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Posted: Sat Aug 19th, 2006 02:52 |
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My lymph nodes are growing. Is this normal? Should I be concerned about cancer?
Lymph nodes play a criticial role in removing bacteria, abnormal cells and other matter as part of the immune system reaction to invasion by pathogens.
Lymphadenopathy (enlarged lymph nodes) is usually a sign of infection and is very common in sarcoidosis. Lymphadenopathy can occur anywhere there are lymph nodes. Lymphadenopathy can often be detected by low-tech means: visually or by palpation. Lymph nodes deep in the groin or beneath the ribs in the chest can be monitored with imaging such as chest xray, CT or PET scan.
Enlarged lymph nodes in sarcoidosis patients are a sign of infection and an indication that the immune system is attempting to eliminate the bacteria.
Treating Th1 inflammation with the Marshall Protocol means that symptoms usually get worse before they get better, due to immunopathology. It is common for lymph nodes to increase in size, tenderness, and/or number as part of the immunopathology of recovery. This is evident when palpated or visible lymph nodes wax and wane with antibiotic administration. As the MP treats the underlying cause of sarcoidosis and lymphadenopathy, it may take many months for lymph nodes to return to normal size (reported to be 1cm or less).
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Posted: Tue Nov 7th, 2006 02:55 |
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Osteopathic manipulation can increase lymphatic flow
(filelink)
My suggestion is to find an osteopathic physician who is skilled in manual techniques to assist and support proper functioning of the lymphatic system. Osteopathic manipulation can increase lymphatic flow.You can consult the World Osteopathic Health Organization and see if they have a current directory to help you locate a physician in your area, if you are interested.
Massage can increase lymphatic flow. http://www.nature.com/jid/journal/v95/n6/abs/5612759a.html An osteopathic physician may offer this sort of therapeutic technique. You may be able to find a massage therapist who is trained in techniques to help the lymphatic system. You want to ensure you consult a professional who is familiar with therapeutic massage and working with chronic illness because there are precautions to be taken and perhaps contraindications.
These therapies can provide excellent support for patients on the MP who need adjunctive therapy, in my opinion. Once you find a professional who is has these skills, they might be able to direct a family member to training which will allow them to provide some supportive manual therapy at home.
Belinda
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Posted: Sun Nov 12th, 2006 01:59 |
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When the doctor suspects enlarged lymph nodes may be cancer
(filelink)
Most patients with lymphadenopathy had tests which ruled out lymphoma (cancer) before they were diagnosed with sarcoidosis so you may be concerned, once again, about the possibility of cancer.
Members and/or doctors who don't understand the pathogenesis of Th1 inflammation and the natural immunopathology that occurs during treatment, may become alarmed when lymph nodes increase in size or do not decrease. Doctors may want to reassure themselves or the patient by doing additional biopsies to, once again, rule out lympoma. However, this invasive procedure is rarely necessary. Since lymphoma develops very slowly, a 'watch and wait' tactic is more appropriate. Slowing down the bacterial killing or taking a break from the protocol can also be done if anyone needs immediate reassurance that inflammation is responsible for emergent or increase lymphadenopathy while on the MP.
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See:
CANCER and Th1 inflammation re Diagnosing a biopsy correctly
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No one can measure many granulomas you had a few months ago to compare with how many you might have now. It's only upon autopsy that pathologists can get a small idea of the granuloma load.
As we've explained, lymph nodes enlarge due to infection, inflammation or cancer. You already have biopsy-verified sarcoidosis, which is the gold standard for diagnosing sarcoidosis. Try to understand that most physicians do not believe sarcoidosis can cause the damage it makes in reality. Most patients look pretty good and the internal damage is not visible. And most doctors have not dealt with sarcoidosis patients who are very ill.
Because of that, good, well-meaning doctors look for other explanations for sarcoidosis symptoms such as your inflammed lymph nodes. Add to that the fact that you have been losing weight (which is consistent with our experiences with the MP) and how litigious our society is in medical malpractice cases concerning missed cancer diagnoses, and you can see why your doctor is motivated to rule out cancer.
You alone can determine how much you are willing to expend time and energy to be poked, prodded and scanned to rule out cancers or any other differential diagnosis your physicians may suspect. But that testing can be expensive, time consuming and lead to nowhere. And you are the only one who knows how much of this you need before you are reassured.
Part of being an active member of your medical team sometimes means reassuring the doctor. Sarcoidosis is a scary disease for physicians, which is part of why they tend to get several specialists involved and do lots of testing. And they tend to want to do that whether the patient is stable of getting worse.
Sometimes a simple nap or brief rest can ease the discomfort of immunopathology symptoms. Our Tool List to check when Herxing is a great review to determine steps to take to keep these symptoms manageable. If any of these work, it lends credibility to the concept that you are experiencing immunopathology.
I understand now that you were asking would granuloma be found if you had a lymph node biopsied? We aren't all-knowing, but chances are good, since you already have biopsy-verified sarcoidosis; see this report indexed on PubMed.
The NHLBI advises that only one biopsy is necessary for sarcoidosis. But like I said, doctors get nervous and as long as the patient is willing, they can go on doing additional biopsies as time goes on.
It sounds like your concern is: "What are the chances the lymphadenopathy is now cancer and not sarcoidosis?"
Physicians may continue to be concerned about cancer, even when they have a biopsy-verified diagnosis of sarcoidosis. The best things you can do - to prepare to discuss this with your doctors are:
- read how doctors diagnose the cause of lymphadenopathy so you can understand their perspective
- read through the radiologist's report on Bill's recent CT scan, and look up any words you aren't sure about so you know exactly what was described. Radiology has its own language, so a medical dictionary may be necessary.
- search PubMed to see if there are any similar reports of this in sarcoidosis (for example, Pancreatic sarcoidosis with regional lymph node involvement.)
- evaluate Bill's progress thus far on the MP and make a list that you can share (and maybe leave) with the doctors.
All these will help your dicussion be more productive. You have to understand that doctors have more education and experience with cancers than with sarcoidosis. Since YOU have more experience with sarcoidosis, you have a valuable role to play in educating them, even if that includes presenting them with information from PubMed or other sources. (See, doc, there seem to be reports of similar cases in sarcoidosis.)
Finally, sharing your own observations of progress and explaining the immunopathology to them again should ease concerns and allow you to opt for a "watchful waiting" approach if that is what you prefer instead of more testing or an invasive biopsy.
You can also search our website for other helpful information such as the information about PET scans in this thread on sarcoidosis.
Belinda Fenter
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Posted: Sun Nov 12th, 2006 02:02 |
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Members experiences
(filelink)
Bill
After an antibiotic break
I am also happy to tell you all that the surgeon could not find the node it shrunk from 3.8cm to to small to safely do a punch biopsy. The vacation did it's job beautifully. The oncologist does not even want me for a follow up.
Hey this thing works
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Carole
I was also concerned about the growth of my lymph nodes, as were my oncologist and pulmonologist, from December 2003-February 2004. They felt sure that I had lymphoma from the PET scan and the increased size and number found from numerous CT scans. The mediastinoscopy in February revealed the sarcoidosis. I had already begun Benicar; and after the surgery, I started the minocycline. The rest is history: The Marshall Protocol saved my life!
I had scans after surgery for three 3-month periods and then 6-month periods until last summer, which then became on a yearly basis. When I questioned several times about what "normal" would be, they said that it is usually anything 1 cm or less.
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SherryH
Lumps were one of the big reasons I went to my doc for assistance. No-one seemed to be able to figure out what they were. After I met with my current doc he told me about the MP.
My lumps I think may be a mixture of enlarged lymph glands, lipomas, fat deposits...maybe granulomatous fibrosis or scarring. (?) Don't really know without a biopsy. I guess I've come to an uneasy acceptance that it doesn't matter....MP will hopefully address them all. 
Well, during phase I and much of Modified Phase II, which I'm on now (approx 9 months total on MP) has seen an increase in lumps/lymph etc. Often these are very tender for a while, then eventually seem to become painless, though still enalrged or swollen. In the last month I have noticed that the chain of lumps/lymph on my right leg have truly begun to decrease. I didn't quite believe it at first as it was a very slow process. But they have absolutely become smaller....either getting softer and then fading away or getting smaller and becoming very hard, like the tip of a pin for sewing with those little knobs on top. Then, they seem to get absorbed. This has been SO reassuring to me. Even as I see that I may have more swellng/enlargement throughout MP, as I still am experiencing now in other parts of my body, I can feel reassured that there is a good chance they will eventually dissolve/be reabsorbed/melt away...whatever. Helps much with my anxiety about the whole thing, too. 
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