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Cydney
Cydney Member Posts: 85
edited June 2014 in Living Without Reconstruction After a Mastectomy
Advice on EVERYTHING!
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  • Cydney
    Cydney Member Posts: 85
    edited August 2009

    I finally decided about 2 weeks ago not to have reconstruction.  I had a left mastectomy in April.  This was after a reoccurrence of DCIS after a lumpectomy and radiation 2 years ago.  Anyway, I was told that I had to wait until after healing before they could do reconstruction.  I was told that I could only have a tram flap or DIEP surgery.  After lots and lots of thinking, I decided I don't want to go through more surgery and healing and end up with scars all over my body.  One is enough.

     Any way, on to the things I need help/advice with.  I finally got up my courage and went to a mastectomy store 2 days ago.  I just wanted to see what they had and how it might help me look more symmetrical (I was a 34DD on both sides - now the cups are only half full).   I walked in and the girl at the desk asked my what kind of insurance I had and do I want a fitter and that I could have 3 bras and one form every two years and fill out these papers and read this privacy policy that says they can discuss my "case" with other for "health" reasons - and I said I didn't like their privacy policy and couldn't I just buy things without insurance?  And she old me it was too "pricy" and I told her I just wanted it all to be like Macy's - I come - someone helps me with measurements if I ask and I pay some money and leave - no one talks about me to anyone. I left in tears.

    I guess I'm still a bit sensitive.  How do I get over it?  Can I purchase some cute bras and forms over the internet?  

    Also, I have a really ugly scar.  It's all puckery and lumpy.  My husband says it's like a bad tuck and roll job (upholstery) on a 52 Chevy.  He's right.  I have more tucks and lumps and bumps than I thought I would.  My original lumpectomy scar was nice and straight - I thought my MX scar would be similar and I'd just have a flat chest.  Can I do anything about that?  And who do I ask?  I'm not so trusting of my breast surgeon as he's the one who created this scar.

    AND, I told you ladies I had questions about EVERYTHING, I get some tightness and swelling feeling in my underarm/scar area - is that lymphodema?  The plastic surgeon said I am still healing - how do I tell the difference between healing and lymphodema?  Who am I supposed to ask about all this? 

    I'm feeling so lost. I feel good about my decision, but I don't know where to go from here. 

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  • dee1961
    dee1961 Member Posts: 1,672
    edited August 2009

    Hi Cydney,

    Since you decided against reconstruction I am assuming you never saw a PS. You may want to consult with one regaurding your scars. I'm sure they have some kind of revisions they could do for you to make you more happy. Plus it should be covered by insurance. As far as the swelling goes it could be lymphedema. I went to a PT that specialized in lymphedema. All of the appointments and sleeves were covered by my insurance. Do you have access to a pool? I'm just asking because when my arm flares up, I head straight for the pool. The compression of the cool water really helps me. Good luck to you!

    D~

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  • dee1961
    dee1961 Member Posts: 1,672
    edited August 2009

    Well it's me again.... I just saw that you have spoke to a PS, maybe get another opinion? Sorry, I should have read more carefully. :)

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  • Erica3681
    Erica3681 Member Posts: 1,916
    edited August 2009

    Hi Cydney,

    Hope I can help with your questions.

    First, there are a number of online websites that sell a good selection of mastectomy products--breast forms (prostheses), bras, camisoles, swimsuits. Insurance normally will cover some of these things, but I've found that the online sites have bigger selections than most individual stores. On my non-profite website, BreastFree.org, I have a section called Helpful Links, which lists some of the websites I and other women (many of whom I met here at breastcancer.org) have liked. Also, you might want to check out the Breast Forms section and the Bras and Camisoles section for some options that are particularly comfortable and attractive.

    Second, regarding your scar, it sounds as if maybe your surgeon did a skin sparing mastectomy thinking you might want reconstruction in the future. The extra skin can give a lumpy appearance. If that's what your surgeon did, he might be willing to remove the extra skin, getting rid of the lumps, and give you a nice straight incision. Often women go to plastic surgeons for this, so that's also a possibility. 

    Third, regarding the swelling in your underarm area, it sounds as if lymphedema is at least a possibility, so it would probably be a good idea to check it out. Seeing a lymphedema specialist is a good idea. Also, the women on the Lymphedema forum here are incredibly knowledgeable, so I'd recommend you post a question about it there. Several of them started a terrific website, Step Up, Speak Out, which has tons of information and is worth checking out as well.

    Hope this helps. Don't be too hard on yourself for being sensitive. It's definitely a process getting used to your new post-mastectomy situation and finding your new normal. For me, ordering things online did help some, although I got the big ticket items (breast forms and a couple of bras) at my local fitter as that was easier insurance-wise, plus it was helpful to try things on in person. Also, I've found the women here to be a great resource. We all help one another learn to live breast-free.

    Barbara 

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  • carolehalston
    carolehalston Member Posts: 6,887
    edited August 2009
    Cydney, sorry this is all so stressful for you.  I agree with dee1961 that you need to consult a good PS.  I feel sure your scar can be improved.  Also, when you're calmer and feeling more in control, go back to the mastectomy store--or another similar store--and fill out the papers and go through the rigamarole to get good quality bras and prostheses that will be paid for by your insurance company.  That would be my advice.  Good luck!  Smile
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  • PT6
    PT6 Member Posts: 76
    edited August 2009

    It is very useful to have a trained fitter help you - particularly for your first prosthesis. In addition, you mention swelling which may need to be compensated for. just cross out and initial the statement that "they can discuss my "case" with other for "health" reasons". There is no reason that that will be necessary - it's just standard legalese stuck in the form. If you don't like it just cross it out. The fitter at the place I go is fantastic and it takes quite a few tried to get the right combination. The receptionist on the other hand is a cold fish who never smiles and told me accusatorily that I had not gotten my free bras or prosthesis in over 2 years. She sounded as if I had committed some sort of crime.

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  • MarieK
    MarieK Member Posts: 911
    edited August 2009

    I'm in Canada and just had my left mast last Friday. 

    I ordered a couple of forms and bras online through Sears.  The "sports" form (lightweight) arrived the day of my surgery and my bras arrived yesterday (I just ordered my pre-op size and they're fine). 

    I can't get the bra on yet by myself so I've been wearing these step in camis with a shelf bra.  I pinned the sports form into the cami and went out for the first time yesterday in public - in clothes!  It looked ok.  I asked my husband to keep a breast check on me and let me know if it was popping out - but it was fine.

    I'm not sure about recon either - I'm 47 - buth that's mainly because I dread having any more surgeries. 

    I had a good look at my incision (still covered with staples) after my shower yesterday and I'm not sure how it will heal because it seems "puckered" as you said.  I'm hoping that will smooth out a bit over time.  I can only compare it to my c-section scar which is a very narrow fine line - but maybe that's more to do with the surgeon's skill than with how the body scars?

    I think I might have gotten used to being flat chested if had a double mastectomy (would have been easier to go flat chested and have symetry but the surgeon would not take my right breast at the same time).  We''ll see what happens there since I have had a "calcification" on that side for the last 5 years which "seems" to be b9.

    Oh well I'll try the forms for a bit and see how that goes...will have to look into a proper fitter but for now it's ok.

    The part I don't like is the look of the skin around my incision.  I never realized this before but the skin UNDER my breast is different than the skin that was on top of my breast.  My underbreast skin has larger pores and now this skin is what is showing around my incision.  I'm wondering if that will change over time?

    Is your skin the same consistency or do you have what I have too?  I was a 36 C and after 2 pregnancies and breastfeeding I was kind of saggy.

    But the skin that was "pulled up" looks like chicken skin to me!  I don't think it's bad enough to undergo a surgery to fix it or the scar.

    At this point in time the only thing I can tell you is maybe this is like child birth. 

    After a while you might forget about the pain and discomfort and go for recon for the end result.  I don't think there is any time frame on when you can do that so just hang in there until you are completely healed!

    I'm just taking it one day at a time right now...

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  • dlb823
    dlb823 Member Posts: 9,430
    edited August 2009

    Cydney ~  Sorry you had the upsetting experience you had re. a fitting.  I don't know where you went or what part of CA you're in, but I've been treated at UCLA, and I would highly recommend them for both a plastic surgeon to look at your scars, as well as a source for bras, etc.  They have a darling little shop there for bc patients, with very kind and knowledgeable staff, and you can also deal with them on-line.  PM me if would like the name of my plastic surgeon (whom I can't say enough wonderful things about!), or a link to their shop.  Deanna

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  • TammyLou
    TammyLou Member Posts: 740
    edited August 2009

    My sympathies on the trip to the "special" store.

    I HATED it.  I felt like I was in a freaky funeral parlor and if my #1 supporter had not been with me, I'd have hit the escape hatch.

    No kidding.

    So, I suffered through.  (sigh)

    Yes, there are lots of online stores and I think that you could figure out something without the discomfort of parading yourself in person (that's how I felt.)

    Even on e-bay...there are forms available.  Many of them are curved so that whatever chest you have left could fit in.  There are also plenty of pocketed bras. 

    The website that Erica has is very good ("comforting" is a word that I'd use.)  And, there are others.

    I think if you poke around a little bit, you can find some people who can help you get to where you need to be.

    (And, yes...I also think it is likely that the right surgeon could tidy you up a little bit without doing anything drastic.)

    Please keep us posted.

    tl

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  • Cydney
    Cydney Member Posts: 85
    edited August 2009

    Thank you all soooo much!!  

    I belong to Kaiser.  I saw the local, Sacramento, Kaiser PS and he told me I probably wouldn't be happy with his procedures because he could only do a tram flap for me (radiation) and I am too active and probably wouldn't like how he has to cut my stomach muscle.  He referred me to Kaiser's Dr. Werninghaus in Hayward, she was wonderful.  She was the most informative of both docs explaining both diep, tram, and other flap procedures throughly and also providing pictures.  At the time I saw her I thought I was going to go ahead with reconstruction.  I would need at least 2 surgeries and maybe 3.  I want shape - but not the scar results - it took me about a month to really understand that I don't want to be cut anymore.  I like feeling good.  I'd just like to look a bit better too.  

    If I wasn't so lopsided, I'd just go a la natural.  I go to the gym every morning natural.  But when I walk around in my day clothes I feel like people are sneaking stares at my chest.  I've been using the puff I got with my surgery camisole to poof out my old bras.  It isn't great, but it sort of works. 

    Thank you all so much for the info and understanding!!!!!  I've emailed Dr. W to see if she can re-do my scar.  

    My DH says he'll go with me to the fitter.  To be honest, I feel embarrassed to go back.  I really like all the information Erica has on her site - it is wonderful!!!!  You all are right - self fitting might be a bit tricky.  Although I did go to Target yesterday and get a "shaper" bra that fits my full side and I can fill it out with puffs.  My major problem is that there is a "tuck" in my skin that runs up on the cleavage side of my MX.  It sticks out above any bra I wear.  

    Marie, hugs to you!!  I am 57.  My thoughts on reconstruction kept changing, and my skin did too.  I do remember seeing large pores after surgery, but they're gone now.  I too have a saggy remaining breast - it has stretch marks from pregnancy and breast feeding and now has given in to the forces of gravity - but it is all mine and I'm keeping it as long as it's healthy. Take it easy and let us know how you're doing too!

    TammyLou, I'm so glad I'm not the only one who hated that store.  I want a cute nice one like Deanna has - or a live branch of Erica's website!!

    Dee, Carol and PT thank you so much for the support.  Feeling understood is half of the battle!!!!! 

    THANK YOU  Smile

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  • TammyLou
    TammyLou Member Posts: 740
    edited August 2009

    You are so welcome.

     Shortly afterwards, I was relating my experience to one of the men I work with.  Army "brother."  (My thoughts about the "funeral" atmosphere at the mastectomy store.)

     He said, "Well, Tammy, some women are probably real upset about losing their breasts."

     Non-plussed.  I ended the conversation and walked away.

    Then...I turned around and went back.

    "I think that what it is is that I prefer to do my crying privately."

    I wish I had the video.

     The light clicked on over his head and the battle hardened warrior man put his arms around me and said nothing.

     Even for those of us who consider ourselves (and are considered by others) to be "tough cookies"...this loss can prove to be a challenge.

    Tammy Lou

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  • JennyLN
    JennyLN Member Posts: 6
    edited August 2009

    Cyndey:  Have you thought about a tatoo on your scar?  I'm thinking of getting a vine with flowers--and maybe even a cute little monkey swinging from it!

    Best--

    Jenny

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  • Cydney
    Cydney Member Posts: 85
    edited August 2009

    Your tat sounds very intriguing!  In my family, I'm known for being sort of anti-tats.  I even resent the little dots that were acquired for radiation.  My kids have a zillion tats.  They view them as an art history project - they are the living breathing sketch books for their friend's art work.  I haven't seen anything yet I'd like to live with the rest of my life, so I have been able to resist the offer of free tattoos from their friends.  

    It's mostly one of those - nice on other people, but not for me things. Plus I am afraid of pain.

    I got a call from Dr. Werninghaus's surgery scheduler - I'm on for a scar revision in October.  She notated my file as mastectomy deformity revision.  I guess I wasn't wrong in thinking my scar was a bit ugly.

    This gives me another excuse to avoid the bra fitter!!!!  YAHOO!!!!!!!! - I don't want to be buying bras that I'll have to replace after surgery :-)

    Cyd 

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