I look for other flat chested women. A rant.
Comments
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Thank you, so much, for the overwhelming support!
I'll be starting radiation just as soon as I'm healed enough. At least the PS I met with didn't try to blow smoke and convince me to get expanders; rather, he said he would refuse to touch me until I was healed at least a year. I appreciated that. Of course, now that I've had time to sit and think about it, he may have lost himself a patient!
And Pip - what you said about being able to hold my son closer to my heart? Oh, I got tears. I loved that!
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Further advice on tight-chest syndrome: deep breathing helps calm the mind and stretch the chest from the inside.
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What type of physical therapy exercises helped with the cording? Anything I can do at home? I can't take any more doctors appointments.
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Pam...I STRONGLY suggest finding a PT that has experience with cording and/or mastectomy. It never felt like going to the doctor. She would do massage and guide me through various exercises that were wonderful. It was really good for me when I went back to work because it forced me to relax several times a week. It was extra important to take that time when I was first returning and still recovering.
It was really the massage that helped with the cording. The exercises were more geared toward range of motion and avoiding losing strength while healing. The massage was intensive, but never painful. And always afterwards, my whole chest felt better. The cording let up gradually throughout.
I am SO glad that I pushed to get PT. My bs never mentioned it. I got it by asking my general practioner for it. My bs would never have written the scrip, I don't think.
I do think that if you go to PT, it is really really really important to research it and find someone with experience with lymphedema, cording or mastectomy.
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Pam: Also agree with CLC. You need a PT masectomy specialist who does massages. I had it for cording and a very tight chest. It felt wonderful. Don't wait. It won't get better on its own.
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I was so happy to come across this. I'm a uniboob, and wear a prosthesis just because I'm a D+. But when I swim, or even wear my suit, no prosthesis. I'm sooooo tired of all of the "inspiring stories" that all had reconstruction, so "they woke up from surgery looking the same as when they went in" I've chosen not to reconstruct for many reasons, but start to feel as if I'm inferior, uninformed, or.....? for not having reconstruction. Thanks for starting this thread!!! Linda
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Hey, there, Linda! Nice to see a fellow uniboober that sometimes goes flat! I am a D on my remaining breast, too. I go flat everywhere except work, where I teach high school and am reluctant to raise those issues there. I don't have time now to chat, but will check in again, soon!
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PamelaHope, a good certified lymphedema therapist ("CLT," can be an OT or a PT) would also have experience in cording. There's an excellent website with a section on axillary cording and a section on finding a CLT: http://www.stepup-speakout.org A couple of the women on the board here are involved in that, Kira and Binney, and they are EXCELLENT sources of information. I feel like a broken record with this because I've put it in other posts and hopefully it wasn't too recently here, but it's so important.
I've had cording, and an unusual complication of cording. I also have lymphedema. It's shocking how little oncologists and surgeons seem to know about these problems (check out the lymphedema discussion boards here for some scary stories about that). I was really lucky that none of my providers denied that I had any problem, and that I had fairly easy access to a CLT, although I also had to push for it. There are answers to both of these problems, but the treatment isn't taught in regular PT school (my partner is a PT). The cording can be treated and basically "cured." Lymphedema can be managed. I don't think there's any way I could have done what the CLT did for my cording my myself. She used both hands.
I echo what everyone has said about the tightness. It does get better. PT helped, and swimming got me a few steps further.
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Linda, welcome, and I share your annoyance. I would love to have shiny new boobs, I really would. I am not opposed to recon. But when I started looking at pics, I realized that the ones that looked OK to my eyes were the ones done in conjunction with prophylactic mastectomies and usually using the patient's own tissue.
I really don't want silicone, that much I am clear on (besides all the silicone recon jobs I have seen are too big for my taste), but I also don't want a 10-hour surgery with a high failure rate, and right now I do not have any extra tissue anyway.
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I'm so glad to hear I'm not the only one who had hidden cancer found only after the bmx. Phew!! I hope the medical system ALWAYS offers women the choice to conserve their breasts with appropriate lumpectomies! But I am SO glad my docs all supported my decision once I made it clear that I am deciding what feels right to me. I prayed and prayed and felt and felt my way through that choice. Instinct is powerful!!!
As for cording, I saw two pt s and they both have shown me ways to rub. This last week it got a little tighter when i did not stretch as much. I have to stay on this thing!! The website you showed us CLC? is great because of the photos! My tightness is exactly like what is depicted, although from the outside my arm looks completely normal. Nice to know I'm not making it up. Stretch, rub, breathe, relax.
It's true about the deep breathing to open the tightness from the inside. In my case, even a medium breath was painful. Not so much anymore. Still a bit tight, but I just have to keep stretching. It helps to see all your posts about that!!
Thanks also for sharing about that sadness that hits you sideways. That's how it is! Mostly I am ok. More and more ok.
The more I heal, the more I consider being strong enough for another surgery. But to me it seems like if I had reconstructed foobs my husband and I would want to take them out in order to be truly intimate. They would get in the way of what really is, our real life together. I don't see how I could be close to him or myself if I tried to cover my chest that way. That's just me.
I have yet to come across anyone who is offended by my appearance. True, I haven't made it to the grocery store since August. Wish me luck; I'm going today.
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It seems to me, that we cannot expect others to be comfortable and accepting of our 'flattness' if we cannot embrace it as well. I am so glad this thread was started to give us all the courage to stand by our decisions knowing that we are still real women.
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I had a lumpectomy for DCIS and then was told I had clean margins and just to do radiation. Got a second opinion, decided to go for a BMX. They found an extra 3 cm of DCIS in the breast that had "clean margins."
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Welcome Linda.
You All remember Bewitched? If recon was as simple and perfect as a twitch of the nose, I would have signed up. Mind you, I would have still opted to have both of the "tried to kill me" offenders off, though only one had so far shown its true colors. The "thought" of reduction had consumed nearly every waking hour of decades of my life and so I had thought this through. Without BC and only reduction, I would have opted for a C, maybe a B, a far cry from the M-O that I started with. But then there was BC and this is not Bewitched. Throw in an offer to avoid radiation with mastectomy, my obsession with symmetry, minimizing time on the table, minimizing recovery time, minimizing the need for future surgeries and anesthesias, minimizing scarring, being OCD about foreign bodies, having no desire to cannabalize my good parts even with their imperfections and the decisions for BMX - No Recon became no-brainers. After finding my way here and seeing the real reality of recon, I feel I didn't just dodge a bullet, I dodged the war. Granted what you see here is probably skewed as you are more likely to see more of the problems here because those that go perfectly likely move on. But even when it goes textbook, wayyyyy too much for me.
PT and lymph massage training had been anticipated as customary after treatment with my BS. The concurrent broken wrist and softball hematoma under my arm on the proph side made it all impossible. 6 months later when the wrist was fully healed, I had good ROM, showed no signs of lymphedema and it was all taken off the table. Not even sure if at that much later date whether insurance would have covered it. I surmise not. So while I think it is really likely a very good idea, I have no experience to offer. Seems too many times in my life, for one reason or another, I have been left to my own devices to pull myself up by my boot straps and make it happen with no help. Once again, after the first 10 days, I did it on my own. I do want to offer that I had to be reminded when stretching to absolutely not bounce against the stretch. I started very very very gently stretching from the very first day home. As everyone says, keep stretching and moving.
The worst parts for me in that first month? After effects of anesthesia and opiates received in the hospital. One of my wiser moves was going home probably a day earlier than I should have and getting off the opiates. The universal hate 'em stupid drains aggravated by the stitch holding it in place giving way and thereafter having to tape the tubing to my body, having to move extra carefully not to pull it loose, nevermind after my sister-in-law left, having to deal with them with one hand. Of course, the last one to come out was that one. I would come to fully understand why later but being forced to sleep on my back, something I NEVER did prior. I came to understand later that the reason I had NEVER slept on my back was because the sheer weight of my former breasts had made it more and more difficult to breathe. It was so unnatural to lay on my back that the muscles were quite unhappy. Laying the arms on pillows helped quite a lot. An unanticipated joy of all this was the self-comfort I feel when laying my arms across my chest, something I was never able to do prior. Major milestones were when I would FINALLY be able to once again sleep on my sides, one coming way before the other. I am still a side sleeper but occasionally will still sleep on my back.
That feeling of a steel cable encircling and cutting the chest, only to be exacerbated when getting in a moving car. 2½ yrs out, can't say it is fully gone even now. However, it did slowly get better and better and better. Now is no worse than wearing a bra and is felt mostly where the side of the chest transitions to the underarm. I do not notice it at all in bed but nearly always notice it during the day though it is really like background white noise. No longer grabs me by the throat like it did in the beginning.
Barbara
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Hello all, I am new to this thread. I am scheduled for a mx on the 26th. I am a 38DD and after much discussion and persuading the surgeon and my onc, I have them agreeing to do a double. I just couldn't mentally deal with the lack of symmetry and also lack of choices I would be left with if only having a uni. Now that that fight is over, I'm collecting info to help me prepare for what's ahead with the surgery. I have read the last few pages of this thread and it seems that some of you have had your mx fairly recently. I don't think I have enought time to loose the 20-30 lbs that would help with the shock of seeing my stomach, but any other suggestions you might have for what I might need immediately after, would be welcomed. Oh, and I just couldn't see myself giving up a year of my life for recon, so that's out too. Thank you for starting and contributing to this thread.
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Happyraccoon,
I totally get your need to write so much. Blogging on Caring Bridge is what kept me sane (ish) from the time of diagnosis (I started the blog the next day to avoid answering the same questions from a zillion people) through months of spending most of my time alone. I happened to get diagnosed during the last week of the fall 2011 semester, so really all that was left was grading, very little people contact at work. Surgery in January, chemo from February through April, and I took off the entire spring semester. I had thought I'd work half time after recovering from the surgery (this plan was encouraged by oncologist), but chemo did me in. Many days I could hardly get out of bed without fainting, let alone make it to work! Taught one class during the summer as compared to my usual three. It was the perfect work schedule! I was still bald when the summer class began and wore hats the whole time, and I actually felt more comfortable then than I do now, with hair but so different it's disorienting, and of course with a flat chest.In the summer I had tissue expanders in.
In retrospect, after the multiple procedures and the infected implant that led to removal of implants and decision to remain flat, I do wish I had rejected reconstruction from the start. In my case, in the long run, it turned out to be the wrong decision. That said, maybe I was in better shape psychologically for several months when my body, at least in clothes, didn't look so different. (Not counting the chemo weight gain.)
My son is nearly 12. He hated the tissue expanders because thy felt hard when we huggd or cuddled. He was looking forward to the implants being softer. Now I am just weird. He saw my chest a couple of times with the expanders in and got an accidental sighting of my chest recently. In his case, his anxiety is lower if he sees/hears/knows than if left to imagine the worst. That said, his sub-conscious imagines the worse almost every night. In his dreams I have now died quite the variety of deaths. Yes, he was worried from the time of dx, but it went to a whole new level with my recent emergency hospitalization and surgery due to infection. The message he seems to have internalized is that your parents' reassurances are no guarantee of anything; the stats that give me a good prognosis are meaningless; anything can happen; the worst can happen. Not that we'd denied the possibility that the cancer could eventually kill me, but recent events were just proof of life's unpredictability. He sees his shrink tonight; I see mine tomorrow; partner sees hers on Wednesday.
All those warnings about the end of the intensive treatment period being when it all hits emotionally had led me to expect a meltdown after chemo (no radiation in my case), but I guess end of intensive treatment period is really now, after both planned and unplanned surgery.
I also want to note that I want people to know what has been lost. If people look at me and see nothing wrong, I will not feel like I am being seen. I want people, even strangers, to know that I am flat because of breast cancer. Do we need a tee shirt that announces this?0 -
Pamela,
For cording, my PT worked on the area. The exercises she gave me workd only on range of motion. So it's possible PT is the only way to address coding.0 -
Everyone, Thank you for your advice regarding cording. I made an appointment with the breast surgeon tomorrow to discuss my arm..
Frapp, You had asked about surgery and the two most important things are a button down shirt as you won't be able to lift your arms over your head and a wedge pillow for your bed. Or just lots of pillows. It is hard getting out of bed. You won't have full use of your arms. I had to use my stomach muscles and legs. I left the hospital with the drains pinned to a surgical bra. Also, keep everything you need low. I saw huge lists on here and it is overwhelming. That is it basically.
This tight feeling in my chest is difficult. I have a feeling when I get my cording resolved swimming will help.
Being flat is hard. I came to this site saying I was not ever going to wear a prothesis ever. Now, I think I need some type of padding to at least be a AA. I wonder if there is something to wear that is not like a prothesis but more like a padded bra. Pam0 -
Merylin
I understand your concerns for your son. I lost a daughter to cancer in her teens and had the same concern for her brothers. The innocence of life is snatched from them much too soon. One of the boys was a talker. The other one's anxieties and stress showed up in his dreams and physical symptoms. It sounds like you and your son have good communication and that is by far the best thing for him right now. That he can voice his fears is so important.
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Thanks Pamela. What is cording?
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Pamelahope - one of the women at my local support group recommended the Genie bra. I bought a 2-pack this weekend at Target to see what the hoopla was about. They have a pad in them -a light, fiber pad - that looks like it could give one the semblance of a curve. Maybe that would work? It only cost $20 for 2 bras.
Pip57 - I told my son last night what you had said about my hugs post-surgery just being closer to the heart. For once he was speechless, but the grin - oh! the grin! - on his face was priceless. I'm so sorry to hear about your daughter.0 -
Merylin, thanks for the thought about the subconscious and/or dreaming that our kids are doing around all of this. The breakthroughs for us so far have been:
1. sitting down to read a picture book about a family whose mom just found out she had cancer. I believe it's called The Cancer Garden or something like that. The moaned and groaned about my choice of book, but I told them it would 15 minutes of their time and they don't have to like it, that it would be over sooner if they listen. Within 3 minutes of reading there was some thumbsucking on both sides of me as I read. The pictures were wonderful: adults coping gracefully, honestly and creatively with a difficult situation, children being well cared for with their needs met in new ways, etc. Of course the book didn't match the way any of us really felt at the time, but it gave us all something to talk about. Strive for.
2. I too reached out to my friends by sending mass emails and having my closest friends send out mass emails to gather people to the lotsahelpinghands website another survivor put up for me. It was AMAZING to see how many people wanted to be with our family, doing favors of all kinds--especially spending quality time with the kids and making sure their life had some joy in it--coming into the house to take care of our living space, cooking, cleaning, washing, etc. That was really powerful for all of us to witness. The messages were things like: Bad things happen to people, but you never have to be alone! You can count on your friends when things get rough. You can find new ways to be ok, no matter what.
3. Getting my hugs back. Period. Just being physically able to hold them again!!!
4. Today--YAY--huge breakthrough!! I drove for the first time since August this weekend and today was able to pick my kids up from school!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! An amazing feat!! And I never appreciated it at all until today. I'm ok with these sort of changes.
They don't want to talk about when I am ready. They bring it up usually when I'm feeling like I don't have time or interest in discussing it. In their own way they are working it out. But I can only imagine what it would be like for them if I had to have emergency surgeries such as yours. Or all the other heavy treatments a lot of you are plowing your way through!!! It must be really hard.
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Alexandria, I laughed out loud when I read your last post. Not funny!!!!! But so hilariously real. Congratulations on your excellent instinct.
Good luck to you, Frapp! I bought all kinds of stuff, including the special camisoles, etc. Turns out, the stuff I ended up using is:
medical tape--for securing drain tubes to my waist, thighs, wherever they seemed to bunch or tangle
two pouches--zip lock bags work for some; I just happened to have some ready-made from the expensive camisoles I bought but never used. I put the drain bulbs in the pouches and pinned the pouches to the inside of my baggy button down shirt
2 safety pins
a long shoestring (any ribbon, lanyard, or string would work) over my neck on which to hang the drain bulbs while I'm in the shower.
oversized, SOFT button-down tops
triple antibiotic ointment--for the drain sites once they came out, a bit red and pussy but it went away
cocoa butter--for massaging wounds once they are sealed and pt says it's time
prayer shawl--very optional and personal choice, of course
Later on, once I started walking into town and back, I used a good sports bra (soft, snug, not too tight, not too loose) to help keep the swollen dog ears from rubbing my armpits too much
good luck to you!!!On another note: Today was my first trip to the grocery store. There were a few people who noticed, actually. Women. Pushing carts. I just wore my sunglasses if I started to feel shy. They're pretty big and flashy and hide my expression, somewhat. Nobody stared. Just a few people who know me (I live in a small small town) glancing, politely trying to get used to the new me. I also cut my hair really short, which gives people a really easy way of saying, "Wow, you look great."
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http://abclocal.go.com/wabc/story?section=news/lifestyle&id=8839763
Here is the story. They used my name and they mentioned my mastectomy! I walk around touching my flat chest!
happyraccoon- you asked how it was. I was a nervous wreck that night. It is one thing to 'represent' and another to be the one doing it. As you can see they edited it really well and the blunder I made was not worthy of the interupted sleep it caused. I am glad I did it either way though. I really do want to help normalize this option for the world at large and for US!
I would never have thought that an aspect of the cancer experience would make me feel so passionate. But I feel this is an issue of women's rights. Going Flat must become normalized and women who want to forgo reconstruction should not wear breast forms for any other reason than having a preference to wear them.
When the beautiful, deminuitive 75 year old fella pool program attendee, looked at me and pinched her 'bubby', which is what she called her breast form, to tell me she hated wearing it for the last -- years. Her daughter keeps telling her to put it away and relax. She called me brave. A teacher. She looked at me in awe.
How many years?
I fell in love with her, and fell in love with being a feminist, again. But this time, with greater purpose.
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t-shirts!!! YES
I've been online shopping for one. http://www.cafepress.com/mf/55595198/bc-survivor-womens-pink-tshirt_tshirt
Maybe. I thought I saw another one specifically for flatties. I'll post if I find it again. It would be nice every once in a while to wear it. Have you found any?
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found it. http://www.cafepress.com/mf/71741293/breast-cancer-natural-survivor-tee_tshirt
corny but not.
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MT, wonderful clip. You are beautiful and you wear your body beautifully. Thank.
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The tightness after surgery, yes, that is pretty wicked, it felt like a steel cable wrapped around me with no relief. A year later, I feel very good...I only have pain when I wear forms, so I don't do that very often.
Ok, about the "belly" well, the only real difference is without breasts, *we* get to see our own belly, LOL, it is always there and others can see it, but we ourselves couldn't see it because of our breasts. Mine is not flat, my goodness, it wasn't flat when I weighed 107 pounds...so I am not looking for that. And if I focus too much on my belly I just remind myself ...other people have been looking at that for years, *I* was the only one not seeing it :-)
About after a mastectomy, I was very fortunate as I was given 6 sessions with a LE therapist. The rules were no exercising until 2 weeks after, and then gentle stretches she taught me. Please correct me if I am wrong, but I think the new findings on developing LE are that exercising too soon can bring it on. I was told to exercise day 1 on my first mastectomy and yes, I have LE in that arm. The second one I waited the 2 weeks and all is fine.
Pamela, your doctor may deny you have any LE issues, so ask anyway if you can see a therapist. breast surgeons are not known for their LE skills, sadly enough.
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Even though my son was 21 at the time of my diagnosis I knew it would still scare the heck out of him. He is an only child, and I had him on my own until we met my husband when my son was 3. When my son was only 16 when he lost his only uncle (my only brother) to brain cancer. So my son and I are extremely close and we rely on each other immensely for emotional support. In the few days before my mastectomy my son cried, and listened to my brief descriptions and reassurances that everything was going to be fine, but he didn't talk - and that worried me. My son is not religious, but I go to church with one of my son's old bosses who is not much older than he is. I asked him to call my son and make sure he was ok. Instead, our friend drove 2 hours to where my son lives and took him out to lunch to talk. I am still so grateful for this kindness. Since then my son and I have talked openly about my first operation and second upcoming one. He finds it a little weird talking about his mother's breasts - or lack thereof, but I believe that talking about it eases his anxiety.
Happyracoon - my first 'coming out' event was the office Christmas party everyone insist I attend, even though I was still offically off on sick leave. I was so scared - I must have worn 3 layers of clothing and was sweating like crazy. As the evening wore on I took off my jacket, but I still had on a very gathered blouse and camisole underneath. I must have bought a ton of new clothes initially to convince myself I looked 'normal'. Now I am having the second breast off to avoid the endless worries of new bc, and to make myself symmetrical. I really hope I can come to a place like MT1, Barbe1958, Starak and the others who are comfortable with the new women they are and who want to make flatness acceptable. I didn't want recon for the same reason I don't like wearing a prostheses. Something happened to me - something big - I totally agree that we shouldn't have to endure multiple recon surgeries or wear uncomfortable garments in order to pretend like it was a walk in the park and it's over. We are forever changed. Everyday we get dressed we can't help but be reminded, and that is still true for those who had recon. I am so glad I have a place to 'talk' about this stuff, because if you talk to people you see everyday they really don't want to have to hear about it, or at least not more than once or in detail.
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I have to say I wear a prosthesis . I am twelve years out but still the nerves on the surface of my mastectomy are sensitive enough that the rubbing of a shirt without the bra annoys me alot. So I wear the prosthesis. and just the one boob just looks odd without it..
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Frapp, this is axillary cording. Read back the posts on the past couple pages or so on this thread for some experiences with it:
http://www.stepup-speakout.org/Cording_and_Axillary_Web_Syndrome.htm
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