Dis Breast Cancer Survivors Part II -GAGWTA!

[lookingforward]

GAGWTA!

Yay, Maureen!!!!!!!!

OK, so now I've been looking into this Alloderm...does anyone know anything about "one-step surgery?" I am thinking if PS all of a sudden tells me that I do not have enough tissue to do the bilateral LAT flap that I will ask about Alloderm (he didn't do any measuring during our first visit, only examined the area). I realize I will need to consider implants if LAT is not possible, and from the little I've read, it looks like Alloderm is an alternative to having expanders. This is appealing to me.

TIA!
Dawn

My plastic used Alloderm on my mastectomy. You see, I am well endowed and he said he needed the extra wiggling room to make my breasts agreeably large (but not as large as originals). I am going from a D cup to a large B or C. So I had to sign a million documents agreeing to the donated tissue and it was used. My plastic was thrilled with the healing and how well my body adapted to the new skin. You can't tell and I don't know where it is,exactly, but it is there. The skin is tested and safe. Being 5'7" and of medium frame I did not want to go down to a really small size breast so I went for it. Insurance paid, too. My doctor stated one brand was better than the other but I can't remember exactly why. He has a large reconstruction practice and loves the flexability it gives him. I am, however, still using implants so I don't know if they substitute for one.

One of the ways you can do an immediate implant and not the exapander is to have a skin saving mastectomy that leaves enough room for the implant. I had two tumors so that was not an option for me.

 

[DeeCeeSW]

Snappy--yes, I did read about Alloderm over at FORCE. In fact, I wrote to someone who had a LAT 9 years ago (still happy with her decision) and she suggested that I look into it.

Maureen--I have DCIS AND Invasive DC (the 1.8 cm. tumor) in my right breast. I wonder if I can still have a skin-saving mastectomy? Typing this I realize that there is SO much I still do not know.

I did not know that expanders were needed before Weds. (when I saw PS #3) and today I learned that there is more than one "one-step" procedure available if I decide on implants.

I never explored any of this, because I have been blocking out implants for about 4 weeks. I now truly realize that implants may be something that's for me. I have a HUGE fear of the expanders and infection and just a general nervous feeling about implants in general.

Looking at the pics of LAT scars and reading more about real peoples' experiences is making me wonder if this procedure is really the one for me. I obviously need to discuss this further with my PS during our appt. next week. I am hoping he will say that "one-step" implants will be an option should I decide to forego the LAT.

"I am going from a D cup to a large B or C." This is exactly what I want to achieve.

My understanding is that Alloderm replaces the need for expanders but it will not replace the need for implants. I think that was what you were wondering about?

 

[snappy]

It is unfotunate that you are not finding out about these options from the PS's. I think the problem there may be that they do strictly the techniques they have trained to do. In a way that is good, you want a doc who is proficient. However, it means you have to still do your homework as to what is available, then try and find a doc who has experience. It nakes it hard on the patient though since what we find to read is outdated. And also, truly a good doc can look at your body and tell you what procedure would be best, even if it is not one he does.

I guess this is wehere networks like facingourrisk becomes necessary. When you are doing delayed you have the luxury of doing the homework at your own pace, immediate tightens the window big time.

Thank you Lookingforward for your input.

 

[ScarletFire]

I'm not a daily visitor to this thread but take a peak every once in a while. It seems there's lots of conversation about reconstruction so I think my experience is worth telling. Let me begin by mentioning I have no regrets.

A little over 3 years ago, I was diagnosed with DCIS and invasive DC (2cm tumor) in the right breast. There was no lymph node involvment. I had a skin saving masectomy and TRAM flap reconstruction in a single 5 hour surgery. The first few nights in the hospital were HELL but after a couple of weeks, I knew I had made the right decision.

I started chemo 3 weeks after surgery and I recall it being much worse than recovery from reconstruction.

I was in good physical condition before the surgery. At 38-years old, I ran five miles the day before surgery. Besides the cancer, I was healthy. I think this played a role in my quick recovery from the TRAM.

After the chemo and surgery, it took a several months to rebuild my strength. My very supportive DH began a daily walk with me. A year later, I was running again and I'm in pretty good physical condition today. I'm not as fast as I use to be but I barely notice the lack of stomache muscle. Of course, I'm not doing sit-ups.

My doctors did an incredible reconstruction job. Two-piece bathing suits are not a problem. Even the nurses at the hopital were impressed with the results. I don't mind answering any questions. I promise to check the thread later.

 

[Pea-n-Me]

Thanks for sharing your experience, ScarletFire.

Congratulations to Disfan and lookingforward to finishing up their chemo!

Dawn, it's good you're exploring all your options.

GAGWTA

 

[snappy]

Good to see you, Scarlet fire!!

You sound like you are doing great. Hugs to your DH for helping you get back on your exercise schedule.

Glad you posted your positive experience with tram flap, specifically with the skin saving type.

Dawn do you have multifocal? I have lost track. I think I am right when saying skin saving is not feasible with multifocal but it might depend on location.

Good question for the breast surgeons.

 

[DeeCeeSW]

Thanks for sharing your story, ScarletFire. My story is pretty much the same as yours except my tumor is apparently slightly smaller (and I hope it stays that way until surgery). I have no idea about lymph nodes but I think my doc is somewhat confident that they will be clear, but we are obviously not taking any chances and I am scheduled for a sentinel node biopsy on 4/4. Of course, if there are any positive nodes, my reconstruction wil be delayed.

I am not a candidate for a TRAM flap, only a LAT. I am becoming increasingly concerned about the scars as I will be having a bilateral mast. Not so much how they will look but how they will feel and what kind of shape my back will be in after all is said and done. Docs have been telling me that despite being "moderately obese" that I do not have enough fat on my back to make two "decent-sized" breasts without adding implants (their words). I have D cups and want B or C cups. I have been looking at some pics of women who have had the surgery and from the side they do look very small (w/o the implants). My feeling NOW is, if I'm going to need implants anyway, why go through LAT surgery at all, just get implants. Problem is, the thought of expanders is frightening after reading many stories about infection, pain, and later painful fills. I am hoping that the PS I have chosen does one-step implant procedures. We have yet to discuss this in detail because I told him that I had absolutely no interest in implants when we met.

Snappy--I do not believe that I am multifocal. The again, maybe I still have no idea what multifocal actually means, LOL.

 

[snappy]

Multi focal just means you have DCIS or invasive cancer or both in more than one quadrant of the breast. Basically the breast in divided into quadrants, I am not sure right now exactlythe way it is divided but mine (from the biopsy path report) was with one area in the upper outer quadrant, another under the nipple (retroareolar region). My surgeon wrote down multicentric on my biopsy report, sames as multi focal. Removing all of it and obtaining clean margins means a lot of tissue and skin is taken. Standard of care was and I believe still is to do a mastectomy not a lumpectomy for multi focal, as well as skin sparing apparently is not an option.

I would think you would have been told if it was multicentric or multifocal.

My biopsy has 2 parts, the biopsy took quite a while because lots of samples were taken from two distinct areas.

 

[ScarletFire]

My feeling NOW is, if I'm going to need implants anyway, why go through LAT surgery at all, just get implants.

I tend to agree. I've known women who got implants with no complications. I'd speculate that there are less complications with implants than the LAT surgery. You should speak to your plastic surgeon. It's a serious decision and you don't get to change your mind after it's done.

I hope your sentinal node biopsy is negative. In my case, that meant no radiation and a better prognosis.

 

[MerryPoppins]

Just thought I'd throw in another thing to think about. My PS told me that at my age, I'd probably have to replace my saline implant at some point in my lifetime. They will eventually rupture and need to be replaced. Supposedly, the saline is harmless and you don't have to go through the expander again, but you do need surgery to put in a new implant. It's my understanding that the "gummy" variety is different. I know someone here has that kind, so maybe they can fill us in.

I asked about this after my expander leaked and I was in line to have it removed and start the process over. I guess until that time I had thought of the implant as being a one-time fix. (After hearing that, I just reversed the reconstruction because I didn't want to face another possible surgery later on.) That's just another thing to think about.

I went to Palm Sunday services today. You were all in my thoughts, and I lit a candle for all of you. GAGWTA!

 

[snappy]

Thanks, Merry.

A dear thing to do for our merry little band here.

I believe Laura has the gummy implants. She had another set initially and had them changed out to the gummy ones sometime since this thread started back in May 2005 I think.

I don't actually think the gummies are permanent either.

Depends on your body and how it reacts to the implants I think.

Tram flaps are permanent but if you should ever need to do the other side, it is only a one time deal, you would have to do an implant or take the flap from the behind or the lat.

I actually think if you are doing only one breast, the flap ages at the same rate as your natural breast, where an impant won't and sooner or later that implant is going to be more perky than your natural side, can be noticeably so.

However, if you have a double, I think the implants make more sense, as long as you can live with the potential of future surgery to change them out.

Anyway, Scarletfire is right, you need to be at peace with whatever you decide. If you have any doubt I would do make the PS go back to the drawing board.

 

[DeeCeeSW]

Thanks, Merry & Snappy.

Thing is, everytime I think I know what I'm doing, I don't. Something else comes up, and/or I start to see things differently, etc. These decisions are literally the hardest ones I have ever had to make (and I've had doozies). So far the only definite decision I have made is to have the bilateral mast.

I was CONVINCED that the LAT was the only thing for me. NO IMPLANTS, I said! Now I am actually considering them. I finally get a surgery date and then on the same day, Memorial Sloan Kettering pops up as an option that was not there before. With MSK on the table, my Columbia Presbyterian appt. is TRULY just a second opinion and that's it. The receptionist at CP went through the trouble of having my path slides overnighted to her (I forgot to get them) and I would still have to travel 40 miles each way to pick my stuff up anyway, so I might as well hear what the doc there has to say.

My cousin is making plans to be here based on my planned surgery date, however, it is hard to make travel arrangements when there is still all this uncertainty.

Talk about creating stressful situations for one's self. I feel like the poster child.

 

[MerryPoppins]

I know you are like me...hate having multiple surgeries. But one option would be to just hold off on the reconstruction until you're sure what you want to do. There is no hard/fast rule that you have to decide right now. If you don't find the option that feels right (and I think you'll feel confident when you find the right PS and procedure), you could always get a prosthesis and just live with that for a bit while you make up your mind. The only thing you have to do right now is deal with the cancer.

It's spring break for us. DS is heading out in the morning for a fishing trip with his frat buddies. DD is home with me, hopefully cleaning her room. DH is working, at least the beginning of the week. I'm enjoying staying up extra late, because I don't have to get up at 6:15 in the morning.

GAGWTA!

 

[snappy]

I was thinking of suggesting waiting as well, Merry. I am glad you did, because it is one of the options that many take. Waiting doesn't mean no reconstruction, just delayed.

I kind of feel that I have added more confusion with some of my posts.

Dawn if you want me to bag it, tell me.

Merry, DS19 is home for spring break this week, but my girls have theirs starting Friday. I really wish they off the same time. This is challenging.

I fired up the riding lawnmower yesterday, the yard which still has a lot of weeds was looking straggly. There is alot waiting for me to do in the flower beds.

Work is so inconvenient.

I spent the better part of Saturday sending emails and preparing letters to upwards of 150 state legislators to ask that DD17 have a shot at the legislative scholarship (full tuition) that Tulane lets them award each year. That was a tall order.

 

[laurabelle]

~~~***GATWTA sistas***~~~

Dawn- I know people who've had bilateral lat flaps. If you would like me to put you in touch with one I'd be happy to, just let me know soon as I'm going away. Yes, I currently have cohesive silicone gel implants. The implants are fine, softer than saline...but my skin is so thin, you can pretty much see my implants. I know it's not that noticeable to others, but it bothers me. I really wanted a flap procedure, but I have the implants because I was originally told that I'm not a candidate for a flap without implant. I asked my PS if I should do some sort of flap now to bring in fresh tissue to help with the rippling and he doesn't think I have enough to do it bilaterally. I have a hard time believing that, but he's a perfectionist and I trust his judgment. Another flap to consider is S-Gap, my PS does them too. I am scheduled to have a scar revision next month, but when I get back from vacation I'm going to do some more researching on alloderm. I think it could resolve my rippling problem without having to go through the flap procedure, but I'm not sure if my PS uses it as he didn't present it as an option. I don't think it's enough tissue to replace a breast without an implant though. Supposedly at some point the implants will need to be replaced, and honestly if I could have done it without implants I would...and you know, we all have to do what's right for us at the time, but that doesn't mean we can't go back later and do something new!

ScarletFire- I'm glad you posted! It's always good to read positive experiences. I wish I could have had a flap. I know it is a harder recovery up front, but the results are wonderful!

Maureen-Congrats sista! I read that they put the alloderm under the skin, not sure if it's under the muscle or not. I'm hoping my PS will do this procedure.

My UC is still acting up. I go for my infusion tomorrow...trying to keep happy Disney thoughts in my head! Faith, trust, and pixie dust!

 

[snappy]

Dawn- I know people who've had bilateral lat flaps. If you would like me to put you in touch with one I'd be happy to, just let me know soon as I'm going away.

My UC is still acting up. I go for my infusion tomorrow...trying to keep happy Disney thoughts in my head! Faith, trust, and pixie dust!

Praying your infusion does the trick!!

Spread a little pixie dust for us in WDW, Laura. Have a great trip!

 

[DeeCeeSW]

No confusion here, Snappy. Please continue to give advice. I hear what you and Merry are saying and I have thought about delaying reconstruction, but, so far, every PS I have seen has said you get better results when it's done immediately, particularly when it comes to implants. I have been reading the same thing. I do not want to stress myself out about this. I know that I can have a procedure done and if I'm not happy with it, I can revise it later. Of course, I cannot undo a LAT flap, but I could add implants if I was not happy with my size. I can choose implants on their own and if I'm not happy have them removed and then go for the LAT....

Laura, I would like the name of the person who had the LAT, thanks!

GAGWTA!

 

[lookingforward]

No confusion here, Snappy. Please continue to give advice. I hear what you and Merry are saying and I have thought about delaying reconstruction, but, so far, every PS I have seen has said you get better results when it's done immediately, particularly when it comes to implants. I have been reading the same thing. I do not want to stress myself out about this. I know that I can have a procedure done and if I'm not happy with it, I can revise it later. Of course, I cannot undo a LAT flap, but I could add implants if I was not happy with my size. I can choose implants on their own and if I'm not happy have them removed and then go for the LAT....

Laura, I would like the name of the person who had the LAT, thanks!

GAGWTA!

There is also a flap procedure that uses your skin from the backside! I DEFINATELY have enough skin there! The scar is hardly visable too. Look it up online! One of the girls from my group is having it done.

I had the transplanted skin and it worked out beautifully for me so far, I have lots of room to "expand" and can't wait to have my new breast. It should be done by October/November.

As for waiting, there was a few dark weeks after chemo treatments that I wished I had waited. NOW, that I am only 32 days away from chemo being OVER, I am glad I am underway already with the reconstruction. But today is a GOOD day!

I hope you do what is right for you in your heart and for your body. Its such a difficult decision among a slew of decisions that we must make when we start breast cancer treatment. We are with you in spirit....you will do whats best for you

 

[DeeCeeSW]

There is also a flap procedure that uses your skin from the backside! I DEFINATELY have enough skin there! The scar is hardly visable too. Look it up online! One of the girls from my group is having it done.

But today is a GOOD day!

The gluteal flap surgery is very specialized (I believe only a handful of docs actually do it), so it would probably require that I travel out-of-state to get it done. Not only that, it is on average, a 12-hour procedure!!! I have PLENTY on my butt (in fact, I sometimes refer to it as "the shelf," LOL), but I'm not willing to go through all that.


I'm so happy that today is a good day for you!!!! And I am so happy to hear that you are almost done with chemo.

Dawn

 

[lookingforward]

The gluteal flap surgery is very specialized (I believe only a handful of docs actually do it), so it would probably require that I travel out-of-state to get it done. Not only that, it is on average, a 12-hour procedure!!! I have PLENTY on my butt (in fact, I sometimes refer to it as "the shelf," LOL), but I'm not willing to go through all that.


I'm so happy that today is a good day for you!!!! And I am so happy to hear that you are almost done with chemo.

Dawn

It is a good day. My daughter's god-mother and one of my oldest friends called from Arizona and she's coming to visit mid-may. She is taking my daughter and I to the Wilderness Lodge for a long weekend! I am so happy because I was dying for a disney fix but did not want to go with the entire family as I knew it would be too exhausting. This way, she can take my daughter swimming, etc. and I can relax. We'll do the parks for a few hours a day and then just relax, have dinner, etc. We are booking concierge too, so it will be a real treat! I'll be one month past chemo and just starting radiation. My port will be GONE! YAHOOOOOOOOOOOOOOOOOOOO.