Embrace it.

By CommunityMember758

1 min read

Advanced prostate cancer diagnosis

5 years into Prostate cancer and now no longer curable. This is my life now and as strange as the word embrace is it's what I need to do. I'm still a warrior and exercise, eat well, take my meds, talk about it and have a positive attitude. This is my life.

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JillBrodie Community Admin
Hi <inline-mention username="CommunityMember758" user-id="4829453"/> I can't even imagine how difficult this must be for you. I am so glad you have such a positive mindset and you are taking care of yourself. You are a warrior!! We are here for you when ever you want to share or vent. Jill, <a href='https://prostatecancer.net' target='_blank'>prostatecancer.net</a> team
George V Member
Just found this group. Impressed. Just had a whole body scan - not a very promising picture. Gleason score of 9 and all 6 biopsies showing high grade cancer. Cancer just starting to spread to outside the prostate tissue. My only choice I think, is androgen deprivation but where to go for best results? Mayo wants to start radiation immediately but I think that's a mistake and I won't do it. I live in Iowa but will go anywhere to find the best medical oncologist for the the right treatment. By the way, I am a very active 93 year old.
1. Big Red 57 Member
 Good afternoon George - In doing my research I found the following information on treatment options, something to consider; Treatment Descriptions RP or Radical Prostatectomy Surgery – A radical prostatectomy is an operation to remove the prostate gland and some of the tissue around it. It is done to remove prostate cancer. This treatment option indicates an operation done by open surgery. In open surgery, the surgeon makes an incision to reach the prostate gland. Depending on the case, the incision is made either in the lower belly or in the perineum between the anus and the scrotum. When the incision is made in the lower belly, it is called the retropubic approach. The surgeon may also remove lymph nodes in the area so that they can be tested for cancer. When the incision is made in the perineum, it is called the perineal approach. The recovery time after this surgery may be shorter than with the retropubic approach. If the surgeon wants to remove lymph nodes for testing, he or she must make a separate incision. If the lymph nodes are believed to be free of cancer based on the grade of the cancer and results of the PSA test, the surgeon may not remove lymph nodes. Laparoscopic Surgery – For laparoscopic surgery, the surgeon makes several small incisions in the belly. A lighted viewing instrument called a laparoscope is inserted into one of the incisions. The surgeon uses special instruments to reach and remove the prostate through the other incisions. Side effects from surgery include possible incontinence for several months (6 months to 1 year) Robotic Surgery – Robotic-assisted laparoscopic radical prostatectomy is surgery done through small incisions in the belly with robotic arms that translate the surgeon’s hand motions into finer and more precise action. This surgery requires specially trained doctors. Seeds or Brachytherapy – Also known as brachtherapy, a word derived from the Greek prefix brachy, meaning “short” or “near”, because small seeds containing radioactive material are implanted directly into the prostate gland near the cancer. Brachytherapy, or permanent seed implantation as it is often referred, is a minimally invasive procedure performed as a single outpatient treatment under spinal or light general anesthesia. The procedure itself involves the placement of tiny radioactive seeds inside via thin needles into the prostate using ultrasound guidance. In contrast to the biopsy, the needles do not go through the rectum, rather they are placed through the skin just above the anus and below the scrotum. Prior to the implant, seed placement is carefully planned and mapped out using sophisticated computer planning. Brachytherapy delivers substantially higher doses to the cancer than any type of external beam radiation or High Dose Rate (HDR). Seed Implantation delivers substantially less dose to the surrounding normal tissues and thus less risk of injury to the bladder, hips, small bowel and other organs far away from the prostate. 10 year from treatment – 82% progression free. 12 year from treatment 90% progression free. EBRT or External Beam Radiation and Seeds or Brachytherapy – A combination (multimodal) therapy involving the use of both EBRT or External Beam Radiation Therapy in conjunction with Seeds or Brachytherapy. 10 year from treatment 91% progression free and 12 years from treatment – 92% progression free EBRT or External Beam Radiation and ADT or Androgen Deprivation Therapy – A combination (multimodal) therapy involving the use of both EBRT or External Beam Radiation in conjunction with ADT or Androgen Deprivation Therapy. EBRT or External Beam Radiation Therapy – External beam radiation therapy uses a high-energy x-ray machine — called a linear accelerator (linac) — to direct radiation to the prostate. The procedure lasts a few minutes, and is typically repeated several times a week over several months. Types of external beam radiation treatments include: Three-dimensional conformal radiation therapy — a technique where the tumor is mapped with imaging equipment and then treated with multiple beams of radiation. Intensity-modulated radiation therapy (IMRT) — a treatment method in which the intensity of the radiation can be changed during treatment. In conventional therapy, intensity is set for the entire treatment session. Seeds or Brachytherapy and ADT or Androgen Deprivation Therapy – A combination (multimodal) therapy involving the use of both Seeds or Brachytherapy in conjunction with ADT or Androgen Deprivation Therapy. 10 years from treatment 93% progression free EBRT or External Beam Radiation, plus Seeds or Brachytherapy, and ADT or Androgen Deprivation Therapy – A combination (multimodal) therapy involving the use of three different treatments, EBRT or External Beam Radiation plus Seeds or Brachytherapy in conjunction with ADT or Androgen Deprivation Therapy. 12 years from treatment 92% progression free. Protons – A form of external-beam radiation therapy delivered by proton beams rather than the photon beams used in EBRT. Protons are a type of charged particle. Proton beams differ from photon beams mainly in the way they deposit energy in living tissue. Whereas photons deposit energy in small packets all along their path through tissue, protons deposit much of their energy at the end of their path (called the Bragg peak) and deposit less energy along the way. In theory, use of protons should reduce the exposure of normal tissue to radiation, possibly allowing the delivery of higher doses of radiation to a tumor. Proton therapy has not yet been compared with standard external-beam radiation therapy in clinical trials. HDR or High Dose Rate Brachytherapy – HDR (High Dose Rate) brachytherapy involves the temporary placement of radioactive seeds throughout the prostate. Approximately 12-16 plastic catheters are placed, under anesthesia, into the prostate gland through a template which is then sutured to the perineal skin below the scrotum. The small radioactive seed which is emitting radiation at a high rate (high dose rate) is directed down the catheters to sites in the prostate as determined and directed by a computer. The computer controls the length of time the seed stays in its position and therefore the dose delivered. After sequentially delivering the seed at each position, the seed is removed, leaving no radioactive material in the gland. This may be repeated several times over a few days. This type of treatment sometimes requires an overnight stay but often can be done as an outpatient treatment. The advantage of HDR is that the operator can adjust the dose to the gland. High dose rate does not mean a higher dose is received to the prostate. Hypo EBRT or Hypo Fractionated External Beam Radiation – Hypo fractionated radiation delivers higher doses of radiation through pencil-thin beams to targeted areas of the body in fewer treatment sessions. This prostate cancer treatment is painless and noninvasive. Typically, individual treatment sessions last between 30 and 90 minutes, depending on the type of tumor. Hypo fractionated radiation may be delivered in sessions over several days or it may be limited to a one-time occurrence. HIFU or High Intensity Focus Ultrasound – The HIFU (High Intensity Focus Ultrasound) procedure may be an option for men diagnosed with organ-confined prostate cancer. During the procedure, precisely focused ultrasound waves raise the temperature of the targeted prostate tissue to 195 degrees Fahrenheit in 2-3 seconds. This rapid-firing heat destroys the targeted tissue while leaving structures outside the targeted tissue unharmed. Cryo or Cryosurgery – Cryosurgery is a procedure that involves killing cancer cells by freezing them and surrounding them with ice crystals. Tiny needles are placed directly into the prostate then argon gases are passed through the needles and exchanged with helium gases. This causes a freezing and warming cycle. A urethral warming catheter keeps the urethra warm throughout the procedure to prevent the urethra from freezing. For prostate treatment, the needles are often inserted using transrectal ultrasound (TRUS) guided technology. Cryosurgery is more often used as a backup-option rather than as primary treatment. ADT, Androgen Deprivation Therapy or Hormone Therapy Hormone therapy is also called androgen deprivation therapy (ADT) or androgen suppression therapy. The goal is to reduce levels of male hormones, called androgens, in the body, or to prevent them from reaching prostate cancer cells. The main androgens are testosterone and dihydrotestosterone (DHT). Most of the body’s androgens come from the testicles, but the adrenal glands also make a small amount. Androgens stimulate prostate cancer cells to grow. Lowering androgen levels or stopping them from getting into prostate cancer cells often makes prostate cancers shrink or grow more slowly for a time. However, hormone therapy alone does not cure prostate cancer and eventually, it stops helping.
Sue Franke Moderator & Contributor
<inline-mention username="CommunityMember758" user-id="4829453"/> My husband is in the same place as you - stage 4 prostate cancer. Can't be cured. We accept that - there's nothing else really that we can do. But we continue to live our life. We enjoy family, do the things we love (although sometimes limited) and continue to live our best lives. All those things you mentioned - exercise, eat right, positive attitude, take meds, make a world of difference. Best wishes as you continue being a warrior.
Big Red 57 Member
I was in the same boat as you, but Doctors and tests can be wrong, continue to research and get second opinions. My PSA score was 18 and my MRI found 3 lesions in my prostate, and a suspicious lymph node, had the biopsy and my Gleason score was 9 - was told it was Stage IV and not curable. Went ahead with the PET scan to see if and where it had spread. Last Wednesday I got the report from Northwestern Medicine, they always send me an email once anything is uploaded and I couldn't bear to look, I wanted for the Urologist to call and finally at the end of the day I decided to take a look, I skipped to the end and saw there were only two tumors, both inside my prostate and now three suspicious lymph nodes, but they are small, two are 0.3 cm and one is 0.6 cm - the Urologist called me that evening and confirmed the cancer has not spread anywhere and he actually mentioned the word "cure". So now I am lined up for visits with a medical and radiological oncologist next week to decided on treatment. There is a chance I can be accepted for a clinical trial using Relugolix/Orgovyx. I would still like to know if removal is an option (of the prostate and those lymph nodes) - long story short, I thought I was a goner, the less than 30% survivors for the upcoming 5 years and now, after a detailed and thorough test, my Doctor is saying I have another 20 years ahead of me. There are 12 different FDA approved treatments for prostate cancer - and more being researched now - breakthroughs happen everyday - it may sound corny, but remember what Jim Valvano said "Don't give up, don't ever give up". God Bless You and stay strong.
CommunityMember758 Member
I'm good Bigred. Prostate removed 5 years ago. Doing Lupron and Erleada. Testosterone down to 7 and PSA went from 14.9 to 0.05. Will be adding Keytruda starting Thursday. Thanks
CommunityMember9d9e6e Member
I’m 2 weeks post radiation therapy and my urinary track is still burning plus I get bladder spasms and think I need the bathroom ASAP but usually a false alarm. Oncologist says it takes 4-6 weeks to calm down. any ideas in the meantime? It’s quite uncomfortable and the burning almost causes my knees to buckle.
JillBrodie Community Admin
Hi <inline-mention username="CommunityMember9d9e6e" user-id="6924631"/> thanks for reaching out. I can hear how uncomfortable this is for you. I am sending you a forum discussion that includes some suggestions, I hope this helps. Jill, <a href='https://prostatecancer.net' target='_blank'>prostatecancer.net</a> team <a href='https://prostatecancer.net/stories/burning-sensation' target='_blank'>https://prostatecancer.net/stories/burning-sensation</a>