Mastectomy questions....

micheleu · 04-24-2008, 03:27 PM

Ok, my US and mammo came out ok. (My opposite nipple lite up on my PET scan) My onc. said we need to still bx the nipple to make sure it's not pre-cancer or Paget's disease. Of course if that's positive i'll have bilateral mast. The other question is, I have a 2-5 times more chance of getting a new breast cancer because i've had cancer. Do i take both off now?? I'm almost 5 years out, and no one thought i would be here. He said today that it is a miracle and i'm in the minority. I'm wondering if i do mast. what kind to have and what are my choices?? I can't have the skin sparing gummy bears i wanted!!! Does anyone hear have the gummy bears with a simple mast? (gummy bears are a new implant that won't leak if it happened to break. Saw them on Oprah) Did alot of you take the abdominal muscle? (well, would I get a free tummy tuck?) Lot's of decisions i know.

Becky · 04-24-2008, 04:25 PM

Statistics on getting a brand new breast cancer (not a recurrence of the current one) depend on whether you had ductal or lobular bc.

For ductual, you have an overall risk of 15% but you have a 1% risk per year for the first 10 yrs.

For lobular, you have an overall risk of about 25% and the overall for the first 10 years is 2%+ per year (lobular which is about 15% of all bc does have some predisposition within the lobes whereas ductual can be much more "one of those things that happen). These statistics include women who are BRCA 1 & 2 positive (and probably didn't know it at the time so their risk for a new bc is greater). Also, these stats are (in general) from even prechemo let alone preherceptin (which should help reduce dcis - bc precursor, as most dcis starts as Her2+ but loses that in favor of other growth factors - most notably ER and PR).

Lastly, I know (like me), that you removed your ovaries while premenopausal. That act alone reduces your chances of getting (another bc) by 68% (no joke).

I think alot too as we have said to each other before because I had cancer on the right AND a low grade dcis on the left (so am I done now?) and had lumpectomies on both and have my breasts. Plus the dcis being low grade, ER+/PR+/Her2 negative and being only 3mm with a 2cm wide, clean margin - I did not have radiation on that side and worry about that (and had a cyst on that side 6 months ago).

However, don't beat yourself up over this. If the biopsy comes out fine (and it probably will), take your time to decide if bilateral is what to do and investigate all reconstruction options (or not).

You are a warrior woman and give hope to all of us and get the word about us out there to everyone. You are a real heroine.

Ruth · 04-24-2008, 05:31 PM

Yeah Michele!!! Good news. I feel like we are similar in the fact that I am fast approaching 5 years too. I had my own scare a couple of months ago when my surgeon and radiologist decided that they would like a baseline MRI of my breasts since I have such dense tissue on my remaining breast. They went ahead and viewed my reconstructed breast even though I didn't have skin saving surgery nor any remaining lymphnodes but that breast caused the problems. They saw something and made me come back the next day to do it again. I spent soooooo long in that machine! I have a tiny lump on my scarline that popped up after the last redo on the implant. It is OK (reverse suture or something like that?) but boy I hate, hate, hate tests. On top of it, I had a bad reaction to the contrast after the second time. I think it was due to having it done one day after the next. I feel that we have gotten to a great point in survivorship (almost 5 years), we knew our odds on the get go and then to have something pop up now really makes you sit back and think. I pray for the best for you and hope that it is just a false reading.

Becky, you always know so much and give us all such great information. I have a question please. None of my doctors even mentioned taking my ovaries out....I still have them. I was 36 when diagnosed and have my period now every 28 days like clockwork. Would it be because of my ER/PR status being negative? Now you have me wondering!

Thank you!

Ruth

micheleu · 04-24-2008, 05:34 PM

thanks Becky, i know now that it's been so long, giving my breasts up is a big decision. but on the other hand i don't want to have my head in the sand, and think it won't happen to me again

Becky · 04-24-2008, 05:54 PM

Dear Ruth

I found out the stats on oophorectomy by chance. My case is very different for a couple of reasons. These include that I am ER+ but PR negative. Therefore, tamoxifen would probably do little good for me but an AI would be better (but you have to be postmenopausal to take one). Another was that my paternal grandmother died from ovarian cancer. When I had a baseline ultrasound of the reproductive tract post bc treatment, there were 2 "objects" on my left ovary that they could not identify (they were unovulated follicles) and I was nearing age 47 so menopause was nearing (although I did get my menses back 7 months postchemo).

My reasons were plentiful and I did not even know how it benefits not developing bc (but that kind of seems intuitive). Also, my dcis was both ER+ and PR+ (and not Her2), unlike the invasive cancer.

So for me, it ended up being part of my treatment plan in a way whereas for you (and you were younger when diagnosed and are younger still), and having negative hormone receptors, it would take thought and several different consultations (onc, gyn and others) before turning off the spigot (so to speak).

Ruth · 04-24-2008, 06:22 PM

Thank you Becky ~ I think you are an angel sent here to help us muddle through this great world of information.

Ruth

Margerie · 04-24-2008, 06:23 PM

Hi Michelle,

Love your new photo

The mastectomy/reconstruction question....that is a difficult one. I had bilateral DIEP reconstruction after I finished chemo. DIEP is like TRAM, but completely muscle-sparing. I don't feel like I gave up my breasts at all. OK I have some weird scars and not much sensation.

I had many reasons to prophylactically reconstruct the "other" breast. Mainly because I had very dense breasts and they missed my original tumor for 2 years. Anyway, of course it is major surgey and nothing to take lightly, but my new ones are fabulous- like I was 19 again LOL.

I highly recommend this new website that discusses all kinds of reconstruction
http://www.breastreconstruction.org/

They have lots of info and patient testimonials.

Good luck with your decision and I am just a pm away if want anymore of my opinions/experiences

micheleu · 04-25-2008, 04:05 PM

Margerie,
when you had the diep, do they still do a tummy tuck and use the fat from your stomach just leave the muscle?? Do the scars on the breasts show when wearing a low blouse? did you just tattoo nipples on then?

Ruth,
as far as the ovary removal. I am er/pr negative. I wanted them out so i didn't have worry about recurrence there. I was done having kids, so why not. We being er/pr neg. could still have a horome pos. recurrence. Are you done with your kids??

Ruth · 04-26-2008, 03:29 PM

Hi Michele ~ Oh yes, done with kids....see photo LOL!!!! We have our hands full with the 5 however I guess I was thinking that the loss of hormones would affect other personal areas of my life and was worried about that too. I'll talk to gyno who I see in two weeks. Also, I will see Onc. in August for regular 6 month check.

Thank you for responding!

Ruth

Margerie · 04-27-2008, 09:36 AM

Michelle,

Yes, in Diep procedures they dissect out the abdominal blood vessels they need for your new breasts instead of taking a small chunk of muscle from your abdomen for the new blood supply. Scarring is minimal on the breast if it is immediate reconstruction- which I assume yours would be? Check out the "immediate" section of the link I have below.

I did have nipple reconstruction and areola tattoo. Even up close, they are pretty natural looking. I am very happy with the results! You do end up with an impressive abdominal scar. Mine ended up way above my panty line (it varies from person to person) and I hated it- so I am having a delicate henna-looking tattoo done across it. It is very pretty and you don't notice the scar at all- a distraction strategy. And I used to think plastic surgery and tattoos for just for a mid-life crisis- LOL.

It may not be easy to find a qualified microsurgeon who also performs breast reconstruction. I had to travel 4 hours to a big city (SF), but it was worth it. Here is a link to my surgeon's website. On the home page there is a star-like diagram and if you look close- this is the star flap technique they can use to create a nipple.

http://www.microsurgery.net/index.html

Best of luck to you on your decision. I assumed there would be strong medical opinion on whether or not I should have both sides done. In other words- tell me what to do people! I had to sniff out the facts and decide for myself what would work for me. And all my docs (gen sx, onc, rad onc) backed me up 100%.

So how far along are you on your risk vs. benefit graph? LOL And why is there no manual?

micheleu · 04-27-2008, 12:19 PM

What is the risk vs. benefit graph? And how can i see it? That would be helpful. Margerie, so you just had one breast removed? the henna tatoo sounds awsome!!

Margerie · 04-27-2008, 02:28 PM

LOL- sorry I ramble Michelle. Warning: another long rambler here!

I meant you have to make your own chart for yourself to help make your decision:

*what is your predicted risk of getting another tumor in either breast (my personal thoughts on this were: but really, been burned by statistics before)
*will tests always reveal a reoccurence
* how risky is the surgery for you ( a question for your docs)
*can you afford the down time- no running with scissors- LOL or hauling laundry, groceries etc. for a good 6 weeks and no driving for awhile
*what are your reconstruction options and what are the possible complications
*will insurance cover my reconstruction, etc.

vs.
*will the surgery give you the esthetic results you want
* the peace of mind you want
* some people elect no reconstruction at all and are happy with their decision.

So if the benefits outweigh the risks- then you know you are on to something.

I also asked questions about being able to detect a recurrence with my kind of reconstruction (a few opinions here, but the general opinion was the recon is not going to hinder finding most recurrences, heaven forbid) and what kind of scans/screening post-reconstruction I would need- answer was no more mammograms!

I had my tumor-laden breast removed before chemo and then I had both sides reconstructed a few months after I finished chemo. So one side was a prophylactic mastectomy with immediate reconstruction, the other side was considered "delayed" reconstruction. So I did get both sides done. I think with DIEP it is a one time deal- either one or both breasts, but you can't go back back later to do the other one with Diep.

And thanks for the tattoo compliment! The gal that tattooed my areolas uses medical grade ink (no carbon, no black) and the colors are just beautiful. I asked her to go out of her box (she is not in a tatto parlor-LOL) to do my abdominal tattoo. She was game and I almost have the entire branch done. After I get the flowers and little leaves done, maybe I will post a photo. The cherry blossom branch has some significance for me:

Chinese Cherry Blossom
For the Chinese the cherry blossom is a very significant symbol of power. Typically it represent a feminine beauty and sexuality and often holds an idea of power or feminine dominance. Within the language of herbs and herbal lore of the Chinese the cherry blossom is often the symbol of love.
Japanese Cherry Blossom
For the Japanese the cherry blossom holds very different meaning. The cherry blossom is a very delicate flower that blooms for a very short time. For the Japanese this represents the transience of life. The Japanese have long held strong to the Buddhist belief of the transitory nature of life and it is very noble to not get too attached to a particular outcome or not become emotional during difficult situations because it will all pass in time.

Soccermom · 04-27-2008, 03:02 PM

Hi Michelle,
I also had DIEP. Margerie is correct regarding "you cant go back and have another DIEP", however you can go back and have a GAP (gluteus) flap. I had delayed recon using both my abdomen and my upper gluteus (DIEP & GAP) to give me the volumne I wanted. I just knew I wanted to be close to my original size (D). I am very happy with my tummy also...great perk...we deserve it!

heres a great site to learn more...
http://www.breastcenter.com/welcome/

also one of the Docs from the Center answers questions re any type of recon on this site...

http://members.boardhost.com/plastic...tml?1209333348

The reason I waited so long (3 years) was because I wanted to be in good shape prior to surgery AND psychologically I needed to be fairly confident I might actually be around for long enough to justify having these surgeries.(I know ,,,sounds wierd!,LOL)

Best wishes to you on the decision making process .let me know if you have more questions!
Marcia