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Thread: "Caregiver's Guide" Contributions

  1. #1
    Administrator Top User emily430's Avatar
    Join Date
    Jun 2011

    "Caregiver's Guide" Contributions


    CancerForum's parent company, Internet Brands, also owns the website Urologists.org, and the content team there has asked if we could help them with a special project. They'd like to create "Caregiver's Guides" to help those supporting individuals diagnosed with Kidney & Bladder Cancers and Prostate Cancer (since those are the cancers related to urology). Since the members and moderators here on CancerForums are so well educated, it would be extremely helpful to the editors at Urologists.org to get some insight and tips, ideas, etc., from those with experience.

    If you feel like helping out, please comment on this thread with any insight, "I wish I'd known...," advice, etc.--anything you think would help the Urologist.org editor to create a good, comprehensive piece. In turn, the editor will include links back to cancerforums and credit us with having contributed to the article, which will hopefully help spread the word about cancerforums and what a wonderful place it is for support.

    Thank you!

    Emily430, Community Manager

  2. #2
    Administrator Top User Didee's Avatar
    Join Date
    Jun 2010
    Emily, I would also like to point you to the stickies here on the Prostate forum about what people wish they had known before the various treatments they had.
    Aussie, age 61
    1987 CIN 111. Cervix lasered, no further problems.

    Years of pain, bleeding, women's plumbing problems. TV ultrasound, tests, eventual hysterectomy 2007, fibroids in lining of Uterus.

    Dx Peripheral T Cell Lymphoma stage 2B bulky, aggressive Dec/09.
    6 chop14 and Neulasta.
    Clean PET April/10, 18 rads 36gy mop up. All done May 2010
    Iffy scan Nov. 2011. Scan Feb 2012 .still in remission.Still NED Nov 2012.
    Discharged Nov 2014.

    May/2012. U/sound, thyroid scan, FNB. Benign adenoma.

    Relapse Apr 2016. AITL. Some chemos then on to allo transplant. Onc says long remission was good. Still very fixable.

    SCT Aug 2016

  3. #3
    Administrator Top User emily430's Avatar
    Join Date
    Jun 2011
    Thanks, Didee! We'll definitely take a look at the Stickies, too.

  4. #4
    Experienced User
    Join Date
    Aug 2013
    Caregivers can play an important role as eyes and ears during visits with doctors. Taking notes and asking questions is a way to support your overwhelmed husband.
    Talk about sex and intimacy early and often. And keep that part of your relationship vibrant, whatever it takes.
    Work with your spouse to create a plan for how to talk anout his condition with friends and family. Consider creating a page on a third-party site like caringbridge.org to share medical details so you can prevent the disease from taking over your life.
    Don't wait to do the things you love--together and individually. Live your life. Live your life.
    Married 5 yrs, I'm 64 he's 69
    August 2013, initial Rx T1c
    DRE negative, CT & bone scans inconclusive
    PSA 147/103 (one wk apart)
    8/12 cores positive, 6 Gleason 7; 2 Gleason 6
    21% of total cores positive
    9/30 ultrasound revealed cancer in anterior of prostate
    October petScan/ MRI 1 cm lesion on sacrum DX stage 4
    curative approach tho slim chance it is curable
    12/15/13 Casodex started;50 mg daily
    1/15/14 PSA drops 39.7
    1/22/14 Lupron 22.5/3-month injection;5 mg daily Cialis
    4/14/14 PSA .1 Yay
    7/10, 10/2, 12/26/14 zero club. <.1 Viagra still working!
    1/22/15 bone scans--no change in mets on sacrum; said no thanks to radiation
    6/15/15 HT HOLIDAY. Yay.
    9/12/15 zero club, return of chest hair! And orgasms.
    12/15 uck. PSA 4
    1/16 PSA at 8.6. Back to Casodex/Lupron
    2/16 PSA .6 then <.1 by May
    12/16 starting 2nd HT Holiday!
    5/17 viagara-free sex and orgasms
    6/17 PSA 3.2. HOLIDAY over, back on Casodex

  5. #5
    Senior User
    Join Date
    Nov 2012
    For a little more information check with your local Hospice. They have a lot of good info and will offer help when you need it.
    Age: 65 / At surgery
    10/01/12 PSA 5.7 & climbing
    10/25/12 Transrectal biopsy / results T2 b/c Score of 3-4 & 4-3 / Gleason Score 7
    10/28/12 Consultation with Surgeon Dr. Vipul Patel (8,000+ surgeries) for Da-Vinci Radical Prostatectomy (my choice)
    01/11/13 Da-Vinci Prostatectomy, Florida Celebration Hosp. (above surgeon), Cancer confined within prostate capsule & none found in margins or lymph nodes.
    02/26/13 PSA test <.01
    06/11/13 PSA test <.01 and Testosterone 510
    09/09/13 PSA test <.01
    01/15/14 PSA test <.01
    07/21/14 PSA test <.01
    07/28/15 PSA test <.01
    02/02/16 Quadruple Bypass Heart Surgery
    06/28/16 PSA test <.01
    03/18/19 PSA tested yearly and to date still <.01


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