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Tina70
Posts: 2
Joined: Mar 2013

i am new here i have just gone through a double mastectomy last thursday morning and i am having trouble looking at my scars or even allowing my husband to touch there 

SIROD's picture
SIROD
Posts: 2119
Joined: Jun 2010

Dear Tina,

Welcome to a discussion board that you never wanted to join. It is very hard to look at yourself the first time.  Even I am certain more to allow someone to touch you with your unfamiliar body.  In due time you will adjust to it all.  I remember someone telling me that there will be a day I won't even think about it.  She was right.  One day i forgot my prosthesis and when I got in the car, I kept saying, "something is missing" but couldn't think of what it was.  Then I looked down and noticed the empty place.  I laaughed, got out of the car and went in and put it on.  I remember my friend and knew she had been correct.  I had finally arrived to that day.  It was a long way down the road before I got there.  Lots of miles....

Take a peek now and then and before you know it, you will be having a good look.  It's raw, so it will be hard to get use to but as it heals it will get easier.

Everyone who has had a mastectomy has gone through it so you are in good company.  Go easy on yourelf and tell your husband one thing at a time.  Just cuddle with him for now.

Best to you and your husband as you travel this journey,

Doris

Josie21
Posts: 338
Joined: Nov 2012

Dear Tina,

I had my bilateral mastectomy over 4 years ago and I can remember being where you are now.  It's overwhelming and you need to give yourself time to heal physically and emotionally.  You have been through a lot and it is so fresh.  At first I did not want to look and then I realized that all I really wanted was to be healthy again.  Those scars meant that I was giving myself a chance to be well.  I know it's hard to believe, but the scars don't bother me at all any more.  I did the reconstruction, but some woman don't.  You can feel whole again either way.  Give yourself some time and let your husband help you through it.  It will be OK.

Hugs,

Ginny

CypressCynthia's picture
CypressCynthia
Posts: 3914
Joined: Oct 2009

Give yourself time.  And, in the meantime, hug and talk with your husband so he knows that you still love him.  Believe it or not, he may be feeling as insecure as you.

I was just 33 when I went through my first mastectomy.  My second followed some years later.  I am still married to my wonderful husband and he has never made me feel less than a woman.  However, I felt just like you at first.  I remember bawling in front of the mirror the first time I looked.

As others have said, give it some time.  You will always miss your original breasts, but it gets better with time and, for me, reconstruction helped.  Big (((hugs))).

blazintrails's picture
blazintrails
Posts: 52
Joined: Feb 2013

I completely understand what you are going through.  Its been exactly 2 weeks for my double mastectomy with reconstuction started.  It was hard for me to see myself for the first time.  I cried like a little baby and I still do but its getting better because I focus on the finish line.

My husband had to help me shower and I had a major break down.  He literally came into the shower with me and held me.   This HELPED me.  Yes I was embarassed but love took that away.

 

Again what helped me is the strength and support of my husband.  Don't hold thing in and talk to your husband about your feelings.

 

 

Tina70
Posts: 2
Joined: Mar 2013

i have been dealing with i can only call them phantom feelings i feel like my breast itches but there is nothing scratch i have tried scratching elsewhere but it doesn't help i'm at a lost at what to do any suggestions i don't see my dr again until the 14th should i call him on monday and talk to him or just ignore it which i've been trying to do.

my other question is i was before my double mastectomy a 50 DD and i am not having reconstruction and i sure as hell don't want to go back to that size again the dr left me with little mounds i could get away with a training bra lol but i can't even go to the bathroom by myself because when i pull my pants down i try to fall over i hope when i see him he gives me the ok for some prosthetics to balance me out some 

Mariannemm's picture
Mariannemm
Posts: 136
Joined: Apr 2010

It has been three years since my double mastectomy and I still have that itch that I can't scratch from time to time.  I don't know if that will ever go away.  When I have that happen I do something to get my mind off the itch. After I had my mastectomy I began recontruction but it didn't go well and I had to go back in for another surgery to take the expanders out.  So I posponded reconstruction and went with prosthetics.  If I remember right Dr had me wait a few weeks almost a month before I could wear them.  With summertime approaching make sure you get the pads to put inbetween your skin and the prosthetic.  It really helps with the sweat.  Helped keep me cool too.  Part of the balance issue might be from surgery. Before I had BC I could wear a training bra and I had problems with balance after surgery. :-) I still have a hard time looking at my scars and letting my husband see me naked.  I have keloids pretty badly and it is so hard to see myself in the mirror.  I am getting better about it but it is still really hard for me.  Right now I am using positive quotes to help me gain some confidence.  I am 48 yrs old and this isn't how I saw myself at this age, 48 is young, now I feel old.  I have always been thin, healthy and happy. But I remind myself that I am alive and that is what matters. Gentle hugs to you!

Marianne

CypressCynthia's picture
CypressCynthia
Posts: 3914
Joined: Oct 2009

I had the same exact itchy thing going on after my mastectomies.  A nurse friend recommended taking a scratchy wash cloth and rubbing briskly on my abdomen below the surgery sites.  Strange, but it seemed to really help.

I had the opposite problem as I was nearly an A before surgery.  I asked for a B cup, but received a full C.  Even after 26 years, I sometimes think I am flat chested...lol.

My recommendation for when he ok's prosthetic: go to specialized store.  There are soft foam prosthetics that they give you right after surgery, then silicone-type ones for later.  Also, you need a swimming prosthetic if you go swimming (foam will float up and silicone will sink).  I found that out the hard way. Wink

SIROD's picture
SIROD
Posts: 2119
Joined: Jun 2010

Hi Tina,

Phantom pain feels real and remember it so well.  I once actually scratch my prosthesis and felt relief.  I wondered if I had gone crazy.  Your brain sends signals out to find out where the missing part might be.  I would say silently, "brain, take this message, "it's gone, get over it" every time the pain began.  I assumed my brain was taking the message but it was years before I could say it actually was gone.

I was badly burned once. Twenty-six (26) years to the day, nearly to the hour, I watched a flammable halloween costume run by me.   A foolish young man used his lighter to ignite another's halloween costume.  He soon was rolling around on the floor of our gym before someone threw a raincoat (part of a another costume on him).  That night, I kept rubbing my leg with the scar tissue and the area hurt.  I knew that it was impossible to feel pain 26 years after the event.   The pain I felt that night was real.  Messages being sent out by my brain is all I could think about.   I tried to stop thinking about the day's event and played a movie and the pain went away.

My solution might help you to send a message to your brain, I don't know.

When the time is right, see a good fitter to help find a good prosthesis.  They come in all weights, maybe one that can balance and can be a little lighter would work.

Best with the pain,

Doris

 

Gabe N Abby Mom's picture
Gabe N Abby Mom
Posts: 2415
Joined: Sep 2010

Hi Tina,  I'm so sorry you had reason to find us.  This is a great place to vent, ask questions, share bothersome stuff, share joy, and make friends. 

My bilateral, no reconstruction, was Jan 2011.  I've also had a local recurrence which didn't heal well, so I have a hole on the left side of my chest.  My husband helped me with the drains after surgery.  Other than that he doesn't really touch or look at my chest.  With time you and your husband will find what works for the two of you.  If you want him to look or touch, let him know.  This is uncharted territory for both of you...talking will help you get through this new territory. 

I remember at time when I looked in the mirror expecting to feel sad and missing what I had lost.  Instead, I felt very strong and powerful.  It was like 'look what I've been through...look what I've survived..I am that strong woman everyone talks about.'  I hope you see that when you look in the mirror.

 

As for the itching, I don't really feel that.  But I do sometimes feel phantom breasts....usually I feel cold, sometimes I feel erect tight nipples.  My doc said that is fairly common.

Some unsolicited advice...do the exercises you were given faithfully.  It will help you get your range of motion back.  If you have issues ask to see a physical therapist who is experienced with mastectomy patients, waiting can make any issues worse.   Also, if your doc hasn't talked with you about lymphedema (LE)...ask about it.  You should know what to watch for and what to avoid.  Hopefully you never have to deal with it.  If it does show up, ask to see a certified LE specialist.

I hope you are already feeling stronger.

Hugs,

Linda

 

disneyfan2008
Posts: 5275
Joined: Oct 2010

I had a lumpectomy 2008 and it took me WEEKS...4-5 to LOOk-I just had another one 3 mths ago (same side) I have looked a few times.

 

IT"S take time.......and I am not good with any medical issues / I have had so many surgeries in my life time-I am worst person...wooozy belly does me in...thank goodness for my daughter. She takes care of me, when I can't handle it.

 

Densie

VickiSam's picture
VickiSam
Posts: 8220
Joined: Aug 2009

I've been there -- take your time   ...  You will get there when your mind, body and soul are ready. 

 

Here are a few tips on helping you get thru the next couple of weeks:

 

take pain medication when necessary -- not the time to play the hero, and be anti-meds

Multiple pillows in various, sizes help with sleeping on your back -- many Sister in PINK find that sleeping on a recliner help them the first couple of weeks.

Please have cups, saucers, plates at arm level - as well as re-arranging your fridge for more commonly used items at arm levels. Tide/Downy small container sizes - also at arm level. Reaching up and grabbing heavy items -- will tear your stitches, as well as hurt your arms. Muscles and tissue in breast, as well as arm areas will be cut,moved and sewn back together.

I tried to take a bath ..but hence could not pull myself out of the our spa tub, no muscles or strength in my arms after bilateral mastectomy.. It took my husband, and daughter some time to pull me out of the tub == without hurting me. Not a pretty time, or sight to say the least. So I opted to shower ...My husband removed our shower head, and replaced it with a flex hose type so I could shower maneuvering the flex hose from waist down, as well as place shower water under my arms.

Lastly, please make sure you do your exercises as prescribed by Plastic Surgeon, and Physical Therapist.

Strength, Courage, Hope and Speedy recovery.

Vicki Sam

 

susie09's picture
susie09
Posts: 2933
Joined: Jul 2009

Wanting to say Hi to  you Tina and Welcome to our board.  I had a lumpectomy, so, I can't begin to understand your feelings.  It looks like other sisters here that have had a mastectomy have given you some really good advice.

Hugs, Susie

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