Arm and Shoulder Pain After Breast Cancer

Shoulder Pain, Among Other Things

I wasn’t going to write a post this week. I’ve just finished up the latest round of doctor visits, tests and diagnostic images that are required now to make sure that breast cancer has not returned. According to all this recent rigamarole, so far, it hasn’t. So, I get to breathe again. Until next time.

Doesn’t mean all my problems are resolved. Fatigue and brain fog still lurk. A little stress can throw me under the bus again. The month-long cancer check-up extravaganza was stressful. So, I’m tired. During a good week, among the thirty or so hours of work I put in, I’ve been able to add one session of intense physical exertion, like spending an hour mowing the lawn or going to the gym. I can usually only pick one thing per week, though, which puts a crimp in getting through my overlong to-do list. But one session a week is better than none. If I’m lucky, I will only have to take a long nap after I exert myself thus. If I’m not, I will have to spend the next few days mostly in bed, saddled with fatigue — again. If, like this week, I have some extra stress, from seeing my breast surgeon yesterday, I find myself knackered again and have to postpone some project I’d like to accomplish, like working on some photographs or writing a blog post. My brain just doesn’t work as well after a shot of stress, and my body ends up once again feeling starved of energy. But I eventually get over it. It’s tedious, and folks who haven’t been through cancer treatment — including my breast surgeon — don’t really get it. But after three years, I’m used to that.

The Gift That Keeps On Giving

Chronic, long-term pain and weakness can also sap your energy. So, I’ve been trying to make the effort to address my shoulder and chest pain. Sometimes, I can get away with a few short bursts of high exertion, like trying to do my shoulder exercises. A lot of us have shoulder problems after cancer treatment. And I’ve been wanting to write another post about how to deal with them. So, I’m going to give it my best shot. Recently, I came upon a great review study about this issue. It was published in the journal, Archives of Physical Medicine and Rehabilitation in 2006, and the link will take you to a PDF of the article. The review found that as many as 7 in 8 women end up with problems affecting their arms, shoulders, necks and chests after breast cancer treatment. The article describes several of these, in order to point the way to the effective treatment of them.

As a physical therapist, I’m familiar with a number of these disorders, because I’ve treated many of them in my patients over the years. There is a difference, however, between the effect of these disorders in people who have not had cancer treatment and those of us who have. And the main difference is one of chronicity. In other words, if they occur as a result of breast cancer treatment, then very often, they never really go away, a fact to which I can personally attest. The first thing you need to do if you have a problem is to take it seriously and go to a doctor, who will, hopefully, also take it seriously.

Following is a descriptive list of the problems highlighted in the study:

  • Cervical radiculopathy — pain, numbness, weakness in the shoulder, arm or even the hand and fingers, caused by a pinched nerve in the neck. This can mimic brachial plexus problems or neuropathy from chemo. It can come and go, worsen depending on positioning or activity, and can lead to other problems. If there is a pinched nerve in the neck, this can generally be seen in an MRI. Anti-inflammatories and knowledgeable physical therapy can help.
  • Peripheral neuropathy — miserable. Causes pain, numbness and weakness that is usually distal, meaning at the end of the arm, in the wrist, hand and fingers. Neuropathy is a common side effect of chemotherapy, often resulting from taxanes in particular. The study states that oral glutamine, at 10g taken 3 times a day starting after each chemo session, may help prevent neuropathy. After neuropathy takes hold, however, it can be debilitating, and treatment can be difficult. An interesting study of treatments for neuropathy was published last week by CureTogether. The treatments were rated by patients, and found that some of the most prevalent treatments, like oral neurontin, were rated poorly, while less common treatments, like low dose naltrexone, water exercise, and physical therapy, were rated as “surprisingly effective.” It’s a tough, chronic problem for many, but perhaps this study will give you some ideas to take to your doctor.
  • Rotator cuff tendonitis — our rotator cuff is a group of tendons that come from muscles that originate around the shoulderblade. They merge at the shoulder, forming a cuff that attaches around the shoulder joint to the top of our humerus, or upper arm bone. They help us move and lift our arms in every direction. Their function is also dependent on the muscles of the chest, or pectoralis muscles, which attach in our armpits and upper arms, as well as our shoulderblade, or scapular muscles, which help stabilize things so we can move our arms in so many directions. So, it stands to reason that treatments like surgery and radiation in the area of our chests and armpits can throw everything off and lead to pain every time we try to reach, lift, push, pull or otherwise move our shoulders. This is my most prevalent and stubborn shoulder problem. Oral anti-inflammatories, ice, and even an injected anti-inflammatory (with scrupulous sterile technique so as not to set off any lymphedema) can help alleviate acute symptoms. But in order to get this under control, physical therapy — preferably by someone who also has knowledge of lymphedema and axillary cording — and/or a gradual program of stretches and strengthening exercises is the only way that chronic problems relating the rotator cuff can be managed and mitigated over the long haul.
  • Adhesive capsulitis — often called ‘frozen shoulder,’ this is a very common problem after breast surgery, reconstructive surgery, lymph node dissection and radiation. It can accompany lymphedema, infection, tumor recurrence or metastases. It presents as significantly restricted active and passive range of motion in the shoulder, especially when rotating the arm or lifting it out to the side. Resolution can sometimes be spontaneous, but it is very much dependent on whether acute cancer treatment is finished. It can also occur simultaneously with cervical radiculopathy or rotator cuff tendinopathy. All of these problems need to be addressed by adequate management of pain and inflammation, as well as physical therapy and careful, persistent exercise.
  • Lateral epicondylitis — restricted shoulder movement can lead to compensatory motions in the elbow and wrist that can lead to pain and inflammation in these two areas as well. I had elbow pain and persistent lateral epicondylitis myself during my first year after radiation. Fortunately, I managed to stop it from getting worse, but I still have my shoulder problems. Ice, anti-inflammatories, wrist or elbow splints, and physical therapy or occupational therapy can help. Use of splints or compression bands may not be permitted, however, if active lymphedema is present, or if peripheral neuropathy is too painful to tolerate wearing a wrist splint.
  • Postmastectomy syndrome — this is a messy, complex problem that visits a lot of us after any sort of breast surgery, including lumpectomy, partial mastectomy, axillary node dissection or reconstruction. It can present as a kind of hypersensitivity in the chest, armpit and shoulder, and is not unlike the phantom pain the occurs for people who have a limb amputated. I’ve remarked in previous posts that the euphemistic medical terms used for the removal of breast tissue should all just be called amputations. Here’s yet another reason for calling a spade a shovel. Pain meds, therapy to improve range of motion, and time comprise the treatment for this.
  • Edema & Lymphedema — the medical term for swelling is edema. A certain amount of swelling always accompanies injury or surgery. It’s part of the normal inflammatory process by which our immune systems bring white blood cells to the area to help repair it. However, because it’s literally ‘hot,’ as in flame, as in inflammation, it’s also a nice little laboratory for the formation of problems like cellulitis or other infections, blood clots, seromas, and tissue necrosis. When our circulatory vessels get clogged up and overwhelmed by dealing with all this, the fluid can get backed up in the armpit or arm or even the torso next to the surgical site, signalling the onset of lymphedema, another kettle of fish entirely. Lymphedema deserves its own post, but here are a few resources. A good, downloadable booklet, published by Breast Cancer Care, UK, can be found at this link, Lymphedema-Management. And an excellent website that provides thorough information about the diagnosis, prevention and management of lymphedema is StepUp-SpeakOut.org.
  • Brachial plexopathy — in our armpits, we have an arrangement of nerves called the brachial plexus. These nerves allow movement and sensation to the muscles of our arms, chest and hands. Anything that puts pressure on this plexus can cause pain, weakness and numbness in the arm, hand, collarbone area or even the neck. True brachial plexus disorder is rare in the general population, but after breast cancer treatment, it can arise from scar tissue after breast surgery or node dissection, or from lymphedema that causes congestion in the area and puts pressure on the nerves. On the other end of the spectrum, it can in some cases be related to invasive tumors to the lymph nodes or other tissue in the area. It can even be related to metastatic cancer. However, it can also arise as a late-term effect of radiation, which may take months or years after treatment to rear its ugly head. Differential diagnosis needs to be thorough, to rule out other causes or recurrent cancer.
  • Rib fractures — fractures of the ribs can occur after radiation or after the insertion of breast tissue expanders in previously radiated tissue. A summary page, prepared for the site UpToDate by radiation oncologist Lori J. Pierce, lists all the potential early and late effects of radiation after surgery for early breast cancer, including rib fractures. An interesting side note is that one of the editors listed for this part of the site was my radiation oncologist, who did NOT, by the way, discuss any of these potential side effects with me before I received radiation, and who was singularly unhelpful when I developed a respiratory infection and extreme fatigue while I was having it. I’m not going to “out” this person here, so you’ll just have to muse on this for yourself. An abstract prepared by plastic surgeons at UC-Davis Medical Center explains what happens with tissue expansion after radiation. An older study, published by the Danish Cancer Society, discusses late-effect rib fractures and other damage resulting from radiation after mastectomy. You’ll probably need an X-ray to determine whether you have a rib fracture, and there’s not much you can do for one, except to take pain meds, try not to cough or lift, and wait for it to heal. It can take several months for one of these to resolve.
  • Pathological fractures — more urgent and insidious are fractures, sometimes occurring in the upper arm, that are pathological fractures associated with bone metastases. Not to make us all nuts, but if we experience any fracture after a diagnosis of breast cancer, we need to have it thoroughly checked out to rule out bone mets. Which is why I get a little peeved at the folks who push aromatase inhibitors without thorough evaluation and informed consent, which are drugs known to cause osteoporosis, which can cause fractures, which can make us insane with worry that we might have bone mets. Not to mention the fact that osteoporosis by itself is no picnic and is another issue about which I need to write another post.

What To Do?

If you develop one or more of the above problems, you should first talk to your surgeon or oncologist. If you get no help there, at least ask for a referral to an orthopedist or neurologist who is familiar with cancer treatment problems so you can get a clear differential diagnosis. If you’re lucky, the place where you’ve had cancer treatment will have good ancillary cancer care services and/or a complete referral database, which will steer you toward help with fatigue, cognitive problems, depression, neuropathy, orthopedic issues, rehab therapies, pain management and other issues that arise during and after acute treatment.

If you have relatively minor pain or you know you have shoulder rotator cuff soreness or impingement or you’ve had rehab therapy previously and need a tune-up, there is a downloadable PDF at the beginning of the next paragraph, which diagrams the exercises I’ve been doing for my shoulder, among others, which I have also taught to countless shoulder patients in the past. Do not do these if you have lymphedema — you need to be supervised by a rehab therapist before performing any resistance or strengthening exercises when you have active lymphedema. If you can find a piece of Theraband or Theratubing, that is helpful, but you can also do the exercises in this PDF without it, by just getting into the positions shown and moving your arms in the correct motion. Standard Theraband comes in different colors that signify different levels of resistance. You should only start with yellow or red in the beginning and only progress to green when you are feeling stronger. If you obtain resistance tubing that is made by some other company, it may be coded differently, so make sure you start with the easiest, or lowest, resistance color.

Therapeutic Shoulder Exercise Pictures: You want to feel some effort when you do these exercises, but you don’t want to feel pain. A little soreness that goes away after one or two repetitions is okay, because that means you are loosening up, bringing more oxygen to your muscles, and more joint fluid is being squirted into the area to lubricate things. You may also want to take your anti-inflammatory or pain med before starting. Start with the exercises on pages 1-3 and page 5 first. Do not do the page 4 exercises yet. Try 10 repetitions, and make sure you do them all with both arms, even your ‘good’ arm. Put an ice pack on your shoulder afterward for about 10 minutes to get rid of any minor inflammation you may stir up with the exercises. Consistency is the key. You need to try to do these every day or at least every other day to make a difference. If any one of them hurts while you are doing them, stop! The exercises that show the person lifting the arm need to be done exactly as shown; do NOT lift your arm any higher than about 90 degrees, or chest/shoulder height. Going higher will only worsen the problem you are trying to fix. If you do well with 10 reps, you can try going up to 15. The rule of thumb with how many repetitions to do is to start low and go slow!

If you can get through these for a week or two, and you can do 20 reps of each, then you can add the exercises on page 4 and gradually add the ones on pages 7 through 9. Ice afterward. If you skip too many days between doing your routine, you may wake up with worse stiffness. This is usually a normal rebounding type of reaction, and if you go back to the beginning and gradually work your way back, you’ll be okay. If you experience worsening pain after doing any exercises for a few days, stop doing them and see your doctor or rehab therapist.

My shoulder has gotten a lot better since I’ve been doing my exercises, but I wasn’t even able to start these exercises until about a year or so after cancer treatment, because I had so much pain, I had to rest my shoulder for a long while, get my soft tissue massaged and worked on for a while, and get the pain, axillary cording, and inflammation under control first. Fatigue also got in my way. So don’t be frustrated if you need some formal treatment before you can continue on your own. In my own case, I realize after three years that I will always have to do shoulder rehab, because the damage to my chest muscles from radiation is permanent and always worsens if I stop my exercises. If you have cervical radiculopathy, or any of the other problems described above or in the review study, you need to be properly diagnosed first, be under a doctor’s care, and if advised, receive formal physical therapy before trying anything on your own.

Good luck! I’m off to take a nap now.


Other posts you may find helpful:
Adapting: Practical Stuff for Hands and Arms
Back Talk 101
Back Talk 201
Losing It and Trying to Get It Back


Please click on the post title or the comment link below to post a response.

pixelstats trackingpixel
Share
This entry was written by Kathi, posted on Wednesday, August 24, 2011 at 02:08 pm, filed under Chemotherapy-IV & Oral, Fatigue, Health & Healthcare, Lymphedema & Cording, Pain & Neuropathy, Radiation, Surgery & Reconstruction and tagged , , , , , , , . Bookmark the permalink . Post a comment below or leave a trackback: Trackback URL.

39 Responses to “Arm and Shoulder Pain After Breast Cancer”

  1. Hi Kathi,

    First of all, congratulations on making it through the doctor gauntlet with your sanity and physical health intact! I go nuts whenever I have to see doctors and get tests.

    Secondly, thank you for such comprehensive information. You always do a thorough job discussing these issues. I have chronic pain from the DIEP flap. The abdominal wall was more compromised than I was led to believe. I picked up my daughter and suffered for a month afterward.

    Thanks again! The world needs to hear what you have to say.

  2. Thank you so much. No … really. THANKS! TONS! This is so useful to me. I had a sentinel node lumpectomy in March 2009, followed by 6 rounds of chemo and then radiation. I then was on Arimidex, which caused awful side effects and am now on Tamoxifen. Nobody prepared me for all the difficulties I’d endure AFTER treatment. It’s been a real shock. Almost a year and half after treatment and I still struggle with fatigue, migrating and inexplicable phantom pains, all over joint problems. Both of my shoulders ended up frozen at the same time and have now mostly thawed though I still have some limited range of motion.

    The information you’ve provided is very useful but more than anything, I shed a few tears because you make me feel less alone, though I’m so sorry for your struggles. I’m sorry for all of our cancer struggles. The way you describe your fatigue and brain fog at the beginning of your post mirrors my own and yet I feel guilty for not having the stamina to easily manage my full time job and my home. Thank God my kids are college aged and don’t live at home. I wouldn’t be able to manage at all. I’ve become commitment shy in my social life because when the scheduled date arrives, I’m often too tired or just brain-tired to be social, which is hard on my very social husband … who, I think, expects me to be “okay” by now. I have hair now, after all. I must be okay. Nevermind that I’m still drawing on eyebrows and marveling that no underarm hair has reappeared and leg hair is very scant. I mean VERY. And I can’t feel my feet from the neuropathy. Taxotere was a bitch!

    Anyway … I could go on. But thanks for this post. Know that you’ve helped someone immensely today. Even if mostly on an emotional level.

  3. Thanks, Beth. There are so many issues we are not prepared for adequately. I was pleased to see that on Twitter, this post was retweeted by a couple of folks who have sites that are dedicated to providing patient-centered healthcare info. Makes me feel good!

    Heather, dear, dear sistah!! You’ve come to the right place. I’m so sorry for all your struggles, but believe me, there are a lot of us who understand. I had DCIS, for heaven’s sake, so you can imagine how astonished I’ve been to have so many problems after treatment for non-invasive cancer!! I’ve written a lot of posts about fatigue. One of them is linked at the bottom of this post (Losing It and Trying to Get It Back), which has some info about dealing with cancer related fatigue. The first cogent post I wrote about CRF is called The “F” Word, and you may find that helpful, too. I had to search high and low even to figure out what was wrong with me in the first place. I was so grateful to find the info I did and not feel like I was nuts or ‘lazy’ or weak-willed or in general half-convinced I had some character flaw. There are some treatments for it that have helped me function — after all, I HAD to work, even if I haven’t been able to return to full-time — because no one else was paying the bills!!

    Good luck to you & come back & visit. Gentle hugs to you.

  4. Thank you, Kathi~

    I always feel like you are writing just for me! Truly, every woman experiencing Breast Cancer will benefit from the information you have shared in “The Accidental Amazon”. When surviving “survival” affects our quality of life with confusion, pain, undiagnosed symptoms, fatigue, some of us are left to feel small, inadequate, weak-willed, stupid, useless, etc., etc… Frightened and alone with no alternative solutions, often abandoned by physicians, family, and friends; we search for guidance out of the muck, trudging towards the light of hope, healing, wellness, and a return to dignity.

    You provide a source filled with friendship. trust, smiles, tears, and wealth of golden “good stuff”… (Vitamin KK, sunshine, goodness)~
    xoxo
    Love,
    Indi

  5. [...] Question: Tell me more about brachial pathoplexy… how do they dx (diagnose) it? What are the rule-outs (other than local recurrance)? [...]

  6. Thanks Kathi – extremely helpful info, wish I’d had those exercises years ago!
    Sarah

  7. Kathi,
    Well, this is a very comprehensive post. Thanks for writing it, especially after the exhausting past few days/weeks that you’ve had! I’ve been taking a little time off from blogging myself. Back to it next week.

    I have a lot of shoulder pain and limited range of motion now. Sometimes I feel like such a wimp. This all is another very misunderstood and not talked about side effect of treatment. I recently had a bone scan and MRI to rule out cancer recurrence. Turns out I have rotary cuff issues. I must get back to doing some exercises. Eventually I may need surgery, but I just can’t stand the thought of more surgery for a while. They don’t know what caused my problem, but it’s definitely all cancer related.

    Congrats on getting through your last appts in one piece. Great post as always. Full of valuable info. Thanks.

  8. Thanks for mentioning Edema & Lymphedema. Not many people know or understand this condition.

  9. These posts have been very helpful. I have been experiencing arm pain for about a month which has worsened. I find certain movements and extensions cause pain. I am really trying not to freak out and think this is cancer again, but I am worried. I am almost 10 years out from my cancer diagnosis which included chemo, radiation, tamoxifen and aroma taste inhibitors. I plan to see my doctor, but it sounds like an MRI will be the most definitive test to make sure this is not serious, and hopefully the result of scar tissue, and treatments. Any advice would be helpful,thanks.

  10. Katie, you may want to see an orthopedist. Many post-treatment problems are orthopedic in nature and some rehab from an OT or PT familiar with cancer issues might be the best thing.

  11. Hi Kathi,

    Wow, thank you SO much for this blog post! I just now saw it for the first time (not sure how I missed it before). What an incredibly informative post. I am experiencing shoulder and neck pain and did a search on that and this post came up. At the time that you wrote this post it was three years out for you – which is about where I am at. Your post really helped me – I am so affected by stress – I find myself completely worn out by a stressful day, week or month and end up needing to spend a lot of time in bed simply to recover. It worries me a lot (the pain and fatigue I am experiencing). And, recently I have had daily headaches which of course also adds to my worries. Anyway, I just wanted to write to you to tell you how much your blog post helped me. It may be the one thing (reading your post) that will enable me to get to sleep tonight. So thank you!

    I see my oncologist next week and hope that all will be well. I realize that if I report to her that I have had shoulder and neck pain and headaches that she is likely to order scans. It is hard to know whether the pain is form all of the surgeries (parts removed, added and moved), chemo after affects, radiation after affects or something that I need to be more worried about. I continually take on more and more (both physically in terms of exercise) and work wise (a lot more hours, more teaching and tutoring and writing). So this increased activity could definitely be a reason for new pains. But, it is scary. I have many of the issues that you described above (neuropathy, frozen shoulder, weakness in my upper body, pain, numbness, etc). It is so encouraging to hear that you have had improvement with exercise. I have been running but, it causes my upper body to tighten up and this leaves me in quite a bit of pain. So, I think I need to revisit the running and work on some of the exercises that you have so generously provided on your post.

    Thank you again.

    All the best,
    Lisa

  12. Hi Again Kathi
    I just found out I have a torn rotator cuff along with frozen shoulder. No wonder I have been in pain for so long. Stopped the myofascial release therapy as the pain wasn’t getting better. Went to an ortho who ordered an MRI and then diagnosed the frozen shoulder. So now I am seeing a PT who is stretching the shoulder capsule and giving me home exercises. The pain is worse. How do I get through the night. Cannot sleep.

    I am so depressed that I just cry knowing that this will be a long road and maybe another surgery. (shoulder)

    Carmella

  13. Carmella, first of all, you need to be icing it regularly for a while. Get yourself a decent, reusable gel cold pack (drugstores usually have them). Try to get one that really is filled with gel and not the ones that look like a bunch of rows of little ice cubes. You need one that’s big enough to wrap over your shoulderblade and over the top of your shoulder & down over the top of your arm in front, where the rotator cuff tendon attaches. Use it for 10-15 minutes at a time, and every few hours. You might also need to take an oral anti-inflammatory for a while. If you have trouble with them, send me an email (kk@accidentalamazon.com) & I’ll send you more info. If it’s a partial tear, it can heal & you can get back to normal, but the PT needs to hold off right now on stretching the capsule so the inflammation can calm down. The exercises for a rotator cuff tear need to be very gentle. I can tell you a lot more in an email, if you like. I’m so sorry. Shoulder injuries can be very painful, and you have two of the most painful ones. :(

  14. There are 23 kinds of breast cancer, and I had the 2nd worst kind. I did not know it, until afterwards, how bad it really was. Radical mastectomy on the left side, after 1 year of chemo, and then radiation, and then another year of experimental chemo, and I am still here! My surgery was Dec. 2008. 6 months into the chemo, the instilled a port on the wrong side – the cancer side. I had terrible neck and shoulder pain, veins distended (o yeah, I woke up while in surgery – by feeling as she cut my chest, then back to sleep,then I woke up again to her pushing that thing into my chest…I couldn’t move, but I heard someone say my foot moved, and I was awake – then O shit, then I was out for 10 hours after that – that surgeon has be said to be responsible for 3 deaths and is no longer at that hospitial, or even in business, I believe.) any way, they took out the port within 4 weeks and those symtoms were relieved. My left arm is now 2 inches bigger than my right. I stretch and stretch – but my shoulder hurts so much, to raise it or put on a coat hurts. I am scheduled to have surgery in March by a man who is the only one in this country doing this surgery: reconnecting inguinal lymph nodes into my arm to improve lymphatic drainage. At this time, I get reconstructed to barbie doll goodness, along with a tummy tuck using that fat to create the breast. This doctor is Peter Nelligan and he is with the University of Washington in Seattle. I currently live in a small, coastal town in Washington, and it was my sister who convinced me to go to the Seattle Cancer Care alliance – which is a good thing, or I wouldn’t be alive had I not. I had some CRAZY experiences in the Aberdeen Hospital that so remind me of ‘jacob’s ladder’ and never in my life will I ever willingly step foot there again. I filed 5 official complaints over an incidence with my friend after my chemo treatments there, but add that up with 3 horrible things which happened to me there – that place scares the hell out of me – and I know personally, some of the personell who are like hoarders of the worst, rat infested kind….Anyway, I wanted to let you know of this innovative surgery. He swore I would not be in any worse shape after surgery, if the worst happened and the nodes did not take. He has a 93% rate of success. I am not crazy about becoming a patient again, or getting mris cats or pet scans or going under the knife. I will be in the hospital for 3 days, which alone says something about the pain I guess. I has acclimated myself to being this way the rest of my life, amputated on the left side. And so it is with a weird sense of ‘wait and see’ to really see if I can have 2 breasts again. If you’d like, I will keep you updated how I progress. Thank you for sharing your story! Roberta

  15. Roberta, thank you for sharing your story. I’m glad you found your way here. Let us know how you are doing.

  16. I am so thankful that I stumbled across this website today. I am one month post-radiation, 5 months post lumpectomy for DCIS. I live in a very rural area, so getting radiation treatment accessible was such a battle with my insurance, so much so that I had to go on Wellbutrin just to be quasi-functional. I am a single Mom of two (13 &10) with no family close so this has really been a trek I wouldn’t wish on my ex’s new wife. And that says something.

    I worked entirely through radiation except for two days that I could not get dressed due to the burn. Otherwise, every step has been an issues – lies from my surgeon (“you wont need radiation”, which was my worst fear at the time & “no one will be able to tell”, and then I am left with a completely deformed breast that you can notice size difference even in a sweatshirt), a 10 week battle getting radiation scheduled so I wasn’t on the road 3-4 hours each day, and now the after effects.

    I am too tired to do much of anything, but I am good about pushing myself. I have to stay working, and picked up a part time thing with Origami Owl to start paying off the medical bills. Now, I am getting swelling in my hands and bad joint pain. Not sure if the knee is related (although the Aromasin says it causes joint pain), but I am sure the should is from this process. Problem is, I am being kicked off insurance because of where I live now and can not access much of anything until I can get new Drs locally after 4/1.

    Someone earlier in the string posted that everyone seems to think all is good because the process is over. I am running into the same, and I am drowning. Thank you so much for offering this blog, it was good therapy just to type this out and have a good pity party cry. Bless you all and be strong…..

  17. Dawn, I’m glad you found your way here, too. I’ve been saddled with fatigue for over four years now since acute treatment was done, and I’m only now really feeling like I can move on. I still have to stay on top of my own shoulder and arm pain every day. My movement is still restricted, and if I don’t stretch and do my exercises regularly, it’s just miserable.

    I’ve felt better over time, but it took a lot MORE time than my doctors ever warned me it would take. Hang in there, and stop by again to let me know how you are doing.

    xxoo, Kathi

  18. Thank you so much for this post! I have been trying to figure out why my shoulder has been hurting suddenly 3 weeks from my lumpectomy when it didn’t hurt before. I thought i must have hurt it some other way. I never heard anywhere else that it could be so related to the surgery. I will try some of your suggestions and hope it gets better. It isn’t unbearable but it doesn’t seem to get better like a usual strain I’ve had before. It is so great when we can help each other like this!

  19. Glad you found this, Maureen. Hope it helps.

  20. Kathi,
    Thank you so much for posting this. I’m so happy that you are cancer free!

    I am 10 weeks post radiation (left) and 5 months post Chemo (TC) and had bi lat mast Oct 12. I came across your page googling shoulder pain post bc treatment. All my drs find that my pain is just baffling. They all say you shouldn’t have pain in your shoulder. I cannot lift my left arm, rotate or take a shirt off over my head. Everyone thinks I should be back to normal by now, including me. I am not a depressed person but chronic, severe pain is depressing! I will try the excercises you have posted. I am taking an anti inflammatory for back arthritis but it really hasn’t done much for my shoulder pain. I think from what you have posted it is rotator cuff tendonitis, which from what you suggest resting should help. I am a runner and before bc dx was weight lifting. I am good shape but now cannot do most of what I used to.

    Thank you for listening and most of all for posting. So many make us feel that we are alone!

    My prayer is that not one more person is dx with cancer!
    Hugs!

  21. Glad you found your way here, Kimberly. I hope the exercises help. My arm & shoulder are much better, but still have their ups and downs. I will always have restricted range of motion & have to keep at my exercises so that I keep most of it. A physical therapist might help, too. A lot of our collateral damage is forever, I’m sorry to say. Good luck to you. Kathi

  22. I too am glad to have found this blog. I think I’m following the same timeline as Dawn who wrote on March 21st. I had my surgery (lumpectomy) end of October and finished radiation Feb 21st. I consider myself very fortunate to have been diagnosed early (stage 1a) with one small tumour and LCIS throughout my left breast. According to the results of the onco-dx test I didn’t need to have chemo so I felt pretty blessed! But now I have this sore shoulder and limited mobility. I am pretty certain it is from the rads. I remember laying there during the second to last (or maybe last treatment) and feeling something tear or give way was my arm was extended over my head. I bumped my hand today and it forced my arm to move in an awkward angle (it wouldn’t have been awkward for me before treatment) … but anyway the pain was excruciating. So I am convinced now, after reading the posts here on this blog, that I need to get it looked at. I am also relieved to hear others talk about the fatigue, brain fog and joint pain. I tried to take arimidex and couldn’t tolerate it. It made me so depressed! I wanted to die. I’m taking tamoxifen now and doing a lot better. I’ve been on it 1 month and I would have to say that this is perhaps the first day where I don’t feel fatigued. I still don’t have the energy to do house work, but at least I can write this post this evening instead of falling asleep on the couch.

  23. I am so happy I found this website. 2 years ago I had lumpectomy and radiation for stage 1 DCIS. I didn’t have chemo but the 30 treatments of radiation have caused me a host of other medical problems- I went into a thyroid problem, (already had one and it is worse now), I had trouble swallowing, lymphedema in my trunk and breast, and now the shoulder pain. It doesn’t always hurt, but if I turn the wrong way or reach or try to raise my arm over my head I get a pain like a knife. Today it hurt so bad I am in tears. I had an xray done recently and will get the results this week. Tomorrow is m followup mammogram and breast surgeon and I am in tears between the pain and the anxiety. Any advice you can give for the pain would be appreciated. I see you suggest ice rather than heat and I will try that right away… I am very frustrated and tired of being in pain. I don’t mean to complain but I have 2 disabled adult children at home and don’t have time to be sick or laid up with this shoulder. My daughter is a full transfer and I cant lift her. She doesn’t understand so wants her Mommy. Im sorry just venting
    You all have much more side effects to deal with and I sure I sound ungrateful- I AM happy the cancer is gone but like you said- its the gift that keeps on giving.

  24. Tina, I hope you get a proper assessment of what’s going on. I had a lot of problems from radiation and had to have PT. It helped that I’m a PT myself, so I had a clue about what was going on and why. If your cancer docs do not provide satisfactory help, see if you can get a referral from them to an orthopedist who is used to dealing with cancer patients. Good luck! I can tell you that, five years out, my right shoulder & side are much better, but I still have to keep stretching and strengthening them and still have occasional spasms. xoxo, Kathi

  25. I am so glad that I found this blog! I was doing research on frozen shoulder and reading all these posts has helped me realize that I am not crazy. I had a lumpectomy in Feb 2013 for DCIS, and 4 weeks later an additional surgery to remove more tissue and two nodes. I had radiation and now take tamoxifen. Because the DCIS was on my left side, I did the radiation where you are on your stomach and you are dropping your boob into a hole in the table. At that time, I was able to fully extend both arms over my head. This went on for the 6 weeks of treatment which ended in July. I did a few things after the surgery like raising my arm above my head, but I was really careful because I was afraid of getting lymphedema. When I look back, none of the doctors and nurses ever talked to me about frozen shoulder, or said that I should be doing preventive exercises. And then, in September, it just started to get worse. The painful spasms started, and it became harder and harder to get dressed. My follow up mammograms were excruciating to go through in October, and my surgeon wrote me a prescription for physical therapy. I am a busy mom of two college kids, I work as a teacher’s aide and I am also the caretaker for my dad. So I didn’t go at first. Then one windy day I was wearing a hat, and felt it blowing off my head. Instinctively, I reached up to grab it, and I almost passed out from the pain. I was at an outdoor shopping mall with my husband. He walked me into the store and helped me sit down and when the pain subsided, I knew I had to take the time and go to therapy. Well, I’ve only been doing it for a few weeks and it is very painful to do the exercises. And if you don’t do them between sessions, you regress. I also have naprocin (spelling?) but haven’t seen much relief from that. I have terrible hot flashes all day long, so the heating pad and hot baths that are recommended are not easy to do. I am hoping that I get some range of motion back soon. It’s amazing how the simplest things, such as reaching for a glass in the cabinet are so hard to do now. Thanks for listening, and – I almost forgot my question – has anyone had the ultrasound done as part of the therapy? My therapist said she will have to ask my oncologist if it is okay for me to have it bc she thinks it will be beneficial. I’d appreciate any info you can give – thanks!

  26. Marirose, I’m glad you found your way here, too. Ordinarily, ultrasound is contra-indicated for cancer patients. It may be okay if the PT sticks to a limited area around the shoulder joint itself, but avoids your chest & armpit & most of your arm below the shoulder. The doctor will have to decide. If naprosyn doesn’t work, you might see if another type of anti-inflammatory will, like advil or something. Cold may feel better than heat to relieve the soreness. Often I suggest to my PT patients that they try heat before stretching to warm up the tissue, and cold afterward to calm it down & relieve any inflammation. Take care & hang in there. Easy does it. Some careful manual therapy to work on the tight fibrotic tissue left by radiation might help as well. The PT can ask the doctor if that’s okay. Good luck!

  27. Thank you for this very informative post. I had DCIS and am 4 1/2 weeks post op. I had a Left Lumpectomy, sentinel node biopsy, and Bilateral Reconstruction with lift for symmetry. I am an RN and work in the Operating Room, so I was totally familiar with the procedure. It was the post-op that has taken me by surprise. Your post and the additional comments are very helpful.

    I had almost no pain in my breasts, but about a week post-op both my shoulders started to hurt. It is much worse in the morning and at times have been so stiff and painful that I sat at the side of my bed and just cried. Two weeks post-op, I was allowed to sleep in my normal position on my stomach which did feel much better. It was at that same time that I stopped the narcotic pain pills and switched to just alleve. (Which is what I have taken in the past for arthritis pain in my knees) I never lost ROM but it just hurt to move in certain ways. My plastic surgeon felt it was similar to a frozen shoulder but not quite as bad. I have been doing gentle stretching exercises and last week joined the gym at the hospital and my trainer set up a program specifically for me. Both my hospital and my physicians group provide some free Holistic Services for breast cancer patients. I have treated myself to frequent massages with a therapist familiar with breast cancer patients. Besides an overall relaxing massage, she focuses on my shoulders and gently stretches them. I do see improvement but until I read these comments, I thought it should be gone be now, and was beginning to think I was crazy.

    My other issue is the fatigue. I have good days when I feel like I could conquer the world, and then days when I can hardly get out of my easy chair. I was expecting a slow but steady improvement. I was so thrilled when I had my first really strong day, and then so disappointed when the next two days I could barely do anything. I felt better when my doctor said that is normal. I am concerned, because I am supposed to go back to work in about 2 weeks. About the same time I am supposed to start radiation, and Tamoxifen, which I understand can both cause fatigue. But I have decided to just take it a day at a time and be grateful for the good days.

    Thank you, Linda

  28. Linda, I’m glad you found your way here. There are also a lot of posts on my blog about fatigue. One of them is ‘The “F” Word,’ found here http://accidentalamazon.com/blog/2009/08/14/the-f-word/. Cancer related fatigue is a huge problem for a lot of us & doesn’t always get the attention it deserves. Please let me know if I can provide any other info for you. xo, Kathi

  29. Hi Katie,

    thanks for your posts! i had a radical masectomy in october 2013 and everything was okay with me until about 2 months after that i started feeling pains on my shoulder that travels all the may to my neck on the right side of my body where i had the masectomy. i have been taken pain medications but the pains comes back after the drugs wear out.

    i am yet to go for chemotherapy or radiation. please advise on what i can do to relieve me of the pains

    Fify

  30. Thank you so much for your terrific site. You have helped me understand what is going on in my body from cancer treatment. I find many very unaware physicians out there and am running copies of your blog for them. You are fabulous.

    I’ve had cancer several times–first from age twelve to eighteen when I was paralyzed from the waist down with a three inch ependymoma. Seven hour scraping of the spinal cord. Three months of radiation in the old days when they just burned up and down the spinal canal.

    Now I”m ancient (73). I’d just about gotten through breast cancer–I thought–when it returned in right axial lymph nodes. Faslodex brought my oxygen sat down to 70 for two months. Arimidex disabled me so I had to use a walker. (normally I would walk 40 min to an hour a day.)

    Today I completed a series of 33 radiation treatments.

    I think drinking alot of kombucha, taking nattokinase, and n-acetyl cysteine may have helped ameliorate symptoms.

    Your listing of side effects is a great help. I’ve had many of them.

    Thanks so much!!!

    P.S. Where are the exercises listed?

  31. What about using prolotherapy for shoulder help once treatment is several months past?

  32. Suzanne, you’ve been through a lot!! There’s a link near the end of the post called Therapeutic Shoulder Exercise Pictures that leads to a downloadable pdf of exercises. So glad you’ve found the blog helpful. Good luck to you.

  33. What is prolotherapy?

  34. Prolotherapy, sometimes known as “plasma injection,” is done by injecting saline, sugar water, or plasma into the affected joint. This causes an inflammatory reaction and blood rushes into the area enabling the joint to heal itself.

    A veterinarian friend told me about it. He had this done for his knee, shoulder, and back. He was in great pain before the procedure and for about three days after he was immobilized. But now, no more pain.

    I will try it after a six week respite from radiation. I’ll let you know how it works for my shoulder pain.

    Thank you again for your terrific site.

  35. Kathi, Maybe I’m blinded by the light but can’t find the exercise pages. Could you please forward them somehow?

    You have been such a great help to us all!

    Suzanne

  36. LOL, Suzanne!! Certainly!! Here’s the link to a pdf from the post itself: . It’s at the beginning of the 3rd to the last paragraph, and there are instructions about how to follow the diagrams in the posts. If you have any questions, don’t hesitate to ask. I have other arm programs that I can link you to if you need something gentler. xoxo

  37. Oh, yes, I’ve heard that can work for some people. A cold pack or a hot pack works on the same principle, as does some resistive exercise. Good luck!

  38. Kathi, You are so kind to be so patient but I still cannot find the exercise pages. Are they with this Arm and Shoulder post? What is my problem?

    I am in quite a bit of pain with both shoulders now and take Celebrex for inflammation. My P.T. is a brilliant young angel who does give me some temporary relief by digging under my shoulder blade to unstick it and releasing my internal pecs as well. I think I need to ice more when I return home as the pain seems to double later.

    These bodies. Aren’t they something? Mine is very cute even at 73 but has provided me with many, many challenges through these 73 years. Next go around I’ll ask for something tougher.

    God bless. XOXOXO

  39. Suzanne, it’s a link. Just click on it, or right-click over it, click ‘copy shortcut’ then paste it in your browser window & it will open a PDF document that you can save to your computer!! :)

Leave a Reply