I look for other flat chested women. A rant.
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Thank u ladies- the day is here !!!!
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Have a safe and easy "boobectomy"
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A safe and easy surgery, red.
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redninrah, best wishes for your surgery today.
crystal, my PT told me that I am technically stage 0 lymphedema, even though I have never had any swelling. She says anyone who has had ALND is compromised, and considered stage (or grade???) 0 if they have nothing in symptoms or swelling. If you progress to early lymphedema, you can manage it very well with simple maneuvers, and it is important to do that because if it is left untreated, it can progress further and eventually become more or less chronic. So, if you continue to have arm pain, even though you do not measure (I don't measure either - she told me to pay attention to how I feel rather than numbers) you should be evaluated by a lymphedema specialist. It is not an emergency, so don't expect to get in within a day or two, but it certainly should be looked at within a week or so.
Ladies, I seem to do very well for a while, then have a crash-and-burn major pain flare up after being active all day. I had a great day yesterday - got myself up early, fought the traffic to drive in to the university to attend a weekly lecture that I had been missing terribly, then did gentle yoga, and went out to lunch with a friend. Felt great all day. Came home, started having major pain, my uplifted spirits took a major nosedive and I was so tired, depressed, in pain all I wanted to do was cry. Tears did not come. Went to bed without pain meds or sleeping aids and was able to sleep a couple hours at a time, interrupted only by my every 2-hour hot flash. Woke with soggy nightgown (I often change them at night, but apparently wasn't awake enough to do so), and a much better attitude. Still sore - wonder if the yoga was too much for me - I don't monitor myself very well when I am feeling good, but do a much better job when I am feeling like crap. I wonder why that is. Inquiring minds want to know.
I looked pretty good yesterday in my button-down shirt and new boiled wool vest. Briefly considered the foobs, too much trouble - living free is so much easier!!!! I think of MT1 every time I realize this! Thanks again, as if you don't already know how much we all appreciate you here!
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Redninrah, wishing you the best with your surgery!
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Same here Red, wishing you all the best and a speedy uneventful recovery.
So far, my self-diagnosis ;-) is scar adhesions. Worst problem area is exactly where the end of the incision was tacked to the chest wall under the arm. Also thinking there is a nerve that is caught up in it. Think what I really need is a myofascia (sp) release therapist - not sure there is one in my area, that insurance probably would not cover this much time later, cost, and not sure yet if I am in enough discomfort to warrant...
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Hi, I, home, everything went well, but I'm super tired
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Rest well tonight, redninrah. Take your pain meds as directed, keep ahead of it. Gentle thoughts for you tonight.
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Take care Red. Walk around as much as you are able without over doing it.
I don't know if it is related to exercise, or the fact that I am just a year and a half out from surgery, but this week, I seem to be pained almost like my scars burn, and tired at the end of the day. Itchy too. This seems to come in waves and I do get relief, thankfully. The axillary webbing seems to be giving me the tennis elbow type feeling.
It is funny, because overall, I feel great, best I have felt in the last two years.
Outfield, I was listening to a podcast, perhaps Freakonomics Radio and they were talking about technicians who read cancer results. They placed an image of a Gorilla somewhere within the images and later asked to see if the Gorilla image was seen and more often than not, it was not. The technicians weren't looking for gorillas.
It is evident if you listen and watch people that they often wait on a result they think is a foregone conclusion, sometimes they even finish sentences with the words they expect or want to hear.
I must have mentioned seeing a man in the subway whose face was extremely puffed up and seemed to droop off the structure of his face. At the time that I saw him, I was extremely sensitive to how me and my new flat body was being received. I could not stop looking at him. He was using an earbud headphone in one ear, the other, the ear closest to me, was resting about an inch below his jawline, without an earbud. Although I was struggling with my own presentation and reception, I could not stop looking at him. Wondering how he fared emotionally. I remember thinking I should tell him I am flat chested, a freak too (I mean this in a compassionate, connective sort of way).
So, yes, we never really know what people are thinking.
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Years ago DH had bypass surgery with his chest cut open. It was over a year later that the scar began itching. Did finally stop. They said it was nerves regenerating.
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My C-section scar STILL itches a little sometimes, and it is 20 years old.
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I have a huge scar from gallbladder surgery about 32 years ago and it itches, also no feeling around it. And it's not near as pretty as my MX scar
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Hi Red!! I'm in Ottawa too!
Sounds like things went well. I've been through it 3 times. Lumpectomy in 2001 - Right side in 2010 and Left side in 2012.
I've got no boobs left - so hopefully this is all done with! I figured out a few tricks along the way. For burning and inflammation - take an ice pack out of the freezer, slip it into a sock and shove it under your armpit (or anywhere else your sore). Brings down the swelling and feels great. If they gave you antibiotics in case of infection, take probiotics or acidophilus. Otherwise the yeast infection afterwards can be brutal. I used Bromelain (herbal remedy made from pineapples) to speed the healing and it really worked. They use it in Germany in hospitals all the time. No side effects either.
I LOVE being flat. I'm petite - so it suits me. Just gotta watch the tummy doesn't get bigger otherwise I'll look like a teletubbie - probably the little red one. When I go out somewhere special I put on the foobs but when I get home I can't wait to take it all off! I was originally going for right side recon - but I had complications with rads and infection so it was out of the question. So I decided to get the left side done after living 2 years with one boob. I absolutely hated it. And now I get to be any size I want depending on which foobs I wear.
On the more serious side. It will take some adjustment accepting yourself this way. It did for me. I'm still struggling with it. But every day it gets a little easier.
Take care of yourself Red..
HAPPY VALENTINES DAY EVERYBODY
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There's a big difference between a scar for a bypass and scars for thiings like mastectomies: being right down the middle. The body doesn't have nerves that cross the midline outside the central nervous system. So the nerves cut in a bypass, even though it's a huge procedure, are the little bitty ends of nerves. They can grow back. Mastectomies and ALND's are different. They cut all sorts of larger nerves that may never grow back, including the big old intercostobrachial someone on this thread (Linda is it you?) has referred to. That's the one that carries sensation for the back of the upper arm.
I feel lucky my occasional itchiness is not so bad. For me, the skin problems from the radiation, which are also itchy, bother me a lot more.
But I wish I knew why the pain from the ALND comes and goes. I know that sometimes I feel totally fine. When it's bothering me, I worry about being disabled by pain if I live to be 80 and I can't get it out of my head. And my poor pec, a little of which was sacrificed for clear margins, is the same. It's a muscle injury I just can't seem to get beyond. It's always tight. Most of the time it doesn't bother me, but for reasons I don't know there are times when it feels like a fresh injury, and then of course I get anxious and focus on it, and then it bothers me more.
But I have really good function. I can swim and play sports, I can fully do my job, I can climb and carry heavy things. I just have to work on my anxiety about things not being fixable.
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Outfield, I have some nerve damage in my back where they put the epidural when my kid was born. It is about the size of a small fist. The first couple of years it was always there, pins and needles, pain etc. Then it slowly, slowly got milder and sometimes disappeared. But it still comes, just in a milder form and a smaller area, if I am tired or off for some other reason. It is quite weird.
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Momine, I can relate to that one. I had an Ectopic pregnancy manay years ago and had to have my Fallopian tubes removed. When I woke i had a burning sensation just like the size of the tip of a large cigar right below the scar on the side of my groin. I had trouble standing up straight for a while because of it.
It eventually became an area of pins and needles which when touched was numb. My surgeon said it was a nerve that had been sewn into the incision. It bothered me for a few years, and then just became something that only bothered me if I focused on it or when I am tired or not 100% well.
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I am so relieved reading all of your posts. I was newly diagnosed two weeks ago and continue to have additional biopsies to decide extent of surgery. It is looking more and more like it will be a mastectomy. I really, really want no part of reconstruction for many reasons and am reassured that I am not alone. The thought of more surgery than needed is something I want no part of. Thanks so much for all of your encouraging words and humor. Did you actually have a flat fest this past summer?? Love and hugs to all of my new friends I hope to meet here. xxx
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Chris, glad you found us. You are definitely not alone! We took different paths to get to this place, but whatever path is the right one for you is the right one for you, if that makes sense. I think the time that you're in now, the testing and waiting right after diagnosis, is the hardest for a lot of us. I know it was for me, even though I didn't have any real question in my mind about what surgery I would have.
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Welcome Chris. Wish we all could have met you under better circumstances. This is a fantastic bunch of ladies. I've learned so much from them and I'm still learning.
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Hi Chris, and welcome!
I agree with outfield that you are in the really hard place right now. It will get easier when all has been decided and you know exactly what's happening.
We all have our own reasons for our choice to go "au naturel", without reconstruction. Some like me, are "Uniboobers" and the others have had Double MX's. Most of us, I believe, are very comfortabe with our choice.
There is a lot of humor on this thread. I don't know about a Flat Fest, but that sounds like a good idea!
Come here often and ask whatever you like, we are all happy to help. Take Care!
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Chris, welcome! Unfortunately the Flat Fest never happened, but there is always the future. Mel doesn't know this, but next time I make it to NY, she and I are going drinking
.As Ariom said, the paths that landed all of us here are varied. For me, I was set to have immediate recon, and it was just assumed that this was the way to go. Then we discovered the extent of the problem and my surgeon asked me to wait two years. This was a blessing in disguise, because it gave me the time to research and think. I do not (NOT, not, not) enjoy surgery. The idea of implants, i.e. foreign objects in my body, does not jazz me one bit, nor does butchering other parts of my body for the sake of odd-looking boobs. I am not impressed with the esthetic result of recon for women with my stage and treatment profile. Many women are happy with the recon because it makes them look "normal" in clothes, even if it doesn't look so hot with no clothes. I can understand that. But I can accomplish the same thing by sticking foobs under my clothes.
At this point, I really doubt I will ever have recon. It would only be if they came up with some easy and fabulous method that yielded spectacular results, and I don't see that as very likely.
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Soltice- hey fellow Ottawa person! So with me I had unilateral msx in 2010 and 2012 did recon, which failed miserabley. I had dr Lorimer at the general" he doesn't use drains,
I had surgery 2 days ago and I can feel and hear the fluid underneath. My next apt is on Wednesday to get drained, and have stitches removed. He had to use stitches due to the scar the previous ps left when he gave me a lift on that side.
Is there anything you can do to get the body to reabsorb the fluid, or do I just wait it out until Wednesday. It's not really painful, just annoying.0 -
Hi Red,
Wow - no drains? I've never heard of that. I had drains and thank god cause they drained a LOT of fluid. They're uncomfortable but not painful. Anyway - After my last operation I had my drain removed a little too early and the fluid started building up pretty fast under my skin. I went to see my surgeon and he explained that this fluid is different then swelling when you bruise yourself - this lymphatic fluid has to be reabsorbed by the body and its quite a slow process. He didn't want to drain it with a needle because he was afraid to cause further tissue damage and infection. It took a couple of months but it finally went. I found gentle massage (downwards) and cool packs helped somewhat. Keeping in mind that I've had massive amounts of radiation therefore I now have a compromised immune system. So my body heals much slower.
Funny how doctors do things differently. My mastectomy in 2010 was closed up with metal staples - that was hell. The one I had in Oct/12 used disolvable sutures - that was a dream compared to the staples.
I'm sure you'll feel much relief after Wednesday. I react badly to drugs so I used herbal remedies to rebuild faster. I wish there was a magic potion to make it all go away - but I'm afraid its time, patience, and most of all, taking good care of yourself that helps you heal faster.
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I only had drains for 4 days. In Greece, they do not send you home with drains, so the drains come out before you leave the hospital. I did have some fluid accumulate on one side, but it went away on its own in about a week.
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I am in the same "mind set" as momine . . . IF some procedure (PAIN-LESS procedure) came out in the future that afforded us "normal" looking boobs, I "MIGHT" think about it. . . at my age, though, after having lost all sensation, that would be a real consideration - right now, PAIN + NO SENSATION = NO RECON.
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Fern, I like your succint summing up, lol "PAIN + NO SENSATION = NO RECON"
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I'm with you, Momine and Fern--it would have to be a pretty incredible procedure, which carried a guarantee of no pain, for me to have reconstruction. Can't imagine that happening.
Several years ago, I looked into the fat grafting method being used by Dr. Khouri in Miami. I even went for a consult with him. Because of BreastFree.org, I try to keep informed about reconstruction options, but I must admit I was a little bit interested for myself. My DH used to jokingly say that I should only ever consider reconstruction if they figured out how to grow new breasts (out of harmless tissue). Then I read about Dr. Khouri's technique, which sounded sort of like growing new breasts, so I wanted to check it out.
Dr. Khouri told me I would have to wear suction cups (called BRAVA) for ten hours per day for extended periods to prepare my chest for fat injections using fat obtained via liposuction. Several liposuction procedures would have been necessary (I'm quite thin, but he assured me he could find enough fat), each requiring general anesthesia. That just about nixed it right there for me, but the clincher came when I tried the BRAVA cups (in his office) for about ten minutes. They hurt! Afterwards, the radiated side of my chest was achey-sore for several days. Can't imagine what I would have felt like after ten hours. I found myself once again feeling glad I'd chosen not to have reconstruction.
Best part of the story was when, a couple of weeks later I mentioned to my son, who's in his twenties, that I had considered the fat grafting technique. He looked at me as though I'd totally lost my mind and asked, "Why would you ever do that to yourself?" He and my other son have been totally supportive of no recon from day one, as has DH.
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How long did it take for you ladies to feel comfortable with how you look? Was it a difficult decision for you to not reconstruct?
I had a BMX, with immediate TE placement in anticipation of reconstruction, last September. Turns out I needed rads, and now knowing the complications that can occur with reconstruction after rads, I'm not sure if I want to continue on that path or not. But, and I ask your forgiveness if I offend anyone as that is not my intention, the look of a not reconstructed chest is rather upsetting to me. But the possibility of infection, contracture, and repeat surgeries is not very appealing to me either. I'd like this journey to be over and done with, and right now, I just don't know which direction to go. Because of rads, I can't have surgery till about August anyway, but this is constantly on my mind. I've hd 2 PS tell me I wouldn't be happy without reconstruction, but it's easy for them to say. DH thinks I should at try reconstruction. I know the decision is ultimately mine to make, and I want to be as informed as possible.
Thanks for listening!0 -
Right on Fern. I love that equation.
Hi Andrea, from the beginning I had no problem with my flat look but that was due to always saying if I did have cancer I would want BMX and would go flat, not realizing at the time so many others felt the same way. I did do my research before my surgery to make sure this was truly what I wanted and what I read and what I saw just reinforced my feelings about going flat. I was very lucky that DH was behind me 100%. Just remember whatever decision you make is the right decision for you. It isn't easy. Good luck with your choice.
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