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Medical Forum / Diseases and Disorders / Breast Cancer / October 2003

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Update...shoulder pain, etc...

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Kaye301 - 06 Oct 2003 01:34 GMT
Boy, am I bushed (or tired for those whose lexicon doesn't use that term that
way)--but for good reason.  My husband I got up before the sun and joined 7
other woman.  We hiked 14 miles at near power-walk speed, stopping only for 2
short breaks and traffic signals.  We are in training for the Susan G. Komen,
3-day, 60 mile, breast cancer walk next month.  Today's walk has me much more
tired than last week when we went 11.5 miles.
I saw my 2nd opinion oncologist this past week.  My tumor markers seem to be
even better than usual.  My CEA was 1.7 and my CA 27-29, although in the normal
range last time, went down 13 points in the past month and was 16.  The only
thing different, medication-wise, was that I had added a statin drug to my
medication regime.  I will be getting another prophylactic Zometa infusion next
week (osteoporosis prevention, although possibility of bone mets has not been
completely ruled out).  My alkaline phosphatase level, however, is very
good--63.  Last December it had gone up 20 pts (highest rise ever) to 116 in
one month, 10 weeks after I finished a year of Herceptin.  (Normal was 121  or
less).  The following month I had a Zometa infusion and began taking
Doxycycline regularly.  The next month the alk phos. level stabilized at 114.
The following month it went back down to the 90's where it had been for the
previous 6 mos. before it had gone up.  (It went to the 90's during the time I
had 3 unexplained attacks of acute pancreatitis, each 13 days apart--never had
it before or since).  However, before that it had been in the 70's and at time
of dx--high 50's/low 60's.
Anyway, the month after it went down to the 90's, it decreased to the 70's over
the next few mos.  Then for the past 2 mos. it has been in the 60.s.
The problem that I have been having--is that I have been having shoulder pain
for almost 2 mos.  I first had it almost one year ago and then intermittently
afterwards--same area.  Then in August I did some light gardening, and it has
been hurting since, and had been getting worse.  I was bounced around between
dr's--nobody wanted to be 'responsible.'  I saw an internist through our HMO
(non-profiti) whom I never saw before.   She ordered an x-ray and ekg (because
it was left side) and an ultrasound of carotid artery.  All were normal--at
least that was what I was told.  Pain worsened.  Husband calls oncologist.  He
said that there had been a bone spur on x-ray and further tests should have
been ordered.  He orders them. Leaves message on answering machine--results
showed degenerative changes.
Meanwhile pain is increasing, worse at night.  One day it hurt to brush my
teeth or pick up a glass of water.  I was already on 200 mg. of
Celebrex/twice/day.  We do research and find online articles that talked of
shoulder mets--one said that 18% of those with b.c. get mets to shoulder; other
talks of gal with shoulder pain for 2 mos.  Bone scan and MRI were normal but
PET showed mets to upper chest wall.  
Last May a private (non HMO) internist recommended PET.  We decided to hold off
at that time but called him to write referral.  He wrote letter to onc.
(although because of passage of time, all facts weren't quite 'right') and also
'script for PET.  We decided to do it on own even if not approved by HMO.
Oncologist turns down request for PET but prescribes physical therapy.  It took
almost 6 weeks to get call to set up appt. for PT.  Meanwhile I have PET.  It
shows degenerative changes more in arm that I reported that it hurt in.
However, PET was done by a fellow student.  He wrote down erroneous clinical
hx.  He said patient 'may have lymphedema in left arm.'  I have lymphedema in
my right arm--had sleeve on at time of appt--and have to wear custom sleeves
24/7.  However, I told him that problem was pain in my LEFT shoulder and upper
arm.
After we got back PET, I called and faxed in letter requesting corrected
clinical hx and re-evaluation of films based on correct info.  I rec'd call
back from head nuclear radiologist--apologizing--said he would change clinical
hx but not report (my daughter in med school said it is illegal to change rept)
and offered me free PET in 3 mos.  I am a bit uneasy about that--wondering if
something really is going on besides degenerative changes.  6 mos ago when I
asked onc. how one differentiated arthritic activity (degenerative changes)
from bone mets, he didn't answer my question.  Instead, he said it didn't
matter in terms of long term survival if one were treated for 3 years or if you
waited one year and treated for two.  So, basically, degenerative changes may
mean bone mets.  REcent MRI's of lumbar spine show either a mass or cyst.
Although they think it is a cyst, they cannot rule out mets.  
So, as far as bone mets--I have no clue if I do or don't have 'em.  However, I
do know that I am at very high risk for developing mets based on my pathology
report which included 3 types of aggressive breast cancer (one of which
supposedly has a short relapse-free survival time), 9 pos. nodes and extensive
lymphovascular invasion as well as Her2+  In addition, I once read that 67% of
those dx'd with breast cancer eventually develop it in their bones--and am
guessing those are older stats--but still.  So, based on likelihood, it seems a
no-brainer, that there is a greater chance that I do have mets as opposed to
not having them.
My second opinion onc. offered me another prophylactic Zometa infusion and
increased the Celebrex to optimal, safe, anti-tumor dosage.  He was one who had
prescribed statin drug.  Interestingly, I started statin drug, the day after
the PET scan, and withing about 10 days, the shoulder pain lessened.
Coincidental?  Perhaps...
I finally saw my internist on Friday.  He recommended cortisone shot.  I
decided to try it.  It might have helped a little--not much.   I am having a
hard time raising it above shoulder level.  I think they should have done an
MRI...We shall see...am wondering if things will ever get a little less
complicated...
bell-lady - 06 Oct 2003 02:21 GMT
Kaye,
I had cortisone for hip pain, and they told me to wait 1-2 weeks to feel the
improvement. Indeed after about 8 days it is now feeling less painful! Don't
be too hasty to rule out improvement, hang in there!

Ann
Kaye301 - 06 Oct 2003 07:12 GMT
Ann wrote << I had cortisone for hip pain, and they told me to wait 1-2 weeks
to feel the
improvement. Indeed after about 8 days it is now feeling less painful!  >>

Thanks for sharing--that is so good to know.  I once had a cortisone shot for
'tennis elbow' and the improvement was immediate.
Jamie - 06 Oct 2003 07:15 GMT
So let me get this right....because I had a bone scan a year ago which
showed arthritic spots in places I had no idea!  The report listed my
shoulders, knees (sheesh...I'm 51!  What 51 year old doesn't have knees that
hurt!), my hips, my toes for crying out loud! my ankles....none of these
ever hurt before last month.  I'm a year from a double mastectomy with
recontruction finished in May of this year.  I hurt like crazy!
You mean to tell me that these 'arthritic places could be bone mets instead?
jamie

>  I am a bit uneasy about that--wondering if
> something really is going on besides degenerative changes.  6 mos ago when I
[quoted text clipped - 3 lines]
> waited one year and treated for two.  So, basically, degenerative changes may
> mean bone mets.
Tim Jackson - 06 Oct 2003 10:27 GMT
Your toe and ankle pains aren't mets.  Bone mets mainly occur in the big
bones, head and torso, typically spine, skull, ribs or hips.  They are rare
in the extremities, OK Catharine has them but Catharine is very special, and
more to the point already had mets in just about every other bone of her
body.  More likely you already had arthritis developing in those areas and
the cancer treatments have exacerbated it.

It is true that the bone scan lights up both for osteo-arthritis and for
cancer, but the radiologist will also look at the pattern of uptake, and
will mentally subtract typical arthritic patterns from the image.  The
implication is that your radiologist thinks your pattern of hotspots is
fairly normal for someone of your age and not indicative of cancer.  Like
everything else in medicine, it is a matter of judgement and not a hard and
fast rule.

Tim Jackson

> So let me get this right....because I had a bone scan a year ago which
> showed arthritic spots in places I had no idea!  The report listed my
[quoted text clipped - 16 lines]
> may
> > mean bone mets.
Catherine - 06 Oct 2003 17:55 GMT
What would pain from mets feel like vs pain from something else?

I had been having aches and pains in my joints, especially my knees, ever
since my 3rd chemo.  Turns out, I had severely torn lateral and medial
meniscus tears in one knee along with degenerative damage.  All my docs kept
telling me was it was arthritis.  Deal with it.  I'm 43 and getting older.
I did, until it reached a point where I had to trade in my low to the ground
sporty car for one I could get out of, give away my sofa because it was too
low to the ground and start using a cane!  I started seeing the doc on a
regular basis about it and they FINALLY sent me to get an MRI.  I have since
had arthoscopic surgery to clean up the knee and I'm amazed how the pain has
gone away!

I have shoulder pain in my right side and can't lift my arm high anymore.
No lymphedema that I'm aware of.  It aches often.  The other side also aches
and I don't have a lot of strength in the left arm, which is the opposite
side of the surgery.  The docs say that is arthritis as well but now I
wonder if I should have that checked out further.  Or maybe I just need a
good massage?

How do we balance being afraid of mets and not turning into hypochondriacs
with normal aging?  When my knee started swelling behind the knee, it scared
me and I called the doc because I was afraid it was a blood clot.  He
wouldn't even see me and told me to go to the ER.  It wasn't and I felt more
like a fool then ever. Now, having the understanding of what was going on in
my knee, I know it was a cyst that formed because of the tears in the knee.
My family doc almost always shrugs off every symptom I have (including the
one in my knee) and doesn't seem to take me seriously.

It will be my 2 year anniversary for lumpectomy come January.   I don't
think about cancer every day anymore but everytime something is different in
my body, I wonder and I wonder if I should ignore it and I wonder if I
should complain until somebody validates that it isn't serious.  Anyway, I
know what you are going thru!

Congrats on the walk!!!!

catherine
Kaye301 - 06 Oct 2003 23:15 GMT
Catherine wrote << everytime something is different in
my body, I wonder and I wonder if I should ignore it and I wonder if I
should complain until somebody validates that it isn't serious.  Anyway, I
know what you are going thru!

Catherine, so good to hear from you.  I hope your daughter is doing well.
Re. the above, it is so hard to know.  My oncologists response re. not
answering my question re how one differentiates bone mets from arthritic
activity and saying that it didn't matter in terms of overall survival if one
treated bone mets sooner, really threw me for a loop.
My understanding is that stats report that about 2/3 of all women with breast
cancer eventually get bone mets.  I don't know what % get arthritis unless
everyone has some arthritic activity.
In my case, about 10 years ago, after a car accident I was told that I had
arthritic activity in my knees as well as other areas.  However, none of the
scans I've had since b.c. dx, report any arthritic activity in that area which
was clearly pointed out to me back then.  Do arthritic changes go away?  I
don't get it.
Yet, the scans do report increased uptake in areas that are common for
metastases to occur.  Other 'unusual' changes were also reported there.  They
do tell me that bone metastases can't be ruled out.
The philosophy seems to be that 'they' are looking at alternatives before
declaring these changes to be cancer-related.  That seems a bit incongruous in
terms of reality, however.  While nobody wants to hear of metastatic disease or
further advanced cancer, the reality is that the stats report that early
treatment of metastases doesn't make a difference in terms of long term
survival.  I think those stats are totally invalid because the significant
variables are not being controlled for and there is no consistency in the
criteria used to test or diagnose mets.  Mets usually aren't diagnosed until
they are quite proliferative.
I used to wonder why tumor markers weren't used to test for cancer.  They would
have shown that I had cancer going on.   The markers were above normal at time
of dx, and they returned to normal after treatment.  I recently learned that
they are rarely elevated in early stage cancers (which further reinforces my
feelings that with all that I had going on that my cancer was much more
advanced).
One reason for not wanting to deal with patients who are at beginning stages of
metastases is that there is no standard treatment protocol, nor is there much
research to back up what may or may not work during this phase.  As I have
written before, in my research I learned that the standard "4 AC" protocol was
adopted  on the basis of compromise and convenience.  At least one of the
researchers did not approve.
There isn't alot of research on alternative forms of treatment or even
prolonged treatment.  However, there is still inconsistency.  I recently met a
gal with stage IIIb b.c. dx.  She was having a hard time getting her insurance
to cover the recommended treatment--Taxotere, Carboplatin, and Herceptin since
it was still in clinical trials.  She then switched to a PPO and was told that
she will get Herceptin for the rest of her life.  I happened to see one of the
developers of Herceptin to see if I could get it extended.  He was very short
with us--and just said "one year" and wouldn't even discuss.  This gal that I
met will be seeing that same oncologist and he is allowing her to continue
Herceptin beyond a year.
Thus, even going for a second opinion may not give you the same results with
the same dr.'s.  They are basing their suggestions on the coverage allowed in
your existing insurance policy.  It has taken me alot of frustration and
searching to realize that.
If one goes to some of the support boards, there are several posting who were
at early stages at time of dx who developed recurrences after standard
treatments.  Now there might be ascertainment bias there--those who recur are
the ones posting; those who don't have recurrences aren't involved in support
groups.  However, something still seems very wrong.
Progress is being made in terms of treatment of b.c. in terms of lengthening
overall survival or prolonging  remission.  At the same time dr's are not
always truthful in their explanations of what cancer is all about.
Now, back to bone pain and arthritic activity.  I encountered someone on line
who has spinal mets whose symptoms and scan findings are quite similar  to
mine.  Interestingly, I did find an oncology nursing text which states that
sciatic pain may be due to bone mets.
In regard to alot of the symptoms I have, none of my peers are experiencing
anything of the sort.  Those who do have some arthritic activity, have very
different symptoms.  In addition, I am on high dosage of an NSAID (celebrex)
which should help with that.  It does help with the stiffness in my knees.  I
do suppose that the Arimidex could accelerate other degenerative changes.  Yet,
those with bone mets report very similar discomfort as I have described.
I am not certain of the criteria for dx'ing bone mets but do suppose that it
follows a certain pattern.  From what I gather different dr's and cancer care
centers use differing criteria.  Some appear not to dx until it is extensive.
Susan Love writes in her book, Dr. Susan Love's Breast Book, 2000, Perseus
Publishing, p. 562,  "Metastasis to the bone is usually diagnosed when the
patient experiences pain.  Sometimes it's hard to know if te pain is ordinary
back pain or some diesease, like arthritis.  Usually the pain you get with
breast cancer in the bones is fairly constant and generally doesn't improve
over time.  With arthritis, you wake up in the morning and feel stiff, but get
better as you move around during the day.  With some muscular problems that
cause bone pain, the more you do the worse the pain gets. But the pain from
cancer is steady, and usually remains even at night, when you're not doing
anything.  The pain is caused by the cancer taking up room in the bone and
pressing on it, and so sometimes it can get worse in different positions: if
you're standing up on the bone you might be compressing it more and causing
more pain than if you're lying down.  If you have pain that lasts more than a
week or two and doesn't seem to be going away, and isn't like whatever pains
have been familiar to you in your life, you should get it checked out."  
Catherine - 08 Oct 2003 19:11 GMT
My daughter is doing fine and most of the time so am I. :)

I guess the issues that I deal with post bc are that I still suffer from
some kind of ptsd.  Just like some people in new york still duck when they
hear an airplane, my first thought with every new pain or symptom is that it
could be mets.  It doesn't help when Dr's don't seem to listen and just
chalk everything up to old age.  I thought life began at 40!  I didn't know
it meant mentally, because physically one's body falls apart.  <g>  I may
just have bone spurs or arthritis or something minor going on.  Hope your
shoulder pains are minor too!

Catherine
Kaye301 - 09 Oct 2003 02:19 GMT
Catherine wrote
<< My daughter is doing fine and most of the time so am I. :)>>

That's great to hear!

<< issues that I deal with post bc are that I still suffer from
some kind of ptsd.  Just like some people in new york still duck when they
hear an airplane, my first thought with every new pain or symptom is that it
could be mets.  It doesn't help when Dr's don't seem to listen and just
chalk everything up to old age.  I thought life began at 40!  I didn't know
it meant mentally, because physically one's body falls apart.  <g>  I may
just have bone spurs or arthritis or something minor going on.  Hope your
shoulder pains are minor too!>>

I hear 'ya.   Then again, the things that happened to me post chemo were just
plain weird which doesn't make it easy NOT to think they're mets.  This
includes benign paroxysmal positional vertigo--a very weird type of dizziness
that literally knocked me over backwards--very strange.  How can one NOT think
that might have been possible brain mets.  My neurologist thought it might,
initially.  Then about a month after that there were the 3 attacks of acute
pancreatitis--out of nowhere which I had never had before.  Then about 5 weeks
after that I became hypothyroid, had a severe burning pain in my pelvic area
(similar to burning pain I felt in breast just before dx) and my blood levels
weht 'whacky' and tumor markers began to rise.  I guess once one has cancer
that mets are always a possibility that crosses one's mind--especially if
you've been told that you're at very high risk for 'recurrence.'
Kaye301 - 07 Oct 2003 00:18 GMT
Catherine wrote << I have shoulder pain in my right side and can't lift my arm
high anymore.

I have that in the shoulder in the non-lymphedema arm.  I have read that
several with b.c. have similar discomfort.  Some have dx' of shoulder mets.
Others don't.  Interestingly, the only people I have come across (other than my
sister who has a definate physical injury to her shoulder) with shoulder pain
such as described above are women with breast cancer.   That doesn't mean
others don't have it--but of family and peers, the only ones I know have b.c.
dx.
What concerned me re. possibility of shoulder mets was Tim's story of how bone
mets were discovered with his wife.  She first felt pain after an injury or
over use that didn't go away.  I first felt pain about a year ago which was
intermittent in my shoulder over the past year.  Since August, after light
gardening  it has been on-going.  X-rays reported only 'degenerative changes'
(no injury).
Of course I very much hope and pray that what is going on with me is NOT mets.
However, it is hard to disregard the stats...It is quite interesting to note
how stats are used re. b.c. and treatment(s).  Thought you might find the
following of possible interest...

http://www.nethealthbook.com/rheumatologicaldisease_shoulderpain.html
"Tumors in the shoulder: One of the causes of shoulder pain can be a tumor,
either benign or malignant, that is growing in the shoulder blade or the upper
end of the humerus. Benign cysts are not uncommon. Unfortunately, malignant
tumors can also be found and are not uncommon either. Osteosarcoma is one of
the common malignant tumors, but kidney cancer and breast cancer are common
cancers that tend to metastasize into the humerus bone and the shoulder blade.
About 18% of breast cancer patients develop humerus metastases (Ref. 5). More
details can be found under the above links regarding these malignancies.
Usually there is pain in a shoulder with metastasis or a primary bone tumor in
the humerus or scapula. X-rays, CT, MRI scans, or bone scans might suggest a
tumor. However, only tissue diagnosis such as a bone biopsy under CT guidance
with pathological analysis will confirm this diagnosis. An orthopedic surgeon
and likely an oncologist need to be consulted to help with all of this and the
appropriate treatments.
Disclaimer:
 This outline is only a teaching aid to patients and should stimulate you to
ask the right questions when seeing your doctor. However, the responsibility of
treatment stays in the hands of your doctor and you"
http://www.stat.washington.edu/TALARIA/LS2.3.1.html
"2.3.1 Bone Metastases"
"Multiple myeloma and cancers of the breast, prostate, and lung account for a
large majority of bone metastasis. The most common sites of bone metastasis
include the vertebrae, pelvis, femur, and skull. Distal extremity metastasis
are uncommon (Malawer and Delaney, 1989). The most frequent symptom is pain,
although 25 percent of patients with bone metastasis have no symptoms (Wagner,
1984). Pain may result from direct tumor involvement of bone with activation of
local nociceptors, or compression of adjacent nerves, vascular structures, and
soft tissue. Because patients often have multiple-sites of bone metastasis,
multiple areas of pain are-common. Pain is usually described as dull and
aching, is usually localized to the area of metastasis, and is increased by
movement. However, spine metastasis may impinge upon nerve roots and result in
radicular pain. Patients with metastasis to the base of the skull may complain
of headache; pain on head movement; and face, neck, or shoulder pain Greenberg,
D.html#, Vikram, et al., 1981). Besides pain and immobility, complications of
bone metastasis include fractures, hypercalcemia, and spinal cord compression.
Pathologic fractures occur most commonly in cancers of the breast, lung,
kidney, and thyroid and in multiple myeloma, usually in the proximal femur or
humerus (Oda and Schurman, 1983). Hypercalcemia is most often observed in
cancers of the breast, lung, and kidney and in multiple myeloma.
The diagnosis of bone metastasis is established by radiographic confirmation
and, rarely, biopsy. Radionuclide scintigraphy and magnetic resonance imaging
are the most sensitive means of detecting bone metastasis, often demonstrating
abnormalities before those seen on plain radiographs. Plain radiographs showing
typical lyric, plastic, or mixed lesions are usually diagnostic and easily
distinguished from lesions resulting from nonmetastatic causes (Wilner, 1982).
However, plain radiographs and bone scintigraphy may be negative early in the
course of myeloma and some osseous metastasis and at sites of previously
radiated bone (Kelly and Payne, 1991). Magnetic resonance imaging may be
helpful in such cases when bone involvement is suspected."
http://www.tri-x.com/Info/Histories.html
"Breast Cancer - 1
A. History
*    A 40-year-old female with breast cancer had a lumpectomy along with
chemo/radiation therapy one year ago. The patient began to experience pain in
the right shoulder two months ago.
B. Original Diagnosis
*    A bone scan was negative. A CT Scan was initially read as negative.
C. PET Diagnosis
*    A Whole Body PET Scan found numerous lymph node metastases in the upper
chest.
D. Change in Treatment
*    The treatment plan based on conventional diagnostic techniques would
have been watchful waiting. Thee PET Scan found a number of lymph node
metastases, and the patient was put back on chemo/radiation therapy. A re-read
of the CT after PET still could not accurately gauge extend of disease."
J - 07 Oct 2003 01:12 GMT
> Catherine wrote << I have shoulder pain in my right side and can't lift my arm
> high anymore. >>
[quoted text clipped - 6 lines]
> others don't have it--but of family and peers, the only ones I know have b.c.
> dx.

Hello Kaye,
There's lots of us out there who have it (who never had BC), some of us call it
"frozen shoulder"
<http://groups.google.com/groups?as_epq=frozen%20shoulder&safe=images&ie=ISO-8859
-1&as_scoring=d&lr=&hl=en
>

but frozen shoulder apparently eventually improves.
http://orthoinfo.aaos.org/fact/thr_report.cfm?Thread_ID=162&topcategory=Shoulder

http://www.nlm.nih.gov/medlineplus/shoulderinjuriesanddisorders.html
http://www.postgradmed.com/issues/1998/02_98/genovese.htm re: Steroid injections

Mine started with bursitis in the shoulder that I sleep more frequently on, then
tendonitis.
The x-ray (like you) showed degenerative changes. 3 years later (takes time for
more degenerative changes and injuries to show up) they did an ultrasound and found
3 things wrong
Osteoarthritis of the AC (Acromioclavicular) joint, subscapularis calcific
tendinosis and tendinosis of supraspinatus and fibromyalgia (muscle pain around the
joint).
In the meantime, since it was so painful to sleep on, I've been sleeping on the
other one and it too has develped the same problems. I don't care what they call
it, it's painful, so I'm hoping yours is just frozen shoulder.
I've had 3 steroid injections in one joint in each shoulder, spaced apart every 3
months, for safety (osteoporosis or other).
And one steroid injection in one muscle, two months ago.  No sustained relief and
they won't do surgery until the joint damage is severe.
So what do I do in the meantime?  Warm baths, stretches not beyond the point of
pain, some of the exercises mentioned above, and a roll-on called Biofreeze that
some athletic doctors or foot doctors have. It's cooling effect gives me 3 - 4
hours sleep with less pain.

Good luck, hope yours is just frozen shoulder.
J
Kaye301 - 07 Oct 2003 05:55 GMT
J wrote << Good luck, hope yours is just frozen shoulder.>>

I sure hope that it is nothing more than that.  It's in the arm opposite where
lymph nodes removed.  My shoulder began hurting in front part--over a year ago,
just once in awhile.  However, about 8 weeks ago, the pain progressed to my
upper arm and occasionally across the top of my shoulder up that side  of my
neck, occasionally in the arm pit (lymph nodes?) and once in awhile I also get
a weird, cold like sensation below the elbow (along with some numbness) and a
few of my fingers start tingling.  However, the only part that hurts daily is
my shoulder and upper arm  Sometimes it hurts after I move it; other times,
particularly at night it just starts aching while at rest.  Sometimes it
disrupts my sleep.  It (shoulder) hurts if I lay on that side or if I lay on
either my back or stomach.  However, I have noticed as of late that it hasn't
been hurting when I've awoken in the morning.  Range of motion varies--have no
probs with most movement  other than raising arm above shoulder level.
J - 07 Oct 2003 14:10 GMT
>   It's in the arm opposite where
> lymph nodes removed.

Yes, so it's the one that you're using more, right?

> My shoulder began hurting in front part--over a year ago,
> just once in awhile.

Me too, but 5 years ago.

>  However, about 8 weeks ago, the pain progressed to my
> upper arm and occasionally across the top of my shoulder up that side  of my
> neck,

yes

> occasionally in the arm pit (lymph nodes?)

yes, I actually thought it was my lymph nodes (and made a pain of myself by asking
my doctor to check), it's so sore all around that area and in the armpit.
There's an inflammatory portion to my condition, hence the try at steroids.

> and once in awhile I also get
> a weird, cold like sensation below the elbow (along with some numbness) and a
> few of my fingers start tingling.

Yes, well anything that happens at the shoulder level would of course affect
further down the arm.

> However, the only part that hurts daily is
> my shoulder and upper arm  Sometimes it hurts after I move it; other times,
> particularly at night it just starts aching while at rest.

yes, yes, and yes. In fact, the shoulder joint is connected to (what they call) the
shoulder girdle, which is connected somehow to the clavicle bones (neck area) and
the rib cage...to the spine.

> Sometimes it
> disrupts my sleep.  It (shoulder) hurts if I lay on that side or if I lay on
> either my back or stomach.  However, I have noticed as of late that it hasn't
> been hurting when I've awoken in the morning.  Range of motion varies--have no
> probs with most movement  other than raising arm above shoulder level.

I can raise them in certain directions but some not and it varies daily.
I actually asked them to chop off my arms, but that's ridiculous, of course.

I think you posted they checked blood flow?
Thyroid? Diabetes? Lung x-ray?
Have you been checked for sleep apnea? (just because I saw someone else say their
shoulder pains got better when treated for apnea)...low oxygen episodes during
sleeping.  It's an overnight study with wires hooked up to various parts of the
body, while the patient tries to sleep "normally" and a machines records apneic
events or twitching in the legs or arms. Everyone has some apnea, but if severe,
there's a machine that helps with that.

The other thing I meant to mention (if the steroid shot doesn't seem to resolve) is
I've tried Sulindac (NovoSundac)
http://www.rxlist.com/cgi/generic3/sulindac_ids.htm  an antiinflammatory for
osteoarthritis or Mobic/Mobicox
http://www.drugdigest.org/DD/DVH/Uses/0,3915,5003%7CMeloxicam,00.html  (easier on
the gastro than regular anti-inflmmatories).
More later.
J
Kaye301 - 08 Oct 2003 01:29 GMT
J wrote
<< Kaye301 wrote:

>   It's in the arm opposite where
> lymph nodes removed.

Yes, so it's the one that you're using more, right?

Not really.  Even though I am left-handed and the lymphedema is in my right arm
I have actually been using the right arm more.  I have always been
semi-ambidexterous--always did sports and physical activities (i.e. bowling,
carrying shoulder bag, hitting a baseball) with my right arm.  In fact the day
before the problem started I had been pulling weeds---mainly with my right
hand/arm.  I tried to use left but it was way too awkward.
<< I think you posted they checked blood flow?
Thyroid? Diabetes? Lung x-ray?
Have you been checked for sleep apnea? (just because I saw someone else say
their
shoulder pains got better when treated for apnea)...low oxygen episodes during
sleeping.  It's an overnight study with wires hooked up to various parts of the
body, while the patient tries to sleep "normally" and a machines records apneic
events or twitching in the legs or arms. Everyone has some apnea, but if
severe,
there's a machine that helps with that.
The other thing I meant to mention (if the steroid shot doesn't seem to
resolve) is
I've tried Sulindac (NovoSundac)
http://www.rxlist.com/cgi/generic3/sulindac_ids.htm  an antiinflammatory for
osteoarthritis or Mobic/Mobicox
http://www.drugdigest.org/DD/DVH/Uses/0,3915,5003%7CMeloxicam,00.html  (easier
on
the gastro than regular anti-inflmmatories).
More later.
J >>

I don't think I mentioned anything about checking blood flow.  I did have a
fasting blood sugar and don't have any probs related to that.  Last year I was
dx'd hypothyroid and am on daily thyroid med. for that, and if anything, I am
now almost hyperthyroid.  I feel quite good except for this arm thing.  It
starts aching while at rest--odd times.  Sometimes it hurts with arm movement
but not always.  If I move my arm a certain way, if it doesn't hurt then I get
this incredible feeling of fatigue in it and just today some numbness above the
elbow.
I can deal with pain.  I am most concerned that about the possibility of
bone/spinal mets and if that is going on would like to re-start Herceptin,
chemo, or increase bisphosphonate.
Tim Jackson - 07 Oct 2003 09:11 GMT
. Plain radiographs showing
> typical lyric, plastic, or mixed lesions are usually diagnostic and easily
> distinguished from lesions resulting from nonmetastatic causes (Wilner, 1982).

Interesting articles, but someone seems to have abused a spellchecker on
this bit.  It should read "lytic, blastic or mixed lesions", which are bone
eroding, bone depositing or bone moving tumours respectively.  The X-ray
shows holes, lumps or holes containing dense lumps, in the bone.

Tim Jackson
A. P. Thorsen - 07 Oct 2003 20:35 GMT
> Catherine wrote << I have shoulder pain in my right side and can't lift my arm
> high anymore.
[quoted text clipped - 5 lines]
> sister who has a definate physical injury to her shoulder) with shoulder pain
> such as described above are women with breast cancer.  

FWIW, one of my best friends has had problems since June with shoulder
pain that she described almost exactly like this.  Couldn't raise arm,
pain so severe she couldn't sleep, etc.  No clear physical injury, not a
breast cancer patient: her doctors did multiple MRIs and I believe
finally settled on a diagnosis of disc problems, maybe a small bone
spur. It now seems to be (all too slowly) resolving itself via greatly
reduced exertion/activity, prescription Motrin, etc.

Even for us BC survivors, common causes for common symptoms are very
possible.   Tripped myself up recently on just that point:  Y'all know
I've been whining about sleep interruption problems happening since
chemo.  I've just been diagnosed with sleep apnea.  D'oh!  Now I
*really* feel like "Bride of Frankenstein" at night:  Scars for breasts,
bite guard *and* the new CPAP mask!

Ann T.
Remove 'dontsendspam' from address to reply by email
Jackie - 07 Oct 2003 22:58 GMT
Ann, I have sleep apnea and have to wear one of those glamorous masks, too.
I'm single, so I don't scare anybody at night.  They *do* help so much with
the quality of sleep.  I still have a lot of trouble falling to sleep.  I
have removed caffeine from my diet.  I can't blame chemo as I'm through with
that.  I have had insomnia *way* before any other problems.

Good luck with your mask and CPAP machine.

Jackie S.

> > Catherine wrote << I have shoulder pain in my right side and can't lift my arm
> > high anymore.
[quoted text clipped - 23 lines]
> Ann T.
> Remove 'dontsendspam' from address to reply by email
Kaye301 - 08 Oct 2003 01:31 GMT
<<  I believe
finally settled on a diagnosis of disc problems, maybe a small bone
spur. It now seems to be (all too slowly) resolving itself via greatly
reduced exertion/activity, prescription Motrin, etc.

It would be great if that is all that it is.  I suppose being on the Arimidex
puts me at great risk for that
 
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