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YANA - YOU ARE NOT ALONE NOW

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Tom F and Leanna live in Connecticut, USA. He was 56 when he was diagnosed in November, 2016. His initial PSA was 38.00 ng/ml, his Gleason Score was 8, and he was staged T4. His initial treatment choice was Other (Other) and his current treatment choice is None. Here is his story.

THERE WAS NO RESPONSE TO AN UPDATE REMINDER IN 2019 SO THERE IS NO UPDATE.

In September of 2016, went to Naturopath and had first PSA ever, drawn as part of routine check up - returned at 27 ng/ml. Neither naturopath nor I understood full ramifications of that number and I delayed in getting repeat draw. Following research and understanding possible seriousness, second draw 6 weeks later. PSA up to 38. All has moved pretty quickly since that time. Biopsy, 6 of 12 cores positive, Gleason 8. MRI and bone scan - probable involvement of left seminal vesicles; no apparent lymph node or bone. My partner researched and we had hoped to go to Snuffy Myers, but he was no longer accepting new patients. Referred us to Mary Ellen Taplin out of Dana Farber. Went to clinic where 3 provider types and options were offered including Clinical trial involving ADT followed by prostatectomy. Chose the clinical trial Just finishing 6 mos of Lupron and abiraderone. Preparing for surgery on July 6th. Able to work; hot flashes, fatigue; no libido. Pretty anxious still about prognosis. And physical changes I am facing. Not much attendance to the psychological aspects for patient and partner, but physical care very good at DF.

UPDATED

August 2018

Six months of hormone suppression followed by robotic prostatectomy, as part of clinical trial at Dana Farber in Boston. Fell into the leg of the trial that followed for 12 months (versus another 12 months of hormone suppression). Just completd 12 month post-surgery check and PSA remains undetectable.

Took about 4 months for urinary continence to return, but erectile function is still essentially absent. (One nerve was spared). Mentally still very difficult to accept the sexual changes, and while good in all other aspects, the hospital/cancer center has not paid much attention to the psychological aspects.

Obviously extremely grateful for the cancer control results so far! It has been a whirlwind time, and stressful to both my spouse and I. Each 'clean' visit brings a little exhale of relief.

Tom's e-mail address is: tlcrew AT cox.net (replace "AT" with "@")

NOTE: Tom has not updated his story for more than 15 months, so you may not receive any response from him.


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