just found out...

[rinaina]

I just found out I need a total shoulder replacement in my right shoulder. My bc was on right side and I received chemo, radiation and herceptin. Any chance radiation could have contributed to my right shoulder problems? I am told the shoulder joint is bone on bone and I have been in pain for over a year now. Never had a problem before this with it. I am 4 years from my diagnosis and over 3 years since radiation.

[whatz]

I have shoulder problems as well but mine is on the opposite side of my cancer occurence. I did not have radiation. Just like you though I did not have shoulder problems prior to bc last year. Mine apparently is not as bad as yours. My onc showed me some excercises to help strenghten that side (so definitely not a bone-to-bone situation on my side) i.e. I've lost range of motion on that side. I've wondered if the chemo has contributed to this myself.

[Bill]

Hi Rina! I'm sorry to hear about your shoulder pain. I've had trouble with mine over the years from too much working out, etc., and my clavicle bone rubbing my "shoulder" bone due to chronic inflammation. Is there any chance that you have a similar problem and a bone-trimming surgery may help?

[ElaineM]

Anyone needing shoulder exercises can go to the National Basketball Association website and get some shoulder exercises. Apparently basketball players have alot of shoulder injuries.
Regular everyday activities and normal aging can cause shoulder injuries and problems. There doesn't need to be a special reason like cancer, radiation or chemo

[rinaina]

Thanks for your responses. I now have 3 same opinions from 3 surgeons. I need a total shoulder replacement. It is the only thing that will eliminate my pain and fix the bone on bone situation. Bill, bone trimming will not alone fix it. Elaine thanks for the referral for exercises. I have exercises from the PT that I have been doing for the last year. Also had 3 injections this past year but the pain keeps getting worse. Not sure I am quite ready to face the long recouperation but I don't have a choice. The pain in intolerable and very disruptive to my sleep. I am bummed because I have had 4 surgeries in the last 8 years, one every 2 years. Enough is enough. I have never felt sorry for myself, even with the breast cancer diagnosis. However, I am starting to feel a little sorry for myself and worse yet I feel guilty for feeling that way. How much can one body take. First it was a four level cervical fusion, then it was a parotid tumor, thankfully benign, then it was the big BC, then it was a tumor on my parathyroid. Now this. I am so upset, frustrated and angry. Oh yeah, a bit depressed too.

[StephN]

Dear Rina -
I am so sorry along with you! However, this shoulder problem has been a drag on your life for at least a year now. The pain and loss of sleep contribute to the depressed and hopeless feelings.

Once you get the surgery process going, I bet you will feel a lift, even though you have the recovery to get through. If you will be free of the pain, it will make a big difference in your life.

My left shoulder has given me problems off and on since a rear end collision (I was hit) in 1984. It has become frozen twice from overuse or wrong use. That was painful and I needed a sports medicine therapist to help me regain my range of motion.

[Jackie07]

O-oh, I was diagnosed with 'cervical vertebrae degeneration' last fall after going to the ER several times because of vertigo. The degeneration is on my right neck. I've got chemo (twice 4-years apart) and radiation to my right breast. I'd also played basketball intensely for over 10 years. One of these days I might need a 'replacement' procedure done also...

[rinaina]

Thanks Steph for your wisdom and wise advice. I know you are right about the pain dragging me down and the lack of sleep as well. I am really trying to psyche myself up for this. I never had this problem before but this time I think because they can only guarantee me pain free results and not full recovery in range of motion, I am hesitant. I am also skittish because it seems that all I hear is how many problems others have had even though they had the surgery. The shoulder is a tricky joint. Unlike the hip and knee, it takes about 14 different muscles and tendons to make the shoulder move so it is a more complicated joint to replace. I guess what I have to focus on is this will render me pain free and realize I can live comfortably with less range of motion. I am working on it. I think because of my past history with 4 other surgeries I am just reaching my limit. The recouperation worries me too. I hope I can do it. Also I will need help initially at home and unfortunately, I can't count on my husband. He has been through so much with me and while he means well, other things take priority in his life such as work, which I understand, and golf, which I don't understand. I guess this is just the straw that broke the camel's back so to speak.
Jackie, don't worry until you have to. I have an auto immune disease called Sjogren's that may be the cause of this and in talking to drs the radiation I had most likely didn't cause this. I am pretty sure I didn't have that area radiated because I had a sentinel node biopsy only and that is the only node they removed because it was negative. I don't know for sure about the radiation but it makes more sense it's more likely due to the Sjogrens so don't you worry. I will be consulting with my rheumatologist about this as well to gain more insight on the possibility that it could be Sjogren's related.

[ElaineM]

rinaina,
it may seems like you are starting an uphill battle. It may not always be easy, but it is important to keep your eyes on the summit of less pain and better health.
Feel free to drop by if you need a "shoulder" to lean on while yours is on the mend.
Take good care of yourself. We will keep our fingers crossed for you. Let us know how the surgery and recovery go.

[Jackie07]

Rina,

Thank you for trying to relieve the worries for me. About golf, let the guy go play as much as he needs to. It relieves stress, increase his physical strength, takes his mind off the 'cancer' thing. Hubby does that once a while - especially when he plays with his buddy, he feels much better about life... It's almost like a 'drug' - I think the endorphin get them the 'high'.

Hang in there, the surgery will take care of the problem. Before then, rest well and know that we are all behind you.

[caya]

Sorry Rina to hear of your shoulder woes - it seems it "always something," isn't it?
I can understand your frustration - but hey, just remember, it's better than the alternative.

Sending you big hugs.

all the best
caya

[Catherine]

Rina,

A long-time male friend of mine now age 62, had total shoulder replacement at age 59. He is doing very well and has been very happy with the surgery. He is a tall guy who played all the major sports in high school years and years ago. I hope all goes well with you. Just wanted to share a success story....but he does not have the cancer part to compare apples to apples. His surgery was a complete success.

Thinking of you,
Catherine

[Sheila]

Rina
You have had quite a year.....hoping the shoulder gets resolved, and we can do lunch when everyone is up to it...I miss out get togethers!
Where will you be having the surgery?

[Lani]

rina have you had steroids, both with your chemo and for your Sjogrens?

It can cause avascular necrosis of the humeral head, just like it can cause avascular necrosis of the hip. The hip is worse, as it is a weightbearing joint(unless you walk on your hands, in which case both would be equally bad!)

I recently saw an article that rituximab (an earlier monoclonal antibody than herceptin even,usually used for lymphoma) is effective vs Sjoegren's (sorry I don't have an umlaut key, or if I do, I don't know how to use it!)

I assume your bone on bone is the humeral head on the glenoid, not the A/C joint on itself ie the need for the total shoulder vs the trimming or resection of the joint Bill referred to (apples vs oranges)

Have antiinflammatories helped?

Have you had a diagnosic injection of your shoulder and related tendonshealths etc (different from a therapeutic injection?)

They use just local anaesthetic (can add the steroid later when then know which of the various areas are the cause of your pain) and place it one by one in each of the areas which might be the source of your pain and then ask you to move your shoulder and see if it hurts. Process of elimination.

It would be a shame to have your shoulder replaced if all your pain came from the biceps tendons sheath only or the A/C joint only (or a combination) or as a result of arthritic spurs and degenerative discs at the levels of your neck below your fusion (after one fuses parts of the neck, the other parts have to make up for it by moving more and they wear out faster!) Have you had your neck re-MRI's recently to see if any bone spurs or discs are pressing on the nerves exiting your neck going to the shoulder on the same side as your pain?

Sounds like it wouldn't hurt to try to do everything you can BEFORE agreeing to the total shoulder replacement to be AS CERTAIN AS YOU CAN BE that it really is the source of your pain and not something else that won't be helped by the surgery, as otherwise you may end up with perhaps less range of motion (they wouldn't promise you about that), perhaps some complication and perhaps still have your pain!

Are the surgeons you have been seeing specialized in shoulders only?

I sure ask a lot of questions, but I don't see how it can hurt if you ask a lot of questions, too. There is a theory that what wakes up the "sleeping" breast cancer stem cells is inflammation and the perceived need for the healing response including VEGF for angiogenesis. If that is true, it might imply that it might be wise to only do those surgeries necessary and do the smallest surgeries necessary to do the job (not a bad idea anyway). I wish Judah Folkmann were still alive. Until his premature death about a year and a half ago, he still operated as a pediatric surgeon and was a pioneering cancer researcher specializing in antiangiogenesis. Now he would be a man to ask!

Feel free to look up and watch the You-tube collection of his many wonderful lectures.

Hope this helps!

[rinaina]

Thanks Lani for all your useful input. I have not had my neck re-MRI'd. I have, however, had 2 different MRIs on my shoulder as well as xrays and they show the humorous ball and glenoid bone on bone and loss of all cartilage, severe osteoarthritis, bone spurs and a chipped bone just kind of floating, as well as extreme wear and tear of the bones. You have me very worried now about this surgery re-activating the cancer. I have already tried therapy and 3 different injections and have lived with this pain for over 1 year. I have asked if there are alternative choices to a total shoulder replacement and consistently from 4 different surgeons and my rheumatologist the answer has been NO. With that said, they all have told me that they are not trying to talk me into surgery, it is still elective surgery, but that it is the only way to fix the joint and rid me of the pain. They said that if I can live with the pain and loss of mobility then I can wait, however, there most likely will be additional deterioration over time. I can't believe in one years time how much more severe the problem has become and how much more deterioration has taken place. I was not bone on bone a year ago. Just some mild arthritis. I wonder if caring for my father for 4 plus months contributed to the rapid decline in my shoulder. Caring for him took a real physical toll on me. I have nothing to gain by waiting to do the surgery later except for more pain and suffering. I found out that shoulder replacements only last about 15 years in 75% of the people which means in my lifetime I will have to have a second replacement which is upsetting. Plus the second one is not as successful as the first one. Very troubling. I am only 58 yrs old. The average age of someone needing a shoulder replacement is 65. I am just so upset.

[Lani]

THE SHOULDER IS NOT NORMALLY A WEIGHTBEARING JOING BUT IF YOU HAD TO DO A LOT OF LIFTING TAKING CARE OF YOUR FATHER, THAT MAY BE A DIFFERENT STORY.
Again, Steroids can cause the bone of the humeral head to lose its blood supply then it starts to collapse and flatten (with weighbearing), the joint gets incongruent and wear and tear of the cartilage speeds up. Have you been on steroids? It can turn into a bilateral condition, so keep that in mind as a replaced shoulder may not be able to lift and carry well and you may end up with some limitation of motion which you'd normally adapt to by using your other arm as long as it stays unaffected.

I am not trying to frighten you or depress you, just have you think everything through ahead of time exploring all the possibilities and future possible changes in your condition so you have no regrets in the future.

Hope this did more good, than harm!

[rinaina]

Lani, while caring for my father I did have to do quite a bit of lifting as he was somewhat dead weight while recovering from 2 surgeries back to back one being a knee replacement. I did have steroids back in 1977 when first diagnosed with Sjogrens on and off for a period of 2 years but my dexa scans always came back perfect. I had 3 steroid injections in my shoulder in 2009 and a few many years ago in my heel. I also had epidural injections in my cervical neck back in 2002. You aren't scaring me but I don't know that I have any other options but to have the total shoulder replacement. I have had 4 drs total tell me the same diagnosis independent of each other. What other options might you be referring to? I do know what is ahead of me and I do know that I will not be able to do any further heavy lifting with the replaced shoulder and that my mobility and range of motion may not come back that much better then it is now. They said maybe another 40% at best but they did guarentee that the pain would be gone if I had the surgery. I am well aware of the long recovery ahead of me. I don't think I will have any regrets doing the surgery as I have tried everything else there is for the past year plus. Therapy, injections and more therapy. The shoulder declined rapidly in one years time and Sjogren's may have played a role in the arthritis.

[Lani]

rina-- A DEXA scan could easily be normal on someone whose steroid usage caused avasular necrosis (osteopenia/osteoporosis from steroids and avascular necrosis from steroids are two very different things) Avascular necrosis can happen many years later, as well.

YOu may very well have heard of avascular necrosis of the jaw caused by bisphosphonates (that is another nonweightbearing joing, but one many of us use quite often!!)

The test which best detects AVN, especially earlier than other tests and before collapse has taken place and sometimes before symptoms have occurred is an MRI>

I only questioned whether an MRI had been done to look at the health of the bone in your OTHER humeral head, ie whether it was beginning to show signs of avascular necrosis as well. I say as well not knowing that that was the cause of your current shoulder's problems, but aware that it can be the cause of quick deterioration to bone on bone in a relatively nonweightbearing joint. I only thought that bit of information might alter your decision and maybe your doctors' recommendations.

Did you have steroids with your chemo as well?

What medication(s), if any, are you taking for your Sjoegren's or is it relatively quiescent at the moment? Have you been allowed to take antiinflammatories and have these made any diffference? Has your pain gone away at all after the injections?

Just because your shoulder MRI and xrays look horrible may not mean those
changes are the cause of your pain. If injections given into the glenohumeral joint did not help (vs. helped by wore off) might not a repeat MRI of the Cspine help to rule out other causes of your pain? If it did relieve your pain, but just wore off, then I can see why you weren't in the mood to re-examine your neck when the local anesthesia had proved to you your pain could be relieved if that joint was made dumb.

I will be travelling for the next three days or so, so if you don't hear from me it may just be I don't have good internet access. In the meantime, best of luck!

[Rich66]

Some alternative approaches to reduce inflammation are Boswellia and curcumin. After years of discomfort, my mom felt significantly better in her joints after beginning a Boswellia regimen (800mg, 3x daily).

Another issue with a surgery is the potential pitfalls of general anesthesia because of opiate use.