Looking for options in Northern California

[Seat15c]

Hello all, I am new to the forum and could use some advice/recommendations for a center/Dr for treatment.

I'm in San Jose CA

Black male 57

Current PSA 8

Risk intermediate

Father has PC

I was diagnosed with PC in fall 2021 via random needle biopsy with 6 3+3 samples and we went on AC with s PSA of 4.3 in 2023 PSA started to climb and by Feb 2024 after 3 tests it has doubled and my surgeon ordered a MRI guided biopsy which I had in July 18 cores 8 positive 7 are 3+3 one 3+4 10% is 4. I have talked to UCSF about surgery (nice lady) or IMRT/SBRT with Months of ADT (Dr seems capable but did not mention much about ADT side effects or quality of life) I asked for a referral to a seed radiation Specialist, the external beam and the radiation guy does not do BT therapy and said for my cancer it does not meet the SOC for BT

We ordered a genetic test and I am going to do the Prostox test

I have access to Kaiser via wife's insurance

Stanford where I started this journey is in negotiations with BC/BS and might now cover treatment, so I and exploring other options

And suggestions for facilities or MDs I should engage with,?

[Jancapper]

I used Dr. Logston at Sutter Heath located in downtown Sacramento. November 2022 received HDBT + 2 yrs ADT + EBRT. Very good results so far with PSA being undectable. Received last shot of Leupron July 11, 2024.

[Seat15c in reply to Jancapper]

Glad to hear you are doing well, are you open to sharing your age and diagnosis? You started treatment in 2024?

[Jancapper in reply to Seat15c]

No problem, just never figured out how to complete my bio info. Visited PCP in early 2022 for sore shoulder and numb arms. She did several metabolic tests as well as a precautionary PSA evaluation. Everything was normal except for my evlevated PSA which was 11.5. Sent me to a urologist. Completed a 4k test. Received a number of 81. Doc informed me that I had a 19% chance of an aggressive tumor and therefore a 81% chance of a non aggressive tumor. He even told me that I could watch and wait if I was a betting man. Chose to follow up as I still had a ten year old son. Trans rectal biopsy in early 2022, 3/12 cores positive, all being Gleason 4 + 5. Bone scan, MRI and Petscan all demonstrated that growth was limited to prostate. Met with two different RO and discussed prospective treatments. Decided on high dose brachytherapy plus ADT plus 25 sessions of EBRT to full pelvis. All went well. PSA dropped immediately and has remained undectable ever since.

[Seat15c in reply to Jancapper]

Thanks for sharing is a 4K test a decipher test? What lead you to radiation opposed to RP? I'm waiting on Decipher results but concerned about options if I have recurrence

[Jancapper in reply to Seat15c]

I share the same concern if I should experience BCR. However, for me having a GS 9 cancer, the chances of a micrometastasis is elevated. That is same reason why I also selected to receive full pelvic radiation as compared to prostate bed only.

For high risk patients, it has been demonstrated that the best chances of long term survival are with the treatment I received. Not only did i read this in published articles, but both my urologist as well as my RO said so as well.

[pd63]

You would appear to be just on the favourable/ unfavourable intermediate risk borderline is your psa less than 10, what duration ADT have you been advised.

[Seat15c in reply to pd63]

Yeah I was told unfavorable, 6 months of ADT,

I'm sure I don't have a good understanding of why I would not be a good candidate for BT OR why I would need ADT for External Beam but not for RP

Thanks for the reply

[Tall_Allen]

I think Joe Hsu at UCSF does HDR brachytherapy, Alexander Gottschalk does SBRT, or you can continue on AS watched by Matt Cooperberg.

[Smallfall in reply to Tall_Allen]

Dr. Hsu did my HDR Brachy at UCSF. Compared to all of the other procedures and treatments I've received, the experience was great. Not only did he do the HDR Brachy without any pain, but when I consulted with him about the 12-18 months of ADT recommended by my urologist, he said 6 should be enough; and when I asked him about the Space oar my (now previous) rad. oncologist wanted to do, he said he didn't think it was necessary. I went on to have 25 IMRT in Chico. This was over 3 years ago and I've never had a PSA reading oover .05 since then.

[Seat15c in reply to Smallfall]

Thanks for sharing your experience, any side effects from the breaky therapy or the hormone therapy, also curious how old are you

[Smallfall in reply to Seat15c]

I'm 75, was 72 when I had the HDR Brachy. I was not aware of any side effects from the HDR. I didn't like the ADT at all; I had numerous side effects, and was glad to have it cut short. However, if it had anything to do with my apparent success I won't knock it.

[Don717 in reply to Smallfall]

Not following...You had BT and it failed? Or was it in combination with IMRT? Thanks!

[Smallfall in reply to Don717]

No. I had BT and imrt and it has spent been a great success ;all psa's less than .05

[Don717 in reply to Smallfall]

Excellent, so you had BT/IMRT Boost. Gotcha. Thanks!

[MackworthGuy in reply to Smallfall]

I (60M) did HDR and IMRT through Stanford 2 yrs ago. Positive experience overall. I did have a whacky test and subsequent scary recommendation a year ago (turned out to be an anomaly) and saw Dr. Hsu at UCSF for 2nd opinion. I was happy with both. We have great resources in this area and I think I’ve learned that when there are choices like this, finding a doc you are comfortable with in terms of style and communications is that extra intangible that really helps. I’m not excited with my present RadOc but he is convenient. But I’m constantly 2nd guessing because of that. So find a hospital/doc/treatment that boosts your confidence in decisions.

[BobC1234]

I had brachytherapy at Stanford with Dr Buyounouski.

[Seat15c in reply to BobC1234]

Can you share you profile and if you had ADT, I'm trying to understand why I was not presented that option at UCSF was told BT is not a standard of care, I'm wondering if its my age

[Jancapper in reply to Seat15c]

HDBT is a very aggressive therapy for a GS 6 or 7 cancer. I think generally, it is reserved for GS 9 or 10 patients.

[MackworthGuy in reply to BobC1234]

Same here, for one HDR followed by 23 IMRT and no ADT based on decipher score and AS experience.

[Seat15c in reply to MackworthGuy]

Holy smokes you and I have a very similar history in 2022 my PSAs was 4.2 which led to biopsy I got the biopsy and they found eight cores of 3 + 3 Gleason when on active surveillance about a year later PSAs Rose to five then 7.5 2 months later July of this year did targeted MRI biopsy 18 cores eight of which were 3 + 3 and one was 3 + 4 10% for I've been meeting with a ton of people radiation oncologist just got back my decipher score 25 going to do a PET scan the radiation oncologist suggestion is same treatment you got high dose brachytherapy plus 13 treatments of imrt. I'm curious how have the side effects been for you specifically urinary bladder and erectile thank you so much for sharing your information was super helpful wondering where did you have your treatment done

[MackworthGuy in reply to Seat15c]

So, keep in mind that it really seems like side effects vary greatly per patient with similar therapies. For me urinary side effects are minimal. Through treatment and shortly after there was urgency but no real issue other than knowing where bathrooms are wherever you go. Later urgency was so great I kept a jug in the car just I case..that lasted maybe 3 months. Then it settled down again but I still know I have to have a plan. I have slight leakage occasionally when running, but then I just empty and all is good again. Bowel function has really slowed down. Things just don’t move through my system at near the same speed as prior, but no other issues. Erectile function has been the disappointment for me, but I never used the low dose drugs as suggested and it’s not a huge priority for me at this point in life. But yes, this has been the frustration for me. I think every function changed about every 2-3 months thru the first 18 months, sometimes worse sometimes better, but all seems to settled to the new normal now 24 months out. Reach out an PM if you have more questions or just need to talk.

[Seat15c in reply to MackworthGuy]

Thanks for the info, I will definitely reach out how old where you when you started treatment?

[MackworthGuy in reply to Seat15c]

Started active surveillance around 54 and began the HDT at 58.

[BobC1234]

click my name and you can see my profile

[gualala]

After briefly treating at Sutter, I went to UCSF. Dr. Shinohara was my urologist and Dr. Gottschalk my oncologist. I am unfavorable intermediate. Elected radiation and 4 months of ADT per Dr G's advice. Received the radiation at Mt. Zion in SF. ADT is tough but I am getting over it now. I'm glad I went to UCSF.

[Seat15c in reply to gualala]

I started at Stanford for Biopsied and 7 3+3 cores so we did AC last MRI guided showed new 3+4 legion I'm talking to UCSF now, spoke to a surgeon then a radiation oncologist, ordered decipher surgeon is pushing for surgery obviously, but did tell me to get a psma PET scan and decipher, I'm going to get a prostate toxicity test to see if I'm an ideal candidate for sbrt, I'm also trying to get a meeting with a breaky therapy doctor to explore those options the recommendation thus far is either imrt with hormone or sbrt with hormone, I'm curious how has the hormone therapy been for you how old are you I'm 57 I've heard that age plays a part in the amount of fatigue

[gualala in reply to Seat15c]

The more aggressive your cancer, the greater the chance of micro metastasis to your pelvic area. The Decipher test helps determine that along w your Gleason score.

If there is a substantial risk of micro meta then, in my view, surgery is not a v good option since you would end up doing radiation anyway.

[gualala in reply to gualala]

You don’t do adt w surgery. So I guess that is a plus. If you have aggressive cancer, don’t f*ck around. You need an equally aggressive response. Dr. Gottschalk is a v smart doctor plus he carefully read all my records and spent well over an hour w me discussing options. If you have a low decipher score you might avoid adt.

[Laguy01]

i am not from your area, but I have PC with gleason scale 8. Doc. Told me I was stage 4A. I have consulted with my URO, ONC, RO and surgeon. My pmPc has moved into my lymph node and was told I am not a candidate for surgery. But what I have been told by RO and what I have read, radiation has equal or better outcome. I start radiation Monday, I have been on HT for over a month. Oh, my PSA started at 4.2 and at last check was down to 1.44.

There are so many opinions on this subject. I would just get a good doctor and get second or third opinions. I was told to eat healthy and Pray. Go online and read, read, read. I do try to eat healthy and a take my meds along with a hand full of other over the counter stuff. Stay active and positive. God Bless!

[j-o-h-n]

It is my learned opinion that you join us in the Advanced Prostate Cancer "Ward". Seat 15c is open and available at this time......But better hurry, seats fill fast, especially those not obstructed by a support column.

Good Luck, Good Health and Good Humor.

j-o-h-n

[Mgtd]

Sounds the old Yankee stadium.