On March 10th 2011 I was officially diagnosed with Nodular Sclerosing Hodgkin’s Lymphoma. I have created this blog to keep those interested up to date on what is happening with my treatment and to hopefully provide some insight for others diagnosed with HL on what to expect during treatment.
In early Jan 2011 I visited my GP about a small lump in my neck. At the time I had no other symptoms. After examination of the lump he ordered blood work, which revealed I was slightly anemic.
Blood Results:
Flag | Results | Reference Range | Units | |
Hematology | ||||
WBC | H | 11.5 | 4.0 - 11.0 | 10*9/L |
RBC | 4.69 | 4.30 - 5.90 | 10*12/L | |
Hemoglobin | L | 115 | 135 - 180 | g/L |
Hematocrit | L | 0.37 | 0.41 - 0.52 | L/L |
MCV | L | 78 | 80 - 100 | fL |
MCH | L | 24.5 | 27.0 - 34.0 | pg |
MCHC | L | 314 | 323 - 365 | g/L |
Platelet Count | 384 | 150 - 400 | 10*9/L | |
Differential | ||||
Neutrophils | H | 8.8 | 2.0 - 8.0 | 10*9/L |
Lymphocytes | 1.7 | 1.0 - 4.0 | 10*9/L | |
Monocytes | 0.7 | < 0.9 | 10*9/L | |
Eosinophils | 0.2 | < 0.8 | 10*9/L | |
Basophils | <0.1 | 10*9/L |
Upon receiving the blood results he performed a physical, ordered more blood work, a urine test, and a chest x-ray. Shortly after this appointment I started experiencing many typical HL symptoms. Several other lymph nodes in my neck became inflamed to the point that they were visible. They did not hurt but there was discomfort when I moved my neck. I also experienced discomfort in my chest, difficulty breathing at times, mild fatigue, night sweats, increased resting heart rate at times, and skin irritation.
Chest X-Ray Report
Widening of the right side of the mediastinum is noted consistent with right paratracheal and right azygos lymphadenopathy. Slightly enlarged bilateral hilar lymph nodes cannot be excluded. Subcarinal lymphadenopathy cannot be excluded either. A small amount of fluid is present in the right-sided fissures. Peribronchial thickening is present in the right lower lobe. Minimal patchy consolidation is also present in the right lower lobe. The heart and left lung are normal in appearance.ImpressionRight-sided mediastinal lymphadenopathy. Bilateral hilar and subcarinal lymphadenopathy cannot be excluded.Right lower lobe bronchopneumonia. Small right pleural effusion.The findings are consistent with Hodgkin's disease. Sarcoidosis cannot be excluded although the small right pleural effusion is unusual.Surgical consultation and CT scan of the chest is recommended.
As you see from the report, the chest x-ray was the first indication I had HL. I was referred to a Pulmonologist who performed a fiberoptic bronchoscopy with biopsy; I also had a CT scan. Pathology of the sample retrieved from my lung during the bronchoscopy showed no evidence of Lymphoma or Sarcoidosis.
CT Scan report:
CT Neck and chest enhanced
HistorySevere clavicular and mediastinal lymphadenopathy, sarcoidosis or Hodgkin’s disease.
ComparisonNo prior studies available for comparison
FindingsExtensive lymphadenopathy throughout the next measuring up to 2.1 cm in short axis diameter. Extensive lymphadenopathy in both supraclavicular regions. No other soft tissue abnormalities in the neck.
Extensive mediastinal lymphadenopathy. A large heterogeneous anterior mediastinal mass measuring 6.1 x 3.8 cm in axil diameter in most likely confluent lymphadenopathy. Lymphadenopathy also involves the hilar regions and subcarinal region. No axillary lymphadenopathy. No pericardial effusion. The cardiac chambers are normal in size and appearance.
At least six small non calcified pulmonary nodules are scattered in the right lung, most of which are either subpleural, or along the interlobar fissures. No definite pulmonary nodules in the left lung. The trachea and central bronchi are patent and normal in caliber.
Limited images of the upper abdomen are unremarkable. No suspicious destructive osseious lesions in the neck and chest. The overlying soft tissues are normal.
ImpressionExtensive lymphadenopathy in the neck, supraclavicular regions and throughout the mediastinum with a large confluent nodal mass in the anterior mediastinum. The differential diagnosis includes sarcoidosis or lymphoma, but the presence of scattered non calcified pulmonary nodules, most of which are subpleural or along the fissures favours diagnosis of sarcoidosis.
The Pulmonologist referred me to a surgeon to have a larger sample taken from my neck. The surgeon disagreed with the CT doctor's findings he felt sarcoidosis was very unlikely. To confirm diagnosis of HL an excisional biopsy of an infected lymph node must be performed, as a needle biopsy will not provide a sufficient sample. The surgeon took a 1.6cmx1cmx0.6cm sample from the right side supraclavicular lymph node. This was the first to become enlarged and is by far the largest node.
Scar the morning after biopsy
Scar about a week later:
In addition to the lymph node biopsy a bone marrow biopsy was performed to determine whether or not the cancer had spread to the bone marrow. Bone Marrow involvement would mean stage IV disease which has a much poorer prognosis than stage I-III, which are all quite similar.
The bone marrow biopsy came back clean. Results from the CT of my abdomen and groin are not in yet so we do not know if it is stage IIb or IIIb disease. Stage II indicates that more than one lymphatic region is affected (in my case three, both sides of the neck and my chest) on the same side of the diaphragm. The ‘b’ indicates I exhibit systemic symptoms. Stage III indicates lymph node involvement on each side of the diaphragm.
Diagnosis has taken about 10 weeks. In that time my right supraclavicular lymph node has grown from ~2cm long to ~7cm in length. During the past 3 weeks I’ve been having low-grade fevers almost daily (200mg of Ibuprofen has helped A LOT) and the fatigue has become much worse.
Prognosis for HL is very good, with recovery at over 80% for my stage and age. I will likely receive six months of ABVD chemotherapy, possibly followed by radiation therapy.
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