Sunday, March 6, 2011

Post-Mastectomy Problems

Regular readers, bear with me as I do a quick recap for newbies:  Immediately after my breast reconstruction surgery, my shoulder began to hurt.   At my two-week follow-up, I told my plastic surgeon, who said give it time and if it didn't go away, he'd refer me to physical therapy.  It didn't, he did, I went. My first two visits were with some nice but granola-y ladies who iced my shoulder and put a tens unit on it and taught me to stretch my neck. They thought I had "impingement syndrome."  Their icing did nothing, and the pain increased to "I'd rather have cancer than this" levels, so I went to an orthopedic surgeon for a real diagnosis.  He, after putting me in his infernal machines,  diagnosed me as having a level one SLAP tear.  He proposed a month of physical therapy and if it didn't improve - surgery.

But, it didn't sound right to me.

Everything I read online about this SLAP tear said that there is only mild to moderate pain, and mostly upon moving.  People seem to go about their lives pretty well with it, and a level one SLAP tear doesn't even need to be treated most of the time, it can just be a sign of aging.  Athletes talk about throwing balls through the pain.  Often, people don't even know they have it.

Well, I can't throw any balls.  I can't move my arm.  And, the pain is incredibly intense. I am not kidding or exaggerating, it's really, really bad.  My arm hurts all the way down to the wrist and into my back, and any motion causes a cramp-like spasm all through it.  Sometimes I just have to stop and wait for the pain to go through me.   There is no position that is comfortable and it never goes away.

But, I have to believe the doctor, right?  He's the guy who went to school for ten years, not me.   I began to think cancer had turned me into a hypochondriac; had changed me into somebody who thinks mild things are now major.

Anyway, armed with a diagnosis, I vowed to do physical therapy diligently, and take the pressure off this shoulder and the tear so I wouldn't need surgery.  I'll show them who's a wimp.  If they want me to exercise, then by God, I'll exercise.  (That's how bad I  want this terrible pain to go away.)

I went to the new physical therapist located in downtown Sacramento - a male this time.  This seemed like a much more professional set-up than the last place, and I could see all kinds of exercise equipment and people working out and all the stuff I've hated all my life.  Not a margarita anywhere, nor a book or couch.  I began to long for my granola ladies and taking a nap with a tens unit on.

Mike examined me - put me through some painful range of motion tests, and then he gave me his opinion, which was very different than the doctor's. He warned me he doesn't diagnose, but he does see people every single day with what I have:

Adhesive Capsulitis, commonly known as a Frozen Shoulder.

It fits perfectly.  The gradual onset of symptoms, the severe pain, the inability to sleep, the loss of mobility - it all makes absolute sense, and is exactly what I have experienced.  The SLAP tear isn't causing my problem, it's the frozen shoulder.

And, it's been known to happen to women after mastectomy, and it seems to have an autoimmune component to it - your body starts attacking your joint.

I was very relieved when he told me.  Nobody can understand why I feel that way, because it takes two years to recover from this, and I will be disabled for those years. For me, it's a huge relief knowing what it is.  I never believed the SLAP diagnosis.

We do know our own bodies, even when they go wrong.

Adhesive Capsulities has three phases.  The first phase is characterized by severe pain and increasing stiffness of the arm.  That lasts four to nine months.  According to my physical therapist, nothing should be done for you in this phase - do nothing to cause yourself  pain, because that can increase the inflammation process.  In the second phase, the pain begins to lessen,  but so much scar tissue and inflammation has built up the shoulder joint is completely stiff.   This also lasts from four to nine months.  The final phase is the unfreezing process, which also takes the same amount of time  Pain is milder and you gradually get your range of motion back and most people recover 90% of their ROM.

People will recover even without doing physical therapy.  But, once you are in the latter phases, you can return to normal life quicker if you do PT, so he told me to come back in a month for measurements and then in a few months for therapy.  He suggested I buy a pulley system and .use that in the hopes of keeping what ROM I have now, but admonished me not to hurt myself.  He also said to roll a basketball around on a table for ten minutes a day.

I love this:  He said take lots of hot baths and read a lot.  That is my kind of physical therapy.

It has been 3 1/2 months since my surgery and it's still extremely painful, so I am still in Phase I.   I am nearly unable to move my right arm.  I can't move it behind me at all:  I couldn't scratch my butt if you pointed a gun at my head.  Putting my hands on my hips to do the mother/wife stare-down?  Impossible.   I can only raise it sideways to the level of my hip if my arm is straight out.  I can raise it in front of me almost to shoulder height, but not above my head.  It isn't pain that prevents those movements - my arm just won't do them - the shoulder is stiff and tight.

But, I am in serious pain still and sleeping is next to impossible.  Worse, I can't throw the covers off me if I get a hot flash; my arm doesn't  have the kind of super-human strength it takes to toss a blanket.

The frozen shoulder is keeping me hot.  Miserable and hot.

As it is, I can't blow dry or flat iron my hair and can only wash it with the left arm.  I'm getting close to the one year anniversary since my last chemo and I want to style my hair!    I can't tuck in a shirt.  I can't snap a bra.  I can't shave my back.  Wait, I mean I can't scratch the back of my head.  I can't button my jeans, which is a problem, as you can imagine.   I can't carry a bag or a purse or anything with my right arm. I can't wear a pull-over, everything has to be button-up, so I can ease it over my useless arm.  I can't drive long distances as I can only turn the wheel with one arm. I can't hail a taxi, which will be a big problem if I ever go to New York.  I can't wave bye-bye to the Sacramento Kings.

Here is the worst:  I have to take my husband shopping with me.  I know you ladies are nodding in solidarity at the horror of that thought.  I've lost some of my independence and now I get to hear comments about how much things cost.

Most alarmingly, it is getting harder and harder to type or use the mouse.  I've a USB extension cord for work and have moved my mouse to the edge of my desk so I don't have to reach, but even that is getting difficult.  Pretty soon, I'm going to have to put it on my lap.

I am right-handed and it's my right side, but I'm already adjusting.  I'm getting good at reaching out with my left arm to take something or open a door.  Before you know it, I'll be ambidextrous.

So, there is my post-mastectomy story.  Like with chemo, at least I know that it will some day be over, and I'm okay with that.  As long as my doctor keeps prescribing pain medication, that is.

I have been handed dozens of little brochures during the course of my cancer, and none of them mentioned adhesive capsulitis.    It is not preventable so it wouldn't have mattered, but I had an x-ray, an MRI and an MRI arthrogram for nothing.

Before, I thought the term "frozen shoulder" was just a catch-all phrase encompassing any shoulder problem or stiffness - I didn't realize it was a real disease on its own.

Well, I do now.

I am going to document the process through pictures, so I'll take some illustrating how much my arm moves and then I'll post them here like I did with my hair.    Because this does seem to happen to women after mastectomy, it's part of the cancer experience so you all are just going to have to put up with my whining until it heals.

Sorry about that.


  1. So sorry to hear about the long recovery time...but..hooray that you know what it is (?). :)

    I was curious: you said your PT wasn't "diagnosing" you but went on to offer a very plausible diagnosis. Will you have to go back to any other MD's to confirm that this is the right diagnosis, and the labrum tear wasn't? This is pure curiosity, just wondering if for insurance purposes or for 2nd opinion purposes you plan to get confirmation that this is definitely it.

    Best wishes!

  2. Been following your blog for a while and thoroughly enjoy your writing. I was diagnosed with DCIS in September 2009, had unilateral mastectomy, and after about a year of "no issues" started with shoulder pain in October 2009. Unlike you, I did not undergo chemo and reconstruction surgery, but also have (what I think is) frozen shoulder. I had a frozen shoulder on my other arm about 4 years ago, and it feels very similar. When the pain got to be too bad where I couldn't sleep, I started seeing a massage therapist. After each treatment I was able to sleep pretty well for the next two nights. I am now getting massages twice a week and my range of motion seems to be improving and the pain has lessened. With the other frozen shoulder I had a "manipulation" done by an orthopedist and the constant pain went away almost immediately. This was followed by about 2 months of physical therapy to get range of motion back (stretches and therapy hurt, but the constant pain was gone). Just wanted to share some possible treatment options and hope you are able to resolve your shoulder problems soon! Best wishes

  3. Ann, I was stunned to realize that you had a frozen shoulder. I should have thought of that because I once suffered with that myself. I couldn't even turn my head. The orthopedic doctor gave me a giant shot right into my shoulder then sent me to PT for six weeks. For some reason whatever shot he injected into the joint gave me enough relief so that I could turn my head again. I remember the physical therapist putting great stock in using a heating pad before he began his work on my arm. He encouraged me to use one at home. I think I slept with it just so that I could actually sleep with no pain. I still have some residual pain, but nothing to cry about these days. Now that you know what it is, I guess you are relieved. I certainly feel your pain! -Megan-

  4. That totally sucks. I'm so sorry for your pain.

    One thing I have to say, because it has helped me so much, is that you might be able to mitigate the immune system complications if you can get your doctor to prescribe Low Dose Naltrexone (naltrexone at 4.5mg, it has to be gotten from an experienced compounding pharmacist). LDN regulates/normalizes immune function, and has the nice side effect of increasing your endorphin production, so that you don't feel pain so much and your energy levels are increased. The caveat is that you have to go off opiates/narcotics, which of course is difficult for some people. But I think in your case, with the frozen shoulder, the sacrifice may be well worth it.

    The other gals are giving good advice, too - I hope that some combination of what you are doing and anything you choose to do in the future will give you relief. Take care of yourself, dear girl!!

  5. Hi Ann! So you DO have frozen shoulder. I hate to be a "told-you-so" but, if you recall, I commented about that possibility when I read your first description of your shoulder symptoms. It's what I had/have, too, and I, too, was first diagnosed with "impingement syndrome" which was either a precursor or was actually frozen shoulder. And both mine are frozen. First my left shoulder (the side I had my breast cancer on), soon followed by my right one. TOTAL DRAG!! It makes everything difficult. I sometimes would get stuck in clothes I had stupidly struggled to put on and would have to wait for help to arrive to free my arms, which had become trapped. So many little troubles ... reaching cupboards, closing car doors, getting out of the tub. My frozen shoulders started shortly after I finished radiation and about 4 months after I finished chemo. Apparently it's quite common among we breast cancer peeps but nobody told me that. I only learned that AFTER I got frozen shoulder and did a little research of my own.

    I found a very good massage therapist who made a lot of difference and while my shoulders have, I think, mostly thawed, I have a lot of work to do to get back even most of my range of motion. I can tell you, though, that the pain does subside after you get through the misery of stage I.

    The other things I found helpful was soaking my shoulders in Epsom salts and taking Enzymes. Enzymes helped me sleep at night.

    Good luck!

  6. I was referred to this article about your shoulder by someone on the site in the Canadian thread forum.

    I was dx with breast cancer in 2009, and finished chemo and radiation in 2010. I had 2 surgeries in the fall of 2009, of which one surgery consisted of a sentinel node biopsy.

    In September 2010, I started to have some difficulty with my right arm (yes this is the side the breast cancer was on and also the side the sentinel node biopsy was done on), when I tried to reach with my right arm, feeling of discomfort. It was not until November where I lost the ability to reach above my head, I can just reach up in front of me and that is it. I have difficulty when it comes to trying to put my arm up to wash/dry hair with my right arm. I also cannot put my right arm behind me. Have difficulty pulling up pants on right side of me and ect....

    Oh I never had a MX, but I did have a 2 lumpectomies.. so wonder if it is still possible for me to also get adhesive capsulitis?

    Please feel free to privately email me at

    Really very frustrated with the limited ability to use this arm now into nearly 6 months.

    Thanks, Charmaine

  7. I am sorry to hear about everything you have been through. I was just diagnosed with frozen shoulder after months of an ortho calling it impingement syndrome. My rhumatologist diagnosed it - two months after the onset of pain I also developed Sweet Syndrome and I already have Lupus and Hashimoto's diseases. I hope you feel better soon but I know exactly what you mean our ROM is exactly the same and the insomnia and cramping is devastating!

  8. That just exactly describes what I am going though too. Phew I thought it was me imagining things.n

  9. I had breast cancer surgery in 1996,(left side) had chemo, 2 lymph nodes out of 6 cancer....I had my right breast removed no cancer (my choice) 2011, now have tingling in both pinky fingers, elbow pain left side , shoulder blade pain on right side....bicep pain both arms, have lympodema in left arm since my surgery 20 years ago. Tire very easy, have problems sleeping....Do not left with my left arm, all Iv's and shots, I have had and blood pressures in my right arm. Got along great with Chemo, not sick just very very tired....I am 67 so thought a lot of this might be age....

  10. I tried mastectomy style bra because I was tired for years of bra straps slipping off my shoulders. This is the most comfortable mastectomy bra I have had in almost 14 years. Stays securely hooked till you are ready to take it off. Wide band is more comfortable. Pockets keep you in place. I plan to order bali 2284

  11. So glad I found this - cause I thouht I was crazy. I have had a mastectomy, and apparently have shoulder capsulitis. Worst pain of my life, started about a month after the surgery. Pain never went away, any movement on that side caused severe, tear producing pain. I totally empatize with your statement that you simply stop moving until the waves of pain go away.

    I was sent very quickly to physical therapy, where my thereapist immediately told me he believed I had "frozen shoulder" (though, he also said he was not allowed to diagnose). Therapy was extremely painful, and extremely effective. I did about 4 months of thereapy, and got about 90 percent of my range of motion back. I still have pain, but it is so reduced that I can live with it. My doctor wanted me to go for a second course of PT, I just couldn't do it - it was painful and time consuming and I"m pretty happy with the condition I'm in now. Its seems to be getting better, and I have less pain and greater ROM all the time. I do still have some pain almost all the time, but nothing that makes me cringe or cry. I still do my streching exercises, and use my damaged arm as much as possible. My therapist basically told me it was just a matter of time, more time, more improvment, and just keep using the arm - and so far that's worked. I wish you well, and thanks for making me feel less alone.

  12. It is interesting to read the different reports. My primo-doc diagnoses my adhesive capsulitis after my bilateral mastectomy and recommended that I keep moving through the pain. Basically it was this: "If it hurts, do it again.". And it did, and I did. She gave me a set of exercises specific to this problem and I have done them. To go slowly, but to push it further each time She warned that if I don't do the movement the tissue will stick together (thus, the word "adhesive") and will be hard to separate later. I know someone who had to have hers surgically unstuck, which she said was very painful, and that was followed by a very painful physical therapy. Now, almost two years later, I still have it, but not nearly as badly, and I have maintained full range of motion. It is especially painful in the morning, and what I do is sit up on the edge of the bed and make 100 shoulder circles. That does the trick for me. I have during the past year developed pain in my larger thumb joints. It does not interfere with anything that I do, but I wonder if it is somehow related to the shoulder, as it is down the line from it.

  13. I am glad I came across your article I had bi lateral mastectomy and delayed diep flap reconstruction. The pain after mastectomy wasn't too bad had terrible cording that had to be worked on but handled that OK but after diep surgery real misery with frozen shoulder and rotator cuff problems I have a high pain tolerance but this oh my give me a break. Just saw plastic surgeon today for follow up from second revision. All I would like is a good night sleep. At least I know I am not nuts.


  14. Hi there, I had a bilateral mastectomy in 2012 and my left shoulder, that wasn't affected by cancer, slowly froze at the beginning of 2014. Now, 2016, I have my right arm, that has some lympedema in the top of it, is giving me pain from the elbow down to my hand and my entire shoulder blade area also is aching. Wouldn't necessarily call that pain, considering what I'm experiencing in my arm. Still managing to sleep but laying on my right side just seems to increase the pain for the following day. After searching and searching for information about what this pain may very well be, I came across your blog post. I am having a CT scan and bone scan done this week, but have a feeling that what I'm experiencing is as a result of my surgery from 2012. Makes sense, really. Having our breast removed, lymph nodes removed and any associated nerve damage is going to affect those areas of our bodies. Just wish, as no doubt everyone else that has commented, that surgeons would prepare us for this probability. Going to try taking Glucosamine, Fish Oil, Tumeric, Ginger to help lessen the inflammatory condition that is very likely going on. And, as for my right arm, if its moving into freeze, then I'll have to become patient with it. Godamn hard, when you're only 51, having to face restricted work opportunities whilst its all going on. I am really grateful to have come across your blog. Mainly to see that others are having the same issues. Thankyou xx

  15. So glad I found this although slightly depressing if what I have is the frozen shoulet. I had mastectomy and die reconstruction on 11th June. After around 4 weeks and doing physio the pain got so bad. Can't sleep with the pain and has had me in tears and I don't do crying and feeling sorry for myself! Have now been referred to orthopaedic surgeon next Tuesday so be interesting to see what he says. All my symptoms are exactly the same as yours.

  16. Hi. I had bilateral mastectomy sept 2015 and by November I had a right frozen shoulder. PT said too frozen really to work on so I had manipulation under anesthesia that worked well. Then PT to keep it loose while healing. Now I have different pain in left shoulder. Hurts when I cough and walk. Work up in progress. We'll see....

  17. I'm having manipulation soon. Will see how it goes x


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