My Dad (77) diagnosed in January w/ stage 4 PC, mets to L5 spine. PET scan showed no other spots elsewhere. PSA was 19 at time of diagnosis, Gleason 10. BRCA negative. PSA is now at 0.2 since starting hormone therapy.
Feeling good, no pain. Still works (owns his own company).
Started hormone therapy (30 days of pills, one transfusion so far - next in 4 months). He’s feeling fine.
We now have to consider three options (there were more presented like chemo and clinical trials, however these are the three my Dad is considering, and which were presented by the oncologists based on my dad’s goals - We are looking for quality of life - not # years. But of course want more good years with him as well!
1. Continue hormone therapy + radiation to prostate
2. Continue hormone therapy + radiation to prostate (5 treatments) + radiation to spine (2 treatments)
3. Continue hormone therapy - no radiation
He’s leaning towards no radiation - he’s concerned for side effects - short term and long term - of radiation and wants to continue feeling himself and doing what matters most to him. Family is leaning towards radiation to prostate for now, then to spine in the fall to see how he tolerates radiation to prostate.
Thanks for any guidance! I know med advice can’t be given here and ultimately it is up to the patient (my Dad) to decide, but I really appreciate other perspectives and sharing of wisdom.
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LDC2024
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my vote is option 2 Continue hormone therapy + radiation to prostate (5 treatments) + radiation to spine (2 treatments). 5 treatments packaged called "SBRT". I had two months ago with no pain and little side effects mostly fatigue.
May be you call the triage line and talk about side effects and start the medicine as per their instructions. Within 2 week most of people are fine.
I had radiations on T5 after one week I had little inflammation's near to food pipe so its hard to eat and drink so started magical mouthwash that's fix in 3 days. All the side effects started after 1 week of treatment.
I’ve seen more side effects with guys who have their prostate removed. Those are men without metastatic cancer as a rule, though. Your dad and my husband are past that point, as you already know.
Sorry to hear about your Dad. The one item, Gleason 10, means it’s very aggressive. I am surprised his PSA is so low. I am not a doctor, but have had this disease 19 years. Personally, I would choose option 2. That is an extremely small amount of treatments. Cancer on the bones can be quite painful. If 2 sessions will eradicate it- go for it. I hope you’re in BC. I know there are some great facilities there for PC.
His PSA was 19 at time of diagnosis and went down to 0.2 after two months of hormone therapy. Definitely feel relieved it has gone down.
We were shocked he had PC - and even more shocked when we found out Gleason 10 aggressive stage 4. His only symptom was more frequent urination. No pain and feeling good.
His doctor never checked his PSA levels until he asked himself to get checked in January when going in about frequent urination :(!!
#2 - definitely! Side effects of radiation are usually transient, whereas the benefits will last his entire life. He made need a neurological consult if spine metastases are extensive.
Thanks TA! He only has one spot on his lower lumbar as per PET scan, bone scan, MRI. No pain at all so far. Oncologist said radiation to spine could cause fractures down the line and possible spinal cord injury. Is that what you mean by consult w. a neuro …in case of spinal injury? Or prior to?
My husband, age 71 was diagnosed with Stage 4, advanced metastatic Gleason 9 prostate cancer in November. His mets are two ribs, scapula, lymph nodes and seminal vesicles. No vital organs. He’s been on Zytiga (abiraterone) and prednisone along with Eligard injection every 3 months. He completed 28 treatments of IMRT radiation last month. His PSA is undetectable right now. And I’m very pleased how well he’s responding to the hormone therapy and he did great on radiation. Only small side effect was his urine stream was a bit thinner, but has almost resolved. No other issues.
I would go for the radiation if I were him. My husband’s radiation oncologist said if he should happen to get more mets to different bones in the future he could go back in to have them treated. But his IMRT was to radiate the prostate and general area. Not the bones at this point. Those were way up in his ribs and scapula and the radiation oncologist said they were very small mets. Hardly showed up in his PSMA PET scan he said.
His medical oncologist prefers not to start him on chemo at this time. He said you also have to think of quality of life, as well as longevity. He said if his mets had been higher volume (or in the vital organs ) that would be different. And if he happens to become castration resistant to his current hormone therapy, there are other treatments down the line. Or even clinical trials at UCSF or Stanford, closest academic cancer centers to us. So we take one day at a time!
Best wishes to your dad. Please tell him that my husband did very well with radiation. He had a Barrigel spacer and gold fiducial markers inserted by his urologist prior to his radiation. That’s to protect the rectum and the markers are for the radiation techs to see exactly where they’re aiming, so to speak. They also do mapping and a CT scan right before radiation begins, too.
Thanks so much for sharing. I was able to convince him to proceed with radiation based on the incredibly helpful feedback on this forum. He was very reluctant about side effects of radiation but it looks like they are quite tolerable for most, so hopefully in his case as well. He goes this week to get the tattoo marks. Hearing that radiation was tolerable and helpful in treatment for your husband was very reassuring. Best wishes to your husband and wishing him more healthy years ahead.
Oh good! I’m glad you were able to convince him. Will they also insert a type of gel to protect the rectal area? There are different brands, but they all do the same thing. They did my husband’s the same time they put the gold fiducial markers in. Best of luck to him!
Hi LDC2024, for what it’s worth, my prostate cancer is in my prostate, neck and lower back.
I started with (and continue to have) hormone injections - since September 2918.
My neck was in a bad way so I had radiotherapy on my neck (6 lots over a week or so - there was a gap over the weekend at the time). I had minor side effects - like a sore throat for a while.
I then had chemotherapy - I lost my hair and had fatigue for a few days after each treatment. I also had a small period of gout in my foot that cleared up in a few days.
My PSA came down quickly from 2,681 to 13.5 and continued to drop until it settled around 0.6.
In 2022 my PSA started to rise again. At 1.3 I had radiotherapy on my prostate but it didn’t appear to make any noticeable difference and my PSA continued up to 2.8.
I was given Abiraterone tablets (along with prednisone) each day and my PSA came down monthly to 1.6, 1.3, 1.2 and then up to 1.3 again.
My oncologist was talking about a prospect of more chemotherapy.
I added a 4 day fast to my regime and ever since, my PSA has continued to come down.
I checked my graph and it has been over a year since I added the monthly fast. My PSA is at 0.42, which is the lowest it’s ever been.
I have to say my medical treatment hasn’t been too intrusive on my life - given that I’m still here 5 years and 8 months since the original diagnosis (where I was given 1 to 3 months, by the way!)
I did choose to change to a vegan/plant based diet back in March 2019 as well - I started to really think about what I was eating and have tried to cut out all the processed stuff etc.
I believe that chemo is still another option down the line for me when the inevitable happens - but the longer I can keep my levels down the more chance I have of being around for any new breakthroughs 😉.
So I’m not giving you or your dad advice - just sharing my own journey in the hope it gives some insight and confidence in your/his own journeys!!!
I was 56 when first diagnosed - now 62 (March) and still fighting!
Well after my CT scan I had a full MRI - the Oncologist basically said they didn't need to do a biopsy because they already knew what I had. In fact I seem to remember the dialogue went along the lines of:
"The good news is that we don't need to do a biopsy, but the bad news is that you have Advanced Metastatic Prostate cancer - which means that it has spread, to your neck and spine; we can't cure you....how do you feel about that...?"
I think my reply was something like "Well let me sit down and take that all in..."
When I saw my medical records a while later (after I'd had the chemo and was at home with the neck brace still on) I saw that they had given me "1 - 3 months, guarded" which I believe means 'if you're lucky'... lol
But I'm still alive and kicking after 5years + and my PSA is currently still going down...
I stay as positive as I can and keep half an eye out for any new breakthroughs.
In fact I'm getting my blood tested for "Inherited prostate cancer" next week. My Oncologist said that if I have the right genes, then I could be put forward for Immunotherapy (something that I asked about back in 2018/2019 but was told it was still early days and, because I was responding well to the treatment I was on, I should wait until they had more results...).
I'm in the UK and my treatment is all National Health Service - rather than private medical insurance.
They've kept me alive for this long - so I am certainly very happy with my treatment so far, by the way.
Nice! Looks like you are doing all of the right things. Plant-based diets definitely have many benefits for health, however the probability of my Dad going in that direction is very slim (especially as we enter bbq season in Toronto). It’s wonderful and reassuring to hear that your treatments haven’t been a big burden on your quality of life. Wishing you more great years ahead!
You know, my husband was a BIG red meat lover. Always. Thick steaks, bacon, corned beef, pork, sausage, you name it. But we go to monthly prostate cancer meetings and a local urologist attends. He’s very big on planted based diets. Says the cancer cells feed off animal fats. Also, several men in the group shared their experience and how their PSA levels have stayed down after changing their diet. That convinced my husband. He now drinks almond milk and has cut down on cheeses. But the biggest change has been no or very little red meat. He’ll still eat chicken and fish, but not everyday. Instead, he found a delicious recipe for vegan hamburgers. They’re very good! Made with sweet potatoes, cannelini beans and other ingredients. Also, I buy various frozen veggie burgers and chicken burgers. Soy protein chorizo in eggs is delicious. More fruits, too. Believe it or not, this usual carnivore doesn’t miss the red meat! He was surprised at how tasty some of these vegan foods are! And he also doesn’t miss regular milk. Maybe your dad can give it a try!
I was also 56 at dx. PSA 156, full pelvis radiation up aortic bifurcation. Recurrence in 2023 and RO decided against radiation to sites found on PSMA/PET C1, C2 T5, T6 which was ok because I was on the fence. ADT and Zytiga dropped PSA to <.04. A recent scare on CT of T6 lesion that has never appeared on bone scan appears to be stable. In retrospect I am glad I had the original radiation. My MO has repeatably said my disease volume is too low for chemo, so will save it for later, this July is 5 years since dx.I also had no symptoms, not even what your dad had. My GP asked if I wanted a PSA test and I said yes. No side effects from radiation other than drop in lymphocytes but they recovered. I can't say your dad will have it the same way but radiation was my choice and I never second guess my decisions. Others on this forum have decided against it and done well on just ADT and 2nd gen for a long time.
I wish you and your father well whatever his choice is.
Amazing to hear you never second guess your decisions! Confidence in your intuition. It looks like you made the right decision. I was able to convince my dad to proceed with radiation based on sharing feedback from this forum which was so helpful. He goes for the tattoo marks this week.
When I started treatment 2 years ago my Psa was 5664. Mets in bones, nodes and lungs. No real reason for radiation because the Mets were so extensive. Took Casodex for two weeks and then started Lupron . Casodex was stopped after 30 days. Psa dropped to 6 after 10 months and then Abiraterone with prednisone was added. Psa down to 1.02 with prostate intact. Interval resolution is the term I see on my scans. I have very mild side effects from adt but many members curse the treatment. Everyone is different. You have read posts here where several had very mild side effects but I can assure you there are members on here who curse radiation side effects. These decisions are difficult, if you folks are folks of faith I suggest prayers for wisdom. I am near your father’s age as I am almost 74. Best wishes and Gos bless.
Yes my Dad thanks God every morning that “he’s on this side of the grass”. Thanks so much for sharing your story - it seemed you made the right decision with your treatment plan and I’m wishing you more good years ahead.
My Dad is also 77. He has prostate Cancer, Stage 4, Gleason 9, no BRACA. He had Mets in his pelvis by his bladder. Three years ago, when he was diagnosed his PSA was in the 1000s.
He opted to do 6 rounds of Chemotherapy, Docetaxel. The first three rounds were easy and the next three not fun, but bearable.
He achieved fantastic results! There was a ton of cancer kill. The Mets went away and his PSA was at .02. It stayed this way for about two years. I would totally recommend trying Docetaxel! He then went on a pill to stop testosterone growth once the PSA started to rise after the two years. The whole time he was taking the shot to reduce testosterone.
That’s wonderful to hear! My Dad is set in stone about not doing chemo (despite me sharing that chemo for PC can be different than what we’ve seen with family members w. other cancers undergoing chemo who really, really struggled). I’m happy to hear your Dad had fantastic results and I’m wishing him more great years ahead!
My vote would be option number 2 as there can be no gain in leaving a met to the spine untreated, depending of course on the size of the met, in that there is cancer everywhere now in the body, as is in my case, and the ADT is what will keep it in check. I would look at bone scans to review the L5 met at the MO's discretion.
I had prostate surgery first. It was a catastrophic life changing treatment for me. I have had IMRT and SBRT since that botched surgery. Both were a bump in the road compared to that surgery. I am just one speck in a large group of experiences, but I would pick #2.
I know you only asked about the 3 options you presented us with, but, as with Tall_Allen, I too am wondering why triplet therapy isn’t also an option. I am just guessing, but maybe the fears of chemo on quality of life are a factor/ if that’s the case you and he may wish to ask others about their experiences on triplet therapy
yes, you nailed it! Right now he’s very reluctant to chemo as he wants as minimal side effects as possible and continue doing what matters most to him. Quality over quantity. I did read about many people still feeling very well on chemo / triplet therapy, but he’s quite set on it. Thanks for sharing!
Hi LDC2024: I am also in Toronto (Odette Centre at Sunnybrook) and find myself lucky for the quality of care I am receiving from this organization.
I've recently been found to be in stage 4 after 3 years of Lupron and SBRT (gleason 10) ...starting a new round of Lupron, this time for life...I am also being considered for participating in a clinical trial for AZD 5305...will let you know if you are interested
My husband was diagnosed with stage 4 with 9 Gleason score and metastasis to the bone. The urologist gave him 3 years. He passed in 26 months. He had hormone therapy and some radiation at the beginning on some of the spots on the bone. He took zytiga and then xtandi. After that they tried chemo and then radium 223. His PSA was never extremely high the whole time. His bone mets spread to his bone marrow and his platlets bottomed out. In hindsight I feel his cancer should have been treated with extreme aggression from the beginning. There are hospitals like Duke in NC that are known for treating prostrate cancer. I would find one. They know of all the latest clinical trials.
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looking for input - RIsing PSA with Negative PSMA Pet scan
