Hi all - had RARP 7/21 which went well but was complicated at 3 months by an infected lymphocele. I had 2 large, undetected and unscreened for, lymphoceles which led to sepsis and hospitalization with drains and IV antibiotics. A full miserable month out of my life. They also severely impacted my regaining of bladder control. UCSF surgeon says ultrasound screening after surgery is not indicated. As a retired radiologist, I disagree! Ultrasound screening could have detected these lymphoceles much earlier and allowed intervention before they led to sepsis and hospitalization. I complained to UCSF Patient Relations about lack of screening and my doctor's limited 3rd party communication with me via his nurse on My Chart during this ordeal. I did get a response directly from my surgeon which partially 'mended fences'. Anyone else with similar experience with lymphoceles and infection or DVT? Were you screened for lymphoceles after surgery?
Also, after surgery, there has been a redistribution of my belly fat down over my pubis. At days' end, this is unsightly and looks like a hernia on the right (it isn't a hernia- just fat). Thinking about a plastic surgery consult. Any similar experiences?
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Thomkin
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About 14-18 nodes removed. Lymphedema was not a problem ( I had mild intermittent pretibial edema before from Norvasc and this did not change.) I was not upset that lymphoceles developed, but that I was not screened post op and allowed the option to have my 2 large ones drained before one got infected and caused hospitalization for sepsis. And knowing that they were markedly compressing my bladder and interfering with/preventing bladder control. While docs are looking for better ways to exclude nodal metastases than PLND, they haven't come up with a reliable alternative yet. My pre biopsy prostate MRI was essentially normal but couldn't exclude micromets.
There are actually several more reliable alternatives than PLND for detecting LN mets. PSMA PET scans can detect LN metastases down to about 5 mm. Combidex MRI (only at Radboud U in Nijmegen, The Netherlands) can get detection size down as low as 2 mm. But the best way is to use the Roach formula, as in this clinical trial:
Still not down to micro size at 2 mm. Also, if prostate and pelvis are irradiated, that modality and surgery are out for recurrence vs surgery initially.
I agree, it is best to use the formula to make the decision.
If you read the link, there was 95% non-recurrence (5yr bRFS) following whole pelvic RT treatment of those very high risk patients, and I'd wager that most of the few remaining recurrences were distant. If any were local, they certainly can be retreated with focal brachytherapy or SBRT. So the cure rate is close to perfect.
OTOH, the 5-yr progression-free probability after RP for similar high risk (GS9) men is only about 44%
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