metasized prostate cancer

Prostate cancer becomes extremely painful in late stages. You don’t want to go there. My father died of prostate cancer and the last few weeks he Could not carry on a conversation because of the amount of medication he was on to stop the pain. When I was young, he had his teeth ground down and crowned without Novacaine and came home for dinner those night, he had a very high Pain threshold.

With a PSA of 32 Your husband probably had a Gleason Score of eight or higher, Which means his cancer is aggressive.

The least invasive treatment is to have radiation done. In the long run, it is just as successful as surgery, something published in recent studies. How old is he? If it is 70s, then it’s really a good solution.

If he doesn’t want to go on ADT because of its side effects then you should definitely consider going on the Estradiol patch. The Recent patch study showed it works exactly the same as ADT but has many fewer side effects.

With treatment, you can live many decades, Without it, you may only have a few years, his case sounds serious and prostate cancer can cause a lot of pain for years if untreated.

I have metastatic Prostate cancer, I’m 73 and doing nothing it’s not an option for me so for now ADT and in a few months radiation treatment and will see. It’s no reason to give up Medical treatments has come a long ways

Zzotte

bmjob
Getting a prostate cancer diagnosis like any other cancer diagnosis comes with anxiety and "what should I do."

What are you medical doctors suggesting as treatments. You did not mention your husbands age. That has a been impact on what your medical providers will recommend. Does he have other medical conditions again something us on MCC do not know and can have impact on treatments.

How is his mental outlook on this? Not have Decipher test you cannot post a Gleason score which would help. If the test have revealed prostate cancer and it has spread then already at a stage that is different than if it had not spread.

Please have you and your husband go to your medical providers and seek the answers you want. They have your medical history, his present physical and mental health outside prostate cancer, his age, and his own feelings on how he wants to proceed after receiving the different ways it can be treated with the pros and cons of each.

If you are not going to a center of excellence then consider getting a second opinion on diagnosis and the treatements offered at the medical center you are going to now.

Prostate cancer treatments have come a long way from a decade ago. Even now those of us on MCC are learning about new and very promising treatments for prostate cancer. Please keep a positive mind that treatments are very effective especially the new ones. I know that is hard to do with the diagnosis but prostate cancer treatments have just improved so much over the last few years.

I an 72, diagnosed with metastatic PC last August. My PSA was 62, lymph node, pelvis, and large tumor growing out the back of prostate. I had very mild symptoms such as more frequent urination at night, and some strange leg pains once and a while. My annual physical bloodwork found the very high PSA. After the first exam at the urologist, I asked the same question, what happens if I don’t do anything, he told it would take about a year or so, with worsening symptoms and then….
I went on ADT right after the biopsy, Gleason 9, as of April this year, my PSA is less than 0.1, and symptoms are gone, Plan to go have radiation in about a month, with the possibility of a cure. ADT is no fun, but it is worth it to me. My brother died at 62 from PC, he refused treatment when diagnosed and died 6 months later.

Choosing a treatment plan is something you should do with your doctor. However, I do recommend being treated by an Oncologist not a Urologist. From your description, it sounds like the cancer may be aggressive and needs treatment immediately. The standard of care for aggressive stage 4 prostate cancer now is triplet therapy. If you are healthy enough, that includes ADT, and ARSI (i.e., Abiraterone, Enzalutamide, Apalutamide, and Darolutamide), and Chemotherapy. Sometimes the oncologist might do a PSMA and clean up with Radiation after treatment. The idea is to destroy the cancer up front - trying to eliminate as much cancer mutations as possible. It is also important to get Genomic Genetic testing (blood test). This test will verify if there are any known mutations in your genetics that need to be acted on with different medications. There are many genetic markers but the common ones they look for are BRAC1 and BRAC2. Please talk to your doctors about getting this test. There are new medications that deal with BRAC1 and BRAC2.

I have met many people with prostate cancer who are scared of ADT or they are scared of chemo or radiation for various reasons. You need to at least understand that radiation and chemo kills the cancer cells by damaging the cells killing them over time. ADT and ARSI's manage the cancer by lowering your testosterone - basically starving the cancer.

My PSA was 32 when I was diagnosed with metastatic prostate cancer. I was diagnosed denovo high volume to the bone (spine, ribs, hips, femurs, etc.). I did radiation up front to the spine and hips to shrink to metastases and relieve pain which worked well. I currently take ADT, Darolutamide, Xgeva (for bones), and I did 10 chemo cycles (4-6 cycles is standard).

I chose to carpet bomb the cancer because I know that you do not necessarily have one kind of cancer cell mutation upon diagnosis - there may be many. So, I wanted to kill as many cancer cells up front without killing me, but I wanted to go beyond the standard treatment.

It has worked out for me so far. I have been in deep remission for 3 years now and my recent bone scan showed remarkable improvement. I live my life and I work every day. It is a new normal but I am thankful I am here and that my doctor was willing to be as aggressive as I wanted to be.

Aggressive treatment of prostate cancer is something you need to decide with your family and doctor. It also depends on how fit you are to be able to handle treatment. Everyone is different and everyone's cancer is different no matter the stage.

The issue will be when the cancer metastasizes to the bone, at which point the disease and the treatment becomes much more complicated (and I hear) painful.

As others have said, those of us who have peeked behind the door of death by prostate cancer (PCa) say no thanx.

The question is then, what to do.

From the clinical data you describe, your husband has advanced PCa. There are guidelines that are based on the science, which may serve as a starting point for you, your husband and medical team to discuss treatment choices. The NCCN - https://www.nccn.org/guidelines/guidelines-detail?category=1&id=1459 and AUA - https://www.auanet.org/guidelines-and-quality/guidelines/oncology-guidelines/prostate-cancer are two examples.

Understand you have joined a club, albeit not of your choice, with its own language, terms and definitions. You'll need to learn them - Gleason Score, Grade Group, PSA Doubling and Velocity Times, Genomic Testing, Decipher Tests, Androgen Deprivation Therapy, Androgen Receptor Inhibitor...to have the necessary conversations with your medical team, The time available during consults is often short, you don't want to waste it asking to explain the basic terms!

You'll need to assemble a multi-disciplinary team, urologist, radiologist, oncologist and supporting allied health specialists.

Depending on you and your husband's patient style, one of them may function as the coordinator, integrator of his treatment and care. I don't want to disappoint you but likely that coordination and integration function will default to you two, just the way medicine seems to be, they are busy people.

There are organizations with valuable resources, the Prostate Cancer Foundation is one - https://www.pcf.org/ there are others, PCRI - https://pcri.org/

There are online forums such as this one where fellow club members share their experience and layman's understanding.

Some of the treatment choices may be:

Doublet therapy - ADT + ARI
Triplet therapy - ADT + ARI + Chemotherapy
Radiation may be in play
Some say take out the mother ship, the prostate in these cases.

Obviously, discuss with your medical team.

Your husband is certainly entitled to his pity party, the diagnosis is shocking and overwhelming initially, most, if not all on this forum can describe the moment they got the news. It may be time to put that aside and figure out the way ahead.

Honestly, there are no treatment options without side effects. There are mitigating strategies, some of which you two can control, diet, exercise, managing stress, attitude. Others your medical team has solutions though you may have to ask - hot flashes is an example, erectile disfunction another!

I was diagnosed in January 2014, the 23rd to be exact. I still recall the shock of that call, the words of my urologist, "Kevin, that's a pretty aggressive cancer," and his comment to the scheduling nurse, "Kevin is "NDC" which when I asked, was part of the new language I was learning, "Newly Diagnosed Cancer!" Yep, I had my pity party, then I set about figuring things out.

Yet, 11+ years later, here I am. The treatment choices in 2014 were pretty much binary, surgery, radiation. Thanx to medical research, there are a plethora of choices today. That's the good news, the contrary to that is there is no one "right" decision, there are good choices based on clinical data - GS, GG, Decipher Test, Genomic Markers...and personal preferences.

His treatment may or may not be continuous. Given my clinical history, some say I should be on continuous history. Yet, only three of the 11+ years have been on treatment. Honestly, the only real difference on versus off has been in my life is how I feel living my life. It has not interfered with taking vacation, celebrating life's milestones, working...

Finally, keep in mind statistics. They are often historical, and population based. They may not apply to your husband's specific clinical data. Also keep in mind the Bell Curve, mean, mode, average, standard deviations...as an example, with ADT, most men lose their libido, some statistics say 80% or so. That means 20% or so don't. I was in the latter, many on this forum were in the former.

Please come back and inform thè members on this forum about your discussions with his medical team, we are always available to share our experience and understanding as patients.

Kevin

@kujhawk1978 ,
Hi Kevin, looking at your history, how was your experience on Taxotere?
Were the side effects bad? Were you able to work?

John

Usual I guess.

I lost my hair, it grew back.

Fatigue, yes. I still went to the gym, did the indoor bike, lifted weights, swam, played basketball. At times I would ride my bike outside 15-25 miles.

Some of my finger and toe nails turned black and blue.

That metallic taste, yeah. Wife would ask what I wanted in a meal. I would say politely whatever, it pretty much tastes the same.

The side effects were cumulative, fatigue hit hard on the 4th infusion. I remember because I struggled to play half court basketball instead of full court.

Still, the cycle was "normalized" infusion day plus the next two to three were "normal" given the anti-nausea drugs that were pre-infused.

Days 3-5 were a drag, the side effects were at their "peak." So, I would schedule infusions for Thursdays which usually enabled me by Monday to be "normal."

Days 7-21 were "normalized."

Then the cycle would start again.

I did work. I also travelled to Las. Vegas with my wife watch our daughter play in the Mountain West girls post season conference basketball tournament. We spent time out there visiting and hiking at Red Rock Canyon, Hoover Dam and Death Valley.

I did not experience neuropathy and after the 6th and final infusion, things returned to the way there were in 30-90 days.

My experience, albeit with a caution. I was very fit going in to it and continued working out while on treatment. That may have been a factor in my experience.

Oh yeah, when I felt the side effects, I would just take the damn nap!

Kevin

Thanks Kevin! Probably will be having a first meeting with MO in a few weeks once I get referral from urologist. Wanting to be prepared as much as possible. 🙂