Just back from bone scan...

Feeling kind of bittersweet or maybe just bitter and sad at the moment. I should be angry, too, but that emotion has been used up. Just had a bone scan.
It hurt to lie still that llong due to the sciatic pain on the left side.
Ouch. I did it though. Afterwards, my films were on the screen. I asked the tech if I could see them. No surprises--except how the 'tech' labeled them.
The areas which have shown up as increased intensity still did--in the L4/L5 region of my lumbar spine. That has shown up as such on the past 2 MRI's (taken in 4/3 and 7/03) and PET scans (taken in 8/02 and 9/03) but not the first MRI (which was taken 6 mos after dx). She also showed me the spots on my shoulders, more on the left than the right. (That's what the last PET scan showed but the rookie nuclear oncologist (fellow student) interpreted that as 'arthritic activity.' What was different this time was that the tech labelled them as "unusual" "hot spots." If that means mets, so be it, but I am sure as h*## pissed that I have been discredited and made to look like a fool when I've known all along. It doesn't take a genius to come up with an answer that coincides with common sense in light of my pathology and symptomatology. It really is a 'no brainer.' It shows the lengths that the medical community will go to in order to avoid 'calling a spade a spade' in order to maximize the insurance industry's estimation of cost-effectiveness. Now, I may be wrong--and sure hope so--but my gut level reaction is and has been all along that I am not and have been 'dissed again.'
If it is only arthritic activity as I have been told, why didn't and hasn't the arthritic activity that had shown up in my wrists, knees, and ankles show up, too? I have been asking THAT all along and have not received a satisfactory answer.
The tech didn't elaborate but went on to say that my dr. would be contacting me to explain.

J, I hear ya--anything is possible. I guess some of my concerns are based on the following:
As you know I first began experiencing pain in my left shoulder in October 2002 (on10-31-02 to be exact for no known trauma or other identifiable cause. I first reported it my oncology appt. in 11/02. Intermittent shoulder pain continued of mixed severity until 8-7-03 at which time I began to experience daily pain in both my shoulder and upper left arm (after light gardening in which opposite arm was used most) of great intensity at times. Although the pain has improved after intervention which has included cortsone injection, osteoporosis prevention bisphosphonate, and increaed dosage of Celebrex to maximum safe dosage (up to 800 mg/day), I/we are most concerned as to the cause. No single cause has yet to be determined. I have been bounced around between physicians and a physical therapist who are each working within their own specialty, without coordination of information or relevant data in regard to my high risk for metastases/recurrence in light of pathology of cancer dx in
3/01. If this is in any way cancer related we would expect timely diagnosis in order to allow optimal and most timely intervention to maximize both quality of life and life expectancy, irregardless of misused and outdated statistics.
1) 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"

2)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."

3) http://www.google.co.uk/search?q=cache:AwBxV8uFI3QJ:www.cfps.org.sg/progra mmes/fmmc/modules/module3/module3B/module3B1/ 2003_M3B1all.doc+shoulder+%22 breast+cancer%22+metastases+hand+cramp&hl=en& ie=UTF-8

"Between visits with your doctor, watch for signs of possible recurrence of breast cancer. None of the following symptoms is a clear indication that the cancer has recurred. It is important, though, to report any of these changes to your doctor as soon as possible. Do not wait until your next scheduled check-up. Possible signs that the cancer has come back are:  

* changes you feel in a breast or in your scar during your breast self-exam, especially thickenings, lumps, or inflammation
* long-lasting pain in the shoulder, breast, hip, lower back, or pelvis
* loss of appetite or unexplained weight loss or gain
* digestive trouble such as nausea, vomiting, diarrhoea, or heartburn that lasts for several days
* changes in your menstrual period
* long-lasting dizziness, blurred vision, severe and frequent headaches, or difficulty walking
* long-lasting coughing or hoarseness. "

I am still hoping for the best!

.'

Arthritis can occur in a single joint or effect many joints...I think the xray tech was saying the same thing "usuall" or "hot" spots would equal arthritic activity. How is the insurance company holding out ?
it sounds like you have gotten tons of xrays and meds already ...if this is mets it it going to be changing your treatment plan ?
Congrads on completing the walk....hoping for the best outcome on your bone scan....and I think the most definative way to know about bone mets is bone marrow aspiration...perhaps this could give you some piece of mind one way or the other. ALex

on bone scans, so it is still possible that's what it is. I've heard that arthritis generally shows up in the joints.>>

I do hope that is 'all that it is' but do wonder why the previously identified arthritic activity which has shown up on x-rays and was identified as such before anything appeared on my lower back, shoulder, and I think hip isn't even mentioned. Something is very 'wrong' with this picture, me thinks...

Well, my thoughts about that were stirred by my onc's comment last Spring when
I asked how one differentiated bone mets from arthritis--he did not answer my question. Rather, he stated it doesn't matter, statistically in terms of long term survival if one treats mets for 3 years or waits a year and treats for two. That is NOT what the latest research findings suggest re. bone or spinal mets. Early treatment CAN improve survival. And, if one uses bisphosphonates from the start, bone mets may even be prevented. Unfortunately, it takes a long time before research findings are translated into standard treatment protocol.

<> No argument there--just wondering about the interpretation re. the former

<>

I think I would be able to get a bisphosphonate (Zometa) monthly and wonder about getting back on Herceptin.

<<Congrads on completing the walk>>

Thanks, I am still on a high from that! Somewhere there should be pics online from that, but haven't yet looked or been notified where they would be. I did earn the distinction of having the biggest blister they'd ever seen. I was debating on whether or not to check what might be going on. It was the last day and last 'rest' station. There was a medical tent set up. I wasn't sure I wanted to bother and even try taking my sock(s) off. However, since I had a clean pair on me, finally decided to check. I had moleskin over the area and was quite surprised to see a mound underneath. At first I thought the moleskin had slipped and bunced up. That did not happen--there was a large oval blister--about 2-inches wide by 1-inch long on the inner part next to my heal.
They lanced it, put some antibiotic cream on it, and bandaged it. It hurt even more at first after they did that but do think it did feel better after awhile. Some gal took a picture of it and posted it on-line. I recall her saying something about doing that and had asked for my email address. She had told me hers but with my memory had not only forgotten her address but also that she had even taken a picture. We had a good laugh over that.

<<....hoping for the best outcome on your bone scan....and I think the most definative way to know about bone mets is bone marrow aspiration...perhaps this could give you some piece of mind one way or the other. >>

I had asked if they'd do that at the time of my hysterectomy last year--but the dr. wouldn't do it and none of the other dr's I spoke with were interested in doing it.