Decision - Radiation or skin-sparing MX. Difficult choice

LucyLane

Hi all,

I have had 3 surgeries to obtain clean margins in my left breast.  Now I have a "ski-slope" effect (I'm a B size cup).  I've always been self-conscious about my breast size.  Now I have to choose between having radiation (which will forever alter my ability to reconstruct & enhance the BC breast), or unilateral skin-nipple sparing masectomy.  My husband went with me to my BS to get questions answered regarding the procedure (TE's & implants). I wanted to be sure he understood the equation that I am dealing with, and why it has been an incredibly difficult decision for me to make.

 I have friends that say it's better to have "radiated" breast, even though altered by lumpectomy, as mine is, then to have a breast you can't feel.  I have to decide pretty quickly, but I can tell you that I'm making myself sick trying to decide.  I just know that there is no turning back from either decision.  And I also know that there is no "perfect" solution.  It just stinks to have BC.  ~Lucy

dlb823

Hi, Lucy ~ I know just where you are, and it's so difficult.  I had such a tough time wrapping my head around the need for a mast.  But what got me there was seeing photos of Diep (natural) reconstruction, which is what I ended up opting for.  

But you're right about not sacrificing breast feeling if you don't have to.  So another thing you might look into is finding a plastic surgeon who is comfortable operating on radiated skin.  As it turned out, I needed radiation, and my PS (UCLA) had me delay the Stage II part of my recon (for asymmetry; I had a unilateral mx) until several months after I was done with rads.  And he did a beautiful job.  Not all PSs are experienced enough with it to work on radiated skin, but some do.  So I'd suggest maybe getting a 2nd and even a 3rd PS opinion before deciding, because you may have been given limitations based on your PS's preferences and capabilities -- not necessarily everything that's out there.      Deanna 

dlb823

Ooops!  Duplicate post!

dlb823

Ditto... due to BCO technical issues!

lago

Lucy there are PS that will work with radiated skin. I know my PS does. I thought for sure even with a BMX I would have radiation but didn't. (Won't get into that here). Of course that doesn't mean it will be success. If the radiated skin doesn't work then they can take skin from other places and still have a successful implant. You can discuss this with your PS if you haven't already.

Being numb isn't  horrible but I will admit I do miss my right nipple. Left one not so much. It's a rough decision but there are options if you decide to go with rads/lump.

LucyLane

Thank you SO much for your encouragement.  I've been talking to a plastic surgeon (Oregon) all along this journey, and he basically told me that if I have radiation, I should wait at least a year before considering reconstruction.  I could definately tell that he wasn't overly enthused about performing reconstruction on radiated tissue, but I also know that he has done it before (according to the nurse that I spoke with).  I've also been checking out this new "Brava" system.

My concern about radiation is this:

1) risk of damage to heart muscles (might not show until years later)

2) risk of damage to rib

3) risk of burning lung (I already have asthma)

Also radiation itself can cause cancer...albeit 20 years down the line (ok, so when I'm 67..I'm worrying about that...hmmm)

Are you taking Tamoxifen?

Lucy

LucyLane

Deanna,

Thank you so much.  This is what's so frustrating in my searches for information.  I literally searched on-line for surgeon's who were willing to work with radiated skin, and it was pretty clear to me after hours of searching, that the consensus was that PS's do NOT want to work with this challenge.

That left me feeling pretty depressed, and either consigned to this fate, or trying to figure out to get enough time off of work to have the skin\nipple sparing masectomy, and work through the issues of not being able to feel my nipple anymore.  It's really hard to imagine what it would be like for me (and my husband).  Would he (or I) be interesting in fondling a breast I can't feel?  The hardest thing about this, is not being able to go forward in time, experience this, and know you made a mistake or the right decision.  In the grand scheme of things, living my life as well and as long as possible is my objective...

  I'm a Business Systems Analyst by occupation..so I tend to "think things to death".  This is both a blessing and a curse (depending on the context). 

I'm also not a stranger to having to deal with the medical community, and make hard health decisions.  I was diagnosed with MS in 1993, and the first five years (1991-1996) were a nightmare. I was scared to death, by both the symptoms that I was experiencing, and also the prospect of having to take immuno-modifying injections for the rest of my life.  I tried several different varieties of that, but in the end, stopped all of it because I couldn't handle feeling like I had the flu, all the time.  MS has been stable for years, though I did have an appt. with my neuro last week, because I had heard that there has been some connection to estrogen\hormones & MS, and in fact, estrogen therapy is\has been studied at UCLA for it's positive benefits on rebuilding nerve tissue damage.  Ironic...that I'm now being told I should take Tamoxifen.  Neuro said he's never seen any bad effects on MS for either menopause or Tamoxifen, but he also didn't seem to be aware of the studies that I had found (http://www.thisisms.com/article-print-36.html) (http://www.sciencedaily.com/releases/2007/08/070827174327.htm)

I don't know what to believe anymore! 

Lucy

lago

Lucy all cancer treatment can cause cancer but it is very rare. I would be more concerned/scared of getting rid of the cancer you have now. You might not have 20 years if it returns and sets up came in one of your organs.

I was so scared of treatment messing me up for life… now that it is done I realize that having cancer is scarier than all these maybe's. I didn't have radiation but I know many that have. The do everything they can to miss the heart/lung bones. To be honest I rather have any of those issues then cancer. They are all treatable. Risk of another cancer caused by is extremely low.

I am taking anastrozole (generic arimidex). My onc felt at my age (49 at the time) and peri menopausal and family history of menopause at age 51/53 (mom sister) that my periods were not coming back. I do get tested though. The first 3 months I had no SE and the minor night flashes I had from chemo are gone. I might just be starting to get a little stiffness in my fingers and toes in the morning but it goes away. I was scared to death of taking this drug. I'm finding out that many women don't have SE or minor SE from them. Same with Tamoxifen. My theory is you can try the drug and if it's that horrible you can always quit. You don't know till you try.

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All PS don't like to work with radiated skin. It was the first thing my PS asked me when I came back to see him after chemo. (I still had not met with the Rad onc the last time I saw him). He was very pleased. My neighbor who was diagnosed right after me and has the same team did get radiation. PS is still doing implants.

Your PS waiting a year is a good idea. The longer you wait the better your chances are of not having issues. I know it seems like a long time but it will be worth the wait if you decide to go with implants.

Good luck.

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Also remember one study does not make if fact. Sounds like they still don't have definitive answers on this. Print out the study/articles and show it to your doctor. See what he/she has to say about that.

pitanga

Lucy, I am chiming in late to say I had a mastectomy for a recurrence nine years after radiation to that breat (post-lumpectomy). I kept both skin AND nipple and had immediate reconstruction with a Becker implant. I did get some necrosis after surgery in part of the nipple but the plastic surgeon snipped it off, stitched me back up and all has been well since then-- 2 years ago. I am not 100% happy with the look of the foob but too worn out from so much surgery to bother messing with it again. Best of luck to you, Lisa

Editing to add a PS--I bet the reason they are reluctant to work on radiated skin is that they fear lawsuits. I live in Brazil and that is where I had my surgery. There are fewer lawsuits here and excellent plastic surgeons. If your insurance will pay for surgery outside the country maybe consider it. 

NSWTD

If it were me, I would opt for skin/nipple sparing mast.  I had unimast, skin sparing, could not save nipple, an SIEA flap (similar to DIEP) and I am very, very happy with the results.  Very natural looking and feeling.  I would be concerned about radiation.  TO me the worst part of the mast/recon is the surgery.  But, in the end all seems more natural than other options I had, which were only the type of recon breast I could or could not have.  

 Best of luck to you

redirish1

I am new to this site, and I saw that you are having mixed feelings for recon and radiation. I have a story to tell you about radiation and waiting. I too had radiation which cooked my outer skin and left a scar on my right lung. I waited for on yr. before getting my recon, and the plastic surgeon said he would work with my skin and do lazer treatments on my radiated breast during the several recons I had. Fast forward 3 yrs. and I still have a skin that looks like spider veins on my right breast. At first I was freaked out because I love wearing low cut tank tops (living in FL)  but now I show my spider veins and scars with pride. Anyone who asks me what happened I tell them about my Breast Cancer. It was wonderful for all the kind people I have met over the yrs. I also lost my nipple to infection so I only have one headlite. LOL! Whatever you decide just remember it is great just to be alive.

LucyLane

I wanted to post a follow-up to  this email thread, for those that are researching this topic.  I know I combed and combed for information on the subject on having implant\reconstruction after lumpectomy\radiation, and so for that reason...I have come back to this, to provide my experience.

 I had 6 weeks of radiation in Sept\2011.  I was able to get the implants that I wanted (though I had to wait, and the surgeon I mention in the thread, DID perform my surgery, on June 19th.  I am 5 weeks post-up now, and so far, I love the result.  I had the newer style Allergan 410 (Gummy bear) anatomical (tear-drop shaped) implants.  Though the left side is a bit higher than the right side (it was before RADS, and became slightly more so after)...they look great, and I couldn't be happier.  That being said, I have been told it takes as long as 9 months to see the actual end result.

 Lucy Lane

mlsnow1964

Glad to hear all is well with you Lucy. I am post 2 wks double mastectomy (skin sparing). I am also 21 year Hodgkins survivor. I had radiation for the Hodgkins, my PS was a little concerned but everything has been fine. right side he had to snip some skin after some necrosis. I am having some swelling but over all I think things are going well, I can tolerate what pain I have. My PS did not want to use the tear drop implants. He suggested a certain kind and I went with his opinion. I am not real impressed with the size, I am smaller than my original size but I can live with it as long as I am cancer free. We will see what the end result looks like.

Good luck to all on this site and any persons having to deal with cancer.