Hi everyone, I am new here. My father (50 years old) has been recently diagnosed with high grade prostate cancer. The diagnosis came as a shock to us but we are trying to approach it head-on and gather as much information as possible. We are researching to decide on the best treatment moving forward and would really appreciate if anyone with similar diagnosis would be willing to share their experience or any information that could be helpful.
Disclaimer: I am not a native English speaker. We live in Europe and I am doing my best to translate everything as clearly as possible. If anything needs clarifying, I'll be happy to do so!
Diagnosis so far:
Total PSA: 1,660 ng/ml*
Free PSA: 0,293 ng/ml
fPSA/PSA: 17,650 %
Biopsy: Gleason 4+5=9, tertiary minor pattern 3, ISUP grade 5
CAT scan and MRI scan: tumor diameter 3,5x2cm, no visible metastasis in other organs
Bone scan: waiting for results
Treatment (so far and proposed next steps):
Prescribed Omnic Ocas 0,4 (tamsulosini hydrochloridum), APO-FLUTAM 250mg for one week followed by injection of Dipherleine SR 11,25mg.
Doctor suggested performing radical prostatectomy within next 2-3 months by keyhole surgery and then following it by radiotherapy treatment. He highlighted that the surgery would be performed by an experienced surgeon but nothing is really sure till the surgery happens and “they actually see what’s inside". Due to the size, complexity of placement of the tumor – there is quite high risk of urinary incontinence and also risk of proctectomy and creating a stoma if they see that the rectum has been also affected by the cancer.
As an alternative – we are also strongly considering Da Vinci surgery in private clinic. We will be consulting with them in January. We are not sure though whether it has significant benefits compared to the keyhole surgery. We are also concerned how the follow-up treatment would look given that it's a private clinic (located in another city and expensive vs. free & continuous treatment by the same doctors in the city we are located in).
Again, thank you in advance for any tips or experience you might share with us. I wish you all happy holidays!
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Aneiaaa
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Sorry to hear that your father has prostate cancer at this young age. I like your" head on" decision to accumulate all knowledge about this disease. It empowers you and your father
to make good choices about treatment and life style changes.
We need more data to suggest anything. Scan results are very important as then only we will know if the cancer metastatic or localised. Thats a crucial fact to know because treatment is different for these two stages. Welcome to this forum. There are many very knowledgeable people here who can provide good information. Best wishes.
Yes, I realize there is a big difference between metastatic or localized cancer. Bone scan results are the last results we are waiting for at the moment. I am worried because he complains about low back pain from time to time which could be a symptom. On the other hand, CAT scan showed some minor degenerative changes so maybe that's the cause, not necessary bone metastases. Hopefully next week we will finally have the results and know more.
I am really glad to find this community. Unfortunately, my father doesn't speak English so he cannot participate directly, but I already shared with him some of the information/stories I found here and I think it really helps him to feel like he's not alone. He's always been a very active person with a "can do" approach. I can see how worried he is and how the diagnosis affected him but at the same time I am really glad that his attitude didn't change and he's already focusing on lifestyle changes like diet and exercise and on learning as much as he can to take informed decisions about what to do next.
Aches and pains and much more weirdness will come .. it will take time to recovery from any treatment .. if it hasn’t left the prostate than curative is possible . But the nature of pc is to regress in time .For him to daily walk or exercise will help mentally and physically ...
If surgery is the choice you have made then the most important factor is the experience of the surgeon. How many prostatectomy procedures does the surgeon do each year? How successful have the procedures been? Are side effects (incontinence and erectile dysfunction) minimized?
The Davinci machines give the surgeon more tools and control during the operation. It is very delicate surgery. You can search Youtube for videos of what the surgeon sees. It is quite amazing actually.
Hi, thank you for your answer. The way it was explained to us - it seems like surgery is the best approach.
Both specialist we are considering are highly experienced urological surgeons. We will be consulting with both of them early January and will need to decide then how to proceed.
I had GS 4+4=8 at biopsy but ended 4+5=9 after surgery. I have low PSA 7 months after surgery. My tumor was big enough, I don't have the number now, but no ECE. Yet, pT3b from unilateral SVI. Do not panic and do NOT take hasty decisions. It took me 5 months to decide. Good luck. PS I also live in Europe and short listed two places in Germany and Belgium with high level of expertise.
Hi justfor, thank you very much for your feedback and kind words. If you don't mind me asking - what kind of surgery did you have (Da Vinci, Key Hole, Open Surgery)? How was the recovery?
DaVinci, I do not now of any keyhole type. I gather you are referring to laparoscopic. I had bad luck with anastomosis having to bear the catheter for one month. With continence I had better luck. My next room Polish gentleman is still fully incontinent. Such things may happen. I would recommend to have a PSMA PET CT after finding a doctor that knows how to interpret any findings. The majory of them do not know and will try to desuade you. Mine did, I.e. told me that it is waste of money. The low PSA of your father, if not in error, may indicate another kind of malignancy that deems different treatment.
• in reply to
I looked at the numbers of your father's lesion and compared them with mine.
You wrote "tumor diameter 3,5x2cm".
Obviously, not a cylinder in shape.
For a first order approximation I would assume it has the shape of an ellipsoid, assumption that leads to a volume of ~12,8 cc.
Taking as control my mpMRI, my lesion's volume was estimated as 4,27cc, with a max. dimension of 2,6cm.
Now, 3,5/2,6 raised to the 3rd x 4,27 cc = 10,4 cc, in good agreement with previously estimated 12,8cc.
Now the important things:
My pathology (examination of the removed prostate) found max. tumour diameter of 4,6 cm and a volume of ~10,5 cc.
So, at this point you may think that MRI underestimates things.
Please don't do it until you read the next sentence.
mpMRI estimated my entire prostate volume as 59,5 cc, pathology measured it (an easy and accurate thing to do when you have the prostate on the bench) as 33 gr and 35 cc.
I wrote all this in order to convey to you the following message:
Do NOT be intimidated by numbers that originate from imaging.
They can be wrong, very wrong, up and beyond 100% EITHER WAY.
Disclaimer: I am an engineer and have a far better understanding of measurements compared to the average medical professional.
My Urologist was at MUSC in Charleston, SC and his wife is a
Radiologist at MUSC. I inquired early on if imaging was of much value in PC. He chuckled and said that’s a common conversation he has with his wife. They did not do any imaging of the gland prior to surgery. Did however do CT scan of major organs and full body bone scan.
Thank you very much for your detailed answer. I really appreciate it.
It's interesting you say that key hole is too new. My understanding is that Da Vinci is the newest & most advanced option, followed by key hole surgery with open surgery being "the last resort". Da Vinci is also not covered by insurance in my country yet while key hole surgery has been for quite some time.
As per the timing - we were told that while it is urgent it is better to wait ~2 months with the surgery due to the tumor size. My father was given Dipherleine SR 11,25mg injection today that lasts 3 months. The suggested plan is to wait ~2months to see if there is any size decrease after injection and perform the surgery then. Is it unusual?
We will be consulting Da Vinci surgeon early January to hear his approach and treatment plan as well.
When it comes to PSA levels and post-surgery monitoring: my father's levels are already low which combined with high Gleason seems to indicate more aggressive type of cancer. I wonder if Post PSA in such case is a reliable way of monitoring? Will it make it more difficult to detect potential cancer spread after the surgery?
Hi Nalakrats, I am not trying to argue with you at all. As I said, I actually find your feedback really interesting given that it's a completely different perspective to what we heard so far and I appreciate that. As I said in my initial post, all this is completely new to me and I am trying to gather as much info as I can, while we wait for final test results and next medical consultations.
As per low PSA, we were told by the doctor that in his experience low PSA combined with high gleason & large tumor usually indicates more aggressive type of cancer. When you mentioned tests after the surgery and Post PSA it was just another question/doubt that came to my mind.
I can`t advise you whether open surgery or the da vinci method is better for you. However, if you decide on da vinci. However, if you decide on da vinci, it`s worth getting to know the method called "smart" (Dr P.S.) and
the second method called "collar" (Dr P. Wisz). I think you have contact with these doctors? It is also worth consulting a good specialist for open surgery. e.g. Dr. Siekiera.
We indeed have an appointment with Dr. Salwa who uses the "smart" method early January. If we decide to go with Da Vinci route we will likely check with Dr. Wisz as well.
Also a retired Biotechnology Research Engineer in Immunocytometry, developing Reagents and Monoclonal Antibodies used in many of today's Immunotheraphy drugs.., I'm a recipient of this technology..I can tell you this...High grade PC with a low PSA can be indicative of small cell Neuroendocrine differentiation NEPC and does not typically respond to Conventional forms of treatment as in my case...I had prostadectomy done not typical for metastatic disease, but considered "Mothership" and needed evaluation...Genomic Sequencing determined Adenocarcinoma with a strong NEPC component that was a match for Checkpoint inhibitors immunotheraphy......47 infusions over 4 yrs and im now in Complete Clinical Remission NED..be very thorough in your testing and Research this disease to be your own best advocate to make the best decision on treatments..God Bless.
There are trials testing this. However, most patients do not want to be randomized but just get surgery done so accrual is very slow for these trials. The G-RAMPP trial got 131 patients but I guess the participating clinics did more than twice as many surgeries outside of the trial.
At the APCCC 2019 conference there was a presentation discussing surgery when there are bone mets:
(1) "Keyhole" surgery - laparoscopic - is just a manual way to do robotic surgery (Da Vinci). All kinds of surgery (open, laparoscopic or robotic) give similar results if the surgeon is well-experienced.
(2) His best option, given his current diagnosis, does not involve surgery at all. At the top institutions in the US, the best results are reported for a combination of hormone therapy (which he is already getting) + external beam radiation to the whole pelvis + a boost using brachytherapy to just the prostate itself.
To get this kind of therapy, you would have to visit a doctor who specializes in brachytherapy.
(3) His very low PSA (1.66 ng/ml) [in the US, we use the decimal point instead of the comma] is concerning. I assume that is before he started taking the APO-FLUTAM and the Dipherleine SR? Let us know what the bone scan says. If possible, get a PET scan for him.
I’ve read your blogspot Re ‘the best option’, but that seems to be only for those without metastases. Can I ask what is your opinion or knowledge of the wisdom of having this done if you already have metastases? No MO has suggested doing this, but it is something I’ve been wondering about for some time. Do you think there could be value in it?
However, some oncologists like to treat or remove the prostate anyway to prevent urological symptoms down the line. This kind of preventative is a very reasonable thing to do, but you wouldn't need to have to go through brachy boost therapy, maybe just SBRT (5 treatments) to the prostate.
I have to say, once again I am astounded by the heart and generosity I see here, you're just what someone in Aneiaaa's position needs - knowledge, experience, informed opinions, ideas, suggestions, open and more than willing to help because you know what it's like - that's empathy, and you guys have it in spades. Color me impressed. Again.
The first thing I noticed is that the Total PSA level1,660 ng/ml as this is so high that most likely there is a metastasis even if it is not shown in the CT scan or MRI (at least micrometastasis).
The next thing is Gleason score 9 (4+5) it is the same score that I had 2 years ago 2017 at diagnosis, and it is aggressive with a high possibility of metastasis at the time of diagnosis
The approach should be aggressive, and although my PSA reached 18 ng/mL before surgery, the chance of recurrence was high with G score 9.
I agree with Nalakrats do surgery first and get the result of pathology and the extension of the tumor with grading.
Urinary incontinence should not be a big problem with Robotic Radical prostatectomy (Da Vinci). Ask the surgeon if he can remove as much as he can of regional/local lymph nods and if he is skilled there should be no Lymphedema after surgery.
My surgeon removed 63 lymph nodes all were clean (they dissect the first 2-3 lymph nodes in the operation room and check for metastasis).
Next is Radiation to the prostate bed with or without pelvic area, to ensure all cancer cells are treated/removed.
Some oncologists add Lupron / Firmagon monthly injections for 6 months or longer with the radiation therapy (I had 6 monthly injections of Firmagon).
I did all the above steps so this is my 2 years experience.
I wish you all the best and good luck to your dad.
she's in Europe, where they use commas instead of periods to indicate decimal points, so 1,660 in European translates to 1.660 in American - it's a conscious and often successful effort to confuse us ;-}
Was living in Europe and returned to States for business. During check up diagnosed with prostate cancer group 5 aggressive Gleason 9 PSA 11.6
My Christmas present.
Will have CAT and Bone scan on Jan 4. MRI Jan 9 expect results and game plan about Jan 16.
According to Oncologist first choice is surgery. I am 76 and they prefer not to do surgery over 70 so option two is radiation and hormone therapy. Final decisions yet to be made as do not have all the facts. But when I do I will post and hopefully they will be of benefit to you as your information may be of benefit to me.
Curious about treatment course and options available in Europe as I may hope to follow treatment there. Been advised by family members there to remain here. Your thoughts?
I am confident that I cannot add to the wisdom of the 29 who have already replied. All of the treatments proposed to you are effective and equally effective. Radical prostatectomy is the same whether done as "open "keyhole" or robotically. Advantage of robotic is fewer days in the hospital. With either method (or with radiation) some incontinence is expected as loss of penis erection. How lucky is he to have you on his team!
Good morning and sorry for the news about your father. I have been fighting grade 5 cancer for 4 years and still trying to figure it all out. I just wanted to let you know I also had robotic surgery in the beginning at Cleveland Clinic in Cleveland, Ohio USA. I think I would do it again. I was just 54 when I was told about the cancer and still had high hopes of being with my wife for many years. They where able to save a large portion of the nerves that I wanted to save. Like I said I am still trying to figure out what works and I change things on a daily basis. I would look at the book How To Starve Cancer by Jane McLelland, Rick Simpson Oil and Joe Tibbs protocol. I really don't know if any of them work but they give me hope. God bless you and your family as you deal with this.
The fancy name for keyhole is laparoscopic. I think it's been around for a while.
Aneiaaa -- I am so sorry for your Dad, for you & all the family! You have come to the right place to learn of others' experience & their suggestions. The amount of information can be overwhelming, I am sure. But if you do not panic & try to evaluate it along with your research & what the doctors say, you will make the best decision(s) you can -- given what you know. That's all we can do in life. I wish your Dad as good an outcome as possible. And, finally, I add that your command of the English language is proficient!
Greetings Aneiaaa. Please do not panic.. If possible/practical get second opinions... If not then research as much as you can, also post here for great information. I had open surgery and agree with Nalakrats for best way to see what's going on with the prostate. I was in hospital on Friday afternoon and out Monday morning since I also had two hernias repaired at the same time and it was a breeze. Only issue is the Foley.... which your Dad will be wearing for a week or two... BTW where are you in Europe?... That helps us with helping you.
Let us please not take these side discussions into the reply thread of the inquirer. They are interesting perspectives but I fear might be confusing for the main inquirer here, even though I do appreciate hearing your respective perspectives.
Welcome to our very lively and enthusiastic (as you can see) forum. We are here to help each other and your father. Note that some did not understand that the PSA level was actually low 1.66 nm/ml as they are not used to the comma replacing the period. So this may have biased some of the opinions thinking it was 1660.
Certainly getting the bone scan results promptly will be important in decision making if it metastatic vs. non-metastatic.
Surgery (prostatectomy with lymph node biopsies) can provide important information about the status and extent of disease. And if he is non-metastatic it may have something like over 60% chance of actually being curative. That is very compelling. There are nomograms for estimating this here:
The experience of the surgeon is the most important factor in selecting a method and location for radical prostatectomy. The results are comparable in the most experienced hands. I would only choose a robotic assisted (RARP) surgeon who personally had at least 1,000 prior cases as surgeon (not assistant).
Consider carefully the alternative suggestion from our very knowledgeable contributor Tall_Allen above. It is true that the combination of External beam radiation (EBRT) to the whole pelvis combined with brachytherapy (radiation "seed" placement into the prostate has shown excellent results. But this requires a center and physician who is vey knowledgeable and experienced with brachytherapy.
Kindest regards to you and to your father. We here all know what a shock it is in the early days after diagnosis and decision-making especially.
I agree with our friend, Nalakrats. Aggressive Gleason score - I’d make a decision and schedule the surgery ASAP.
I had DaVinci surgery in July 2018 at MD Anderson (Dr. Louis Pisters - he’s amazing). Worked exceptionally well. Recovery was not too bad once you get the Foley catheter out. I was walking 3 miles a day starting 3 days after the surgery. (Just put the bag inside a shopping bag.) No incontinence issues. And, most importantly, no sign of cancer since.
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