Feb 2023 my husband PSA was 7.4 considered non urgent by our GP
Private MRI showed stage 5 prostrate cancer in situ of right hand side
Biopsy showed a a Gleason score of 9
Bone scans clear CT scans clear No node involved
Diagnosis TP3a
Prostectomy nine weeks ago
The results were not great.. two focal margins at 1mm
Nodes not removed or tested
Spread into the vesticlar sacks on on one side
PSA of .6 … follow test .7
Just started hormone therapy and awaiting appointment for Oncology to hopefully get salvage clearance as they call it
We are absolutely terrified my husband is 72
Every bit of news has got worse .. should we have opted for the prosectomy or gone straight onto radiotherapy ?
We were advised against full node removal They never removed any even to test and now it’s possible my husband has cancer in the nodes and on the bed of where his prostrate was
We have been told there is nothing to worry about as what .6 PSA is showing is small micro cancer cells
What we do know … these are extremely aggressive
All my husband has been given so far is hormone replacement..which only can stop the testosterone feeding this .. What can we ask or expect oncology to do to help him
I am thinking there is no cure now and it will just get worse
In bits
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I am sorry to hear the news of your husband. Please listen to Tall_Allen, he is an expert. I would suggest finding a new primary care provider, since he/she obviously helped to put your husband in his current situation. There are numerous therapies available. Don't give up hope!
My PCa is Gleason 9 too, diagnosed in 2016 and aggressive. It spread to T11 spine, 6th rib & in both hips. Have had radiation and chemotherapy and have been on ADT since. Except for a small hiccup when it spread to my T10 and was radiated by SBRT, I have generally continued my life as previously and my scans have shown that lesions had gone. My psa has been <0.01 most of the time. I am 75 next month and expect to live a lot longer yet. There are so many methods to treat PCa. Stay positive.
Hi, My 79 year-old father has PC in UK. He's had prosectomy, chemo, and many other treatments, for last 18 months he's been on abiraterone and prednisone.. For last 6 months that treatment has been failing and his PSA more than doubling, which mentally has been challenging for him. He has another appointment with his doctor/oncologist at Southampton General in July. He's a stubborn father, but I'm pushing for him to ask for Pluvicto (lu 177) if suitable, that is being offered at Soton General on NHS as a clinicial trial because the General is a teaching hospital. Your hubby has many treatment options ahead of him. The one thing everyone on this site will tell you is that a positive mind set, and muscle building excercises are key whatever your treatment route. The worst thing you can do is sit around worrying, the best thing you can do is go out for long walks or do some other excercise, and keep his muscles in shape.
Hi Goggieland. Prognosis for a 9 is not good. However, I’ve been a 9 for 8 years. Good years it turns out. Can you get a PSMA scan in England…or elsewhere? PSMA might help you get a more comprehensive picture of what is going on and how to move forward. Best of luck to you and your husband.
Here areMemorial Sloan Kettering's often-cited nomograms...you can lookat these for both pre-RP and post RP results> these are not prediction tools, but do show you the results for thousands of men treated and followed by MSK for many years. I hope the results give you some more hope for your Hubby. Every year approx 200, 000 menare diagnosed, withthe mortality approx 30k. While Gleason 5 is much more concerning, NOT a death sentence at all. Men here are mostly those who have current metastatic diagnosis...NOT representative at all of all PCa men re outcomes! and even with that, many here have positive stories re longevity after diagnosis.
Lots of good info here about treatments for men...especially metastatic treatments.
in 2013 I was diagnosed with Gleason 9 prostate cancer. My treatment has been beam radiation, Lupron, zytiga and prednisone. I’m still doing ok and have a PSA of 0.05. I play golf 3 times a week.
Don’t be too upset at this point. There are options to work on your husband’s PC
thank you … we are now wishing we had gone along the oncology route instead of having the prostectomy.. but at least he is on hormone therapy now …keep playing golf that’s good to hear
Obviously, this has come as a shock to you. You should know that Tall_Allen (and some others) offer great information on this site. In addition, I can tell you that there are many patients who survive metPC for "long" periods of time. We are all individuals and come to this disease with different physical make-ups, ages, ....and thus respond to medical treatments differently. But- this is the time to ask questions and do everything within your power to fight this disease and hope for a good response to treatment. I myself have been on ADT (androgen deprivation therapy) for 11 years, and I am pretty sure I have read other posts of people who have responded to treatment longer than I have. Of course, there are unpleasant side effects that come from the medication(s), but I still enjoy my life immensely and hope to continue to do so for years to come. Best of luck!
No 7.4 in February seemed not tooo bad but following the biopsy and a Gleason score of 9 we started to really worry After a radical prostectomy we found the timer has grown the vessels that hold the semen were involved and removed .. surgeon took no nodes !
We are after last PSA looking at a score of . 7
So there is still cancer cells left behind
Bone scan and CT scan showed no mets but that was 12 weeks ago now and they don’t think it’s necessary to repeat them
I do
He has just started hormone therapy …so far
My family is in pieces as the Gleason is so so high we are worried the Radiation will not work
But thank you for your reply and my apologies for not explaining better
Like thousands of others that read this site, I was diagnosed with Gleason 9 with a shocker of a biopsy report. That was 9.5 years ago and I'm still going strong. Calm down and read the suggestions of those more experienced than myself. Get at least one person on your team that you can chat with.
my dad has Gleason 9 and he had it since 2015 many people do! It still very treatable the only thing is it may need to be treated with more than one modality. My dad has been on hormones since 2015 as well - radiation and that worked awhile then he needed second line. Please don't freak out I wasted years of that - get a second opinion at a good hospital and the guys on here can help you with what to do and ask!!!
RPin general is not inferior to RT.....and if successful, avoids the undesirable consequences of the Chemical castration that is given for Gleason 9 men who have RT!!! Don't " what if "this...waste of mental energy. Some studies indicate that having both internal and external radiation PLUS chemical castration provides better results.....no study can predict the result for any one man of course...results expressed in probabilities, not absolutes!!!
According to the CEO of the Merck company 1 out of 3 men diagnosed with prostate cancer will develop metastasis and 70% of men with metastasis will die inside 5 year after become metastatic. I am still alive 5 years after my de novo polimetastatic diagnosis but I believe to the CEO of the Merck company. You are still curable therefore work on that. TA told you what you should do.
I'm also Gleason 9 but my cancer spread to my lymph nodes and multipe bones. I started lupron & Zytiga in late 2017 and my PSA has been undetectable since then. Yes, it is a scary thing to go through. But there are plenty of guys worse than me that have been around a long time. Believe.
I have been recently diagnosed with the same profile as you have described. I am Currently on Eligard and Apaludamide. My question is: have you done other therapies such as radiation in the past few years or just ADT.
My primary treatment was surgery. Metastasis was found afterwards. If you are newly diagnosed adding Docetaxel has shown an added benefit to ADT. Hope you respond as well as I have.
Thank you .. we live in England so you have what you have with regards to choice of health care .. even is you do go private you would see the same consultant..
I know Kaiser system here in USA, and I think famous Mayo clinic also, have a biopsy break point of 6.5PSA for men 70 and older.....what was his previous PSA, and at what age? need to know that before blaming the Doc IMHO.
PSA is not routinely monitored in the UK under the NHS so they may not know what his previous value was. I had a 'well man's ' checkup at age 60 and PSA was not included. It wasn't until I had symptoms and went to my GP last year at age 65 that I found out I had metastatic PCa.
"PSA is not routinely monitored in the UK under the NHS ..." That is just idiotic. Such an inexpensive screening test. I think they call that "penny wise and pound foolish", don't they?
something Definitely should be done to change this … if you don’t go over the guide lines of 4.9 GPS just yawn and say next … they don’t even monitor ( well ours didn’t ) should at least be the same as US and be a 4 and any doubling should be noted .. It’s horrendous in the UK
My PSA was only 2.7 when a suspicious DRE got me sent to a urologist for a biopsy. Gleason 8. Both screening tests should be administered at each and every annual physical. I had to pester my GP for that DRE and he had refused to call for a PSA test. I was 66 at the time. The urologist was incredulous that he had to order the PSA test; that it hadn't been ordered by my medical school affiliated GP.
review the Peace 1 study. My husband had a form of triplet. His PSA didn’t go below 3 after surg. Had been found in pelvic lymph, margins etc. pet scan at Mayo found in lymph in chest. Started with chemo, then 6 mo zytiga, Lupron, then 37 radiation and the meds then meds for a year. 7 years non detectable no evidence disease, 6 years no cancer meds or treatment. Other than PSA every 3 mo, yearly pet.
diagnosed sept 2020 stage 3 .. traces in lymph nodes outside prostrate Nov 2020 put on H T protrap monthly for 6 months then 3 monthly also chemo tablet Zytiga 1000 gm for 4 months until liver enzymes started reduced to 500 gms then. PSA went down from 25 gradually over 6 months to May 2021 undetectable past 2 years has remain at that point But remain on HT 3x monthly and Zytiga ( 500) gm daily Hot sweats at night vey much worse in summer months. Hope your your husband keeps better and finds right treatment and you all can be less stressful
I had a similar problem in 2015 was told my PSA was normal by my GP here in the UK and that I just had an inflamed prostate, 6 months later I moved house so I change doctors and then insisted I be referred to a urologist & Oncologist.So in short my don't worry turned into having Prostate Cancer.
Not the first time I have come across this.
Ive been on Zoladex now since 2017 but have had Chemo & salvage radiotherapy, followed by high dose Radiotherapy in 2021 on my L2.
I am in Gloucestershire. UK
On the NHS they all follow the same I'm told even the private Oncologist generally follow what the NHS recommend.
My MO is pretty good we generally have a good chat At least twice a year sometimes every 3months.
If you go on any Trials, like I am on the stampede trial you get monitored a bit more closely.
Good luck with the treatment you will find these guys on here very helpful and a wealth of knowledge.
thank you and I hope your well and continue to be so …. It is not right in the UK that the norm for PSA is 4.9 while in America it’s 4.0
We are convinced my husband had PC last June and our GP was not concerned even enough to say check it again in six months
As I said left until now with his data he would be in a much worse place than he is now .. thank goodness he had another check himself..A warning indeed to the lack of concern by some GP practices in UK
Yep I agree there is a lack of concern in the UK when it comes to diagnosing PC sorry I can't recall the PSA level before they think it needs further investigation but my neighbour was told not to worry it was common to be that level what ever that was for people his age he was 75.He died 6 months later it was in most of his bones. Further investigation probably would have given him a few more years at least.
Take care hope you goes well with Hubby's treatment.
Take a deep breath and relax. You are now starting a marathon, not a sprint
Don’t get hung up in the Gleason numbers. The Drs just use the rating to classify the cancer
Both the hormone and the radiation treatments can hammer all Gleason scores (1-10). Btw if the score is 6 or below, most Drs do not even consider the cells cancerous at all
Let the surgery heal well before starting the radiation. Your surgeon can guide you as to best timing. Mine insisted that I wait 3 months minimum before starting the radiation. Or increase risk of urinary issues showing up down the road
Good luck and try to find ways to enjoy each day for the years ahead!!
My husband was also GL 9 in 2014, and though the salvage radiation was not enough to eradicate it, hormone therapy worked for 9 years before we needed to turn to other treatments. But I remember the kick in the gut when we were in the place that you are. This is a great place to get help and advice! I'm praying for you and your husband.
I was Gleason 9 with bone metastases 3 years ago. Still here, still enjoying life. And mine was aggressive because I was 48 when diagnosed. I wouldn't worry too much. Keep active and eat healthy. That's my advice.
I hope you no longer have that original doc. Since 4 is the upper limits of normal, he was a bit off. I would try to get an opinion with De Kwon at Mayo in Rochester Mn. One of top in US in prostate cancer. You can google him at Dr. Eugene Kwon utube. He has some basic utube and those from conferences that are interesting. You can call Mayo and ask to speak with an intake nurse. He is very aggressive. Been seeing him since 2015.
Take a deep breath, then another and relax. TallAllen is right on possibilities.
Decisions made are always right; never, ever think you made the wrong one. Second guessing only hurts the present and future.
I was diagnosed in 2015 with Gleason 9, Stage IIc, aggressive prostate cancer. At that time I was 67 and had survived a different Cancer for 40 years. Had IGRT 25 sessions then two sessions of HDR Brachytherapy while on 24 months of Lupron. After off the Lupron three years later psa doubled thrice to over 2.0.
Three years ago I had two lymph-nodes radiated and was classified as oligometastatic prostate cancer (OPCa).
Two years ago I started Nubeqa and Lupron again. After three months my psa has dropped to <0.02. Both these medications are hormone inhibitors not replacement treatments.
There are only four stages but some individual stages have multiple steps.
Psa of 7 is low. Mine was 20.6 but there are many on this site with a psa in the hundreds. Have your family read my post, psa of 7 is not high. Normal by age ranges between 4.0 and 6.5 depending on who is publishing.
I suggest as to questions to write them down and hand a copy of them to the oncologist. Then two things: If you do not understand the answers ask for a clearer explanation. If you can ask for a patient advocate to be there to write down the answers or have a family member or friend be there to write down the answers to your questions.
Best medicine right now is to step back, love life, relax and live your lives as before.
Be Positive in your attitude! Up date us as time allows please.
Remember this: Cancer is just a word - not a sentence.
My husband was 49 and diagnosed Gleason 9 with metastasis to bones at 1st diagnosis and PSA over 677 in 2017. It's definitely frightening and a crazy steep learning curve. I'd search Gleason 9 in this forum- read most recent posts since there have been so many new treatments in the last few years. There are many guys (and family/friends) Gleason 9-10 on here- lots of treatment options for your husband. 💙
Gleason 9 3.5 years ago, had a NGS performed. Turned out I had BRCA2, a PARPi has helped tremendously. Do research on the mutations!
I’m so sorry for what you’re both going through, but try not to worry. Get yourselves settled with a Medical Oncologist who specializes in PCa (if you can - I’m in the US, so not sure how the intricacies of the NGS work) and take an assessment of where things are at.
I was diagnosed with a Gleason 9 PCa 16 years ago, in 2007 at age 51. I’m now 67. I’ve had numerous reoccurrences, but they’ve all been dealt with effectively. Realize that though we have Gleason scores in common, all PCa cases are somewhat unique to each person. The MO does the heavy lifting to help determine the best way to deal with your unique situation. If you believe the Nomographs, I was to have died in 2012, so somebody still wants me here! It’s a frightening time, joining the fraternity that NONE of us ever wanted to be a member of, but you’ll find many here who can help with information and encouragement as you proceed on your journey. I’m still planning to be around for a long time yet, if I have any say in the matter…so try and stay positive, as I really believe that alone can have great healing powers! Good luck to you both!
I’m sorry to hear that your husband joined this club. No body wants this nasty prostate cancer. Your husband is about my age, I’ll turn 72 this year. I hope sharing my store will help easy your mind.
Here is my history of my battle against this nasty prostate cancer. In Dec of 2020 I had a PSA of 4.2. So in Jan of 2021 I had a transperineal biopsy with 12 samples taken. Three of the sample came back as cancerous (2 were graded as a 6, and the other as a 7, (4+3) and peri neural invasion was present. I decided to have prostatectomy, which they did March of 2021. My first PSA was done 4 weeks later in April 2021 and came back as .13. Later that month the pathology report on the removed prostate came back as a T2C Gleason score 9 (5+4) with extracapsular extension present in the left posterior lobe. The margins were all negative. Then in August I had the next PSA which was a .2. A month later in the middle of September I had another PSA done which came back as a .3. So since my PSA had slowly been climbing, I had a PET/CT scan later in September which came back showing increase uptake in the prostatic bed. I had one more PSA done in Nov which came back .67 So I immediately started radiation therapy to the pelvis. In Jan of 2022 just after finishing my radiation. I had the next PSA done which came back as a .6. Then in April it dropped to .4 and in May to .36. I was getting ecstatic thinking that my prostate cancer was in check. But in August it started to rise, first as a .6 and then doubling in October to a 1.2. So in November, I got a PSMA PET-CT which showed an increased uptake at T1. So that same month I had an MRI of the thoracic spine to rule out metastatic disease. Which came back positive, so in December I went back for another round of radiation this one focused on the metastic lesion at T1. Upon completion of my radiation treatment in January of 2023 and immediately flew to MD Anderson in Houston for a second opinion. They suggested that I wait 12 weeks from my completion date of my last radiation , which would be the middle of April, and if it had climbed, schedule another PSMA pet to see where it had moved to and consider intermittent androgen ablation with Lupron. Well on the 22 of March i had appointment with my local Urologist and he wanted labs which showed that my PSA was already climbing and my testosterone was 532. So I made a command decision to start Orgovyx (Relugolix) tablets immediately. I’m also taking 2 Calcium 600mg vitamin (1 in the morning & 1 at night) 550 mg of Vitamin K. Plus I’m getting scheduled for Xgeva shots every 4 weeks. I’ve only started the Orgovyx the last week in March and have not received my first shot of Xgeva yet. But I couldn’t wait another three weeks to talk to MD Anderson. Just got my first PSA since I started Orgovyx and my PSA has dropped to a .6 and my testosterone dropped to 14. I just had another PSMA done on the 14th of April and it showed that my prostate cancer has not spread and thought it showed some activity at T1. I’m hoping that the radiation still working. Additionally my PSA dropped to a .2 and my testosterone has dropped to 11. As far as side effects for being on Orgovyx. ED of course and a little brain fog. I’m do a mile and 1/2 (about 30 minutes) on my treadmill and I spend about another hour or a little more on my bowflex, getting some resistance exercise, and I’m still feeling great. Just got the results of the latest blood test (PSA .1 Testosterone 10) & talked to my Dr at MD Anderson in Houston. Everything looks good and he doesn’t want any change to my treatment plan (Since I had only one metastic lesion, he doesn’t think I need to start Exgeva shots). He does want a Bone Mineral Density Scan though. God is so Good and we will keep fighting this cancer one punch after the other.
thank you so much for sharing your story ..in England they do nothing until your score is over 4.9 which is dreadful
My husband was 4.6 last year in May this was ignored.. he was worried and decided to have another check in January instead of waiting for his yearly check and it came back as 7.2 our doctor thought that was non urgent so we went and had a private MRI
Then biopsy ends as a said with a Gleason 9
One question is Orgovyx a hormone tablet ?
My husband is on them now after prostectomy led to a margin break through and an existing spread with the score of .6
We are hoping the oncologist is right and this hormone therapy will take his score post op down and then they will use radiotherapy He’s C on this medication for at least two years
Yes it is a form of hormone treatment. It’s a daily pill that immediate starts reducing the testosterone versus Lupron injection which don’t start immediately. With either Lupron or Orgovyx you will have some side effects. I believe the Orgovyx works faster with less side effects. Hope this helps
The fear isn't going to help you at all. Probably everyone here has stage 4 cancer so take comfort you are among friends who understand what you're going through.
Ask questions, get the best advice you can get, and follow it. Best wishes and best of luck.
May be wrong but I it is common that after a certain age radistion therapy is the preferred choice. It is the past for him now. However, it is not too late. Find an Oncologist that specializes in PC, preferably active in trials. My late Onc (Dr Robert Amato) is of the opinion that it is better to hit it hard with chemo and ADT sooner than later. Gourd Dancer, myself and many others are in that group that benefited from his approach. BTW ditch the GP when it comes to your husband’s treatment. He would have been in a better position now if he knows about the state of new PC treatments.
I recommend he get a DNA test to see if he has a mutation that would respond to specialized treatment. My husband was diagnosed in 2015, underwent prostetectomy, radiation, chemo, Lupron, Zytiga, and PSA kept rising. Finally suggested he have a DNA test. He has the dFANC2 mutation and is taking a drug currently in a trial and PSA is actually lowering and mestasis not moving much. I think DNA test should be the first test after diagnosis. It’s not that expensive. Best of luck to you and your husband. It’s a marathon, not a sprint.❤️
...its overwhelming at this point and it does seem like your staring at a mountain that cant be surmounted, but as we all learned in life you can, one step at a time, dont look up as you move, and in short order when you pause and look back it will amaze you how far you've climbed...this thing is far from over. Here is my list of 'woulda-shoulda-coulda' that I can share; take from it what you think fits your case. I would definitely get another opinion; WHY did they not biopsy at least 3-4-5 lymph nodes! May have helped you understand if the lymphatic system had been compromised. Dont get it...
You need a PSMA PET scan before doing any other treatment...I personally would not move forward until I did that...some references on PSMA PET...this scan is changing the SOC and in nearly half of cases changes the expected treatment regime...
Next, you need genomic testing...you must know what type of PCa cell you are dealing with. GS is not enough...its like knowing you have ice cream, but not what flavor you've been served...here is Mapping of all the testing that is available and some references on Genomic testing...PS I had the Decipher test which you can still get as your tumor has been stored and preserved...
Last, listen to this panel of doctors go through 3 case studies...the format is good in that they present a patient, their diagnosis and then ask each Dr what they would do...at that point they reveal how the patient progressed and show how different treatments either hit the mark or were off...you can learn a lot from these case studies regarding treatments, options and outcomes, then generate QUESTIONS to ask...if you dont get them answered to your satisfaction find another Dr! Dont take no for an answer and expect that your questions be treated legitimately and compationately.
our oncologist will not do a pet scan he wants to use hormone therapy for three months then radiotherapy..after The surgeon who removed his prostrate telling us his margins were clear when they were compromised… it’s making me worry that the oncologist is wrong
...ADT before sRT is fine, but if it were me I would get a PSMA PET first. I think that should be by now SOC (standard of care)...the scan can show conditions that would make sRT (salvage radiation) not effective. You never know. Get 2d opinions as well. Rick
If you can afford it I believe you can pay for a PSMA scan in Uk. Or take some articles to your doctor about PSMA and ask him to explain why it is not an option for your hubby.
yes I have looked into it from advice from this forum… we asked our oncologist why he wouldn’t do one pre radiotherapy and he replied in his experience it wasn’t necessary.. which possibly may mean it would cost too much .. NHS is on its knees in The UK
We can get this scan done privately which we are looking into as it makes total sense .. one question should it be done after the three months of hormone therapy that we have been told to take prior to the radiotherapy or done now ? I am unsure
…it would be better to get the scan before ADT treatment. ADT treatment is given before sRT radio therapy to halt and shrink the growth of the tumor and also weaken it. It is found that when ADT is given before sRT therapy, it improves the effectiveness of the treatment. But standard of care today should include a PSMA PET before any treatment. That scan can change the treatment regime in 45 to 50% of cases. if you can’t afford it, I would go get the scan.
…in the US I had to fight as well to get that scan done before my radiation. But I was in the very early stages of the scan being available in the US. By now I believe it should be standard of care to scan before proceeding with any treatment.
Try to convince your oncologist with different references. If that doesn’t work, and if you can afford to scan by all means do that before ADT and proceeding with any treatment. That would be what I would do if it were me. Thanks.
...I just saw this on the forum and thought of your case. This example is a classic illustration of how PSMA PET is changing the SOC (standard of care). It will soon be mal-practice NOT to use this scan before choosing any treatment option. Take a look at the portion of the chat I attach...I have seen this example played out many times elsewhere...look, I expect that your husbands scan to be clean and show he has no MET (metastasis) outside the prostrate fossa...but, what if he does! Would it make any sense to go through the trauma of surgery only to find your cancer was MET and that surgery did not cure it! No! And the cost implications for the NHS are elevated, not reduced...so try this approach.
Here is a medical discussion via case studies that addresses how PSMA PET is altering the SOC. Go to Min 30:32.
From Podcast; "Min 30:32; need for PSMA PET before surgery even with high PSA. Doctors admit that in the early days of this new scan, they are learning how much they do not understand of this disease. The scan is changing the SOC. This is especially true for Gleason 8 and 9 patience."
Also, how Dr's are only now finding out how much they dont know about PCa and how PSMA PET is changing the paradigm of treatment; go to Min 26:48.
Currently your PSA should be 0.03 and non-measureable..0.6 and 0.7 indicates the cancer is still there.... but dont panic. Sounds like you are doing the correct path now.....6months check ups and blood test will be an indicator....
My husband has been cancer free and hormone free. No meds after treatment with LU177. We went to Fortis Memorial in India. dr Ishita Sen. My husband had lesions on his bones and was radiated several times. He had incredible results. from LU177 when nothing else would work. Wish you all the best❤️
Also if a doctor doesn’t want to do what we want we find another doctor. My husbands cancer was very aggressive and sounds a bit like your doctors aren’t being aggressive.
We got our own PSMA. Our doctor at Mayo Clinic suggested but at the time it was experimental. If you don’t think your doctors are doing the right thing, get other opinions.
Try to find a doctor(s) you can trust in. My experience is that 9/10 of them are sloppy and wanting so this is not an easy job. Ask on this forum as there are many people here in England and they might lead tou to a good doc. My experience also is that urologists are less competent tha MOs or ROs (but maybe i need to meet more MOs and ROs.. lol).
If you cannot find a doc you can trust, you will need to study yourself up to be as good as the doctors if possible.
There is sooo much we can do ourselves! Our very first line of defense is nutrition, which is usually totally overlooked here in the U.S. Also, search out 'Dr. Shallenberger high dose melatonin'. 'vitamin C-IV', Dr. Thomas Seyfried, Joe Tippens and so many more...one will lead to another. Also, you have Jane McClelland there in the U.K. She wrote a book called, "How to Starve Cancer without Starving Yourself," after she was sent home to die with uterine cancer (I think). Better yet, go to her facebook site and commune with others in your same situation....be sure to listen to a review of her protocols by a man by the name of Ron Trotta...he had prostate cancer w/mets all throughout his skeleton, and his last check up was cancer-free! That site also has a list of doctors who have integrated her protocols in their practices. And try to keep your spirits and thoughts positive! Thinking of you...
thank you for this information.. I also agree nutrition and diet info is extremely important I will look up Jane McClelland now and investigate further what you have said again thank you 🙏x
GL 9...Stage 4 (there is no Stage 5 in USA) and diagnosed 6/2019. 4 years later....PSA is undetectable and I feel great. Spend an hour daily doing aerobics at the gym. See my profile for the journey to get here. I am already 2 years past the expiration date they gave me. Bon courage!
I find the advice given by Tall Allen to be sage advice. I had a G9 and received hormone therapy as well as aggressive RT. Every patient is different. If the prostate is removed and the scans are negative that is a good indication. I had pelvic RT. There are still options but the greatest quest is to get a doctor who is competent and sympathetic. Live every day to the fullest. Wishing you both well.
thank you for your reply … as you say every one is different and a lot of these lovely guys are in America where treatment options appear to be better but we do have good oncologist so you have to trust them I guess x
I am sorry your husband received this diagnosis. I know it is scary. It is especially hard during diagnostics. It seems all the news is bad news. We hear the word cancer and we tend to lose our minds and think it is the end of the world. I still thought I was immortal at the age of 42 when I got the news. The bone scan and c.t. being clear is awesome. Hormones are a drag but they work and there are tons of treatments to fight this disease. Even if and I do mean if your husband is incurable he can still live a long full life and most likely die of something else. Look I was only G-7 but I was stage 4 at dx. Cancer in my lungs and bones. My PSA was over 3200. That was 17 years ago. I am still here. There is hope and then there is hope. Todd
I was diagnosed in 2012, Gleason 9, psa 31 at diagnosis, 3 Mets, stage M1, doubling 3 weeks, I am currently 70.5 years old. I had 1 or 2 suspicious nodes. Have been on lupron, and Xtandi basically. My psa is .02 for years. Had a tree in bud in right lung. All Mets , nodes, lung are clear , or asleep. They don’t show up on cat scan , bone or pet scans. Took many supplements during all this, aspirin, green tea… best of luck…
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