Bilateral mastectomy may 13, 2015

dumbass

hi. I had both removed. I was offered diep flap reconstruction only , I don't feel it is a viable option. I was content with being flat chested but I came out of surgery having a pigeon chest. I am unable to lift my arms and feel like an invalid. I am devastated. Suicidal even. How do I get over this.

MizMimi

Hello there,

I'm sorry you are in a bad way right now. I haven't started my treatment yet, but just in reading your post I wonder if you have discussed physical therapy with your doctors? That may help you get your range of motion back!

Please stay here and reach out to the wonderful ladies here and I'm sure you will get others giving you their opinions as well!

You can also post in the emotions thread, too. Don't let the darkness get to your soul! There are people out there who want to help you.. reach out as you have done here.. it's a great first step.

When was your surgery? (Edit to say nevermind.. I just now saw your date)

Why don't you want the diep? Why is that the only option they gave you?

Hugs!!

MizMimi

Here is the other thread I mentioned: https://community.breastcancer.org/forum/102

The title to your post here gives no indication that you are in an emotional crisis.

Edit to say I can't post a hyperlink for some reason, but this is the title to the forum...

Forum: Relationships, Emotional Crises, Anxiety, and Depression

Lily55

Hi Dumbass - I don´t believe that title suits you one bit but hear you are feeling really down on yourself. I had a unilateral mastectomy in 2012, was refused reconstruction, BUT have to tell you that exercising by stretching your arm up even when it hurts like hell under your armpit really works. I have almost total movement and did have early on as I was determined not to lose anything more than I had, despite having 14 lymph nodes removed.......its actually the node removal that limits movement more than mastectomy. Did they remove some of your nodes too? I found that far more physically painful than losing a breast............

In your case you need to exercise one side at a time. Take painkillers first say one hour before and then do the crawling up the wall or door frame with your fingers to as high as you can go, several times a day....................even now 3 years on if I stop stretching my arm and shoulder it all tightens up...............

I won´t go in to all my details but I had a massive infection after a fat transfer and was left with a lot of scar tissue and a concave pigeon type chest especially over the scar, but despite having an infection that nearly killed me I have had two fat transfers since and that sunken look and pigeon bulges in other places has completely gone. I am still flat on one side but that is because of the inhumane system in the country I live in.............so there IS hope, you will not be pigeon chested.......you have swelling still......hang in there and do all you can do right now which is make sure you exercise both arms and shoulders..............

It IS horrible, my heart goes out to you, big hugs................

Maureen1

I am so sorry you are feeling so overwhelmed and hopeless…I know it's hard to believe but many of us faced similar frustrations in the early weeks and months after diagnosis and surgery…it takes time for our bodies to heal and to start treatment so we know what we are facing. I hope you have people around you who can give you the support and comfort that you need during your recovery…rest, take care of yourself, you don't have to hurry your choices…know that if you are not satisfied with your surgical outcome you can go back for plastics or reconstruction at a later time, right now that most important thing is to recover…I went to a physical therapist during my recovery and that really helped me…she taught me exercises, massage techniques, and stretches to help me keep my shoulder and chest muscles working well so I don't have any issues with stiffness or swelling. Hang in there…we're here for you…(((Hugs))) Maureen

ksusan

I had a double in February. I couldn't even lift my arms to shoulder level. HOWEVER, gentle range of motion stretches got me back a huge range after only a week of practice, and now I have my whole range back.

Please tell your medical office that you need to see a social worker.

dumbass

hi lily55, I did have nodes removed. Everything is tight, really spasm, muscle cramp tight. I used to work out with weights before. I just want to swing my arms like crazy and rip the whole thing apart. My chest, rib cage is pigeoned, they tried to warn me but of course i don't listen. I would have opted out of surgery if I had excepted this and also known my arms would not be normal. My new normal of being bald, skinny, breastless and unless armed was not my plan even my worst case plan. I have done what doctors asked, no activities past hands in pockets. I realize I have done this to myself and have no one but myself to blame. I have done this in blind faith in hope all will work out. I guess I was wrong.

coraleliz

You're not that far out from surgery, but "no activities except hands in the pockets" seems extreme. Try to get referred to physical therapy. It took awhile but my chest did eventually flatten out gradually. I didn't have any guidance, but found I could use my arms if I kept my elbows at my sides. My biceps were my 1st experiment with weights(lighter) following my BMX. I also walked a lot. I went to the gym, tried lower body & cardio stuff that didn't interest me before. None of the things I tried may my pain/discomfort worse. I just couldn't stay home! There are no sedentary things I like to do! You're a month out, you need to get moving, call your surgeon tomorrow. If your surgeon won't give you a referral, try your PCP or oncologist. Hope this helps.

farmerlucy

Hello - I don't think the name suits you either. It is so early and you have been through so much. You're not always gonna feel like you do now. I promise. Right now focus on a day, hour, or even minute at a time. How have you been sleeping? Do you have anything to help w that? Step by step. That is all you can do right now. Do you have a PCP? They can help point you in the right direction. Meds were made for times like these. A mastectomy is a brutal operation and recovery takes time. I don't understand about a pigeon chest either but I imagine you still have swelling and healing to do. Hang in there.

Nomatterwhat

I really don't like your name, you are being very harsh on yourself.  Slow down, take a breath and please post your diagnosis so we can help.  Who tried to warn you about what?  What was the date of your surgery?  I don't know what a pigeon chest is, so you will have to explain that one.  I had a BMX in August and couldn't move my arms for the first day, but exercise helps.  My BS gave me some exercises before I left the hospital and I did them every morning, noon and night.  I wanted so bad to lift my arms, get dressed by myself and especially go back to work.  In time, I was able to do those things and more.

I have been through chemo, lost my hair and it came back (go check out "hair, hair & hair" site), we look fabulous!!!!!  I have been through radiation and yes I have a permanent sunburn and now I am on Femara for the next 5 years.  I wasn't skinny to begin with and now I am even less skinny, but, I am still alive and kicking, and that makes my family very happy.  I am not completely flat and am in the process of looking for a BS to do the revision for me, but that will be at least another 6 months, which is at least 1 1/2 years after my initial surgery and if I decide to wait longer, my chest will be there when I am ready to have another surgery.  In the meantime, I wear my prosthetics to work and anytime I go out in public. You don't have to hurry into anything and don't let the doctor talk you into anything you don't want to do.  Find a good support group as many of us have and keep us informed.   

littleblueflowers

Oh honey,

First, thank you for sharing your feelings and reaching out for help here. We all get it. Now for the encouragement: it does get better. I had a bmx 3 months ago, and am going through ACT chemo, and I am back to jogging and doing yoga. My body is healing from this disease and surviving treatment. Please ask your MO about a therapist and a physical therapist. Don't give up. We are all here for you no matter what!

dumbass

how do you manage to get out with out breast s. With out hair and now no breast so I am horrified at my looks. And my body is a mess, saggy and baggy.

farmerlucy

One thing that could help is the "Look Good Feel Better" course sponsored by the American Cancer Society. Go to their website to find info about an upcoming class in your area. They address issues like wigs, wraps, colors best suited for you and you are taught how to apply makeup. They give you an awesome makeup bag filled w cool cosmetics. You will meet w other ladies in your area going through the same thing. You are not alone. Maybe ask the mods to help you change your user name because only a smart person would reach out for help as you are doing. Sending you a gentle hug

marylark

Hi Beautiful One ( take that as your name and the promise of your future),

This is my first post. I was diagnosed in April Stage 3 Grade 3. Doing weekly chemo first. I am bald and swollen. I work as a music director, singer and conductor in a church, so have a very public job in front of hundreds of people. I was afraid for folks to see me at first. My experience is that people see YOU not your present circumstances. People love you for who you are and are pulling for you.

I still have to face my double mastectomy so I can't speak to that, but be good to yourself. Those who know you see you with love and the strangers you encounter are too preoccupied with their own circumstances to even notice.

I hope you are able to find a social worker or counselor to help you process it all. It helps to talk things through.

dumbass

Hi nomatterwhat. Surgery was may 13. Pigeon chest is sternum sticks out front is like a boat hull. Lovely. I could move fairly easily after surgery but to much fluid in drains so told not to do anything. I was in great shape before all chemo and this. I just got drains out. I got a little back in shape after chemo just for this. While should I do anything because there isn't anything I can do. I have no confidence to do or go anywhere. I do not want to wear ugly bra with fakes but must because of chest. Just feeling like frankenfreak.

Nomatterwhat

Okay, you need to stop feeling sorry for yourself.  I don't have the pigeon chest, but I do have the bumpy, lumpy chest and body to match.  You need to look ahead at what treatments you have left and keep telling yourself that you can and will do this.  I felt like a "frankenfreak" also, but kept telling myself that I am doing this to save my life and for my family.  The mirror was off limits, and as far as my husband seeing my chest, that too, was off limits.  I went to the LGFB class and now wear make up and I do wear a pretty bra with fakes, as you call them.  I wear dangly earrings and more jewelry than ever before.  I wear my foobs to work and most of the time when I go out in public.  Nobody, and I mean nobody can tell that my chest is fake or flat.  However, my give away is my hair and it is getting to the point, people just think it is naturally curly.  You can do this and from the mouth of my husband, "suck it up and straighten out your mindset, because you are the only one that can take care of yourself and do whatever you think is right". 

Lily55

okI refuse to join in with you bullying yourself, to me you are Dahlia, a flower who stands up tall. It sounds like you still have a lot of fluid around the area and that is why you were told to move less but you do need to move your arms more. You definitely need a physical therapist now as you WILL get your arm movement back. But you need to start asap as the earlier you do it, despite the horrid jangling pain, the easier it will be. I recall it hurt so much sometimes I felt sick.

I remember bursting in to tears when even opening a kitchen cupboard hurt like hell but today I had a CT scan and had to put both my arms over my head and I could! And that was after radiotherapy to which gave me a lot of problems. i hated the idea of prosthetics and used soft sport socks in an Ah bra.......you truly will not stay as you are now and when you have healed from this surgery enough fat transfer can fill out hollows and is fairly painless.

Dont worry about getting the right clothes,just use whatever is most comfortable for you so that you can go for a little walk or have a coffee locally, just very little steps, you need kindness not the rage you have turned on yourself, mastectomy is an emotionally brutal surgery.........it takes a lot of time to come to terms with.......i send you a gentle hu

dumbass

I'll just suck it up buttercup. I have tried to wear makeup til eyebrows and lashes fell out, even attempTed false eyelashes. I have run/walked through all chemo and now, exception was when I was too sick from chemo. Even started running again this morning, in we hours of the morning. Tried to get boobs today for a bit of normalness. Of course not in stock. So. Oh well suck it up buttercup. Got it. I will be myself soon except that my arms won't work much, my chest can part the sea, if God decides to bless me with toenails, fingernails and hair. Thank you all for your offers of concern. Dumbass

And another thing, I guess I do have boobs, they are in my armpits. Haha. And I don't know what revision is.

ksusan

If you stand up straight and proud, most people don't notice the no-breasts look. I'm neither reconstructing nor wearing prostheses and if I have a scarf or hat on, nobody notices. For that matter, nobody really notices my chemo buzz cut if I wear big earrings, either. If you don't feel proud, fake it, though you have good reason to feel proud.

BarredOwl

How are you doing? There can be times of disappointment and despair, especially in the first couple of months after surgery. Despite the pics on breastfree.org and elsewhere, I was not able to really envision how I ended up looking either after bilateral mastectomy (extremely flat, to almost convex on the sides). Not to mention I had giant cords (axillary cording) like ropes on both sides in my armpits, that took almost year to mostly go away. I think the change is a lot to get used to.

For me also, the impact on my arms upset me greatly, because I was not expecting such severe problems. I could not do "climb the wall" exercises because I couldn't lift my arms even to 90 degrees to get on the wall! I started by grabbing the back of a chair, which was the best I could do. I ended up with a frozen shoulder on one side.

On an office visit, I asked about my limited range of motion, and got a prescription for physical therapy (that was about 20 days post-surgery), which was helpful. After a few months of that, I bought a DVD (and muddled my way through the best I could (The Lebed Method Focus on Healing (Amazon has it)). I still do the exercises from the DVD daily. It was a slow process, but things are better now.

If one doesn't use the arm, there can be loss of range of motion and strength (surprisingly fast), which is probably what happened when you were advised to limit activity. Please contact your healthcare providers about your limited range of motion and loss of strength, and ask when you can resume simple arm exercises (and ask for instructions) or if physical therapy is indicated now (probably). Remember to start very slowly.

For other flat friends, visit the "Living without Reconstruction After a Mastectomy" forum for ideas about possible bras or camisoles or going flat.

Be gentle to yourself.

BarredOwl

Lily55

Anyone know what has happened to "Dumbass" she has deleted her posts? Keep thinking about her