All things bras & prosthesis
Comments
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Thank you ladies...you give me hope...knowing that I just need to let some time go by is very encouraging...(((hugs)))
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Barbie, You might consider doing yoga. The chest-opening poses might be helpful in gently stretching the tight tissue from the outside. And the deep breathing can help stretch from the inside. The other thing I can think of is you might ask your doctor about scar massage. I had some tightness early on, and those things helped me. Best to you.
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I had physical therapy after treatments because of general muscle atrophy from a bad reaction to chemo..but my PT used a little pulley that attached at the top of the door frame then had a little rope with handles attached. I sat in a chair and pulled alternatelly up and down and with various other positions..it really made a difference in stretching all my chest...including the mastectomy scar..as to fitting bras and prosthesis, I get fitted at a local mastectomy shop so I can try them all on...
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Thanks - My BS never even told me to stretch....ugg!!! But I will ask her.
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Barbie, definitely stretch. The best thing would be to see a PT who specializes in this surgery. But you can also try the ones in this pamphlet (that someone else kindly posted in a another thread)
Try to do some stretches every day, especially the one where you walk your fingers up a wall, and some kind of rolling or shrugging of the shoulders. If possible try to do some stretches several times during the day.
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Thanks....I am doing those walking up the wall stretching...thanks Momine for the thread!!!
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good for you barbie. bs did tell me to those, as did LE therapist. they also wanted me to put my hands up behind my neck, to open up the chest muscles. told me to do that one as much as possible during the day, if sitting there watching tv or such. seems like we all get several different directions along the way.
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I had a wrist (scaphoid) fracture at the time of the BMX (suspected but not confirmed until a month later) so PT was not an option. I was sent home and totally left to my own devices except for one exercise. The one exercise my BS gave me was to stand in a doorway with upper arm parallel to the ground and the forearm flat and palm flat against the door jam. Slowly and gently rotate the body away from the door jam as far as you can comfortably. Then hold and breathe until the muscles relax. Repeat on the other side. This is all done slowly, calmly and gently. Do not bounce or overstrain. If the muscles will not relax in that position you are overstraining.
Totally off the subject, but did any medical personnel tell you not to have needle sticks or blood pressures taken on the node removal side? I thought the sign in the hospital was because of the injured/broken wrist. No one said boo to me for probably at least a year, so of course, ALL of my BP's and blood draws were on the node removal side.
Barbara
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yes, when any nodes are removed you're not to have any blood pressure or needles on that side.
another exercise was to stand in the doorway with arm at about 120deg with the top of hand against the doorjam. press the hand against the jam for about 10secs and relax for 10, then do again. supposed to do this several times daily.
i'm not a medical professional in any way shape for form...just sharing what I was told by BS and LE therapist.
it would be a good ide for you check out the Lymphedema section for more input and information
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So, I guess the tightness is a temporary thing & eventually you feel 'normal' again?...
Regarding node removal & not having BP & blood taken on that side- its a pain but remember not to let anyone do it. LE can show up years later! I learnt the hard way- I got quite blase about it all becos after 7 years I'd had no problems. But had a fright at the end of last year when after a day of carrying buckets of water etc with my at risk arm I got mild LE- aching, tingling, numbness and mild swelling- that took a month to go away!
Talk about a kick in the pants to take it more seriously!
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Was told by the LE therapist to wear the sleeve and gloves/gauntlets on both sides when flying too, btw. There's a thread on the Lymphedema topic section that debates that one.
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My BS never said anything about BP monitoring or needles - I had just the sentinel nodes removed - one on each side = no lymph nodes taken out...still I should not have BP taken...I just did it last week...I have to call my BS now...don't they tell you anything???
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Barbie, the risk is much lower with only sentinal nodes taken, but still 6-10%. It's probably best to warn people away from that side. For my second surgery, the anesthesist started to put the BP cuff on the surgery side. I couldn't believe it. I'm planning to get a bracelet to warn medical people away and to list my allergies.
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Yes barbie. Any node removal put one at some level of risk. Even though there were only two nodes removed on the left side, LE therapist deem I have mild Lymphedema on the left bicep and moderate at the outer edge of the mammary fold in the trunk area. Wearing sleeve and glove for a month and seeing her for a month of therapy.
I am one of those that tends to get the conditions one doesn't expect though, like Arthritis at age 22 without it being truly RA, Gall Bladder problem younger than Surgeon usually saw in his patients, etc. Your mileage may vary.
The NPs of my Breast Clinic at had hot pink gummy bracelets made up that say on one part of it "Lympedema Alert - Left" and the other part says "No BP/No Needles". They had these made up specific to help protect their patients. Now, I don't intend to wear that one forever. Instead, I'll order one. I've seen some medic alert bracelets that are nicely beaded too. That way your odds of being protected are better than withou, in case you are unable to speak.
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Wren, I just had surgery and told them that in addition to established LE on the cancer side, I also had the stirrings of a problem on the side where they only took the sentinel. They put the starter IV on my foot, the main one near my clavicle and put the BP monitor they use during surgery (which measures every minute or so, so repeated pressure over a fairly long period) on my ankle.
The nurses did take BP on the sentinel side a few times, but I told them at admission to keep to an absolute minimum, and they did.
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KT: In my case I wouldn't go so far as to say it has ever become "normal" and at this point am suspicious it never will entirely. There is a little bit of the pressure left, mostly for me, right where the chest meets the underarm though what I have now is more like white noise. Understand that what is left is very tolerable and nothing at all like it was in the first 6 months. I sleep on my side and find it is actually "normal" when lying down and sleeping.
Wearing prosthetics has been an interesting experience for me. I actually have far fewer issues from the nerve damage on the proph side than before. I used to have to warn co-workers why I would suddenly be grabbing my chest to calm the sensation. I have heard it said that perhaps it is because the forms act as feedback to the nerves. I am likening it to when you lay your hand on an area that is making you crazy and either use a little pressure or gentle rubbing to calm it. I first noticed improvement when wearing a silicone pad after The Mutant removal. I think also improved because some of the worst scar tissue was released in the surgery. Then gradual worsening when the pad was removed and I went back to flat full time, followed by improvement when I started wearing forms. Whatever the reason, I am just happy it is better. We have a couple of new employees in our dept. at work and between wearing forms and no longer grabbing at my chest, I doubt that they have any idea about the BMX. Because I feel better with forms than without, I have been wearing them all the time. May be an interesting experience if/when I have a formless day.
Barbara
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After our latest discussion on feeling - I thought you all might find this new thread interesting.
Regaining Sensation After MX Without Reconstruction
http://community.breastcancer.org/forum/82/topic/783930
Barbara
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So I called my BS and was told that it is not a problem taking bp or needles if it were just the sentinel nodes removed...I had one sentinel node removed on both left and right side. They said only if you have 4 or more nodes removed. Do these drs. know what they are talking about? I was suppose to have a Vit C. IV drip done by my holistic dr. - I am reconsidering doing this....will just take Vit C orally. Your comments??? P.S. Sorry but I trust you gals more than my BS.
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Barbiecorn, I would not take that risk. Go read on the LE forums on here. There are some who have LE with only one node removed. While I was still in treatment, a lady came in with major swelling because of a bite on her surgery arm she had no nodes removed. The surgery in itself can cause us to be predispose for LE. I had no idea a hysterectomy would cause be to have it in my legs. I would still have done it but I would have at least watch out for it.
I guess what I should say is there are a lot of Dr.'s that don't believe in LE. Your Dr. is sounding like one of those people. I only had 5 nodes but my Dr. said he knew I would get it just because I had too many other things going on that just predisposed me for it. LE can show up years down the road even. Just a lumpectomy puts you at risk. You have lymph vessels all over your body.
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KT1966 Yes, I have that tightness too. 23 months for the one side, 4 months for the other side. It is no where near as intense as the first weeks afterwards, but I do feel it.
Barbiecorn, It is my understanding that even with one lymph node removed we become susceptible to lymphedema. Look at the lymphedema discussion boards, there are quite a few women told they couldn't get it, and they did. Prevention is the best method to control this.
Starak, I didn't realize we had so much in common, you seem so well adjusted i assumed you had your mastectomy years and years ago! I still have trouble with long car rides and the scars hurting, or tightness coming back. Such as a 6 hour car ride leaves me pretty miserable. And I do stretch, move, wear my compression sleeve and gauntlet...I do not wear my foobs for travel, and still i hurt.
Kittydog, my therapist told me to treat my maastectomy side where no lymph nodes were removed, because yes, a mastectomy with no lymph nodes removed can cause lymphedema. The way she explained it is some women are born with fantastic lymph systems, like 12 lane highways, and some of us are born with a dirt bike trail for lymph to travel. We never know until we have a surgery that disrupts the lymph flow.
Someone else asked the question is foobs ride up in a bra, mine sure do! And that darn bra ends up in my incision. So I am still searching for comfortable cami's that do not have an elastic band.
And my last question, what does everyone wear to sleep? Long sleeved nightgowns are hurting me. Short sleeved is the answer, but then I am so cold.
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crystalphm, I'm over five years out and I still have to stretch to avoid that tight feeling. It's nowhere near as bad as it was in the first year though. I have found sleeping in very soft long sleeve T-shirts and pajama pants to be the most comfortable for me.
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Thank you Kitty and Crystal - you see I said I trust you gals more than the doctors...ugg!!!! - I am not doing that Vitamin C IV drip - that's for sure - I am so glad I spoke with you before I went for that...how should blood pressure be taken? and what about needles in your arms? What if I had to have an IV at some point - where would they put it?? (((hugs)))
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Thanks crystalphm, for answering if foobs ride up. I'm waiting for a cami to arrive in the mail that I hope will be comfy. I'm 2.5 weeks out of 2nd mx (prophy this time) and hoping it will fit and feel good w/lightweight foobs. Anyone have any suggestions to prevent the roving foobs?
Hugs, Patti
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Crystal, even when I had boobs, my bras would ride up and I hate that feeling. So far, I have stuck to mastectomy bras with wide bands at the bottom, and to my surprise they seem to stay put. The only problem is that I have swelling in the armpit/back below the incision, and wearing a bra makes it worse, so I am also investigating cami options.
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I can see the fitters rolling their eyes out there but here is what I found works for me regarding bras riding up.
I used to be huge before BMX. Now I have lightweight foobs in size 6. First I have to consciously remind myself that I no longer have to pull down the back to support the weight. In general choosing bras with a bit wider band than a narrow one helps. I raise the back to make sure it is simply level, and lengthen the straps as far as I can without it gapping too bad when I lean over. The lengthening the straps is a balancing act. This is the part that will make fitters crazy because they want them to be alot tighter which will cause ride-up. Then I almost act as if I am exercising. Reach as high as I can over my head, touch my toes, swing my arms back and forth as far as I can. Basically push the limits. If everything stays in place, it's a keeper.
Barbara
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Would love to hear reports back on the cami's purchased and how they work and what they are.
I too have the "fluff" under my one arm which makes wearing most bras uncomfortable.
Barbara, I hear you, you have to really try different positions when trying on a new bra to see what it is going to do. Unfortunately most feel ok the first few hours, then start causing discomfort or pain.
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Well, I got my new prosthesis in the mail today. So far I don't notice the bumps (on the amoena energy form) but its not terribly humid today so I can't tell if its cooler than my old form. It certainly is a firmer style than my amoena light so it feels quite different. Anyway, so far so good
At half the price of forms in NZ it certainly is cheaper than buying here...
Regarding tightness across the chest with BMX, I've had UMX and my MX side feels pretty normal as far as tightness goes- but my ribs do have some changes due to radiation and feel permanently bruised especially if something is pressing on them.
I'm hoping if I ever do have a prophy MX on the otherside the tightness will be short lived, and only on that side & not having radiation will mean that that side will be less sore anyway...
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KT - I am soooo glad to hear your Energy forms seem like they are going to work out for you.
It is hard enough to think about returning anything nevermind to a different country so always a good thing when it works out. Please keep us posted after you have had them awhile. You mentioned you have other Amoena forms. Would you please give a little more detail about the previous form (the identifying number would be great) and the differences between the two forms. Not only feel but weight, footprint etc.Crystalphm: The other thing I have discovered for myself is there are just some days that nothing but nothing works. On the other end of the spectrum, I have tried on things I dismissed but when I went back and tried them again with fresh eyes, they worked. I imagine the body adjusts over time also so that may be a factor. There are of course those things that never work, the first, middle, or last time you try them.
Barbara
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Hi Barbara.
My previous form was Amoena essential light 2S- its very soft and squishy compared to my new Amoena energy light 3U- both size 5.
I went for the 3U rather than the 2U because since starting on zoladex & letrazole my remaining boob seems fuller- the new form is firmer and a totally different footprint (old was triangular- new one is more of a teardrop shape) and gives a little more fullness higher up the chest (you can wear it different ways depending on where you need it).
Although it seems comfortable enough I still prefer going bra & form free at home
I just have to watch out for unexpected visitors! Luckily our neighbours aren't too close (we live on 6 acres). 0 -
I tried some of these while form shopping. The "U" stands for universal and it can be used in a couple different positions. It sort of replaces or supplements the "A" (asymmetric) forms as it can be used as a right or left side asymmetric form.
I tried that in the Energy line and it was an interesting product. Comparing the 2s comforte light + (average fullness, symmetrical shape) to the 2U Energy, I felt the 2U energy was definitely firmer and had more fullness at the upper pole. They didn't have any 3 forms, which would be even fuller. I would like to try those style 3 forms which are the "full" shape.
Glad you are enjoying them - bet it looks great!0
