Advice with three weeks to go until PBM

seltzer

I have been reading the discussions for months and am finally coming up on my bilateral mastectomy.  Have decided against reconstruction and now realize I am very confused about the post surgical situation since I haven't paid close attention to those talking about reconstruction and those not. I am going to skip the SNBs and hope for the best.  Surgeon says there are some lymphnodes in your breasts so those will be enough for now.

Here are some questions:

How soon can I have some kind of prosthetic to wear?  What inexpensive alternatives are there and how would I size them (I am a 36DD but willing to go very small, just want something so as not to scare my kids!)

Where do the drains go and do they make it impossible to wear even softies?

Can you bend over post mastectomy or is that a problem (if you don't have Tissue Expanders)?

What is the height I need to put things?

Have read the preop prep lists.  I feel like I keep slipping into imagining this as a C-section recovery (I've had 3), but it is different since your abdomen isn't involved right? 

Raye99

Hi there,

To obtain a proper fit, you need to wait for the swelling to go down before you are fitted for a mastectomy bra and prostheses. Your breast surgeon will write you a prescription for these items. The fitter will allow you to try on different forms and you can then decide which ones you like best and feel comfortable with. As for inexpensive forms/alternatives, I will defer this question to Barbara, our resident expert.

You will most likely have two drains, one on each side below where your breasts were. They are not bad at all, just a bit cumbersome at times. I would pin mine to my pj top or if I had company, tuck them into a fanny pack. Mine stayed in for about 10 days each time (I had mast of left breast first and then the following year, prophylactic mast of right breast).

Yes, you should have no trouble bending over after your mastectomies.

As for height, probably shoulder level, although if you are not having any lymph nodes taken out (did I understand that correctly?), your underarms will not be as sore as if you did have them removed.

No abdomen is involved unless you have reconstruction at the same time as your masts (i.e., TRAM, DIEP).

Hope this helps and best wishes to you! If you have any other questions, please just let us know.

Raye

Raye99

Oh, I need to add: with my mast where the bs took the lymph nodes, I had two drains; with my prophylactic mast, I only had one drain. Just a quick clarification. Thanks.

Erica3681

seltzer,

I wish you luck with your upcoming bilateral mastectomy. With no lymph nodes being removed and no radiation, you should heal very quickly. I urge you to check out my non-profit website, BreastFree.org. There's information about what to expect after surgery and suggestions for comfortable breast forms, both silicone and non-silicone, as well as lots of other information and advice. Many women from breastcancer.org contributed their personal stories and photos to BreastFree.org. Some of the non-silicone forms I recommend are inexpensive, like the Amoena Leisure form #126 or the Still You Illusions Breast Replacement. 

Insurance will most likely cover high-quality silicone breast forms and two or three bras, so that should get you started once you're ready for a fitting.

I wasn't quite a big as you before my bilateral mastectomy (I was a 34 large B/small C), but I've enjoyed going even smaller since surgery and I now generally wear a 34A. I do have a pair of larger breast forms that I can wear when an outfit looks better bigger--one of the advantages of having a bilateral with no recon is that you can be any size you want! 

Barbara

seltzer

I am so grateful for breastfree.org, I feel like it provided me with a wonderful alternative months ago that I wouldn't have considered otherwise, just because my surgeon was pushing PS.

I was just reviewing the personal stories and found them so so helpful.  

O a, gpomg tp prder what your have recommended just to have something on hand.  Would I do a 36 or 38 for the swelling?  

So I can have things on lower shelves, drawers and I should be okay?  (Yes I am not getting a SNB so far--final decision is tmw).

And I don't need to throw out any clothes just yet, right?  Since I could have some options with the prostheses?  

You have done a wonderful service, as have so many women on this board who keep our spirits up!

nosurrender

Breastfree is a great site!

If you have a recliner at home, you may feel more comfortable sleeping in it for a while. If not, build a nest in your bed with pillows in the back and on the sides of your body. This way you can raise your arms while you are sleeping and pillows support you.

Good luck with your surgery!

Erica3681

seltzer and no surrender, thanks for your kind words about BreastFree.

seltzer, I'm not sure exactly what you're planning to order. If you're thinking of one of the post-surgery camisoles, like the Softee, you'll want it not too tight--I found I needed to go up a size. I hope you'll get some more feedback from others about that. I really feel it's best to stay with the camisoles and "puffy" forms that come with them until you're reasonably well-healed, which should take about 4-6 weeks. During that time, the puffies will give you some shape, but won't look very natural. (Some women decide to go flat, but I wanted to look as much like before as possible; it sounds like you feel that way, too.) For the first month after surgery, I wore button-down shirts and (once I could comfortably pull shirts over my head) tee shirts under open blouses or sweaters as a bit of camouflage. Also, I bought a couple of vests, which I could wear over blouses or shirts. On the eleventh day after my surgery, I went to a party (one I really didn't want to miss!). Because I'd planned ahead, I had a comfortable silk blouse and a cute vest to wear over it. Only a couple of people there knew about my surgery and no one else would have guessed.

Regarding your current clothes--don't throw out anything!! I can wear everything I wore before. I think that's true for most women. If you have some tops that show a lot of cleavage, you may need to wear a lacy camisole bra or something underneath to cover up a bit, but other than that, you should be able to wear all your clothes. I like fitted tee shirts and haven't had any problems wearing them.

Barbara

seltzer

Going to order the Softees today.  Do you agree that white is best so you can bleach them?  Don't know how much spill from the drains to expect.    

I have to go to my son's high school graduation about 3.5 weeks after surgery, so will start looking for a vest now!  I've lined up all the button up shirts already!

Thanks! 

Erica3681

I got white. Didn't have any issues with the drains.

seltzer

Ready to go for the PBM on April 23!  Thanks!

Ellen 

Erica3681

Best of luck, Ellen. Please let us know how it goes.

Barbara

Katalin

Hiya, I was going to say, don't throw anything out too!  Before I was able to wear the final prosthetic, I tried the little foamie ones, but they kept travelling around, so I went without prosthetics, and wore blouses, and a boxy jean jacket on top til I was healed enough to be fitted for my Amoenas.  My mother who is bigger is doing the same thing.  I figured people in public were looking at me not as much as I would have imagined.  And friends and family sure didn't notice/care!  Best of luck Ellen!