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Topic: Hard to breathe with TE--normal?

Forum: Pain —

Share important questions and provide support to others experiencing breast cancer and treatment-related pain.

Posted on: Dec 2, 2012 12:29AM

Adelaide77 wrote:

Hi. I've been reading a lot of threads on these boards over the last two months since my diagnosis, but this is my first post. I am 32, no family history, diagnosed with IDC (since identified during surgery as Stage I) in left breast in September of this year. I opted for a double mastectomy (prophylactic on right side) with implant-based reconstruction. Surgery was done Nov. 20, and tissue expanders were placed at the time. The first few days I felt pretty good. Seriously. I pushed the pain button a whopping 4 times in the hospital, I think. But starting around day 4 post surgery, the pain really amped up. I know TEs can be painful, but I just want to pick the brains of those who have been through this to see if the pain I'm feeling is normal TE pain or possibly something else. I scared myself into thinking I had a pulmonary embolism the other day, but my rational mind knows I probably don't.

Anyways, the pain I'm feeling is thus: An extreme vise-like tightness around my sternum and perhaps a little to the left of my sternum as well. It's so tight that I have a hard time breathing (more specifically, inhaling), and when the pain is really bad, I can't get up to a normal range on my incentive spirometer. Coughing intensifies the pain. I'm still taking percocet, pretty much just as needed, and while the percocet helps relieve the other post-surgery pains I feel elsewhere across my chest, this particular tightness remains after I take a perc--although it is less intense. Is this normal?

And, more generally, I guess I'm looking for assurance that this will get better with time. I'm a stay at home mom to a two-year-old and four-year-old. Lifting my toddler into her crib, wrestling with carseats, doing fun things like making bread with my four-year-old...these all seem like impossibilities right now as it takes me anywhere from 5-20 minutes just to work up enough strength and courage to climb out of bed. I can't even fathom doing these things that require upper body flexibility and strength. For those who opted for reconstruction and chose TEs, how long till you were back to your normal, everyday, pre-surgery activities?

Would love to hear more about experiences with TEs from those who are further down this road...thanks, ladies!

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Dec 2, 2012 01:35AM juliaanna wrote:

Adelaide,  Welcome.  I didn't have much pain with my TEs.  I found it got easier as the fills were done.  Each of us have a different experience depending on our pain tolerance, physical condition and amount of surgery that was done.  You will get your strength and mobility back, but it will take awhile.  My PS didn't allow me to lift anything heavier than a coffee cup/newspaper for 4 weeks.  Other doctors aren't as conservative.  Follow the directions your doctor gives you.  You need to have time to heal, even though the incisions look closed a lot of healing underneath still needs to take place. After the 4 weeks I was able to pick up my 3 month old granddaughter without difficulty.

Regarding your pain, have you talked to your doctor?  That would be the best place to start.  There could be multiple reasons for the pain and your doctor should be able to help determine what is happening.  

Glad you decided to post.  There are a lot of ladies that will be happy to help you along the way.

Best wishes.

"Just live your life so that every morning, when you plant your feet on the floor beside your bed, the devil gets a cold chill and says, 'Oh CRAP' She's awake.'" Original diagnosis 2/7/12-mucinous carcinoma. Dx 2/7/2012, 1cm, Stage I, Grade 1, ER+/PR+, HER2- Dx 4/5/2012, DCIS Dx 4/5/2012, IDC Dx 4/5/2012, ILC, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 4/5/2012 Lumpectomy: Left; Lymph node removal: Left, Sentinel Surgery 6/1/2012 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 11/16/2012 Reconstruction (left); Reconstruction (right) Surgery 7/26/2013 Reconstruction (left): Nipple reconstruction; Reconstruction (right): Nipple reconstruction
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Dec 2, 2012 02:01AM Adelaide77 wrote:

Thank you, juliaanna, for the response. I did talk to my PS about the pain, and unfortunately, she wasn't much help. Her bedside manner is the pits, and I'm lucky if I get 5 minutes of her time during an appointment, much less any feedback on what may be causing my pain (and that included a mini meltdown, tears and all, during my last appointment). Fortunately her work is good (I had a heart-to-heart with my surgical oncologist's PA about her, and she assured me that my PS is an excellent surgeon who does beautiful work, just not so great at the interacting-with-people part of things).

Wow, nothing heavier than a coffee cup for 4 weeks...I think I've been overdoing it. My husband would probably agree as he keeps telling me I'm being a bad patient (reaching too high, etc.).

Thank you for the welcome. I am so grateful to be going through this in an age when there is a wealth of treatment options AND so many outlets for support. I have a feeling I will be visiting these boards a lot in the weeks and months to come.

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Dec 2, 2012 02:24AM juliaanna wrote:

If your husband says you are overdoing it, you probably are.  It's difficult to dial back when you are used to taking care of others, not yourself.  This is the time to take care of yourself.  Keep your elbows tucked to your side before you try reaching for something.  If you can't reach, get help.  You should be able to raise your arms up to shoulder level or maybe higher- with nothing in your hands.  Did you get any information on exercises?  Are you sleeping propped up?  Does that help?  Keep using your incentive spirometer.  Were you on antibiotics?  Is your cough dry or moist (coughing up sputum?)  (Sorry, I've put my nurse's cap on)  I would suggest that you keep taking your pain pills and back off on the activity.  If you don't feel better, maybe check with your oncologist- he/she should be able to check your lungs to make sure you don't have something going on in your lungs.  Have you had any fills yet?

It's pits your PS has poor communication skills, but she has been hired by you.  You deserve time and answers to your concerns.  I would suggest, for your next appointment, you write down everything you want to discuss and not leave until you have your answers.  I know how emotionally fragile we are at this point in treatment, so you may want to consider having someone go with you to the appointment that can help you stand firm.  That person could help the PS keep on task if you should have another melt-down.

If you want, you might come over to the November 2012 surgery group.  There is a wide range of experience there and you certainly fit the "criteria" of a November surgeryLaughing

Hope you have a better day.

"Just live your life so that every morning, when you plant your feet on the floor beside your bed, the devil gets a cold chill and says, 'Oh CRAP' She's awake.'" Original diagnosis 2/7/12-mucinous carcinoma. Dx 2/7/2012, 1cm, Stage I, Grade 1, ER+/PR+, HER2- Dx 4/5/2012, DCIS Dx 4/5/2012, IDC Dx 4/5/2012, ILC, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 4/5/2012 Lumpectomy: Left; Lymph node removal: Left, Sentinel Surgery 6/1/2012 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 11/16/2012 Reconstruction (left); Reconstruction (right) Surgery 7/26/2013 Reconstruction (left): Nipple reconstruction; Reconstruction (right): Nipple reconstruction
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Dec 2, 2012 06:29AM Yayme wrote:

Adelaide77....Just want you to know you are not alone.... I finallly get my TE exchange on Dec. 10th and can't wait another minute....for me, they are uncomfortable as all heck!!! I feel like I am wearing an iron bra...lol...I also have similar expereinces as you with it feeling like it is laying accross my chest sometimes making breathing deeply a bit hard....as I got my fills, the feeling would intensify for about a week...talked to my PS about it, she did say some woman do describe this feeling...I also think my reflux got worse during it!!! It will get better...and the exchange will be a glorious one I am sure for you when it happens. They did perscribe a muscle relaxer for me, but I could not take it as it knocked me off my butt...lol...Advil helps for the discomfort sometimes....private message me anytime if you have any questions or need to talk...

Lisa

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Dec 2, 2012 07:53AM Nurse_Lizzie wrote:

Adelaide77
So sorry you are hurting, and for the reasons you are here. Welcome to the club!

I agree entirely with what Juliaanna has to say, with a couple of additions. You had your surgery the 20th, which means you are just almost two weeks out. You are still very early in your healing and need to continue to take it very easy. My BS and PS were also very strict on lifting - 5lb restriction, nothing over my head or with arms extended. No cooking, cleaning for six weeks.

Even so, I had spasms like you are describing. My TEs were placed under my pectorals, and they screamed whenever I moved them. I asked for a muscle relaxer, which helped immensely. I got a prescription for Flexeril, although others on this board have used Valium or Robaxin. I would recommend calling your PS or BS for a prescription to try. AND you need to try a day of doing nothing to see how you feel.

It does stink that your PS has a lousy bedside manner. Working with doctors every day, I know the challenges of dealing with those difficult types. But it is important to remember that she is taking care of YOUR body, and you have a say. One strategy that sometimes helps is to talk to her nurse. Often the docs make their nurses the "front line" patient contacts, but they forget to let the patient in on the secret!

Good luck Adelaide - it will get better!

Nurse Lizzie

Dx 1/24/2012, DCIS, 3cm, Stage 0, Grade 3, 0/4 nodes, ER-/PR-, HER2- Surgery 2/23/2012 Mastectomy: Left, Right Surgery 9/12/2012 Reconstruction (left); Reconstruction (right) Surgery 10/11/2013 Reconstruction (right) Surgery 2/12/2014 Reconstruction (left): Nipple reconstruction; Reconstruction (right): Nipple reconstruction
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Dec 2, 2012 08:51AM Adelaide77 wrote:

Juliaanna - I appreciate your putting on your nurse's cap for me! I did get info on exercises, and I've been doing them 2-3x daily, although I still have 2 drains in and was told to limit raising elbows above shoulder level till they come out, which I have (mostly) followed. Cough was phlegmy in the hospital but is dry now, and I was on 7 days of clindamycin (they wanted something strong because I had a lovely encouter with MRSA this past summer). I will keep up the spirometer and exercises, and will pop over to the Nov 2012 surgery group. See you there.Smile

Lisa - So sorry to hear your reflux worsened through all of this. No fun! I had the same experience with muscle relaxers. I am nervous about getting dependent on the percocet, so I was hoping I might get some relief from muscle relaxers instead, and my PS gave me a script for Flexeril. I took one pill after dinner one evening (when the percocet was well out of my system to avoid any compounding effects) and felt MISERABLE all night long. So tired and out of it, but jumpy and crawling out of my skin at the same time--and the pain was still there! I threw away the entire bottle the next morning. I bet you are counting the days till your exchange. Just a bit over a week now! I pray all goes smoothly for you and that you are so much more comfortable after those blasted TEs come out. Smile

Nurse Lizzie - Thank you for the welcome and your insightful response. I am going to take the advice to heart to start resting more. I struggle so much with guilt over inconveniencing others to do the things I usually do (clean house, cook, take care of the kids, etc.), but I just need to remember that I'll be buying more problems down the road (for myself AND my supporters) if I overdo it now. I did try Flexeril and had a horrible experience with it, but I might ask about Valium or Robaxin. Thank you!

All the best to you lovely ladies.

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Dec 2, 2012 11:57AM Nurse_Lizzie wrote:

Oh Adelaide! I remember the guilt I felt when everyone was helping out! I think because we're not "sick", we feel like we should act like we're still well. It was also so difficult for me to do nothing all day, I felt like I was going stir crazy while all my friends and family were picking up the slack for my lazy butt....

It's amazing when you're lying on the couch - you can see every speck of dust, every dirty dish, every piece of laundry that needs doing. That's the other advantage to pain pills and muscle relaxers, then make you sleep, and you don't really care ;)

I do recall the day when I was about where you are, and I dropped the remote behind the couch. I was alone, so of course I HAD to move the couch. BAD MOVE!!!

I was lucky not to be dealing with little ones too. So please please take care of yourself now. You are absolutely right - if you push it now, you're bound to pay for it later. Try a different muscle relaxer, and really rest to see how it goes. I also remember trying ice and heat. Use a very gentle heat from a heating pad or hot water bottle for twenty minutes, followed by ice for twenty minutes. The heat will help soothe the spasms and the ice reduces inflammation.

Which reminds me! You can always try to add 400mg Ibuprofen ( 2 Advil) when you take your Percocet. The addition can often be very helpful. Just don't mistake and take extra acetaminophen because Percocet already has that.

Take care and let me know how it works.

Nurse Lizzie

Dx 1/24/2012, DCIS, 3cm, Stage 0, Grade 3, 0/4 nodes, ER-/PR-, HER2- Surgery 2/23/2012 Mastectomy: Left, Right Surgery 9/12/2012 Reconstruction (left); Reconstruction (right) Surgery 10/11/2013 Reconstruction (right) Surgery 2/12/2014 Reconstruction (left): Nipple reconstruction; Reconstruction (right): Nipple reconstruction
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Dec 2, 2012 12:22PM zappons wrote:

Hi, I had the same surgery Nov 14th. I had a lot of pain for the first 7-10 days. My PS prescribed Vicodin and Flexeril. I took both the first week, then cut back after that and only Flex. at night to prevent spasms. My PS said basically to do NOTHING for several weeks. Don't push, pull or lift with those arms much at all. Heaviest thing should be a gallon of milk for four weeks. He said the worst thing people do is try to do to much to soon and can end up back needing surgery for bleeding or infection because of it. Please, be kind to yourself. You aren't being lazy, just wise and healing!

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Dec 2, 2012 01:27PM rozem wrote:

adelaide...i wanted to reply because for the longest time i felt like i was crazy with what i have been feeling with these awful TE's.  Some women sail through this process but i, unfortunately, am not one of them.  I am 7 wks post-op and the tightness/heaviness/difficulty breathing is still present.  I have adjusted somewhat but these things are horribly uncomfortable.  I just think our bodies are all different and we have different responses to pain.  The only thing keeping me going is that these things are temporary and my PS assured me i would only have to wait 6 wks from final fill to exchange.  A few things that i am doing to help me through this process....i have done a few sessions with a massage therapist trained in mast/recon.  I am doing some physio aswell.  And yes, drugs when i need them (tylenol, muscle relaxants and advil).  Ive only had 1 fill so far but wil try another one again this week.  I am hoping the fills help eliviate the pressure as some have said

just wante you to know you are not alone.  My PS didn't really offer any answe to my pain other than "you are different then most patients" not very helpful!  pm me if you want to chat

FEC-DH, LUMP, 25 RADS, TAMOX, BMSX with LD flap (worst surgery ever) Dx 8/2011, IDC, 2cm, Stage IIA, Grade 3, 0/2 nodes, ER+/PR+, HER2+
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Dec 2, 2012 01:42PM zappons wrote:

Hi, I, too, have those same feelings. I just attributed to the moving and stretching of the chest muscles. I do recall one of the nurses in post-op saying that many patients have trouble breathing deeply after surgery on chest...  

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Dec 2, 2012 04:48PM juliaanna wrote:

Adelaide, Hope you are having a restful day.  I hope that decrease in activity=decrease in discomfort/pain.  Just be sure to keep walking as exercise.  Please let us know how you are progressing.

Take care.

"Just live your life so that every morning, when you plant your feet on the floor beside your bed, the devil gets a cold chill and says, 'Oh CRAP' She's awake.'" Original diagnosis 2/7/12-mucinous carcinoma. Dx 2/7/2012, 1cm, Stage I, Grade 1, ER+/PR+, HER2- Dx 4/5/2012, DCIS Dx 4/5/2012, IDC Dx 4/5/2012, ILC, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 4/5/2012 Lumpectomy: Left; Lymph node removal: Left, Sentinel Surgery 6/1/2012 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 11/16/2012 Reconstruction (left); Reconstruction (right) Surgery 7/26/2013 Reconstruction (left): Nipple reconstruction; Reconstruction (right): Nipple reconstruction
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Dec 2, 2012 05:36PM - edited Dec 2, 2012 05:39PM by Adelaide77

Hi all. Thank you for the helpful responses. Today was a very restful day...stayed home while my husband took the kids to church this morning and got some low-key things done around the house--phone calls, letter writing, emailing. After lunch with DH & kids, I crashed on the couch for a good 3 hours. I'm still in my PJs, and I think I may have forgotten to brush my teeth this morning. Oops. Just one of those days, I guess, but I'm feeling OK with it. I do love to walk, and I've taken a few moderate-paced walks in the neighborhood since surgery, and I want to find a way to make it part of my daily routine. I did lift our homemade pizza in & out of the oven today, lifted the tea kettle, and lifted a small watering can to water some indoor plants--but otherwise I've been a "good patient," as my husband calls it. And, I have to say, my discomfort level is definitely decreased. Thank you, ladies, for your wisdom, and for giving me "permission" to take it easy. :-) Sometimes I think that's all we need--someone to remind us, "Yes, you are going through something major. Now, please, rest, rest, rest." I don't feel so guilty resting when I have such a lovely chorus of ladies advising me to do so.

Praying that those of you who are still experiencing this pain get some relief soon. Best to you all!

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Dec 2, 2012 06:16PM juliaanna wrote:

It's good to hear you are having a better day.  

"Just live your life so that every morning, when you plant your feet on the floor beside your bed, the devil gets a cold chill and says, 'Oh CRAP' She's awake.'" Original diagnosis 2/7/12-mucinous carcinoma. Dx 2/7/2012, 1cm, Stage I, Grade 1, ER+/PR+, HER2- Dx 4/5/2012, DCIS Dx 4/5/2012, IDC Dx 4/5/2012, ILC, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 4/5/2012 Lumpectomy: Left; Lymph node removal: Left, Sentinel Surgery 6/1/2012 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 11/16/2012 Reconstruction (left); Reconstruction (right) Surgery 7/26/2013 Reconstruction (left): Nipple reconstruction; Reconstruction (right): Nipple reconstruction
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Dec 2, 2012 09:06PM fredntan wrote:

I had the same shortness of breath and tightness for a long time.

My initial BS was same way. I didnt hire her to be my friend.

MBC bone mets, afinitor,aromasin,xgeva Dx 8/3/2011, IDC, 2cm, Stage IIIA, Grade 2, 13/17 nodes, ER+/PR+, HER2- Surgery 9/9/2011 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Radiation Therapy 3/29/2012 Breast, Lymph nodes Surgery 10/8/2012 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Surgery 4/3/2013 Reconstruction (left): Nipple reconstruction; Reconstruction (right): Nipple reconstruction Dx 10/2013, Stage IV, mets Chemotherapy 11/20/2013 Abraxane (albumin-bound or nab-paclitaxel), Fluorouracil (5-fluorouracil, 5-FU, Adrucil) Hormonal Therapy
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Dec 3, 2012 03:00PM Adelaide77 wrote:

re: fredntan "My initial BS was same way. I didnt hire her to be my friend." Exactly. Since I've been assured that my PS does excellent work and that her horrible communication skills are in no way a reflection of her skills on the table, I'm willing to put up with her shortfallings in that department and just be extra dilligent on my part about getting all my questions answered.

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