Would really like some help...

[linda47]

Hi - new to this - just looking for some information - I have to undergo bi-lateral mastectomy with tissue expanders on January 23rd...was wondering if anyone who has had this done would give me some tips on what would have made it easier for you after the surgery.  What would you have done different?  What would you have by your bedside?  How long were you down for? 

[Chemosabe]

Linda,

Welcome to the site! But I sure wish you didn't have to be here...no one wants to join this sorority, membership is just thrust upon you. You are going to get a boatload of welcomes and they will be much better than mine as I only occasionaly post.

But here is my 10 cents worth (better make that 39 cents to deal with the new postage increase!): I didn't have a bi-lateral, but the one I did have I had a tissue expander put in at the time of my mastectomy. You will need lots of pillows of varying shapes and sizes, as you will have to experiment a bit in finding the right combination to make yourself comfortable to sleep.

The one thing I wish I had had was a holder for all the drainage tubes I had! They make them and sell them now....little pouches with velcro that you can wear around your waist. I know some other women who are handy at sewing have put a kangaroo pocket on their shirts for this. Either way, you will want to rig up something for the shower (having them drop and dangle is NOT a pleasant experience).

Shirts that button up the front are a must, too. Luckily they make all kinds of nice, comfy PJ sets (you can always resort to buying mens!)

 

Linda, I am sure you have already been through a lot. Just remember that you can make it through this and we will be there for you. In fact, we often crowd onto this thing called the PCE express and are there in your hospital in spirit.

 

Hugs,

Erin

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[socrnana]

Hello Linda! As Erin said, we are sorry that you are having to go thru this but you have come to a great site for support and information.

You asked who to have by your bedside. I would suggest someone that you are very comfortable with. Whether that be your spouse, parent, sibling or best friend. Someone that will allow you to sleep and not expect you to carry on a conversation. Someone that will make sure that you get what you need in the way of help. I didn't have a bilateral nor did I have any type of reconstruction, but I do remember that I was in some pain right after the surgery. I had a wonderful nurse that kept those pain shots coming right on schedule. I found that once I was home, it was much easier for me to sleep in my recliner w/ lots of pillows to prop me up. I did need some help for the first few days. Remember that you won't be able to lift your hands over your head for awhile, so, as Erin said, be sure and get tops that button down the front. Also, you might ask a friend or your beautician to help you get your hair washed and dried.

Why not tell us something about yourself. We have members all over the US and perhaps one of us lives near you. We have been known to come for support if close enough.

Hugs...Deb

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[linda47]

Thank you so much for your responses so far...they are exactly what I am looking for!  Just looking for someone who has been here; done that.  And knows what would have made it better!  No sense in re-inventing the wheel, so to speak. 

I was asked to tell you a little about myself - and so I will. I am 47 (soon to be 48) and living in Calgary, Alberta.  I have had 'woman' problems all my life.  Had a hysterectomy at age 36 - cysts. Question for you: if I was an "IT" before, what will that make me NOW???  Just kidding.  I will deal with this too.  I should mention that I am in a new relationship, and although he says he will be supportive, I still don't know exactly what that means.

Thank you for your tips - I will be contacting the home care places about those drain holders.  I do have a lazy boy chair in my room, so that will help out.  I have lots of pillows.  This is all good.  What else would anyone suggest?  I have two kids who will be in school all day, so I have to be self-sufficient during that time.  Will I be able to manage meals? (I have lots prepared in advance.)  How long before you went back to work?  Drive?  Did you use oils or lotions on the scars? How long do the drains stay in?  As you can tell, I've had very little information from the doctor - he just says, "we'll see how you do."

 

 

[socrnana]

Linda: First of all, if the dr I had chosen told me "we'll see how you do" and didn't take the time to explain everything to me, I would be looking for a different physician. As each of us knows, when you hear the words from the surgeon or onco the first time, you don't remember 90% of what is said. You should be able to get answers to these questions from your physician. As I said, I didn't have a bilateral but I was able to drive in about 3 weeks. I learned that if I tried to do too much, my body would let me know and I would be exhausted. Do you have any family that is near who could come and stay w/ you the first week or so. At least until you are feeling better? Help get your kids up and fed and off to school? Don't be afraid to ask for help. What is your diagnosis? Will they be checking your lymph nodes?

I love your attitude. That is half of the battle. Laughter is a great healer. Let's see. Hmmmm...you said that after your hyster you were an "it". Hmmmmm...maybe now you will be an "itless" (little play on words) lol If you new bf says that he will be supportive, give him a chance. He may be just the support that you need.

Come back and post any question that you have. No matter how silly it seems. I can promise you that there will be at least one of us, if not more, that have had the very same question.

Hugs..Deb

[linda47]

Thanks Deb.
You made me giggle...I appreciate that~
And I WILL be 'ittless'!!! I love it! Can I market that????
Let me see - lost my uterus, was an 'it'; lost my boobs, was 'ittless'!!!

(I hope no one on here takes that the wrong way; just trying to get through with humor.)

I am 'pre-cancerous'...doing this to prevent anything. Apparently I am high risk and have too many iffy lumps. Am in too much pain all the time and have been for too many years. Just take the darn things! I don't need them anymore!

Thanks for the advice about bf. Hope he sticks around! He's a keeper. I do have a good support system in my friends and I know they would help me out in a minute; just have trouble taking the help. I would like to do what I can myself; hence the questions on what would make things easier.

[socrnana]

Linda: Rofl!! I think that we both have the same type of "warped sense of humor"! You wouldn't believe some of the names my friends came up with for me. Anyway, I think that they were friends. :)

Please ask for help. That is one of the main problems that we have...asking for and accepting help. We all think that we are Superwoman and can do it all. Please allow yourself the luxury of staying in the recliner or in bed for a few days if you want to (note the word WANT and not NEED..although it may be needed). You won't do your kids, your bf or yourself any good if you don't allow yourself time to heal. Maybe your friends could work out a schedule where they could come in and help get the meals on the table and clean up. My friends did that for me and not only was it a surprise but I found that I really needed it.

Hugs...Deb

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[Frayda]

Hi Linda! Welcome to our little part of cyberspace! Sorry you have to be here, but as you can see, we are here to help! You have already gotten some great advise. I had a bilateral mastectomy with expanders 5 1/2 years ago. The drains stay in anywhere between one to two weeks, depending on when the amount of fluid gets down to less than 30 cc per day (that number may be different today) One side on me dried up faster than the other but I think they were both ready to come out about day 10. Depending on your job, you should try to stay home as long as you can (at least three weeks).  This is major surgery and your body will have sustained quite an insult, so you will need plenty of rest to give your body a chance to heal. I thought I could handle going back a few hours a day after a week.  After three weeks, I thought I was going to crash! I took another full week off just to rest and then came back again part time for another three weeks before trying full time.  I had a hard time sleeping on my back. I did experience muscle spasms in my chest during the expansion period. My dr. gave me a prescription for a muscle relaxer which also helped me sleep. They will show you stretching exercises to do to increase your range of motion in your arms. Make sure you do them! You will start out easy at first , then increase slowly until you can get your arms above your head. Good luck! If you have any specific questions, I'd be happy to help! Frayda

[linda47]

Appreciate the input Frayda. How are things going for you now? Everything back to normal? Tell me you're one of the success stories! My girlfriend had this same surgery that I am having; she had to go back into surgery a week after the mastectomy to have the tissue expander re-adjusted. Then six months in an expander 'poked' through the skin, so she was in the hospital to have that repaired...where she picked up an infection that had them removing the whole breast AGAIN. Sent her home for 6 months to heal before putting the expander in again. Now she is 'equal' and will go in in February to have the implants put in. No wonder I'm frightened and concerned. I just hope I have better luck than she does! That, or I hope my doctor has a great night sleep and is in a great mood when he does me!!

[Frayda]

I am happy to say that I am fine now! That's not to say that there weren't a few bumps along the way. I did have to have one implant replaced twice; first due to constricture after just a few months and then a year later due to leakage. It's been three years since the last replacement and everything looks good. As a matter of fact, I am going for my routine follow-up with my breast surgeon tomorrow. Be sure you and your plastic surgeon are on the same page concerning your expectation of what size you want to be in the end. My idea of smaller and his were not the same. When I was getting expanded I kept saying "enough!" and he kept saying "just a little more!" He explained he had to overfill the expanders so there would be a natural fold with the final implants. He spoke in terms of cc and I spoke cup size; not the same! I ended up 450 cc, a large c cup; I wanted to be full b cup! After all is said and done, they do look great in clothes and I am in proportion. Most of us who have had reconstruction has needed some adjustments here and there. It's part of the game plan. I hope everything goes smoothly with yours! Frayda

[Chemosabe]

You ladies crack me up! You know the phrase for those bands who only had one hit on the radio....well, my DH now calls me the "One Tit Wonder." And now, with my impending total hyster, I, too am scared "itless" about it ;-)

I never had any problems with my expander or implant. I did have to tell my plastic surgeon to slow down on the filling of the expander (why is it that they always want to max you up?). The first time he injected the saline, DH was watching it expand at an exponential rate and make a comment about Baywatch babes. I told him to forget it! Size B is fine with me.....

The one surprizing thing that I didn't count on was not being able to lay flat. I was doing some kinda yoga pose and realized that I couldn't possibly lay face down as I was rolling around on top of this water ball....they don't compress like real ones!

On asking for help....that is the one thing I really wish I had done more of. Many offered to help and I should have taken them up on those offers!

Something else I remembered that you will need: a good sports bra. Find one that is moderately stretchy and zips open in the front if you can. You will want some soft but firm support to hold those babies secure while you are going through expansion and after surgery (usually the hospital gives you this scary, industrial velcro bra which will work temporarily).

Will be thinking of you!

Erin

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[linda47]

Thanks everyone, for the input. It's exactly what I am looking for. Keep them coming. Frayda, glad you are ok...I figure I will go to a C cup, but only because that's what I am now.
Erin - thanks for the hints...about the bra...guess you have to wait for a while to see what size you are, or do sports bras come size-less??
I think what will be hard for me is to re-learn how to sleep. Generally, if I am not in EXACTLY the right position (mostly on tummy with one knee up), I DON'T sleep, no matter what. Guess that will have to change!

[jdenomme]

Welcome Linda, as you have already found out, these women are fabulous, and a wealth of information. You can look up our histories in the roll call at the top of the page.

I am looking into having mastectomies done, but I haven't done alot of research. So although I have alot of questions, here's my major one - I still have bothbreasts. What are the advantages of having expanders vs having implants done during the same surgery as the mastectomy?

chantry

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There are no wrong turnings, only paths we did not know we were meant to take - Guy Gavriel Kay

[linda47]

Hello Chantry (what a wonderful name!)
From all the research I did on this, there are really only 4 surgeries;you fall under one of the four. With the surgery I am having, a bi-lateral mastectomy, they must expand the skin so there is room for an implant. Because they are taking the whole breast, there is not enough skin left otherwise. They might have been able to do the 'tummytuck' procedure, if I had not just lost 26 pounds. Also if I was only having one breast removed.
So look into the options, talk to the doctor - he will probably have a surgery he prefers or recommends.
Good luck - we all need it!
Linda

[babyseeester]

Hi Linda and, unfortunately, welcome.  As you already know, these women are fabulous.  Just my 2-cents worth here.  There is a skin sparing mastectomy that can be done and implants placed at the same time.  I'm not sure how many plastic surgeons do this procedure, though.  I am about to undergo a tram flap reconstruction next week.  I opted for this because I don't feel comfortable about the safety of implants.