PSA 8.65, Gleason 6, 3+3, 10/12 cores positive

SMZ

My husband is 64 yr old, no diabetes or other chronic issues. We are social, exercise regularly and are sexually active. Living in Hong Kong, he was diagnosed on June 3, 2013 through biopsy after PSA rise over 2 years. We were told it is "Intermediate Stage".

Biopsy Report:

Extent of Tumor:

1. RT Base.  70%
2. RT mid-gland. 40%
3. RT Apex. No malignancy
4. RT Lateral horn upper. 80%
5. RT Lateral horn middle. No malignancy
6. RT Lateral horn lower. 15%
7. Left base. 15%
8. Left mid-gland. 50%
9. Left apex. 5%
10. Left lateral horn upper. 20%
11. Left lateral horn middle. 10%
12. Left lateral horn lower. <5%

From what I understand, this makes the cancer stage T2c, as cancer is in both lobes. DREs have been "unremarkable" by 3 specialists (urologists and RTs) and one has noticed firm lobe on one side only. We have been told by US surgeon at Jonhs Hopkins that stage is according to DRE result and since prostate was unremarkable, it is "Early Stage". 

Is it, if the biopsy shows disease in both lobes??

Also,has anyone had nerve sparing surgery with this extent of disease? What are the prospects re: QOL?

Many thanks for any input!

 

 

Kongo

Confusion Reigns

Dear SMZ,

I am sorry to read of your husband's diagnosis.  In the begining there is a flood of new and confusing information from many sources.  It is hard to figure it all out.  From what I read in your post I believe you may be confusing "risk" and "staging."  Staging is a rather straight forward protocol based on a variety of factors such as Gleason score, extent of cancer within the prostate, whether it has spread to the lymph nodes or not, whether or not it has evolved to a distant metastasis, the physical characteristics of the DRE and so forth.  Despite the fact that it is present on both lobes of the prostate, I would grade your husband's stage as a T1c since it was discovered as a result of increasing PSA (I assume) and the DRE was "unremarkable."  The confusion seems to occur about T2c when it mentions both lobes but that, in my opinion, is also in conjunction with an abnormal DRE.

The risk associated with prostate cancer is often catergorized as "low risk," "intermediate risk," or "advanced risk." and these are a function of the Gleason score.  In your case a Gleason score of 6 qualifies as a "low risk" condition.  A Gleason 7 (either a 3+4 or 4+3 grade) is considered intermediate.  Gleason scores of 8 or higher are considered advanced risk cases.

The Gleason score is a subjective evaluation on the part of the pathologist.  I would urge you to get a second opinion from a pathologist that specializes in looking at prostate cancer biopsies.  Your diagnosing doctor should be able to point you in the right direction and give you details on how to do this.  Johns Hopkins is one of the most common places men with a prostate cancer diagnosis send their samples to.

Nerve sparing surgery for a Gleason 6 that is still contained within the prostate should not be a problem if that is the path you choose to follow.  The term "nerve sparing" is a bit of a misnomer.  In fact the nerves they are talking about are about the width of a human hair and line the outer capsule of the prostate that is being removed.  During surgery many of these nerves are damaged or lost although the surgeon does his best to preserve as much as he can.  These nervers are what enables a man to get and maintain an erection sufficient for penetration.  The QOL issues for surgical removal of the prostate can be significant and include incontinence, penile atrophy, and ED.  Frequently these conditions diminish over time but often they do not.  If you read back through several months of postings on this site you will see the entire range of potential effects on QOL.  Radiation treatments also carry risks but statistically they have a better QOL record with respect to incontinence and ED by wide margins.  Both surgical removal and radiation treatment have roughly the same long term success factors for preventing recurrence so it really does come down to choosing based on quality of life.

I hope that you and your husband take the time to consult with experts in radiation oncology as well as surgery to gain a full perspective of the range of options open to your husbnd for treatment.  It is likely that each expert you visit will give you wildly different recommendations.  Surgeons tend to push hard for removal.  That's what they do for a living.  Radiation oncologists obviously have a vested interest in their own specialty.  You and your husband need to continue your education on these matters through your own research and reading and ask probing questions during your consultations.

FYI, I was diagnosed with a Gleason 6 cancer in 2010 although not as extensive as your husband's.  After much research and consultation I elected a form of SBRT radiation.  End result is not side affects at all and no apparent cancer.

Best wishes for you both as you start this journey and I hope that whatever treatment course you may choose is best for you.

 

K

 

SMZ

Kongo said:

Confusion Reigns

Dear SMZ,

I am sorry to read of your husband's diagnosis.  In the begining there is a flood of new and confusing information from many sources.  It is hard to figure it all out.  From what I read in your post I believe you may be confusing "risk" and "staging."  Staging is a rather straight forward protocol based on a variety of factors such as Gleason score, extent of cancer within the prostate, whether it has spread to the lymph nodes or not, whether or not it has evolved to a distant metastasis, the physical characteristics of the DRE and so forth.  Despite the fact that it is present on both lobes of the prostate, I would grade your husband's stage as a T1c since it was discovered as a result of increasing PSA (I assume) and the DRE was "unremarkable."  The confusion seems to occur about T2c when it mentions both lobes but that, in my opinion, is also in conjunction with an abnormal DRE.

The risk associated with prostate cancer is often catergorized as "low risk," "intermediate risk," or "advanced risk." and these are a function of the Gleason score.  In your case a Gleason score of 6 qualifies as a "low risk" condition.  A Gleason 7 (either a 3+4 or 4+3 grade) is considered intermediate.  Gleason scores of 8 or higher are considered advanced risk cases.

The Gleason score is a subjective evaluation on the part of the pathologist.  I would urge you to get a second opinion from a pathologist that specializes in looking at prostate cancer biopsies.  Your diagnosing doctor should be able to point you in the right direction and give you details on how to do this.  Johns Hopkins is one of the most common places men with a prostate cancer diagnosis send their samples to.

Nerve sparing surgery for a Gleason 6 that is still contained within the prostate should not be a problem if that is the path you choose to follow.  The term "nerve sparing" is a bit of a misnomer.  In fact the nerves they are talking about are about the width of a human hair and line the outer capsule of the prostate that is being removed.  During surgery many of these nerves are damaged or lost although the surgeon does his best to preserve as much as he can.  These nervers are what enables a man to get and maintain an erection sufficient for penetration.  The QOL issues for surgical removal of the prostate can be significant and include incontinence, penile atrophy, and ED.  Frequently these conditions diminish over time but often they do not.  If you read back through several months of postings on this site you will see the entire range of potential effects on QOL.  Radiation treatments also carry risks but statistically they have a better QOL record with respect to incontinence and ED by wide margins.  Both surgical removal and radiation treatment have roughly the same long term success factors for preventing recurrence so it really does come down to choosing based on quality of life.

I hope that you and your husband take the time to consult with experts in radiation oncology as well as surgery to gain a full perspective of the range of options open to your husbnd for treatment.  It is likely that each expert you visit will give you wildly different recommendations.  Surgeons tend to push hard for removal.  That's what they do for a living.  Radiation oncologists obviously have a vested interest in their own specialty.  You and your husband need to continue your education on these matters through your own research and reading and ask probing questions during your consultations.

FYI, I was diagnosed with a Gleason 6 cancer in 2010 although not as extensive as your husband's.  After much research and consultation I elected a form of SBRT radiation.  End result is not side affects at all and no apparent cancer.

Best wishes for you both as you start this journey and I hope that whatever treatment course you may choose is best for you.

 

K

 

Second Opinions

Thanks Kongo,

Indeed things are very confusing in this particular type of cancer! I am a BC survivor and it seemed like a walk in the park, as far as the diagnoses! You men have a lot going on in the area of the prostate, where we are usually only dealing with fatty tissue in early stage BC. 

We are going to send the slides to MSKCC for a second opinion. Our doctors here are reluctant to give us referrals for second opinions and I have had to do a lot of DD to find other urologists and radiation oncologists for us to see. We have seen 2 other surgeons beside the diagnosing surgeon and 2 radiation oncologists. I have to say, they were very fair towards each other's specialties. We've gotten a real education, although a bit one-sided surgery wise, as the da Vinci surgery seems to be the only ticket in this town. We were strongly advised to have open RP due to the extent of disease by a connection at Johns Hopkins. He felt low grade, low volume could have great outcomes through robotic or open, but that is not quite our case. Since Asia seems to be so invested in the daVinci robotic surgery, we are not that comfortable staying here. One thing that was impressed on us by this JH surgeon is if we can find a surgeon who has experience in both open and robotic we will have found a better surgeon. 

We have pretty much decided to go the surgical route owing to age and volume of disease. From what we understand, it is better to leave radiation for salvage if necessary, and hopefully that "if" won't be needed. I know my husband would rather the prostate be removed, he lost his first wife to BC and then had to see me though that same Dx so he has strong feelings towards cancer.

Most of the messages I've read and in fact, most of the men we've met who have had a radical prostatectomy, all tend to have had low volume disease so their outcomes seem pretty good. It is great to hear that incontenence lessens over time and in some, erectile function returns for these men. I haven't really read the outcomes of men in similar situations as my husband, high volume, contained (we hope) disease. When I read about ED and more serious contenence issues, the men tend to be well into their 70s. We seem to be some where inbetween...

Just curious if there are other men who have had a similar Dx who have been able to preserve nerves and attain clear margins? 

Many thanks in advance for any comments...

 

 

tarhoosier

Based on failure

I, for one, do not understand the choice of treatment based on failure of the preferred selection. If one believes that the chosen treatment will fail and there will be a salvage option which can deal with the excess tumor, then why not just choose that other option at the beginning and dispense with the known and likely side effects of, in this case, surgery? This "second" option is so good that it can provide cure as a second choice then it can certainly provide success as a first choice and eliminate other morbidity.

This may not apply if access to radiation is imited.

VascodaGama

Clinical Stage

 

 

 

 

SMZ

 

I agree with Tarhoosier. Why should your husband do surgery in the hope of having a second treatment chance for cure and still hope to keep QoL (intact) ?

 

Most of us know that such is not so real or true. All forms of treatment for prostate cancer cause side effects some quite nasty, which make it proper to think in  chosing a treatment based on what one can accept for the rest of their life. Cure is "far" to reach if the case is advanced, and often we see ourselves treating and caring more for the side effects than the cancer itself. The side effects from a treatment will superimpose on the ones from second and third treatments, and that becomes permanent.

 

I would recommend that your husband considers to get only one treatment from the start, and for that he should try to chose the best that may address his case better. Radicals (surgery and radiation) are the only ones providing cure but the cancer must be confined to the gland or localized. The whole cancerous tissue must be dissected or its DNA destroyed (burned out). It is logical therefore that your husband procures the best diagnosis he can to obtain a due Clinical Stage.

 

You have not share here any info regarding symptoms or about the reason leading him to get a biopsy but I presume that it was the negative DRE in an high of PSA setting. The term "Intermediate" could be Gs=7 not the Gs 6 or an Gs 6 advanced (it could be due to positive margins found in the cores but not commented to you).
Typical cases of micrometastases relate to large volume of cancer (10 positive cores out of 12) in a negative DRE and high PSA. These are cases difficult to treat with surgery alone. You may discuss with the doctor on the above.

 

I think you have chosen well for second opinions at MSKCC and JH. I would recommend you to inquire about image studies and to have them done in 3 tesla MRI equipments with the latest contrast agents.

 

Prepare your own list of questions and care for biased opinions.

 

Wishing your husband luck in his journey.

 

 

 

Welcome to the board.

 

VGama

 

 

 

 

 

 

SMZ

Update

We have sent my husband's slides and MRI results to MSKCC are will fly to NY next week for a consult and treatment options. At least we have a place to stay, so the costs should be manageable (we will be "Self-pay" as our insurance is not worldwide). I wonder if the pathology findings at MSK will differ from the local Hong Kong path report... 

We had so many different opinions here in Hong Kong; 2 doctors (1 Urologist and 1 Radiation Oncologist) say they would "Stage" it as T2c, the other 2 doctors, (1 Urologist and 1  Radiation Oncologist) state it is "Intermediate Stage". No one used the word "risk" but that may be a language issue. All have said that if we choose radiation and there is a recurrence  surgery would not be an option. This is why my husband is considering surgery. All doctors were very professional and knowledgeable. The surgeons here only perform 1-2 robotic assisted RPs per month. That was a major concern.

Three of the doctors found his DRE to be "not significant". The Head of Urology at our major teaching hospital did note "indurated left side nodule" and suggestion of extracapsular disease. Was his the "educated finger"?  In any case, they don't usually see prostate cancer here as much as the US as men don't like to discuss or be tested for any cancer and it is usually found at a later stage after symptoms occur.

 A urologist in the US with ties to JHs noted that my husband "has very high volume prostate cancer and the fact that it is grade 3 will not preclude metastases which could have already occurred."  (No one out here suggested that.)  He also suggests that with the amount of disease present, he would opt for open radical prostatectomy.  

At least in the US we will have access to more experience. Fingers crossed this is indeed "low risk". I haven't read any personal accounts of Gleason 3 disease with PSA 8 and such high volume disease, so I am, of course nervous.

​Thank you all for weighing in on this. 

yankeefan

SMZ said:

Update

We have sent my husband's slides and MRI results to MSKCC are will fly to NY next week for a consult and treatment options. At least we have a place to stay, so the costs should be manageable (we will be "Self-pay" as our insurance is not worldwide). I wonder if the pathology findings at MSK will differ from the local Hong Kong path report... 

We had so many different opinions here in Hong Kong; 2 doctors (1 Urologist and 1 Radiation Oncologist) say they would "Stage" it as T2c, the other 2 doctors, (1 Urologist and 1  Radiation Oncologist) state it is "Intermediate Stage". No one used the word "risk" but that may be a language issue. All have said that if we choose radiation and there is a recurrence  surgery would not be an option. This is why my husband is considering surgery. All doctors were very professional and knowledgeable. The surgeons here only perform 1-2 robotic assisted RPs per month. That was a major concern.

Three of the doctors found his DRE to be "not significant". The Head of Urology at our major teaching hospital did note "indurated left side nodule" and suggestion of extracapsular disease. Was his the "educated finger"?  In any case, they don't usually see prostate cancer here as much as the US as men don't like to discuss or be tested for any cancer and it is usually found at a later stage after symptoms occur.

 A urologist in the US with ties to JHs noted that my husband "has very high volume prostate cancer and the fact that it is grade 3 will not preclude metastases which could have already occurred."  (No one out here suggested that.)  He also suggests that with the amount of disease present, he would opt for open radical prostatectomy.  

At least in the US we will have access to more experience. Fingers crossed this is indeed "low risk". I haven't read any personal accounts of Gleason 3 disease with PSA 8 and such high volume disease, so I am, of course nervous.

​Thank you all for weighing in on this. 

You are wise to come to the states for advice and treatment....re surgeons only doing 1-2 surgeries per month...that is way too few to be proficient. Should you choose surgery, either robotic or open, the results will depend in large part on the skill of your surgeon....so, if you go that route, pick someone with a good reputation that has done hundreds/thousands of these procedures.

Explore all the options, not just surgery...each case is slightly different and it may be that radiation (or something else) is a better option in your husband's case. Obviously, with 10 out of 12 cores positive you need to do someting...just waiting will only make the matter worse and increase the odds that the cancer has spread beyond the prostate.

At he end of the day, you need to get the best advice you can and hope for the best...getting advice and treatment from experts increases your chances of getting the best result.

Not sure if you said whether you husband's prostate is enlarged or not. If it is too large, most surgeons would opt for the open procedure vice robotic/laproscopic.

I had an open prostatectomy in April at JH (my prostate was quite large). Since you are paying for this without help from insurance, I will offer that the open (retropubic prostatectomy) procedure is generally cheaper than the robotic procedure...for comparison, my costs at JH would have been roughly $20,000 total (surgeon, assistant surgeon, anesthesiologist, OR costs, hospital room and board for one night, plus incidentals) had I not had insurance. 

all the best...

tarhoosier

MSK?

When you arrive at MSK I hope you have a chance to ask questions in addition to an opinion on slides. I believe, if MSK concurs with previous pathology in the main, they will make treatment suggestion(s) and you can query them directly. If he (the patient) is convinced that surgery is the way to go for long term disease control what are the likely side effects? What is the likely incidence of SE's at any random surgical center compared to the very top such as MSK?  How often does a man of his age and morbidity (general health and conditions) suffer impotence and incontinence? What is the general ratio of men with long term side effects reflected in literature and research? All this is for a surgical option.

Please also ask about surgery after radiation. It is my opinion that current radiation done well with top equipment and personnel allows for surgery afterwards, in some cases. I believe that it is performed at MSK.

It is certainly not true that surgery cannot be performed after RT for there are many cases of it.

See here for the MSK salvage surgery description

http://www.mskcc.org/cancer-care/adult/prostate/radical-prostatectomy

elpasorudy

Cancer free for seven years

I was diagnosed with prostate cancer in December of 2005, three positive tissue samples, two were suspicious. PSA, which had been steadily increasing over the years, was a 5.65. Gleason score was a 6. My urologist, who did the cut-you-open surgery, said that his way was the gold standard. But I decided to look for a surgeon who would do the procedure robotically or laparoscopically, which is said to be less invasive. My doctors reassured me that prostate cancer is normally slow growing. I had surgery in March of 2006 at the Moffitt Cancer Center in Tampa. Dr. Pow-Sang, who had done thousands of laparscopic operations, did my procedure. I was sent home from the hospital after three days. I spent one day in intensive care because I was slow to wake up. My prostate was very enlarged, and there was some difficulty in getting it out, so the operation ran longer than usual. The pathology report upgraded my Gleason score to a 3 +4 = 7. There was one cancer cell on the margin, which they said would increase my chances of the cancer returning by 10 percent. I remain prostate cancer free, with my PSA listed as undectable. Although I had nerve-sparing surgery, I suffer from erectile dysfunction. Viagara is effective for me. I also experience mild incontinence. In 2010, I had bladder neck surgery because scar tissue from the prostate surgery was closing the bladder opening. That was an outpatient procedure, but it slightly increased the incontinence. I was told by the Cleveland Clinic that I was a poor candidate for radiation because the cancer was on both lobes. If anyone in your family has ever had prostate cancer, that increases your chances of getting it by 50 percent. Make sure your male children and sibings are aware of that. My father had his prostate cancer treated with radiation at the age of 60. He died at 88 from Alzheimer's Disease. The prostate cancer never returned. My brother Greg had surgery; my brother Jim had radioactive seeds. Both are doing. Greg has some incontinence. Each treatment has pros and cons. I am happy with my decision. There are some good web sites and discussion boards. One is Healing Well. I will post the web addresses for you tomorrow. Wishing you the best. Feel free to call on me for any feedback.

mrspjd

elpasorudy said:

Cancer free for seven years

I was diagnosed with prostate cancer in December of 2005, three positive tissue samples, two were suspicious. PSA, which had been steadily increasing over the years, was a 5.65. Gleason score was a 6. My urologist, who did the cut-you-open surgery, said that his way was the gold standard. But I decided to look for a surgeon who would do the procedure robotically or laparoscopically, which is said to be less invasive. My doctors reassured me that prostate cancer is normally slow growing. I had surgery in March of 2006 at the Moffitt Cancer Center in Tampa. Dr. Pow-Sang, who had done thousands of laparscopic operations, did my procedure. I was sent home from the hospital after three days. I spent one day in intensive care because I was slow to wake up. My prostate was very enlarged, and there was some difficulty in getting it out, so the operation ran longer than usual. The pathology report upgraded my Gleason score to a 3 +4 = 7. There was one cancer cell on the margin, which they said would increase my chances of the cancer returning by 10 percent. I remain prostate cancer free, with my PSA listed as undectable. Although I had nerve-sparing surgery, I suffer from erectile dysfunction. Viagara is effective for me. I also experience mild incontinence. In 2010, I had bladder neck surgery because scar tissue from the prostate surgery was closing the bladder opening. That was an outpatient procedure, but it slightly increased the incontinence. I was told by the Cleveland Clinic that I was a poor candidate for radiation because the cancer was on both lobes. If anyone in your family has ever had prostate cancer, that increases your chances of getting it by 50 percent. Make sure your male children and sibings are aware of that. My father had his prostate cancer treated with radiation at the age of 60. He died at 88 from Alzheimer's Disease. The prostate cancer never returned. My brother Greg had surgery; my brother Jim had radioactive seeds. Both are doing. Greg has some incontinence. Each treatment has pros and cons. I am happy with my decision. There are some good web sites and discussion boards. One is Healing Well. I will post the web addresses for you tomorrow. Wishing you the best. Feel free to call on me for any feedback.

Know your enemy (PCa)

Hi SMZ,

 

Welcome to the PCa forum. I'm sorry to read of any new PCa diagnoses. Your husband's dx is no exception. Glad it was found sooner rather than later. 

 

Determining a clinical risk level and Tumor stage BEFORE evaluating therapeutic options & making tx decisions is critical in order to avoid unnecessary or inadequate tx.  Much of the info in your posts re risk & staging is either missing or contradictory and, IMHO, needs to be confirmed or clarified prior to deciding on a tx plan. Hopefully you will be able to obtain more definitive info/answers once you arrive in the US. 

 

Gleason score is only ONE factor in determining PCa risk level. Additional clinical factors that contribute to risk stratification may include: % of total prostate tumor volume, PSA @ dx and PSA history (including PSAdt, PSAv), perineural invasion (PNI), nodule or areas of firmness found on DRE, results of diagnostic imaging studies that might provide add'l info re Tumor staging (T1, 2, 3, 4) &/or a history of familial PCa in 1st degree family member(s). 

 

You indicate that there are MRI "results," but it is unclear if it was an EMRI (Endorectal) using 3Tesla imaging, what the findings are, or if other imaging studies were done.  When medically indicated, as in your DH's case to rule out local (ECE) or distal disease, preliminary imaging studies may consist of a conventional pelvic CT and a bone scan (both are often negative unless PCa is very advanced), color Doppler ultrasound (CDU). Further tests may include an EndorectalMRI.  

 

Modern diagnostic imaging technology is not 100% accurate 100% of the time nor can it detect micro metastases. However, with the stats you've shared to date, the results of a 3Tesla EMRI to rule out ECE may play an important role in calculating risk vs benefit when evaluating primary tx options that might have the best odds of successful outcome with the fewest short & long term side effects. It did for my husband, PJD. If adjuvant/salvage RP or RT is needed due to rising PSA post primary tx, keep in mind that it may not only add new tx related SEs, but also may exacerbate lingering SEs of the primary PCa tx. As Tarhoosier pointed out so well, selection of primary  PCa tx should be based on best calculations for successful outcome with curative intent & not on the basis of possible tx failure with salvage options. 

 

The Bx info you posted indicates the tumor volume is approximately 26%.  While that is not low, it's not necessarily high volume either.  I wonder what the prostate size/volume is (usually shown on the Bx report in cc or gm).  In addition to RP & RT tx options, has any medical specialist discussed a combination of short term ADT and RT as a primary tx option? I strongly recommend obtaining an independent consult with an experienced and knowledgeable oncologist who has a speciality in PCa. 

 

I wonder if any Bx core(s) were identified with a Gleason >6 or if PNI was noted on the initial Bx report.  A PNI finding on Bx may indicate a greater likelihood of ECE (this was the case for PJD).  IMO, most local path labs tend to under-grade PCa Gleason scores or even miss PNI.  There are only a handful of expert path labs in the US that specialize in PCa Bx specimen analysis--JH is one of them.  I'm surprised that your consult/connection @ JH didn't recommend their world renown PCa path lab (Epstein) for your 2nd opinion Bx analysis. With 10/12 cores positive, I wouldn't be shocked if a JH path lab 2nd opinion found a Gleason =/>7, although I hope this is not the case.  However, glad that you're obtaining a 2nd opinion path analysis on Bx cores elsewhere (MSK). If possible, you might consider also sending the cores to JH's path lab for their analysis.  

 

For many of us couples, this PCa journey is an emotional roller coaster ride for both the patient & his wife.  My husband (healthy, fit, active) was dx'd 3 yrs ago: 67yy, nodule/firmness found on DRE, PSA Hx <2.8 (no rapid doubling). Local lab Bx report: G=6, 9/12 cores positive (most with 50-100% PCa), PNI identified. Sent biopsy core slides for 2nd opinion to JH path lab for expert analysis. New Bx path report downgraded (worse) the initial G6 to G7, confirmed PNI, and further identified total PCa tumor volume to be 75%. $H!t! ...Moving on...Conventional pelvic CT w/contrast and bone scan both negative for mets. Further testing with CDU and later, 3Tesla EMRI, found ECE (extra capsular extension). Initial PCa staging changed from low/int risk to high risk T3 stage, locally advanced, high volume.  Crap!  Regrouped, took several big deep breaths (mindful meditation helps) and moved on again...

 

After almost 3 months of DD, researching, talking with survivors in established face2face PCa networking groups that welcome women, diagnostic tests and dozens (literally) of expert medical consults with uro's, surgeons, RO's AND PCa oncologists, PJD decided on an aggressive 3 part (multi-modal) primary tx plan. He completed all txs Jan 2011, is healthy & doing well.  PSA has been consistently low. Given his T3 high risk dx and the very nature of this insidious disease, we are cautiously optimistic. We are grateful for each cancer-free day and continue to remain hopeful for the future. 

 

Please take time to gather as much staging info & data as possible, do the homework/research, then seek consults & opinions from skilled/experienced medical experts at several different medical centers of excellence, if at all possible. Carefully evaluate and reevaluate which tx option(s) have the greatest potential for long term PCa-free survival with the least short/long term side effects.  Ask the questions posted by Tarhoosier and add your own. Then, take some deep breaths, make an educated/informed PCa tx decision that's right for you, and don't look back. 

 

Best of luck to you both. 

 

mrs pjd

Wife of a T3 stage PCa Survivor

ob66

mrspjd said:

Know your enemy (PCa)

Hi SMZ,

 

Welcome to the PCa forum. I'm sorry to read of any new PCa diagnoses. Your husband's dx is no exception. Glad it was found sooner rather than later. 

 

Determining a clinical risk level and Tumor stage BEFORE evaluating therapeutic options & making tx decisions is critical in order to avoid unnecessary or inadequate tx.  Much of the info in your posts re risk & staging is either missing or contradictory and, IMHO, needs to be confirmed or clarified prior to deciding on a tx plan. Hopefully you will be able to obtain more definitive info/answers once you arrive in the US. 

 

Gleason score is only ONE factor in determining PCa risk level. Additional clinical factors that contribute to risk stratification may include: % of total prostate tumor volume, PSA @ dx and PSA history (including PSAdt, PSAv), perineural invasion (PNI), nodule or areas of firmness found on DRE, results of diagnostic imaging studies that might provide add'l info re Tumor staging (T1, 2, 3, 4) &/or a history of familial PCa in 1st degree family member(s). 

 

You indicate that there are MRI "results," but it is unclear if it was an EMRI (Endorectal) using 3Tesla imaging, what the findings are, or if other imaging studies were done.  When medically indicated, as in your DH's case to rule out local (ECE) or distal disease, preliminary imaging studies may consist of a conventional pelvic CT and a bone scan (both are often negative unless PCa is very advanced), color Doppler ultrasound (CDU). Further tests may include an EndorectalMRI.  

 

Modern diagnostic imaging technology is not 100% accurate 100% of the time nor can it detect micro metastases. However, with the stats you've shared to date, the results of a 3Tesla EMRI to rule out ECE may play an important role in calculating risk vs benefit when evaluating primary tx options that might have the best odds of successful outcome with the fewest short & long term side effects. It did for my husband, PJD. If adjuvant/salvage RP or RT is needed due to rising PSA post primary tx, keep in mind that it may not only add new tx related SEs, but also may exacerbate lingering SEs of the primary PCa tx. As Tarhoosier pointed out so well, selection of primary  PCa tx should be based on best calculations for successful outcome with curative intent & not on the basis of possible tx failure with salvage options. 

 

The Bx info you posted indicates the tumor volume is approximately 26%.  While that is not low, it's not necessarily high volume either.  I wonder what the prostate size/volume is (usually shown on the Bx report in cc or gm).  In addition to RP & RT tx options, has any medical specialist discussed a combination of short term ADT and RT as a primary tx option? I strongly recommend obtaining an independent consult with an experienced and knowledgeable oncologist who has a speciality in PCa. 

 

I wonder if any Bx core(s) were identified with a Gleason >6 or if PNI was noted on the initial Bx report.  A PNI finding on Bx may indicate a greater likelihood of ECE (this was the case for PJD).  IMO, most local path labs tend to under-grade PCa Gleason scores or even miss PNI.  There are only a handful of expert path labs in the US that specialize in PCa Bx specimen analysis--JH is one of them.  I'm surprised that your consult/connection @ JH didn't recommend their world renown PCa path lab (Epstein) for your 2nd opinion Bx analysis. With 10/12 cores positive, I wouldn't be shocked if a JH path lab 2nd opinion found a Gleason =/>7, although I hope this is not the case.  However, glad that you're obtaining a 2nd opinion path analysis on Bx cores elsewhere (MSK). If possible, you might consider also sending the cores to JH's path lab for their analysis.  

 

For many of us couples, this PCa journey is an emotional roller coaster ride for both the patient & his wife.  My husband (healthy, fit, active) was dx'd 3 yrs ago: 67yy, nodule/firmness found on DRE, PSA Hx <2.8 (no rapid doubling). Local lab Bx report: G=6, 9/12 cores positive (most with 50-100% PCa), PNI identified. Sent biopsy core slides for 2nd opinion to JH path lab for expert analysis. New Bx path report downgraded (worse) the initial G6 to G7, confirmed PNI, and further identified total PCa tumor volume to be 75%. $H!t! ...Moving on...Conventional pelvic CT w/contrast and bone scan both negative for mets. Further testing with CDU and later, 3Tesla EMRI, found ECE (extra capsular extension). Initial PCa staging changed from low/int risk to high risk T3 stage, locally advanced, high volume.  Crap!  Regrouped, took several big deep breaths (mindful meditation helps) and moved on again...

 

After almost 3 months of DD, researching, talking with survivors in established face2face PCa networking groups that welcome women, diagnostic tests and dozens (literally) of expert medical consults with uro's, surgeons, RO's AND PCa oncologists, PJD decided on an aggressive 3 part (multi-modal) primary tx plan. He completed all txs Jan 2011, is healthy & doing well.  PSA has been consistently low. Given his T3 high risk dx and the very nature of this insidious disease, we are cautiously optimistic. We are grateful for each cancer-free day and continue to remain hopeful for the future. 

 

Please take time to gather as much staging info & data as possible, do the homework/research, then seek consults & opinions from skilled/experienced medical experts at several different medical centers of excellence, if at all possible. Carefully evaluate and reevaluate which tx option(s) have the greatest potential for long term PCa-free survival with the least short/long term side effects.  Ask the questions posted by Tarhoosier and add your own. Then, take some deep breaths, make an educated/informed PCa tx decision that's right for you, and don't look back. 

 

Best of luck to you both. 

 

mrs pjd

Wife of a T3 stage PCa Survivor

mrs pjd

Great response. Good to hear mr pjd is doing so well. Loved the emphatic outbursts with bad results. Been there, done that. The pity party can only last so long.

mr pjd is one lucky guy, as am I.

Cheers, Bob

elpasorudy

Here are a couple of excellent web site: "You Are Not Alone" (yananow.org), first hand stories categorized by treatment method; and Phoenix5 (phoenix5.org), much good information and listings of other sites ...

mrspjd

ob66 said:

mrs pjd

Great response. Good to hear mr pjd is doing so well. Loved the emphatic outbursts with bad results. Been there, done that. The pity party can only last so long.

mr pjd is one lucky guy, as am I.

Cheers, Bob

Thanks, Bob

Thanks, Bob

 

Your kind words & support have meant a lot throughout this journey. 

 

BTW, I'm the lucky one. As is your wife, Judy. 

 

Cheers right back @ u!

M

SMZ

elpasorudy said:

Here are a couple of excellent web site: "You Are Not Alone" (yananow.org), first hand stories categorized by treatment method; and Phoenix5 (phoenix5.org), much good information and listings of other sites ...

UPDATE since arrival in United States, NYC

Dear All,

 

Wow, I can not thank you enough for the time you have taken to give us your combined wisdom!

 

Now I feel I must update you on our progress... (Mrs PJD, you are so right about the roller coaster ride!)...

 

Just before we left Hong Kong , we did another PSA test (July 17), which was 5.96, lower than the May 3rd score of 8.65. Hmmmm.... at least it is not climbing.

 

We arrived in NYC last Thursday night (JUN 25) and had our first appointment at MSKCC with 

​a pre-​

assigned 

​Robotics ​

surgeon

 at 7:30am

 Friday. 

​Note, we did not request anything more than their analysis of our biopsy slides and a treatment plan. We assumed surgery would be offered but shouldn't we have been counseled as to our options based on test results? We did fly all the way from Hong Kong for their expertise.​

W​

e

​ had​

 sent

​ the biopsy​

 slides 10 days prior

​ to our departure​

 and the

​ hospital​

 confirmed receipt. We expected to 

​meet​

 their 

​doctors​

 who would have t

​he​

 updated pathology report. 

The

​ Robotics surgeon​

 w

​as​

 

​very upbeat about positive outcome​

 and scheduled surgery for Monday, Aug. 5

​, ordered a Tesla 3 MRI. 

As I tried to ask questions as to 

​my husband's​

 path report we realized he was looking at the original report we emailed from Hong Kong. It turns out, his RN had postponed submitting the 

​biopsy ​

slides

​ for testing​

 as the original report did not show my husband's birth date! (In HONG KONG, they go by HK ID card numbers, not birth-dates) By this time they had been in possession of our slides for 2 weeks with no action. Do you think someone could have mentioned this to us and asked for a revised report??? They promised to send the slides for testing this week, which takes 7-10 days. "Not a problem". After a DRE, in which  there was a small area of firmness on the left side, his prostate felt normal.

 We went home, jetlagged and exhausted.

​ This surgeon is on holiday this week and would be back for surgery on Monday without having had another meeting with us to discuss the results of the MRI he ordered and the results of their expert pathology ​on the slides. 

 

We had Saturday and Sunday to think about all this. There was  also the issue of expense. We have been pushing to get a quotation since before we left. As of Monday, it had still not been given. We are self-pay, this has to be a consideration.

​ The MRI was scheduled for Tuesday morning, not at MSK as they are over-inundated and were outsourcing. ​

 

​We have a friend 

here in NYC who organized an appointment with his urologist for comparison. Dr. G is

​, ​

from what I have read, very well respected

​​

. We saw him on Monday, the MRI scheduled for Tuesday morning. After a DRE, he stated that the prostate is normal in size and the firmness does not indicate cancer but of course, having the biopsy

​,​

 we know there is cancer. He said we were lucky to have had the biopsy when we did, it is very slow growing, has been there for a long time, thus the Gleason 6, and that we should postpone the surgery until the MRI and updated pathology reports are in. 

​ We agreed. (Who wants to have surgery with a surgeon who has not discussed the updated reports with the patient before he operates?) He cautioned that we have other options and mentioned brachytherapy (this from a urologist!). This has never been offered to us. ​He set up an appointment with a radiation oncologist who is at the top of his class in perfecting this treatment so that we can be better informed. Dr. G. also said that if we choose RALP, there are two surgeons he'd suggest who have more expertise than that of MSK's surgeons, and because they are with other hospitals, the overall price may be lower.

 

Now, price is a major consideration for people who are self-pay, especially in a level playing field. MSK up to this point, had not given us a cost estimate. We asked when we first contacted them that we need this information. When we called to postpone the surgery, everything changed. The International Center Coordinator called that afternoon and followed up with an email of their charges. I quote: 

 

"

Laparoscopic Surgical Prostatectomy, Retropubic Radical, Incl Nerve Sparing, Includes Robotic Assistance, Robotically (Si-Model) Assisted Procedure, Laparoscopy W/ Bil Total Pelvic Lymphadenectomy

​................ $76,300!! 

 

$ 38,700 for: Hospital Charges $ 37,600 for: Physician Charges 

 

​I don't think these fees should be a state secret.​

I think we will both die of heart attacks before we have to worry about QoL issues in PCa treatments!!  No offer to negotiate price, no offer to help understand these prices at all. I do know that this includes 1 night in hospital.

 

Now I have something to comparison shop with. I called Johns Hopkins and they could immediately quote for RALP (as above but with a 2 night stay in hospital)..  $30-32,000. We understand these estimates are always on the conservative side. Open radicals start at $20,000. ​

 

​We are still waiting for the biopsy slides to come back.

 

We did consult with a cutting-edge radiation oncologist who was recommended by Dr. G. on Tuesday after the MRI (the MRI reports now being sent to MSK and Dr. G). We'll call him Dr. B (for brachytherapy)​. By the time we got to his office, Dr. G's office had sent all our history and test results that we hand carried, plus the MRI scan and report from that morning! Now, I am impressed... 3 different offices communicating so seamlessly after trying to get blood out of stone at MSK.  

Another DRE (my poor husband...) again, unremarkable. He read the MRI report, which we had yet to see, and it showed no extension of disease and looked to be contained within the prostate. T1c.  

We then discussed what his opinion and treatment options would be. My husband would be a good candidate for brachytherapy and he has had great success with his technique. He is passionate about giving men options other than radical surgery. We learned a lot. He also stated that my husbands prostate is not enlarged and if he we wanted  RALP, not having an enlarged prostate makes the surgery easier. Again, he suggested other higher volume surgeons. Dr. B works out of Mt Sinai, but he set up an appointment with a surgeon who is head of Lenox Hill Urology and has a high success rate with da Vinci. We will meet him this Friday. I'd like to know his hospital charges. 

 

All in all, it sounds like we are in a good position health wise. My husband's cancer may be moderately high volume, but very treatable and we are being advised by everyone except MSK to look at all available treatments other than just radical surgery.

 

We are giving serious consideration to brachytherapy. 

 

​We are still waiting for the biopsy slides.....

 

 

Best to all,

 

SMZ

​

 

-- 

"Life is a series of interruptions interrupted by interruptions."

 

SMZ

SMZ said:

UPDATE since arrival in United States, NYC

Dear All,

 

Wow, I can not thank you enough for the time you have taken to give us your combined wisdom!

 

Now I feel I must update you on our progress... (Mrs PJD, you are so right about the roller coaster ride!)...

 

Just before we left Hong Kong , we did another PSA test (July 17), which was 5.96, lower than the May 3rd score of 8.65. Hmmmm.... at least it is not climbing.

 

We arrived in NYC last Thursday night (JUN 25) and had our first appointment at MSKCC with 

​a pre-​

assigned 

​Robotics ​

surgeon

 at 7:30am

 Friday. 

​Note, we did not request anything more than their analysis of our biopsy slides and a treatment plan. We assumed surgery would be offered but shouldn't we have been counseled as to our options based on test results? We did fly all the way from Hong Kong for their expertise.​

W​

e

​ had​

 sent

​ the biopsy​

 slides 10 days prior

​ to our departure​

 and the

​ hospital​

 confirmed receipt. We expected to 

​meet​

 their 

​doctors​

 who would have t

​he​

 updated pathology report. 

The

​ Robotics surgeon​

 w

​as​

 

​very upbeat about positive outcome​

 and scheduled surgery for Monday, Aug. 5

​, ordered a Tesla 3 MRI. 

As I tried to ask questions as to 

​my husband's​

 path report we realized he was looking at the original report we emailed from Hong Kong. It turns out, his RN had postponed submitting the 

​biopsy ​

slides

​ for testing​

 as the original report did not show my husband's birth date! (In HONG KONG, they go by HK ID card numbers, not birth-dates) By this time they had been in possession of our slides for 2 weeks with no action. Do you think someone could have mentioned this to us and asked for a revised report??? They promised to send the slides for testing this week, which takes 7-10 days. "Not a problem". After a DRE, in which  there was a small area of firmness on the left side, his prostate felt normal.

 We went home, jetlagged and exhausted.

​ This surgeon is on holiday this week and would be back for surgery on Monday without having had another meeting with us to discuss the results of the MRI he ordered and the results of their expert pathology ​on the slides. 

 

We had Saturday and Sunday to think about all this. There was  also the issue of expense. We have been pushing to get a quotation since before we left. As of Monday, it had still not been given. We are self-pay, this has to be a consideration.

​ The MRI was scheduled for Tuesday morning, not at MSK as they are over-inundated and were outsourcing. ​

 

​We have a friend 

here in NYC who organized an appointment with his urologist for comparison. Dr. G is

​, ​

from what I have read, very well respected

​​

. We saw him on Monday, the MRI scheduled for Tuesday morning. After a DRE, he stated that the prostate is normal in size and the firmness does not indicate cancer but of course, having the biopsy

​,​

 we know there is cancer. He said we were lucky to have had the biopsy when we did, it is very slow growing, has been there for a long time, thus the Gleason 6, and that we should postpone the surgery until the MRI and updated pathology reports are in. 

​ We agreed. (Who wants to have surgery with a surgeon who has not discussed the updated reports with the patient before he operates?) He cautioned that we have other options and mentioned brachytherapy (this from a urologist!). This has never been offered to us. ​He set up an appointment with a radiation oncologist who is at the top of his class in perfecting this treatment so that we can be better informed. Dr. G. also said that if we choose RALP, there are two surgeons he'd suggest who have more expertise than that of MSK's surgeons, and because they are with other hospitals, the overall price may be lower.

 

Now, price is a major consideration for people who are self-pay, especially in a level playing field. MSK up to this point, had not given us a cost estimate. We asked when we first contacted them that we need this information. When we called to postpone the surgery, everything changed. The International Center Coordinator called that afternoon and followed up with an email of their charges. I quote: 

 

"

Laparoscopic Surgical Prostatectomy, Retropubic Radical, Incl Nerve Sparing, Includes Robotic Assistance, Robotically (Si-Model) Assisted Procedure, Laparoscopy W/ Bil Total Pelvic Lymphadenectomy

​................ $76,300!! 

 

$ 38,700 for: Hospital Charges $ 37,600 for: Physician Charges 

 

​I don't think these fees should be a state secret.​

I think we will both die of heart attacks before we have to worry about QoL issues in PCa treatments!!  No offer to negotiate price, no offer to help understand these prices at all. I do know that this includes 1 night in hospital.

 

Now I have something to comparison shop with. I called Johns Hopkins and they could immediately quote for RALP (as above but with a 2 night stay in hospital)..  $30-32,000. We understand these estimates are always on the conservative side. Open radicals start at $20,000. ​

 

​We are still waiting for the biopsy slides to come back.

 

We did consult with a cutting-edge radiation oncologist who was recommended by Dr. G. on Tuesday after the MRI (the MRI reports now being sent to MSK and Dr. G). We'll call him Dr. B (for brachytherapy)​. By the time we got to his office, Dr. G's office had sent all our history and test results that we hand carried, plus the MRI scan and report from that morning! Now, I am impressed... 3 different offices communicating so seamlessly after trying to get blood out of stone at MSK.  

Another DRE (my poor husband...) again, unremarkable. He read the MRI report, which we had yet to see, and it showed no extension of disease and looked to be contained within the prostate. T1c.  

We then discussed what his opinion and treatment options would be. My husband would be a good candidate for brachytherapy and he has had great success with his technique. He is passionate about giving men options other than radical surgery. We learned a lot. He also stated that my husbands prostate is not enlarged and if he we wanted  RALP, not having an enlarged prostate makes the surgery easier. Again, he suggested other higher volume surgeons. Dr. B works out of Mt Sinai, but he set up an appointment with a surgeon who is head of Lenox Hill Urology and has a high success rate with da Vinci. We will meet him this Friday. I'd like to know his hospital charges. 

 

All in all, it sounds like we are in a good position health wise. My husband's cancer may be moderately high volume, but very treatable and we are being advised by everyone except MSK to look at all available treatments other than just radical surgery.

 

We are giving serious consideration to brachytherapy. 

 

​We are still waiting for the biopsy slides.....

 

 

Best to all,

 

SMZ

​

 

-- 

"Life is a series of interruptions interrupted by interruptions."

 

Sorry for the formatting of

Sorry for the formatting of my post above... I have no idea why it saved in such a broken up manner?

Hope you can read it.  

 

 

SMZ

SMZ said:

UPDATE since arrival in United States, NYC

Dear All,

 

Wow, I can not thank you enough for the time you have taken to give us your combined wisdom!

 

Now I feel I must update you on our progress... (Mrs PJD, you are so right about the roller coaster ride!)...

 

Just before we left Hong Kong , we did another PSA test (July 17), which was 5.96, lower than the May 3rd score of 8.65. Hmmmm.... at least it is not climbing.

 

We arrived in NYC last Thursday night (JUN 25) and had our first appointment at MSKCC with 

​a pre-​

assigned 

​Robotics ​

surgeon

 at 7:30am

 Friday. 

​Note, we did not request anything more than their analysis of our biopsy slides and a treatment plan. We assumed surgery would be offered but shouldn't we have been counseled as to our options based on test results? We did fly all the way from Hong Kong for their expertise.​

W​

e

​ had​

 sent

​ the biopsy​

 slides 10 days prior

​ to our departure​

 and the

​ hospital​

 confirmed receipt. We expected to 

​meet​

 their 

​doctors​

 who would have t

​he​

 updated pathology report. 

The

​ Robotics surgeon​

 w

​as​

 

​very upbeat about positive outcome​

 and scheduled surgery for Monday, Aug. 5

​, ordered a Tesla 3 MRI. 

As I tried to ask questions as to 

​my husband's​

 path report we realized he was looking at the original report we emailed from Hong Kong. It turns out, his RN had postponed submitting the 

​biopsy ​

slides

​ for testing​

 as the original report did not show my husband's birth date! (In HONG KONG, they go by HK ID card numbers, not birth-dates) By this time they had been in possession of our slides for 2 weeks with no action. Do you think someone could have mentioned this to us and asked for a revised report??? They promised to send the slides for testing this week, which takes 7-10 days. "Not a problem". After a DRE, in which  there was a small area of firmness on the left side, his prostate felt normal.

 We went home, jetlagged and exhausted.

​ This surgeon is on holiday this week and would be back for surgery on Monday without having had another meeting with us to discuss the results of the MRI he ordered and the results of their expert pathology ​on the slides. 

 

We had Saturday and Sunday to think about all this. There was  also the issue of expense. We have been pushing to get a quotation since before we left. As of Monday, it had still not been given. We are self-pay, this has to be a consideration.

​ The MRI was scheduled for Tuesday morning, not at MSK as they are over-inundated and were outsourcing. ​

 

​We have a friend 

here in NYC who organized an appointment with his urologist for comparison. Dr. G is

​, ​

from what I have read, very well respected

​​

. We saw him on Monday, the MRI scheduled for Tuesday morning. After a DRE, he stated that the prostate is normal in size and the firmness does not indicate cancer but of course, having the biopsy

​,​

 we know there is cancer. He said we were lucky to have had the biopsy when we did, it is very slow growing, has been there for a long time, thus the Gleason 6, and that we should postpone the surgery until the MRI and updated pathology reports are in. 

​ We agreed. (Who wants to have surgery with a surgeon who has not discussed the updated reports with the patient before he operates?) He cautioned that we have other options and mentioned brachytherapy (this from a urologist!). This has never been offered to us. ​He set up an appointment with a radiation oncologist who is at the top of his class in perfecting this treatment so that we can be better informed. Dr. G. also said that if we choose RALP, there are two surgeons he'd suggest who have more expertise than that of MSK's surgeons, and because they are with other hospitals, the overall price may be lower.

 

Now, price is a major consideration for people who are self-pay, especially in a level playing field. MSK up to this point, had not given us a cost estimate. We asked when we first contacted them that we need this information. When we called to postpone the surgery, everything changed. The International Center Coordinator called that afternoon and followed up with an email of their charges. I quote: 

 

"

Laparoscopic Surgical Prostatectomy, Retropubic Radical, Incl Nerve Sparing, Includes Robotic Assistance, Robotically (Si-Model) Assisted Procedure, Laparoscopy W/ Bil Total Pelvic Lymphadenectomy

​................ $76,300!! 

 

$ 38,700 for: Hospital Charges $ 37,600 for: Physician Charges 

 

​I don't think these fees should be a state secret.​

I think we will both die of heart attacks before we have to worry about QoL issues in PCa treatments!!  No offer to negotiate price, no offer to help understand these prices at all. I do know that this includes 1 night in hospital.

 

Now I have something to comparison shop with. I called Johns Hopkins and they could immediately quote for RALP (as above but with a 2 night stay in hospital)..  $30-32,000. We understand these estimates are always on the conservative side. Open radicals start at $20,000. ​

 

​We are still waiting for the biopsy slides to come back.

 

We did consult with a cutting-edge radiation oncologist who was recommended by Dr. G. on Tuesday after the MRI (the MRI reports now being sent to MSK and Dr. G). We'll call him Dr. B (for brachytherapy)​. By the time we got to his office, Dr. G's office had sent all our history and test results that we hand carried, plus the MRI scan and report from that morning! Now, I am impressed... 3 different offices communicating so seamlessly after trying to get blood out of stone at MSK.  

Another DRE (my poor husband...) again, unremarkable. He read the MRI report, which we had yet to see, and it showed no extension of disease and looked to be contained within the prostate. T1c.  

We then discussed what his opinion and treatment options would be. My husband would be a good candidate for brachytherapy and he has had great success with his technique. He is passionate about giving men options other than radical surgery. We learned a lot. He also stated that my husbands prostate is not enlarged and if he we wanted  RALP, not having an enlarged prostate makes the surgery easier. Again, he suggested other higher volume surgeons. Dr. B works out of Mt Sinai, but he set up an appointment with a surgeon who is head of Lenox Hill Urology and has a high success rate with da Vinci. We will meet him this Friday. I'd like to know his hospital charges. 

 

All in all, it sounds like we are in a good position health wise. My husband's cancer may be moderately high volume, but very treatable and we are being advised by everyone except MSK to look at all available treatments other than just radical surgery.

 

We are giving serious consideration to brachytherapy. 

 

​We are still waiting for the biopsy slides.....

 

 

Best to all,

 

SMZ

​

 

-- 

"Life is a series of interruptions interrupted by interruptions."

 

 

Dear All,

 

Wow, I can not thank you enough for the time you have taken to give us your combined wisdom!

 

Now I feel I must update you on our progress... (Mrs PJD, you are so right about the roller coaster ride!)...

 

Just before we left Hong Kong , we did another PSA test (July 17), which was 5.96, lower than the May 3rd score of 8.65. Hmmmm.... at least it is not climbing.

 

We arrived in NYC last Thursday night (JUN 25) and had our first appointment at MSKCC with 

a pre-

assigned 

Robotics 

surgeon

  at 7:30am

 Friday. 

Note, we did not request anything more than their analysis of our biopsy slides and a treatment plan. We assumed surgery would be offered but shouldn't we have been counseled as to our options based on test results? We did fly all the way from Hong Kong for their expertise.

 

W

e

 had

 sent

 the biopsy

 slides 10 days prior

 to our departure

 and the

 hospital

confirmed receipt. We expected to 

meet

 their 

doctors

 who would have t

he

 updated pathology report. 

 

The

 Robotics surgeon

 w

as

 

 very upbeat about positive outcome

 and scheduled surgery for Monday, Aug. 5

, ordered a Tesla 3 MRI. 

 

As I tried to ask questions as to 

my husband's

 path report we realized he was looking at the original report we emailed from Hong Kong. It turns out, his RN had postponed submitting the 

biopsy 

slides

 for testing

 as the original report did not show my husband's birth date! (In HONG KONG, they go by HK ID card numbers, not birth-dates) By this time they had been in possession of our slides for 2 weeks with no action. Do you think someone could have mentioned this to us and asked for a revised report??? They promised to send the slides for testing this week, which takes 7-10 days. "Not a problem". After a DRE, in which  there was a small area of firmness on the left side, his prostate felt normal.

 We went home, exhausted.

 This surgeon is on holiday this week and would be back for surgery on Monday without having another meeting with us to discuss the results of the MRI he ordered and the results of their expert pathology on the slides. 

 

We had Saturday and Sunday to think about all this. There was  also the issue of expense. We have been pushing to get a quotation since before we left. As of Monday, it had still not been given. We are self-pay, this has to be a consideration.

The MRI was scheduled for Tuesday morning, not at MSK as they are over-inundated and were outsourcing.

 

We have a friend 

here in NYC who organized an appointment with his urologist for comparison. Dr. G is

, 

from what I have read, very well respected

 

. We saw him on Monday, the MRI scheduled for Tuesday morning. After a DRE, he stated that the prostate is normal in size and the firmness does not indicate cancer but of course, having the biopsy

 ,

 we know there is cancer. He said we were lucky to have had the biopsy when we did, it is very slow growing, has been there for a long time, thus the Gleason 6, and that we should postpone the surgery until the MRI and updated pathology reports are in. 

 We agreed. (Who wants to have surgery with a surgeon who has not discussed the updated reports with the patient before he operates?) He cautioned that we have other options and mentioned brachytherapy (this from a urologist!). This has never been offered to us. He set up an appointment with a radiation oncologist who is at the top of his class in perfecting this treatment so that we can be better informed. Dr. G. also said that if we choose RALP, there are two surgeons he'd suggest who have more expertise than that of MSK's surgeons, and because they are with other hospitals, the overall price may be lower.

 

Now, price is a major consideration for people who are self-pay, especially in a level playing field. MSK up to this point, had not given us a cost estimate. We asked when we first contacted them that we need this information. When we called to postpone the surgery, everything changed. The International Center Coordinator called that afternoon and followed up with an email of their charges. I quote: 

 

"

Laparoscopic Surgical Prostatectomy, Retropubic Radical, Incl Nerve Sparing, Includes Robotic Assistance, Robotically (Si-Model) Assisted Procedure, Laparoscopy W/ Bil Total Pelvic Lymphadenectomy

 ................ $76,300!! 

 

$ 38,700 for: Hospital Charges $ 37,600 for: Physician Charges 

 

I don't think these fees should be a state secret.

I think we will both die of heart attacks before we have to worry about QoL issues in PCa treatments!!  No offer to negotiate price, no offer to help understand these prices at all. I do know that this includes 1 night in hospital.

 

Now I have something to comparison shop with. I called Johns Hopkins and they could immediately quote for RALP (as above but with a 2 night stay in hospital)..  $30-32,000. We understand these estimates are always on the conservative side. Open radicals start at $20,000.

 

We are still waiting for the biopsy slides to come back.

 

We did consult with a cutting-edge radiation oncologist who was recommended by Dr. G. on Tuesday after the MRI (the MRI reports now being sent to MSK and Dr. G). We'll call him Dr. B (for brachytherapy). By the time we got to his office, Dr. G's office had sent all our history and test results that we hand carried, plus the MRI scan and report from that morning! Now, I am impressed... 3 different offices communicating so seamlessly after trying to get blood out of stone at MSK.  

Another DRE (my poor husband...) again, unremarkable. He read the MRI report, which we had yet to see, and it showed no extension of disease and looked to be contained within the prostate. T1c.  

We then discussed what his opinion and treatment options would be. My husband would be a good candidate for brachytherapy and he has had great success with his technique. He is passionate about giving men options other than radical surgery. We learned a lot. He also stated that my husbands prostate is not enlarged and if he we wanted  RALP, not having an enlarged prostate makes the surgery easier. Again, he suggested other higher volume surgeons. Dr. B works out of Mt Sinai, but he set up an appointment with a surgeon who is head of Lenox Hill Urology and has a high success rate with da Vinci. We will meet him this Friday. I'd like to know his hospital charges. 

 

All in all, it sounds like we are in a good position health wise. My husband's cancer may be moderately high volume, but very treatable and we are being cautioned by everyone except MSK to look at treatment other than radical surgery.

 

We are giving serious consideration to brachytherapy. 

 

We are still waiting for the biopsy slides.....

 

 

Best to all,

 

SMZ

 

 

SMZ

SMZ said:

 

Dear All,

 

Wow, I can not thank you enough for the time you have taken to give us your combined wisdom!

 

Now I feel I must update you on our progress... (Mrs PJD, you are so right about the roller coaster ride!)...

 

Just before we left Hong Kong , we did another PSA test (July 17), which was 5.96, lower than the May 3rd score of 8.65. Hmmmm.... at least it is not climbing.

 

We arrived in NYC last Thursday night (JUN 25) and had our first appointment at MSKCC with 

a pre-

assigned 

Robotics 

surgeon

  at 7:30am

 Friday. 

Note, we did not request anything more than their analysis of our biopsy slides and a treatment plan. We assumed surgery would be offered but shouldn't we have been counseled as to our options based on test results? We did fly all the way from Hong Kong for their expertise.

 

W

e

 had

 sent

 the biopsy

 slides 10 days prior

 to our departure

 and the

 hospital

confirmed receipt. We expected to 

meet

 their 

doctors

 who would have t

he

 updated pathology report. 

 

The

 Robotics surgeon

 w

as

 

 very upbeat about positive outcome

 and scheduled surgery for Monday, Aug. 5

, ordered a Tesla 3 MRI. 

 

As I tried to ask questions as to 

my husband's

 path report we realized he was looking at the original report we emailed from Hong Kong. It turns out, his RN had postponed submitting the 

biopsy 

slides

 for testing

 as the original report did not show my husband's birth date! (In HONG KONG, they go by HK ID card numbers, not birth-dates) By this time they had been in possession of our slides for 2 weeks with no action. Do you think someone could have mentioned this to us and asked for a revised report??? They promised to send the slides for testing this week, which takes 7-10 days. "Not a problem". After a DRE, in which  there was a small area of firmness on the left side, his prostate felt normal.

 We went home, exhausted.

 This surgeon is on holiday this week and would be back for surgery on Monday without having another meeting with us to discuss the results of the MRI he ordered and the results of their expert pathology on the slides. 

 

We had Saturday and Sunday to think about all this. There was  also the issue of expense. We have been pushing to get a quotation since before we left. As of Monday, it had still not been given. We are self-pay, this has to be a consideration.

The MRI was scheduled for Tuesday morning, not at MSK as they are over-inundated and were outsourcing.

 

We have a friend 

here in NYC who organized an appointment with his urologist for comparison. Dr. G is

, 

from what I have read, very well respected

 

. We saw him on Monday, the MRI scheduled for Tuesday morning. After a DRE, he stated that the prostate is normal in size and the firmness does not indicate cancer but of course, having the biopsy

 ,

 we know there is cancer. He said we were lucky to have had the biopsy when we did, it is very slow growing, has been there for a long time, thus the Gleason 6, and that we should postpone the surgery until the MRI and updated pathology reports are in. 

 We agreed. (Who wants to have surgery with a surgeon who has not discussed the updated reports with the patient before he operates?) He cautioned that we have other options and mentioned brachytherapy (this from a urologist!). This has never been offered to us. He set up an appointment with a radiation oncologist who is at the top of his class in perfecting this treatment so that we can be better informed. Dr. G. also said that if we choose RALP, there are two surgeons he'd suggest who have more expertise than that of MSK's surgeons, and because they are with other hospitals, the overall price may be lower.

 

Now, price is a major consideration for people who are self-pay, especially in a level playing field. MSK up to this point, had not given us a cost estimate. We asked when we first contacted them that we need this information. When we called to postpone the surgery, everything changed. The International Center Coordinator called that afternoon and followed up with an email of their charges. I quote: 

 

"

Laparoscopic Surgical Prostatectomy, Retropubic Radical, Incl Nerve Sparing, Includes Robotic Assistance, Robotically (Si-Model) Assisted Procedure, Laparoscopy W/ Bil Total Pelvic Lymphadenectomy

 ................ $76,300!! 

 

$ 38,700 for: Hospital Charges $ 37,600 for: Physician Charges 

 

I don't think these fees should be a state secret.

I think we will both die of heart attacks before we have to worry about QoL issues in PCa treatments!!  No offer to negotiate price, no offer to help understand these prices at all. I do know that this includes 1 night in hospital.

 

Now I have something to comparison shop with. I called Johns Hopkins and they could immediately quote for RALP (as above but with a 2 night stay in hospital)..  $30-32,000. We understand these estimates are always on the conservative side. Open radicals start at $20,000.

 

We are still waiting for the biopsy slides to come back.

 

We did consult with a cutting-edge radiation oncologist who was recommended by Dr. G. on Tuesday after the MRI (the MRI reports now being sent to MSK and Dr. G). We'll call him Dr. B (for brachytherapy). By the time we got to his office, Dr. G's office had sent all our history and test results that we hand carried, plus the MRI scan and report from that morning! Now, I am impressed... 3 different offices communicating so seamlessly after trying to get blood out of stone at MSK.  

Another DRE (my poor husband...) again, unremarkable. He read the MRI report, which we had yet to see, and it showed no extension of disease and looked to be contained within the prostate. T1c.  

We then discussed what his opinion and treatment options would be. My husband would be a good candidate for brachytherapy and he has had great success with his technique. He is passionate about giving men options other than radical surgery. We learned a lot. He also stated that my husbands prostate is not enlarged and if he we wanted  RALP, not having an enlarged prostate makes the surgery easier. Again, he suggested other higher volume surgeons. Dr. B works out of Mt Sinai, but he set up an appointment with a surgeon who is head of Lenox Hill Urology and has a high success rate with da Vinci. We will meet him this Friday. I'd like to know his hospital charges. 

 

All in all, it sounds like we are in a good position health wise. My husband's cancer may be moderately high volume, but very treatable and we are being cautioned by everyone except MSK to look at treatment other than radical surgery.

 

We are giving serious consideration to brachytherapy. 

 

We are still waiting for the biopsy slides.....

 

 

Best to all,

 

SMZ

 

 

Formatting problem

I give up.