What is your experience with Advanced... - Advanced Prostate...

Advanced Prostate Cancer

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What is your experience with Advanced Stage 4 Prostate Cancer with Gleason Score of 9 - all 12 segments?

acuphealing profile image
acuphealing

Have been told - this is not curable... chemo just as palliative

65 Replies

Is it advanced? Where has it metastasized to? How many metastases?

To lymph nodes groin and retro peritoneal only

Groin and retroperitoneal lymph nodes are outside of the pelvic prostate drainage area, so the cancer is considered to be systemic (stage M1a) rather than regional (stage N1). That means it's not known to be curable, but it can be managed as a disease one can live with for a very long time.

The word "palliative" may mean different things to different people. Some use it to mean anything that's not curative. Others mean that it only relieves pain. It is important to understand that we have many therapies that extend survival (and also prevent or relieve pain).

I think your first job is to find a urologic oncologist rather than the oncologist you've been working with. There is a lot that you can do with medical science before resorting to voodoo. Here are some things to discuss:

(1) Debulking the prostate. It's been found that there is still a survival benefit in treating the prostate with radiation. You can read about this discovery here:

prostatecancer.news/2018/09...

During the pandemic, many think it is a good idea to get this done in as few treatments as possible. There is a kind of external beam radiation called SBRT that only takes 5 treatments.

(2) Radiation to pelvic LNs and the two non-pelvic LNs. If there is still any benefit is unknown. I think it is worth a discussion with a radiation oncologist. If it is safe to do so (the pelvic LNs and the groin are safe and the retroperitoneal is probably safe), why not?

(3) Systemic therapy. Unfortunately, the cancer is not limited to what you can see on even the best PET scans. So you have to treat what you can't see too. That's where systemic therapies come in. There are two main categories - chemo and hormonal. Both are used together with a medicine that brings testosterone down to "castrate" levels. The first type of chemo used is Taxotere (docetaxel). The extra hormonal therapies used are Zytiga, Xtandi or Erleada.

This article explains the options:

prostatecancer.news/2017/06...

There is some controversy over starting with Taxotere. In England, it is the only approved remedy. In the US, it depends on which organization you ask. My personal opinion is it's a good idea to start with Taxotere for several reasons: (1) In men with fewer than 5 non-regional LN metastases (stage M1a), 5-year survival increased from 40% to 53% by using Taxotere instead of standard-of-care; (2) the benefit of Taxotere is much greater when used earlier; (3) the side effects are no different in degree (but different in kind) compared to Zytiga; (4) younger men have fewer side effects - waiting increases side effects; (5) Taxotere is usually given as 6 infusions, one every 3 weeks, so after 15 weeks, one can move onto the next therapy. If one starts with Zytiga, it will be about 3 years before it stops working, and by then, the genomic changes associated with castration resistance may render Taxotere less effective.

(4) Genomic tests. He should definitely have a germline test (saliva or blood). If either of the LNs are big enough to biopsy, he can also have a "somatic" test. These tests seldom find any actionable mutations, but it's worth a shot if his insurance will cover it.

(5) PSMA PET scans. This was newly approved at UCLA and UCSF, but last I heard, insurance wasn't yet covering it (check first), and it costs $3,000. I don't see how it will change any of his treatment decisions, except if there are extensive metastases, he may decide to forgo #2 (but still do #1).

tallguy2 profile image
tallguy2 in reply to Tall_Allen

An excellent synopsis Tall_Allen. No need for me to repeat a word. Great job!

Thank you so kindly for all of that- so incredibly helpful!!

Cooolone profile image
Cooolone in reply to acuphealing

TA nails it and provides a great breakdown.

I'm a recent mHSPC StgIV N0M1, Peritoneal and Appendix metastatic patient. Long story and it's all here (somewhere)... Anyways...

I'm interested to know of your diagnosis and how progression moved (stages)? Progression and how the Peritoneal spread was detected.

We are a rare breed! Peritoneal spread of PCa is rare, so there's little information to prognosticate the condition. That doesn't mean we can't exist inside the same bubble utilizing the SOC that all patients do. But with limited patient data, there really isn't much to go by as to efficacy in regard to therapies or how we will respond to them. Don't get me wrong as there are very effective treatments today as noted that can forestall progression for a long time!

Accordingly, agressive systemic therapy is what path I chose, Docetaxel as first line in this setting. Currently on my 4th infusion (of 6) and hoping that at least for a time, it provides some reaction as my PCa and PSA has been persistent despite RP and subsequent RT & ADT. My PSA has also been persistently low, and PSMA-PET scans didn't really light up well showing these lesions.

So attacking the micro cellular cancer cells that are floating around and looking for homes, and those little suckers that already have done so, is the game now! Attack early and attack hard, kitchen sink is the term, and I hope to use it all!

Best Regards!

Edit:. Just read your Bio! Definitely get to the best care that accessible to you, even if travel is required! Being in the system, you know that results are tied to expertise. Not too sure how that doctor made his assessment on OS as there just isn't data available for the condition to prognosticate it. Unless there's something else he sees that he's not sharing.

Regards!

You can read mine...G 9/10 with mets etc. Click on me and read posts of today.

acuphealing profile image
acuphealing in reply to Shooter1

Thank you Shooter1!

Welcome aboard! Great picture .. You found the best place for help.. If you are stage #4 this means all treatments are palliative.. This doesn’t mean that you can’t fight for many years. One man here has 27 years and counting. I’m at over six past my #4 dx.. God Bless .

acuphealing profile image
acuphealing in reply to Lulu700

Thank you Lulu700! This is an incredible support group!

I do not understand why Dr's tell patient's how long they have to live. There are so many men on this that are 10+ years with Stage IV.

Take it one day at a time. You are just starting on this journey.

TomTom- well said- it isn’t ethically right for a doc to define length of life- agree

I am stage IV, diagnosed last July gleason 9 with mets age 50. This is the best group of dudes I've found!

acuphealing profile image
acuphealing in reply to Marcev

Marcev- thank you- so so grateful to have found this supportive and knowledgeable group!

I’m stage 4 dx 2015 just done a 10k run before breakfast a far cry from the 2.5 years I initially expected! Personally I think oncologists tend to be very conservative in their prognosis.

acuphealing profile image
acuphealing in reply to Mick268

Mick268 - you are an inspiration

Sorry to hear that mate.

It’s a tough road. I’ve been on the same journey since2016 but tried lots of alternative therapies to help delay the end.

Plant base diet helped a lot.

I’m now using Accupunture, red light therapy, hyperbaric oxygen treatment, high dose vitamin D, specifically tailored veg juicing and intermittent fasting.

Interested in doing a prolonged fast as watching this experience:

youtu.be/wiGVsUtCZwI

Welcome your views.

acuphealing profile image
acuphealing in reply to Duke2021

Thank you Duke- you definitely have taken charge of your life! Love all the approaches you have incorporated! I am the patient (Randy’s) wife - by the way and an acupuncturist.

It is important to realize that "not curable" does not mean that extended remissions are impossible, or that treatments are not life-extending. What it means is that you can't do a single round of treatment and have the cancer disappear for good... you treat to slow it down, not to make it go away. It is something you now live with.

So "chemo as palliative" just means you still have cancer after the chemo and are not cured by it. Hormonal therapy will also delay cancer progression for a while, but the cancer learns to adapt to the hormonal changes. That fact of "not being cured" in no way defines how long you may live, because individual cancers can respond VERY differently to treatments (whether standard or alternative).

Upon diagnosis, most men who are told "you have x years to live" are being told a general range. It is not specific to you, because it is too early to see if you are a "good responder" or a "poor responder" to any of various treatments. Your mileage may vary, and MANY men can and do defy the estimates that are supposedly "typical."

acuphealing profile image
acuphealing in reply to noahware

Thank you Noah for that- excellent insight! Yes, can understand how this can be a disease to manage over time.

I am coming up on my 1 year Cancer anniversary. Gleason 10. 8 of 12 cores 100% involved, 4 cores 80% involved. My urologist had absolute no bedside manor. Moved immediately to Winship Cancer Institue.

They were amazingly kind, and refuse to predict my expiration date... Trelstar, Zytiga, Prednisone, then Proton Therapy to whole pelvic region and lymph nodes...

Have you had a bone scan yet? And mets? What was your PSA at diagnosis? So many factors go into diagnosing how aggressive your cancer is...

The best medicine is a positive attitude and a great medical team you trust, and a great support network of friends / family / online communities. Do your research. Just know that your entire job is to live the best life possible for as long as possible!

Treatment side effects can be rough... but are vastly better than the alternative!

My current medical team consists of a Medical Oncologist, Radio Oncologist, Palliative Care Doctor, Cancer Rehab Doctor (to help with sever fatigue issues), Cardiologist (have adrenal fatigue from meds causing som cardiac issues) psychologist, 3 different social workers (one from oncology team, one from palliative care team, one provided from my insurance carrier), 2 nurses (one from oncology team, one provided from my insurance carrier) and my Primary Care Doctor. I also have a chiropractor (who understands the needs of cancer patients- I do not have bone mets yet), and due to chronic sinus issues (unrelated to cancer) an Ear Nose Throat doctor. Everyone but the Chiro, ENT, and insurance carrier people are all part of the Winship Cancer Institute / Emory Hospital network so they can all share info on one system.

It gets to be overwhelming, but I found out many of my friends had silently already fought this battle alone... I found myself becoming a bit of a Prostate Cancer Evangelist. Had I not been stubborn and ignored the issue, I possibly could have caught my Cancer at least a year earlier...

To keep track of everything, I started keeping a spreadsheet of doctors, meds, results, procedures, etc... it helps to keep track of everything so it is all condensed into 1 Google doc that I can always have with me on my phone. I also keep a symptom diary so I can track everything and provide feedback to my doctors. Things that seem inconsequential to you may mean something to your care team.

You are your own advocate. Fight like your life depends on it, because it does. Make your “bucket list”, enjoy life like there is no tomorrow, and fight Cancer tooth and nail...

And - this community is here for you. You are not alone!

Trash Panda- thanks for allOf the recommendations- will start a spreadsheet- great idea- it does feel a bit overwhelming right now.. so glad I have a nursing and acupuncture background- but is different being a “caregiver” for my hubby.

Welcome to this club, nobody wants to join.

I read your bio, and sane as the others here says, nobody knows how long you will go. But you will find good information here.

acuphealing profile image
acuphealing in reply to CSHobie

Thanks CS and I am really appreciating this group!

"not curable" in prostate cancer lingo means you can still live5, 10, 15 ,20 or 25 years..On this site, you will find so many men with "incurable" PCa..who are living at above mentioned time points.

This site has tons of good information and you already know "knowledge is power".

acuphealing profile image
acuphealing in reply to LearnAll

Love hearing that LearnAll! Thank you- there is hope!

I had reached a high PSA of nearly 4000 before starting on Zytiga/Prednisone and Lupron injections. PSA came down by 1/2 every month until it became undetectable. Haven't had pain since the early months after diagnosed. Been undectable for well over a year. I was diagnosed in August 2017. Living a normal life except for tiring easily---not bad for an 80-year old man.

Thanks for that reply and you are doing great! I am Randy’s wife writing this- monitoring the replies!! Did you do juicing or complementary integrative health?

LearnAll profile image
LearnAll in reply to acuphealing

A fellow member , Magnus, who is living with metastatic PCa for last 28 years told that the first thing he did after being diagnosed was to stop all meat and became a man who only eats plant based foods. The second thing he did was to drink Japanese, Macha Green tea 2 to3 times a day every day. He stayed fine just with orchiectomy and Bicalutamide for 5 1/2 years and on various newer meds after that.

Complementary treatment has a definite role in comprehensive treatment of advanced PCa.

The PCa treatment field is progressing rapidly and we will see more effective and less toxic treatments in coming years.

Chugach profile image
Chugach in reply to LearnAll

How much do you think we really know about meat as a contributor versus saturated animal fats? Here is the deal, I’m a hunter and the meat I eat is nothing like that found in a store. No chemicals, hormones and very lean. Like carbohydrates- saturated fats are much more available now for consumption than in human evolutionary history. But lean organic wild game?

LearnAll profile image
LearnAll in reply to Chugach

Fresh meat has much less pro-inflammatory property than stale, preserved meat. Also the chemicals and preservatives along with putrefaction increases pro-inflammatory property.

Chugach profile image
Chugach in reply to LearnAll

I agree that eating excess of meat is not good under any circumstances, or excess of anything for that matter. For me it’s more than food, it’s my connection with the cycle of life on our planet. When still in Alaska there was not much choice as veggies were scarce and expensive but wild fresh salmon abundant and free.

acuphealing profile image
acuphealing in reply to Chugach

Good question- I would imagine the meat you eat is healthier. We are both plant-based and from my research- that is a good thing to help with this journey.

acuphealing profile image
acuphealing in reply to LearnAll

Thanks for that! Good to know! A bit nervous as hubby prepares to receive his 1st chemo this coming Wednesday- pray side effects are manageable...

Chugach profile image
Chugach in reply to acuphealing

Stay strong- he will do good. The first few days are tough and then you start to feel better. What chemo drug is he getting?

[I replied earlier, but I don't see it here, so I'll restate my answer to your question.]

No, I don't follow any regimen of juicing (although I do drink a lot of OJ and V8).

As to "complementary integrative health", I am unfamiliar with the term.

My treatment consists of taking two 500mg Zytiga tablets and one 5mg Prenisone tablet daily. I have lab tests taken monthly. I got a Lupron injection every three months, and I just this month (April, 2021) switch to having an injection every six months. I also have a telemedicine meeting every three months (using Zoom).

Eventually, I added Calcium with D3, Vitamin K2 to help the Calcium get to the bone rather than the arteries, and Guaifenesis to help with congestion.

My diet is ordinary. My wife is an excellent cook and makes sure I get lots of greens. We eat meat, fish, potatoes, chili, great homemade soups, etc. I also drink a lot milk and coffee.

Thanks Perlprogramme - so appreciate your sharing your story and regimine - very helpful to know! It does help that you have a wife to support you and is also a great cook - so nice! Interesting to hear about K2 - will check that! Take care!

Wow! Didn’t know the PSA can reach that level! Nice to hear how you have been doing!

I was Gleason 9 in all cores. I’m now past the 5 year mark, it has been tough at times during treatment but I’m still here and doing good, trying to live a normal life. Be sure to find a top-tier hospital to help with this and Stay Strong!!

acuphealing profile image
acuphealing in reply to Chugach

Thanks for replying. - I am the wife of the patient. Which hospital did you go to and which doc?

Chugach profile image
Chugach in reply to acuphealing

I got 5 second opinions before deciding on where to go and who to use. I ended up leaving Alaska for Colorado UC Health Anschutz/ Dr. Kessler- but my decision was based also on having family in Colorado. There certainly are more specialized hospitals - Seattle is awesome and of course Mayo, MD Anderson; You just want to be looking in the top-tier. I’d be dead if I had stayed in Alaska with the first (or second) doctors I spoke with. My case was more unique as I was 46 and it was very aggressive PC. Be sure to find a urologist, a medical oncologist and a radiation oncologist. Surgeons will often recommend surgery, Med oncologists will offer drugs - it’s what they tend to do. I kept seeking opinions until the overall recommended course of action became consistent. Stay strong!!

I was Gleason score 9, PSA 39. That was 28 years ago. I the orchectomy, later radiation, then onto Casodex, zytiga and xtandi, with Provenge and salvage radiation in between.

I too am new to this too. Diagnosed in 11/2020, age 58. Gleason 9, all cores. Very High Risk, prostatic Ductal Adenocarcinoma . Scared as heck at first, tough reality to face. But facing it together in this group is a great help!

acuphealing profile image
acuphealing in reply to DMohr011

Thanks for revealing your journey and praying for your healing, along with this group!

Howdy warriors , welcome to the group. Looks like hubby has a great caregiver and companion to help him thru this. I can’t express how important that is for him and how lucky he is to have you by his side. How good is that !!!! Don’t let doctors tell you how long you have left to live. If anything , this group proves out how unreliable those estimates really are. They give you their best conservative guess but reality is almost always different. Cheer up, hubby probably has far more time than you think.

Like the other guys here , I have a story too. Most likely I’m circling the drain a little lower than most guys here ..

But here I am never the less. Yes a little rough for wear and ruffled around the edges, but ( since I’ve been fully vaccinated) planning trips to the coast , Monterey and Moro Bay etc. and going to parks, the aquarium, zoo ...lots of QOL things on my list.

I was diagnosed very late with a psa of 1400-1600 , mets spread literally everywhere in my body, even my skull and every bone joint in my body had strong uptake. All my body chemistry shutting down and tremendous pain all over, especially my pelvis and lower spine. My first offer of medical care , by a table full of doctors, was being strongly encouraged to enter inpatient hospice immediately. No surgery, radiation or additional scans for me. I know how you are feeling right now, I’ve been there .... pretty much everyone here feels or has had exactly the same helpless feelings. I refused hospice ( wtf, not going in there ) and got lupron Xtandi Zometa instead and that was 27 months ago and I’ve been undetectable psa for 25 of those months. I feel like I might last another 27 months or more , at this point , if I can continue to tough out the adt side effects.

The point of all this, and like the other guys posting above ...

You just cannot accurately predict how long you have left. That and new and better life extending drugs and treatments are coming along all the time.

Among the many additions to your medical treatment, like exercise, diet etc. is supplements. If you ask group members , that have lasted unexpectedly long times, what their supplements are .....you can develop your own regimen for hubby. Probably each supplement. only helps a Skosh but skosh’es add up. Things like modified fruit pectin, black seed oil, saffron, circunmin, boswellia, lycopene and many others. Talk to members like tall_allen, Nal, lulu700 , magnus and many more ... the successful guys . They will tell you what they do , you can gain info from what they do. I take upwards of 20 supplements every day myself. Working the supplements makes you feel like you have an active hand in this process as well, and not a bystander.

Once again welcome, two more warriors in the HU army.

🌸🌼🦋🌻💪💪💪

acuphealing profile image
acuphealing in reply to Kaliber

Thanks Kaliber and yes- QOL is key- so many ways to boost that as we fight this ca! I have learned so much I. The last 5 days already and still learning! Can’t wait to incorporate juicing, naturopathic medicine, reiki, more acupuncture.. Wishing you well!

CSHobie profile image
CSHobie in reply to acuphealing

I spent a few days watching Youtube videos on Juicing, lol, the crazy guy from discountjuicers. Since working on Alkalising my body, and drinking juices I think I feel better. Not that I am an authority on the topic, but I enjoy it.

acuphealing profile image
acuphealing in reply to CSHobie

Thanks CS!! We have watched YouTube videos too a d bought a great book called The Juicing Bible- love it! Just invested in a very nice Omega juicer! Yes- alkalising can surely help!

CSHobie profile image
CSHobie in reply to acuphealing

Here is a very interesting talk, about our eating habits and diseases.youtu.be/DlI6DMZxgBY

Kaliber profile image
Kaliber in reply to acuphealing

❤️❤️❤️

Welcome to the club that nobody wants to join. As you can see from the responses so far to your post, there are a lot of long-term survivors, even those diagnosed with very advanced disease. However, by way of a cautionary note, you will rapidly learn that this disease is very idiosyncratic and everyone responds differently to treatment. This was recently driven home to me when a much loved member here, a physician with the resources and brains to get the best treatment possible, passed less than four years after diagnosis.

However, I think as treatments evolve, rapid downward spirals are increasingly rare. Four years ago, when I was diagnosed, my urologist described the standard of care as the “wild wild West,“ because of all the new drugs and therapies in various stages of trials. The concept of “cure” has even crept into the language of systemic prostate cancer treatment, referring to oligometastatic (low volume metastasis) disease. The jury is still out on that, but there is every reason to believe your glass is half full rather than half empty. Personally, I cringe a little when my wife tells me, usually during an argument, that I “beat prostate cancer,“ but I take pleasure in knowing that she no longer thinks of me as a dead man walking.

The concept of complementary integrated health approaches, is somewhat controversial and has sparked some of the most intense arguments you will find on this site. I think everyone here agrees that a healthy diet, weight control and exercise are beneficial, if not essential, but after that you will find little consensus. Many of us use anti-inflammatory supplements, and some use re-purposed drugs, such as Metformin and statins. Do your own research and draw your own conclusions, with my only advice being that complementary approaches should never be a substitute for conventional standard of care treatments.

Kaliber profile image
Kaliber in reply to Canoehead

Very well put ...👏👏👏

Thanks Canoehead- appreciate your candidness. It does seem very advantageous- at all times, even if it’s scary (right now) to keep a positive attitude- have Positive Affirmation taped to the bathroom mirror - so we both can reflect and say it daily...

My husband's Gleason 9 history is in my profile. He's in his seventh year, two years past his expiration date. During that time, he's done a ton of traveling, local and overseas, hiking, biking, running, motorcycling, visiting family and friends. When he couldn't/didn't do those things during radiation and chemo, we still tried to make each day "good."

Since you're a couple, consider yourself a team. You're getting great answers here, so I won't repeat what others have said. I can't comment on supplements and naturopathic approaches since it's not part of the path we've taken. But I can comment on lifestyle, specifically diet and exercise. Guys (and their partners) on Health Unlocked are or soon become pro-active health nuts. You both need to be in top shape for the road ahead, which sounds weird since your guy has high-risk cancer. But he has also has a heart, a liver, kidneys, lungs, muscles, dopamine (for mood management) too. Get them in good shape by conscious living. Don't count on prescriptions or stuff off a shelf to make you healthy.

If you and your husband are not already doing daily exercise, start a program today Walk three miles a day, and pretty soon you'll be walking more. If you bike a couple miles a day, soon you'll be biking fifteen. It's hard in the pandemic to build stamina and strength, so find some home program you can do together to inspire each other. Consider yoga and tai chi in addition to weight training, cardio exercise. Exercise will help your husband sleep better. Sleep is healing and hard to come by on some of the drugs he may be prescribed. Encourage your guy to join a Zoom support group of men with advanced PCa.

If you're not already eating a healthy diet with lots of plant-based foods to help your heart, read Michael Pollan's books on switching over to more plant-based, unprocessed foods that don't come in packages or have too much sugar and salt. You can switch over gradually. I seem to remember something called "Vegetarian (or vegan) 'til Six," ie. eat that way two out of three meals a day. Lots of men and their partners who start eating this way come off of other non-cancer meds because of healthier living. Others will chime in with other books that help you wean off meat, dairy, eggs so they are a small part of your diet or no part of your diet. It's possible you're already vegetarian. If so, good. You don't have to make drastic changes, but start to change course dietary wise if you've been eating too many non-plant foods, junk food, etc.

I'm saying this because my husband, almost 77, has withstood nine weeks of radiation, years of ADT, seven months of chemo beyond the usual six infusions because his local onc could see he "could take it." She advised our medical oncologist that he was fit for more than the standard of care chemo. He could take it because he was in shape and led a reasonably healthy lifestyle--not extreme but doable for his age.

That said, there are multiple, wonderful men on Health Unlocked who have died in the time frame your doctor gave you despite leading healthy lifestyles. Your husband may or may not have the kind of cancer that can go in any direction. This thing's a beast that is after our men. To feel more powerful, do as much as you both can to be healthy in other ways so you know you're giving your all. I wish you both all the best.

I'm including a link to the doctor referenced upthread, a young, wonderful man who died a few weeks ago. He took the time during hospice to give incredible advice and direction to everyone here--soup to nuts. We were all crying into our computers at his generosity and wisdom. His message is tough, realistic, yet hopeful. (As with breast cancer, if you can relate to that as a woman, younger people sometimes fare worse with PCa than older men due to faster cell turnover. This remarkable man was in his forties, but his advice and insights can serve everyone.)

healthunlocked.com/advanced...

Chemo is frequently prescribed for men diagnosed with mets at the outset. People on Health Unlocked can guide you through that if your husband goes that route. My husband did not have visible mets at the outset, so his chemo was in his sixth year, not his first.

The early phase you're in is overwhelming and demoralizing. It requires a lot of research and determination. People on this site can help you out. One gift of the pandemic is telemedicine. So you don't have to travel to get first and second opinions away from Phoenix.

Welcome to the family!

acuphealing profile image
acuphealing in reply to spouse21

Thank you Spouse21- so so nice to meet another spouse of the patient (I am the wife)! Thank you for your insight and yes- we are on this journey together! We will be increasing our exercise and are on a healthy plant-based diet already..but so many other things to add!!

spouse21 profile image
spouse21 in reply to acuphealing

You're off to good start since you already have a healthy lifestyle and you found this site. I responded before I read your profile and background, which will be so helpful in the days ahead, i.e. you're not starting from zero. I'm constantly amazed by the men and partners here who do start a healthier lifestyle from scratch so that they can deal with the treatments. I know you'll get a lot of help along the way. Other partners may weigh in. There's a bunch of us whose spouses/partners focus on their treatments and do other research or go to support groups.

It's helpful to accompany your guy to appointments, if possible, so you can take notes and compare them with your husband's. Covid protocols have benched me for the time being, but I'd already met my husband's various doctors and taken good notes up until the pandemic. For all I know, they're partying in there now! I just get the blood work/scan reports now, which almost always look perfect??? except for one spectacular time when everything was off the charts.

BTW, when we met our new oncologist three years ago, his very first comment ,after "Hello,"was: "Do you have your affairs in order." Whaat??? He's very knowledgeable, and since we have a hand-holding local general oncologist to carry out orders from the top, we didn't walk out the door or start oncologist shopping again. What seems to happen is that you start living day to day--a good thing--instead of focusing on end dates. All of this is almost a full-time job, so I hope at least one of you is retired. You're about to become a PCa expert.

P.S. If chemo is in the cards, many here, including me, have written previous detailed comments on the nuts and bolts of it. The guys who get chemo right out of the gate, as your husband might, are in better shape to handle it than those who get later-stage chemo after they're worn out by other treatments. My guy handled it well all the same.

rnewman100 profile image
rnewman100 in reply to spouse21

Spouse21 - thank you for your reply. Neither of us is retired. I am a nurse (Employee Whole Health Program Manager/similar to Employee Wellness Coordinator) and hubby still working retail. He may need to stop working - in the near future (will see how he does with chemo and if able to return to work)... I am asking permission to work from home part of the time (I lead sessions on self-care, yoga, meditation... for employees virtually).

Yes - taking notes like crazy - just told hubby - we need to organize all of the gazillion documents/papers that are all over our kitchen and dining room area.. I do accompany him to all appts and when he starts chemo (this Wed)- will be in the waiting area... it is good that he's starting now and not down the road.

Didn't like reading about the lack of bedside manner of that oncologist your hubby saw - we had a similar experience with a Primary Care doc my hubby saw - who was bordering on unethical conduct/very uncompassionate ... still debating whether to write a letter to the Board of Medicine here...

Thanks and please - let's be in touch - nice to have a wife "in the house" :-)

be well,

Acuphealing

spouse21 profile image
spouse21 in reply to rnewman100

There are guys who work/worked during chemo. There's a pattern to the "bad" days in the three-week cycle of infusions. We'll weigh in if/when the time comes.

I use a program called Scrivener to organize my digital information. It's something I've used in my work so probably overkill, but I can usually dig out something on the first try. I have a digital Scrivener "folder" for every doc and immediately input my written notes in bullet form after each appt. with a particular doctor.

Not to give you a job on top of a job, but some men on HU send their biopsy slides to Johns Hopkins to Jonathan Epstein, a pathologist who only reads PCa slides to get a more definitive reading. He's the premier PCa pathologist. urology.jhu.edu/jonathaneps...

We didn't do it because all my husband's biopsy cores were 100% involved at 4's and 5's--so not much ambiguity. Plus the slides were sent to the three major cancer centers we consulted, so we figured the biopsy was pretty well covered. Epstein's opinion is more useful for guys with a 4+3 Gleason or 4+4. Just passing it on.

acuphealing profile image
acuphealing in reply to spouse21

Thanks for all of that- so helpful! My hubby’s slides, I am afraid- may not be helpful- all 12 core samples Gleason 9 score- 100% of his prostate- second opinion coming from an MD Anderson/Harvard trained oncologist to evaluate scans...

There is a drug coming out for approval this year that the doctors are pretty excited about for serious cases. You should ask your doctor about LU-177

Thanks- will check it out

I was diagnosed in July 2018, age 55, Gleason 9, PSA 103, several bone and lymph node mets. It's a shock and can take a while to get used to. Life will not go back to the way it was before cancer but life is still great. I did docetaxel and remain on ADT injections every three months. This is a great group to belong to. It has been almost 3 years for me and I'm doing well. I'm looking forward to more years to come. Best of luck.

acuphealing profile image
acuphealing in reply to MarkBC

Mark- nice to hear you are doing well despite this tough journey- th is for sharing!

We were in your shoes last year when my husband Steve, (Stevana on this site) was diagnosed with Stage IV prostate cancer with all 12 biopsy cores positive for cancer, Gleason 9. His PSA was only 3.8 so it sure was a shock to find it was so aggressive. His scans showed extensive mets in bones and lymph nodes so we also were told his disease would be treated like a chronic disease and he would never be cured. He was told the average life expectancy for someone in his condition was 3-5 years. As you can see from the replies so far, everyone is unique and a statistic of one so it’s best to live a day at a time and try to enjoy each day we have. You are already a step ahead by finding this site. This site has been such a help and resource for my husband and I. I think it will help you too. Good luck and God Bless!

Greetings to another nice looking couple.... You picked the right site for help and information. Now just calm down cause your dear husband will be around for a very long time. Continue with your lives as if nothing happened and enjoy yourselves. Laugh with him and hug each other when it's appropriate. Tell your husband thing could be worse.... he could be married to Nurse Ratshit......

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 04/25/2021 6:53 PM DST

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