? possible recurrence in chest wall suggested?

Besides my non-lympedema upper arm and shoulder continuing to hurt badly at night--like a toothache in my arm at times, I have begun to have prob's with my lymphedema arm.
It was okay until I had my regular oncology visit. I was wearing lymphedema bandaging on the arm with no finger bandaging. That works for me. Anyway, he noticed some redness at the top and on my back and told me not to wrap if it were warm. He was quite concerned. That had been like that forever. However,
I didn't wrap for the next few days as he suggested which only made the lymphedema worse. He told my husband to call him if it got worse. He put me on an antibiotic. He called the following Monday and wanted me to come in again. It was a little better, but it had been coming and going like that if not for months for the past year or so.
I did use the pump, though, and after a few days went back to wrapping. The arm went back down to relatively normal size, although it still is noticeably bigger in some areas.
Anyway, around this same time we did 2 'unrelated things.' Because of the last bone scan report---for which the clinical hx had said that I had shoulder pain (which I did) and hip pain (which I hadn't complained about but did have lower spine discomfort)--came back with reporting mild uptake in the lower back but had no mention at all of the shoulder, we expressed our concerns to the oncologist in December--when I got the report and after I had seen in him as well as in a subsequent phone call. Each time he told me to get an outside reading. That was why we had the scans re-read initially. The radiologist who read them recommended a PET/CT scan based on the inconsistencies. She said it was hard to compare them, if not impossible, since the images wee from different perspectives and different settings had been used.
I gave that referral to the oncologist along with several research articles on the different presenation of lobular b.c. If he didn't approve the PET/CT scan we were going to do it on our own--again.
Well, he didn't approve it for the 2nd time. We didn't question him any further. I should also state that we did this last August as well--after a private dr. had suggested the PET/CT. I had seen a private internist at the urging of my sister. He took my films to a private oncologist and they felt that there was something going on and recommended the PET/CT. I brought that referral to my non-profit HMO onc and he said it wasn't indicated.
So, we dropped it. We did not take it any further. The same happened this time. I just wanted it on record that we had requested it. (We wound up doing it on our own but won't get into that now). I realized our onc's hands may be tied re. this. He is the one who allowed me Herceptin out--of-protocol (although I am not so sure it was out-of-protocol) which I think may be why I am still around now. When I saw him to check my shoulder, I also gave him a gift--the book, THE ANATOMY OF HOPE, by Dr. Jerome Groopman. He seemed positive about it and politely thanked me.
At the same time--and am not sure if this coincided with the gift or was before or after--he wrote a letter and put it into the computer file (not my regular file) stating that we had brought in a request for a PET/CT from this particular outside radiologist and why he was denying it based on the CT scans they had done. This letter was cc'd to several, but not all of the dr's I had seen.
When I received a call from the rheumatologist--the dr. that my internist who had sent me for my shoulder--who had been quite together re. all that was going on, her demeanor changed in the message she left on my answering machine. She commented that she had received a letter from my oncologist and that she would have to go along with him from now on. I had no clue as to what she was talking about until 4 weeks later when I got a copy of that letter.
He didn't write it the first time we requested the PET scan and provided him with info. re. lobular and why we were requesting it last August re my shoulder. He did it after the 2nd letter and phone call. Interestingly, the information I gave him were in an envelope marked confidential.
The information we gave him last August was a case study in which someone had severe shoulder/upper arm pain with normal bone and CT scans. A PET scan showed that the patient had mets to her upper chest wall. My pain was and is in my non-lymphedema arm. He did not write the letter at this time.
So, before I gave him the new info--research articles on how lobular b.c.
presents differently both as mets and in the breast, he had been very concerned about my lymphedema arm. By the way, the scan reports re. my shoulder state
"thickening" and the radiologist we saw who wrote the article on lobular pointed out a "thickening" in the pelvic region. (Lobular presents as thickening and not in the form of tumors).
In the few weeks since I saw him and started using the pump more and not wrapping, the skin on my upper arm with lymphedema has changed. Its appearance is a like small pitting and resembles that of the skin of an orange. Now I did have a component of inflammator b.c. at time of dx but I did not have the noticeable skin changes in my breast that go along with it since it had only been in the nipple. I never heard of it happening in the arm.
I called him about it and he told me to call my regular dr. I saw my regular dr. for an unrelated problem (although not necessarily unrelated to cancer--especially if I have a thickening in my pelvic area). I am experiencing a burning pelvic pain and discomfort in the lymph node area in the groin.
When I showed my regular dr. my arm, he told me that was typical for lymphedema. I don't think so. I called my onc last Tuesday or Wed and rec'd a call back on Wed or Thursday putting me in for an appt. for next Wednesday.
Anyway, I saw my ob-gyn on Thursday, and she was concerned about my arm and thought I should be seen before next Wednesday She told me she was going to call my onc.
So, the following day, on my way home from work I drove by our HMO. It's 20 miles from where we live. I thought I would call my ob-gyn to see if she had spoken with him yet, since I was in the area (and she was the one concerned with me waiting that long) and also my onc. I talked to my ob-gyn's nurse and left a message. I then called my onc to see if he would take a quick look. I left a message with both. I then first received a call back from my onc. He told me he didn't have time to see me--he was fully booked. He spent almost 5 minutes with me on the phone. I told him that the time that he spent with me on the phone could have been used to tell me if there was anything I needed to be concerned about. He said no--if there was he would have to write it up. He then went on to tell me I needed to call my surgeon. I asked why. He made some comment about having a recurrence in my chest wall and that a tissue sample would be needed. HUH???
I hadn't yet heard back from my ob-gyn, so I called to leave her another message to tell her what the onc. said, so if she hadn't called him maybe she wouldn't want to. The nurse who answer told me about him being fully booked until my appt. next Wed. I thought that was weird that she was telling me that since I hadn't told her any of that info (and I wasn't sure whom she was talking about at first). I left another message. The ob-gyn did call back but of course it happened during the couple of minutes when I was in the bathroom at home and the cell phone didn't ring--only a message was left. I tried to call right back but couldn't get through---end of day. Anyway, my ob-gyn left me a message saying that she was not able to reach him--he was on vacation and wouldn't be back until the following Wed. I was so disappointed that now, the ob-gyn, whom I have come to trust, was lying to me. I am not sure what is going on. I have tried to work together positively with the physicians I have been seeing. All I want to get is the 'right' treatment so, if at all possible, I can survive.

Here are some cancer treatment centers in California that are rated tops, from www.thecancer.info:

California a.. Cedars-Sinai Comprehensive Cancer Center, Los Angeles

b.. The Burnham Institute, formerly the La Jolla Cancer Research
Foundation, La Jolla

c.. Jonsson Comprehensive Cancer Center, Los Angeles

d.. Stanford University Hospital, Stanford

e.. University of California, Davis Medical Center, Sacramento

f.. University of California, Irvine College, Irvin

g.. UCLA Medical Center, Los Angeles

h.. University of California, San Francisco Medical Center

i.. University of Southern California Norris Comprehensive Cancer Center

I am so sorry you are having to go through all this, but I know there must be a specialist somewhere who can help you. The best of luck to you. I wish that I could be of more help.

This is a multi-part message in MIME format.

Pat, interestingly some who are er- still respond to Tamoxifen. I think the reason is that they are weakly er+ and/or that some of the cancer cells may be er+ I know some patients report that their oncologists still give them
Tamoxifen on the chance that it could possibly be somewhat helpful. I have no idea if it would or wouldn't in your case. My suggestion--if at all possible get a second opinion, if at all possible at a major cancer center. Take care and wishing you the best! {{{Hugs}}}

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Funny you should suggest that--I was talking with someone there last week. I was surprised, however, to learn that they only had one breast cancer specialist. I want someone who specializes in lobular. I will go anywhere in the world if I could figure out where. The specialist I saw who reviewed my CT scans only specialized in those and suggested I find someone else who specializes in MRI's

Kaye, it is still not too late to be seen in a Academic Medical Center by the the Breast Team, perhaps is would put your mind at ease.

hugs I can get...Pat

Keep us posted and let us know what is going on. Take care and lots more {{{hugs}}} and prayers, too!

your research does support you. A biopsy would be definative test - better then any scans and in the long run cheaper. Have you asked for one ? >>

Thanks for the feedback and not discrediting my efforts. Of course I wish my conclusions were otherwise, but common sense suggests that my naive analysis is 'right on.' I do hope I am all wrong. As far as a biopsy, I have asked and was told that it wasn't "indicated." Then again, there is the potential risk that a biopsy in and of itself could result in tumor seeding if there was a malignancy, and it would pose even further risk, if malignant and not further treated.

breast cancer, the treatment is the same for both, granted the presentation can be a bit different but not enough to have a subspecialty. >>

Yes and no or should that be no and yes? Those dr's who deal with it should be aware of these differences, and from my experience (and feedback from radiologist who authored one of the articles in this area), either they are not aware of it or they are not being given that critical information.
My symptoms, some of which I will list at the end of the following, and reported scan findings are consistent and/or suggestive of presumable metastases--which includes osteoblastic bone mets as well as soft tissue mets.

Although lobular metastasizes to common metastatic sites of ductal, it frequently metastasized to unusual sites as well which include the gastrointestinal tract, peritoneum, and adnexa. Gastrointestinal involvement was as frequent as liver involvement, appearing as bowel thickening on CCT.
Hydronephrosis was a compliction of metastatic lobular. Lobular accounts for
10 to 14% of b.c's, its incidence is greater than that of invasive cervical carcinoma and about about two thirds that of ovarian cancer. Thus, the radiologist has an integral role in examining patients with lobular both in detection of primary lesion as well as identification of metastatic disease as well as evaluation of treatment response. The above is from Metastatic Lobular
CARcina of the Breast -- Patterns of Spread in the Chest, Abdomen, and Pelvis on CT by Corinne B. Winston et al. (AJR 2000; 175:795-800). "Less common forms of recurrent breast cancer are often not recognzed and,therefore, are rarely considered in the differential dianosis." From "Metastatic Breast Cancer
Mimicking Stomach Cancre" by Alan G. Wile, M.D. et al (Surgical Rounds* October
1996).
"Invasive lobular arcinoma accounts for 5-15% of all breast cancer. It differs from invasive ductall carcinoma, the most common histologic subtype of breast cancer, not only by istologic and mammographic characteristics, but also by a different pattern of metastatic spread." "It has a propensity to spread to metastasize to atypical sites such as the peritoneum and retroperitoneum and urogenital tracts...Radiologists should be aware of the particular pattern of disseminationof invasive lobular carcinoma of the breast." The article describes a case history of a 50yrear-old woman with had edema of her lowr left extemity. Ultrasounds were normal. CT scan examination of thorax, abdomen and pelvis were negative for distant metastases. However, an unenhanced and enhanced helical CT and MRI examinationsona 1.5-T scanner with gdoterate dimegalumine were done. They showed diffuse infliltration and thickening of the fasicae surrounding the muscles of the femoral triangle and encaseing femoral sheath."(Unusual Soft-Tissue Metastasis of an Invasive Lobular
Carcinoma Mimicking Fascitis)" (M.El Khoura et al). "Bone metastases are frequently encountered in patients with breast carcinoma, particularly common in patients with recurrent disease...On occasion, patients with proven breast metastases to bone will have equivocal or negative findings on bone scanning...A handful of cases of normal bone scans in patients with osteoblastic metastases from breast and other primaries have been reported
Lobular carcinoma of the breast in particular has been mentioned as giving normal bone scans and producing radiologic features that mimik osteopoikilosis....Bone is one of the most common sites of metastatic disesase in patients with breast carcinoma...Of interest are a few reports of patients with lobular breast carcinoma who presented with blastic metastases and lack of abnormal activity on nuclear medicine bone scans. This clinical picture is reported to be associated with high estrogen receptor levels in the primary breast tumor." (Osteoblastic metastases from breast carcinoma with false-negative bone scans." Peter L Mnk et al. Skeletal Radiol (1997) 26:
434-437..."Pne 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 huermous...Abpout 18% of breast cancer patients develop humerus metastases...Usually there is pain in a shoulder with metastasis or a primary tumor in the humerous 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." (http//www.nethealthboook.com/ rhematologicaldisease_shoulderpain.html)
My symptoms--or at least some and these are not all include shoulder/upper arm pain daily since 8/03. First x-ray showed a bone-spur (osteoblastic lesion?
per above article(s). An osteoblastic bone metastasis may appear as a bone spur. The pain I am experiencing is often quite severe and reminds me of the horrific pain I experienced during taxol--like a toothache in the bone. Then there was the sciatic pain--although that did show up as a cyst or mass--initially a cyst was presumed because boundaries were smooth; however, most recent MRI indicated that boundaries were no longer smooth although it had decreased in size since I doubled Celebrex and began a statin drug. Then there is the unilateral leg swelling which began about 2.5 mos. after I stopped
Herceptin. Then there were the 3 unexplained attacks of pancreatitis. Then there are the enlarged nodes in the retroperiton and the aortocaval node.
There is also the hilar node which wasn't reported until 'stable.' Then there is the liver lesion but won't go into that one.
Based on the symptoms I am experiencing, scan reports which include thickening (i.e. in shoulder) and most recent 2nd scan re-eval of thickening in pelvic area (not reported) my diagnosis (3 types of aggressive b.c. with 9 pos. lymph nodes, extensive lymphovascular invasion, ER+, and Her2+) I strongly believe that there has been more going on from the start which has not been identified.
I believe the above articles support, if not confirm my suspicions, and unfortunately my concerns that my b.c. was not treated treated as aggressive or as long with the 'hard' stuff from the start. However, that is my personal analysis based on research and the particulars of my situation. I most likely did receive the current standard, if not more. However, the standard does not coincide with current research nor the parameters of my situation. The info.
I have posted is only some of my concerns. There is so much more going on bu don't have the time or energy to get into that at this time.

there must be a specialist somewhere who can help you. The best of luck to you >>

Tnanks, Joan. I would think that any oncologist SHOULD be enough of a specialist that they would have the information BEFORE the patient and know what's going on. Sadly, that isn't the case. It doesn't matter that lobular b.c. presents differently in so many ways. It's a completely different type and size 'shoe' than what is normal. I guess it's like trying to put a pair of baby-sized sandals on an adult who need snow boots. After all they're both shoes--what does it matter whether or not it fits or is the right kind?

I firmly believe the patient is true expert on their own case. And your research does support you. A biopsy would be definative test - better then any scans and in the long run cheaper. Have you asked for one ? ALex

This is a multi-part message in MIME format.

Lobular breast cancer is not that different than regular ductal breast cancer, the treatment is the same for both, granted the presentation can be a bit different but not enough to have a subspecialty. I think a better analogy would be trying to fit a foot with a fat sock in sleek sandal, it fits but it is tight. I think you could get many of your concerns addressed at an Academic Based Breast Cancer Center...and I mean a complete evaluation by the team not a appointment with one specialist.
I had my initial treatment at the Dana Farber..the team includes the surgeon, the oncologist, nurse practioner, radiologist and social worker.
If you need any other evaluations such as endocrinologist or GYN , you see a person connected to the team. In a large Academic Center in Boston, there are no "lobular" specialist but oncologists who's practice in primarily breast cancer. I believe if there was need they would have it. For example I was referred to an endocrinologist to evaluate my bones due to chemo ( this endocrinologist only sees people with bone related issues) but there is no doc for "ductal" breast cancer even though it is the most common type. I hope you find some piece of mind with this issue. Alex

I'm sorry you're going through all this crap... You sound so scared, and I certainly don't blame you. It sounds like you're getting what I call the "HMO run-around" -- "THEY" dictate FAR too much of what a physician can or cannot do, or recommend, IMO. However, with so many opinions, I suspect reality is getting muddied as well.

Since you're not getting answers, here's what I'd suggest:

I know you're in California, but not which part of the state, although I believe you're adjacent to LA. Suggest you take ALL of your records to City of
Hope in Duarte. Ask for a "complete consult... " Present your story and ask them figure things out for you, then follow their suggestions. -- (Maybe you could do this over spring break? .)

Meanwhile, am sending gentle hugs and prayers for Right Action. Hang in there, ok?

Joan, thanks so much for posting. I am aware of the cancer centers in So. Cal.
My greatest regret is that I didn't have a consult with the City of Hope immediately. I did have an appt.there but they cancelled it until after my treatment would have started. I have since found out that they are still doing stem cell transplants up to a year after chemo has been finished for stage II and III b.c. in clinical trials. I am more than 2 years out from hard chemo.
Darn! But I may still check them out anyway.

I think that was why I had Tamox in the first place from my first
Onc..Thanks for the support. I will take all the hugs I can get...Pat

until it gets bad then treat the end..I'm afraid I don't believe this..I feel I should hit it hard asap.. >>

Pat, I so very much agree with you and am afraid that's the belief of our HMO.
It may be a long shot but some stage IV's can be brought into long-term remission. We should have that right. We need to demand that this backwards treatment protocol be changed. Treatment can and does make a difference! Have you been tested for Her2+? If you are positive, have you had Herceptin? If not there are some vaccine trials with and without Herceptin at the University of Washington for which you may be eligible. I am guessing that although not close that you are not that far from the City of Hope or even Loma Linda Univ which may also have some clinical trials for which you may be eligible.
The sores in your scalp may be cutaneous mets. There is a cream which can help with those, but it is from Germany. It has not yet been approved for use in the U.S. (and I am not sure why other than we were not the ones to make it so it may not be cost effective), but you can get it through 'compassionate use.'
If your oncologist isn't aware of it, I would recommend a second opinion a.s.a.p. Take care and wishing you all the best! {{{Hugs}}} http://breastcancer.about.com/library/weekly/ aa111601a.htm
"Miltex Shows Results"
"by Margaret Chiffriller
What is Miltex  Join the Discussion
"Just keep up the faith and hope because you never know what's just around the corner. It seems they are coming up with new things almost on a daily basis. I have a friend who had breast cancer and it had spread to her spine and hip.
She's been on chemo for over a year and a half and looks great. She's feeling good and the tumors have not grown. That's a good sign. "
PATTIAKER   Related Resources • MILTEX • Inflammatory Breast Cancer • IBC Pictures • IBC Brochure  From Other Guides • Inflammatory Breast Cancer • Health Quizzes • Cancer Questions and    Answers Elsewhere on the Web • Inflammatory Breast Cancer Support • Inflammatory Breast Cancer Research Foundation
For anyone with Inflammatory Breast Cancer or skin metastases, Miltex (6%
Miltefosine Solution) is a new drug that you should be aware of.
Manufactured by Asta Medica, in Frankfurt, Germany, the drug is not approved in the United States or Canada. It is a topical cytostatic - which translates to a medication that is applied directly to the skin and causes cancer cells to stop growing.
The most recent published research was reported in the Journal of Clinical
Oncology. This study looked at 52 patients with inoperable skin lesions from breast cancer. The lesions were not responding to chemo or radiation. Patients received either Miltex or a placebo.

* 33.3% of the lesions responded to Miltex treatments
* 3.7% showed improvement with the placebo
* The time to treatment failure was three times as long in the Miltex group.

Although Miltex is not available by prescription outside of Europe, the company has established a "Compassionate Use" program. Your physician may obtain it for you if you need it. This is due largely to the efforts of Lee Smith. Lee lives in Canada and has Inflammatory Breast Cancer. Her efforts to make this drug for available herself and others with IBC have been remarkable... and successful.
More information on the compasionate use program and the forms necessary to apply for it are posted on the Miltex drug information page.
SOURCE: J Clin Oncol. 2001 Nov 1;19(21):4150-9
J Clin Oncol. 2001 Nov 1;19(21):4150-9.
Randomized, double-blind, placebo-controlled, multicenter trial of 6% miltefosine solution, a topical chemotherapy in cutaneous metastases from breast cancer.
Anticancer Drugs 2000 Nov;11(10):825-8
Phase II study of miltefosine 6% solution as topical treatment of skin metastases in breast cancer patients.
Br J Cancer. 1999 Mar;79(7-8):1158-61.
Phase II trial of topically applied miltefosine solution in patients with skin-metastasized breast cancer.
Cancer Chemother Pharmacol. 1999;44 Suppl29-30.
Miltefosine as a topical treatment for cutaneous metastases in breast carcinoma.
Prescrire Int. 1998 Feb;7(33):5-6.
Miltefosine: new preparation. Solution for cutaneous application.
For more details on the study you can contact: R. Leonard, MD, S.W. Wales
Cancer Institute, Department of Clinical Oncology, Singleton Hospital, Swansea