Reconstruction, why or why not?

[fauxgypsy]

I am scheduled to have a mastectomy in August. I have decided to delay my decision about reconstruction to a later time. I really hate having surgery and have never considered having any type of plastic surgery. I know this is different from a face lift, etc., but right now I just want to get this over with and heal. I am interested in hearing your reasons behind the decisions that you have made one way or another about reconstruction. I am curious as to how many of you decided not to and why. I guess I just wonder how many women feel like I do about more surgery.

Leslie

[Lolly]

Hi Leslie,

I elected not to have reconstruction after left-modified-radical when I was diagnosed in 1999, just wanted to heal and get on with treatment, just as you are contemplating.
I haven't regretted it. I ended up having a right simple mastectomy 2 years later, after treatment for recurrence, and again decided against reconstruction as I was at that point in total remission and wanted to savor being cancer-free.
From those I've talked to directly who've had reconstruction, they're split about 50/50 regarding satisfied as opposed to not satisfied because of complications.
I don't think anything is lost by delaying a decision until after treatment.

<3 Lolly

[Mary Jo]

I, like Lolly, was just so happy to have had surgery over with. Chemo started 4 weeks after surgery and then it was on to radiation. When radiation was finished they found a suspicious area in my other breast and that turned out to be benign BUT at that time decided to have that breast removed as well. Even with only 1 breast I wasn't planning on reconstruction but with having both gone and now feeling even, definitely knew it wasn't something I wanted to do. That being said, knowing all treatment was over with there was no way I wanted to walk down another road. I was very content with being breastless and NED.

Also, like Lolly, I've heard conflicting things about reconstruction. Some are thoroughly pleased but about as many have had lots of problems and have regretted walking the reconstruction highway.

So, in all honesty, me personally have never regretted not having reconstruction. My prosthesis "work" just fine and if I opt out of wearing them, I'm ok with that too.

It is a very personal decision and only one you can make for all the reasons that matter to you. Good luck in your decision process and hopefully we on this board can help make the decision easier for you.

May God's Peace surround you today,

Mary Jo

[tousled1]

Leslie,

I considered reconstruction in the beginning but when I found out that I'd require radiation after surgery that meant that reconstruction would have to be put on hold for several months after completion of radiation. I'm glad I didn't have the reconstruction and am quite comfortable with no breasts -- and I was a D cup before. I have my prothesis and usually only wear it when I'm going out somewhere, other than that I rather enjoy being flat chested. I can now wear smaller tops. It's a personal decision and one that only you can make. Do what you think you will be comfortable with.

[Audrey]

I had a mastectomy in 2001 with a small saline implant (with expander) put in at the time of the surgery, plus a breast reduction on the other breast to match--It was great going from a D cup to a small B, so much more comfortable. After the plastic surgeon puts the implant in, you have to keep going back for him to inject saline into the impant to fill it up. Then you have what they call "exchange" surgery where they remove the temporary implant and expander and exchange it with a more permanent version. In 2005, I decided to have a prophylactic mastectomy on the remaining breast, following a diagnosis of lobular carcinoma in situ. After that surgery, I had a saline implant again, but was soooo sick of surgery I never did go back and have the exchange part completed. I'm still considering having nipple construction because although the reconstruction looks good enough with clothes on, it's so weird not having any nipples! But after I talked to a good friend of mine who had nipple reconstruction, she HATES it since her fake nipples are always protuding and she can never go without a bra, plus she wasn't happy with the results. It's a difficult decision, isn't it? Some people fly through surgery and all these difference procedures, but I couldn't stand the thought of having to deal with drains again, etc., so I delayed completing my reconstruction. Hope this long saga is somewhat informative for you as you make your decision!

[Margerie]

I had reconstruction almost a year after my first mastectomy. Did prophylactic mast and immediate recon on the "good side". Procedure was a DIEP flap. I had nipple/areola reconstruction in May. Except for the interesting scars, very natural looking and feel like breasts to me. The tummy tuck was a nice bonus. I didn't realize how much I missed having 2 breasts until I had them again.

That said- it was 10+ hours of surgery and probably a month of recovery. I think it is like childbirth- you forget some of the gory details and time. So it is not a risk you want to take lightly. For me, surgery is no big deal- have had a lot of practice by now-LOL. I consider myself lucky to have had no complications. It probably would help if you had a consult with a couple of plastic surgeons, ask about complication/failure rate. They will probably give you some phone numbers of their patients. Although- they probably don't give you the ones that had a lot of problems.

[sassy]

My surgeon did not recommend immediate reconstruction, so I opted to wait which turned out to be a good idea since I had to have radiation. What we thought was going to be Stage I, turned out to be Stage 2B with 5 positive nodes.

As yet I have not had recon, very comfortable with my prosthesis. I'm not ready to jump back into surgery. I've had several problems since dx with different medical maladies.

I feel that one day I will have recon, DIEP most likely. Implants are not an option for me as I have strange reactions to medications, foreign objects, latex, etc.

It is a personal decision for each.
________
Medical marijuana seeds

[Jade]

I asked my onc the question "If I was your wife or daughter, would you recommend for me to have reconstructive surgery?". His answer, "No".

Like a lot of us, I just didn't want any more surgery after 3 surgeries in 6 weeks when first diagnosed, and then trying to recover from that while going through chemo. Enough already! Plus, I've always been concerned that messing around in the "cancer area" could somehow "reawaken" the cancer cells (some say it's a fallacy but to me it's logical). But my onc said research is looking into the effects from the anaesthetic, something about completely killing the immune system while the body is under surgery, therefore possibly opening the "floodgates" to anything that wants to invade. Lani, Becky and others are no doubt more knowledgeable in this area than me, but when I phrased the question the way I did to my onc and he said "no", that was all I needed to hear. I'm sure it wasn't the first time he'd been asked and obviously had good reason to answer the way he did. (He's a highly respected, top-of-his-game doctor.)

I don't want to spend ONE MORE DAY, HOUR OR MINUTE sick and/or in hospital, so that's why I decided against reconstruction. I will say, however, that being 51 has played a large part in my decision. I'd probably feel different if it was ten years ago. Whatever you decide, I wish you all the very best.

[fauxgypsy]

I want to thank everyone for theirr honest heartfelt replies. I have already decided against the surgery but I also know that I might feel differently about it after the surgery. More than anything I wanted to open up a discussion about it. There is so much emphasis in our culture on the exterior and on being perfect. Women with wonderful bodies go through surgery to get the shape of boob that the media deems perfect this season. This is not a new phenomenon. My aunt told me how they bound their breasts to get that flat chested look that was so popular in the 1920's. And as we get older there is that same push to try to look younger. I can't remember the quote about not trying to get out of life perfect and untouched. I think someone may have quoted it in the forum somewhere. I just want to live as well as I can, as long as I am me. This body is a temporary vessel, a machine in a sense, to get me there. I'll take good care of it, but it is not me. I'm sure I'll get more dents and my paint job will fade, but as long as it runs, that's what is important. To try to keep it unblemished and in mint condition would be like buying an off road vehicle, putting in it the garage, working hard to make payments on it, spending your free time waxing it, oiling it, showing everyone your beautiful spotless mudtruck and never using it. Remember when you were a child, scars meant something. "Look what happened when I learned to ride my bicycle" or " see, this is where I broke my arm, falling out of the apple tree" back before we started seeing this body as something to dress up and show off. I want to be able to say, "see this scar, it saved my life." Well, enough of my soapbox.

Leslie

[dlaxague]

Interesting that this discussion has ranged into so many aspects of reconstruction, and also that most of us have related NOT having reconstruction. I know that there are lots of women who are totally happy with their reconstructed breasts. They should report in, to balance this topic.

What bothers me about this issue is that often the decision is made in the heat of the diagnosis-moment. In one breath, the surgeon may be making recommendations for (truly) life-saving surgery, and in the next breath, discussing the plastic surgeon referral. I think that women are not in a good state at that time to sift out the fact that reconstruction has nothing to do with cancer treatment. On the other hand, for some, immediate reconstruction seems to make a big difference in their attitude about their losses to cancer. It's a hard, and very individual question.We can relate what worked (or not) for us individually but each person will have a different "right" answer for themselves.

I didn't have reconstruction after bilateral mastectomies, wanting to get on with treatment as quickly as possible. But at the time of diagnosis, I thought that eventually I would consider reconstruction. Like many of you have said, I found that I did not like being a patient, and more surgery that was not medically essential did not appeal at all.

In addition, I found that I could not wear my prostheses. I tried. Lovely bra, comfortable little things - I'd put them on but they never made it out of the bedroom. To me (me only), they made me feel costumed. They were foreign things on my body that were there only for my vanity or my desire not to shock or offend. At first it was very weird to go flat. It felt so obvious, so deformed, and somewhat exhibitionist. But over time I realized that: 1) no one else was really noticing - at 50 and never pretty nor slim - it was only me who seemed to notice, except maybe at the beach or gym. 2) my loss was not my fault and I owed no one an apology nor camouflage 3) I've always valued function over form and this flatness fit with that approach (my closet floor has only birkies, water shoes, and hiking boots - function and comfort above all).

So I reasoned that if it felt weird to have these "things" on my chest - reconstruction would not feel much different to me. It's true of course that I miss the presence of breasts, but even more, it I miss the sensation of them which would not be restored with reconstruction.

In conclusion (finally!), I'd say that I'm content with my decisions, but I don't think I will ever say that I'm happy with my flatness. On the big scale, flatness is WAY down there in importance but still - I do miss my breasts - don't we all?

One more thing - recommending for or against reconstruction is far outside the scope of an oncologist - I think it was wrong for Jade's oncologist to weigh in on this topic, especially with such a strong opinion. We look to our providers for expert, EVIDENCED advice. There is no evidence to support his theory. It IS an interesting theory, although what I've heard is that surgery (not the anesthetic) can release growth factors that could promote growth or metastasis. This theory would relate to any surgery, including the one for primary disease. Definitely an interesting topic for a separate discussion thread. The idea about suppressing the immune system lacks logic. If the immune system worked on its own to stop cancer, we wouldn't have to be tricking it with vaccines so that it could help. Lots of cancer probably IS eradicated by our immune systems every day - the unsuccessful cancers. The successful ones succeed in part because they evade detection by the immune system and/or actually harness the immune system to help them in their growth and travels. It's not a weakness of our immunity but a cleverness of our cancer.

When I was at Project LEAD in Seattle, Nora Disis from UOW was one of the instructors. An article appeared on the wire services that week about stress weakening the immune system and "allowing" cancer. We asked her about it - I think her reply was "that's crap", and she graciously proceeded to enlighten us during an impromptu lunch chat.

Debbie Laxague

[fauxgypsy]

I just realized that I may have sounded judgemental. I don't mean anything I said that way at all. I think we each make the decision about reconstruction that is best for us. It just sometimes irks me that women are so pushed to always be beautiful or at least as beautiful as they can be. I hate wearing makeup most of the time. I never quit feeling it on my skin. I made a decision many years ago that it just wasn't important to me. I wasn't fanatical about it, I would wear it occasionally, designers open house black tie, maybe, special occasions. I wear some now just to have eyebrows. I put on my eyes, so to speak, and a little lipstick because I have been so pale. It seems to make other people feel better. I guess I am a bit of a hedonist. I don't like to do things that are physically uncomfortable.I have noticed that since all this started I have wanted to wear more feminine things, more color, more jewelry. But I have worn my wig only once this summer. It is hot and itchy. So I made up some really bright, funky do-rags and I wear these a lot.
The point I am making is that so often we do the things we do because other people expect us to. If my mother were living I know what her opinion would be. Reconstruct, although I may be doing her a disservice. Someone I know told another friend that she wasn't sure she wanted reconstruction but her mother and her husband wanted he to. She has started the process.
Leslie

[Lisa1962]

When I first saw the surgeon with my lump we immediately spoke of mastectomy and reconstruction - it was all so overwhelming and there was so much information.

Well, it turned out that I was Stage IV from the onset - so we scrapped the immediate surgery and went to immediate systemic treatment. Now over two years later and two years of NED - I keep having odd mammograms - "slight progression of calcifications" while the rest of my body seems to be pretty darn good. So my doctors and I are considering mastectomy again. I just want to get the darn things off - they tried to kill me once - who said that they won't try again.

During these two years I've thought over and over what I'd do - and I keep coming back to having reconstruction - it's not even a hard choice for me - although I know it will make the recovery a bit harder. I was a 42 year old mom of a 5 year old when this started. I was young acting and looking and active. I still want to approximate that - it helps me emotionally to still see "me" when I look in the mirror.

Now I have to figure out one-sided or bilateral - and which kind of reconstruction. I'm a DD cup now - and I'll want to go smaller if I'm going to do this.

That's what I've been thinking about this. I'm glad I've had the time to mull this over rather than having to decide quickly.

[Alice]

At first I wanted to have bilateral mastectomies but the surgeon felt this was doing unnecessary surgery. His opinion was that I had a much greater chance of a recurrance of the original cancer than having a second primary in the other breast. I also was unsure about reconstruction at the time of surgery and It was a high probability that I would have radiation. I just saw him for a 18 month follow up. This is the first time he asked me if I was considering reconstruction. His opinion now is that I have been cancer free for long enough that if I want to do reconstruction that there is no reason not to at this point.I guess what I am trying to get at is he gave me time to heal both physically and emotionally so that I could make a less emotional and reactionary decission. I think this is the way it should be. I have decided to do a tram flap and simple mast on the other side, although the thought of more surgery is oppressive. The thing I miss most about my apearance is just being equal.

[Emelie]

I too, have wrestled with the thought and the process since my diagnosis. I am healed now from the surgery and the radiation and it looks good. My main problem is not being equal and not looking like "me" in the mirror. You would think that at 52 it would not be a problem, but I am a small person with a C cup on the right side. When I don't wear my "buddy" I look very strange. I am fine at home, but when I go out without anything, I tend to slouch so you can't tell as easy.
I am leaning toward reconstruction with a Tram or a Diep so I won't have to deal with it.
One item that I have not heard from you ladies was how you husband felt about it? Mine has been wonderful through the whole thing. The only thing he will say when he see's me undressed is how sorry he is that this happened to me. I feel bad that when he see's me, he thinks about the cancer and what I, we, have been through.
I wonder, does having the reconstruction take any of that away?
If anyone can help with that question, I would really apprecatiate it.
Enjoy today everyone,
Emelie

[Vivian510]

Hi Leslie,
I am 58 and had mastectomy Dec. 06. I decided, as you did, wait until chemo and Herceptin end then think about it. I just don't know right now. Finished chemo in June,07 and on Herceptin until next April. Herceptin is being withheld for the next 6 weeks because of MUGA indicating 40% Left Ventricular Ejection Fraction...a drop from baseline of 65%.
I feel good, am working everyday. I feel confident that things are good.

[Sheila]

I am one whose chose reconstruction a year and a half after my mastectomy. If I could turn back time.....I would have left everything along. Itruly felt more whole with one breast than I do with a reconstructed one. Mine was a tissue expander and silicone implant....it is still sore now 3 1/2 years later.....If I evewr can get to good ole NED again, I want to have it removed!

[tousled1]

This is a great discussion and each of us has their own experiences/feelings. I know myself that I have gone to wearing much brighter colors than I ever did before breast cancer. I have no breasts but when I wear the bright colors it just makes me feel better -- puts me in a better mind frame. It's good that all topics can be discussed on this board.

[sherri]

My dx was in December 2004 with stage IIIC IBC, so reconstruction was out of question, I finished chemo in March 2005, Left Mastectomy one week after, then radiation (25 sessions) and Herception for one year, in 2006 I statred thinking about reconstruction, I'm physically very active and I hated the way I felt during exercise. After lots of reserach I did DIEP in January this year 1st stage and 2nd stage in June. I was one of the lucky one with no problem and very fast recovery (1 week after each surgery). I'm glad I did it and I know I would have had another opinion if it would turned out to be difficult. infection, extra surgery etc...
I have scars, but it feels like old one, I can go with or without bra, and they look great.
For people who are happy with no reconstruction, I salute them and I think they are doing the right thing.
For people who want to do the reconstruction there are several issues I recommend to consider:
- First you have to be very healthy: good immune system, strong heart, no any other problem, because the surgery is no joke.
- Second, get the best PS to do the job for you, I went to NOLA and I had the best Doctor.
- Like any other things in life, there is no guarantee and you take a chance doing this.
For me I thought if I 'll be around for 1, 2 or more years I would be happier to have breast. This is totally personal. On the other hand I feel guilty becuase the amount of money I spent to do this surgery (I'm from Canada, and do not have insurance in US. I could have done it in Canada 100% free, but for DIEP we don't have the best PS) I could build a school in Africa. But I decided to make sure I'll build a school in Africa, before I die and that is for sure.

[Jade]

Hi all! Great input on this topic, glad to see it out there! Just wanted to respond to your post Debbie, re the opinion given by my onc. The key here is that I didn't ask him for stats and evidence, I asked a question to which I wanted a response from the heart, which I knew would take into into account his decades of knowledge and experience with breast cancer patients who have had/not had reconstruction, who have had/not had recurrences. I wanted to know what he would advise his own wife or daughter.
I loved your quote about "not a weakness of our immunity, but a cleverness of our cancer". It is so important to note that reality, for all of us with this insidious disease who ever feel guilty or blame ourselves for somehow causing our cancer. Love to everyone,
Jade

[naturaleigh]

When I was first diagnosed, my surgeon and Onc. said one good thing about this is you can be Dolly Parton if you want. I told them I was already Dolly Parton and I did not want to be her anymore. People always said I was blessed, but I could never find where the blessings were.

I start my reconstruction on Sept. 13 and I am very excited about it. I did not get any prothesis so I have been walking around for almost 2 years lopsided. It is hard wearing clothes, I wear baggy shirts in hopes to hide my missing breast. I will be getting my good side reduced in hopes to be able to wear cute clothes and blouses. I have never been able to in the past because of my size, when I would find a cute shirt or blouse, I was nothing but boobs or the blouse would gap open.

I also decided on reconstruction because of lymphedemia. I have to wear the arm and hand piece everyday and I did not want to have to worry about putting in a prothesis everyday as well. I started out with a foam prothesis and was constentantly having to push it down because it was always riding up. I got mad at it one day and threw it away. I figured having reconstruction would be a way for me to see my "used to be" normal self again.

Anita