First of all, I don't really think I was the norm. I go through the list of symptoms and I don't know if I had many if any. Also called Hodgkin Disease, was named after Dr. Thomas Hodgkin, who recognized it in 1832. It is not to be confused with non-Hodgkin's which is not the same thing. The lymph system is made up of lymphoid tissue, lymph vessels, and a clear fluid called lymph. According to the American Cancer Society: Lymphatic tissue includes the lymph nodes and other organs that are part of the body’s immune and blood-forming systems. Lymph nodes are small, bean-shaped organs found in many places throughout the body. Other parts of the lymphatic system include the spleen, the bone marrow, and the thymus gland.
The lymph nodes make and store lymphocytes, which are special white blood cells that fight infection. There are 2 types of lymphocytes: B lymphocytes (or B cells) and T lymphocytes (or T cells). Most cases of Hodgkin disease start in B lymphocytes.
Most often it starts in the upper part of the body such as the chest and neck or under the arms. Hodgkin disease can spread through the lymphatic vessels in a stepwise fashion from lymph node to lymph node. Rarely, and late in the disease, it gets into the blood vessels and can then spread to almost any other place in the body.
The cancer cells in Hodgkin disease are unique. They are called Reed-Sternberg cells (or Hodgkin cells). They are an abnormal type of B lymphocyte that is much larger than normal lymphocytes.
The 2 main types are classical Hodgkin disease (which has several subtypes) and nodular lymphocyte predominance Hodgkin disease. The types differ in the way the cancer cells look under a microscope. The types are important because each grows and spreads in a different way. Often they are treated differently. Ask your doctor about the exact type of Hodgkin disease you (or your loved one) has. All types of Hodgkin disease are cancerous (malignant) because as they grow they may compress, invade, and destroy normal tissue and spread to other tissues. Hodgkin disease occurs in both children and adults.
Back to the symptoms. Typically you'll hear this:
Drenching Night Sweats
Frequent Fever that comes and goes
Itchy Palms and Feet
Lump under the skin
You may notice a lump in the neck, under the arm, or in the groin. Sometimes this may go away, only to come back. Although it doesn't hurt, it may finally not go away, and lead you to see a doctor.
I never had a night sweat. I only once had a fever of about 99.9 that was unexplained. It was not long before I was diagnosed. I don't remember having itchy palms and feet. From what I hear, this itchiness is extreme and hard to relieve. Some people feel like they are just crazy.
I had a lump or pressure in my throat. That wasn't really how it started. I remember oddly enough the very first ever time I felt a fullness in my chest. I was driving. I felt a sort of odd sensation in my chest followed by a full sort of feeling. I can't properly explain it. I remember it was odd but it was followed by pressure and it never went away. I remember thinking what if I have cancer, immediately followed by me thinking I was crazy and then letting it go. I saw a regular doc for a regular checkup when he found a thyroid nodule. I figured that was what caused my pressure and let it go at that. I had sonograms on my thyroid but every single day almost this pressure was feeling worse. I felt like someone was squeezing on my neck and it was very uncomfortable. I found out later that even my family thought it was in my head! I am not one to rush to the doctor. I don't get crazy about myself being sick. I do worry about my kids, but not me really. Anyway, I also developed wheezing. It was on the exhale and my breathing was getting a little more labored. It was way worse late at night and when I was lying down. I had tests on my thyroid, saw endocrinologists, Ear Nose and Throat specialists and my gynecologist even sent me in for tests. I let this go on for four years.
My husband had to move for his job. The move was very hard on me physically. I was a couple of weeks pregnant while moving and didn't know it. I was so tired, wheezing, coughing and having a very hard time breathing. I felt lazy and didn't know what was wrong with me. We officially moved out in April and by the end of that month I couldn't get out of bed. I had to see doctors to find out what was wrong and it was hard. I had the fine needle biopsy on my throat. I mentioned it before. I definitely have to save the details of that procedure for another day. I have had that done twice. The second time with no anesthesia. I had this camera shoved up my nose on a long tube and down my throat too. I had that done twice. They charge me about $200 just for that tube up my nose not counting the numbing spray, the doctor, and all the other things they did just to tell me I was ok.
Regardless, the endocrinologist did schedule the MRI and finally found the tumor. By the time we had those results back (which was only about a week) I could not lie flat at ALL for an MRI. So we couldn't do any more testing. The doctor said it would be pointless to do one after chemo began because it wouldn't be accurate and the treatment was the same. I want to know what stage I was but I don't think I'll ever know for sure. I know it was considered bulky and that automatically puts me at stage II. We just don't know how much it spread without the full body MRI. I suppose it doesn't matter since I am in remission. Still, I am going to discuss with my doc when I see him again just exactly what stage HE considered me. I don't know what to tell people who ask. Especially those who have had cancer as well.
So, I guess my point of this post is to inform. I want to help anyone else who is going through this cancer. I want to inform those who are looking for information and to know my experience. I do remember something I read a few times about drinking alcohol causing pain in the tumor area. I have had some wine and it never caused me pain. I may have felt more pressure though and I specifically remember after having a glass of wine, the next day I coughed up a little blood. I did that more than once though. I was pretty scared when that happened as I was still undiagnosed.
Hmmm I just found something new myself. I discovered this on the American Cancer Society site.
Overview: Hodgkin Disease
After the Tests: Staging
Staging is the process of finding out how far the cancer has spread. This is very important because the treatment and the outlook for recovery depend on the stage of the cancer.
Hodgkin disease most often starts in one set of lymph nodes and then spreads to a nearby set without skipping areas, at least until late in the disease. Growth into nearby organs can sometimes happen too. The current staging system is based on these facts.
If a biopsy has confirmed that Hodgkin disease is present, the next step is clinical staging. This includes taking a medical history, doing a physical exam, and then doing imaging studies.
Imaging Tests Used to Stage Hodgkin Disease
One or more of the following tests may be used to help determine the extent of the Hodgkin disease in the body.
Hodgkin disease often causes swelling of lymph nodes in the chest which can usually be seen on a plain chest x-ray.
Computed Tomography (CT)
This test gives your doctor a better look at lymph nodes in the chest, abdomen, and pelvis, as well as other organs. The CT scan is like an x-ray but instead of taking one picture like an x-ray, a CT scanner takes many pictures as it rotates around the patient. A computer combines these pictures into an image of a "slice" of the body.
Often after the first set of pictures is taken, you or your child will get an injection of a contrast dye, or you may also be asked to drink a liquid of contrast material. This helps better outline structures in the body. A second set of CT scan pictures is then taken. Some people are allergic to the dye and get hives or a flushed feeling or, rarely, have more serious reactions like trouble breathing and low blood pressure. Be sure to tell the doctor if you or your child has ever had a reaction to any contrast material used for x-rays.
CT scans take longer than regular x-rays. You need to lie still on a table while they are being done. You might feel a bit confined by the ring you have to lie in when the pictures are being taken.
Magnetic Resonance Imaging (MRI)
This test is rarely used in Hodgkin disease, but if your doctor is concerned about spread to the spinal cord or brain, MRI is very useful for looking at these areas. MRI scans use radio waves and strong magnets instead of x-rays. MRI scans take longer than CT scans -- often up to an hour. You may have to lie inside a narrow tube, which is confining and can upset people with a fear of enclosed spaces.
Positron Emission Tomography (PET)
PET scans involve injecting a form of sugar that contains a small amount of radioactivity into the blood. This sugar collects in the cancer cells. A special camera can then detect the radioactivity and show the areas of cancer in the body. PET scans can help tell if an enlarged lymph node contains Hodgkin disease or is benign. Recently, newer devices have been developed that combine the PET scan with a CT scan. PET/CT scans can help pinpoint the exact location of the lymphoma.
During this test, a small dose of radioactive gallium is injected into a vein. It goes to lymph tissue in the body. A few days later a special camera is used to find the gallium. This test can find tumors that might be Hodgkin disease in lymph nodes and other organs.
The gallium scan can be useful in finding lymphoma that the PET scan may miss. It can also tell the difference between infections and lymphomas.
Blood tests aren't used to stage Hodgkin disease, but they may be useful in getting a sense of how advanced the disease is and how well a person might withstand certain treatments. Hodgkin disease cells do not appear in the blood, but a complete blood count (CBC) can sometimes show signs of the disease. A shortage of red blood cells (anemia) can be a sign of more advanced Hodgkin disease. A high white blood cell count is another sign, although it can also be caused by infections. Blood tests of liver function might also point to Hodgkin disease in that organ.
Bone Marrow Biopsy and Aspiration
Tests of the bone marrow (a bone marrow biopsy) may be done to tell if Hodgkin disease is in the marrow. To do the test, a long thin needle is used to remove small bits of bone marrow. A piece of bone might also be removed with a thicker needle. The 2 samples are usually taken at the same time from the back of the hip bone. The area is numbed first. But even with the numbing, many people feel some pain. The whole process takes only a few minutes.
Ann Arbor Staging System
The staging system for Hodgkin disease is known as the Ann Arbor system. It has 4 stages, labeled with the Roman numerals I, II, III, and IV. The higher the number the more advanced the disease is. If Hodgkin disease affects an organ outside of the lymph system, but is next to a known area of lymph node involvement, the letter "E" is added to the stage. If it involves the spleen, the letter "S" is added.
This term is used to describe tumors in the chest that are at least 1/3 as wide as the chest or tumors in other areas that are at least 4 inches across. If bulky disease is present the letter "X" is added to the stage. Bulky disease may require more intensive treatment.
So....I know for a fact mine was considered bulky. I had a tumor between the size of a "baseball and a volleyball in my chest" according to my doctor and my charts said bulky. I saw it. I have a small chest, as I am a pretty small person. So, I guess that puts the letter X on my stage. I knew it was bad at the time. I just always hoped it hadn't spread. It kills me to not know for sure.
And here is what scares me folks:
The terms resistant or progressive disease are used when the disease does not go away or keeps on growing while you are first being treated. Recurrent or relapsed disease means that Hodgkin disease responded well to treatment at first and went away, but it has now come back. If Hodgkin disease returns, it may do so in the area of the body where it first started or in another part of the body. This may happen shortly after treatment or years later.
My doctor does NOT think it will return so I hold onto that faith. He knows what he is doing. If it does, I'd fight it same as before. The cure rate for Hodgkin's IS good though.
Stage 5-year relative survival rate
I 90% to 95%
II 90% to 95%
III 80% to 85%
IV About 60% to 70%
You really do not get good statistics like that on too many cancers. That gave me hope through it all too.
It does repeatedly say that the treatment is more intense and the statistics lower if the stage is bulky. That's kinda scary but oh well. I am in remission and I have faith that is where I'll stay. I hope I have clarified some things for some people and hopefully helped out some new people. I feel great and I breathe fine. My neck has never felt 100% like it did before. I have scar tissue and I do have four thyroid nodules in my throat that cause some pressure. I still feel 100% better than I did before with no wheezing or shortness of breath so I am very very thankful. I'll post more on this disease later because I really didn't cover much of it at all! I'll go over the treatments and all that in a later post.