New and looking for info to help communicate with medical team

@webs4298 I agree with the Decipher test. I have attached a word doc of sources I have collected with summaries of issues and solutions that may help your husband.

see above comment

Hey Wife, Don’t get flustered by medical mumbo-jumbo! What you have described is pretty simple: it is a more aggressive, highly dense form of prostate cancer. It’s there and must be dealt with.
Surgeons will recommend surgery, radiologists - radiation therapy if some kind( there are many!). As others have said, hubby needs a Decipher score (gotten from biopsy) which will tell you how aggressive (if its the metastatic kind) it is, and a PSMA PET scan to see if there has been any spread.
Once you have all this info you can get consults and proceed with the treatment that makes the most sense to you and your husband. No matter which you choose, the outcomes (successes and failures) are about equal. Your husband may also require hormone therapy (ADT) to slow down and weaken his cancer before/during/after treatment.
I am not an expert but don’t think that things like HIFU, TULSA PRO and other focal therapies (which claim to be less invasive) are an option for treatment due to the widespread disease inside the gland. Also, be certain your care team is the A-Team! No small rinky dink hospitals or DRs who are not experts in their field. Large university hospitals and centers of excellence like -Mayo, Sloan, Cleveland, Anderson, etc are where you want to go.
Of course, this forum is an invaluable place to get any information you might need - especially in understanding all the technical stuff. Just post a question about whatever topic you like and you will receive a barrage of comments, advice and support from men who’ve been there and done that!
Best
Phil

1 - Dr Walsh's book Surviving Prostate Cancer (as has been suggested) is well written easy to understand and comprehensive.
2 - Patient Guide free from the Prostate Cancer Foundation pcf.org by download or hard copy.
Best wishes

Good morning. I wanted to add my experience and suggestions as I was diagnosed with G8 at age 68 3 years ago.

G8-10 are considered high grade, aggressive cancers. Men with G6 and some G7 cancers have many months (or longer) to research and make decisions about treatment options. Although your husband's cancer treatment is not an emergency, you should proceed as quickly as possible and decide on a treatment option. I am not suggesting you need to do something in the next few weeks but just move the process along.

In my opinion, it is critical to have a consultation with not only a urologist but a Radiation Oncologist as well. Your husband really has 2 options: surgery (radical prostatectomy or RP) or radiation therapy treatment. You may also want to seek the opinion of a medical oncologist but need to pick one that specializes in genitourinary oncology (kidneys, bladder and prostate). The field of prostate cancer is evolving so rapidly that it is very difficult for a general oncologist to keep up with treatment of all types of cancers.

From my extensive discussions and research about treatment options for G8, radiation and surgery have about equal long term survival rates. You will hear/read people advocating for one or the other; usually people that have had that particular treatment and therefore believe it is best, or those that have had side effects or complications and wish that had had an alternative treatment. Individual stories are of no benefit to you or your husband. It is the large numbers and clinical trials that should guide you.

Your doctors may want your husband to have a PSMA PET scan. This is a relatively new test that has the best chance of identifying any spread outside the prostate. There are different treatment options if: 1) the cancer is confined to the prostate (surgery is a good option), 2) if the cancer has spread outside the prostate but remains localized within the pelvis, 3) if the cancer has spread/metastasized outside the pelvis (usually to bones or lymph nodes). If the cancer has spread outside the pelvis it further divided onto high volume disease and oligo metastatic disease. Most progressive, knowledgeable medical oncologists treat these two differently.

Seek second opinions. Start making the appointments now because it may take weeks/months for him to be seen in a busy practice. Go to a Center of Excellence, even if it means you need to travel. I travelled from Georgia to Johns Hopkins in Baltimore and it may have saved my life. Your husband needs treatment by an expert with both cutting edge knowledge and experience.

Surgery has side effects. It can result in incontinence (usually, but not always, temporary) and erectile dysfunction. These side effects depend on age, extent of disease, skill of the surgeon and your husband's presurgical condition. Radiation also has side effects; some are more acute but some are delayed. The Radiation Oncologist can explain these in detail.

Be careful what you read. Much is out of date. The survival from even aggressive prostate cancer has changed significantly with a myriad of treatment options over the past couple of years. More are on the way.

Good luck to both of you.

I certainly agree regarding the dating of information. I try limit my reading to journal articles, symposia presentations, etc. that are perhaps a year, or maybe two years old. This is not to say the there isn't useful older information out there. But, I figure most of it has been superseded by or incorporated into more recent writings/presentations.

@webs4298, I thought I would jump in with links to a few helpful discussion related to your questions.

There sure is a steep learning curve when thrown into the world of a new diagnosis. While you've traveled your own cancer journey and likely learned a lot then, prostate cancer comes with its own set of acronyms. The guys here collected many of the terms frequently used into this glossary. Be sure to let me know if there any you've recently encountered that should be added.

- Prostate cancer-related abbreviations: What acronym would you add https://connect.mayoclinic.org/discussion/prostate-cancer-related-abbreviations-what-acronym-would-you-add/

Luckily, there are different treatment options available for prostate cancer. Sometimes 2 or more options may be available that are equally effective. Then choosing the treatment becomes a shared decision between the patient (and caregiver) and their provider. Knowing that I can see why you want to become as informed as possible.

How did the appointment go with the urologist? What treatment plan or options were recommended?

An excellent website with a tremendous amount of useful, easy to digest material is pcri.org. There are short videos by a medical oncologist who specialized his entire career on prostate cancer. They are extremely well done and will give you the necessary education you're looking for. Check it out. See if it meets your needs. It was invaluable to me in my journey. http://www.pcri.org

It's overwhelming, first the diagnosis, then the new language....

It will take homework on your part to "learn" that language.

There are web-based resources, this forum is one. https://connect.mayoclinic.org/member/00-70b24cace74f41d4398605/ mentioned PCRI, an excellent source for "laymen" on the subject.

I would start with the basics, understanding the staging system - https://www.cancer.org/cancer/types/prostate-cancer/detection-diagnosis-staging/staging.html

Knowing that, you may have a grasp of the terms and their definitions.

Next, get a baseline understanding of treatment options - https://www.pcf.org/about-prostate-cancer/prostate-cancer-treatment/choosing-treatment-option/

Having an understanding of the staging system, terms and definitions and the basic of treatment options, may help you then understand the plethora of choices. I try and keep in mind that there is generally no "right" decision, only the best decision based on the clinical data and each of us and our preferences, tolerances... My oncologist and I disagreed on treatment choices during my last go round, he was not wrong in what he recommended, nor was I in what I advocated for, who was right, time will tell! This is an insidious and very heterogenous cancer, mine is not his and the data that emerges from clinical trials into mainstream practice is population based and historical, may not work for your husband!

Another thought is perhaps not get mired in the "long term..." I found it helpful keeping the focus in the three-to-five-year window narrows the plethora of choices which can lead to paralysis by analysis. If the treatment decision keeps the cancer under control for that time, medical research will bring about new understandings and new treatments which may kick the can down the road.

It may be possible with treatment to live with this as a chronic disease, managed through treatment and lifestyle - diet, exercise, managing stress, proactive medical visits and screenings with doctors - cardiovascular, primary care managers....

Finally, don't hesitate to come back to this forum after the consults and ask for input from the members on your discussions with his medical team.

As other have said, you want to consider a multi-disciplinary team, urologist, oncologist and radiologist, all with experience and expertise in prostate cancer.

There is data that speaks to the 5-, 10- and 15-year longevity with PCA, I am at 10+ with high-risk GS 8, GG4, 18 months to BCR, rapid PSADTs and PSAVs. Yet, here I am! I have packed a lot of living into those years.

Kevin