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5 days ago · Living with Prostate Cancer: Meet others & introduce yourself in Prostate Cancer

Your oncologist is technically correct, eventually..The question is when…?

It may be helpful to this group if you add your clinical history, diagnosis – is this a recurrence or were you diagnosed with metastatic disease – was it in lymph n nodes only, is it in your bones, organs…, Gleason Score, PSA doubling and velocity times, when you started treatment, your age, overall health status…

I would consider reading the NCCN PCa patient guidelines. Those will give you a starting point on what the urology, radiation and oncology communities agree as to the standard of care for PCa.

Do some research on intermittent ADT, if it is something you and your medical team is an option for you, that may extend the time to resistance to ADT.

The way ahead depends on the progression and clinical data associated with your specific PCa – is it high risk, GS 8 or above, are your PSA doubling and velocity times fast, how long have you been on ADT, how ow is your T while on ADT, less than 20 is best…

There may be a number of treatment choices ahead and you and your medical team will have to decide, Provenge, Xtandi, Taxotere, Jetvana, Radium 223.

Your posts indicates your PCa is under control, try and relax, live, do your research, talk with your medical team. There are so many new and emerging treatments that PCa may become like diabetes and AIDS, a chronic disease that is managed through combination therapies that are constantly updating.

Here's one link:

https://pcnrv.blogspot.com/2019/12/optimal-chemohormonal-sequencing-for.html

Here's another:

https://www.nccn.org/patients/guidelines/content/PDF/prostate-patient.pdf

Kevin

Dec 3, 2019 · Living with Prostate Cancer: Meet others & introduce yourself in Prostate Cancer

I live here in Kansas City and have a radiologist, urologist and oncologist on my medical team who are quite competent. I went to Mayo for two reasons, I liked Dr. Kwon’s approach to treating PCa and they had the C11 Choline scan.

After the initial scan and consult in Jan 17 all treatment has been done here in Kansas City by my medical team – the Lupron shots, taxotere and the 25 more IMRT treatments. My radiologist did consult with my Mayo radiologist about the dosage, margins, boosts to the identified lymph nodes, treatment field…

I did return to Mayo three more times for subsequent C11 Choline scans and consults. Since I finished my last Lupron shot in May 18 all my urology labs and consults have been done here in KC. I updated my Mayo team through the portal and my medical team has also followed up with Mayo.

It’s your decision, depends on what your local medical team has in terms of medical technology, their approach to treatment and willingness to work with other medical experts as a team to develop and implement the best possible treatment specific to the clinical data associated with your PCa and your preferences as you balance quality and quantity of life.

I am blessed by a group of medical experts from a variety of practices and institutions who work together, leaving their egos out of the decisions.

Kevin

Oct 19, 2019 · Excercise After Prostatectomy in Prostate Cancer

My experience going through treatment which includes surgery, radiation, ADT and chemotherapy that exercise is perhaps the most effective way to mitigate the SEs. That being said I don't think it mitigated the hot flashes or the joint and muscle stiffness but I kept my weight under control, my cardiovascular health and had no issues with glucose, cholesterol, becoming pre-diabetic…So, do what you can, I swam, lifted weights, used the elliptical, walked the dog, played basketball, rode my bike, went skiing, hiked in the mountains.

Aug 17, 2019 · Is Penile lymphedema a side effect of localized radiation? in Cancer

I have two separate radiation treatment, SRT which involved 39 IMRT treatments to the prostate bed, 70.2 Gya and 25 IMRT to the pelvic lymph nodes, 45 Gya. I did not experience the SEs you describe for your husband

Jul 8, 2019 · Living with Prostate Cancer: Meet others & introduce yourself in Prostate Cancer

The C11 Choline and Axumin scans are both FDA approved for recurrent PCa, thus they are covered by insurance. Mayo generally accepts you as a patient for their C11 Choline scan when your PSA reaches 1.5. That is higher than most radiology medical specialists will tell you to be successful with SRT to the prostate bed. Most will tell you for SRT to be successful your PSA should only be .3 to .5. That’s the dilemma, the higher the PSA, the greater the probability the scan will locate the recurrence. The Aximun scan does work better at lower PSAs, my radiologist want to scan when my PSA hits .4 using the Aximun scan here in Kansas City

One thing to consider is the experience of the personnel reading the scans. A medical center just starting up their program may not be the same as Mayo in Rochester who has extensive experience with the C11 Choline.

While overseas in Europe and Australia the PMSA scans are in widespread use, here in the US they are in clinical trials. They are definitely better than the C11 Choline and Aximun scans, especially at lower PSA levels.

I had 4 C11 Choline scans at Mayo, it was amazing to sit with my radiologist as she showed me the 3D IMRT treatment plan she built using the images from the C11 Choline scan…think smart versus dumb bombs.

There is no doubt newer imaging can be a factor in determining the treatment plan. It’s not inexpensive, about $1800 out of pocket for each C11 Choline scan. The question I asked and so should you, “will this change the treatment plan if it locates the recurrence…” for me the answer was yes.

Kevin

Jun 4, 2019 · Excercise After Prostatectomy in Prostate Cancer

Throughout my treatment, surgery, Lupron, radiation and taxotere I have done everything but run – ride my bike, ski, swim, hike in the mountains, elliptical, basketball..,

My not running is tied to back problems a few years ago. My orthopedic doctor said to give up running as it was not good for my joints…

I’m no doctor so can’t say that running is tied to your problem, if it was then other forms of aerobic and strength exercises could also cause what you are experiencing. I have not heard of any correlation on any of the online PCa communities I participate in.

It is likely something else so consult with your medical team.

As to diet and exercise, well, it just makes sense that they can play a role in mitigating side affects such as CVD, metabolic syndrome, bone health…

Also, if you keep an active lifestyle and reasonable diet it may mean you can enjoy doing the things you love to do, which can impact your attitude about living with PCa which along with diet and exercise can play a role in your QOL.

Kevin

May 28, 2019 · Sharp pain in groin and penis started two weeks after catheter removal in Prostate Cancer

I had robotic surgery in Jan 14. Went in on Monday, out on Tuesday. On Wednesday I was out walking. A week later the catheter was out and I was back at the gym playing basketball, lifting weights. What you describe does not sound “normal.”

May 11, 2019 · prostate cancer treatment choices in Prostate Cancer

I chose robotic surgery in Jan 14 when I was diagnosed. At the time, it was that or radiation.

I felt surgery gave me the best chance of the gold ring, the cure. I also felt comfortable in the hands of a very skilled surgeon.

It was a very successful surgery, T2CNoMx, GS8, margins, ECE and seminal vesicles negative.

I was up and walking the afternoon after my surgery and discharged the next day. At home I started with short walks and gradually increased them. The catheter was not an issue, didn’t need any pain medications.

A week after surgery I was playing basketball, the catheter came out and I was dry, the surgery was nerve sparing so recovered function in 12-18 months with the help of Cialis.

I felt that if surgery failed, radiation would be an option to treat recurrence, the opposite was not necessarily true. So, having an option in case of failure, BCR, was important to me.

You can research pre-operative advice, if you go the surgery route your medical team should give you pre and post operative instructions, heck, there are videos you can watch of the surgery if you want, I did.

My surgery was successful in the hands of a very skilled surgeon and his supporting team.

Unfortunately I had BCR after only 18 months, SRT failed but after doing 18 months of ADT, six cycles of taxotere and 25 more radiation treatments my PSA remains undetectable a year after completing that regimen.

If you decide on surgery the choice of your surgeon is important. It helps if you are in good physical shape and your health is good, weight, BP, cardio…I was 57, weight under control, I was physically active, played basketball, lifted weights, ride my bike, swam, hiked in the mountains, went skiing…

Times have changed since my surgery and there are many more treatment choices, better imaging than the CT and MRI, combination therapy, just depends on how aggressive you and your medical team want to be but the tenets remain the same, do your homework, know your options, make your decision based on quality of life, side affects, possibility of a cure or length of remission. Be at peace with that decision and enjoy your time after in remission.

I hope whatever your decision it brings you long term remission or that “cure!”