mpMRI shows signs of contact with capsule ie. possible EPE
Prostate volume 21ml
As can be seen above there were discrepancies between the biopsies regarding prostate volume (33ml vs 21ml) but they were minimised as measurement variance.
The medical advice from the multidisciplinary team and from my urologist is robotic RP ASAP. He is really pushing this option saying that I should ideally have it done before the end of the month.
I am very reluctant to go down this route and would have been more interested in trying SBRT but I don’t think thats available where I am here in France.
Realistically I suppose I’m asking you all based on your combined extensive knowledge and experience, what options do I have and is it reasonable of me to insist on accessing SBRT or other firm of radiation treatment in the hope of more favourable QOL outcomes?
I am 42 years of age.
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Atlantic77
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The only French Radiation Oncologist I know of is Gilles Créhange, Department of Radiotherapy, Centre George-François Leclerc, Dijon, France. Maybe contact him and ask if he does SBRT, or if not, who does in France.
For a HDR brachytherapy expert, try Jean-Michel Hannoun-Lévi, Department of Radiation Oncology, Antoine Lacassagne Center, Nice, France; University of Nice Sophia-Antipolis, Nice, France.
On the question of whether you should get treatment now, I'm inclined to agree with your doctors. Age 42 seems very, very young to have a Gleason 3+4 cancer. That may mean that the cancer is more aggressive than in most men. However, it's still important to find the right treatment and it's worth spending a few extra weeks to get the best doctor and clinic.
I searched Google and found SFRO.org, the French Society for Radiation Oncology. I know nothing about them, but it may be a place where you can get more information about finding a radiation oncologist (RO).
I live in the United States and don't know how medical care is organized in France and don't know how to advise you on finding the best prostate cancer specialists. However I do believe that the choice of specialist makes a significant difference in the likelihood of a successful outcome. I think I might choose an excellent RO over an average surgeon, and an excellent surgeon over an average RO. Although the side effects are different for radiation and surgery, they can also be different between an excellent doctor and a mediocre one.
You are lucky that you were tested for prostate cancer at such a young age. In the U.S. it is now common not to screen patients until age 50, unless they have a family history of prostate cancer.
Ok thanks for that, I will look them up and see what they say.
I hear what you're saying about the importance of the competency and expertise of the practitioner whether it be in surgery or radiation.
I was initially found to have a high PSA in 2014 while undergoing blood tests for nutritional reasons and the PSA test was actually an accident, it was not asked for, so it was really a fortuitous detection of abnormal activity which eventually led to the diagnosis in 2018.
Otherwise it's the same here in France, patients are generally not screened until 50 years of age.
Definitely check out other options. Surgeons "push" surgery. Radiation docs push radiation. Find a medical oncologist who can advise without bias.
Given similar long term results for surgery vs. radiation, I opted for external beam, brachy-boost, and ADT. Of the 3 treatments, hormone "therapy" has been the most challenging...awful. However, RP seemed even more devastating to me.
And, yes, you are young and 3+4 is often the treatment "go" number. But, don't be pressured into treatment until you are ready for it. Your life WILL change.
Experienced members of these forums often recommend getting *expert* 2nd opinion w/r to biopsies - usually recommending Epstein at Johns Hopkins. You might consider seeing whether there is such an expert in France/Europe that you could contact.
You might want to research HIFU as an alternative to radiation. I believe this technology was developed in France so it should be available. BTW I chose HIFU rather than radiation 3 years ago.
I am 3 years post procedure. No quality of life issues whatsoever. PSA was undetectable after treatment. It has since ticked up to 0.6. The urologist isn't concerned. I am 69 years old. I know from this site that HIFU is available in Germany. I'm surprised it wouldn't be available in France.
Comparing RP with RT, there are no substantial differences in QoL. Problems with continence and erection with RT happens also, only later after the treatment rather than immediately after RP. He certainly met the initial criteria for Active Surveillance, but his relative youthfulness suggests a more aggressive tumor.
My husband is 3+4 and 54 and doing AS for 6 months now. He has radically changed his diet to a plant based one and his PSA has dropped from 10.5 to 6.5. PCa responds well to diet. When he treats he is looking toward FLA or Proton. I don’t know if you have access to proton therapy but I encourage you to look at it and to try the plant based diet. My husband is refusing surgery because of the side effects.
I can understand your husband refusing surgery, its a tough decision whatever way you go. It just seems preferable to try one of the more recent forms of radiotherapy ( SBRT or proton) if possible.
I also am on mostly a whole foods plant based diet for the last few years, although I do treat myself now and again.
PSA decreasing is not, however, a sign of tumor regression or stabilisation to the best of my knowledge..I also have fluctuations in PSA levels which is due to chronic prostatitis unrelated to the cancer.
I am aware, but he has also recently had a 3T MRI to check on his lesion. A few months ago his PSA was climbing rapidly, now it’s not, so for now we are comfortable with AS.
"Take a deep breath and slow down". Next find a Medical Oncologist for his/her opinion... As far as surgery is concerned tell that oncologist and the team to "take a deep breath and slow down"...
Their reasoning behind pushing for treatment asap is the fact that on the mpMRI the tumor appears to be attempting to push through the prostate capsule which would, if this happened, be classed as extraprostatic extension EPE and move the tumor to stage 3 and possible metastasis.
I had surgery which was easy, I had cone beam 36 weeks of radiation, also easy, and have been on ADT for two years. I recently started a trial at MD Anderson about a year ago and seems to be working. I’m stage four aggressive. My blood tests are coming back great, my psa is 0, from high of 6.6. The general medical consensus is radical prostatectomy if your high risk. It was explained to me by several doctors surgery is preferred first over radiation because the later tends to make mush of prostate and sometimes can make surgery impossible. Everyone here has a different viewpoint and different situation but can be very confusing. I got four different opinions 1) urologist ( pushed HIFU treatment)2) medical oncologist/urologist different hospital and well known robotic surgeon 3)medical oncologist/ another hospital and 4 )radiology/oncology. I went with with surgery first then radiation, then transferred to MD Anderson and started trial. I was very happy with all my decisions and not afraid to switch hospitals mid treatment. Best advice was to slow down and get different medical opinions. And yes they do push there specialty ex surgery ex HIFU. So look at side effects weigh your opinions, and make a decision. Don’t wait to long but don’t rush more importantly. There are a lot of guys also that base their choice loss of erection, or frequency of urination etc. it’s your life we’re talking about so to me that’s a no brainer. God Bless you
Glad to hear your blood tests are coming back negative.. may it continue.. I think the urgency in my case is due to the possible EPE.
You are currently focusing on the possibility of EPE due to MRI.
EPE has 2 nasty "siblings", which run bellow the MRI radar, namely the involvement of lymph nodes (LN) and seminal vesicles (SV). Nomograms give single digit % probabilities for either of them at your estimated 3+4 GS. In medicine anything having +90% probability is treated as a certainty. The problem is what happens to those that make up the remaining 10%.
If you finally go for SBRT, there are 3 options:
a) Irradiate with pencil beam accuracy the prostate only, +/- short term ADT
b) As in a) but with an additional broad range (IMRT) irradiation of the neighboring areas, +/- short term ADT
c) Get a PSMA PET/CT first to compare/enhance the MRI findings regarding LN and SV and possibly add to b) SBRT to detected spots outside the prostate, +/- short term ADT
Disclaimer: I am an engineer by profession, thus avoid giving you any sort of medical advice. Blanket statement: "Bring it up with your doctor"
I can only offer some thoughts of mine that occurred to me during my own course.
Irradiation to human tissue is additive and it has limits (fact).
So, like if you had a fixed budget for some construction project you would had to plan from the begining its break-down to the necessary works, or it could end semi-finished, the same principle shall prevail to the use of radiation doses.
Option a) is try and see. Zap the prostate now and keep something (but not much) for any left-overs for a later day.
Option b) is according to the book. If you are lucky, you get best results. If not, "Sorry we missed it".
Option c) is a better flavour of option b), but not 100% foolproof.
Common wisdom has it that men younger than 60 fare better starting with RP.
I drove crazy some urologist telling him that after extensive research on all forms of RT, I opted for RP because it is a more accurate biopsy, yet very expensive not that much money-wise but in QoL. He stood up and started yelling at me: "It's not a biopsy, it IS cure."
Yes, I stepped in with T2b and left with T3b (and I am 70y, not 42y like you).
My message: Do NOT put all your eggs in one basket.
Ok so it looks like I may be able to access SBRT if I categorically refuse surgery.
However, two ROs and two surgeons so far have said that in the case of failure, options become much more limited in the case of recurrence or LN or SV involvement after RT as opposed to RP. This does not seem to be the case yet from biopsy TRUS images/samples.
Just to remind you:
Gleason 3+4=7
7mm with signs of possible capsule contact (not yet extracapsular)
Nothing to add to the above except my good wishes and experience. I had RP and don't regret it (cancer gone, for now) but also incontinent and impotent (had ED going in) which I don't blame the surgeon for, and can live with. I was 71 -- now 74 -- however, and you're 42. Different stakes. Don'really know what I would have done at that age. You're doing the right thing, consulting others. You'll find the right way to go.
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