My husband, 60, just got an MRI report that stated aggressive metastatic prostate carcinoma >15 that spread to bladder and anus walls. We have an appointment with the urologist in 3 days. This feels so hopeless. Symptoms have been difficulty urinating mostly. PSA ranging 5-7 over the past month. IS THERE HOPE?
any hope for aggressive metastatic pr... - Advanced Prostate...
any hope for aggressive metastatic prostate cancer?
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Jojoteacher
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How many distant metastases?
I’m not sure. I’ll ask on Monday when we meet with the urologist. Why is that important please?
If there are fewer than 4 distant metastases, radiation to the prostate (debulking) may be beneficial.
prostatecancer.news/2023/02...
If there are distant metastases, triplet therapy is beneficial:
prostatecancer.news/2021/05...
There is also a randomized clinical trial that may allow him to try Pluvicto at this early stage:
clinicaltrials.gov/ct2/show...
thank you for your reply. I will ask the doctor on Monday.
I would print out ta's links and bring them with you.
Also, don't make any decisions unless and until you have gotten second opinions from a medical oncologist and from a imrt radiation oncologist and an Sbrt radiation oncologist whom you were not referred to by your urologist.
TA recommends to E-mail the link before the appointment rather than to handle over the printed copies. I agree with TA.
Good idea. Probably you should attempt both.
I think though with most docs probably neither will work.
They will not take the time either before or during the visit.
They each have a set bag of tricks that they are not about to modify to any great extent for any one patient.
There face too many economic headwinds compelling them in the other direction.
The only ones who can spare any time are those who have expectations of an expensive procedure.
you are such a godsend.
You have to keep a positive attitude and just calmly follow SOC. PSA seems low. Did they do a detailed biopsy?
Biopsy is next. Meeting with urologist on Monday. Thank you for your reply.
What is the point of a biopsy if he has distant metastases?
all I know is that the mri report said they recommend niopsy
correction: biopsy
You wrote that it is "metastatic." Why do you say that? Did he have a bone scan/CT? If not, that is the next step. If he only has cancer in the prostate and it has grown into the bladder and rectum (called "stage T4"), it may not be metastatic, only locoregional.
the mri report clearly repeated metastatic several times, as well as aggressive and the facts that it’s in the lymph nodes and bladder and rectum walls.
So there are metastases in the pelvic lymph nodes - that's stage N1. Is it in other lymph nodes beyond the pelvis? N1 is still potential curable. The details of his diagnosis matters a lot.
Not sure, TA. I was thinking it might identify unusual strain (neudocrine, small cell,...) and maybe opportunity for somatic genetic test. Not sure though....
That would be exceedingly rare. I'm not even sure it is metastatic.
in reply to Jojoteacher
You can perform a NGS to find out which mutations the cancer have, can be of significant importance in the treatment plan.
No biopsies until you get some scans and a color ultrasound.
The only reason for the biopsy is to get hospital approval to remove something from your body.
I’m sorry, what is SOC?
SOC = Standard of Care. Also, try to get a consult with centers of excellence. See rankings below: health.usnews.com/best-hosp...
Has he had a PSMA Pet scan?
not yet. First dr appt after the mri is Monday.
Other PET scans are great too. PSMA PET is the newest and most talked about right now. It only shows cancer that's PSMA-avid. Other PET types are good too. Having said that he may not have one ordered until a while after hormone therapy (likely to be prescribed) has had a chance to work, and possibly after some other early steps. Biopsy may be necessary for a couple reasons. 1) establishing a certain diagnosis to open the door (SOC and insurance, etc.) to other treatment. 2) pathology and scoring...his cancer will receive a Gleason score indicating how aggressive it is and other data.
Where are you two pusuing treatment? Most guys here recommend cancer centers of excellence rather than the community hospitals.
thanks for the informative reply. There’s so much info out there and I feel very overwhelmed but now I understand about the biopsy. I’ve been trying to talk my husband to go to cedar Sinai (#3 on COE)which is only about an hour away but he is very resistant and want something local.
How about...Do all the first steps such as biopsy, bone scan, etc with the local urologists. After a certain point they refer you out to a cancer center anyway. At the COEs, the tougher, more advanced cases get access to more resources. I drive 80 miles to Rochester MN, have been for five years. Never regretted it.
Be courageous. Take good care of yourselves. Best wishes.
Put it in context for him.
If he screws this up, he going to be wearing a diaper for the rest of his life from a procedure the urologist declares successful, with only minor leakage.
If you don't make a few plane trips to get some second opinions, you are probably doing something wrong.
When he does major work on the house he gets at least 3 quotes.
Has he even asked enough questions from other patients in support groups to learn how much his penis will get shortened by removal his prostate?
And which treatments are likely to impair or even destroy his erection response?
hi from Perth Australia . I was diagnosed with aggressive advanced pc , bone Mets and spots in the bladder and lymph nodes . PSA 94 and Gleason 9 . I’m still fighting 4 years on .!! I had chemo and radiation in the first year and currently on lucron. This kept it at bay !!
There is always hope . I enjoy everyday and smile about all have to live for
Never give up!!
Andy
there is always hope.
Sorry to hear this news about your husband and it’s great that you are his advocate. There is also a group on this forum for advocates/care givers. I don’t know what it is called but if you search or someone here can point you in that direction. The advocates on these sites are just wonderful people heroes in my mind.
Oh one other thing as mentioned above is that it is imperative to go to a center of excellence, and get an Oncologist right away.
Could you tell me how to get to the caregivers group. Can't find it.
Sorry, i have searched but can’t find it. Try chat with one of the administrators.
Prostate Cancer Caregivers.
healthunlocked.com/prostate...
I apologize for being too quiet.....
j-o-h-n <===<<< Senior management is about to spike my spikes....
Good Luck, Good Health and Good Humor.
j-o-h-n Saturday 04/22/2023 5:26 PM DST
😂
Thanks!
I got radiation to prostate and bladder wall and it helped.
Just wanted to reiterate what others have said- we stopped seeing the urologist for my husband's cancer once we found out he had cancer. We made appointments with oncologists (medical oncologists (MO) and radiation oncologists (RO)) who specialize in prostate cancer at 3 different centers of excellence. You can see my husband's (and other's here. It helps everyone answer questions you have if you fill it out) diagnosis and treatment details if you click my name (or the little profile picture). We did see a urologist at the cancer center once for my husband to have a re-TURP. But other than that, we see the MO regularly. He guides all treatment for my husband with a 'team' at the cancer center.
I was diagnosed with Stage 4, Gleason 9 cancer that had spread to lymph nodes and throughout my skeleton back in 2014. You can read my profile to see what treatments I’ve had. Be sure to get with a good MO who specializes in prostate cancer even if that means travel, it can be life saving. You’re wasting time with a urologist right now, time to see an oncologist. Meantime get on standard of care treatments to slow the spread (the urologist can prescribe these). Do your research and learn all you can. And don’t forget the power of prayer, God truly works miracles.
Ed
I am sorry you are dealing with this, but yes there is hope! My husband was 52 at time of diagnosis with very aggressive disease. That was over 5 years ago, and he is still running his companies full time, traveling, and enjoying our kids and grandkids. He has to deal with treatments and appointments, but once we found our team of specialists, the crushing worry has lessened.
My suggestion to you is to find a team at a reputable cancer center. Our team originally had a urologist (who found the cancer), radiation oncologist, medical oncologist, and integrative health doctor. We also got second opinions, which also can be done remotely. We’ve seen docs at Cleveland Clinic, Mayo, MD Anderson, and virtual consults with Duke and Sloan Kettering. This was over the course of the 5 years - not all at once!
Since my husband’s diagnosis there have been many new options including combinations and sequence timing. Our docs have moved aggressively and consulted each other many times, and we actually ended up seeing some of the doctors through referrals from earlier ones. Our core team remains intact though and they take the lead….the medical oncologist is the head of that team.
Due to the many variances in each patient, including age, overall health, cancer features, genetics, and more, it is imperative that you work with a well informed oncologist to make your decisions. Many well meaning people will offer advice which may not be pertinent to your husband’s cancer. Feel free to pm me anytime….I understand how you’re feeling.
In the short term, take it one step at a time and write down questions to take to your doctor. I found keeping a notebook was helpful because the doctors often actually wrote things in them for us. It’s gotten rather large!
For encouragement, my hubs honestly is doing well. We are getting ready to go to brunch now with 2 other couples, and will be leaving for Miami next week. He is on treatment, but offsets the fatigue (his main side effect) with daily walks. He also works out with weights 3-4 times a week-something he never did in his younger years!
Hang in there and let us know if you need anything!
thank you from the bottom of my heart for your reply. It really helped.
Take home message is that you need a team. MO, RO, urologist etc. And a cancer Centre of excellence. You could ask for recommendations here if you say where do you live.
You might want to cut and paste his MRI report since there appears to be some confusion as to where evidence of the cancer resides. You will get more good feedback enabling you to ask good questions from your physicians .
Of course there's hope. Get the best information you can get; if your doctors aren't answering your questions, find other doctors.
I'm sorry to hear of your husbands diagnosis... the first few months can be difficult while you sort things out. You might want to add a Medical Oncologist to your team (MO) as well. There is always hope 🙏
First and foremost, you should be selecting a quality oncologist not going to a urologist.
Always.
Get him a good Medical Oncologist..............
j-o-h-n <===<<< Senior management is about to spike my spikes....
Good Luck, Good Health and Good Humor.
j-o-h-n Saturday 04/22/2023 5:24 PM DST
Your reply is very encouraging to me. Thank you for taking the time to reply.
In prostate cancer we have for some time a HSPC phase and that is when we are in remission. This first phase can last some time.
The second phase of the disease is called CRPC phase. The second phase is the most demanding.
I wish you luck and that your HSPC phase last long. I am still in the first phase after 5 years.
I recently joined this group, & based on reading many postings, my more natural approach is unlikely to be welcomed. However ...
First, this may or may not allay your fears, but at age 75, my 2 most recent PSA results are each about 50, & has been > 9 for more than 10 years. Latest scan shows likely metastatic involvement. However, at this point, I do not have any pain, nor symptoms, other than nighttime wakening for urinating; those frequencies have reduced recently. Other than occasional urgency, no problems urinating during the day.
I have only treated PCa holistically, and have become even more aggressive the past 6 months, & would suggest you ask your urologist, although be prepared for negative feedback, about Rapamycin used in a very small dose, about once every 1-2 weeks. It is FDA approved since 1999 for organ transplants, & more recently used for healthspan, mostly by reducing both cardiovascular incidents & cancers.
Another approach I am employing, but suggest you investigate rather than ask urologist, is the most common treatment for cancer in Europe: Mistletoe.
Other than 2 above approaches, I take dozens of supplements, I once asked ChatGPT for the 30 most common vitamins / supplements recommended by holistic MDs for prostate cancer patients. I agreed with that list, & take many of them.
One supplement I've increased dramatically recently, based on some research an independent researcher did for me, is artemesinin. That has several decade history as use for malaria, so human safety is well established. But it also has good studies, & logic in use for cancers.
Good luck.
Most important is that it is makes you happy that you are doing something beneficial for yourself. We all hope that your success will continue. Keep us posted.
Rejecting SOC when your scans show that you’ve gone metastatic isn’t “doing something beneficial for yourself.”
But you are psychologically more stable.
We don't really know his situation as he didn't fill out his profile. He may be just doing old school and waiting untill extensive bone pain develops and than he will start ADT if he is comfortable with it.
I was waiting untill my sciatica pain forced me to beg for Degarelix and than jumped straight to early chemotherapy and before that I received 4 X GA68 psma pet scan wort of radiation every 2 weeks from the day of first firmagin injection.
Everything depends how long your cancer stays HSPC. If it stays 5 years long like mine cancer than it is good.
I’m confused. He’s done holistic treatments only, for 9 years, and has now gone metastatic. I’d say holding off on ADT was not a good decision, especially if it was HSPC.
He’s essentially allowed the cancer to grow and spread. I’ll never see that as a good thing.
I don't know what he is doing. I am just saying what I did and what is possible. It would be great if we could find out more information.
Im not sure which is a better way to go? And I will not judge what people choose to do for themselves.
I do see that many in here become immersed in treatments and high stress about numbers and choices for treatments. For years. And years.. the stress can wreak havoc on physical health
While Mike 2023 chose a different path? Which is better?
My dad had a RP in 2007 .. then some radiation.. doctor watched him for 2 years then nothing at all.
My dad lived well…. at 83 in late 2021 almost 15 years later, he was diagnosed with advanced metastatic .. PSA 5000, poor prognosis, had spine surgery, was told he’d never walk again .. walked after 2 months, stairs, gardened last summer and this summer, still walking.. placed on abira + 5 mg prednisone, in FEB 2022, and ELIGARD every 6 months… his PSA is still dropping he’s at 0.046. 19 months later.
All doctors say he is remarkable.
All numbers are good , hemoglobin, liver, kidney, potassium, testosterone,
He eats a whole foods diet 40% raw, lots of broccoli sprouts. CRUCIFEROUS veggies, greens, salmon, sardines, some chicken, nuts, some pomegranate juice ,
Some supplements high dose Curcumin, garlic, vitamin D, c60(more potent than Vit C), ionic calcium… THC and CBD
He sleeps well, prays,
Could you please fill out your profile?
I started my profile, but clearly form is set-up for allopathic treatments. For instance, my "treatment" consists of supplements, which I've taken for more than 50 years. But let me proffer some info: diagnosed May, 2012 by (holistic) prostate specialist.
PSA > 9 for > 10 years; recent 2 numbers about 50. (Many in holistic community consider PSA neither cancer nor prostate specific -- yet I continue to view. I also calculate my doubling time.)
I exercise daily; height 6 '; weight 195; bald since age 20 -- likely that & PCa related to both testosterone & esp DHT levels. Grip strength -- 75 / 85 left / right -- although I write with left hand, but mostly right-handed. I have not used an alarm clock for more than 50 years, yet am up each morning at 3 am, as I follow the financial markets, & trade actively, although far less than 5-10 years prior. Dinner about 4 pm; bed by 6_30. (My wife is still part-time RN, & often also awake at 3 am. And my dog gets his first of 5 small meals at that time as well.)
I have only treated holistically,, which means NO biopsy, no radiation, no chemo -- and I will never do any of those. Other than some possible genetics, I suspect my major health error, which promoted if not caused my PCa was daily HgH injections, between 1 - 2 i.u. daily from about my age 45 to 74, along with high DHEA, about 200 - 400 mg daily. I have stopped both those about 6 months ago.
There are more than 200 natural vitamins / supplements / herbs, that may be considered anti-cancer. And probably at least 50 protocols. IMO, my most impt items currently:
Organic Paleo diet - and only drink reverse osmosis. water (rarely discussed on these & similar venues, but chlorine, etc. in water supply support if not cause cancers.) For that matter, diet rarely discussed, but much evidence that keto diet best as anti-cancer (one of reasons I take Rapamycin below.)
Rapamycin (Sirolimus
- equivalent of 21 mg about every10 days; recent peak blood level 2 hours after dosing was 74. In few weeks we will be starting our 5 year-old dog on Rapa as well. Evidence it increases both health & longevity for dogs too.
senolytics (Fisetin + quercetin 2000 / 1000 mg, daily for 2-3 days, every 1-2 weeks
Mistletoe - 3 SC injections weekly;
Melatonin - 150 - 200 mg nightly (I take for health, not sleep: probably best anti-oxidant
artemisinin, 1000 - 2000 mg daily; seems to kill cancer, esp metastatic via ferropotosis;
Many vitamins, incl 10,000 i.u. vit D daily (I keep my blood level about 100 iodine (50 mg daily ashwaghanda; rhodiola; cod liver oil;
Equol (18 mg daily; probably reason Japanese have much lower incidence of all cancers vs U.S.);
regular infra-red sauna; PEMF; ozone therapy (rectal insufflation Tennant Bio-Modulator;
I think THC / CBD also makes sense for general health, & certainly anti-cancer. HOWEVER, a year ago I moved to GA, which have the toughest laws in nation, so that the max amount of THC (& other ingredients) are so low, that even legal THC is not much use.
I probably omitted some items above, but I think the more impt elements are included. I elaborated for those whom may want to investigate more alternatives. The "control" group of allpothic meds, radiation, chemo, etc., do not have a stellar record.
How do you know that you are metastatic? Probably you are if your PSA is above 12.
Lot of people can have a metastatic prostate cancer even with PSA 4 only.
Would you be able to do any scan?
MRI, CT, FDG Pet scan or the best would be 68 GA PSMA PET scan.
You don't have to hurry until you feel no simptoma.
I just recently had SBRT with MRI guided Linac 38 Gy 5 fractions with the Swedish machine Electa Unity. The precision is high. 1mm are the margins. I don't have side effects. This radiation of my prostate may not extend my life but I hope to avoid lots of problems like local spread to my rectum, bladder etc.
I suggest that you also radiate your prostate if you have urinary problems. My life improved as I can sleep longer and better now without waking up to often during the night. The pest would be to have a psma pet scan to see what is your diagnosis. After that we could see if you are curable and what is the best cause of action.
I would recommend to contact either Sartor or Tanya Dorff at City of Hope in California. Tanya is known to be extremely helpful. I don't believe that you could find someone nicer than her.
Please talk to them. I am not a doctor.
Thanks, but I will NEVER do radiation. I had a scan which noted metastatic. My getting up to urinate during the night has dropped generally, & to 1 or zero on day of, or following Rapa and/or senolytics.
We know all men/women will get prostate/breast cancer if they live long enough. However, in almost all cases, will die with the cancers, not because of them.
However, as I noted above, I've added number of supplements & protocols that I have confidence will stop / reverse not only my prostate issues, but generally improve health, & esp reduce inflammation.
Someone who was only on doxycycline and vitamin C:
healthunlocked.com/advanced...
The end of this post was:ITCandy
4 years ago
Roland replied to a few of us through PM that his baking soda remedy had failed and his psa tripled over a short period of time.
I don't know if he is still active in the forum. Too bad, I really enjoyed his posts.
Report
Roland632017 profile imageRoland632017
4 years ago
Hi ITCandy and Myriammole, my name is David, I am Roland’s son in law. Roland sadly lost his battle with cancer and died on the 11th of March. I have been helping my MIL sort things out and saw these messages. I thought I should let people know.
Some information to you about hyperthermia treatment useful for cancer and FDA approved:
You could also consider hyperthermia. It is FDA approved.
The link you provided goes to an article about stage II and III breast cancer hyperthermia treatment.
More info for you:
Been familiar with hyperthermia for years. As well as at least 10-20 other protocols. Familiar with IPT? FLA (focal laser ablation?) Sorry, but I was not looking for suggestions. Even before my first visit with Robert Atkins, MD, NYC, more than 50 years ago, I've been holistic.
There are some surgeons who believe that that's the cure for everything.
there are some chiropractor, she believes everything stems from the backbone.
there are some doctors who prescribe a pill for just about everything
and there's some natural paths who only recommend natural methods.
But all of them are likely to send you to an orthopedist if you break your leg or to have an infection, checked for an antibiotic.
Ask questions of all of your team. Ask them for the numbers of people who have done a particular treatment, and the person that has gotten better ask all of the people that you see for proof on any treatment they offer.
You have the right to handle this any way you want. There are many people here who are afraid of the choices that you've made, and may react pretty strongly. I wish the best of luck for you.
There is ALWAYS hope. My father is 87 with same diagnosis. He was diagnosed 16 years ago and STILL lives a full life. Treatments have changed many times, currently he is on the SPLASH trial. He also uses THC/CBD gummy's to increase his appetite and relive pain ..without ever feeling "high". He is active, travels, and has a JOB! And, goes through bouts of nausea and vomiting almost daily for about 15 minutes...then it subsides and he moves on.
There is always hope. Always something to look forward to, and please stay optimistic.
Sent with love.
Dawn
Dear Jojoteacher: There is absolutely hope. My Husband was diagnosed 4 years ago in May. His cancer was metastatic at diagnosis. He has had 2 types of chemotherapy. 2 types of hormone therapy. And Radiation.
He’s doing well today. Dealing with this disease, (in many cases) is a marathon, not a sprint.
Hug your husband tight. Know that we are all here for information and encouragement when you need it.
thank you for the encouraging reply. That’s exactly what I need to hear.
in reply to Jojoteacher
I am 3.5 years on this journey with aggressive disease, G5, intraductal, PNI. Today I am on BAT, PSA 3. Have skipped chemo. Planning ahead with checkpoint inhibitor and tandem ac225/lu177. I am doing research on the web, should be possible to stretch this journey still a long time. Initially my biopsy was checked for mutations - a NGS procedure. Knowing your mutations have been of great help. In two weeks time a liquid biopsy will be performed, I will then know which mutations I now have to deal with.
Yes, there is always a hope. You need to start the treatment as early as possible. The prostate cancer responds very well to treatment during initial phase. So hope for the best.
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