I look for other flat chested women. A rant.
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It is all unnerving, I feel my body doesn't play by the same rules anymore. it could just be winter dry skin, or shingles like suggested. Rashes could be for a hundred small reasons...
I am keeping a good thought for you...let us know.
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Dear MT1,
Hopefully it is not shingles but the headache and sleeping made me think of a viral condition. I don't know if the radiation is a factor but it might be. There are medications that can help especially if you start them early. Is there anyone you know who could take a look before Monday, just in case? Hope you feel better soon. Dawn0 -
The itching, nerve pain, and area (from back to front) all sound like shingles. Stress is a major cause of shingles onset, and you have had plenty of stress lately. Thinking of you and hoping you get good answers soon.
Dawn (another one)0 -
MT1, if you DO have shingles, getting treated ASAP will help reduce long-term pain issues, and delaying treatment can increase chances of persistent pain. Call your doc or whoever is on call, you need to be seen!!!!
I think I am especially empathetic with all of you who are having pain issues right now - having a few bad days after having a few good ones. PT has been helping, but after a year of dealing with the misery on the back of my ALND arm I finally saw an interventional pain specialist and then did some more reading and research. I am scheduled for some kind of ultrasound-guided injection next week - she seemed to think there is a good chance that will give me a lot of relief. I am hopeful. In case any of you are interested, there is a really interesting web site on post-mastectomy pain issues by one of those surgeons who actually seems to be listening to and learning from his patients:
http://www.cancerlynx.com/mastectomypain.html
I will check Mel's site to see the new artwork. I went to a professional educational meeting a couple weeks ago on art therapy (I am NOT an art therapist, but was interested in the topic) and found it extremely interesting. I didn't realize how much counseling is involved once a person has created art during a therapy session, so it isn't just about the art, but about how one feels about it, and what one can do to feel better about the artwork. We did a little hands-on exercise, and I discovered that my first art did NOT make me feel good, but I was able to identify things that would make it feel better, such as softening some lines, blending some of the harsher colors, bringing a little more harmony to the overall piece. So working through the creative process can really help to focus on "being in the moment" and then kind of coming to some understanding or resolution.
IMHO, those energy drinks should be banned to begin with, and the pink lemonade one ought to be used as an enema for the idiot that created it. And Avon should be ashamed to accept funds from them (I don't know what Avon does with their fundraising anyway, but that's another issue....).
Hoping all of you have a good weekend.
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Ladies,
I hesitate to bring this up because it sounds kind of trite in the scheme of things but it's bothering me so here goes . I have decided I feel comfortable flat- its been two and a half weeks since BMX- and I have yet to feel " lacking" so I am not going to purchase bras and prothesis etc. just because I have insurance right now. Only thing is that one side has a ridge, like a mini boob and the other side ( big C side) is totally flat! I don't understand why it looks that way- I was hoping to match. Can anything be done later to fix it? What causes this? If this is not the correct forum for this, I apologize in advance- Dawn0 -
MT1, I'm crossing my fingers and praying that shingles is not what's going on with you. Hope you feel better soon.
Dawn 7, Your feelings about living flat and the concern about how it looks are both that I've been having. What's been said to me is that time (up to a year) is needed before we'll see the final results. Go back to Nov 9th in this thread to see my post and then some feedback after that.
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Hi Dawn, I have a puff on each side so it sorta looks like cleavage, but the rest of the breast is missing. There is also a ridge at the bottom of where the breast would have been, and I am not sure why. My sides do differ, the cancer side seems to have more missing, and it hurts more.
You are very recent with your surgery, ask your doctor when you see them, and absolutely things change as they heal.
Congrats on feeling secure being flat! me too. I do admit to having fun with elegant scarves. You are wise to wait for buying boobs and bras, first of all you are too soon out and they will hurt. Secondly, you may change your mind over and over as to what you want, so just move forward until you feel better and then have the chance to try stuff on.
But that said, I have a 'collection" of breast forms, I wear only the TLC microbead forms which are feather weight, when i wear them.
Your concerns are very real and very important! It is about you, needing support, wanting to feel fantastic again. me too.
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MT1 - about four weeks ago I developed a rash just along my MX scar, it was growing slowly, but didn't wrap around. My MO sent me to a dermatologist immediately, to rule out skin mets, and to figure out what it was. They did swabs to test for Shingles and herpes simplex virus, and they did two punch biopsies. The results came back as radiation recall dermatitis, which is most commonly caused by changing meds, but stress, or ???? can also trigger it. It was kind if itchy and prickely feeling (but I don't have much feeling there, so hard to tell). Anyway they prescribed a steroid cream and it started healing immediately. If it were a herpes or shingles thing they were going to put me on anti-viral meds. There is a small catch though, my LE started acting up on the way home from the punch biopsy and I'm still trying to get it back under control (can you imagine what havoc reconstruction would cause?) and when they took the stitches out the biopsies popped open, they hadn't even started to heal. I was given the option to have them stitched back up, but chose to let them heal from the inside out instead, it's taking forever.
I don't want to scare you, alll in all it wasn't bad, but watch for side effects if you have a biopsy done. They said it will probably take much longer to heal because of the scar tissue and radiation damage. But on the bright side, the rash is gone
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Dear Granellie and Cyrstalphm,
Thank you for your responses and good advice. I really appreciate it. I am not scheduled to see my surgeon again but at this point sounds like I need to see how things look this time next year anyway. I guess I was just surprised. My surgeon
was not a great communicator! Of course, not having cancer now or hopefully not in the future is the important thing- I guess I must be a little vain. Sometimes everything still seems surreal- it was only about two months ago when I got the mammogram callback... Sometimes I forget I don't have breasts until I reach up for something, then Owww! I'm really lucky that I feel I look okay without them though and my husband has been supportive in this regard. Oh- Granellie- I ordered some of those jockey camisoles- thanks!0 -
Mel, I hope you can get the rash checked pronto, so you don't have to worry.
Dawn, I think your concern and questions are totally legit. We may be titless, but that doesn't mean we can't be vain or that we shouldn't be.
My surgery was in September '11, so more than a year ago. I finished rads in February of this year, so about 9 months ago. At first the chest looked as if Dr. Frankenstein had butchered me. Then after the rads, it looked liked Dr. Frankenstein had been there and then had it fried as well, just got for good measure. Just the other day, I noticed how much the rad burn had healed, and what bumps and lumps there were at the beginning seem to have smoothed out. It doesn't look splendid or anything, but it looks way, way better than it did the first 6 months.
What has surprised me with this surgery is both that it wasn't as bad as I imagined, in terms of pain and recovery, but then also that the recovery is very, very, very long. It seems like a ridiculously slow process and it can get to be frustrating at times.
By the way, the docs keep asking if I want recon, nicely not pushy, and when I thought it through, I realized that if I ever were to go under the knife for cosmetics, it would not be to get boobs, but rather to get them to remove the loose skin on my stomach that my pregnancy with dd left behind. I am pretty sure it could be done with a mini-tuck, i.e. only cutting skin, no messing with muscles and the like. Just to say that you bet I am vain, and as long as I don't go overboard, I don't see the problem.
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Okay, just a thought here. Insurance usually pays for re-construction. Therefore, given what we go through with BC, I think if we choose not to have re-construction for whatever our personal reasons, the insurance companies should be nice enough to let us choose another procedure, such as facelift, eyelift, tummy tuck, etc. that would make us feel better.
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Ha! Marya, like the way you think, lol.
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Ladies,
How about a CASH rebate? Woo-wee!0 -
Another thought- the money not used should be donated per insurance to fund breast cancer research or to pay for treatments for those in need. :0)
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Linda-n3 -- What an interesting and informative article. One hears about different procedures performed at pain clinics, but this article gives a better understanding of why certain procedures work on some and not others. That this surgeon is interested in preventing this kind of pain from the outset is wonderful. As per the injection treatment, a concern I would have is that it could pose a risk for lymphedema. Needles, IVs, punctures, etc are best avoided in a quadrant of your body where nodes were taken. Since I have LE, all I can say is that you do not want it! However, as a quality of life issue, I can understand wanting relief. I would ask how many injections would be required.
Regarding the emotional element as part of the pain cycle, I can totally relate. The cause of my pain was not related to issues he mentions but I definitely became depressed after a certain point of living with chronic pain. I went to my primary and told her I was "going down" and caving as far as my ability to cope long term. I was prescribed an antidepressant and found it very helpful. Participating in several group therapies at my hospital enabled me to talk about my pain and have it acknowledged, which in itself was beneficial. Pain can be such an isolating thing.
Linda, your post is also terrific because it touches on the use of art therapy. I practically squealed when I read that. My hospital started offering an art therapy group very soon after my mastectomy and expansion/implant surgeries, and I normally wouldn't have participated in that kind of thing (although I loved viewing art). I figured what the heck, and ended up getting so much out of it I went for three years! They stopped funding it this spring and is no longer offered. Anyway, I found the weekly group incredibly helpful in exploring my creative side and began doing projects on my own as a way to cope with pain. That "lost in doing" I experienced as a child, of being in the moment without judging myself, became a source of release, joy, meditation, and definitely a pathway to my feelings and thoughts. I cannot say enough about how this has changed my life. I am not an artist, but I do believe each of us has a creative side which can be nurtured and rediscovered.0 -
Not sure what you all are describing as lumps and bumps. Look for the photo on this page from an old thread. From my viewpoint, the work of a surgeon I would run from. But then I am not a medical person.....
http://community.breastcancer.org/topic_post?forum_id=82&id=695424&page=1
If you have seromas and/or what I felt was a lake on my chest, as the fluid is absorbed they will likely resolve or at least show tremendous improvement. My fluffy stuff under the arms will never be gone but has improved alot, helped along by weight loss and exercise. My BS & her nurse told me to expect it. If you gently grab the fluffy stuff horizontally and then try to raise your arm, you will not be able to do so, which is probably why it is common to lipo them. In my case, when I had The Mutants removed, I chose to leave the fluffy stuff alone for a number of reasons. They had improved alot over time, I already had nerve damage with ongoing symptoms on the right side and did not want to risk exacerbating the situation. Also realized how many lymph nodes and vessels are in the area and did not want to be inviting LE. I started to feel alot better about them too when I noticed the women of the Olympics Swim Teams had much the same thing. Sort of like our tummy, it was there all along, just became far more noticeable without breasts.
If what you are describing is a sort of point or bunching up at the end of an incision, it is likely a dog ear. Often the fluffy stuff under the arm is also described as a dog ear. Some create a point, others a hole. Any of you who sew will see that they are much like the end of a seam that creates a dart. Center dog ears are pretty much that. You will hear a number of explanations from hard to get it flat when you were exceptionally large prior to the MX or often excess skin purposely left to more easily facilitate a recon. Funny how we all react to them and can be a stark reminder of how two people can look at the same thing and come away with totally different reactions. I have heard a number of women here and a fair number of husbands who have a great fondness for the mini boobs as they can give an illusion of cleavage. Men might even like to play with them. I called them The Mutants to bring a touch of humor to something I hated and would eventually decide I could no longer live with. They were "things" that did not belong on any human chest, man, woman, child or teenager. I could not even think of a single animal with anything similar. There was no simply going flat, I had to strap them down with ace bandages or flat sports bras with no center seam. I can and do accept my flat chest with all the scars as an essential part of me. As their name implied, The Mutants were completely alien to me, and I used to fantasize about hacking them off. The constant strapping down and necessity to hide was starting to really weigh on my psyche. The PS, on the other hand, could hardly hold back the laughter, because to a doctor, they were just a couple of no big deal bits of tissue. Like I say just a demonstration of how differently each person can view the same thing. I do still think those who look at them with fondness are probably the mentally healthier.
Trouble with dog ears, they do not forewarn you and photos can be unbelievably difficult to find considering how common they are. For those looking at Diep reconstructions, they are a common leftover for the tummy tuck part of the surgery. I have found it far easier to find photos of tummy tuck dog ears than of mx dog ears. Don't know if they are one of those dirty little secret things or what but you will find them totally lacking from any photos on the boob factory sites. Many PS seem to think that repairing them when not doing a full recon is beneath their dignity and a waste of their artistic talent.
What I am hearing as ridges at the bottom of where the breast used to be is probably the mammary ridge. I am simply guessing here but another thing that becomes noticeable without breasts. Perhaps purposely left when there is any thought of recon as sort of landmarks if you will. It is my impression from my own chest as well as others who were clear about not wanting recon and requesting a result that is aesthetically pleasing as possible, that those ridges can be minimized/eliminated if the surgeon chooses to do so.
Much of the end result seems to have alot to do with the skill of the surgeon. In spite of The Mutants, I had an excellent surgeon who did a beautiful job and the only one I would consider using if ever faced with further surgery.
Barbara
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Tina, that is cool about the art workshop. I don't do art, but I design and make clothing for myself, knitted or sewn. I really like the planning stage, because it has that same "lost in the moment" potential. I have always thought that making stuff was important to humans, including for their psychological well-being. As the Danish proverb says, you can do the work of the mind without the hand, but not that of the hand without the mind.
Starak, I get very cranky when I see pictures like that, especially in light of what I just wrote above. I had little tops where my incisions ended at the sternum. They have since smoothed out. One scar is also still very red, but that is how my body heals, and not my surgeon's fault. I do not have any funny stuff under my arms and no ridges (but my boobs were VERY modest, so maybe that is why). When I got my DX, I was the heaviest I have ever been, but some of that weight dropped off during neo-adjuvant chemo. Maybe that plays a role too.
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I vote for cash rebate!!!
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Wow - that picture was pretty intense - my BS didn't leave anything extra, he was focused on getting good, clear margins, and trying to make it so that I wouldn't have to have skin grafts - after seeing that picture, I think I may have been lucky!
Injections for pain - I had bilateral carpal tunnel surgery, then later had injectionsin my LE hand for pain and degeneration. The thumb joint is gone and was calling a lot of LE and other swelling, after talking to the LE theapist, she felt that the injection was worth a try, and didn't feel that it would make the swelling worse. I went ahead, and the swelling went down quickly. Apparently most of the swelling was from the bad joint.
I would love to do art therapy, I keep thinking that I'd like to water paint, I even bought things to get started. I feel that it would be relaxing, and help me work through some things. But, for some reason, I can't bring myself to start - approach avoidance I guess!
And I'd like to see 1/2 the saving go for those that need a little more cash for their treatment, and the other 1/2 to me in travel vouchers!
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Hi everyone. I have been in and out…here and not here (bco). Trying to catch up on my favorite threads here lately. Stopping by to check in and say HI to you ALL.
MT - hope you see your Dr. soon and that you get relief from the rash!
Linda-n3 - I am jealous! Art Therapy! I think I missed my calling when I didn’t travel down that road as my occupation. Also I hope that you get lots of relief from your pain with the injections.
Tina how great for you to get to participate in Art Therapy for 3 years! I wish I could find something like that near me.
My vote is cash rebate! And I would use some of it for follow up I’m not getting due to lack of funds…
I only had a UMX. If I knew then what I know now…I would have had a BMX. It was not offered or discussed by my surgeon. She did a fabulous job with the incision. Nice and clean no outside stitches, just skin glue. In August I past the 1 year mark. The line is a faint color now. I do still have 2 areas that ‘bug’ me. One is a divit that shows in some shirts with round/scoop necklines. It may be the shape of my bones or it could be she got more tissue from between those ribs than the others??? I live in FL and wear lots of tank tops, but I can not wear some of the pre-bc tops anymore. The second area is a lump/wad of tissue where the arm connects to the trunk. At the end of the incision. I guess the dart/pucker thingy you mentioned earlier. It is annoying, but minor in the scheme of things. It is more of a problem when I am bare-chested. If I am wearing a bra and form it weights the area down and is not as annoying. Most importantly she gave me clean and clear margins!!!
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I would opt for the BMX now too, in fact I'm considering having it done - at three years post UMX.
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My post BMX chest looks better than I thought after seeing that photo- I now see I have very little to be concerned about in comparison. I thought for simple BMX with no desire for reconstruction that everyone would pretty much look the same! Silly, I know. Once again, you all have educated me- thank you. My surgeon did not argue about BMX - I was pretty hysterical about having cancer to be honest so maybe he knew I could'nt deal with the worry.
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Don't get me wrong, I believe we should all have the choice. But I just went to the website for the top breast reconstruction, post cancer, site in the US, in fact after much research, I decided that should I ever have reconstruction that's where I would go. Well I looked at their before/after pictures - though I think they do a wonderful job, they are on top of things like LE. The pictures just reaffirmed my choice to NOT have reconstruction done.
Everyone has told me that my MX scar looks wonderful, from the very beginning, surgeons, MO, RO, OT, PT, MX fitters..... I just smiled and said thanks, but didn't really believe them, I thought they were just being nice. I guess they were telling me the truth! So glad I had the surgeon that I did!
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LindaKR -- So glad the injection worked for you and helped reduce swelling! Oh, happy day! Pain can definitely cause additional swelling in an area of LE. As we know, LE is a condition of inflammation and pain can cause an inflammatory response. It's good your therapist could help sort out that the joint was causing more harm and was as much of a risk as an injection.
Still, it's important to note, especially for someone who does not have LE, that needles, etc in a compromised area can pose a risk for developing LE. One needs to have all the facts when choosing therapies, and most doctors don't know diddly about LE. I don't want to sound like a negative Nellie, but LE truly sucks and everyone should be properly informed. This discussion is a good time as any to share this info - before anyone needs it. Oh, and Linda-n3, I certainly don't want you to think I am trying to dissuade you from pursuing therapy! You deserve to be as free of pain as possible.
I was going to post this link earlier, as everyone here who's had a node removed (SN or ALND) or a mastectomy is at risk for developing LE throughout their entire lives. It's one of BC's dirty little secrets and women often don't receive enough preventive info. There are things to definitely avoid, and they are spelled out clearly on the StepUp-SpeakOut site. If any of you are not familiar with this site, it is an excellent source of accurate and current info about LE. It is also a place to find a qualified therapist in your area should you question if you are experiencing symptoms of LE. The ladies on the LE forum are also a wealth of information, and the SU-SO site was created by several of the woman who post there.
http://www.stepup-speakout.org/riskreduction_for_lymphedema.htm0 -
LindaKr, I did the same thing, went to many websites looking at reconstruction, and I was not pleased with what I saw. I lost my skin to the mastectomy, so I would have to have skin from somewhere, or fat moved over....and I did not like the descriptions of it all. My scars are neat, clean, no bumps, no ridges, just fluffiness under the arm...and after 2 1/2 years I am pretty pain free...it took soooo long...so I just want to keep it this way now.
Dawn, my surgeon never mentioned reconstruction either, it was never presented to me. When my husband asked he responded "Why would anyone ask for more surgery, more procedures, more pain? I too was off the charts with my anxiety...so maybe he felt is was best to not bring it up. I don't know.
Tina, Good for you for posting about LE...you're right, now enough information is given to women about this. my arm was so heavy after the mastectomy, somehow I am sure this means it may be in my future. For now I sleeve and gauntlet for all exercise for precautions...or if it feels heavy, I wear it until that feeling goes away. You certainly do not want to do anything that brings LE as a risk.
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Tina - I think that it's soooo important to talk to your LE therpist before you have anything done on that side. I didn't follow my advice (probably because everything went so fast) when I had the punch biopsy in MX area, so far, 4 weeks out, I'm still having a lot of issues with my LE - luckily I got right in to my LE therapist after, and we're moving ahead with the issue.
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Tina, I am absolutely paranoid about developing LE, and am very vocal about it with every person who even suggests ANY procedure that would increase likelihood of my getting it. The pain doc says is should not be a problem - and I have had punch biopsy that did not cause problems. I was talking to my PT who does research on LE, and she thinks there is a different pattern of lymph drainage for those who get LE and those who do not. It has not been proven yet, but she is working on it. My mother never had any problems, and I am hoping I also have good luck with that. However, she also had no recurrence and has been NED for over 18 years, and I have had local recurrence twice and maybe starting another one (just got back from MO appointment, she found 2 little tiny bumps that are very similar to the one I just had removed, so it's back to the BS again in a few weeks... UGH)
MT1, hoping you are doing well today.
All the thoughts and emotions that many of you have posted over the last couple of days sound so familiar to me. Yesterday was a high-pain day, and in efforts to alleviate it, I was trying the bra plus prostheses to see if I could get some neuro-feedback, but it just aggravated things rather than helping. And I felt UGLY. And crying, feeling sorry for myself, and UGLY. So today I chose one of my favorite soft long-sleeved t-shirts, a pretty skirt, and pretty print vest, and looked pretty good. I love it that things always change!
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Oh - Linda-n3, so sorry about all of your trouble, and I bet you do look very pretty today. I said a prayer for you!
That's actually awesome that you've had no LE!!!!! And hopefully you never will!!!!!
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Dawn7 - my scar and 'dog ear' flap under my arm got much flatter over the past year, so hopefully there will be some change. My surgeon thinks he should be able to match the first one when he does the second one in two weeks. I hope it turns out that way because the first one is really quite smooth. I still have alot of discomfort on the first side, though it is mostly under the arm and around the back, and mostly when I lift things I shouldn't or do too much.
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Dawn,
I'm really flat, no dog ears, not really any puckers. But my left (IDC) side has less tissue than my right. I think it's subtle, so I don't worry about it, but it's very obvious to me. The answer for me was simple - lost my pectoralis sheath and probably a little of the pec itself on that side to get a clear margin. I wish I were totally symmetrical, but my thankfulness for the margin far outweighs any wishing.
Starak, I read about your feeling about the mutants and I immediately thought of my monster-cord. I didn't have terrible range of motion, but every time I raised my arm quickly and felt that yank it was like a car honking at me "Cancer! Cancer! Damaged by CANCER!" I was obsessed with it. It wasn't so much the discomfort or the oddness of how it looked (not too many people going to see my naked armpit with arm upstretched), it was the feeling of being so damaged that I had this thing that was just totally an extra abnormal part and wouldn't somebody just FIX IT. I could kiss the 3rd PS who did my tiny little curative surgery and removed it, except that he has moved to another state.
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