I also need help, advice....

Kimber

Encouragement, discouragement...whatever.  After just having yet another surgical biopsy (that makes 6 + lumpectomy) all of a sudden I got a period, or vaginal bleeding whichever it may be.  Concerned about tamox, I called my oncologist and she told me to call my gyno and get an exam.  Then we talked about all I had been through and all the trauma to my breasts.  My lumpectomy scar is big - the chunk taken out was big, and before one of my surgical biopsies on my "good" side while trying to get the wire placed, I was mammogrammed 60 times because they could not get the clip on the film - it was close to my chest wall.  3 hours of constant compression!!!!   Anyway, her words to me were "peace of mind is worth a million bucks...every time you go through this it is a trauma to your breast, your body and your mind."  Soooo, I love my surgeon but am thinking about another opinion and talking to a plastic surgeon.  I have spoken to many of you about PBM, but want to know the deep down nitty gritty bad stuff.  What do I expect?    I mean, it's like an amputation! I'm not sure I can handle seeing myself that way... I have said all along I do not want cancer to make this decision for me.  With a mother, sister, and aunt all having bc, and my sister at 46, I just feel like it is only a matter of time.  Why not do it while I am young and healthy??  I feel like I am on a fence and just need a nudge to fall to the preventative side.  Sounds very silly when you put it in writing and think about it as strictly preventative.  SO many women here have done it and have been happy.  I am so sick of monitoring and the stress of biopsies before every holiday season.....

Sorry once again to vent....this is a big decision for me.  How long will I be laid up?  How long will I need help with my kids?  I RUN my household - my husband can't even stand for me to have a cold.  How long does the process take???

Thanks sisters, I am in a weird place right now....

Kimber 

kreativek

Hi Kimber:

You've pretty much listed out the reasons I got my PBM in your email.  The surgery is really not as bad as you would think.  Of course, everyone heals differently and at a different pace.  I live alone with a small dog and did fine. I had neighbors bringing meals to me and walking the dog, but no one stayed in my home with me. I took six weeks off work because I wanted to feel 100% when I went back.  I went to evening traffic school exactly 2 weeks after my surgery. I felt fine but I was really constipated due to the pain relievers!  I probably could have gone back to work after 4 weeks.

My opinion.....after what you've been through.....you'd do great.  The nitty gritty bad stuff....you leave the hospital with drains and have them for about a week.  They are rather gross and you have to empty them.  You have to sleep propped up on your back at first.  You lose sensation and your chest feels "numb" on the surface. Some of this loss of feeling is permanent.  You can't use your arms very much at first.  I already mentioned you get constipated from pain drugs.  If you have expanders at first, your "breasts" will look deflated, lumpy and bruised.  Then when they start filling them up with saline, they get really hard and shaped funny. The permanent implants are very comfortable and soft though.  Some women are not happy with their reconstruction results and some women have complications.  I do believe getting a really good and experienced surgeon can cut down the risk of this greatly though.

The good stuff:  most women do not find it to be that painful of a surgery.  The pain is usually easily controlled with pain killers.  You may be able to keep your nipples - ask about a "nipple sparing" mastectomy.  You may be able to change your size - go bigger or smaller.  You may be able to get "perkier" breasts if you want them.  You'll never have a mammogram or mammogram guided biopsy again.  (I just get yearly MRI's now).  You'll greatly decrease your risk of breast cancer; probably down to 2-3%.  Most importantly...you'll get piece of mind.

 I'd be happy to answer any other questions as well:  1ocforce.kris@sbcglobal.net 

LISAMG

Hi Kimber,

I can so relate to your post, being high risk myself. Have you or anyone affected by BC in your family had genetic counseling/testing? This could be the deal breaker for you in knowing your real high risk status.

Facing a PBM is huge and contemplating it myself for almost 4yrs. now. You have already been thru so much. I suggest you get a copy of Kathy Stilego's Breast Reconstruction Guide that explains every type of reconstruction. So many choices, skin sparing vs. nipple sparing, implants/expanders vs. flap procedures. My BEST advice is to seek a few different opinions, gather all the facts and remember surgeons will only recommend what they do and NOT necessarily what you want!! You will find breast surgeons telling you its not safe to keep nipples, but only you can decide what is best for YOU. There will be surgeons who tell you immediate implants are complicated and to use expanders first, not true. I have seen all of this thru my consults and the learning experience has been immeasurable. Keep posting and asking questions. Best wishes.

Kimber

Hi Lisa,  where do I get that guide?  My breast surgeon doesn't like direct to implant because he says implants don't look good without any breast tissue over them? I am not a candidate for a flap because apparently I do not have enough to give?  I'm not married to my nipples, they aren't that great.... I don't know....I am going to seek other opinions.  ANY input at all is much much appreciated!   ~Kimber

LISAMG

Kimber,

You can purchase the book at Amazon or any large bookstore. Its a must read. Remember, as I mentioned surgeons will only tell you what to do based on their experiences. Many women have done direct implants, avoiding the expansion process and a second surgery. Only an experienced micro vascular plastic surgeon will recommend flaps. Many women are candidates, despite what you have been told, even if you do not have enough tummy fat. Good luck!

Texas357

Kimber, I made the decision to have a prophylactic mastectomy in August and had a super easy time of it. Also, I'm 5'5" and 115 pounds -- no extra tissue anywhere so I can relate to the lack of options. My experience:

1. The mastectomy laid me up for 24 hours. I was feeling fine by the evening of the surgery. There are lifting restrictions for a couple of weeks but I wasn't sapped for energy or very sore. I'll admit that frame of mind is important. I went into this feeling very positive and upbeat, and woke up joking with the nurses.

2. I had a tissue expander implanted beneath the muscle and had a high profile silicone breast implant done a few weeks ago. The new breast looks and feels fantastic. I can't wait to get the nipple surgery and tattoos so that it looks more normal. But it feels so real that I tend to forget it's not my natural breast.

A few notes about why I had it done:

1. When I had my cancerous breast removed,  I developed lymphedema which limits my use of my left arm. I did not want to risk that happening to my right arm as well.

2. I didn't want to go through chemo and radiation again.

3. When they removed my so-called healthy breast they discovered atypical hyperlasia which can be a precursor to cancer. I was so happy I made the decision!

Delilahbear

Kimber,

I know your delima. I had 6 biopsies and 3 ductal excisions (3 wire guided biopsies and 2 ductal excisions on my right breast and 1 wire guided biopsy on my left all at the same time in July of this year). I had intraductal papillomas that started leaking left last year and right this year. After having the left breast areola cut open 3 times, I said enough is enough and my husband and I discussed PBM and then had two counseling sessions with the surgeon. She agreed with our decision to go ahead with PBM and now 3 months out and getting my implants replaced with larger saline ones in mid Dec. along with the nipple reconstruction, I am glad that I went ahead and had the procedure performed.  It hasn't been the piece of cake my mind told me it would be, but the peace of mind is certainly worth it. I could not endure any more mammos, ultrasounds and MRIs with their uncertainty every few months. My MRI came back bi-rad category 4 suspicious and the pathology was extremely diffuse papillomatosis.This raised my risk as well as being overweight and never having had children. Hope this helps.

Kimber

Thanks Ladies for all your stories and information.  Keep them coming.  I meet with a new surgeon next Friday.  I am hopeful and coming to peace with my decision.  I will keep you posted.

Love to all,

Kimber 

Stonebrook108

Kimber,

By having some many biospies in reality your already started having a mastectomy. That's what I didn't want to happen to me so I had my PBM with direct impants. I and never regreted my decision. I had LCIS and the stress of all the testing every 6 mons. for the rest of my life would have been too much for me. Not to mention they want you to take Tamox. I feel I took the easy way out for me. It was the worst decision to make but it is doable. It's a personnel choice. Also, It's not the BS who decides what reconstructioln you will have it's the PS. Remember I was the one who sent you the list of questions for the PS.

The surgery was half as bad as I expected. Really no pain expect for the drains. I'm also sending you a PM.

Good luck

Joanie207

Kimber,

I am riding that same fence right now. A year ago I was diagnosed with LCIS, ALH, ADH and have spent the last year talking with plastic surgeons, breast surgeons and oncologists. Last week I met with the breast surgeon who will do the PBM - IF I choose to do it. I don't know what will tilt me in either direction. 

On the side of doing the PBM is the fact that I won't have to have a sentinel node biopsy which will eliminate the risk of lymphodema. I won't have to worry about what is growing in my breasts. I won't have to have any more consults with bs and ps. I won't have to have chemo or radiation.

On the negative side is disfigurement, pain and numbness. I want a DIEP, but wonder if I really have enough 'material' to make decent breasts. This might sound very superficial, but I don't want to look like a pre-teen girl. Plus, the surgery is 10-12 hours long. Plus there are additional drains for the stomach area.

The last surgeon I met with gave me the name of a website for those choosing not to do reconstruction - breastfree.org (I think). That would be the simplest/safest route which has some appeal, but I have two young daughters and would like to feel whole when I take them swimming or to the gym. I am fearful that with an implant I may have to face additional surgeries down the road - that's the reason I am choosing the DIEP. 

Thank you for starting this thread. I also hope to hear from more 'experienced' women who can help me to make this decision as well.  I have no more consults - the team is in place - now I have to decide to do it or not and if I do, when. I truly admire the women who are able to know with certainty what they want and get it done. I feel like I am in the plane ready to skydive, but need that kick to jump out.

Ghanshyam

Hellooooooooooo,

                             This is because you have most of support and i also get it and going with.

925 sterling silver

Kimber

I am meeting with a plastic surgeon on Tues that does skin sparing mastectomies.  I have met with 3 breast surgeons and the last one I met with said he would rather I consult a PS because he is worried about blood flow to the nipples because I have so many scars already.  I don't think he heard a word I said.  First of all, I couldn't care less about saving nipples.  My reasons for doing it seemed to go unnoticed, and in the same breath gave me my lifetime risk assessment that he put into a model and it came back as 91.88% !!!!!  HELLO?  I will pursue this until I find the right person/team.  Joanie you are lucky you already have your team in place and that you have their support.

leaf

Oh gad, Kimber.  You got a winner-not.  I know surgeons have a reputation for having poor bedside manners, but .....(sigh). He must have been using the  infamous Hall calculator that hasn't been compared to the LCIS populations .

You are so  smart for continuing your search until you find  the right person/team. I have heard horror stories about using the surgeon that is closest because they didn't want to commute an extra hour.      My best wishes to you!

Kimber

He used the Tyrer-Cusick model that takes LCIS into consideration.  Thank you for your best wishes!

PNWgal

Hi Kimber,

I went through the entire procedure, bilateral mastectomies, silicone implants, nipple reconstruction and tattoes 2 years ago.  I was Stage I, but my family history was strong, with my mom, 1 sister, my aunt, my grandmother, and then me all diagnosed.  My grandmother lived to be 94, and after mastectomy 50 years previous she never had another problem.  My mom had lumpectomy, as did my aunt, and my sister had mastectomy on one side. I told my doctor take them off.  I could not live with the fear and I've never regretted the decision.  The surprising thing to all was they found cancer in both breasts of different kinds, invasive ductal and lobular carcinoma in situ. My doctor told me I did the right thing.  The MRI had only shown cancer in one breast. The most difficult thing for me was getting fills in my tissue expanders, but my PS told me we could do less each time and that helped.  My strength is finally back in my arms and chest this year as I found I could do all the things I wanted in my garden again, which was huge to me. I am also feeling more myself.  Don't underestimate that this is a huge surgery.  I needed help the first week in particular since I had drains on both sides, but after that it got better and better.  I've a very independent person and it is hard for me to ask for help, but you will need help at least the first week. Peace of mind is everything.  Good luck to you! 

Kimber

My "team" is in place.  My BS supports me 100%.  I feel lighter than air...like a huge weight has left me....

Ghanshyam

Oh,

       Really you have but you know i love many other things and i also like your confidence .

 sitemap 2

Kimber

Moderators,

Ghanshyam appears to be someone trying to sell something??? 

Joanie207

Kimber,

Congratulations for finding your "team". I know exactly what it feels like to have that feeling of relief. Now I am working on making arrangements for childcare, hotels, etc. Being 4+ hours away from the hospital and wanting to stay close to the hospital for the first week after release makes things a bit complicated. BUT I have a wonderful sister-in-law who will watch my 7 and 4 year olds and will do whatever we need her to do. We are truly blessed. Kimber, please keep me posted as we are moving down the same path at the same time, which is very helpful to me.

Kimber

Joanie, please let me know what your date is and I will let you know.  You are lucky to have such a great sister in law.  Are you doing DEIP?  Let's stay in touch, OK?  PM me with your email address.

Kimber 

Lynn3

Kimber, I had a DIEP last May. I can fill you in on whatever questions you may have as far as I know.

Lynn3

Dear All, I just had a DIEP last May (on our anniversary), spent 5 days in hospital, stayed in a lift chair for a long time...actually rather comfy. I had to mess with the drains but had help with them and they were out soon enough. Also had help showering especially with the drains. A CNA who wanted to earn extra money came to help. I am sooooo glad I did that. I am soooo glad I was able to do that. It has worked for me. Let me know if you need anymore experience/advice than you are already getting.