking clock for reconstruction. That gives you the advantage of experiencing the first scenario, and giving yourself time to see how you DO feel without breasts.

Regarding your risks with implants....regardless of science, the statistics, etc YOU have to decide what is right, not science. (I say this only because, in this instance, you are not making a decision that would be medically unsound. Not having reconstruction is not risking your health) You believe you have a risk if you get implants considering your family history. Don't underestimate the emotions involved here. If you get the implants, will you live a life of fear? If you get the implants and you are diagnosed (God forbid) will you blame yourself and the implants, even if "science" says there was no correlation, you would have had the diagnosis regardless?

Just some food for thought...I believe the emotions have a lot to do with our physical well being.

Hope this helps!

Carolynn

I just had my expander removed last week due to some complications that had developed (I think they filled me too much and too soon after one of my chemo treatments).  I was glad to have it removed because the longer it was in there, the more I regretted my decision to have reconstruction.  It had been told to me that the implants are not a permanent solution.  Apparently, they only last for 15 to 20 years and then have to be replaced.  I'm not fond of having surgeries, so I was not liking the idea that I'd have to go in for a replacement.  I'm about 10 years older than you, so that would mean I'd be in my late fifties or early sixties having surgery again for implants.

Take your time in your decision and do as much research as possible.