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Medical Forum / Diseases and Disorders / Cancer / February 2006Hmm.. apparantly I'm unique
My ocologist is described as one of the top consultants in the UK for Lymphoma. I went to see him today for a follow-up appointment, after having had a negative PET scan. He said that there was a quite large residual mass in my chest but, because the PET scan was negative, they weren't convinced that radiotherapy was the right course of action for me. He said that in twenty years of seeing lymphoma patients, he'd never seen a case like mine. Apparantly, although it's common for there to be a residual mass, Hodgkin's doesn't normally behave in the way it's behaving with me! I then saw a consultant radiologist who said that there was no "right answer." The residual mass looks like it's benign (because of the PET scan), but there's always a risk of the cancer coming back. However, he also said that the mass should continue to shrinkl over time. He then explained the potential side-eefects and risks of having radiotherapy. He then said that the decision was "up to me". I said I didn't want the radiotherapy and that I'd rather leave it. Both consultants were happy with this and said that they would monitor me closely. If anything looked wrong in the future they would immediately start treatment. The radiologist then said that he wanted to consult with other experts around the world to ask advice about what they would do in my case! I wonder if there's something they're not telling me, or whether I really am unusual? Jeremy. > My ocologist is described as one of the top consultants in the UK for > Lymphoma. I went to see him today for a follow-up appointment, after [quoted text clipped - 22 lines] > I wonder if there's something they're not telling me, or whether I > really am unusual? Hi Jeremy, I wouldn't think there's something they are hiding from you. Maybe you're unusual, maybe you're not. Steph might know, since he treats patients such as you. Remember what he said "Here in BC, we do advise RT after chemo for bulky mediastinal disease. It increases disease free survival " I'd rather have radiation therapy, then potentially have to have more chemo later. On the other hand, my friend had 3 NHL tumours in her brain. She had high dose chemo and stem cell. One disappeared to nothingness, ooe continued to shrink and one's rather stubborn. She decided against radiation therapy, but it's complicated. The treatment put her in remission for Lupus, from which she was going to die if she didn't do something, so she's content with the risk of the lymphoma restarting, since she's probably older than you are so her life expectancy (given both problems) was not good at all. She feels she gained 3 years in what was a bleak situation and might consider RT to the brain if the tumor started causing her problems, but that would depend what was happening with the Lupus, I suppose. I think another Canadian's son had RT to the abdomen? (not sure I'm remembering right) area and at last word, was doing well. NHL he has. Keep in touch and let us know how it's going, Jeremy. J > Steph might know, since he treats patients such as you. > Remember what he said "Here in BC, we do advise RT after chemo for bulky > mediastinal disease. It > increases disease free survival " Indeed. I had these very words ringing around in my head as I was speaking to the specialists. However, without wishing to diminish Steph's words or expertise in any way, the fact is that the consultants had all my details in front of them and were making comments based on my personal situation. The radiologist literally said, and I quote "We don't know what to do for the best". I got the strong impression from my onc that he didn't want me to have the RT, although he never said it in so many words. If they had said to me "We recommend RT for you" or even "We normally recommend RT after chemo" then I might have made a different decision, but they didn't. And, as I said, they both seemed happy with the decision and didn't try to persuade me otherwise. Plus, it's not as though we are just crossing our fingers and hoping for the best - the fact is that I'm going to be very closely monitored and we can react quickly if anything looks wrong. Still, it's one of the most difficult decisions I've had to make in my life and I confess that I'm not 100% sure it's the right one. Jeremy. >> Steph might know, since he treats patients such as you. >> Remember what he said "Here in BC, we do advise RT after chemo for bulky [quoted text clipped - 19 lines] > > Jeremy. If you're comfortable with it, and your onc is, it's the right one for you > Indeed. I had these very words ringing around in my head as I was > speaking to the specialists. However, without wishing to diminish [quoted text clipped - 12 lines] > difficult decisions I've had to make in my life and I confess that I'm > not 100% sure it's the right one. Okay, well it's unanimous. (just saw Steph's reply). If your doctors are comfortable with no radiation and you are, then I am :) Stay well and keep in touch, Jeremy. J |
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