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I Had Cancer Guidelines

We're all here for similar reasons - we've been touched by cancer in some way. It’s up to all of us to show each other that no one is alone. Your IHadCancer profile is your own place to call home during this crazy thing called cancer, we just ask that you keep these simple guidelines in mind when participating.

1. Always Be Nice. This is a place for connections and conversations – we encourage you all to talk openly but please remain considerate in all of your engagement. Don’t post obscene, hateful or objectionable content. Abuse and disrespect will not be tolerated in the IHC community and is subject to deletion and user removal at our discretion.

2. Be a Good Friend. The IHC community is a family. Please remember to be a good friend to the connections you make on IHC. Ask questions that you wish someone would ask you; if you can’t find the right words to say, send a hug, it can speak louder than words. A simple gesture goes a long way.

3. Don't Spam. This includes sending unsolicited messages of any nature, posting links to unrelated content, promoting a survey, fundraiser or product where it shouldn’t be promoted. If you aren’t sure if something is appropriate to post, e-mail us and we’ll let you know.

4. Think Before You Post. Everything you post on IHadCancer is secure, but it is up to you to monitor how much or how little information you are sharing about yourself and your experience. Please don’t share personal or identifiable information like your mailing address or your full name and don’t share other member’s information.

5. If You See Something, Say Something. We work hard to make sure these guidelines are followed closely but if you see something that doesn’t’ feel right to you, please let us know. We review every report we receive and will take anything you say to heart. We promise.

6. Be Open. Welcome newcomers and help guide them through this journey based on your own experience. Whether you are a survivor, fighter, caregiver or supporter, you have valuable information that can very well help someone else who is just beginning the cancer journey. Be open to sharing experiences and give someone else the gift of your time.

Thanks for being a part of our community. It’s up to all of us to ensure that IHadCancer remains a place for us all to call home when dealing with the ups and downs of a cancer diagnosis.

JVRPROSTATECANCER's picture
JVRPROSTATECANCER Connect

Survivor: Prostate Cancer

I write this to help other men. If you have been recently diagnosed with prostate cancer or have a loved one who has, please read on and share with your family. It is a scary diagnosis, but early detection and medical advances in treatment offer great hope for a long and relatively normal life. However, if you hear the words Cryotherapy, Cryosurgery or Cryoablation from your Doctor, get up and look for another Doctor. Cryotherapy is very attractive to patients with localized prostate cancer, vs. radical prostatectomy, radiation, radioactive seed implants and other treatment methods. Cryoablation is sold as a simple, out-patient procedure where under general or epidural anesthesia, needles are inserted into the prostate through the perineum to freeze the prostate and select surrounding nerves to kill the cancer cells. http://www.cancer.org/cancer/prostatecancer/detailedguide/prostate-cancer-treating-cryosurgery http://endocareprostate.com/cryotherapy?gclid=CjwKEAjw8bO3BRDp0bP_vL7_lASJACL_d6wRESwkho40ofd5_ToEirhenpvM_AEo05cRFdaf3a2CRoCWETw_wcB http://www.hopkinsmedicine.org/healthlibrary/test_procedures/urology/cryotherapy_for_prostate_conditions_92,P09351/ But, this attractive procedure has many, many downsides! Among these are that it doesn’t remove the cancerous prostate. Targeting specific, microscopic cancer cells with needles and freezing is unrealistic and urinary and sexual performance side effects can be huge. In my case, I was diagnosed with a PSA of 4.0, and a Gleason score of 3+3 in May, 2013 and had the cryosurgery in August, 2013 and the cancer was limited to one section of the prostate. Immediately after the surgery I could not urinate and had to wear a Foley catheter and carry a urine bag for months. The urinary retention continued (meaning I have a blockage caused by the cryotherapy) after the cryosurgery and now need to self-catheter to urinate and do so no less than 6 times per day. Sexual function is totally gone and the only way to get an erection is by injecting Trimix (a mix of erection aiding drugs) right into the penis. After cryosurgery my PSA went down from 4.0 to a low of 0.7. However, in May, 2015 the cancer came back with a PSA of 4.0, a Gleason score of 4+3=7 and it has spread to other parts of my now very small and undefined prostate (due to the effects of the cryoablation). At that time my doctors were concerned that the cancer had metastasized. Thank God all bone scans and MRI’s were negative. My new Doctors at a major, world renowned cancer hospital told me that I should have never had cryosurgery, that they see cancer recurrence, urinary and sexual problems after the treatment all of the time after patient have cryotherapy. They also have little data as to expected and advisable PSA levels after cryoablation,. Moreover, other treatments, such as then a prostatectomy are not available as the cryoablation can make the prostate stick to the rectum and make it them impossible to remove. I am very fortunate that they prescribed external beam radiation treatments which I had in October-November, 2015 along with hormone therapy consisting of a Lupron injection every 3 months. I have now had my third injection (plan to stay on Lupron for 1 year to 18 months) and and my PSA is now down to 0.04 after radiation and 6 months of hormone therapy with Lupron. So consider all of your options carefully, talk to your Doctor, get a second and even third opinion before you have treatment. I think you will find that most urologist and oncologists will advise you to stay away from the treatment known as cryotherapy, cryosurgery or cryoablation.

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