Good morning all, and thank you in advance for reading my post.
Yesterday, my dad phoned me to say he has grade 5 prostate cancer after having an MRI scan, and it has gone through me like at atom bomb.
He has been unwell since December 24. Thought it was COVID but never shook it off so started the journey with a regular GP visit. He didn't have many symptoms, but had consistent drenching night sweats, tired and has lost weight by about 2 stone. He states he has no pain anywhere and gets about his business fine, apart from the weight loss, you wouldn't know he was unwell.
Next stage is to have a biopsy under general and see what exactly were dealing with and finding the next steps.
I could ask, what are his chances etc etc as I'm desperate to keep my dad, and I'm the worst at catastrophising generally. I guess, I just need advice. As a family, it'll be our cancer journey too and I need to learn how to be the best son I can be to help everyone, and him. He's carried me from baby cot to now at 41 years of age, now it's my turn to carry him.
Advice and support would be welcome. Thanks again for reading.
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Anst11
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MRI can only tell you that there is suspicion for high grade prostate cancer. Only a biopsy can tell you if there is indeed any prostate cancer, and if so, what grade it is.
Prostate cancer is almost always asymptomatic in early stages.
I, too, had prostate cancer PI-RADS grade 5. I'm from the UK as well, based near the south coast. I did not get on well with the NHS, scans, etc took ages to get done and then to find out the results.
A biopsy is the next step. I'm surprised it is under anaesthetic. Is it a rectal (not good) or perineurial biopsy (much better)? Then, on the NHS, 2 types of scans - CT and bone to identify any spread. At this point I went private and had a PSMA PET CT scan which is a lot more accurate but is not usually available on the NHS. This showed no spread. I went the radiotherapy route. I recommend not getting railroaded into a radical prostatectomy by the urologists.
I also went on ADT (Androgen Deprivation Therapy) which cuts the testosterone in your body, which the PC feeds on.
Please feel free to private message me if you have questions. Do you know your father's PSA?
I too am in the UK/London area, and was diagnosed via MRI and trans perineal biopsy.
Decided the NHS treatment of CT scanned radiotherapy was too fraught with side effects of urinary and rectal nature.
So I went to the Royal Marsden in Sutton, to see Dr Alison Tree, who runs the MRI-LINAC clinic, where radiology is performed very accurately inside an MRI scanner, the radiation ceasing if the prostate moves out the planned treatment area..
Eg almost zero side effects, after 2 years now.
PSA has remained at 0.2 every 3 monthly examination so far(!)
I must say that Dr Tree's clinic was 'almost' a very pleasant experience, perhaps except for the reason i was there .......
As others have said, after the shock, time to gather as much clinical data as possible, then, inform yourselves, discuss with your medical team and make treatment decisions.
Depending on insurance and financial toxicity, likely you'll want a Biopsy, imaging, CT and PET, preferably PSMA, Genetic testing, PSA tests.
While you're doing that, review the literature on Prostate Cancer (PCa) and understand the terms and their definitions.
The familiarize yourself with treatment guidelines, here in the US, the NCCN and American Urological Association, in Europe, the European Urological Association(?)
You'll want a medical team - urologist, oncologist, radiologist.
One area to look into once you have more clinical data and are familiar with terms and definitions, doublet or triplet therapy - pubmed.ncbi.nlm.nih.gov/360...
It's ok to hit the panic button when you get the diagnosis, but, time to begin the process on informing yourself, discussing treatment choices with the medical team and making treatment decisions.
There have been many advances in treating PCa that offer the possibility of managing it as a "chronic" disease though we all understand, not all may be able to. Still, it is possible to live some time with this cancer albeit with treatment and associate side effects.
There are patient resources which can help inform you, an example, the Prostate Cancer Foundation - pcf.org/
I have high risk PCa, GS 8, GG 4, rapid PSADT and PSAV, 18 months to BCR, yet, 11 years later, here I am.
Hawk56 brings up some excellent points but as was alluded to by BondiBeach many of the things we take for granted in the USA health care system may not be available in your English system.
I realize the atomic explosion is both deafening and overwhelming but you need to relax. Let me explain. First there are ONLY four stages of cancer. So your statement of a fifth one leads me to believe your dad is referring to his MRI results.
With that said the PIRADES staging used in the MRI go from level 1 to level 5. As mentioned above by TA these findings on the MRI are ONLY suspected cancer levels. He needs a biopsy to get the real diagnosis.
Now for the good news. My MRI showed 2 sections of level 5 and one section of level 4 suspected cancer. My biopsy was definitive at Unfavorable Intermediate with a Gleason score of 4+3=7. It showed 95% of level 4 and 90% of the samples showed cancer of 90%. In other words a lot of cancer!
I had radiation to both the prostrate and pelvic area and was placed on ADT (hormone therapy). After two years my cancer appears to be in remission or at least heading in a positive direction and I am living the good life. Actually a better life now since I now understand the value of family and friends, exercise and diet and seize each day with excitement.
So please relax and return here when you have more questions or just need information after the biopsy results. You will find this group very knowledgeable and we have all been there.
first off, I’m sorry to hear of your father’s diagnosis. The initial shock of this news can be devastating. Now know this, the things you read about life expectancy are very outdated. The treatments have vastly improved in recent years. I had a psa of 5664 with mets in my nodes, lungs, spine, pelvis and femur. I was bed ridden for 8 months because I refused treatment based on the horror stories I read about adt side effects.
I am 74 years old and now hunt, fish, canoe and take care of my wife’s honey do list. Well, most of it. I had no chemo, only adt so far. I statred with lupron tempered with casodex and after about 16 months added abiraterone. My side effects are no libido, a very mild hot flash once a week however I do sweat easily. I also experience mild fatigue. I use supplements to mitigate adt side effects. I can still drag a deer out myself and load and unload my 14 ft canoe. You got this. God bless.
I had heavy night sweats for years before my DX. (My MD GF even told me they often coincided with cancer but my PSA was steady. DRE ultimately prompted biopsy)
Severe weight loss with cancer is known as cacchecia (sp?) and is usually a sign of advanced cancer. I met a man the other day who had metastatic lung cancer, but a tailored chemotherapy shrank his tumors and he put 30 lbs back on. Hopefully a similar outcome here. Good luck.
Everybody is different. I had no symptoms at all but still have stage 4 cancer. Get the biopsy ASAP if you haven't already and go from there. Make sure your doctor listens to you and talks to you in terms you can understand. Empathy is everything.
Make your decisions based on the best information available. Best wishes.
Anst11 As noted by several members , your MRI shows a PI-RADS 5 , and this is a red light only indicating a 90 % chance of finding cancer after a Biopsy . . An MRI will indicate RADS 1 , 2 ,3, 4 or 5 RADS 1, 2,& 3 are amber lights - a lower chance of finding cancer , but not zero . RADS 4 and RADS 5 are red lights . A PSA , DRE ( Digital Rectal Exam ) and an MRI does not mean you have cancer --- ONLY A BIOPSY IS CONCLUSIVE IN DETERMING PROSTATE CANCER . THE GRADE and STAGE .
Go for a TRANSPERINEAL MRI FUSION BIOPSY , not a TRANSRECTAL . For obvious reasons there is a lower chance of infection - possibly sepsis .
NORWAY has banned Transrectal Biopsies , following an organised campaign from a mother and daughter , followiing the death of the father from a Transrectal innfection . Others have banned or moved away from this form of biopsy . Top Urologists have refused to perform to perform them also .
Finally . Educate yourself on prostate cancer by purchasing Dr. Patrick Walsh's book " Guide to Surviving Prostate Cancer " plus follow Dr. Mark Scholz U Tube Series .
Good luck.
NOTE : Following the Biopsy ( pathology ) results . Get a 2nd or 3rd opinion to confirm your Gleason Score . WHY . Because it will determine the treatment options available to your father .
You have found an excellent resource for both rational information and plentiful hope. Best of luck to your father and your whole family as you sort through the information to come and decide on a treatment plan.
All, thank you so much for the information provided. I can forsee this forum being an excellent form of knowledge gaining and support. Can't thank you enough already. I will come back once his biopsy and results are done.
Do not PANIC...........See what they come up with when they diagnose your Dad's biopsy. Keep the name of a good Medical Oncologist in your vest pocket in the event your Dear Dad needs one. Keep posting here, cause this is a great place for information and comradery. Also what is your Dad's age? I'm Guessing he's in his mid to late 60's if your 41 years old. Give him our best regards (and remember to laugh)....
Welcome! We're thrilled to have you here. Please feel at home. You'll soon discover that some of the finest minds on Prostate Health regularly contribute to this forum. Wishing you all the best for you and your dad.
Here is the link to the Euro guidelines for PC, which is the basis for the UK guidelines issued by NICE -The National Institute for Health and Care Excellence (NICE). Google NICE prostate cancer guidelines for more links.
There are variations between the four regions in the UK but each will follow a fairly narrow Standard Of Care (SOC) investigational/treatment pathway. Things that you feel may be beneficial for your dad outside of SOC will need to be private or clinical trial. Many things in the private arena are cheaper on the Continent, even including travel/accommodation.
Ask for copies of EVERYTHING, take notes and don't feel intimidated to ask questions untill you understand what is being discussed - your taxes are paying their wages.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
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