Treatment options?: Hi all, Initial... - Prostate Cancer N...

Prostate Cancer Network

3,274 members1,855 posts

Treatment options?

Atlantic77 profile image

Hi all,

Initial diagnosis:

Oct 2018

Gleason 3+3=6

1 core out of 12

5mm T1c

PSA 6,6

DRE no sign of tumor

Prostate volume 33ml

I was put on AS

I saw my urologist today and got my confirmatory biopsy results (took place on 13 Sept 2019):

PSA 5,7

Transperineal Koelis MRI fusion targeted biopsy 4 cores (2 positive)

Gleason 3+4=7 (Gleason 4 = 30%)

Location: Right apex

Size = 7mm

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.

30 Replies

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.

Ok I will get in contact with them and see what's on offer. Greatly appreciate the swift reply and contact details Tall_Allen, thank you.

AlanMeyer profile image
AlanMeyerModerator

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.

Bon chance.

Alan

Atlantic77 profile image
Atlantic77 in reply to AlanMeyer

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.

Good luck to you.

EdinBaltimore

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.

Atlantic77 profile image
Atlantic77 in reply to WSOPeddie

HIFU is not yet available here as treatment for prostate cancer as far as I could see.

How did it go for you?

WSOPeddie profile image
WSOPeddie in reply to Atlantic77

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.

Atlantic77 profile image
Atlantic77 in reply to WSOPeddie

Glad to hear it went well for you. I'll keep an eye out for HIFU, although I'm focusing on SBRT at the moment.

WSOPeddie profile image
WSOPeddie in reply to Atlantic77

OK, I found this.

medifrancesolution.com/blog...

Good luck with whatever treatment option you choose.

spm58 profile image
spm58 in reply to Atlantic77

It is performed here in US but insurance may not cover it

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.

Atlantic77 profile image
Atlantic77 in reply to RunnerGrl

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.

RunnerGrl profile image
RunnerGrl in reply to Atlantic77

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.

Atlantic77 profile image
Atlantic77 in reply to RunnerGrl

Good to hear, I hope he can stay on AS for as long as possible.

"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"...

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 10/31/2019 6:33 PM DST

Atlantic77 profile image
Atlantic77 in reply to j-o-h-n

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.

j-o-h-n profile image
j-o-h-n in reply to Atlantic77

Can you get a second opinion ASAP? (Medical Oncologist that specializes in Pca).

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 10/31/2019 6:56 PM DST

I am actively trying to get an appointment with radiation oncologists who do SBRT. I'll keep you posted.

Hello Atlantic,

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

Atlantic77 profile image
Atlantic77 in reply to spm58

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

Atlantic77 profile image
Atlantic77 in reply to

Do you mean specifically target and irradiate the tumor or irradiate the whole prostate?

Thanks for that detail, I was'nt aware of possible LN and SV. If that turns out to be positive would there be any justification in a RP?

in reply to Atlantic77

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.

PS: Try to run your data to this nomogram:

mskcc.org/nomograms/prostat...

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)

Right apex

42 years old

I get the impression I need to act very soon.

Any thoughts?

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.

I would check out Tulsa Pro or HDR-BT mono-treatment at stage T2. You are too young to risk lifetime IC and ED from RP, IMO.

You may also like...