Some advice please.

[arizonablue]

My younger brother who lives in New Zealand has unfortunately joined the club that no one wants to be a member of. Today he saw his specialist regarding his biopsy results. My brother already ready knew that the pathology came back in two cores that showed the presence of cancer. His Gleason from pathology came back at a 3-3 six. After seeing the specialist today he is being advised to get surgery, I have just found this out from my brother who seems totally distraught. I had already told him that a Gleason 6 should be as an active surveillance path, whereby they would watch him over a period of time and keep checking his psa on a regular basis. For the life of me I did not expect his specialist would advise him to get surgery, so as he tries to sleep I told him I would try and get some advice from our friends here who are more knowledgeable than I am. So long story short do you think surgery is the right option, or are you like me and think active surveillance should be the way to go. Thank you so much. James

[LowT]

What is his PSA?

Has he had a prostate MRI?

Results?

[LowT]

What is his age?

Other health issues?

[arizonablue in reply to LowT]

He is 67 and 22 years ago he had colon cancer which was cured or never came back after his surgery. Recent years he has been in good health having regular colonoscopies every 5 years which have not show anything suspicious.

[BarronS]

Cut the entire prostate out and get rid of the cancer. You have no idea what the future of healthcare will be like in New Zealand. Your brother can't predict if his finances will always be in order to get surgery for it. Or if you get a boneheaded doctor and he misses it.

Then you just have cancer in your body, hoping that it doesn't spread. If it does spread or get worse, he then has the great future of being surgically or chemically castrated and hoping each subsequent therapy works for a time. Basically a complete nightmare and living hell for everyone involved.

This may be absolutely terrible advice, but It's what I would do and what I would tell my dad to do if we could rewind the clock.

[LowT]

Stop

Step back

Breathe

MRI results

Other health issues than remote colon cancer?

[arizonablue in reply to LowT]

None that he has ever told me about me about. Thanks for you help

[pjoshea13]

Why does his specialist want to do surgery on a GS=3+3? Perhaps he should get a 2nd opinion?

There are tests like the 4KScore which give the probability of serious cancer in such cases as these. IMO, active surveillance is not appropriate for the 25-30% of GS 6 cases with high probability of serious PCa, but absolutely the correct choice for the majority of Gleason 6 cases.

-Patrick

[arizonablue]

Hi Patrick, even I am not sure what the 4K score is all about, could you give me some information on what test this is, also I wonder if he is able to get this in New Zealand

[LowT]

He needs an MRI

[cesanon]

Get some more diagnosis including a 3t MRI and a pet scan.

Get multiple second opinions from non-surgeons: a medical oncologist and a radiation oncologist.

Get an opinion on using sbri cyberknife therapy.

[DarkEnergy]

Hi arizonablue,

Well, you’ll get plenty of opinions here, great forum. But, first get some “facts” in order, for instance here in US, Gleason Score (GS) 6 is not considered cancerous, GS 7, 8, 9 and 10 are. Your brother is in the curable stage - has time to understand the prognosis and potential treatments if necessary.

So, IMO - Active Surveillance is appropriate, because GS 6 is not risk for metastasis. However, some of us will eventually get GS+, once metastatic, then no cure…

verywellhealth.com/is-gleas...

Although, based on my personal experience, was initially diagnosed with GS 6, then 5 years later GS 8 aggressive prostate cancer, but this is me - we’re all unique, here’s some things to consider:

Physicians:

1- Usually we’re initially diagnosed from a Urologist, performs digital rectal exam (DRE), performs prostate biopsy and runs PSA test. If a Urologist Surgeon, will most likely (always?) recommend surgery, Radical Prostatectomy (RP).

2- The Radiation Oncologist is pretty much out of scope for your brother. These specialist are usually brought in after metastasis and treat tumors. But, these docs have an alternative to RP, called brachytherapy boost (BT), no surgery needed.

medpagetoday.com/hematology...

3- Now, my favorite, Medical Oncologist (MO) that is Prostate Cancer specialized. Very important to have this specialization, these docs understands the cancer, they’re knowledgeable about the full-spectrum of treatments and the immense importance of images like CT scan and MRI, which are appropriate for your brother at this stage. Just an added note, these images are usually deemed unnecessary for GS 6 or localized prostate cancer. But, the best docs knows better…

In my very strong honest opinion, your brother needs to get one onboard ASAP. The MO will guide the active surveillance, knows all the latest prostate cancer research and treatments. Make sure the MO is active and associated with a medical institution of cancer excellence.

The Patient:

Responsible for making sure the best care is daily and on the horizon. The more informed, the better respect and care from physicians. Your brother is in the curable zone, work hard to stay there!

[arizonablue in reply to DarkEnergy]

Thank you so much for all give excellent advice DE, hit the nail right on the head for me. When he wakes up later I will pass on all the advice I have read today. Thank you and thank everyone who replied

[Tall_Allen]

Please assure him that his kind of prostate cancer is very slow growing and he has plenty of time to make a rational well-considered decision. He should not be making any treatment decisions until his emotional temperature comes down. He can take a year to do his homework and meet with a variety of therapists. It is always the patient's first reaction to "just cut it out" and urologists often recommend surgery. He would put more time into buying a car than he has into making this life-changing treatment decision. Active surveillance also entails a confirmation biopsy and other biopsies as warranted.

[arizonablue]

Thanks TA, he will be calling me very soon and your advice is spot on, cheers matey.

James

[babychi]

Hi we’re in Australia. Surgery is never a good idea for PCa. Especially if he’s a G6. We saw a Urologist who gave us crappy, silly advice but we researched and found that our local cancer centre had a great Medical oncologist who provided options including EBRT and ADT. We are G9 no metastasis. Seek a MRI then a MRI guided biopsy then perhaps a PSMA PET scan. They cost around $1200 for both scans in Oz. You cannot be sure about his Gleason score if a MRI 3T biopsy has not been completed. If he is truly G6 then whole food plant based diet, no meat, no booze, eating organic might result in no need for further treatment. Surgery can spread cancer. There are side effects from all treatments but ED and in continence are experienced by many men after surgery. My guy didn’t want to wear a nappy. Or suffer penis reduction. Research research, research and tell him to do some too. 💕

[arizonablue in reply to babychi]

Thank you for your reply, may I ask you where in Australia are you living? My brother lives in Wellington NZ and it may be a good idea for him to travel to Oz and pay for these scans. I suppose I need to find out for him if there are any Centers for Excellence in cancer treatment in NZ. and if not maybe Australia. He is on the public health system and will be very restricted because of that. So if he wants do these more effective scans he will have to pay for them privately. Thank you

[ggid in reply to babychi]

If they have PSMA-based PET scans available in Australia for about $1200, do they also have PSMA-based Lu-177 Treatments available? If so, where and what cost, please?

Apparently Germany has been doing the PSMA-based Treatments in over 30 medical clinics for up to 10 years, but the FDA in the USA has not yet approved the procedure. One wonders why!

It appears to me that this Prostate Cancer cell-specific treatment should be the treatment of choice everywhere in the world. Are there known serious side effects, or Risk Factors, or cases where some Prostate Cancer Cells are not PSMA-responsive?

One person went to the Foris Medical Research Institute in New Delhi, India for his Lu-177 infusion, where the infusion fluid apparently is flown in from Germany, and the costs are about 50% less than in Europe.

Where else are these prostate cancer cell-"disrupting" Treatments available?

[babychi in reply to ggid]

Hi. Peter Mac Cancer Centre may be able to assist you. Wishing you perfect outcomes.petermac.org/news/new-radio...

[babychi]

Hi again. We live in NSW central coast. We attend Gosford Cancer Centre. Our Oncologist is based at Royal North Shore hospital in Sydney. He attends our area weekly. Both scans were done at a private radiologist as Aust. did not cover either for PCa in May 2017 when we were diagnosed.

It is so important to know what Gleeson cancer score your brother is. Also the MRI designates a PIRADS rating which indicates the pattern/aggression of his cancer. I rang our cancer centre and spoke to the triage nurse there. It helped that I was a volunteer at the associated hospital attached to the centre. There are excellent facilities in Melbourne at Peter Mac and here in Sydney at Chris O’Brien Lifehouse in Camperdown and our centre at Central coast.You may find that Auckland has a facility with specialist teams to help your brother. The trick is finding a well connected and knowledgeable Medico. Urologists wanna do surgery! Radiologists wanna do radiology. You need a balanced team to help him. But surgery is something I wouldn’t put any man through. The effects are non reversible. My buddy has tolerated radiation and ADT very well. We travel 4-6 times a year to Asia and he has not ceased doing anything. He exercises daily, we eat organic and no red meat. He’s given up alcohol and has small amounts of honey, fresh fruit, organic eggs, etc. We eat out a lot when we are away. Cancer is manageable for most PCa patients.

Pls keep in touch if I can help I am happy to do what I can. I’m off to Bali for 5 weeks next week. I also follow Prostate cancer Non surgical on Facebook. It’s run by a lady (Kimberley Ann) with a G6 husband. She is a legend and has huge knowledge of diet and knows misinformation when she hears it. Good outcomes to your brother!

[arizonablue in reply to babychi]

You are a star, thank you so much for this valuable information regarding cancer facilities in SE Australia. I will speak to my brother about the Auckland facilities, if that doesn't provide the answer, he could along with his wife spend some time in Sydney where their daughter lives and take advantage of the medical facilities there. Enjoy Bali

[babychi]

Thank you for your kind comment. I’m not a medical person. I love my buddy very much. He is my closest friend. He’s happy for me to research and help him make smart choices. It’s such a awful disease but we are not letting it define us. Like many, we are living with it. He is 73. If your brother is truly a G6 he has lots of time to research. We had to decide rather quickly as his cancer had spread locally. We had a friend in medicine who told me the implications of metastatic prostate cancer. We took the best shot and so far, so good!

I believe attitude is SO important. And clean diet and exercise. No processed food. Our good health is so much up to us, mentally and physically.💕

[arizonablue in reply to babychi]

Your buddy is the same age as I am, I was diagnosed in 2006 with a Gleason 9 downgraded after surgery to a 3-4 =7. Been on ADT now since 2008 and thankfully its still effective. Thank you again for all your help and all the very best to your buddy.

[babychi in reply to arizonablue]

You’re so welcome! And thank you for warm wishes. I didn’t realise you were also living with PCa.

You must know and understand so much already. Your brother is fortunate to have you. Great outcomes for all of us!💕

[j-o-h-n]

It's a slow growing disease so your bro has time to learn and make decisions. He MUST get a medial oncologists that specializes in Prostate Cancer. Tell him to make a list of questions when he visits his MO and make sure he brings along someone who can act as a backup to his questions and as a scribe to document the MO's answers.

Tell him to live and to laugh...

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 07/26/2019 6:56 PM DST

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

Thank you John