Medical Update - 3rd (but unofficial) opinion
I recently sent my medical records on to a third hospital for a tie-breaking opinion. I’ll get examined by this doctor soon, so you’ll all hear about that in a few days. But I wanted to post the INFORMAL PRELIMINARY opinion e-mailed to me. Since it’s speculative and unofficial, I have excluded the doctor’s name and identifying information.
I’ve reviewed the medical records and scans, and am certainly delighted to see evidence of a complete remission following ABVD therapy. Obviously, I cannot render official impressions and recommendations without seeing, speaking to and examining [you], and so my impressions here are informal and based on the following assumptions: It appears to me… that you have stage IIB nonbulky classical Hodgkin lymphoma and completed 6 cycles of ABVD chemotherapy at full dose, and have achieved a complete remission. I see that at least one dose of ABVD was delayed due to a neutrophil count of 700, but I am assuming there were not frequent dose delays (it is my practice to never hold ABVD regardless of how low the WBC is, which is quite safe and does not require the use of Neulasta). I am also assuming that a PET/CT scan performed after 2 cycles of ABVD showed resolution of FDG avidity, which is what is stated in a note by Dr.XX, but I do not have a mid-treatment scan to review, only the pre-tx scan from December and post-tx scan from June.
The most important thing to recognize from my perspective is that the prognosis here is excellent, regardless of whether additional therapy is provided or not. This is based on the fact that limited stage Hodgkin lymphoma is quite curable in general, but also because a negative PET scan after 2 cycles of treatment has been shown to be the most powerful predictor of a favorable outcome. Recent Italian data has demonstrated a 95% chance of cure if the PET scan is negative after 2 cycles, and this analysis included patients with more advanced stage disease than yours. The real question is how to best achieve both long term survival along with reducing treatment-related risks. This is a critical consideration where mediastinal radiation is concerned.
The standard therapy for limited Hodgkin lymphoma for many years has been chemotherapy followed by involved field radiotherapy. Radiotherapy in young people, however, has raised concerns due to the significant long term risk of second cancers including lung cancer, leukemia, sarcoma, throat cancers, thyroid cancers, breast cancers and more. By 15 years after completion or radiotherapy, the chance of dying from such a secondary cancer eclipses the chance of dying from Hodgkin lymphoma, and the overall chance of developing a secondary cancer after radiation for Hodgkin lymphoma is approximately 25% by 30 years after radiation (you’ll only be 55)! Further, mediastinal radiation induces a significant amount of premature heart disease including coronary artery disease and valvular heart disease, with a recent analysis showing that greater than 20% of patients treated with mediastinal radiation develop heart disease within 15 years, and I suspect this is an underestimation. There are other consequences too, including potential for lung fibrosis, decreased salivation and tooth decay, and thyroid dysfunction. Given these observations, 2 randomized trials have evaluated chemotherapy alone with ABVD versus combined chemotherapy and radiation. These trials have found an approximately 5-7% increased risk of relapse with the omission of radiation, but no difference in overall survival. The reason there is no difference in overall survival (death rate) is that many patients who relapse with Hodgkin lymphoma may be cured with second-line therapy. This data also implies that 93-95% of patients definitely do not require the radiation and are therefore needlessly exposed to toxicity. These studies also have not matured to the 15 year follow up stage where secondary malignancies and heart disease in the radiotherapy-containing arm would begin to affect the data. As such, both strategies appear safe and effective in the short term, while secondary complications due to the radiotherapy would almost certainly be reduced with the chemotherapy only approach once enough time passes to observe this.
Given this emerging data, it is my practice in young people to avoid radiotherapy, particularly to the mediastinum, if at all possible. This is only an acceptable approach for limited stage non-bulky disease, since bulky disease patients (disease measuring greater than 10cm or a third of the maximal diameter of the chest) have never been included in the aforementioned trials, and still should receive radiation. That does not appear to be the case with you… It appears to me that you have nonbulky limited stage disease that achieved a complete PET response after 2 cycles of ABVD, denoting exquisite chemotherapy sensitivity. You then received 4 additional cycles of chemotherapy with post-treatment scans demonstrating a complete remission of the disease. Based on the available data, I think that the inclusion of radiation now is unlikely to improve your chance of long-term overall survival, which is obviously excellent, but is likely to increase your risks of long-term toxicity including heart disease, lung disease, and secondary cancers. Given your young age, the focus now must be on both curing the Hodgkin lymphoma and protecting you from additional adverse problems down the road. Accordingly, my informal recommendation is to not undergo radiation therapy— I think it is likelier to harm than to help, and think you have an extremely high probability of being cured today with no further therapy. Instead, you should throw back a few beers with your friends and family and celebrate your remission and excellent chance of long term good health, and feel proud of yourself for what you’ve just come through.
