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Chest tightness - post Bilateral Mastectomy

robinlbe
robinlbe Member Posts: 73
edited January 2019 in Surgery - Before, During, and After

I've done a search, and have come up empty handed.....so I'm asking those of you who have had bilateral mastectomies (without reconstruction)......what about chest tightness????

I am now 11 days past my BMX.  Two  (of four) drains were removed three days ago, and the tightness wasn't so bad then (otherwise, I would have asked my doctor).....but since yesterday, the tightness is overwhelming to me.  It feels as if there is an ace bandage surrounding my chest, or I'm wearing a bra that is WAY too small, or a cami that is ten sizes too small. My impulse is to rip it off....but there's nothing to rip off - it's my SKIN! 

I read in Dr. Susan Love's Breast Book that as we heal, the tightness gets worse....but there was nothing mentioned that could be done.  I will literally lose my mind if this continues.  I can not get comfortable.  I can't stand this.  It's making me irritable and crabby.

If you experienced this, what did you do for relief?  How long does this last?  Does it ever get better ???

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Comments

  • Magister105
    Magister105 Member Posts: 18
    edited January 2010

    Robin: I have that same tightness, and it seems to get worse as the day goes on -- not so bad in the morning. I have found that motrin hels a lot. When I lie down, I have one of those bean-filled bags that you can microwave to get hot, and I put that on the area for about 30 minutes. It really helps, especially of you can do the motrin and heat together. It allows me to go to sleep.

  • jenn3
    jenn3 Member Posts: 388
    edited January 2010

    I had a strange tight feeling in my chest after surgery.  I am 6 months out of surgery and at times can still feel a sense of tightness at times - it's no longer painful or even uncomfortable, I'm just very aware it's still there.  Magister's suggestions are good, motrin or aleve with warm compresses may give you some relief.  If you can't get comfortable, call the surgeon just to make sure there isn't more going on.

  • navygirl
    navygirl Member Posts: 369
    edited January 2010

    I'm here to tell you it does get better. I had immediate reconstruction so my situation may be a bit different but I'm sure the healing from the surgery aspect is simiIar. It takes time, massage, time,massage. More time. I think the first 6 months were the worst. Then gradually it got better. Getting back to the gym at the 1 year mark pulled a lot of the scar tissue I still had but ended up loosening it more. I'm almost 2 years out and it's only been since I went back to the gym this summer that I really had things "settle" in and improve. Stretch, massage your whole chest, under arms, shoulders regularly. It makes a huge difference. I promise you, it doesn't last forever. There also are intermittent times of "shooting" pain...almost like little electrical shocks, which I'm told are the nerves regenerating. With each round I got more and more feeling back. 

  • keno41
    keno41 Member Posts: 17
    edited January 2010

    I had my bilateral in August and still have a small amount of tightness. It doesn't hurt, it's just tight. Some days I'm more aware of it than others, maybe if I'm more active. I also get those nerve regenerating pains and  "phantom" itching, which drives me crazy because there's nothing to scratch.

  • chainsawz
    chainsawz Member Posts: 113
    edited January 2010

    I had a bmx without reconstruction 09/08 and I could not believe how tight my chest felt for the first month - it drove me crazy!  I used pain meds during the day because I just couldn't stand it.  I also searched online and couldn't find any answers :<  I can tell you that it will get better - just hang in there!! I still get the feeling, but maybe for a few hours here and there and it doesn't last very long.  Nothing like that first month! 

    I also had "phantom" itching and pain.  I did some research and discovered it helps to train your brain to know the breasts are no longer there.  Each day, I stood in front of a mirror and put my hands on my scars.  After a few days, my phantom pain stopped.  

    I really wish my surgeon had prepared me for the tightness, amount of numbness and how to alleviate the phantom pain.  Best of luck to you!!!  

  • cammy2
    cammy2 Member Posts: 2
    edited January 2010

    I had a bi-lat mastectomy on Nov 20th and have not yet had recon.  It still feels very tight - even around the back- which seems to make no sense.  I got in the shower and jumped back out because I thought I had forgotten to take my bra off - but realized the tightness was there even with nothing on.  My doc said to be very careful about massaging too early after surgery as you can create fluid build up- so she told me to wait on that.  Warm showers are good and the microwave seed pillows help relieve some discomfort. Good luck.

  • victoriasecret
    victoriasecret Member Posts: 37
    edited January 2010

    I had my surgery July 31st and yes I still feel a tightness almost like a rope around my chest...now that I think about it it is not as tight as before ..I agree it gets tighter at night ..

    ml Cheryl

  • glovie2
    glovie2 Member Posts: 1
    edited January 2010

    If you had a lot of skin removed (and especially if you tend to have little muscle or fat in the chest/back area) as I did with my bmx you will probably have more tightness, and yes, it actually got worse for me a week to ten days after the surgery; in fact, I woke with a panic attack (which I have never had before or since) in the night feeling that I couldn't expand my chest enough to breathe; my heart was pounding and racing.  It subsided in a couple of hours.  Seven months later it is still uncomfortably tight and soreness persists on the side where more of my nodes were removed.  This is the major reason I am not considering reconstruction.

  • Ezscriiibe
    Ezscriiibe Member Posts: 139
    edited January 2010

    Wow. This is one thing I haven't heard about before. I'm still in the process of deciding if I want to stay with a lumpectomy or move forward with a bi-lateral.

    I'm trying to capture all the issues/concerns/etc with the healing process to help me weigh my feelings on the matter (in other words, is my fear of cancer stronger than my fear of the potential issues/concerns with post-op of a bi-lateral. I'm pretty sure I won't have any emotional issues with breast loss. It's the physical pain and difficulty in the recovery that gives me pause.)

  • chasinghope
    chasinghope Member Posts: 17
    edited July 2010
    Hi, I had a bilateral masectomy (No reconstruction) I am so happy with the results. I know it was the right thing to do and the pain is not as great as you would think. They cut nerves while you are out. I had no reconstruction and would never go down that road. I will be upfront and honest with you, I have heard ALOT of horror stories about foobies, reconstruction, etc, etc. Also it's a life of MRI's, that's right, no more mammograms, and MRI's are expensive. My goal for myself is to GET THE CANCER OUT and not willingly put any foreign liqiuds in my body, nothing that good break, bust, rupture, then put me at more danger?I ask you, why, what for?  I can understand if I woman needs that to feel womanly but I sure as hell am not doing it to make other people feel comfortable around my flat chest. I got the  cancer out of me ((hopefully)) yep, I'm flat, too bad, deal with it, that's how I look a it, good luck whatever you decide.
  • lisa-e
    lisa-e Member Posts: 169
    edited January 2010

    I had a bilateral mastectomy without reconstruction in September 2008. My chest still feels tight; it is not painful, just a sensation of tightness and awareness of the scars. I have full range of motion, so I think the tightness is related to scar tissue and disrupted nerves. Stretching helps.



    Ezscriiibe, I think are being wise to think long and hard about having a bilateral mastectomy. I had to have mine as I wound up being dx with multicentric cancer, it was the only surgical option. I originally had a lumpectomy and really wish that was all the surgery required to treat my bc as I miss having breasts.

  • robinlbe
    robinlbe Member Posts: 73
    edited January 2010

    I called my surgeon's office yesterday and talked with one of the nurses.  I had run out of my pain meds, and thought that, because I had, that I should no longer be needing the pain medication.  Well, after telling the nurse how absolutely miserable I was, and when she found out I hadn't been taking pain meds (because I was out), she told me I certainly did need to be still taking them!  I was so relieved :)  My husband ran right over to their office to pick up the new script, and we had it filled last night.  It's amazing how much of an edge just one pill takes off the tightness.  It's not all gone, but it helps so much.  I talked to one of the other nurses, too, and she said that because the weather changed, and the barameter changed, that TOO caused my skin to tighten, making me even more uncomfortable.

    And, yes, glovie2, I didn't have extra skin to spare...my BS said I'm not a "fluffy" person, which causes me to be extra tight I guess....and so there's not enough extra space even for these drain tubes!!  Fortunately, I got two (of the four) taken out last week, and HOPEFULLY get the remaining two out in two days.

     Lisa, Like you, I didn't have a choice in the mastectomy.  Because my cancer was multifocal, the whole thing had to go.  If it had been unifocal, I could have opted for a lumpectomy and rads, but I didn't get the choice. 

    And I didn't opt for reconstruction - I couldn't quite get past the idea of having alloderm (cadaver material) in my body along with a foreign substance, and I wasn't a candidate for TRAM (only enough tummy for one breast, not two), and no one does DIEP around here (and even if they did, because I was burned when I was a toddler, I have a terrible scar on my rear)....AND I am sick of surgeries!!!!!   Besides, it's kind of like buying a car - the more stuff on it, the more that can go wrong.

    Magister - thanks for the idea of your bean-bag-warming idea.  I have a bag made of cherry pits.  We did warm that up and laid it across my chest, and that helped a little bit.  (btw, do you teach Latin??  My daughter, a third yr Latin student was interested, due to your name...)

    Hope all are doing well...praying for all of us...

    will share more tips, if and when I discover any more :)

  • robinlbe
    robinlbe Member Posts: 73
    edited January 2010

    oops....barometer....

  • precioustime
    precioustime Member Posts: 26
    edited January 2010

    I am 5 weeks post op BMX with rt. axilla dissection.  At my 2 week  post op appointment with the Surgeon, I also told him of the tightness in my chest-- felt like it was difficult to take a deep breath and like wearing a steel bra that I couldn't remove!!!   I was sent to PT to get fitted for a Sleeve because of possible Lymphedema and was told that it was important to Stretch and Massage the chest area because the scar tissue was adhering to the chest muscles.  I have been doing daily "easy stretches" and lite massaging up and down over chest area and at 5 weeks post op have less tightening.

  • musiclovermom
    musiclovermom Member Posts: 245
    edited January 2010

    Hi Ladies!

    I just want to add that I asked my plastic surgeon if I could have a massage and he approved it. I am doing the reconstruction, I have that same tightness when the weather changes.

    I was amazed at how much better I felt after the massage. I had a consult with the therapist, then asked my PS, then had the massage and as soon as I sat in my car and turned my head to put my seat belt on, I could feel the difference.

    I had been walking around for 3 months feeling like someone had punched me in the sternum. A lot of women post that they got physical therapy, but my range of motion doesn't call for physical therapy. I am very happy with the massage. I have to think she did deep tissue. I was on my back for most of it and she was able to get my shoulder blades loosened up that way too.

    If I had the chance to do it over, I would have gotten weekly massages as soon as I could have! I am sure it would have sped up my process.

    One thing I do to stretch my chest is stand in a door way and place my arms on the frame. I then lean forward to pull open my pects. This has been the only way I have found to stretch enough. It was a modification on the one from the American Cancer Society that shows CHEST WALL STRETCH facing the corner... all of my corners have stuff in them.

    I hope you all find relief from this tightness.

    Kimberly

  • kw212
    kw212 Member Posts: 4
    edited January 2010

    I am just 5 days out from BLM + RT Axillary dissection (haven't learned all the abbreviations yet Smile) and I have the same tightness, combined with numbness. Deep breathing seems to help me, as it expands the whole chest area without pulling on the skin or incision. (Plus it's relaxing psychologically.) Also just touching the area, for some reason. How soon did you all start excercises or massage? My instructions say to wait until the drains are out... so another week or so?

    Kathy 

  • precioustime
    precioustime Member Posts: 26
    edited February 2010

    KW- I went to PT 5 weeks post BMX to get fitted for a lymphedema sleeve. 

    The PT told me to do a lite massage up and down the incision area that this will help loosen the scar tissue.  Since then I have done a very lite massage as well as lymphedema massage and have felt less tightening in the chest area. 

    I heard that if you touch the area while looking in the mirror it will help your brain to know that your breasts are actually gone and will help prevent phantom pain?

    I'm guessing your drains are out by now:)  CONGRATS!   Hang in there and take it easy-- you will get stronger and stronger as time goes on.

    Loretta

  • robinlbe
    robinlbe Member Posts: 73
    edited February 2010

    KW - My BS had me wait until my drains were out before I did any of my exercises.  All he does is breast surgeries, so I'm confident in his direction.   I was worried I was waiting too long, but you know what, I have 99% of my range of motion back, I'd say.  I'm four weeks, one day out of my BMX (no recon).....I can do anything now I could do before surgery.  I even played my flute and piccolo in a two hr rehearsal last night (AND drove myself there!!)

    I've been rubbing/massaging my surgical site.]/scars since the 2nd week with Nivea lotion (surgeon's preference)....the tightness still continues to be worse at night, or in the extreme cold.  Constricting is a sign of the healing, according to my doc....and I will say it's much better now than two weeks ago. 

    When I'm in the shower, I will let the warm water run over my chest and I'll work my shoulders back.  Another thing I did when I was in extreme uncomfortableness (how's that for a word??) while my drains were still in was to warm up my cherry pit bag (kind of like a rice bag, or something like that) and laid it across my chest, and it helped a little.

    Just keep taking your pain meds, too....that always took the edge off of it for me....and still does at night.  that's the only time I take my percocet....just at night (one pill does it!)

    It does get better....

  • conscorner
    conscorner Member Posts: 3
    edited February 2010

    I had my original surgery two years ago and have suffered from tightness all around my chest and upper torso. I had the lattisimus dorsi flap reconstruction with my mastectomy. I recently had surgery again because I had developed a seroma on the left back scar and also contracture of the left breast. After this last surgery I'm tighter than ever. My PS said I would feel less tight but I feel worse. I'm not in pain, but as most of the other women have said, I feel like I'm in an iron bra. I thought that maybe if I lost weight, I would feel better. I'm actually quite thin right now, but I have lost about 3 pounds because I always feel full because of the tightness. I found it interesting that the tightness varies with the time of day and the weather. I'm going to see the PS this week because I just had the drain removed from seroma surgery. I'm afraid to massage the area yet and I do hope that the tightness will improve. It was very gratifying to read these posts and realize that I'm not alone in this bizarre tightness club.

    Thank you,

    Conscorner

  • lovemygarden
    lovemygarden Member Posts: 12
    edited May 2010

    I had my BMX (no recon) this past Monday (Feb 1st) so this is day 6 for me. I also had a port put in on the prophylactic side because I already knew I'm facing a year of chemo. I too am skinny with no "padding".

     I have that tight/numb feeling from the back of the armpits across the front but other than when I first get out of bed in the morning after lying almost flat for 5-7 hours, I haven't had any actual pain at all.Didn't need the pain meds other than a few regular-strength Tylenol once or twice a day.The feeling is just like when I once had to wear a compression bandage across my chest for 48 hours to control some bleeding from an incision (actually this is a bit easier because I don't have any tightness across my back, whereas with the bandage I did!). 

     kw212: The careful deep breathing does seem to help, although I was a bit hesitant to do it the first day after the surgery! I have just steri-strips now, because my doctor took the surgical dressing off on Day 4. I go back on Tuesday (Day 8) for whatever else she has to take off/out. Got my drains out on Day 4 also (by the way, it really did not hurt at all)

     I was given exercises to do "While Drains are In", "After Drains Out/Before Sutures Removed", and lastly "After Sutures Removed". So now I'm doing the second group. Basically shoulder rotational exercises. Not painful, more boring actually.

     chasinghope: I think we must be long-lost sisters because we feel exactly the same way about this process!! There was no doubt in my mind at all, either about having a prophylactic on the other side or about having no reconstruction. I also got hit with this during a time without medical insurance (!!) but even if I had insurance to pay for it, I would not have chosen any differently than I did. For me it's all about knowing what I can live with emotionally vs what I can't, going forward. 

  • badger
    badger Member Posts: 24,938
    edited February 2010

    Ladies, it seems we're more reliable predictors of the weather than the guessers on radio & TV.  :-) 

    chasinghope and lovemygarden - like you sisters, BMX no recon and OK with that decision and outcome. Surgery was Tues 2/2, went home Thurs 2/4, follow up appt Mon 2/8, hopefully have drains removed so trying not to move too much this weekend. 

    I'm tight across the chest but that's to be expected with incisions healing, deep breathing helps but no active stretching for right now.  Not a lot of soreness but am keeping ahead of any pain, one pill am and one pm.  Napping in between pretty good.  I guess I'm used to creaking a bit when I first get up, this will be one more thing...

    You know you're middle-aged when you hear snap, crackle & pop in the morning and it's not your breakfast cereal.

  • lovemygarden
    lovemygarden Member Posts: 12
    edited May 2010

    LOL, groundhog! Laughing  Isn't it the truth!!  One of the most annoying things about getting older, for me, is that in my 30s, 40s, and even early 50s I could easily spend 5+ hours at a time doing garden work and have no consequences afterward that a hot shower and a couple of Advil before bed didn't take care of. Ah, the good old days..... before my right knee began complaining (can't kneel on the ground anymore but must use a little garden seat to weed), my right wrist got injured when I stupidly spent 3 days scraping down an oak floor (have to wear a carpal-tunnel brace at night now), and my lower back quickly complains very loudly if I do too much bending-down weeding or raking. So now the most gardening I can comfortably do at one stretch (no pun intended) is 2 hours which during spring and summer is a mere drop in the bucket against what's needed. Oh well.

     I discovered something about the morning tightness/pain stabs that might help someone else: elevating my head a bit more than usual definitely made a difference. Normally I sleep on 2 pillows. The first few nights home from the hospital I accidentally had placed a newer, thicker pillow as the bottom one, and so my head was raised a little higher than usual those 2 nights. Then after I got the all-clear to shower, I washed my sheets and replaced the thicker pillow with my thinner usual one, so that night my upper body was back to its usual sleeping angle. The next morning was the first time I had noticeable shooting pains when I got out of bed. So last night I switched back to the thicker second pillow to see if the difference in head/neck/upper shoulder angle might make a difference, and it did! I had no pains this morning when I got up. It sounds crazy but maybe that little bit of elevation relieves some chest area strain somewhere? I do sleep lying flat on my back (always have) so this may only work for that position though.

     It might be worth a try to see if adding a little extra height to your pillow makes the morning bed-to-upright transition more comfortable though. 

  • badger
    badger Member Posts: 24,938
    edited February 2010

    I live in the midwest and have gotten more interested in naturalizing my surroundings, yes some lawn to mow and keep neat as my neighbors are retired and keep an IMMACULATE yard...OMG that's a whole 'nother story...but anyway, adding more prairie grasses and flowers.  They do well with little active care.  We do have black walnut trees so have to work around the juglone toxicity, and a clay soil, so I do a lot of container gardening anymore, especially for annual flowers.  Cuts waaaay down on the weeding...LOL!  But I can't wait for the bulbs to come up - snow crocus will come first...Smile

  • Maggie66
    Maggie66 Member Posts: 71
    edited February 2010

    Robin, I hope you're feeling better by now. I had a DMX in Sept. Breathing exercises helped me, as did Ativan, when things got horribly uncomfortable. At some point, I had some spasms and a low dose of muscle relaxant helped with that, though I didn't like the way it made me feel overall. It does get better! Maggie

  • faithandfifty
    faithandfifty Member Posts: 4,424
    edited February 2010

    Maggie.....

    Do you have a sense of when it actually got better?? The tightness that is???

    I'm just over three weeks out from BMX and would love to think in terms of weeks or months even..... like how long...... or was it so gradual that there's no landmark??

    thnks

  • chasinghope
    chasinghope Member Posts: 17
    edited July 2010
    Hello Ladies, Well, it hasn't even been 2 month out for me since my BMX and it's a little tight but really no big deal. I'm more worried about my other aches in pains. Anyone else know how to relieve a cyatka nerve problem. (I can't even spell it, so how did I get it!?) I tried to describe it to my onc but it all ended up looking like a comedy sketch on SNL Finally I said, I think I pulled a bum muscle? YIKES!!!! It torments me at night......I don't even really think about my chest until the morning, shower time and then I see my scars and then I'm reminded "Oh yea, I had by boobs off, should I have yougurt with granola today or scrambled eggs?" I'm more plagued by the thoughts of reoccurence? Anyone care to offer any words of wisdom on how to get peace of mind on that one....anyone, for at least 3 minutes a row in my day?
  • chainsawz
    chainsawz Member Posts: 113
    edited February 2010

    Chasing - I think you are talking about sciatica....sooooo painful!   Here's a web site where you can start: http://www.sciaticatreatment.org/  I had trouble with this when I was younger and exercises help to strengthen my back and helped with the pain.  

    Recurrance must be a big worry, but you have a much better chance of having no recurrance.  Anything less than 100% chance is awesome!  I think you will have to just get tired of being scared.  I know that sounds weird to say, but I think it's how we all keep moving foward with this dx :>   That's how it works for me....no words can really stop my mind from worrying....I just get tired of being terrified and just move forward and live!

     Faith - I started noticing a great reduction in the chest tightness after 2 months.  The tightness was really intense for the first month and started feeling better during the second.  Now 1 1/2 years later I only experience it once in a while so hang in there!! 

  • robinlbe
    robinlbe Member Posts: 73
    edited February 2010

    Maggie, Yes, the tightness is definitely better....thanks. I am almost five weeks out now.  The first 2-3 weeks were absolutely the worst.  I didn't have reconstruction done, and can't imagine how much more tight it would have been if I had of done so. 

    I did find out that when the weather changes, and the barometer changes, the skin reacts and also constricts ....which just adds to the tightening.....and of course, as the healing is going on, the skin heals by constricting.  This is what I have since found out from my BS since my original post.  I found out that if I took my pain meds, I could stay on top of the pain early on....

    My other mistake I made, was when I ran out of my 1st prescription, I thought I should no longer need the medicine.  Wrong.  Found out with a BMX, I would need the pain meds much longer.  I found out I could supplement with 800mg ibuprofen.  I also would stand in a warm/hot shower and let the water run on my chest and stretch and stretch.

    Now, I notice the tightness most when I first awaken in the morning.  I automatically go into my stretching routine (exercises that the American Cancer Society recommends), and start off with 400mg. ibuprofen.  (right now, I'm still getting fluid build up, too, that will need to be aspirated at my next BC  appt. which adds to some of the tightness).  Anytime the weather changes, it's worse, of course.  I also dress in LOTS of layers, as I find when I get chilled, the tightness gets worse.  At night, usually by 7pm or so, the tightness is much worse, and makes me feel irritable....so I will either take 800mg ibuprofen, or my percocet , depending upon the severity.

    But there is a definite improvement since two weeks ago.....definite!!!!

    as Lisa said, Hang in there....

    blessings...robin

  • kw212
    kw212 Member Posts: 4
    edited February 2010

    Thanks so much for the advice precioustime and robinlbe! It is getting better over time, and robin, thanks for the pain med advice. I was hating the oxycodone and how drugged out it made me feel, so I switched to just Tylenol too soon, I think. I gave myself a break and starting taking one again at bedtime. Also I took two last week when I went to get my drains out (yay!) and had a rather pleasant, lazy day in a pain pill stupor, playing Wii games with my son and falling asleep in front of the tv. I get caught up in the "need to be doing" too much. 

    I had my first PT appt. yesterday, cleared to start exercises. She said I had some cording, and worked on that a bit (OUCH!) but it's nice to be making progress. 

    Seem to be several of us no-recon gals here...I'm new, is there a forum for that? I would never question anyone else's choice (I actually love reading about how happy people are with their new boobs!) but for me it's working out. I was scared just before surgery about how different it would be, but really, other than the tightness we're talking about, I don't mind them gone too much (it's the cancer part that gets me upset!). 

    Thanks again, and hugs (gently) to all! 

  • robinlbe
    robinlbe Member Posts: 73
    edited February 2010

    kw212, you're a better woman than I am....I was given oxycodone after my 2nd surgery (vicodin-sp??) and it did a number on me....shew!!  It was awful!!!!  I said NEVER AGAIN to that stuff.....messed with my mind something terrible.  This time with my BMX, my BS gave me percocet and it was great - worked so well for me.  He and his nurse said to alternate with ipuprofen, since it's an anti-inflammatory.

    But glad you're getting relief, no matter HOW you're finding it....I think that's the key....is just finding what works for YOU and then sticking with it and staying with it, and not being afraid to use it, and staying ahead of it....and for me, it was realizing  that the extreme tightness and discomfort WAS pain....

    Interesting was that I had cording after my lumpectomy (which was more like a half-breast-ectomy) surgery 11/18/09 but haven't had any since my BMX on 1/6/10...hope it stays that way.  Glad your PT can help you out with that, but sorry it's painful, too...argh.

    I know there's a section for no reconstruction....and there is a gal who regularly writes on there who started her own site called www.breastfree.org (I think that's right.)

    Don't know if you've had this or not, but have you noticed how COLD cold drinks are now???? (when was your MX??)

    blessings...robin

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