Recommend me a radiation oncologist in New York with an open mind
May 26, 2010 9:09 AM Subscribe
[medicalfilter] Looking for radiation therapy for early-stage Dupuytren's in New York - can you recommend someone?
I'm a 30 year old recently diagnosed with Dupuytren's in both hands. It's progressing somewhat rapidly (not surprising, given my age) but has not yet interfered with functionality. I am looking for radiation oncologists who can offer the radiation treatment for this in the New York area. I'd love to hear from patients who've had this treatment, but will take any oncology recs you have!
I have early-stage Dupuytren's disease. I am 30. Diagnosis at this age usually means a more severe and rapid progression. Dupuytren's is often not treated until functionality is lost, and then with surgery, needle aponeurotomy or collagenase - but most patients experience recurrence or exacerbation following these treatments. Anecdotally, patients who have had these treatments seem to feel you're damned if you do, damned if you don't. However, radiation therapy has been shown clinically to be effective in the early stages of the disease (before function loss), with an extremely low rate of recurrence following treatment. Anecdotally, patients who have had it, recommend it. Additionally, because it is nontraumatic or invasive, it would still permit for the other treatments to be done down the line if the condition did recur. I know there are risks associated with radiation therapy (3/1000 patients may experience therapy-induced malignancy 20 years following treatment), but to me, the calculation is worth it. I need to use my hands to work and, more importantly, to live (I also have juvenile diabetes, and need two fully functional hands to insert my insulin pump every other day) and I'd like to have as much use of them as I can. I expect to work at least 40 more years! And I do not want to have to start scheduling routine nursing care in the next few years, or to feel that I can no longer travel because I need it, when I am only 30 now.
I spoke with Dr. DeLaney at MGH, but they will not accept patients over 60. I don't think I have 30 years to wait - I expect, untreated, to have lost the use of four fingers by then. However, one clinic in OK (my spouse has been calling around the country for me) said that I should be able to obtain treatment from an oncologist locally as it's not a complex procedure, as long as I could convince them of the benefits and that I was willing to accept the risks.
So, I would love to hear about radiation providers - especially in my area - who would be willing to review the scientific data with an open mind and consider the procedure.
I have early-stage Dupuytren's disease. I am 30. Diagnosis at this age usually means a more severe and rapid progression. Dupuytren's is often not treated until functionality is lost, and then with surgery, needle aponeurotomy or collagenase - but most patients experience recurrence or exacerbation following these treatments. Anecdotally, patients who have had these treatments seem to feel you're damned if you do, damned if you don't. However, radiation therapy has been shown clinically to be effective in the early stages of the disease (before function loss), with an extremely low rate of recurrence following treatment. Anecdotally, patients who have had it, recommend it. Additionally, because it is nontraumatic or invasive, it would still permit for the other treatments to be done down the line if the condition did recur. I know there are risks associated with radiation therapy (3/1000 patients may experience therapy-induced malignancy 20 years following treatment), but to me, the calculation is worth it. I need to use my hands to work and, more importantly, to live (I also have juvenile diabetes, and need two fully functional hands to insert my insulin pump every other day) and I'd like to have as much use of them as I can. I expect to work at least 40 more years! And I do not want to have to start scheduling routine nursing care in the next few years, or to feel that I can no longer travel because I need it, when I am only 30 now.
I spoke with Dr. DeLaney at MGH, but they will not accept patients over 60. I don't think I have 30 years to wait - I expect, untreated, to have lost the use of four fingers by then. However, one clinic in OK (my spouse has been calling around the country for me) said that I should be able to obtain treatment from an oncologist locally as it's not a complex procedure, as long as I could convince them of the benefits and that I was willing to accept the risks.
So, I would love to hear about radiation providers - especially in my area - who would be willing to review the scientific data with an open mind and consider the procedure.
I found this list, which indicates that Boston might be a closer solution for you if you must travel. I can also recommend the general care at both Mass Gen and Beth Israel Deaconess, although I have not had radiology treatment there.
posted by catlet at 10:19 AM on May 26, 2010
posted by catlet at 10:19 AM on May 26, 2010
Whoops, I see that you've already got that list. Sorry about that!
posted by catlet at 10:23 AM on May 26, 2010
posted by catlet at 10:23 AM on May 26, 2010
Response by poster: No worries - MGH won't take patients UNDER 60 (I typo-d over 60, above), but I may try Beth Israel if I strike out in NYC. Thanks!
posted by mccn at 10:39 AM on May 26, 2010
posted by mccn at 10:39 AM on May 26, 2010
Response by poster: As a followup, I was referred to Nicholas Sanfilippo at NYU Oncology, who hasn't done this procedure before, but is willing to consider it and work with me - so anyone in NYC who is looking might look into him.
posted by mccn at 12:29 AM on June 19, 2010
posted by mccn at 12:29 AM on June 19, 2010
This thread is closed to new comments.
posted by mccn at 9:20 AM on May 26, 2010