shoulder pain

duff0015

Hi ladies,

I had a lumpectomy, rads, chemo, Zometa, Lupron, Tamoxifen (switched to Arimidex for some time) and back on Tamoxifen for stage 1 bc (diagnosed almost two years ago).   Throughout this crap, I have had various aches and pains,  especially on Arimidex and Lupron.  Go off for scans every so often.  I think when the docs get annoyed with my complaints.  It is scary.  I definately don't feel the same and I know I am not supposed too.  Last scans were bone in the early summer (neg) and Ct chest/abdomen/pelvis at the end (neg). 

The last month (back on Lupron and Tamoxifen), I have been having left shoulder pain (site of lumpectomy/rads).  The pain is intermittent (worse with exercise), and is a low intensity, burning sensation.   I sometimes get burning pains in the hips too.  Much more prevalent in the shoulder though.  The rest of my arm feels slightly stiffer and heavier too.  Fingers feel stiff at times.  The burning shoulder bothers me the most.  Of course, rads onc says not related to treatment.  What could it be?  Rads/surgery?  Osteoarthritis?  I am in my early 30's.  Help!  I don't want to cry wolf to my onc again!  I feel like everytime I talk to him I complain of something new.  

 Thanks!   It's hard because no one understands and I know you gals too.  I wish you all the best.  

dawn2203

Hi, did you have your lymph nodes removed? I too suffer from time to time with an aching shoulder and a heavy arm, I had my nodes removed at the same time as my lumpectomy and excercise and lifting anything too heavy causes the problem. I also take tamoxifen and get aches and pains especially when the weather is rain or cold. Hope this helps. Dawn.x 

figsgirls

Me too. I did not have rads because I had a bilateral mastectomy. Had the nodes removed on the left side, and in that shoulder I have noticed that I have pain from time to time. Also tends to be worse when I do a lot of upper body exercise. I thought it was old age! Maybe not though!

I also get weird little aches and pains sometimes, in my legs mostly, which I do attribute to the Tamoxifen and my onc. says are nothing to worry about because they are mild and there's no swelling or anything.

JoniB

Count me in.  I had a lumpectomy and nodes removed from right side followed by rads.  Have shoulder pain, sometimes traveling down arm.  I refrain from any upper body exercise now.  I do walk my dog using my right arm and he pulls a lot - I am wondering if that is making it worse. 

Liz08

Count me in too.  I develped costochondirtis this summer and along with shortness of breath, this scared me to death to say the least.  Had chest CT scan, negative so diagnosed with costochondritis told it will resloved after 2 weeks of taking motrin.  After a few months costochondritis pain is gone, took alot longer than 2 weeks as the doctors said.  Still experiencing shortness of breath at times, primary doc orders another CT scan to rule of pulmonary embolism, negative.  Just saw pulmonogist Oct. 10th, did pulm. function test which came back fine.  Feels isn't cancer related. Primary feels it's radiation related. Now what do I do???

A few weeks ago developed back, hip and knee pain, saw oncologist she wants me to do physical therapy and may be see an orthopedistist. What complicates things is that I carry my 35 lb toddler on my left hip all the time and have been since March because my right side is my surgery side and lymph node removal side. Wearing a back support belt for support to do regular dialy activities or else extremely uncomfortable and feel burning and a kink in my back and sometimes pain radiates to arms.  I know that sometimes it there's issues with the spine it can cause pain to radiate.   Can't get in to see an orthopedist till mid. December at the earliest. Called physical therapy facility, never called me back after finding out I had breast cancer and no MRI or other imaging.  Now what do I do?  I just turned 39 this summer,  am in good shape, exercise regularly, not overweight but have alot of aches and pains.  This is so scary and frustrating and  very stressful.  One oncologist just wants to put me on antidepressants, she thinks that's my solution. The other oncologist thinks that I'll be fine since my cancer was caught so early.  I'm trying to be patient and not crying wolf all the time but it's hard not to.   I'm fine emotionally until I get aches and pains that don't go away.  After having breast cancer it seems like the aches and pains are complicated. Sorry for the rambaling and the typos but just needed to vent and trying to type really fast.

web_lady

Add me to the list. I was opened up for lymph node removal on the left side (but the pathology report said no nodes were in the sample) and I just started Arimidex this past Saturday. I also vacuumed my celing fans that day. Sunday I developed pain that radiaties from my left shoulder down into my arm. It's like a pinched nerve, in that if I move my head and arms into a certain position, the pain and pressure decreases.

I've heard of these estrogren suppressors causing body aches, but I have doubts that Arimidex could have caused this kind of pain within one day of starting?

I'd love to hear from anyone who found that this kind of pain was related to either the lymph node surgery or Arimidex, and what they did to relieve it.

artsee

Hello all....Wow, you guys all are feeling about the same. I had a lumpectomy no nodes but I can tell you one thing for sure. When Aromasin got totally into my system I have been feeling like crap!! I didn't know there were so many places that could ache and cause me pain. I feel like I'm 90 years old and keep walking every day hoping that that will eventually make it all get better but....NOT. All I can say is that these AI's suck the good stuff out of the bones and that's all there's to it.Don't think you have got cancer in other places please. It's the drugs and they are making my Osteoporosis worse than ever. I've got some decisions to make if I want the quality of life that I had before.

Artsee

duff0015

Thanks ladies!  It feels good to know I am not alone.  Terrible, isn't it?   Well, I pray that all of our discomfort is for a good cause.  I had 5 lymph nodes removed.   Actually, I did feel more achy as the weather changes and upper body exercise makes it more intense.  I have a toddler and carry on her on both sides.  I know I shoudn't on the left but I do sometimes... 

 Liz- I hear ya!  I am emotionally fine, until I have these aches and pains.  Unfortunately, it is frequent and the two week rule would have me in for scans ALL the time.  Onc feels I should move on and accept it.  Caught early, probably cured, enjoy life, etc.    I try.  For the most part, I do.  These pains are very frustrating and scary...  Don't want to cry wolf all the time either.  

 hugs.

SoCalLisa

I ended up with a frozen shoulder..I did get physical therapy for it and it worked..

But I did my "time" on Arimidex and had the aches and pains...I also used

Voltaren gel as a topical antiinflammatory.. 

donutswife2003

I am so thankful for this discussion board. I was beginning to feel crazy but now realize that everyone is having the same issues as I am. I too have bad shoulder pain especially on the side of the node dissection. I am sure my kids get tired of massaging my back but it does help for a period of time. I also noticed more physical actibity seems to aggravate it. Feels like being between a rock and a hard place!

web_lady

Just when I was happy that I was getting off the routine of Tylenol 4 times a day after radiation therapy, now I'm back on. I have to wake up at 5am take 2 Tylenol so I can get out of bed at 6am without extreme pain. I worry how long I can take Tylenol all day (not over the 4000mg limit) and not effect my liver.

My pain is mostly down the arm on the surgical side. I fell pressure in the shoulder, but not so much pain. Is anyone else having radiating pain down the arm?

carolynf

I have jumped in the boat w/you all.  I have had pain in both shoulders, more so on the lumpectomy side where I also had 7 nodes removed.  I have started going to physical therapy because the pain has landed in my thumb/palm area.  My PT said I do not have lymphedema which is great but what do I have and when will it go away???? I was told to take aleve/motrin but do not want to rely on pills.  I think I have had my share in the past year! I have also started going to a chiropractor which has helped the shoulder for a few days. Sorry to go on and on.

x1xMaya

Dawn, I was so glad to read your statement ... It made me relax a little bit with the little aches i've been feeling last few weeks !!!!! I have too the same symptoms as you do .... after going thru last year's Major Surgeries... they have removed everything and reconstructed me naturally with my stomach ... and took off a total of 9 lymph nodes ... and since 3 weeks the first winter cold has arrived ... I've been having soo many aches and I am very happy to have found this forum ~ Thank you ladies  ...p.s. i dont have any shoulder pain (thkfully)

Rene23

I am 5 years out, still on Femara though, and I can tell you that the shoulder/neck/hands/feet/knees/hips pains are still there, although not 100% of the time.  I also developed an "frozen shoulder" which I've had steroid injections and several rounds of physical therapy for, but it's still not right.  To be fair though, I have a job that involves using my right arm quite a bit and I think that has added to this hanging on. 

I did, at one point, change my aromatase inhibitor, from Aromasin to Femara.  I do think the Femara has been better (the Aromasin was Horrible for joint pains), but I still have way more pains that I know are Femara related.  It's a trade-off though, and at this point, I am planning on finishing the course.  The stiffness is worse at night, after I've been sitting a while.  But I do find that the more active I am, the better.  Once I get myself really moving, the joints are just fine - except the shoulder, I just don't know if that will ever recover.  

I have become osteoporotic since starting these meds, which is just one more battle.  

The 2 week rule is a good one to go by, but when it comes to joint pains, I know that mine are not going away in 2 weeks, but they do get better with activity and stretching, so that's the rule of thumb I tend to go by for those kinds of pains. 

Nicole4

I have extreme shoulder pain, I am 43 and had the same side lymph node dissection.  I had an xray this morning and I am beside myself in fear.  This pain is like nothing I have ever had before, I wake up at 3 am and can't get out of bed, I take two pain killers and they don't seem to touch the pain.  I lie there until 6.

I really hope that it is a combination of tamoxifen and cold damp weather....x my fingers

Nicole4

I had a call from the doctor today and the x ray came back fine, no signs of mets.  If the pain persists, she wants me to call my med onc to do a bone scan within two weeks.

My med onc does not order scans, he rolls his eyes when I suggest a scan.  He says that there is nothing I can do about mets anyway so there is no point.  MY point is catching mets early, if I can detect bone mets before they spread, I think it would allow me to get treatment and perhaps add a couple of years to my life.  The last time I requested a scan he said that he would do it if I was planning on getting married or buying a new house???  what about pain?  that is not enough of a reason?  It is very frustrating, I wonder if it is normal to get angry with your oncologist at one point.  He is running the clinical trial I am participating in so I will still see him for that every six months.

Now that I am finished herceptin and chemo, I may try to locate a new med onc at the hospital where my surgeons are. I will only need follow up appointments once or twice a year.  I feel they take things more seriously and are much more understanding.

I am still unsure as to what this pain is from, it brought tears to my eyes when I had that call...so happy

Best wishes to everyone

voraciousreader

nicole...I am sorry to hear you are in extreme pain.  There are several other threads devoted to shoulder pain.  You are NOT alone.  The first thing that went through many of our minds is that we had shoulder mets as well!  Regarding the medical oncologist issue, by all means, if you are uncomfortable with the way you are being treated, find yourself another doctor.

Furthermore, instead of blowing you off, the primary care physician should have recommended that you see an orthopedist.

The good news is if you "only" have shoulder pain, it IS treatable!  Check out the other shoulder pain threads and you will see that many of us, including myself, have had to be treated for shoulder pain.  Shoulder pain that wakes you up needs attention.  Rest assured that with the proper care, you will feel better.

Good luck!