Your thoughts - treatment plan

[jazzlover2]

All, thanks for all of your support and information on prior posts. This one is a little long...

I wanted to run a treatment plan past you for thoughts. I have Intermediate-favorable prostate cancer. I am in the NYC area and will seek treatment locally. Three PSA scores were 2.4 in 2018, 3.4 in 2019, and just recently it hit 5.1. An MRI confirmed a lesion fully contained within the prostate. 4K test indicated 83% risk of cancer. Biopsy showed 3 of twelve cores with cancer - two at 3+4/7 and one at 3+3/6. Johns Hopkins read the slides and confirmed those Gleason scores. A bone scan showed no bone metastasis. I have excluded surgery as an option - don't feel I need an invasive treatment given available options.

I had a consultation with Dr Tracy Ng regarding seeds and radiation. He can even do a high dose radiation treatment akin the Cyberknife or MSK Precise. I also went to NYU/Winthrop for a Cyberknife consult with Dr Blacksburg, whom I liked very much. He walked through all options objectively, not just Cyberknife - gave numbers/stats for each, had a frank discussion of side-effects. Plus he saw that I had another PSA test that came in at over 12 and was very suspicious of the result - saying it was out of line with the MRI and the biopsy results and could have been caused by a number of unrelated factors. He had me re-tested to be sure. That's why my latest PSA is 5.1 - still high, but not a crazy spike. I liked that he was the only doctor that questioned the strangely high PSA, and that won me over. Plus Winthrop has done something like 3-4,000 treatments and Dr Blacksburg has himself been doing them for 8 year (and did seeds prior).

I am hearing that seeds can have relatively harsh side-effects up front - my brother-in-law had urinary and bowel issues for weeks. Low-dose radiation will take too long, and I don't want to do the high-dose seeds, either because of early harsh side-effects. So I am selecting Cyberknife with Dr Blacksburg. Unfortunately, in parallel, my wife will be undergoing a full mastectomy in one breast for DCIS (too much there to do a lumpectomy). Thankfully she tested negative for BRACA mutation so additional surgery is not under consideration. But we were diagnosed within days of each other. I want to be fully focused on her recovery - she goes for surgery in the first week of Dec. So Dr. Blacksburg recommends hormone treatment for me to keep the cancer from progressing for a couple of months while I take care of my wife. When my wife has recovered, I will schedule Cyberknife.

Any thoughts - I am feeling pretty good about hormone treatment to buy some time, but wondering what your experiences have been, plus your overall thoughts on Cyberknife for 3+4/7 prostate cancer.

Thanks for you time everyone!

[Darryl Partner]

Since you are in NYC, please consider going to the NYC support group see the schedule here: malecare.org/nyc

[Handdrummer777]

Sounds like you've intelligently picked the best treatment plan. Sorry that your wife has to deal with her medical issues at the same time. But this could reinforce your mutual bond, in caring for one another through these treatments.

Bless you on your journey together! Consult with this group as often as you wish. Tall_Allen is a wonderful, highly-informed resource for us.

Good luck!

[jazzlover2 in reply to Handdrummer777]

Handdrummer - I greatly appreciate your reply and support. In fact, just got my Lupron shot this afternoon and am looking forward to a few months of hot flashes and weight gain. My wife and I joke that between my Lupron probably adding breast tissue, and her impending mastectomy, we are keeping the family breast mass average in-tact. Some dark humor most others wouldn't appreciate! I agree regarding Tall Allen

[Handdrummer777 in reply to jazzlover2]

How many months of ADT? Is it longer than three months? Because you must anticipate loss (put to sleep) of libido, and resulting desire for sexual activity. You must at this point nonetheless keep the erections going, or risk some penile tissue damage and/or shrinkage. Nocturnal erections are suppressed in the no-T environment, mollified somewhat by daily Tadalafil.

I strongly urge you to check out Giddy ($100; getmegiddy.com) and Xialla ($50; xialla.com). These are brand-new, FDA-tested ED treatment devices.

You'll be experienced "testosterone flare" for a week or two, where you temporarily have a spike in T-levels. Enjoy this period before the sleepy-libido effect kicks in. That's when you will probably need a device to help keep the erections going.

Giddy and Xialla are both backed up with orders, so delivery takes months. But there's an interim solution if you're faltering.

I got through 18 months of ADT with my Loop device, which I had invented before but realized I had to rely on it during ADT if I wanted to preserve my sexual functioning. It worked beautifully.

If you message me privately, I will give you the Loop instructions -- super simple to make and you could try it tonight.

Good luck with your treatment plan and best wishes to your wife as well.

[Tall_Allen]

I had SBRT 10 years ago. Treatments themselves were nothing - lay on the bench for 5-10 minutes - 5 times and I was done (CyberKnife takes longer per treatment than the kind of SBRT I had). Early side effects began about a week later - frequency and urgency on both ends, some blood on the TP - and lasted about 2 weeks. I had some internal hemorrhoids that I had treated. I took Rapaflo for urinary frquency. I had a return of some urinary frequency about a year later, but nothing since then. No sexual side effects other than loss of ejaculate.

I recommend increasing your exercise regimen during treatments. Take no supplements.

Here's what you can expect:

pcnrv.blogspot.com/2018/10/...

[jazzlover2 in reply to Tall_Allen]

Tall_Allen, as always thanks for the info. Just got my Lupron shot today - looking to keep the PC in check during my wife's breast cancer surgery and recovery. I will get my Cyberknife treatment sometime in Jan or early Feb.

[Don_1213]

Sounds like a good plan to me. Current radiation treatment modalities for PCa are giving results equal or better to any other options, and due to better accuracy during the treatment, side-effects are lessening.

I had 45 IG/IMRT/ARC treatments. Side effects during the treatment were very occasional loose bowels, and a bit of irritation peeing. Flowmax helped with the peeing, Immodium with the loose bowels. Fatigue started setting in the last 2 weeks of treatment but was never overwhelming - just a feeling that I could easily take a nap pretty much at any time.

I think Cyberknife is coming in with similar side-effect numbers, and being on ADT until you are treated is a fine strategy. An advantage of pre-ADT before radiation is the cancer should shrink due to the ADT, making it a smaller target that needs to be treated, which lessens the potential for side-effects.

Personally (and I'm not a doctor) - I think you'll be fine with this plan.

Good luck and let us know how you make out!

[jazzlover2 in reply to Don_1213]

Don_1213, thanks for the support and info and glad you had minimal side effects. I am crossing my fingers for the same (or less!).

[Hidden]

You might want to research HIFU. I chose that treatment option over external beam radiation. I had been given a six month eligard injection in preparation for the radiation before I changed my mind. It did shrink the prostate a bit which was beneficial for the HIFU surgery. My prior TURP surgery for BPH was also a good thing for HIFU but not for RP.

[j-o-h-n]

When it rains, it pours.... Hopefully your wife will be fine after her procedure. I think hormones for a few months won't really affect you negatively....

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 10/31/2019 5:50 PM DST

[jazzlover2 in reply to j-o-h-n]

Thanks j-o-h-n, appreciate the positive vibes.