Nervous Introduction

Josephg

Biopsy Results

Hellostone, I'm sorry to read that your biopsy results show a Gleason staging higher than you were hoping for.  But as you stated, you now have a better idea regarding what your current situation is, and as such, now you can become more focused on reviewing available treatment options.

The one recommendation that I would make to you, as a lay person, is to find and engage an Oncologist, and, going forward, have the Oncoligist participate in your treatment options review and planning.  In my case, the one constant is that I have an Oncologist with me throughout my PCa journey. I consulted with her prior to surgery, and then later before my hormone and radiation therapies, and now today in a every-four-months visit for a watch/wait consultation mode, tracking my PSA changes.

We here in the Forum are with you, and I wish you the best of outcomes on your PCa journey.

Hellostone

Thanks guys. Meeting with a

Thanks guys. Meeting with a RO next week and a MO a few weeks from now. Wondering if the reported perineural invasion in several of the cores, coupled with the numerous 4+3s, will lead them to advocate for including some systemic treatment with some ADT...and whether surgery may be less preferred. I suppose the jury might be out until they do more body/pelvic scans. 

Gforce, hope the protons do their job!!  May I ask where you're having it done?

Gforce

www.floridaproton.org. UF

www.floridaproton.org. UF Health is connected to the UF school of medicine. I am staying in one of their reccomended fully furnished apartments for $1600/mo. Apartment is one mile from the center. Jacksonville in the winter is not a bad place to be. The Lupron ADT is really no big deal if you stay active in the gym. The side effects are hot flashes, and a little weight gain around the middle. Hot flashes are not what you may think. No towel needed (LOL). Where are you located in this great big world. 

Grinder

Prostate size

Just to add to what the urologist said about prostate volume...

Besides  BPH and Prostate Cancer there is also acute and chronic prostatitis... usually caused by bacterial infection.

In my case, my prostate was 250cc at the biopsy and down to 197cc in the post-op report after surgery. But during prostatitis bouts it was even larger and would shut down all my "plumbing". In my case it was a recurring staph infection prostatitis with BPH and Prostate Cancer Gleason 6.

Just wanted to clear that up in case there was anyone with prostatitis... a urine culture will be able to tell whether symptoms are BPH or Prostatitis caused by infection.

VascodaGama

Consider second opinions from various specialists

Stone,

Sorry to hear about the positive diagnosis. I wonder if any thing else is described in the report. The number of positive cores (5) and the high percentage found in each needle represent a voluminous cancer case which added to the perineural invasion finding lead to the possibility of existing extra prostatic extension.

This prognosis doesn't imply the need for ADT, but your doctor may see it not contained, suggesting that surgery may not be enough to assure total clean up. Radiation added to prostatectomy could be an option, however radiation alone applied as prime therapy can do the job. The CT may be seen as a protocol requirement in the diagnosis process. I do not think it will add more information than what was found in the previous mpMRI.

In my lay opinion, RT should be considered due to the voluminous grade 4 (aggressive) found in all the positive cores and high PSA. I wonder if you have done a DRE.

Second opinions will help you in formulating a final decision. You should also consider the quality of life in the future because you are young and will be embarking in a journey where the side effects from the treatment will affect you much.

Get your family involved in the decision.

Best wishes and luck in this difficult moment of your life.

VGama.

lighterwood67

Hellostone said:

Joseph, many thanks for your

Joseph, many thanks for your thoughtful reply; I really (really) appreciate it.  I am trying to keep a calm, restful frame of mind, but today hasn't been a model of that -- at least, since I caculated my PSA/prostate density this afternoon and realized it was over 50%.  I'm hoping that's just another indicator that PCa is likely to be found on biopsy, and that it's doesn't also indicate a greater likelihood that the PCa will be more aggressive -- which of course means that that is exactly what my mind keeps thinking... 

IndyJoe, thanks again.  That pcf guide is a great resource.

Tech70, thanks.  Trying not to fret, but fretting is what I (currently) do best!  

Your Journey

“Illness is the night side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.”

― Susan Sontag, Illness as Metaphor

 

Good luck on your journey.  

Hellostone

lighterwood67 said:

Your Journey

“Illness is the night side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.”

― Susan Sontag, Illness as Metaphor

 

Good luck on your journey.  

LW, that's brilliant, thank

LW, that's brilliant, thank you!

Hellostone

VascodaGama said:

Consider second opinions from various specialists

Stone,

Sorry to hear about the positive diagnosis. I wonder if any thing else is described in the report. The number of positive cores (5) and the high percentage found in each needle represent a voluminous cancer case which added to the perineural invasion finding lead to the possibility of existing extra prostatic extension.

This prognosis doesn't imply the need for ADT, but your doctor may see it not contained, suggesting that surgery may not be enough to assure total clean up. Radiation added to prostatectomy could be an option, however radiation alone applied as prime therapy can do the job. The CT may be seen as a protocol requirement in the diagnosis process. I do not think it will add more information than what was found in the previous mpMRI.

In my lay opinion, RT should be considered due to the voluminous grade 4 (aggressive) found in all the positive cores and high PSA. I wonder if you have done a DRE.

Second opinions will help you in formulating a final decision. You should also consider the quality of life in the future because you are young and will be embarking in a journey where the side effects from the treatment will affect you much.

Get your family involved in the decision.

Best wishes and luck in this difficult moment of your life.

VGama.

Thanks

Thanks Vasco. I should go back over my report again later.  Though I recall that he oversampled the left side where the mpMRI had reported the lesion; think there were just 3 cores taken on the right side  I wonder if that imbalance affects the conclusions to be drawn re volume and positive sample number  

Neither my GP not the urologist had found anything of note on their DREs, other than the uro's comment that the prostate certainly didn't feel large. (Turned out to be just 23cc on MRI).  Does a relatively small prostate improve the odds of surgical or radiation success? Since maybe the margins between the gland and bladder/rectum are more spacious (more cushion)??

VascodaGama

Decision process

Stone,

Can you copy the pathologist's report and paste it here. Typically the template bores at three regions in each lobe (2x3x2)=12, adding additional two needles to investigate MRI findings. What was yours?

Regarding sizes, I do not think that you got such a relatively small prostate as you comment. 23cc is absolutely a normal sized gland for a 53 years old. Older guys (above 60) have bigger glands (40cc) also considered normal sized. In any case, the size doesn't imply that surgery is better than radiation or vice versa. By hypothetic rule, surgery is recommended in contained cases as one assures a total clean up dissecting the whole gland. Cases where containment cannot be assured are usually moved to radiotherapy. Some doctors like the so called "... mother of all treatments... " and deliver combination therapies with protocols that include surgery plus radiation added to ADT. One should also to consider that surgeons (urologists) prefer to recommend surgery as much as radiotherapists recommend radiation. In the end, it is us who decide on the treatment and who assume full responsibility on the outcomes. We all sign an agreement before the treatment, relieving the hospital and physicians of any responsibility on the treatment.
Second opinions help in reaching that decision.

Please note that you are not alone. We all here have experienced the same difficulty in deciding on an option. We read a lot and listen to the doctors and once comfortable with something we decide. Surely that is the best we managed to get and surely it is the best choice. Be confident. You will get it too.

Best,

VG

 

Hellostone

VascodaGama said:

Decision process

Stone,

Can you copy the pathologist's report and paste it here. Typically the template bores at three regions in each lobe (2x3x2)=12, adding additional two needles to investigate MRI findings. What was yours?

Regarding sizes, I do not think that you got such a relatively small prostate as you comment. 23cc is absolutely a normal sized gland for a 53 years old. Older guys (above 60) have bigger glands (40cc) also considered normal sized. In any case, the size doesn't imply that surgery is better than radiation or vice versa. By hypothetic rule, surgery is recommended in contained cases as one assures a total clean up dissecting the whole gland. Cases where containment cannot be assured are usually moved to radiotherapy. Some doctors like the so called "... mother of all treatments... " and deliver combination therapies with protocols that include surgery plus radiation added to ADT. One should also to consider that surgeons (urologists) prefer to recommend surgery as much as radiotherapists recommend radiation. In the end, it is us who decide on the treatment and who assume full responsibility on the outcomes. We all sign an agreement before the treatment, relieving the hospital and physicians of any responsibility on the treatment.
Second opinions help in reaching that decision.

Please note that you are not alone. We all here have experienced the same difficulty in deciding on an option. We read a lot and listen to the doctors and once comfortable with something we decide. Surely that is the best we managed to get and surely it is the best choice. Be confident. You will get it too.

Best,

VG

 

Path Report

Thanks Vaso.  Here's the pathology report.  Looks like I'm a lefty, with only three samples (all negative) taken on the right side.  I understand that Dana Farber pathology usually gives the slides their own review once they get them, so will see if anything changes. Meeting with an RO there tomorrow.  Thanks

 

 

HISTORY OF PRESENT ILLNESS: Patient underwent biopsies for PSA of 13.29 and an MRI that revealed a lesion on the left side. The biopsies as outlined below reveal a Gleason 7 cancer in majority of the biopsies on the left side.

 

 

1/24/2020 PROSTATE, NEEDLE BIOPSIES (A-I):

 

A. LT LAT BASE:            ADENOCARCINOMA, GLEASON SCORE 4+3=7 (WHO GRADE GROUP 3), INVOLVING 50% OF TISSUE.

 

PERINEURAL INVASION IS PRESENT.

 

B. LT LAT MID:               ADENOCARCINOMA, GLEASON SCORE 4+3=7 (WHO GRADE GROUP 3), INVOLVING 90% OF TISSUE.

 

PERINEURAL INVASION IS PRESENT.

 

C. LT LAT APEX:           ADENOCARCINOMA, GLEASON SCORE 3+4=7 (WHO GRADE GROUP 2), INVOLVING 80% OF TISSUE.

 

PERINEURAL INVASION IS PRESENT.

 

D. LT MED BASE:          ADENOCARCINOMA, GLEASON SCORE 4+3=7 (WHO GRADE GROUP 3), DISCONTINUOUSLY INVOLVING 20%, 40% OF TISSUE IN 2 OUT OF 2 CORES.

 

E. LT MED MID:             ADENOCARCINOMA, GLEASON SCORE 4+3=7 (WHO GRADE GROUP 3), INVOLVING 30% OF TISSUE IN 1 OUT OF 2 CORES.

 

F. LT MED APEX:          ADENOCARCINOMA, GLEASON SCORE 4+3=7 (WHO GRADE GROUP 3), DISCONTINUOUSLY INVOLVING 20% OF TISSUE.

 

G. RT LAT BASE:           NO MALIGNANCY IDENTIFIED.

 

H. RT LAT MID:              NO MALIGNANCY IDENTIFIED (FIBROMUSCULAR TISSUE ONLY).

 

I. RT LAT APEX:            NO MALIGNANCY IDENTIFIED (FIBROMUSCULAR TISSUE ONLY).

 

 

ADDITIONAL FINDINGS:    ATROPHIC GLANDULAR CHANGES

VascodaGama

Second opinions from the RO

Stone,

You're moving in the right direction. I hope the RO helps you in understanding the situation. Take along a list of questions and discuss about anything even if that seems awkward to be done to a RO. For instance, about the particulars of your gland size in regards to type of treatment, and about the atrophic glandular changes identified by the pathologist. Inquire if the finding  affects judgement were it related to diffused or focal atrophy.

My comment on the biopsy report; I have counted 11 needless, two of them directional to the base/mid areas (Gr 4+3) closer to the center of the gland. It may relate to the area identified in the MRI, which corresponds to the same direction of the nerves bundle running above closer to the shell, also diagnosed with cancer from the base (under the bladder) to the apex (attached to the rectum).

It shows a voluminous cancer with the aggressive Gr 4. The right globe was disregarded, with just three cores, probably because of the MRI negative results. Though I think that it should have been treated equally with the 6 traditional needles, the doctor’s assumption in avoiding the full protocol creates ambiguity. It will be difficult to decide in preserving the right lobe whole or even in preserving the nerve bundle if surgery becomes an option.

In any case, the biopsy results are valid and proper to proceed with a conclusion. Now you need to receive a clinical stage from where to decide on a treatment.

Please let us know about the discussion with the RO.

Best wishes.

VG

 

Hellostone

VascodaGama said:

Second opinions from the RO

Stone,

You're moving in the right direction. I hope the RO helps you in understanding the situation. Take along a list of questions and discuss about anything even if that seems awkward to be done to a RO. For instance, about the particulars of your gland size in regards to type of treatment, and about the atrophic glandular changes identified by the pathologist. Inquire if the finding  affects judgement were it related to diffused or focal atrophy.

My comment on the biopsy report; I have counted 11 needless, two of them directional to the base/mid areas (Gr 4+3) closer to the center of the gland. It may relate to the area identified in the MRI, which corresponds to the same direction of the nerves bundle running above closer to the shell, also diagnosed with cancer from the base (under the bladder) to the apex (attached to the rectum).

It shows a voluminous cancer with the aggressive Gr 4. The right globe was disregarded, with just three cores, probably because of the MRI negative results. Though I think that it should have been treated equally with the 6 traditional needles, the doctor’s assumption in avoiding the full protocol creates ambiguity. It will be difficult to decide in preserving the right lobe whole or even in preserving the nerve bundle if surgery becomes an option.

In any case, the biopsy results are valid and proper to proceed with a conclusion. Now you need to receive a clinical stage from where to decide on a treatment.

Please let us know about the discussion with the RO.

Best wishes.

VG

 

Thanks Vasco

Many thanks Vasco.  Meeting with the RO went well, though I think I may have felt more comfortable with his chief resident with whom we spent more time talking than with the RO near the end.  Reminded me a bit of the dentist popping in for a relatively brief look see after spending most of your appt with the hygenist -- obviously an imperfect analogy; the RO did much more than drop in for merely a moment.  But it has set me thinking about the twin goals of research and patient care at teaching hospitals, and whether both always go hand in hand.  Not in any way to implly criticism or dissatisfaction in my experience--I'm just remembering "great professors" in school who may have been better at research/publshing than teaching/relating to students.

Enough musing.  In a nutshell:  given my unfavorable intermediate risk status with plenty of 4+3, they would recommend EBRT + brachy + ADT (6 months).  We didn't get into specifics of how those would be sequenced (I basically forgot all my detailed questions).  Interestingly, they didn't seem that concerned about the perineural invasion on the path report.  They did emphasize that they thought ultimate cure rate would be similar for RT or surgery.  

I should acknowledge they had just received the reports and had not yet received the biopsy slides, which will get a fresh read by the time I meet with an MO in mid-February (and then Dr Kibel, chief uro surgeon, at the beginning of March).  

I intend to ask a few questions of the ROs by follow up email:

What would the specific sequencing of the EBRT, BT and ADT be?  Would ADT begin a few months before the RT begins?

Should they perform (and read) their own mpMRI to reconfirm no indications of EPE etc?  Ditto with regard to CT and bone scans.

Sorry this post is so scrambled; that's pretty much my brain these days.

Thanks -- if/when I'm better able to assemble more coherent questions, I'll likely aim to start with a new thread. Hoping that's ok.

VascodaGama

Cure rate similar in RT or RP for contained cases

Stone,

Thanks for the update. Overall it seems that you got a good consultation at the RO department. Sorry to hear that the RO did not spend much time clarifying doubts. These guys cost money by the hour so they limit their timing with matters involving exclusively the treatment. They leave those diagnosing aspects to be discussed by the interim doctor (or should I say, the hygienist.) before the meeting. We need to be prepared in advance with some knowledge on the matter and start by inquiring before allowing them to give us the conclusion. I am surprised that you have started these meetings without a Clinical Stage that should have been established already by the urologist (?)

Regarding your meeting, I cannot fully understand the reason for the comment on the "similar cure rates" when, at the same time, they recommend an extensive combination treatment involving EBRT+Brachy+ADT, which usually is recommended to cases with extraprostatic extensions (not contained). We know that surgery would have lower rates of success if extraprostatic extensions were present. Probably they want to say that in contained cases, both therapies got similar rates, differing only in terms of the side effects.

Regarding the protocol and its sequential, it all depends on the type of brachy they are suggesting. Low Dose Brachy (LDB) done with seeds implants, is usually applied alone to treat contained cases, but it is also used as a RT booster applied adjuvant to the EBRT. High Dose Brachy (HDB) that involves insertion of temporary RT rods is usually recommended in risky cases. These usually are administered neoadjuvant followed by EBRT as a boost, but in some cases it becomes adjuvant to EBRT.

The intent of the combi is to focus and deliver the maximum radiation to the areas where cancer hides avoiding areas known to be usually free from cancer. The main protocol involves the whole gland (Brachy alone or EBRT+ Brachy) plus the area surrounding the gland (nerve bundle, seminal vessicles, etc) inclusive of the localized lymph nodes (EBRT alone). In a protocol involving seeds implants as prime therapy (+/- 15Gy), an adjuvant EBRT would be used to reinforce the dose of radiation delivered to the gland (20 to 35GY). In this respect CK (SBRT) substitutes well LDB or HDB in contained cases. Combination RT in EPE cases aim in distribuiting higher total doses (9oGy) to the various regions.

ADT in the context of the treatment serves to improve the effects of the radiation. In trials it has demonstrated a 35% increased benefit in the RT outcome. Therefore, the sequential is usually started with ADT followed two months later by the neoadjuvant EBRT and adjuvant LDB that is applied two/three weeks after that. The hormonal involves a Lupron (3-month) shot followed by one or more shots to a defined total period (6 months for your case). These shots will give a blow to the cancerous cells, maintaining them quietly along their life cycle (approximately 6 months). You will experience sort of menaupose symptoms due to the chemical castration (hypogonadism). These usually vanish two month after the end of the effectiveness of the drugs (2x3 plus 2). The RT side effects typically start being felt at one month into the treatment.

As you may understand, "Perineural Invasion" is never seen as a matter of concern in radiation planning because the isodose will cover those areas. The RO therefore is more concerned if there is a positive Bone scan.

In your next meeting with the MO, apart from discussions on treatment options (administered individually or in combinations), you can inquire about the effects of the hormonal treatment and how to counter each particular symptom, would these became nasty or unbearable. You can also inquire on his opinion regarding extra exams that may complement the treatment of choice such as; a bone densitometry scan to check bone health (ADT affects the bone), a colonoscopy to check for ulcerative colitis (may prohibit RT), a complete blood analysis inclusive of the testosterone (regulates the hormonal drugs), etc. Surely this time you should take along copies of the MRI and biopsy report.
Doctors working at the same hospital may have access to the data of a particular patient but they do not look for the details. They procure the conclusions reached by other physicians, trying always not to interfere with their opinions.

I think that you have been assisted at Boston's Dana-Farber. Is this the place where you have done the mpMRI and the biopsy?
You also mention the name of the surgeon, Dr Kibel (meeting of March) , and I wonder if he is Adam Kibel, a specialist in genitourinary oncology. Is he the urologist you met initially?
I have read several of Dr A. Kibel papers, most particularly involving combination treatments. He is an advocate of the so called "mother of all treatments" or more scientifically saying, "Multimodal therapy". This is an approach to treat cancer involving combined weapons to fight the cancer from several fronts at the same time. Surely the practice will assure higher possibility of cure but it will also involve more risks and side effects that may prejudice the quality of life of the patient. Multimodal therapies have shown benefits regarding long chemical free periods (remission) but I have not read yet about their benefits in terms of longer survival rates. Recently, multimodal treatments also include immunotherapy approaches that have shown success in treating cancer. I am from the old school following sequential therapies trying to keep Q&L as much as I can.

I recommend you to prepare a List of Questions for the meetings with the doctors. Try to include items in regards to required preparedness for each type of therapy, the time it takes to recuperate and the expected side effects, like; incontinence issues, libido and ED, late radical proctitis of RT, etc.

Here are some links with information on the above;

https://www.cancer.org/cancer/prostate-cancer/treating/radiation-therapy.html

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6043740/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5721712/

Best wishes,

VGama

 

Gforce

Proton Therapy

You are going to find facilities that don't have a proton machine will not advise you of the benefits. Please do your research so you have those questions ready. No ligitimate RO will dispute the reduction in side effects. If your insurance covers it, then it should be on the table for consideration. Today is 8 of 40 treatments for me and all is well. I am also on ADT up until treatment and through treatment. That is a very good path to follow. You will find it is hell for the first month or so as your body gets as used to low T as it can. After that, just hot flashes. 

Hellostone

VascodaGama said:

Cure rate similar in RT or RP for contained cases

Stone,

Thanks for the update. Overall it seems that you got a good consultation at the RO department. Sorry to hear that the RO did not spend much time clarifying doubts. These guys cost money by the hour so they limit their timing with matters involving exclusively the treatment. They leave those diagnosing aspects to be discussed by the interim doctor (or should I say, the hygienist.) before the meeting. We need to be prepared in advance with some knowledge on the matter and start by inquiring before allowing them to give us the conclusion. I am surprised that you have started these meetings without a Clinical Stage that should have been established already by the urologist (?)

Regarding your meeting, I cannot fully understand the reason for the comment on the "similar cure rates" when, at the same time, they recommend an extensive combination treatment involving EBRT+Brachy+ADT, which usually is recommended to cases with extraprostatic extensions (not contained). We know that surgery would have lower rates of success if extraprostatic extensions were present. Probably they want to say that in contained cases, both therapies got similar rates, differing only in terms of the side effects.

Regarding the protocol and its sequential, it all depends on the type of brachy they are suggesting. Low Dose Brachy (LDB) done with seeds implants, is usually applied alone to treat contained cases, but it is also used as a RT booster applied adjuvant to the EBRT. High Dose Brachy (HDB) that involves insertion of temporary RT rods is usually recommended in risky cases. These usually are administered neoadjuvant followed by EBRT as a boost, but in some cases it becomes adjuvant to EBRT.

The intent of the combi is to focus and deliver the maximum radiation to the areas where cancer hides avoiding areas known to be usually free from cancer. The main protocol involves the whole gland (Brachy alone or EBRT+ Brachy) plus the area surrounding the gland (nerve bundle, seminal vessicles, etc) inclusive of the localized lymph nodes (EBRT alone). In a protocol involving seeds implants as prime therapy (+/- 15Gy), an adjuvant EBRT would be used to reinforce the dose of radiation delivered to the gland (20 to 35GY). In this respect CK (SBRT) substitutes well LDB or HDB in contained cases. Combination RT in EPE cases aim in distribuiting higher total doses (9oGy) to the various regions.

ADT in the context of the treatment serves to improve the effects of the radiation. In trials it has demonstrated a 35% increased benefit in the RT outcome. Therefore, the sequential is usually started with ADT followed two months later by the neoadjuvant EBRT and adjuvant LDB that is applied two/three weeks after that. The hormonal involves a Lupron (3-month) shot followed by one or more shots to a defined total period (6 months for your case). These shots will give a blow to the cancerous cells, maintaining them quietly along their life cycle (approximately 6 months). You will experience sort of menaupose symptoms due to the chemical castration (hypogonadism). These usually vanish two month after the end of the effectiveness of the drugs (2x3 plus 2). The RT side effects typically start being felt at one month into the treatment.

As you may understand, "Perineural Invasion" is never seen as a matter of concern in radiation planning because the isodose will cover those areas. The RO therefore is more concerned if there is a positive Bone scan.

In your next meeting with the MO, apart from discussions on treatment options (administered individually or in combinations), you can inquire about the effects of the hormonal treatment and how to counter each particular symptom, would these became nasty or unbearable. You can also inquire on his opinion regarding extra exams that may complement the treatment of choice such as; a bone densitometry scan to check bone health (ADT affects the bone), a colonoscopy to check for ulcerative colitis (may prohibit RT), a complete blood analysis inclusive of the testosterone (regulates the hormonal drugs), etc. Surely this time you should take along copies of the MRI and biopsy report.
Doctors working at the same hospital may have access to the data of a particular patient but they do not look for the details. They procure the conclusions reached by other physicians, trying always not to interfere with their opinions.

I think that you have been assisted at Boston's Dana-Farber. Is this the place where you have done the mpMRI and the biopsy?
You also mention the name of the surgeon, Dr Kibel (meeting of March) , and I wonder if he is Adam Kibel, a specialist in genitourinary oncology. Is he the urologist you met initially?
I have read several of Dr A. Kibel papers, most particularly involving combination treatments. He is an advocate of the so called "mother of all treatments" or more scientifically saying, "Multimodal therapy". This is an approach to treat cancer involving combined weapons to fight the cancer from several fronts at the same time. Surely the practice will assure higher possibility of cure but it will also involve more risks and side effects that may prejudice the quality of life of the patient. Multimodal therapies have shown benefits regarding long chemical free periods (remission) but I have not read yet about their benefits in terms of longer survival rates. Recently, multimodal treatments also include immunotherapy approaches that have shown success in treating cancer. I am from the old school following sequential therapies trying to keep Q&L as much as I can.

I recommend you to prepare a List of Questions for the meetings with the doctors. Try to include items in regards to required preparedness for each type of therapy, the time it takes to recuperate and the expected side effects, like; incontinence issues, libido and ED, late radical proctitis of RT, etc.

Here are some links with information on the above;

https://www.cancer.org/cancer/prostate-cancer/treating/radiation-therapy.html

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6043740/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5721712/

Best wishes,

VGama

 

Thanks isn't enough

VG, many thanks for taking so much time and thought to respond.  I am grateful in a way that mere words won't adequately convey.

I will certainly spend more time digesting this, but wanted to respond quickly to a few of your questions/comments.

You are right that I'm now at Dana Farber, and have appts with MO Dr. H Beltran and Uro Dr. Adam Kibel.  Dr. Kibel is not the urologist I met initially.  That urologist was a local guy outside of Boston (to whom I was referred by my primary care physician); that urologist ordered the mpMRI, conducted the biopsy, and delivered the diagnosis well, and he recommended that I talk with an RO and MO at Dana Farber before we see other again.  When I contacted Dana Farber to schedule those meetings, they said they would also have me meeting with a Dana Farber urologist as a matter of course.  I'm looking forward to meeting Dr. Kibel, whose lectures and interviews I've enjoyed on YouTube (never knew YT could be helpful for such weighty matters!).  I'm not surprised to hear he's a fan of multimodal therapy; I think I recall him saying almost those same words in an interview with Mary Ellen Taplin.

Re clinical staging, so far as I know, no DRE has yet returned anything palpable, so I've assumed I'm at T1c.  But perhaps you meant something else with your comment about clinical stage?

Lastly (for now), I regret doing a poor job in my prior post of describing my first RO appt -- it was just a bit different than I anticipated, but it was still extremely valuable thanks to all the docs we met.  I'll just prepare a bit better next time!

Thanks again

VascodaGama

T2c with characteristics of T3a

Stone,

You are welcome. Please note that I am not a doctor. I try helping the many here with comments and opinions based on my own experience or from researches done along the years while being a patient. I have followed similar steps as the ones you are taking back in 2000 at diagnosis, when I was 50 years old. I think you have done well so far. Let's see what the doctors at Dana Farber have to say.

Regarding the clinical stage, this should have been attributed by your first urologist based on the PSA, DRE, mpMRI, Biopsy and Bone scan. Accordingly, you got high PSA (13.3 ng/ml), negative DRE (-), Positive MRI (+) and Voluminous cancer (5 positive out of 11) Gleason score 7 (4+3). The missing piece is the Bone scan (MX) but with the above data one can assume already that you belong to the staging group 3. Officially it is T2c with characteristics of T3a (high PSA and Gr 4+3). Surely these conclusions would differ if the pathologist at Dana Farber informs findings of a lower grade Gleason in their biopsy's second opinion.

You can discuss the matter with the MO. Remember to discuss on the additional exams and tests I listed above.

Best,

VG

Hellostone

A lousy update

Not sure if it's appropriate to keep appending to this thread, but by way of update:  Ive now met with the Uro and MO at Dana-Farber, both of whom I liked and felt comfortable with--but the real and unwelcome development is that the bone scan and the CT scan each showed suspicious bone lesions on different sides of my pelvis. In other words, their findings didn't overlap or corroborate at all. So an Axumin PET scan is now scheduled next week as a tie-breaker.  Definitely was not expecting these scans to show anything. So now the research efforts intensify, in a different direction.  [ETA:  the pathology read of the biopsy slides by Dana Farber was pretty consistent with the initial read--4+3 with a lot of 4, and PNI evident.]

Josephg

Appending Thread

In my opinion, you should keep updating this thread, since you started it.  In this manner, all of your shared posted information, and Forum member comments regarding your PCa, are all contained in one thread.

Like you, Dana Farber is the medical institution that manages my PCa, and I have the utmost trust in them.  Let's see what the results of the PET scan are, and then you can make more definitive plans going forward.

I wish you the best of outcomes on your journey.

VascodaGama

Confused but in good hands

I agree with Josephg above. The PET exam will be very valuable in the screening as it checks the whole body. You doing it well in taking time for added information. Do not worry if this delays the final decision, Your status doesn't change in a couple of months. More tests more precise information and better opinions drawn by the physicians. Surely that bone involvement will limit the options. Typically MO recommends systemic approaches where Urologists may prefer a radical. The final decision is yours and you should consider the risks in each treatment, apart from the benefits.

I want to know the results of the PET. I hope they identify and locate the neoplasia.

Best,

VG

NOTE: I wonder about your suggestion in changing threads. You can keep this thread by changing its title, if that is your reason.

Josephg

Thread Name Change

Good comment/suggestion, Vasco.

I thought of the same thing, shortly after I posted my comment, but I did not have time to re-open it, and edit it to include that suggestion.