Totally confused about reconstruction

Hi Jac1745,

I had a modified radical mastectomy (no skin sparing) in 2015.  I live daily with the physical stress of removed lymph nodes from surgery  and damaged lymph nodes from radiation.  I get lymphatic massages about 1X every 10 day b/c lyphedema, so self lymphatic massages and excerising (daily) because lymphadema is uncomfortable.  The radiated parts get uncomfortable while I'm getting sunlight while driving, walking...

If I had known then, what I know now, I would have made different decisions.  I would have kept my breast skin, lymph nodes, and skipped radiation of my lymphnodes.  The doctors presented the treatments (chemo, surgery, and radiation) as medically necessary.  (I wasn't given a choice b/c of IBC (stage III as well).  I was too weak from chemo to consider anything but to follow through with the doctors' plan.  They are the doctors, so they should know best.  Right?  Hindsight, the doctors are presenting the best way they know to get rid of the current cancer, but they do not live with the physical dibilitating consequences of the treatments.  (I love my doctors, but they are not living in my body.)  I would have insisted that the sentiniel lymph node be checked for cancer, had a thermograph, requested a circulating tumor cell count...  Basically, I would have liked to know as much as possible of what was left of the cancer before actually doing treatments.  

After all that conventional treatment, I'm still dealing with checking for tumors returning anywhere else in my body along with the physical pains of lymphedema and sensitive skin to sun.  All this greatly brings down my quality of life.  Currently, I'm going to a wellness doctor to get my body balanced after all that treatment and trying to detoxify my body with nutrition and foot baths.  I also read about Shirley Williams (She was stage 4, and did not undergo convential treatment of cancer to have her stage 4 cancer gone.  I wish I had know about her before going through with treatment.)  

My cancer case is different from yours in which I'm  BRCA negative.  I'm sorry that I do not have advice for you, but I thought I'd share from my personal experiece, which includes regrets.    

Decisions are not easy.

jac1745:   Everyone one of us knows how difficult it is to be making these decisions.  It is so overwhelming.

You're 37,I was 58 at the time of my mastectomy.   I interviewed several oncologists, radiologists, and plastic surgeons.   I made an appointment with the University of Washington, and an amazing thing they did, is they scheduled 4 hours of appointmentss with all of these medical professionals all in one day, and also just talked with support women who volunteered in the department.   They recorded the interviews, and handed me the recorded CD when I left for the day.    I knew I was getting state-of-the-art advice.   I had heard about the D.I.E.P flap transfer before going (my local woman surgeon who did my lumpectomy told me I'd be elligible if I choose a mastectomy).   So in my meetings at UDUB (University), we discussed this.    I knew then that D.I.E.P. was the route I choose to go.   At that time, there were less than a dozen medical centers in the USA that were trained to do D.I.E.P., it was the newest technology for moving a 'flap' and rebuilding a 'breast'.

After my mastectomy and lab report showing no sign of cancer in any part of the breast they removed (except the earlier lumpectomy), and because my lymp nodes had been clear, I questioned why I'd need chemo or radiology.  And I choose neither.   My reconstruction processes/surgery took many months, I thought I'd never see the end of the tunnel.   I followed reconstruction with a breast lift on my other boob (yeah, reconstruction was perky, other was saggy) and follow up fat insertion to fill out a hollow (plastic surgeons won't quit until they think it's perfect, kind of like an artist).  

In my case, radiologists admited radiology on the chest wall would cause tissues to scar, and I was told it would make the D.I.E.P flap transfer more difficult to reattach.  I asked one radiologist for material to study, he lent me a copy of his radiology medical 'bible', a 3 inch volume which I read for about 3 weeks before returning.  It was very informative and didn't convince me radiation it would improve my outcomes; in fact, there was a risk later in life that the earlier radiation could lead to a later reaccurance of cancer.   I could not justify radiation.

I like my 'new breast', although it's not really a breast.   I have no feeling in that breast tissue (you wouldn't with implants either).  For a few years, I felt a lot of sensitivity surrounding the breast where the original me had nerve endinga.  I also, still, am sensitive on the chest wall underneath the reconstructed breast.  (Also felt this when expanders were in.)   There is one chest muscle that goes over the D.I.E.P. flap, I can flex this muscle and my boob moves (funny!).   But I do feel like this 'boob' is all me.

I have met women who have had implants and were very happy with them too.    Sometimes economics has a factor in your decisions... just find out everything you can and good luck on your decision!

Wish I knew

Hello

You are very young. I was 47. Here's what I wish I knew. 

First, I was too thin to do flap reconstruction, but if I had to give advice to someone deciding between the two - since my nieghbor had flap and she was fine with it, if I had to decide now and could get flap, I would.

Here are some things to consider: 

Are you an active person - exercise-wise? Implants are very uncomfortable if you are a runner. I wish I didn't have them because I am a very active person.

Second, how large do you want to go? I went too large. I used to be an A/B and I went to a full B. I look better as far as how my clothes drape on my body, but the uncomfortableness of it is not worth it to me. When my implants expire, I will get smaller ones. The plastic surgeons seem to want to put the largest ones in that they can even when you tell them not to.

Third, when you have a mastectomy and you have no fat in your breast and put an implant in, the implant is usually freezing cold. It feels like an icepack. That is my personal experience. I don't know if others have the same experience.

Also, I had radiation after my implant was in since I had cancer again 10 months after my first diagnosis, so this shrunk the skin on that side. So if you get implants, have them done after radiation. If your skin gets too tight, they will have to grow skin or on your back.

If you do decide on implants, the ones that feel like gummy bears are the best.

Susan Love's Breast Cancer Book is a great resource.

I am on the fence too!

Thank you so much for asking this question as I opted to have a double skin sparing mastectomy with no reconstruction. Both my doctors really suggested for me to wait on the reconstruction to allow alot of healing time. I'm a stage 3a so I had extensive treatments. I did 4 rounds of A/C every three weeks and taxol once a week after the initial one was too strong for me , so they broke it up into weekly doses, much better! Anyways, now that I am a year out I am revisiting the reconstruction world and frankly a bit frantic about it.  I originally thought of the DIEP Flap because A. I wanted something my body would be more likely to ajust to as in my own tissue (in a perfect world it makes sense) and I also could thoroughly enjoy my tummy after 4 kids to be put back in place (lol.) I also pondered the thought of weight ratio against my chest wall since I had 48 rounds of radiation their and on my sternum.  I still have a little sensitivity on my left nipple area if my nipple was still there to the touch. Just a light soreness there still. I wonder if it would enhance that soreness to have a breast added there.

Kiki2016 said:

Decisions-Decisions

just went to the plastic surgeon and surgeon yesterday.  I'll be doing double mastectomy with reconstruction. Expanders then implants. Don't have enough abdominal fat to create two breasts and also concern that post radiation if there were changes there wasn't any more fat to use. Hope I am making the right decision with implants.  I am very active and love boot camp, body pump, light running.  Hoping I will get back to "normal" over time.  I never would have elected to get implants were it not for cancer.  have always been satisfied with what I had (small b).  

I did the expanders and swapped to implants

and am also an active person.  I have no trouble with running or doing weights, yoga or anything.  I don't wear a sports bra now at all though since they are "self supporting".  You will get back to your normal in time.  It won't be overnight but it will definitely happen.

Clementine

How to decide

It's a really difficult decision.  Quite honestly I considered not doing any reconstruction but was concerned about my emotional reaction.  I talked to many breast cancer survivors about their experience.  Ultimately I decided I wanted to have something "there" vs nothing.  I was also worried about my husbands reaction although quite honestly it's my body and I need to be comfortable with what I'll have when all my treatment is through.