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TomsNet
Posts: 3
Joined: May 2017

Hi all,

Found out two weeks ago I got Prostate cancer... still coming to grips with it.  All started about 7 years ago with a psa test as part of my annual doctor visit...  test came back with an 8 so my GP sent me to urologist who did an in office biopsy (never again awake)... but nothing found.  So they put me on monitoring.  Another year went by, psa went to 12 but no symptoms and dre always were small round and smooth.  Decided to do more extensive biopsy under anastesia and again came up clean.  back to monitoring.  Couple more years go by now PSA is at 22 so biopsy and MRI and again nothing.  They suggested some drugs to bring down the psa number but I didn't like the side affects of the drugs and it didn't sound like it was a cure for anything so opted not to do them.  Starting to call me the poster child for anti psa proponents.  Everyone seems puzzled.  Back to monitoring still no symptoms, small round and smooth prostate.  I'm only seeing my GP now and go in Feb for annual and get a psa of 35.  Doc says I need to go back to urologist.  Don't know why but I had a bad feeling about this one.  Another biopsy a few weeks ago found the cancer.   Appears to be high grade with gleason scores 5+4=9's and 4+3=7s.   I guess which number first means not so good.  Off to CT can and bone scans which both showed nothing.  CT didn't even show the prostate cancer and of course I still have no symptoms.  Urologist says because of my age (58) health (good) and the fact there's no sign it's spread beyond the prostate that the two treatment options that apply are surgery to remove or radiation combined with hormone thearopy.  His recommendation was to go for a cure and do the surgery.   From what I understand that if I do radiation,  should the cancer come back down the road that surgery would be very problematic as the radiation kind of cements everything in.  He's also said he can't do full nerve sparing because it's up in the apex(?).  His goal is to first get the cancer out, 2nd to save continance and if I'm fortuante he gets the trifecta and saves erections but that didn't sound like a high probability.   He also said it's possible depending on how close the cancer is to the edge that I may have to have radiation after surgery but won't know that until pathology report.   I'm going back to my GP tomorrow just to talk about all this and decide if I need to visit an radioligist or not for further conversation but in the mean time I do have surgery scheduled for mid June.  What am I missing?

TobyVT
Posts: 4
Joined: Nov 2016

Urologist always want to do surgery. You might ask if CyberKnife Surgery is an option. Am still able to have erection but leakage (urine) is an issue. It's only been four months since I completed the five days of radiation (no hormone therapy) so things may improve. The jury is still out as to what is the most effective treatment - surgery or radiation. So do your own homework. And don't do surgery unless you live in an urban area with the best hospitals in the nation. Ask your surgeon how many surgeries he's performed before you decide.

MEtoAZ
Posts: 37
Joined: Feb 2016

Urologists make their money doing surgeries and they are correct in that IF the cancer is contained in the prostate, then surgery will remove the cancer.  With your scores, that certainly cannot be guaranteed.  You are also young enough that you should recover from surgery well with minimal issues, ASSUMING that the surgeon is experienced - several hundred if not thousands of procedures required to become proficient.  The fact that he indicates nerve-sparing is unlikely is problematic and I would think you should check out radiation options as well as get a second opinion from another urologists.  Removing the cancer is priority, but other functions, quality of life, etc should be a factor post treatment.

That said, I was 52 when diagnosed and I opted for Cyberknife.  I was only Gleason 6(3+3) and 7 (3+4) so a different scenario but as I reviewed the potential pitfalls of surgery, Cyberknife seems the most appropriate treatment.  In my case, I also opted not to take hormones as the 1-2% increase in cure odds (which was already in mid-90s) didn't seem worth the side effects.  I am a year removed from Cyberknife and PSA was around .7 at last check and everything is working.  I do not know if you are a good candidate for Cyberknife or not at such a high Gleason score. 

Normally, you have a lot of time to figure out approaches but based on the numbers you reported, you should deal with this sooner than later. 

One final point regarding surgery after radiation, who cares?  The correct approach would be additional radiation as surgery at that point would be unlikely to catch everything anyway.  However, there ARE surgeons who will do that work, most urologists do not so I would not use that as a decision point.  I find it somewhat amusing that surgeons tell you to avoid radiation but then tell you that radiation is always the back-up method if surgery doesn't work, really?!  So, I can avoid the potential pitfalls of surgery and just go with radiation upfront?

Good luck with your treatment options, stay positive, you can beat this beast!

VascodaGama's picture
VascodaGama
Posts: 2988
Joined: Nov 2010

Tom,

I hope you get a second opinion on your case. I do not think that the urologist told you everything, but he only informs and guesses based on the data at his disposal. Urologists follow the AUA guidelines which recommend surgery when a patient was found with negative DRE and negative image studies. However, cases of Gleason score 9 with elevated PSA and negative DRE have high probabilities for not being contained. In other words, he is correct in saying that you most probably will need salvage radiation post surgery. Another aspect in your diagnosis is that you may have micrometastases which cases relate to high PSA (voluminous cancer) in a normal size prostate. Micrometastases have the characteristic of spreading into small colonies not forming a palpable tumour that could be detected by traditional image exams (the ones you have done).

You should be aware that treatments for PCa are not easy and involve risks and side effects that will change the way you live today. Any decision should have the intent at cure but include considerations for the quality of life. The side effects are also cumulative which means that two therapies (surgery plus radiation) will double the risks. Typically, surgery is the best choice when the cancer is whole contained in the gland (dissecting the gland will free us from the bandit), Localized cases not contained are better dealt with radiation. Radiation can treat the whole gland and include in its field of attack the tissues surrounding the prostate.
When the cancer is found at the base (the area just below the bladder), radiation can cause styrictures in the bladder walls or even damage the sphincter that controls urine.

From the above you do understand that locating the cancer is crutcal in the final decision. I would recommend you to discuss with your doctor on the possibility of having a MRI 3tesla done with a sophisticated choline base contrast agent (C11 or F18 choline). Or still better a PET scan using the 68Ga PSMA radiopharmaceutical. This test has been successful in detecting PCa and is available on trials free of charge. Here are the details;
https://clinicaltrials.gov/ct2/results?term=68ga+psma+pet&Search=Search

For the F18 choline PET you can read this link;

http://onlinelibrary.wiley.com/doi/10.1111/j.1617-0830.2010.01141.x/abstract

 

Best wishes and luck in your journey.

VGama

 

TomsNet
Posts: 3
Joined: May 2017

So I don't know if this helps but I called and got more detail on my biopsy's.  19 total cores, 6 came in positive, 2 were 5+4 60% located in the left apex,  3 were 4+3 25% in mid apex and 1 was 4+3 mid right 20%.

hopeful and opt...
Posts: 2224
Joined: Apr 2009

The definition from a CT scan many times does not show the cancer. A better test is an MRI using a T3 magnet.  That may show extracapsular extension, and suspicious lesions within the prostate.

Generally with aggressive cancer, the Cancer has escaped the prostate and radiation with hormone therapy is appropriate. The radiation can be controlled to extend beyond the prostate, so there may be a better chance of treating all of the cancer. 

Surgery is not likely to treat all of the cancer in your case and another treatment type will still be required. There are side effects from each treatment type, and they are cumulative.

Keep on asking TG questions, we are here for you.

H

PS In your case where there were signs of cancer that was excitant for several years it is likely that the cancer has excaped the prostate and surgery is not appropriate

VascodaGama's picture
VascodaGama
Posts: 2988
Joined: Nov 2010

Tom,

Please note that we are not doctors and that our exchanged comments are solo based on own experiences and researches, done along the years as survivors.

Surely your added info helps in understanding your condition. In any case a better image study is missing. So far you know that you got a very aggressive PCa (grades of 5 and 4) producing alot of PSA serum (35 ng/ml) occupying a large portion of the gland (Mid and Apex) and, according to (you describe above) your doctor's comments, a negative DRE (no palpable bumps). It seems that hyperplasia (another probable source of PSA serum) is not present for the normal sized gland.

All this information was passed to you by the surgeon that would not recommend radiation if surgery seems capable of accomplishing the job. A radiologist would as well recommend radiotherapy because it would perform equally. The only piece of info you share above that turns the whole discussion ambiguous is for  "... I may have to have radiation after surgery but won't know that until (he sees the) pathology report (analysis on the gland's specimen post RP)". In other words he surely knows about the high risk in your case for existing extraprostatic extensions. This can be accessed via a detail examination with better contrasts and techniques.

Several Gs9 guys here have chosen the "mother of all therapies" to assure cure disregarding the consequences. They started with surgery removing the whole gland, seminal vesicles and nerve bundles, followed, after local healing, with adjuvant combi therapy of radiation plus hormonal (as commented by the urologist). In such cases, surgery is not curative but done with debulking intent. This may lead to incontinence and ED issues. The radiation can cause proctitis and is most prohibitive if the patient has ulcerative colitis. One should get a colonoscopy in advance of a decision.

Nerve sparing technique in Gs9 cases is rare but possible if cancerous tissues are not identified where these run. However, the nerve bundle and seminal vesicles are typically the routes used by the bandit to escape. From there it will travel to close lymph nodes which condition is common in cases of high PSA levels. From your stats one could guess that the nerves are infested. I wonder if any of the 19 needles were directional to the nerves bundle. What is writen in the pathologist's report on the biopsy? Can you tell us which clinical stage has been attributed to your case?

Continue searching about therapies and their involved risks and consequences, while doing important tests (heart and bone health) before treatment (58 years old doesn't free one from other maladies even if one is asymtomatic). Get second opinions, discuss with your family (they are also affected) and decide when feeling comfortable with an option. Treat but do not rush. It is common to take two or three months of preparation while looking for an accommodated solution.

Best,

VGama

TomsNet
Posts: 3
Joined: May 2017

One side note to all this was my urologist made recommendations for treatment not to tell me which necessarily which to choose.  He's also offered to set up the visit to a radiologist.  But his opinion was with my circumstances the field of options were narrowed to two options being surgery or radiation.  He pretty much went over each option and why they would not be options and also that I didn't qualify for any protocols.   It is his belief the seminal vessels are fine based on the location of the positive cores but that because most was up in the apex that some nerves would have to come out with it since it's in that narrow section.    Meeting with my GP this morning to go over all this with him and see what his recommendations are for next steps and to see if a better picture can be done.

Clevelandguy
Posts: 441
Joined: Jun 2015

Hi,

Listen to your urologist & oncologist to get both side of the story.  Surgery & Radiation are the two major paths most people follow.  Study all the treaments and their side effects and they all  have side effects.  Surgery side effects are usually up front and get better over time while radiation is just the  opposite.  Each peson will vary with their recovery/symptoms based on how severe their "treatments " were so there is no one answer on how long it will take to recover.  Various medicines can help with ED recovery or urine leakage.  It's up to you & only you to decide which treatment method is best for your life.

Dave 3+4

hewhositsoncushions
Posts: 269
Joined: Mar 2017

I've just had that very conversation today about treatment and side effects. They were candid and up front (probably more pessimistic that reality due to CMA needs) and I know what I need to do. As Cleveland guy says, learn everything!

Good luck!

C

Old Salt
Posts: 720
Joined: Aug 2014

Amazing that your earlier biopsies (TomsNet) didn't find anything considering the high PSA values. The 'needle in a haystack' analogy certainly applied to those prostate biopsies, unfortunately. '

I noted that your cancer parameters are very similar to the ones my urologist found for me (several Gleason 9 lesions and some others, but my PSA was a bit lower; 12). AGGRESSIVE is the word!

The urologist told me I was too old for surgery (bless his heart) and recommended a 'triple play': brachytherapy + IMRT (44 sessions) + ADT (2 years). I have since learned that this combination is not at all unusual for cases such as yours and mine. In fact, it my be a 'standard' protocol (in the USA). The brachy can be done with 'permanent' seeds or with the 'High-Dose' version (typically two applications). The latter technique should really be done by someone who specializes in HD-brachy. (not too many in the USA, I believe).

After some further explorations and education I ended up doing a different 'triple play'. It was guided by a radiation oncologist: SBRT (3 sessions) + 20 sessions of IMRT + ADT (18 months). This approach is still 'experimental' but after umpteen years in biomedical research, I liked the approach, especially since the setting was in an academic hospital and the radiation oncologist had published several papers relevant to the course of action he proposed. The fact that this therapy was a lot shorter compared to the one proposed originally by the urologist also played a major role.

The SBRT was done with the CyberKnife system, but there is now at least one other company that has an instrument to do SBRT.

I don't want to make this too long, but feel free to ask for some detail. Most of my 'journey' took place three years ago and I believe that I survived... Moreover, the side effects were manageable.

Also, I personally don't care much for anecdotal reports such as the above. I clearly broke my own rule because our cases appear similar (except for the 'age' thing) and I thought it would be helpful to 'reach out'.

Good luck with the decision process.

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