decision time coming up.
I've had a lumpectomy and my little breast looks pretty deformed and my doc. wants to do another as the margins weren't clear. My feeling is that the breast will look even worse after that, especially after radiation so I've pretty well decided to have a mastectomy with reconstruction. I have also been considering doing a double so: l. I wouldn't have to think about it anymore 2. so they would both match 3. to decrease chance of reoccurance... as an aside, it was simply because of an expert radiologist the cancer was found now. Has anyone had this done for these reasons and are you happy or sad you made that drastic decision. I had wanted a tram to use my own tissue, but am not sure if that would be possible. I have an appt. with the only p.s. who does trams at this Kaiser on Wed. the 7th.
Comments
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Hi hymsie,
So sorry you are having to join us but believe me you will receive lots of support and information from lots of experienced women on this board.
I was diagnosed with DCIS non invasive in the right breast but chose to
have a bilateral for the same reasons you list. I was not a candidate for
the DIEP procedure so expanders and implants were my only option.
I would do everything the very same if I had it to do over again. It was
the right decision for me and you will make the best decision for you.
Just follow what your "gut" is telling you to do!
Ask lots of questions and do lots of research!
huggs, Sherry
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Dear Hymsie,
I had a lumpectomy in my left breast to remove 2 tumors and the path report came back without clear margins. They also found 2 lymph nodes affected and DCIS so my doctors strongly recommended I have a mastectomy. My right breast was fine but I chose to have a bilateral. I am 40yrs old with 3 young children and didn't want to risk getting cancer in my other breast.
As Sherry says, everyone makes their own decision based on what is best for them. For me, choosing a bilateral also meant I could opt for an easier reconstruction in terms of surgery - I didn't want to do any sort of flap and my preferred option was expanders and implants. I wasn't a candidate for a tram and I didn't like the idea of a latissimus dorsi because of the scar and potential limitations of muscle movement. I just finished my treatments and am due for surgery to replace my expanders with implants on Nov 21st.
So far, I have no regrets about my decision. I did my research and chose the option I thought was best for me.
Go in to your doctor's appointment with a list of questions so you don't forget what you want to ask and try to make an informed decision.
Good luck!!
xx Jackie
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I had the DCIS in my right breast - didn't get clean margins after lumpectomy so went on to the mastectomy. I listened to the statistics and only did the right side with a free tram. After the surgery, while I was researching some healing problems I was having I got more information that made me wonder if I should have had a bilateral. No real reason - just wondered. Would I spend the rest of my life waiting for the other shoe to drop?
Well, during my Stage 2, we did a reduction on the left breast and the pathologist found lots of LCIS and ILC. A total surpirse since I had a mamogram just 2 days before to make sure there were no surprises. Totally clear! So, then I had to go back into surgery and use a different reconstruction option.
If I'd had a crystal ball and known what the future held, I'd have definitely done the bilateral back in January and had it over and done with. But, really, no one expected this would happen and everyone was totally blown away by the news.
This isn't to scare you but just to say that if your gut is telling you to go all the way I think you should listen to it. Unless, of course, your gut is like Chicken Little.
Do what feels right to you.
Kathy
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Dear Hymsie:
I'm very sorry you're on the emotional ride we've all been through. It's good you found this site. It's helped all of us.
I basically have the same story as Sherry & Jackie. I also had L. breast DCIS, non invasive, stage 0, grade 3. I had the lumpectomy and Sentinal lymph node biopsy 7/17/07, 4 out of six dirty margins which would have required another re-excision of the lumpectomy site and no guarantee they would get it all. (I schedule these kind of surgeries for my job and had a lot of time to think about what I would do if I was ever faced with it. Little did I know my time would come...)Anyway, I opted for bilat. mastec. w/ tiss. expander reconstruction on 7/31. They got all of the cancer! It was a rough ride for the first month or so, but there's no getting around that. It can be painful at the beginning and then just plain uncomfortable for a while. Some do better than others quicker than others. Tomorrow morning I get my tissue expanders removed and silicone gel implants put in and I'm really looking forward to that.
Like Sherry, I would do it all over again. Personally, I couldn't handle the idea of having one removed and worry about the other. I'm a worrier, so this was the best decision for me. It's a personal choice. Also, I wasn't a candidate for tram and don't know if I could have handled that procedure. The main thing is you trust your ps, have a lot of support at home and work and take as much time off as possible. I was off 6 wks and needed it. A lot go back sooner. It's different for each woman.
You'll know what the best choice is for you. You'll also read about so many of these brave, gutsy women and that will inspire you and help you through the whole process.
My thoughts and prayers are with you. Hang in there. You'll get through this. YOU WILL.
Take care,
Katie
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Best of luck on your exchange tomorrow Katie!! It is a breeze compared to everything else you have been thru!!
huggs, Sherry
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I was diagnosed with BC 2 years ago at the age of 35. I had bilateral mastectomy and removed both breasts. The decision was not an easy one. It was later found that my "good" breast, was cancer free. I have moved beyond and have never looked back. Take your time making your decisions. Best of luck.
Dianne
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Hi Sherry, thanks for your response. This is a very difficult decision, as you know. I was wondering how you're doing now and how much weakness, pain, rehab etc. was involved and how your new boobies look. I would guess all is well since you're not sorry about your decision.....I have always been a health nut and never sick. Surprise surprise.
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Dear Jackie....thanks so much for your response. Good God, 40 yrs. old and 3 little kids....I'm 66, 44 yr. old son and 45 yr. old twins, retired, and nothing else to do but take care of this old aging body. I'll pray for you. You really have a lot on your plate.
I've done a fair amount of research, talking to people, reading Dr. Loves book.....a friend said today doing a bilateral with one healthy breast is like cutting off your head if you have a headache. Not quite. However, many people think its a pretty drastic approach. And it is. But it might be right for me.
I tend to be expedient, never have worn a bra, just like to get things done and move on, so we will see. Blessings to you.
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Kathy, thanks for talking to me. Your experience is exactly what I have held in my mind for awhile. Finding this present cancer was totally serendipitous since it hadn't shown up until the llth hour on the final biopsy. I keep thinking, what if there's cancer floating around in the other breast. undetected and I have to through this sh....all over again. That could be extremely IRRITATING to say the least.
However, I am eagerly awaiting the appt. with the p.s. He's the only one who does Trams and apparently is very skilled. I was reading Dr. Loves book about all the options and thought, I'll just wait and talk to him and see what he has to say. I don't want to overthink everything like I do sometimes.
Also, after talking to my surgeon, double trams are not usually done. Since my breasts are mini and my abdomen is not, maybe its an option. I just want to get it all over with, as much as possible. Blessings to you.
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Thank you, Katie. I know I will get thru it. The decision making process is the most tedious and frustrating and God knows, I've agonized, talked, researched this to death. I was blessed to only have a Stage l or II (they still haven't figured it out), estrogen positive etc.....all the good stuff, and I still have to go thru all the considerations because cancer is so unpredictable and wierd.
The recommendations of the doctors is just to do the mastec. on the one, maybe tweak the other one to match and do regular mammograms and do the 5 yrs. of hormone therapy. No chemo or radiation.....thank God for early detection. So, I think I'm pretty lucky.
Like you, I am a worrier. Unlike you, I don't have to worry about work, family and all of those responsibilities. I know it will take a time to heal, but that's o.k.
What a ride this has been.....blessings to you. Carol
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Sherry, my dx was invasive, ductal carcinoma.....but the sentinal node biopsy established there was no lymph node involvement, Thank you, God.....There are so many of us out there, in one stage or another. I've gone for yearly mamms for years and my Kaiser is pretty good coverage. The oncologist basically said we will do whatever you want us to do. wow. 40 yrs. of paying for medical insurance is finally coming back to me. Blessings to you. Carol
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Dear Hymsie,
We have a more in common then, I have a 4yr old son and 5yr old identical twin boys!
The reasons I felt so comfortable with my choice of bilateral are 1)my age 2) I had nipple discharge from my other breast 3) my bc was grade 3, and 4) I heard so many stories of women who had cancer on one side and later had it on the other.
Given I chose a bilateral, implants were an easy next choice. I was small to begin with at bra size 32a and it would be easy to give me a "matched set" with implants. That said, a twin baby belly would be nice to get rid of!!
The surgery was definitely painful/uncomfortable but there is no avoiding it whether you do one breast or both. Also, it's like childbirth you forget the pain with time. Expanders are ok, I suppose everyone experiences it differently but I find them awkward. Again, in the end I am really glad I made the decision I did. I would be poking at my right breast forever trying to catch any cancer early (I found the lump in my left breast myself) if I hadn't done a bilateral.
Wishing you well in your decision, you have plenty of support if you need it!!
Best,
Jackie
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OK, so my experience seems a little different and just thought I'd offer another perspective for you... I am 36, have two kids (age 2 and 5). Dx is below. Originally they thought I had only DCIS and did a lumpectomy. This found DCIS and IDC, with DCIS in all but one margin. My breast surgeon is the head honcho at our breast center-- truly one of the best! She said since I had small breasts (not even an A after nursing 2 children), a re-excision was not really a good option-- it would leave me disfigured. Also, if I did mastectomy, I wouldn't need radiation unless my nodes were positive (she was confident they weren't and they weren't at the final path). I went for the mastectomy. Had a hard time deciding to do one or both-- I did one. Because, per my surgeon: 1. having no breasts DOES NOT mean you can't get breast cancer 2. if cancer appears in the other breast it is most likely a whole new type of cancer, not the orginal (it doesn't jump breasts). 3. this was what I felt was good for me. I did an expander with implant to be placed hopefully by the end of the year (mostly b/c I figure if I ever do have to remove my other breast, implants will be the same b/l then, can't do TRAM twice. I was not a candidate anyway b/c not enough tissue and my pregnancies had caused a hernia in my belly button which was repaired a year ago-- they said TRAM not good to do b/c of previous surgery to the area). I had augmentation on my other breast at the time of the mastectomy-- it's great looking! And b/c I have small breasts my PS is confident they will match well in the end. She does beautiful work (I looked over pics beforehand of her work on bilaterals and singles). My breast surgeon also pointed out that it's easier to detect new cancer in the augmented breast now(not removed breast) b/c the implant pushes the tissue forward and makes palpation easier. Also if you have a center like mine that is used to imaging implants, the detection is the same whether you have them or not-- I'm confident a new cancer (if it ever even happens) would be picked up early between my exams, mammograms, and my docs who will see and feel me a lot over the coming years.
So, remember it's up to you ultimately as everyone else said. Everyone's circumstances are different. Get all the info as it pertains to you and also look at the skill level of your surgeons and how good your follow-up will be. I trusted both of surgeons completely and still do. And I'm a nurse-- so I know a lot of docs and am very picky. I also ask tons of questions and don't just blindly leap to a decision. Regardless of what you decide.. we're here for you to vent
Kathy
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HI Hymsie, just thought I give you my two cents. My dcis was found by mri. I then tested positive for brca2. I'm 48 with two kids 10 and 7. I opted for diep. Because the dcis was in a few spots lumpectomey would have left me quite deformed. I didn't make my decision for a bilateral till the morning of surgery. Because of brca status docs felt it was the better option so I went for it. Dcis side wound up having hidden small amount of invasive bc. Good side was still good. nodes negative. I do not feel that I cut of my head to stop the headache. My reconstruction is beautiful. Prior to surgery I did lots of research and couldn't understand why anyone would cut off a perfectly good body part. It was an extremely difficult decision. One which I have absolutly no regrets about. I did what was right for me. Though I no longer have the sensation in my breasts (this was a huge fear for me) it has not been as big of a problem as I anticapated. I must admit I am much more fearful of a pending oopherectomy and the surgical menopause that comes with it.
I would seek out more than one opinion for your options. You have the right to get the surgery of your choice .
good luck with your decision making
peace
melody
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Hi Hymsie & others,
I am also in the process of making the decision on what type of reconstructive surgery I want to have. I was diagnosed with breast cancer of the right breast in January of this year. I had 6 months of Chemotherapy to shrink the tumor. My breasts are large and trying to shrink the tumor first would gave me a better chance of trying to preserve my breast. As it turned out, I had a lumpectomy and the margins were not clear. I then had the re-excision and the path turned out positive for cancer. So now I'm opting for a full mastectomy of my right breast.
This is my first posting to this site and I so glad to have found some one in my same position. I've already learned so much and have new information to research such as Tram and Bilateral reconstructions just by reading your postings. I do alot of research and have a long list of questions ready when I walk in the Doctors office. I have an appointment with my Plastic surgeon on November 19th.
I'm 45 years old, one child and have been married for 20 years. This may be too personal of a question and I understand if no one replies but the lost of nipple sensitivity and the possible changes to my sex life is one of my concerns. I know what ever decision I make is about me and not really about my husband but he is a big part of my life and we've always had a pretty healthy sex life. Can anyone tell me about the impact of reconstruction on your husbands or life mates? Has reconstruction changed anything for you?
Also, my other concern or question is about having reconstruction prior to radiation. What is your experience or opinion?
Thanks & god bless
Annette
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hi Annette, , I can totally relate to your concerns as I'm sure many women can. I was completely freaked out about losing sensitivity in my breasts/nipples as that area was a big part of sex, for both me and my husband. That was one of my main thoughts to doing only one(cancer) side. I am happy to say that it was not as horrible as I expected (perhaps because I expected the worse!?) I did have a bilateral diep, my breasts look great (though no nipples yet) but of course the sensation is pretty much gone. I still have alittle feeling in the clevage area and on the outside area near the armpits. But as someone else said somewhere alot of the pleasure comes from the brain and I find that sex is still quite good. My husband says my breasts feel good, but different. He has been great through this whole ordeal and I am very lucky in that respect.
As far as the radiation question I think that if you have it after reconstruction your best bets are tram or diep as I don't think you can have it with implants, but I really don't know for sure.
Good luck in your decision making and make sure you get more than one opinion on your reconstruction as some doctors only do certain types and will not give you all the information if they don't do it.
peace
melody
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i too had the lumpectomy and my breast was indented. i chose double mast. even thought it was in only 1 breast. i didn't want to have to do this again or worry with it. althougth it was painful, i have never regretted it. i had tissue expanders after the mast. then implants. after this healed i had the nipple formed and aerola tattooed on. they look great. i'm glad i did it.
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Hymsie,
Once I found out I needed a mast to one breast, for me it was an automatic decision to have the other removed too...especially since I knew I wanted recon and they almost always have to adjust the "good" breast to match the recon breast. I figured if they have to do surgery on the other breast too, might as well go all the way.
The pathology was completely clean on my good breast, but I've never given it a second thought.
I had bilat diep, which is similar to tram, and was able to have both breasts rebuilt to approximately their pre-surgical A-cup size. And I was only about 20 pounds overweight. So it IS possible to get bilat flap recon of both breasts.
I agree with the other ladies here. Get 2nd and 3rd opinions from other ps's if necessary. Also, a very useful book is Kathy Steglio's "The Breast Reconstruction Guidebook". It goes into a lot more detail on recon than Susan Love's book, and talks about all your different options.
Good luck with your decision.
Mary
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Dear sherry, Jackie, Kathy, Katie, Di, Kathy L, Melody, Annette, Cydnee and Mary .....thank you all so much for sharing your stories and your support. I'm addressing this to all of you because I can't repeat this over and over. I'm very tired right now.
I met with the p.s. today. He was nice and very professional. He looked at my breasts, poked my abs, squeezed my back and sat down for an hour and explained each procedure. The Saline and Trams especially. Kaiser doesn't like the Silicone yet. I was focused mostly on using my own tissue if possible. I was a candidate for the Tram and he likes the "Free" Tram flap because the abdominal muscles are not so compromised. Its a long surgery 6 hrs. or so but the long term results are pretty good. To do a double and remove the good breast would involve 12 or more hours of surgery and really challenge the abdominal muscles. Once he went through the whole thing, I couldn't justify in my mind taking the good breast, undergoing the excruciatingly long surgery, freaking out my ab muscles more than necessary so have decided to keep my good breast and go for the reconstruction of the bad with the "free" tram flap procedure. He feels he can get a good match and I'll get a tummy tuck in the process which sounds like hallelujah time to me. Not to down play the whole thing, though. It will be a long surgery with a lot of microsurgicaly stuff involved, a painful recovery but I'm pretty strong and am in very good health otherwise, so it should be o.k. in the long run. I've also got a lot of people praying for me so altho its scary to get all cut up, I'm pretty sure this is what my final decision is.
The alternative: do another lumpectomy, have my breast further damaged and then burnt with radiation and God knows what it will look like after that. Don't think so.
or....do Saline implant.....this might be o.k. but won't match the other breast and I'm back to keeping the good breast. Saline has problems with hard casting in l out of 3 women. They look good tho.....but I'd like them to match.
or....do nothing. not good.....cancer could definitely come back or not even be gone now.
or.....have a mastectomy and no recon. I'm not ready for that one....
so, like you have all said. Its a personal, individual decision and each women 's body and situation is different. Each women has different and varied options. I consider myself blessed the cancer was found so early, is hormonly responsive to drug therapy and a flap is possible. Thank you all for your support and caring. This is a wonderful tool for all of us going thru this.
I have no b.c. in family, have always exercised, had 3 children young and menstruation older, eaten very healthy all my life, take vitamins etc......however, did take birth control pills for awhile, HRT for about 8 ears, smoked for many years, but not the last 16. Who knows.
I know women who have done all kinds of bad things and are fine and more good things than I have, and have died from b.c. Its very scarey because its so unpredictable. We can't blame ourselves.
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God bless you all......hymsie.....talk later. bed now.
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Hymsie:
Glad you've been able to make some decisions! You know you'll have our support through it all. Ask your doc about an On-Q pump for after surgery. My PS uses them and it was great. It's a pump that self regulates and infuses a lidocaine-like medicine into your breast that was operated on (they place it during surgery). it lasts about 3 days and then you remove it at home by yourself-- not hard to do, my hubby pulled it out when it was empty and I barely felt a thing. But it cuts down the need for oral pain medicine use. Not sure if you'd be a candidate since you're doing TRAM, but who knows til ya ask?
Keep us posted on your surgery date and good luck
Kathy
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Hi Kathy.....your story is pretty scarey; I hope I don't have those problems. You made the decision you thought best at the time. That's what I'm doing. If something else comes up, well, then it does. The idea of 12 to 14 hrs. of surgery with a double tram, the potential risks of that long under anesthetic, the abdominal assault, etc. etc. etc....just couldn't face it right now so am hoping the left breast is going to be o.k. If its not, I'll take the next step. This is such a trial.....bless you tho, and thanks for your feedback...Carol
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Annette......I'm not sure if you need radiation if you have a mastectomy; I guess it depends on the stage and if in lymph nodes; each case is different. Also, my understanding is that implants have no sensitivity altho a flap may develope some over time. Your plastic surgeon should answer all those questions. I found Dr. Loves breast book very helpful.....more information than you can imagine. The whole process is very trying. I didn't think I would ever choose a mastectomy but the lumpectomy was really pretty awful looking then I needed a reexision and rads so there you go. Good luck, keep us posted. Carol
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Carol:
Sorry if I freaked you out, didn't mean to.
Kathy
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hymsie, I just thought I'd weigh in here. I had a unilateral mast with expander placement, later exchanged for silicone implants (augment on the good side) and I have an amazing match. Just wanted you to know that it is possible to get a good match with implants. Best wishes with a difficult decision!
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These have all been great stories! Has anyone had a skin sparing matectomey and does it make a difference? I am planning double mast though cancer only found in left so far, but I'm not taking chances. I have two young daughters.
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twogirls,
I didn't have a skin sparing mast., but I can tell you it does make a difference in the cosmetic results. I have a friend that had skin sparing mast and you wouldn't know she had surgery unless you look really close. Me on the other hand, you can't miss the scars, granted I'm having stage 2 done in a couple of weeks and I'm hoping for some improvement with that, but I'll always have the difference in skin from the breasts and the belly.
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Hymsie - I don't know where you are in the Kaiser system, but I was willing to travel to get my reconstruction done by the best. I had IDC Stage II in my right breast that was completely removed by lumpectomy with excellent cosmetic results, but I am BRCA-1+ so a bilat. mastectomy was indicated nonetheless.
After recovering from chemo, I knew I wanted a skin-sparing mastectomy with muscle-sparing reconstruction. No one here in San Diego Kaiser is accomplished at the procedure - a DIEP or SIEA, which leaves the abdominal musculature intact. I, too, wanted no 'assault' on a major muscle group in order to have breasts, but I wanted soft, warm breasts made of living tissue. It took me a bit of fighting for it, but that's what I got!
My surgery - bilateral skin-sparing mastectomies with immediate reconstructions with SIEA on the left and DIEP on the right (the only difference is the position of the vessels in the abdomen) was only nine hours start to finish. My one-on-one nursing care post-op was spectacular. My surgeon has the flaps monitored every 15 minutes by Doppler ultrasound at first, gradually moving to every hour. You get an On-Q pump for the abdominal incision and a handheld morphine clicker for any other pain. I had NO damage to my abs. I could stand straight the next day. I could put my arms to the top of my head, too. I had surgery on Tuesday and went home on Friday at my request. I have a lot of feeling in my breast area, of course not in the area where the areola and nipple were. I was only about 12 pounds overweight, but carried most of it in my lower belly, so he was able to reproduce my pre-op 'C-cups' for me, while giving me the flat belly I had when I was 22.
My surgery was done at the West LA Kaiser by Dr. D.J.Lee and his team. Kaiser even pays for you to stay in a really comfortable room at a nearby Sheraton overnight when you have surgery scheduled with Dr. Lee in the morning - a welcome respite after dealing with LA traffic to get there! Another bc.org listmate had a DIEP w/Dr Lee about a month before mine with similarly happy results.
Just something to consider.
Best of luck to you!
Lisa
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Hi Lisa....I live in Santa Cruz County so already travel to Santa Clara Kaiser for treatment and really can't go to L.A. Co. I don't think but I have some questions for you. I don't understand why you would have a bilat mastec. indicated with Stage I+ cancer....and also chemo? Also, I don't know what a DIEP OR SIEA is.
After my lumpectomy, which was indicated with my Stage 1 +?( exact size not clear) my female surgeon wanted to clean up some margins, but because my breast is small it was deformed with surgery, as I said earlier. Another lump. was recommended to clear margins, but they never felt chemo or bilateral surgery was indicated. Why would your dr. would indicate both? I've made a copy of your comment to ask my surgeon about it. Maybe they're doing that here and I didn't get all the details.
Also, I'm 66 yrs. old.....how old are you? It sounds like everything went great for you, which is wonderful. Hope mine goes as well. Blessings to you.
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Hello Carol -
Sorry for any misunderstanding. My bilateral was not because of my Stage II tumor. It is because I am BRCA-1 positive. This means I test positive for the BRCA-1 genetic mutation for hereditary breast cancer - this is why I have breast cancer, this is why my sister was diagnosed at 29, why my great-grandmother died at 33, her sisters at 31 and 35 and her mom at 33. BRCA-1 carcinomas often recur in the same and/or opposite breast and are more likely to metastasize to soft tissue (lung, liver, brain) than bone. Most often they are premenopausal, triple negative tumors (no hormone receptors) so chemo is the only chance you have to fight 'em - so you hit and hit hard with the nastiest chemo you can find. BRCA mutations also increase a woman's chances of ovarian cancer exponentially, so most are advised to have oophorectomies (removal of ovaries and tubes) as part of treatment.
Fortunately, this is not a worry for you. A bilateral would have been elective, for your peace of mind. You have good reasons for choosing otherwise. A Stage I tumor, clear nodes, post-menopausal, hormone positive = very different situation. Your doctors have been advising you wisely.
You are right - I did have a good outcome and I feel blessed because many Kaiser patients don't even know that this option is available to them. Sometimes it helps to be a little bull-headed, I guess.
To learn more about DIEP/SIEA procedures you can go here:http://www.microsurgery.net/siea.html
It is similar to what you will be having except it leaves the muscle and, with the SIEA. even the muscle sheath entirely intact and uninjured.
Keep us updated on your progress as your surgery approaches. We're rooting for you!
Lisa
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