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Forum Name: Endocrine Cancers

Question: Supraclavicular Edema, but no enlarged node?


 Befallingdusk - Sat Jun 11, 2005 3:20 pm

Hi. I've been posting in the Lymphedema forum, tying to get to the bottom of a sudden onslaught of unusual symptoms. But setting these other symptoms aside, I want to ask about this obvious swelling above my left collarbone, tucked up against my neck. I only found out what it was called through my PCP.

Can "Supraclavicular Edema" indicate a problem somewhere even though CT scans show no enlarged nodes nor masses in abdomen or pelvis? I also have petechiae (blood spots) mostly over my stomach area and a few spots over my breasts and left arm. Does anyone have any idea what this could indicate? The edema fluctuates and is always more pronounced in the evenings, if that means anything. Any opinions or advice is appreciated.....
 Dr. Shank - Sat Sep 24, 2005 1:49 pm

Dear Befallingdusk:

You may be describing more than one problem, but I am very concerned about the "sudden onslaught of unusual symptoms" that you did not describe.

The first issue is the petechiae. There are a variety of possible causes, but they can be grouped into abnormalities of platelet number or function (such as from leukemia, enlargement of the spleen, or multiple myeloma) and abnormal leakiness of blood vessels (such as from a vasculitis or severe vitamin C deficiency=scurvy). I would start with a hematologist/oncologist. If the hematologist/oncologist does not find an explanation, I would try a rheumatologist.

The second issue is the swelling. I question the diagnosis that you have been given. There are connections in the head between the blood circulation on the right and left, but not between the lymphatic vessels. Without alternate routes for lymph fluids to drain, I would expect supraclavicular lymphedema to extend into the head and neck or into the shoulder and upper extremity--neither of which you seem to be describing. Since the lymph system is largely dependent upon gravity and muscle contraction to get the lymph fluid back to the chest (where it joins the blood circulation), I would also expect lymphadema of your head, neck, shoulder, or supraclavicular areas to get better during upright posture and muscle activity, not worse.

You specifically mentioned that you had no masses or enlarged lymph nodes in your abdomen or pelvis, but said nothing about your chest or neck, nor why anyone was looking for masses or enlarged lymph nodes in your abdomin and pelvis. Without more history, a chance to examine you, or more information about diagnostic tests that I have been performed, the possibilities are pretty broad. Given the petechiae and the "sudden onslaught of unusual symptoms," my first concern would be for a lymphoma. Other possibilities include a lung cancer (Pancost tumor), a thyroid nodule (benign or malignant), a thyroid cyst, a brancheal cleft cyst, a parathyroid nodule (benign or malignant), a parathyroid cyst, a fatty tumor, an aneurysm of either the common carotid or brachealcephalic artery, or venous obstruction in either the jugular or subclavian vein.

One word of caution: Like the rest of us, radiologists usually see what they are looking for, and they do not look for fat. I saw a woman who had very painful left sided supraclavicular and neck swelling that worsened as the day went on. After careful examination, I realized that she had a markedly distended and extremely tender left jugular vein just above a soft neck and supraclavicular mass. I suspecteded that the mass was partially obstructing her veins, her pain was caused by abnormal stretching of the veins that could not drain all the blood flowing into them, and that her symtoms improved overnight because the blood could easily backflow from the left to the right when she was lying down. I personally performed an ultrasound. It confirmed my exam, but showed that the mass extended into the upper chest and was largely constricting the junction of the jugular and subclavian veins. The mass had the ultrasonic characteristics of adipose (fat) tissue. I ordered an MRI of the neck and chest, told the radiologist about my findings, and received a report that there was no mass or obstruction whatsover. One glance at the actual films showed me a obvious, large, irregular, mass with the MRI characteristics of adipose tissue. Comparing the right and the left confirmed the partial obstruction and prominent dilation of the left jugular and subclavian veins. Although the reading radiologist is very good, he reflexively ignored anything with the density of fat and did not systematically trace the veins or compare the veins on the left with those on the right. Because of the radiologists' reading, the surgeon was reluctant to operate. When he finally did operate, however, he found exactly what I told him that he would (and the patient got dramatic relief!).

I have mentioned several endocrine possibilities for the supraclavicular and neck mass. Although I am more concerned about non endocrine possibilites in your case, I would add that endocrine diseases do often present with a variety of symptoms that may seem unrelated. Endocrinologists are the specialists in abnormal endocrine function and in endocrine tumors and cancers. If you need to find an endocrinologist near you, you can search the website of the American Association of Clinical Endocrinologists (http://www.aace.com).
 Befallingdusk - Tue Sep 27, 2005 12:04 am

Dear Dr. Shank,

Thank you so much for such an indepth, knowledgable reply! That meant the world to me and the time you spent is much appreciated! I originally posted in the Lymphoma section of the forums, back in March/April. There I listed the "sudden onslaught." It all began with excruciating breast pain in a localized area of the left breast. The pain was not constant, but the site reacted horribly to sudden movement, touch or palpitation. Then, in order of their occurrence (keeping in mind symptoms began overlaping): entire upper left quarter of body swelled (left breast, left arm and left supraclavicular area); nodes would swell and burn in left inner-arm, neck and elsewhere; burning, creeping sensation in skin along the swollen areas; intense itching; nodes would recede and stop burning, to rise and burn again at another time; multiple patches of broken capillaries arose on breast; "itchy pimples" appeared among the capillaries; then tiny pin-prick, bright red spots appeared on upper abdomen, left arm and upper chest (petechiae? Not tons of them but certainly 30 or so); bled spontaneously into inner-arm 3x (purpura? But then it went away); developed high blood pressure; left-sided chest pain that came and went; now I have pain in my left armpit as though a rock is wedged up there. I have two other weird rashes no one is able to identify, and just recently developed a third on my right leg of all places (just a patch of redness the size of a silver dollar/may be unrelated).

My PCP believes I have lymphadenapthy due to my nodes, but a CT scan of my neck and chest showed: "Essentially within normal limits," which surprised me greatly, because the nodes burn and hurt. The severe breast pain has disappeared, but the entire left side of the breast still burns pretty badly. Screening mammogram and ultrasound came back normal in the beginning, early April. A CT scan of lungs found a .5 mm nodule in upper right lobe, but docs think it's scar tissue. A 3 mo. follow-up scan showed no change. My left aureole now gets bright pink and hot. But it comes and goes, just like the edema. I mean, none of it goes away, it just wanes in severity throughout the day and night. I've read that nodes that swell and recede are called Lymphamatous, which would certainly describe mine, but I don't know what it means or indicates. I do believe I have some in the axilla now that are definitely swollen and hurts more often than not. I couldn't feel these back in March/April.

A recent MRI of my breasts showed a lump in right breast (a reoccurrence of a fibroadenoma, so the docs believe), a lump in the left breast they think is a fatty something AND two areas in each breast of increased blood flow, upper-outer quadrants. A follow up ultrasound was done which confirmed the MRI findings, except the the ultrasound noted 5 nodes that were "enlarged" but apparently benign in appearance. Breast docs are dismissing it all as a severe case of fibrocystitis but want everything rechecked in 3-6 months, yet offer no explanation for the supraclavicular and arm edema, or the rashes. This has been going on since March 28; and no one will do a begged-for biopsy or FNA of a node. Very frustrating for me.

I've been doing tons of research myself and I'm fearful I have Inflammatory breast cancer lurking around in there, as now, my right breast, arm and supraclavicular area is becoming involved also. BUT, I'm not ruling anything out at this point, because my symptoms are so unusual and varied. I do believe I'm exhibiting the vasculitis but it's milder now than in the beginning. PCPs have noted all of it -- the edema, high blood pressure, spontaneous bleeding and skin and breast changes -- and they keep referring me out to breast doctors who still don't believe it's coming from my breasts.

I had multiple CBC's in the beginning -- all normal but two. One showed slightly elevated Hemoglobin and Hematocrit, then normal results for awhile, then high white blood cells and neutrophils. Then, this too returned to normal but almost everything at this point was pushing high normal. I haven't had another CBC in months.

I too, am very concerned about my health. This certainly isn't anything that's going away and it does not come and go with my period. I don't even have periods! The only thing that has improved with significance is the breast pain. I still have pain, but it's of a different nature than from the beginning.

I'm going to NC in November where I have some oncologists waiting to see me. They are offering to do the biopsies, and a pet scan. In other words, they want to get to the bottom of it, umlike the doctors I'm now seeing. But I also think I should see a hematologist or an endochronologist. I just need help and I hope I don't drop dead while waiting for it.

OH! And yes, I tire very easily and am now having intense spells of dizziness (as though I'm drunk or seasick and I don't drink). After I sleep a good 8-10 hours, the edema recedes and is better in the mornings. As the day progresses, regular activity, by noon and early afternoon, I'm all swollen again. Exercise does seem to help but only if it's rigorous. Considering all of the above, if you have any further suggestions or insight for me, I would be ever grateful. I thank you again for your reply.

bdusk
 Dr. Shank - Sat Nov 19, 2005 5:42 pm

It seems clear that your breast has been a distraction from a number of systemic symptoms. I wish you the best and hope that you will share what you learn.

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