Advice for my husband, looking at treatment options

[MidwifeK]

My husband's history - I don't have all the PSA numbers currently.

He is 63 yrs now, under care of a urologist in a multidisciplinary group. No comorbidities other than well controlled hypertension.

Nov 2021

Diagnosed via MRI, biopsy. At that time Grade 2 Gleason 3+4 on 1 core, numerous Grade 1 cores, PSA ~5.  January 2022, Nanoknife.

Sept 2022

MRI showed increased activity, repeat biopsy showed new large Grade 1 3+3 core, in addition to numerous other grade 1 cores. Recommended treatment of the large cancer, we were hoping for AS after that. November 2022, Nanoknife.

March 2023

PSA 2.6

August 2023

MRI showed increased activity, PSA rising, now ~3.5. Biopsy 5 out of 7 cores Grade 2 Gleason 3+4, with perineural invasion.

In preliminary post biopsy conversations the urologist has suggested either prostatectomy or radiation therapy. This week we're meeting again with the urologist and soon with the radiation oncologist.

Truly wish I had found this site when he was diagnosed. After scouring this site and reading a lot of TallAllen's newsletters and reference papers, I think we've wasted time (and a lot of money), my husband possibly had unnecessary treatment with the second Nanoknife procedure, could have continued on AS, maybe we'd be in the same position now anyway. The Nanoknife procedures were significant, on both occasions he endured urinary retention for many weeks post op, self-catheterising. Erectile function has been impacted too by the Nanoknife procedures. And he has lost ejaculation, it's thought due to scarring. 

I don't have all the pathology results to hand, specially PSA results along the way, so I realise I'm asking for guidance without giving full information.

My questions are

- is it worth asking for second opinion on the biopsy samples? As they're all grade 2 (3+4) now, even if some were down-graded, treatment would likely still be recommended?

- To those here who know a lot about PCa diagnosis, treatment and management, is there a clear winner in terms of treatment?

- I have looked up SBRT here in Melbourne, and it's alluded to online but difficult to ascertain who provides it and if they're experienced. Can anyone recommend experienced clinicians?

Many thanks in advance.

[Tall_Allen]

This may help:

prostatecancer.news/2018/10...

But radiation on top of nanoknife-damaged tissue may require special care. SBRT may be too intense - I don't really know.

[MidwifeK in reply to Tall_Allen]

Thank you TallAllen, much appreciated.

[Leeaussie5]

Hi I am from Canberra. My RATP surgery was 4 years ago and still successful. I went to St Vincents in Sydney. My advice is: YES get a second opinion. The different ways they will explain things is useful even if much the same recommendation. (I was hoping for nanoknife or similar but one doctor said "look at these results, the dna of the whole prostate is changing". Useful perspective). Every cancer journey is different - good luck with yours.

[Hockeyforever]

Hello MidwifeK, I am 75 years and reside in Perth, Australia. After a diagnosis of prostate cancer in late 2022, I was almost lulled into a no need to rush decision making mode because usually prostate cancer is not an aggressive cancer. However I lost a daughter to child's leukaemia (ALL) which taught me for a cancer diagnosis, treatment is "go fast and go hard". So I didn't accept the 3 month wait I was offered for prostate cancer surgery and changed to a surgeon who offered a 2 month wait (which in hindsight was wise, refer my profile). I'll answer your questions with "I think" which means I have been informed by two independent practicing urologists or is my opinion. Nothing I write here is a recommendation.

- is it worth asking for second opinion on the biopsy samples? As they're all grade 2 (3+4) now, even if some were down-graded, treatment would likely still be recommended?

Answer: I think it would be a waste of valuable time.

- To those here who know a lot about PCa diagnosis, treatment and management, is there a clear winner in terms of treatment?

Answer: I think if at the time of diagnosis, prostate cancer is confined to the prostate, surgery offers a possible cure. Also if after surgery, histology reveals prostate cancer was no longer confined to the prostate, radiation is an option for more treatment. However if radiation treatment first then surgery treatment second is not an option.

- I have looked up SBRT here in Melbourne, and it's alluded to online but difficult to ascertain who provides it and if they're experienced. Can anyone recommend experienced clinicians?

Answer: I cannot help.

Your comment: "November 2022, Nanoknife" and another comment "second Nanoknife procedure" motivated me to read up on nanoknife:

oncologynews.com.au/latest-...

The article states in May 2022 the NanoKnife procedure was enrolling patients in a clinical trail. I'm surprised your husband could get NanoKnife procedure treatment for prostate cancer. Was he treated in Australia?

I hope surgery is still an option.

I wish your husband and you the best in your battle to defeat prostate cancer.

[MidwifeK in reply to Hockeyforever]

Many thanks Hockeyforever for your thoughtful response. Nanoknife is available in Australia, but it's not yet approved by TGA or pvt health insurance/medicare for treatment of prostate cancer, so the cost each time was around AUD$27k.

I had thought surgery remained an option after some radiation treatments, adding this question to the list for next consult with urologist. Thank you.

[JimmyStart]

Hi MidwifeK,

I am from Hobart and have had a PCa journey not unlike your husband's. Diagnosed with 3 + 4 in 2018, opted for Nanoknife in 2019, recurrence two years later, 3 +4 with with perineural invasion. For reasons relating to pelvic floor problems, I opted against salvage surgery and had SBRT/Cyberknife in Perth at 5D clinics in 2021. Have experienced minimal side-effects and PSA has been falling slowly, currently .65. I was informed by both radiation therapists and my oncologist at 5D that they had previous experience of salvage radiation following Nanoknife so may be worth following up with them. The treatment was not covered in full by Medicare but from memory it was about 85%. I'm definitely not trying to sell this clinic to you, but they were a great source of information when I first contacted them and may be a good starting point for you guys. Wishing you both all the very best.

[MidwifeK in reply to JimmyStart]

Really helpful contribution thank you JimmyStart. From hunting around a bit more, it seems SBRT is more commonly called SABT in Australia? If they're the same it looks like it's available here in Melbourne. Not sure yet if it's a suitable option for my husband.

[Murk]

IMO, A second biopsy opinion won't hurt, will help educate and determine your options, and solidify a plan. A going forward plan that you can visualize can sometimes have a calming effect

[David82150]

Diagnosed 2008 3+4 7. Psa6

,Had the prostate removed still 15 years later here.

[Jeff85705]

I had a similar diagnosis and chose the laparoscopic, nerve-sparing prostatectomy and am satisfied with results (2017). My decision was based on removing the source of the cancer: the prostate itself. It gave me (and gives me) peace of mind. I would recommend that your husband (first of all he should be messaging here himself) get opinions from an experienced urologic surgeon AND a radiation oncologist. Don't rely on the know-it-alls that seem to troll this site dispensing medical advice without a license, one in particular. Best wishes to your husband.

[MidwifeK in reply to Jeff85705]

Thanks Jeff for your input. It's great that you're satisfied with the results of the choice you made. We are consulting with a number of urologists and a RO, as well as using this site for additional data points and other perspectives. I am an advocate for my husband (which is why I'm here, while he consults with others and brings other data.) Patient advocay has been shown to improve outcomes by represent the voice of patients to ensure their needs and preferences are met.

[Concerned-wife]

Does he go to PeterMac? Several of those physicians including urologists seem to be well respected worldwide for prostate cancer

[MidwifeK in reply to Concerned-wife]

Thank you for your reply Concenred-wife. Yes, we're seeking a second opinion from urologist Prof Nathan Lawrentschuk this week. He operates at Peter Mac, among others, and seems to be widely respected and widely published.

[SonomaGuy]

I was diagnosed Gleason 6 Oct 30 2020 & My urologist told me basically that surgery was my ONLY option. He stated that radiation wasn't because of my age and that if the PC returned, surgery wouldn't be possible I was 55 and my psa was 5. needless to say, I freaked! So I did some massive research and found many other treatments available. Of course treatment options are based on your scores - Gleason, number of positive cores, and tumor(s) grade. Active Surveillance is a TREATMENT option - and only when I brought this up to my urologist did he reluctantly acknowledge this! So then I got multiple other opinions - a new urologist, a oncology surgeon and a radiologist - all of whom, after reviewing my scores, stated they would not recommend treatment at this time. The radiologist said he COULD if I really wanted, but didn't recommend it. There are newer treatment options like HIFU - High Frequency Ultrasound and FLA - Focal Laser Ablation, both of which target specific cancer areas of the prostate and don't destroy all the tissue, so men don’t typically have urinary incontinence or ED. The one side effect is dry orgasms - but hey, dry orgasms are better than no orgasms.

I would really recommend getting a second opinion and direct look at the biopsy tissue. you can send your biopsies to Johns Hopkins for an additional direct review of the tissue. It costs about $300 and is all done through the mail. Keep in mind this can cut both ways, as they could come back with a higher grade of cancer, same, or lower - all of which can help guide you in your treatment decision. I sent mine there and they came back confirming the gleason six score but downgraded the cancer to one core from three. Overall, it's important not to have a knee-jerk reaction to the word "cancer" and just immediately cut it out. Take your time. He needs to decide what works best for him. No offense, but HE needs to decide, not his partner, family or friends,. He is. the one who will have to live with the potentially life long devastating side effects of incontinence and ED - and the emotional toll that comes with it. Input is always good, but ultimately he'll have decide what HE can live with. Keep in mind that PC is a slow moving disease so taking a few months to research and get educated is ok.

[MidwifeK in reply to SonomaGuy]

Thanks for your thought SonomaGuy. I'm here as an advocate for my husband, not to make decisions for him. Naturally once we've gathered all the data we need to enable fully informed decision making around treatment, HE will make the decision. He's been living with PCa for 2 years already, there are no knee-jerk reactions happening here.