New diagnosis - would like some input

hopeful and optimistic

Suggest that you bring a copy

Suggest that you bring a copy of all your medical records pertaining to the prostate cancer to the consult.Contact all medical providers for these records. You paid for them and the providers must share a copy of all medical tests and notes pertaining to your situation

jarvis55

In favor of prostatectomy

From my researches, prostatectomy had better chances of succeeding in the long run (being cancer free) than radiation. I wanted to be able to tell if my PSA had gone down after the surgery, just for my peace of mind, because I was in a really anxious state. From the talks with my surgeon, the side effects were going to dissipate in the long run (after 18 months) and pretty much, that's what happened. I'm now cancer free for 4 years, with a pretty good love life (it requires a bit more work, though) and almost no problems with the continence. My PSA level is around 2 now and my doctor said it's normal. I also suggest you research more about prostatectomy. This study has helped me a lot: https://www.ncbi.nlm.nih.gov/pubmed/26700655 

 

SubDenis

You may want to look into HDR

You may want to look into HDR Brachytherapy.  

fishinguy

jarvis55 said:

In favor of prostatectomy

From my researches, prostatectomy had better chances of succeeding in the long run (being cancer free) than radiation. I wanted to be able to tell if my PSA had gone down after the surgery, just for my peace of mind, because I was in a really anxious state. From the talks with my surgeon, the side effects were going to dissipate in the long run (after 18 months) and pretty much, that's what happened. I'm now cancer free for 4 years, with a pretty good love life (it requires a bit more work, though) and almost no problems with the continence. My PSA level is around 2 now and my doctor said it's normal. I also suggest you research more about prostatectomy. This study has helped me a lot: https://www.ncbi.nlm.nih.gov/pubmed/26700655 

 

2?

I don't want to hijack the thread, but Jarvis, but is that correct your PSA is 2 and your doctor says this is normal??  Or was the 2 a typo??  That just doesn'r seem right to me.

jeneric82

SubDenis said:

You may want to look into HDR

You may want to look into HDR Brachytherapy.  

considering

Yes, I am already considering that. However the onco told me that no matter what type of brachytherapy I consider, I will have to have 6 to 9 months of Hormone Therapy to shrink the prostate enough to do the procedure. That is what I am having a difficult time deciding if I want to proceed with. If I could just do the brachytherapy tomorrow, based on what I have read so far and results that I've seen, I likely would.  Thanks for the reply.

ASAdvocate

jeneric82 said:

considering

Yes, I am already considering that. However the onco told me that no matter what type of brachytherapy I consider, I will have to have 6 to 9 months of Hormone Therapy to shrink the prostate enough to do the procedure. That is what I am having a difficult time deciding if I want to proceed with. If I could just do the brachytherapy tomorrow, based on what I have read so far and results that I've seen, I likely would.  Thanks for the reply.

Your onco was wrong

Prostate size does not matter in HDR bracytherapy. You seem to be getting bad advice from "experts" who are mis-informed about other specialisties.

https://www.ncbi.nlm.nih.gov/pubmed/23849693

 

Max Former Hodgkins Stage 3

fishinguy said:

2?

I don't want to hijack the thread, but Jarvis, but is that correct your PSA is 2 and your doctor says this is normal??  Or was the 2 a typo??  That just doesn'r seem right to me.

Agree with fishing

Jarvis,

I am a "DaVinci guy" also, and similiar to you, had wonderful results.  And one thing I like as you describe is that PSA results are definitive, so we know immediately what is happening, unlike drifing around a nadir, post-radiation.  This is NOT a putdown of post-radiation tracking; I am just saying that the time taken to make determinations is less suited for some men's personality types.

But as fishingguy noted, a 2.0 PSA long after surgery is WAAAYY not normal.  I also suspect a typo, and hope it was indeed a typo,

max

jeneric82

ASAdvocate said:

Your onco was wrong

Prostate size does not matter in HDR bracytherapy. You seem to be getting bad advice from "experts" who are mis-informed about other specialisties.

https://www.ncbi.nlm.nih.gov/pubmed/23849693

 

prostate size

Much of the reading I have done say that even with the HDR Brachy, treatment is much more effective if swelling/size of the prostate is reduced by HT pre procedure. I did see the study that you linked durin my research. My onco is a specialist with a lot of experience in HDR. I emailed him regarding the HDR before, and he said that I am a candidate but it definitely would not be considered standard for low risk and I would still need to have the HT to improve results. Evidently, the insertions that need to be made to deliver the radioactive material would be impeded by the pubic arch if it is too enlarged. At least that is how it was explained to me. 

willie49

similar situation

Hi,

Appears we are in a similar situation.  I was diagnosed December 5th with prostate cancer.  Of 12 cores, 6 were positive for cancer at 10% and 30% in one sample.  Gleason 6.  My apppointment with the radiation oncologist is Jan. 22nd and Surgeon on the 24th.  My PSA has risen from 4 - 10 in just 11 months.  I have done extensive research on options and given my age of 50, I am opting for surgery.  The rapid increase in PSA is suggestive of potential aggressiveness so while I am healhy, I want to have the surgery and be rid of it as should I choose radiation, surgery is not an option if it returns.

jeneric82

willie49 said:

similar situation

Hi,

Appears we are in a similar situation.  I was diagnosed December 5th with prostate cancer.  Of 12 cores, 6 were positive for cancer at 10% and 30% in one sample.  Gleason 6.  My apppointment with the radiation oncologist is Jan. 22nd and Surgeon on the 24th.  My PSA has risen from 4 - 10 in just 11 months.  I have done extensive research on options and given my age of 50, I am opting for surgery.  The rapid increase in PSA is suggestive of potential aggressiveness so while I am healhy, I want to have the surgery and be rid of it as should I choose radiation, surgery is not an option if it returns.

agreed

Hi Willie,

I agree. I think if my PSA rise had been that significant in that short of a time I may have chosen surgery as well. That option is still appealing in the respect that I would like to just have it over with, but in my personal case, the possible risks of long term side effects versus the opinion that it is not an aggressive type makes me lean towards some sort of radiation treatment. My doctor is recommending VMAT with cone-beam CT IGRT.  Active Surveillance is creeping back into my thought process, but I'm not sure that I or my family can stand the stress of knowing it's there and not doing anything about it. The only thing that has caused me to hesitate with the radiation therapy is taking the future option of removal off of the table, at least for the most part. I assume you are having the DaVinci? I've read a lot of promising things about that over the past 5 days. One of the most frustrating parts in the decision making process for me has been there is very little information out there regarding long term prognosis/side effects on those younger than 60-65. I realize that it is likely better due to less age, but lack of solid evidence is still a little disconcerting.  I wish you all the best in your process and recovery!  

VascodaGama

Still missing information for a final clinical stage

Eric,

Apart from the researches you did yourself; you have received very good opinions from the survivors above. This is a good start to confront the situation. In your shoes I would try to get more precise details for the cause of the size of the prostate. Your doctors suspect/believe in BPH but the pathologist report may have identified those “… other areas that were abnormal, but not cancerous”. Is it calculi?
I also think that no matter how experienced the finger of an urologist may be, it would never give a due volumetric size of the gland. A CT scan or MRI or color Doppler can provide a better dimension of the gland.

You comment him saying “… that my prostate was too large (roughly 60+)”, but in which direction? Is it towards the base or apex?

Large prostates do not present restrictions in open surgeries but it may condition the benefit of a dissection done by robot (DaVinci). In many robot cases the large size requires dissecting the prostate in pieces which is not the optimal principle of any type of surgery.
Radiation is also planned to prevent damage in healthy tissues close to the margin and at far places/organs in the path of the rays. Isodose planning in external radiation modalities becomes difficult when trying to cover distorted areas of the gland. Radiation from within (bracky) wouldn’t have this problem but if the apex extends along the rectum, seeds or temporary rods at the area could lead to cases of colitis. At the base it could lead to problems in the bladder or still worse at the sphincter.

I think that the high PSA justifies a more detailed investigation of your case. Gleason 6 is good but three cores out of twelve (low %) in such rate do not clearly justify a PSA of 10. Is there more cancer not detected? What about the possibility of existing micrometastases?
The constant increases of the PSA along 5 years you describe above seem to correlate with cancer issues. BPH would provide a graph of sharp ups and downs.

Can you provide copies of the reports of image exams?

51 years old is a very young age to subject the many coming years of life living sort of handicapped. My lay opinion is that you should try to get the best with the lesser risks and side effects even if such doesn’t seem to be the best at first notice. You need to consider the consequences attached to therapies and chose the one most comfortable to you.

Best wishes and luck in your journey.

VGama

 

ASAdvocate

willie49 said:

similar situation

Hi,

Appears we are in a similar situation.  I was diagnosed December 5th with prostate cancer.  Of 12 cores, 6 were positive for cancer at 10% and 30% in one sample.  Gleason 6.  My apppointment with the radiation oncologist is Jan. 22nd and Surgeon on the 24th.  My PSA has risen from 4 - 10 in just 11 months.  I have done extensive research on options and given my age of 50, I am opting for surgery.  The rapid increase in PSA is suggestive of potential aggressiveness so while I am healhy, I want to have the surgery and be rid of it as should I choose radiation, surgery is not an option if it returns.

There are many treatments if Primary radiation fails

I keep hearing people post "You can't do surgery if primary radiation fails". Ok, but, so what?  That statement implies that you are out of luck, but fails to mention that there are several other proven salvage treatments for such cases. It seems that urologists use this misleading talking point, which is unfair to their patients.

https://pcnrv.blogspot.com/2017/09/focal-salvage-ablation-for-radio.html

 

 

 

 

Old Salt

willie49 said:

similar situation

Hi,

Appears we are in a similar situation.  I was diagnosed December 5th with prostate cancer.  Of 12 cores, 6 were positive for cancer at 10% and 30% in one sample.  Gleason 6.  My apppointment with the radiation oncologist is Jan. 22nd and Surgeon on the 24th.  My PSA has risen from 4 - 10 in just 11 months.  I have done extensive research on options and given my age of 50, I am opting for surgery.  The rapid increase in PSA is suggestive of potential aggressiveness so while I am healhy, I want to have the surgery and be rid of it as should I choose radiation, surgery is not an option if it returns.

Simply wrong

The statement  'I want to have the surgery and be rid of it as should I choose radiation, surgery is not an option if it returns.' seems to pop up a lot but it is MISLEADING, if not outright WRONG. There are many treatment options if radiation fails.

And note that if surgery fails (not uncommon) radiation is usually the next step.

jeneric82

3 areas

To address the other 3 areas in context:

Left Lat Base : Adenocarcinoma Gleason 6 (3+3) 1 of 4 cores involved. .06 cm in length. 2% tissue involved

Left Lat Mid : Adenocarcinoma Gleason 6 (3+3)  1 of 4 cores involved. .04 cm  in length 2% tissue involoved

Left Lat Apex: Benign

Left Base: Prostate Tissue with small focus of atypical glands suspicious for, but not diagnostic of , Carcinoma

Left Mid: Adenocarcinoma: Gleason 6 (3+3) 1 of 1 core involved. .07 cm in length. 5% tissue involoved

Left Apex : Benign

Right Base: Benign

Right Mid: Benign

Right Apex: Benign

Right Lateral Base: Benign

Right Lateral Mid: Benign

Right Lateral Apex: High Grade Prostatic Intraepithelial Neoplasia (HGPIN)

 

My previous ultrasound and MRI had indicated the size (at this time I do not recall the exact number and have not yet gotten my own copy of the results). The oncologist just did an DRE and said that he could not get his finger around the top well enough  (trust me, he tried) so he knew from experience that it was definitely 60+, making it too large for any brachytherapy until it we could get it down to within pubic arch margins.

The BPH was suspected along this process due to the steady progression of my PSA but no findings in DRE, previous MRIs, and previous biopsy that came back with no positives or suspicous tissue. I also had a drop in PSA during this time, but it progressed again after that. The BPH was never officially diagnosed, however in my conversations with my PCP and Uro, it was informally offered as their opinion. Until 6 months ago, I had never presented with any urological symptoms at all, other than some frequent urination but that was not really out of the ordinary due to my drinking a lot of water in the summer here in AZ. 

I will see if I can get the image exam results. I have had a lot of issues with my urologist's records portal, so I may have to request them directly. I have a second opinion process started with Banner MD Anderson here in Mesa, but don't know when that will happen yet.

jeneric82

Old Salt said:

Simply wrong

The statement  'I want to have the surgery and be rid of it as should I choose radiation, surgery is not an option if it returns.' seems to pop up a lot but it is MISLEADING, if not outright WRONG. There are many treatment options if radiation fails.

And note that if surgery fails (not uncommon) radiation is usually the next step.

misunderstanding

If it came across like that is what I was saying, then I apologize. I tried to word the response of my opinion carefully, but I'm sure my wife would agree that I do not always succeed.. I fully know through my reading that salvage surgeries can be performed, but that there are not nearly as many surgeons willing to do it as there are who work in the "virgin material". I also know that there are many treatments available if the first radiation therapy fails and didn't think I was indicating otherwise.

After speaking with my urologist, oncologist, family, others in my church who have been in similar situations, and all of you fine gentleman. I am reasonable confident in my decision to not undergo surgery. I know that this is not the correct decision for everyone, obviously. I still have to go through the scheduling with Banner MD Anderson here in Mesa for a second opinion on my options so I suppose I could have more info coming my way that could affect my position. i am mostly interested in learning of any alternative (proton treatment and others) treatments that they may offer that my radiology oncologist does not. 

VascodaGama

I pair my opinion with your doctors

From your info, I pair the opinions of your PCP and uro. I believe that hyperplasia is extensive (on the right lobe) and producing a large amount of the PSA. In any case you will always need the info from the MRI to discuss on the matter. The traditional hormonal drugs may be effective in reducing the gland's size if such is a cause of cancer. Hyperplasia is dealt with 5-ARIs such as Avodart or Finasteride. Here is a link on BPH;

https://patient.info/doctor/Benign-Prostatic-Hyperplasia

MD Anderson is a famous center of excellence treating prostate cancer. You should get copy of all tests and exams to show them (probably sending the data before the consultation). Surely you can ask for a second opinion later too. I congratulate the way you are processing your case. Do not rush into a decision without securing proper data in hand.

Best wishes,

VG

jarvis55

fishinguy said:

2?

I don't want to hijack the thread, but Jarvis, but is that correct your PSA is 2 and your doctor says this is normal??  Or was the 2 a typo??  That just doesn'r seem right to me.

typo

You're right, indeed, it was a typo. My PSA is much lower than that, at 0.01. Thanks for the concern! 

Steve1961

Max Former Hodgkins Stage 3 said:

Huh ?

I doubt that seeding nor Active Survellance are sound choices for you, given what you know thus far (prior to imaging).

You have reasonable evidence to suspect capsular escape, which would render IGRT delivery of radiation the most potentially curative response.  A PSA over 10 is objectively high, and your vector (doubling-rate) is significant.

SBRT is not at all "new," I have never read of a patient here having been told what your doctor told you regarding that form of treatment (SBRT was in use world-wide by around 1997).  It is among the best choices if the disease is still in the gland, but using it for wider delivery (tissues surrounding the gland) is still pretty new and does not have much track record in those cases; when there is escape known, IGRT is almost always the treatment of choice  -- better than SBRT or surgery.  Clinical trials are now underway for long-term effectiveness of SBRT against disease in the prostate bed area.

The ususal argument for SBRT over conformal radiation (IMRT, IGRT) is that it is "more convenient."  Five days of treatment verses 40.  I do not see myself how, over a lifetime, this is even meaningful or relevant. Many cancer treatments require being cut to pieces or chemotherapy over years....some chemo patients go into what is called ":maintenance," and teke chemo for life, often decades.  HT (hormonal treatments) agains PCa often last a lifetime.  But guys think reducing radiation time by a few weeks is meaningful ?  I do not get it.  Another argument is that SBRT is 'more precise' than IMRT.  But that is a straw man fallacy, because what they are really comparing is SBRT to older IMRT machines, not the newest IGRT machines, which in effect have achieved parity with SBRT; the parameters now virtually match.  I know this may sound like hair-splitting. The best a man can do is go to a premier treatment facility and get several opinions from the best doctors.

The director of Radiation Oncology at my teaching hospital told me that he preferred IGRT over SBRT all the time, for technical reasons, but not because it is 'Investigational,' because it isn't.  Our hospital does, and did then, have the newest SBRT machine available, so it was not an issue of him not having bought the device.  But his concerns were not over its 'newness.'  Sadly, insurance carriers are sometimes who defines 'investigational.'

max

escape why

just wondering why u would think prostrate escape...i mean 3 cores positive 2% 2% 5% gleason 7  DRE seemed clean ..is it because of the 10.5 Psa u would say that there may be possible  escape...from what everone is saying and from what i have read that stage 1 and even 2 very rarely  escapes the prostarte...just wondering about your statement thats all..i am going thru this as well....