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New diagnosis - would like some input

jeneric82
Posts: 18
Joined: Jan 2018

Hi Gentlemen! 

I'm 51 and was just diagnosed last week 1/4/18. I feel I'm very fortunate to only have 3 of 12 with Gleason 6 (3+3). There are a couple other areas that were abnormal, but not cancerous. My stage is considered T1c and PSA just recently topped at 10.6. I'm keeping an optimistic attitude about it since it seems to be early and I'm usually a pretty positive guy anyway.

Saw the Radiation Oncologist today and now have to decide between 2 treaments...the external beam radiation therapy or brachytherapy (seed implantation). Normally I think I would automatically go with seeds due to a lot of the information I have read. However, there is a wrinkle. He did a DRE today and based on previous measurements and, what I felt were abnormally long-and-pointy fingers, he felt that my prostate was too large (roughly 60+) to be a candidate for the seeds until being treated for 6 to 9 months of hormone therapy. At that time, IF it reduced enough, we could proceed with the implantation. If not, then the external beam would be used anyway.

The input I'm looking for is......have any of you undergone the hormone therapy (Testosterone/androgen blocking)? If so, how bad were the side effects and did it work in reducing the prostate enough?  It's tempting to just go with the external beam at this point because I only have 8 weeks of treatments and possible side effects and can get started right away. The other scenario involves me going through different side effects for 6 to 9 months even before the brachytherapy. The advantage being that the hormone therapy can actual kill off a decent portion of cancer cells as I'm going through it.  It just seems that 12-15 months of treatment vs. 2 months of treatment is a bit daunting, considering I don't know if the outcomes show to be much better.

I am completely aware that ultimately it is only my decision, but I feel the collective wisdom here is immense and would like to factor it in to my decision process.

I am a father of two young boys (ages 12 and 8) and also wonder if the hormone therapy side effects (mood swings) might not be something I want to deal with. Haha

I deeply appreciate any input from those of you who are currently and have previously wrestled with this disease.

 

Thanks again! Eric

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

Dear Eric,

I am sorry for your diagnosis. 

First, I wonder of the cores that were positive, what was the involvement, that is what percent of each core was positive?

Can you share your PSA history with us?....10.6 is fairly high.

Did the digital rectal exam reveal anything bumps or hard spots?

Did you have any other diagnostic tests, ie, image, FREE PSA, etc?

You may wish to have a second opinion of your biopsy pathology by a world class pathologist, since determining Gleason score is subject, and there is a difference among pathologist...Johns Hopkins is world class.....the pathology results is one of the critical diagnostic tests that your treatment is based on.

Hormone therapy will reduce the size of the prostate; brachytherapy cannot be done on larger prostates.....there are various types of seeds that are used permanent or temporary. The life of permanent seeds can affect small children.

With a high PSA there is a possibility that the cancer has escaped the prostate, so I strongly recommend that you obtain image tests.....I would start with a T3 MRI that may reveal if there is extracapsular extension......this test is very inportant before any treatment decision.

There is a radiation treatment called SBRT that only takes 4 or 5 sessions within two weeks, depending on the particular radiation oncologist, with similar results to 40 sessions of external beam.Others at this forum have successfully completed SBRT.

Here is information about SBRT.

https://prostatecancerinfolink.net/2016/01/06/nine-year-outcomes-after-treatment-with-sbrt/

Please feel free to ask questions. We are here for you.

 

jeneric82
Posts: 18
Joined: Jan 2018

No problem sharing at all. I'm sorry I don't have exact results and dates at the moment. My PSA has been being evaluated for about 5 years now. It was trending slowly upwards in the 4 and 5 range. Then up to 6s and 7s. Then a year ago it went to 8, at which point we did a biopsy, which came back negative in all areas. A few months later, the PSA was still trending positive so we did an MRI. The MRI showed one tiny area that did not seem suspicious and they said could have been scar tissue related to the biopsy. Then in October of this past year my PSA went to the current 10.6 from the previous 8.7.  At that point we did a repeat MRI, which now showed 2 small lesions where there was one before. That led to this current biopsy which was done in December.

All DRE's have been normal and unimpressive, except for being enlarged. Both my urologist and primary suspected BPH but wanted to keep a close eye on it. I was also asymptomatic throughout all of the PSA increases.

The 3 core samples that came pack positive were 2%, 2%, and 5%.

The oncologist kept telling me that I was a good candidate for a "Watch and Evaluate" treatment, but I honestly don't want to mess around at all with PC. I'm fairly young and healthy and feel I could tolerate treament much better at this point than later.  As I said, I think if it wasn't for needing the Hormone Therapy to reduce the size before getting the brachytherapy, I would be leaning towards that treatment much more.

I asked him about the SBRT and he indicated that I could pursue that route through another provider, but he personally didn't feel there was enough long term stats and testing done to evaluate it fairly for results against the others. He said that many of those providers doing SBRT in this area are doing so as clinical trials. As a result, many insurance companies view it as "investigational" and may not cover it. I did not verify that with my provider though.

Thanks for the support and information.  

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3295
Joined: May 2012

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

jeneric82
Posts: 18
Joined: Jan 2018

Sounds like I may have to get a second opinion anyway. Regarding the SBRT, in the fog of the nervousness I had in our appointment, I may have misinterpreted what he said slightly. I asked my wife, who was with me, and she did say that he said it was considered non-standard and insurance may not pay for it, so I think you are completely correct when you said that sadly insurance carriers incorrectly label things investigational. I have run into that before and had a knock down-drag out fight with Blue Cross over it. I won, by the way. lol   He did say that it is in clinical trials and that I would probably not qualify due to my younger age.  

Both my uro and now oncologist are both reasonably assured that everything is still contained based on imaging and the low risk scores, with the exception of the PSA, which is admittedly low end of intermediate risk. 

I was considering a second opinion anyway, but after hearing from you as well as Hopeful and Optimistic I am even more resolved to do so.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3295
Joined: May 2012

Something as serious as any cancer demands a second opinion, preferably at a different hospital from where you were initially seen.  Coworkers have some tendency to just sign off on what the other guy said, out of deference.  I am not saying they lack integrity, but it is a reasonable concern.

I suspect that your doctor meant that SBRT is investigational for extracapsular escape, not for a simple case of PCa still contained in the gland. That is the only way to make his comment make sense, but speculation on my part.   See one more R.O., and a surgeon for thoroughness, so that you will have had all options presented to you.    My choice was surgery because of my particulars, but I do not ever 'recommend' anything to anyone.

In your first post you asked about Hormonal Therapy. That is reserved for metastatic disease, and is not a first-line response to minor cases.  Some cancer treatements are for "curative-effect," meaning they will eradicate all of the disease, hopefully for life.  Others are for "pallative effect," meaning that they control the disease and its symptoms, often for long periods.  Against PCa, surgery and radiation are the only treatments that are potentially curative.  Hormonal and chemo are never curative of PCa, but can extend life, sometimes even for decades.  (To avoid confusion, I will add that chemo IS curative of some other types of cancer, like Lymphoma and leukemia, but not against PCa.)

You are off to a good start toward making a smart and well-informed set of choices here,

max

jeneric82
Posts: 18
Joined: Jan 2018

Thank you for the info.  The Hormone Therapy was only recommended to shrink the prostate down enough to do the brachytherapy. Right now it is too large  to properly place the material due to it's overlap of pelvic bone. When I asked him about my concerns of waiting 6 to 9 months for treatment of the PCa while the HT worked, he told me that it "helped" in that it killed a decent portion of the cancer cells during the therapy so he didn't expect any progression of the disease during that time before brachy.

It's hard for me to fight the urge to just "hurry up and do something". I know I have to take my time to make an informed decision, but there is so much information out there it's easy to get analysis paralysis.    Thank you again

Steve1961
Posts: 246
Joined: Dec 2017

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....

RobLee's picture
RobLee
Posts: 259
Joined: Feb 2017

Many men here have undergone or are currently on HT and are enduring the side effects in a stoically manly manner.  But what I find curious about your post is that you are a very young man yet have limited your choices only to radiation.  Do you have some other medical condition that would cause you to not expect to live another thirty years or so?  Be sure to speak with several older gentlemen who have had pelvic radiation and ask them about their quality of life.

jeneric82
Posts: 18
Joined: Jan 2018

I have no other health problems except for  mild hypothyroidism and some lower back issues from my construction days.  The only options given to me by my onco and uro were the Active Observation, surgery, or radiation. The Active Observation was just really something I wasn't comfortable with. I guess I am too worried about it spreading and then having options taken away. I felt that I had been doing active observation for the past 4 or 5 years as my PSA was climbing but all other tests were negative until the last biopsy.  As far as surgery goes, both of my doctors felt I was not as good of a fit due to my age and possible side effects.

I would love to hear from any older gentlemen who have had the pelvic radiation. I am the type of person who wants to have any and all information that I can before making a decision. That's why I immediately joined this forum. No better wisdom than from those who are living with it or have lived through it. I would have no idea where to go for this info if groups like this didn't exist.

ASAdvocate
Posts: 116
Joined: Apr 2017

Another type of radiation treatment for prostate cancer is high dose radiation brachytherapy (HDRBT). It does not use seeds. Typically one setup and two radiation sessions. It has been performed for over 20 years, and has impressive results. Add that to your research list.

Tech70
Posts: 53
Joined: Nov 2017

Given the low level of cancer in your biopsy cores and the low Gleason score, the best advice I can give is DON'T RUSH INTO ANYTHING.  Your condition isn't going to kill you in the next three months.  Take your time to research everything and persue other opinions.  You may want to have Oncotype DX genomic testing done on the positive sample to get an idea of how aggressive the cancer is.  Three positive cores is borderline for Active Surveillance, but one big advantage of AS is that new technologies are being developed daily to treat PCa.  With a really encouraging GPS on the Oncotype DX testing, it might be worth doing AS for a couple of years. 

 

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

Dear Eric,

If one qualifies, Active Surveillance is always the best choice since there are no side effects, and a young man such as you can have a better quality of life for a longer time....you have many years in front of you. However, the PSA of 10.6 is unexplained, so you may not be a candidate.

You mention that you have had two MRI's. You did not mention if this multiparametric MRI used a 3.0 magnet which provides the best definition in clinical use, or was it a 1.5? The 3.0 is prefarable to best know what is happening.

There is also another image test; a PET scan that is advisable. There are different types of PET scans in existance, someof the better ones are considered investigational and are not covered by insurance, unless in a clinical trial. Others are covered by medical insurance.

https://www.google.com/search?authuser=0&source=hp&ei=SO9UWur6Kc3mjwPxlZaACA&q=prostate+pet+scan&oq=prostate+pet&gs_l=psy-ab.1.0.0l3j0i22i30k1j0i22i10i30k1j0i22i30k1l5.1432.20000.0.24701.43.29.13.0.0.0.191.2942.14j14.29.0..2..0...1.1.64.psy-ab..1.42.3129.6..46j35i39k1j0i131k1j0i20i264k1j0i46k1j0i10k1j0i131i20i264k1j33i160k1j33i21k1.100.FpQG4sIk5jQ

Here is one that is very good that will cost about 3K. He is in 

http://paact.help/update-c11-acetate-petct-imaging-for-prostate-cancer-fabio-almeida-md-2012/

Probably the best one now is 68ga-psma pet scan.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5407340/

..........................

Also note, that the PSA can be affected by many things; sex before the test, riding a bike before the test, even a hard stool.....Also infection can increase the PSA. In your case , a large prostate places pressure on the urethea and secrets more.

 

jeneric82
Posts: 18
Joined: Jan 2018

Excellent question regarding the MRI. I'm going to have to try to find that out. Both my primary and my urologist have felt that I had BPH for a few years, which is what was causing my PSA rise. What triggered them to do the 2nd MRI and subsequent biopsy was the PSA jump from around 8.4 to 10.6. Previously it had been a slow progression.

Clevelandguy
Posts: 456
Joined: Jun 2015

Hi,

Yeah, get all the info you can on the various treaments plus early & late side effects.  Do your homework which will lead you down the correct path.  If you want to do some form of radiation treatment several people on this board have done Cyberknife with good results.  Most radiation treatments are a slow cancer death kind of thing which may take a few years to determine if you have a cure based on psa readings.  Proton radiation offers the benefit that the beam is focused on the tumor and does not go completly through your body(tissue damage on the way in but none past the tumor).  Might be something to look into.

Dave 3+4

RobLee's picture
RobLee
Posts: 259
Joined: Feb 2017

You said you are not a candidate for surgery due to your age. I thought you said you are 51. Typically the cutoff for surgery is 70, and sometimes even higher for healthy men. Given your relatively low PSA (~10) small number of positive cores (3?) and Gleason score 6, I find it very curious that you are still only considering radiation. I've had surgery, radiation and hormone therapy and the only thing I would have done differently would be to have changed urologists two years earlier, when my numbers might have still been as low as yours... and then the HT and radiation would have been totally unnecessary. Don't dismiss surgery until you have at least investigated it as a possibility. Given your favorable stats you'd likely be home in a day and fully continent in a month. Or is there something beyond your youth and excellent health that I may have overlooked?

 

jeneric82
Posts: 18
Joined: Jan 2018

I'm assuming that the surgery is the prostatectomy?  To be completely candid, I had more fears of the possible side effects of the surgery. I think my issue is that most of the articles I read seemed to focus on the negative long term side effects of the surgery , especially the incontinence and ED.  My uro and oncologist both presented surgery as an option, but that it was probably the more radical of the approaches for me at this time and due to my fears I didn't push back on that. I will say it would probably be cheaper.  My father (not biological) had surgical removal and told me that he would have done radiation if he would have had the option and could do it over again. He has suffered from some of the side effects long term. 

After hearing from you though, I will try to go back and look at some more information on surgery and try to keep an unbiased view.  Thank you for your input.

 

Clevelandguy
Posts: 456
Joined: Jun 2015

Hi,

Do your research and find the treatment that is best for you.  Both surgery & radiation have side effects don't let anyone kid you. I had surgery a little over 3 years ago, ED is all gone and still have just a little stress incontinence for which I wear a light pad, probably will for the rest of my life.  Radiation can have late developing side effects also like scar tissue and sometime a higher than normal chance of getting a secondary cancer where the radiation hit.  Know what you are getting into, it's your choice.  You have the time to think it over, people on this board will help you out.

Like Red Green always said,  Remember, I'm pulling for you. We're all in this together. 

Dave 3+4

 

jeneric82
Posts: 18
Joined: Jan 2018

Thank you, I appreciate it.  When I first came home from the oncologist yesterday, I immediately thought of a dozen questions that I forgot to ask him. I emailed him and he responded immediately, but I still felt uneasy without talking to some people who had actually gone through or are currently going through this. Thanks to Google, I came across this site and saw how supportive and kind everyone seemed to be and had to join. 

Again, I appreciate your....and everyone's input.   Eric

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

Dear Eric,

You are right, surgery can have the greatest side effects versus any other treatment.

Additionally, surgery is a localized treatment only, and if the   cancer is outside the prostate, one will still need another treatment, ie radiation, etc., and the side effects of each treatment are cummulative. Additional treatment after surgery happens fairly frequently.

With radiation the perimeter of the treatment can be extended outside the prostate, so intermeediate prostate cancer can more readily be treated.

 

Grinder
Posts: 441
Joined: Mar 2017

To be more specific, did your father have robotic surgery or open surgery? How many, if any nerve bundles were spared?

It is not enough to just scare you with "greatest side effects" without a proper explanation.

The most typical side effect that happens 100% of the time with surgery is a section of the urethra is also taken out, and the business tool (penis) is retracted to make up the difference, usually 1 to 2 inches. So if you cannot afford to lose an inch or so of length, be forewarned. I don't mean to be crude, but honest... If your tool is plenty long, you are fine, but for some guys who didn't have much to begin with, this is a terrible revelation that urologists never seen to mention, as you will find if you read farther back in the archives of this forum, it can be a traumatic discovery.

Then there is incontinence, but if you have successful nerve sparing surgery, you will see improvement in 3 to 6 months, and full or nearly full recovery in a year or so.

Then there is the ED, and similarly, if you had successful nerve sparing surgery, you will see a full recovery in a year or so... But you may have to use a vacuum pump, cialis, or other treatment to " prime the pump" to get blood circulating into your business tool.

But sometimes incontinence and/or ED can be permanent. Causes likely are nerve bundles were damaged for whatever reason or could not be spared, or the surgeon was not a well experienced surgeon, as it takes a surgeon a LOT of experience with robotic surgery to perform it at optimum competence.

I had the DaVinci surgery and it was wildly successful, but I am not afraid to lay out the possibilities up front, no matter how remote the chances are... And I  don't want you to make any decision without being fully informed. 

Also, you shouldn't need to shrink the prostate with HT if you get surgery or Cyberknife, as 60 (cc?) is hardly that large, so that is an advantage. Someone please correct me if I am wrong about that.

jeneric82
Posts: 18
Joined: Jan 2018

Thank you. I'm fairly certain my father had the open surgery. I think that some of his side effects have subsided, but to be honest, since I received my diagnosis I have not yet asked him about the intimate details. I plan to now that I have a vested interest in the knowledge.

As far as the CyberKnife, I assume that this is the same as the SBRT, which I am needing to get a second opinion on. My oncologist did not seem to like it nor think I was a good candidate, but I'm not sure I asked all the proper questions at the time to determine why. I thought I was very well prepared when I went in, but the amount of info coupled with the haze of anxiety proved me wrong. lol

I'm planning on biting the bullet and paying for a second opinion at a local cancer center, Banner MD Anderson this week. We are on a high deductible plan so all of my medical costs are coming out of pocket for the first couple months (up to 1500), but I have a feeling that won't be a problem for very long with any treatment I choose.

Thanks Grinder

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

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
Posts: 2
Joined: Jan 2018

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 

 

fishinguy
Posts: 18
Joined: Dec 2017

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.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3295
Joined: May 2012

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

jarvis55
Posts: 2
Joined: Jan 2018

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

SubDenis's picture
SubDenis
Posts: 130
Joined: Jul 2017

You may want to look into HDR Brachytherapy.  

jeneric82
Posts: 18
Joined: Jan 2018

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
Posts: 116
Joined: Apr 2017

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

 

jeneric82
Posts: 18
Joined: Jan 2018

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
Posts: 7
Joined: Dec 2017

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
Posts: 18
Joined: Jan 2018

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!  

ASAdvocate
Posts: 116
Joined: Apr 2017

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
Posts: 720
Joined: Aug 2014

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
Posts: 18
Joined: Jan 2018

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's picture
VascodaGama
Posts: 3013
Joined: Nov 2010

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

 

jeneric82
Posts: 18
Joined: Jan 2018

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.

VascodaGama's picture
VascodaGama
Posts: 3013
Joined: Nov 2010

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

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