Living with Prostate Cancer: Meet others & introduce yourself

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

kujhawk1978
Kevin -Thanks for the helpful information. All the best to you.

OUMike

I will be having the external beam radiation.

I was diagnosed with cancer in February of 2018. My PSA had gone from 2 to 16. After the biopsy, CAT scan, bone density scan and MRI my urologist wanted to operate immediately. I luckily went for a second opinion at Moffitt Cancer Center in Tampa. I first met with a urologist there. He did not recommend I have surgery because the cancer had spread outside of my prostate. The thought being that if I had surgery I would still need radiation therapy to kill the other cancer cells. I was then sent to a Moffitt Radiation Oncologist who reviewed my medical records and recommended another Radiation Oncologist that ran the brachytherapy department. They started me with hormone deprivation therapy (Lupron) to shrink the tumor, stop the spread and make the radiation treatment more effective. I then had the first of 2 scheduled high dose internal radiation treatments. It is an all day procedure where they put you under and wake you several times. The high dose radiation treatment lasted 27 minutes. The Doctor was so happy with the results he cancelled the 2nd Brachytherapy and reduced the external beam radiation from 45 fractions to 25.I continue to get the hormone deprivation therapy every 3 months. Side effects are no day at the beach but if you tell your medical staff everything and do what they say it is manageable. I have 3 more treatments left. Looking forward to moving past this chapter.

My takeaway is that you get a second opinion. Go to a facility that is world renowned at treating cancer. Keep a positive outlook and fight like hell.

Best,
Dan

Hi @dmadi61, I appreciate hearing how you were able to gain clarity and confidence in your treatment choices through a second opinion. It's so important to be able to weigh all the options. What side effects are you dealing with and which one is the most challenging?

I was diagnosed in May, 2007 and had a radical prostatectomy. I was very fortunate in that the cancer had not spread and I have been cancer free since July, 2007.

The side effects that are most difficult to deal with for me are from the Androgen deprivation. Total lack of libido. Lessening of mental acuity is awful. My memory is horrible now.

@tmclain, I'm glad you joined the Prostate group too. Was prostatectomy the only treatment you needed to have?

@dmadi61, cognitive impairment is so frustrating. While not the same cause, you may find some of the blogs posts in the MCI page helpful for dealing with memory issues. You can follow the blog here: https://connect.mayoclinic.org/page/living-with-mild-cognitive-impairment-mci/

Here are a few articles to get you started:
- Revisiting Brain Exercises https://connect.mayoclinic.org/page/living-with-mild-cognitive-impairment-mci/newsfeed-post/revisiting-brain-exercises/
- Coping with Memory Loss in Social Situations https://connect.mayoclinic.org/page/living-with-mild-cognitive-impairment-mci/newsfeed-post/coping-with-memory-loss-in-social-situations/

Have you developed any tricks for dealing with memory issues?

Male 64. Had a RP in Jacksonville May 15/19. PSA moved from 3.3 to 5.5 then quickly to 6.5. Biopsy confirmed with a Gleason 8. Surgery went well, with all margins & 24 lymph nodes clear. Gleason reduces to 7. Only issue is DVT’s due to surgery. Also numbness on skin ( I assume DVT related) . All important PSA test scheduled for later August

@paul805 I'm new to this forum so forgive me if it's been covered earlier, but what is RP.

Thanks,
Dave