Recently diagnosed with Gleason score of 9

VascodaGama

Guessing

The average timings in testosterone flare lasts for about one week till the pituitary stops sending fabrication requests to the testis. The accumulated testosterone in the body will then start to vanish getting into chemical castration level of <50 ng/dL, at 28 days on average. The PSA would decrease also accompanying the decrease of the testosterone. This seems to fit your scheduled scan. In any case, I believe that the present PSA of 2.0 would not lower to such a level rendering the scan unpractical.

Sincerely Amigo SV, you have started this chapter of your PCa affair with a doctor that seems to like doing things based on his experience or just by guessing. I cannot judge his oncologic skills but I can say that he could have tried lowering the number of items taken by guessing, if he has demanded those blood tests before the shot. You would today be certain about the levels of testosterone circulating in your body. The same goes for the colonoscopy to try verifying if you got ulcerative colitis. If existent, the radiation could affect your future quality of life very much. In your shoes I would be more inquisitive and demanding. Get a colonoscopy before RT and a full blood and lipid panel tests.

VG

SV

While I was at City of Hope

While I was at City of Hope their lab took blood and gave the following resuts

Testosterone, Total Serum

688.3 ng/dL

241.0 to 827.0 ng/dL241.0 - 827.0 ng/dL

Prostate Specific Antigen (Total), Blood

1.916 ng/mL

<=3.1 ng/mL<=3.1 ng/mL

Protein Total, Blood	7.1 g/dL	6.3 to 8.2 g/dL6.3 - 8.2 g/dL
Albumin Level, Blood	4.2 g/dL	3.5 to 5.0 g/dL3.5 - 5.0 g/dL
Calcium Level, Blood	9.6 mg/dL	8.6 to 10.2 mg/dL8.6 - 10.2 mg/dL
Bilirubin Total, Blood	0.7 mg/dL	0.2 to 1.3 mg/dL0.2 - 1.3 mg/dL
Alkaline Phosphatase Level, Blood	69 IU/L	38 - 126 IU/L38 - 126 IU/L
SGPT (ALT)	21 IU/L	7 to 56 IU/L7 - 56 IU/L
SGOT (AST)	21 U/L	15 to 46 U/L15 - 46 U/L
Sodium Level, Blood	138 mmol/L	137 to 145 mmol/L137 - 145 mmol/L
Potassium Level, Blood	4.3 mmol/L	3.5 to 5.1 mmol/L>3.5-<5.1 mmol/L
Chloride Level, Blood	99 mmol/L	98 to 107 mmol/L98 - 107 mmol/L
Carbon Dioxide Level, Blood	28 mmol/L	22 to 30 mmol/L22 - 30 mmol/L
Glucose Level (Random), Blood	94 mg/dL	80 to 128 mg/dL80 - 128 mg/dL
Blood Urea Nitrogen Level, Blood	25 mg/dL	7 to 25 mg/dL7 - 25 mg/dL
Creatinine Level, Blood	1.21 mg/dL	0.7 - 1.3 mg/dL0.7 - 1.3 mg/dL
eGFR Except African American	>=60 mL/min/1.73 sq M	>=60 mL/min/1.73 sq M>=60 mL/min/1.73 sq M

WBC	8.6 K/uL	3.6 to 10.1 K/uL3.6 - 10.1 K/uL
RBC Count	4.73 M/UL	4.01 to 5.29 M/UL4.01 - 5.29 M/UL
Hemoglobin, Whole Blood	15.5 g/dL	12.8 to 16.1 g/dL12.8 - 16.1 g/dL
Hematocrit, Whole Blood	46.5 %	37.6 to 47.2 %37.6 - 47.2 %
Platelet Count	197 K/uL	150 to 350 K/uL150 - 350 K/uL
MCV	98.4 fL	83.3 to 97.0 fL83.3 - 97.0 fL
MCH	32.7 pg	27.4 to 33.0 pg27.4 - 33.0 pg
MCHC	33.2 g/dL	32.8 to 35.0 g/dL32.8 - 35.0 g/dL
RDW	13.9 %	12.5 to 15.0 %12.5 - 15.0 %
MPV	7.7 fL	7.1 to 11.2 fL7.1 - 11.2 fL

Segmented Neutrophil	70.2 %	42.5 to 78.2 %42.5 - 78.2 %
Lymphocyte	17.6 %	11.9 to 46.0 %11.9 - 46.0 %
Monocyte	8.4 %	5.0 to 15.3 %5.0 - 15.3 %
Eosinophil	3.3 %	0.7 to 7.2 %0.7 - 7.2 %
Basophil	0.5 %	0.2 to 1.6 %0.2 - 1.6 %
Segmented Neutrophil Absolute	6.0 K/uL	1.9 to 6.0 K/uL1.9 - 6.0 K/uL
Lymphocyte Absolute	1.5 K/uL	0.5 to 3.3 K/uL0.5 - 3.3 K/uL
Monocyte Absolute	0.7 K/uL	0.3 to 0.9 K/uL0.3 - 0.9 K/uL
Eosinophil Absolute	0.3 K/uL	<=0.6 K/uL<=0.6 K/uL
Basophil Absolute	0.0 K/uL	<=0.1 K/uL<=0.1 K/uL
Remisol Manual Diff Reflex

The doctor at City of Hope is not my primary doctor who made the original error when switichig testing types. When I checked my results online two weeks ago I noticed the PSA rise and I went to COH immediately. I think what alarmed the doctors at COH was the rise from .1 to 2.0 in less than 18 months. Is that an unusual rise in that time frame? They have scheduled me for an oncology consultation a few days after the PET scan

SV

VascodaGama said:

Excellent blood test results

I am very glad for knowing that the hospital took the initiative in doing the blood work, probably before the Lupron shot. These results will serve you as basic data when judging the progress of treatment, verifying its effects on your other health factors. By experience, the hormonal treatment leads to cardiovascular issues (HBP) which then causes deterioration of kidney's filtration function. I calculated your eGFR as 70 mL/min/1.73 therefore bigger than >60.0, which is very good if maintained. The items in the blood count are the values to check 6 months after the radiation treatment. These can tell you if the immune system has been affected.

The rise of the PSA from 0.1 to 2.0 in 18 months could be expected in RP recurrence cases of Gs9 patients as it represents a doubling of 3 months (PSAdt=3 month). However, such surge is not usual in cases of recurrence after 9 years of remission (your situation). In any case, one should not dismiss the possibility in other causes that could have influenced remission along the 9 years; For instance, taking supplements that incorporate hormonal substances or even a life style free from stress. Surely the assays used in the PSA tests and the laboratories could commit errors too but not all tests along the 9 years.

I hope you like the team of doctors you will meet in your next consultation. It should include a radiotherapist willing to answer your doubts. Tell them that you want a colonoscopy before the SRT and ask for the details (preparedness) before, during and after the treatment.

Best wishes,

VG 

Well...after five years with

Well...after five years with .1 I assumed that I was cancer-free forever and went on Testosterone (TRT). I was a competitive athlete training hard the entire time and never felt better in my entire life until seeing the recent PSA rise. Doctor at COH commented that had I not done that I would not be in this position now. Anyways it is what it is. After the PET scan I will find the best prostate cancer hospital in the US and travel to them for a second opinion. I've heard that Sloan-Kettering is the best. Anyone else have recommendations?

VascodaGama

You shouldn't blame yourself

SV,

I do not agree with the COH doctor's comment regarding TRT but I am not a doctor to go against his principles. As far as I know from my researches on the subject, there is no proving that TRT affects or causes cancer directly. In fact the body reacts differently depending on the origins of the testosterone. Exogenous testosterone (injected) seems to have little influence in cancer behavior but it reflects in stimulating energy (muscle tissues). The  endogenous testosterone (produced by the testis) is behind cancer activity but not initiation, and from your resent blood test we know that you got alot of the stuff (T=688.3 ng/dL) circulating in the body. In other words, I believe that the prostatectomy of 2010 did not free you from the whole cancer, leaving behind some cancerous cells that were dormant along the years or under control by the immune system. These may have been awakened by a stressful moment in your life (weakened immune system), and later becoming more active when it started enjoying those testosterone cocktails plenty available in you.

I think that you doing well in getting a consultation at a top hospital. You can latter get treated at a close hospital to your home. However, I recommend you to get those test and exams done firstly so that you can bring along the results to the consultation, together with the resume of your PCa history (copy of RP pathological report from COH). It will help in receiving the best opinion from the attending doctor. Apart from SKCC, JH, Mayo, MD Anderson, etc are also named in this forum as being good.

Best wishes,

VGama

   

VascodaGama

Excellent blood test results

I am very glad for knowing that the hospital took the initiative in doing the blood work, probably before the Lupron shot. These results will serve you as basic data when judging the progress of treatment, verifying its effects on your other health factors. By experience, the hormonal treatment leads to cardiovascular issues (HBP) which then causes deterioration of kidney's filtration function. I calculated your eGFR as 70 mL/min/1.73 therefore bigger than >60.0, which is very good if maintained. The items in the blood count are the values to check 6 months after the radiation treatment. These can tell you if the immune system has been affected.

The rise of the PSA from 0.1 to 2.0 in 18 months could be expected in RP recurrence cases of Gs9 patients as it represents a doubling of 3 months (PSAdt=3 month). However, such surge is not usual in cases of recurrence after 9 years of remission (your situation). In any case, one should not dismiss the possibility in other causes that could have influenced remission along the 9 years; For instance, taking supplements that incorporate hormonal substances or even a life style free from stress. Surely the assays used in the PSA tests and the laboratories could commit errors too but not all tests along the 9 years.

I hope you like the team of doctors you will meet in your next consultation. It should include a radiotherapist willing to answer your doubts. Tell them that you want a colonoscopy before the SRT and ask for the details (preparedness) before, during and after the treatment.

Best wishes,

VG 

Clevelandguy

Test results

Hi Sv,

I know that my regular Internal Medicine doctor goes over with me the different values on my blood test. He knows which ones effects which organ to give an indicator of what's going on.  Might want to take your blood work results to an Internal Medicine doc so he can read and discuss with you.  The blood test results might point to a certain area or organ that you might want to look into further along with your PET scan.  Just a thought...............

Dave 3+4

SV

PET results

I had the PET scan last Tuesday and met with radiation oncologist Friday for the results. The good news is that they found the lesion in the seminal vesicles and nowhere else so it's treatable with radiation. The doctor wants to do the typical five days a week for two months program with more energy focussed on the seminal vesicles. However he also wants me to continue on Lupron for perhaps two more years to be sure any remaining cells are dealt with. I explained that further Lupron treatment was not an option for me and that I am headed to Sloan Kettering and MD Anderson for a second and third opinion. Since time is of the essence and it takes three weeks to even get started, we agreed that I should initiate the radiation process now.

The doctor was understanding of my desire for second opinions but also said that he was certain that both of those hospitals would recommend the same treatment. Radiation I can deal with but no more Lupron for me. What do you guys think?

VascodaGama

Missing the point

SV,

I wonder on the purposes of the second opinion at the Sloan Kettering and MD Anderson if you have already agreed and have started the treatment. Are you still undecided? What are the purposes of those consultations?
I think you should have kept your original plan and start the treatment after the consultations. After all, delaying the radiotherapy one or two month would not alter the outcomes.

The results of the PET made me curious for the detection of malignancy at the tips of the seminal vesicles that were not dissected by the surgeon. This was an unfortunate erroneous decision during the surgery of 2010. Before DaVinci, prostatectomies would dissect the whole prostate gland together with the seminal vesicles and localized lymph nodes. But robot surgeries done during the first decade of 2000, followed a different principle, leaving the tips of the seminal vesicles untouched to help in faster recovery from ED issues and incontinence. Those VS tips are connected to the nerve bundle (prostatic plexus) and usually are dissected when the case involves high Gleason grade 9 (4+5) added to numerous positive cores found in the biopsy. This was your case in 2009.

I hope you manage this time to blow out the bandit for good.

Best wishes and luck in this journey.

VG

SV

VascodaGama said:

Missing the point

SV,

I wonder on the purposes of the second opinion at the Sloan Kettering and MD Anderson if you have already agreed and have started the treatment. Are you still undecided? What are the purposes of those consultations?
I think you should have kept your original plan and start the treatment after the consultations. After all, delaying the radiotherapy one or two month would not alter the outcomes.

The results of the PET made me curious for the detection of malignancy at the tips of the seminal vesicles that were not dissected by the surgeon. This was an unfortunate erroneous decision during the surgery of 2010. Before DaVinci, prostatectomies would dissect the whole prostate gland together with the seminal vesicles and localized lymph nodes. But robot surgeries done during the first decade of 2000, followed a different principle, leaving the tips of the seminal vesicles untouched to help in faster recovery from ED issues and incontinence. Those VS tips are connected to the nerve bundle (prostatic plexus) and usually are dissected when the case involves high Gleason grade 9 (4+5) added to numerous positive cores found in the biopsy. This was your case in 2009.

I hope you manage this time to blow out the bandit for good.

Best wishes and luck in this journey.

VG

I'm assumomg that radiation

I'm assumomg that radiation will be the standard recommendation however I do not want to continue on Lupron. I was hoping that the other doctors would have a different solution. I still don't understand why Lupron is necessary after radiation.

VascodaGama

SRT without ADT

 

V

Some clinics follow their own protocol. RT+Lupron combination is usually administered in two years in guys with Gs9. However I think it too long. Six to twelve months may be enough. In any case, you can do the radiation without Lupron. SRT is the one that can kill the bandit. Lupron helps to improve the blow given by the radiation. You can negate the hormonal treatment but you need to discuss the matter with the RO before the treatment.

Apart from that, there are other methods of radiation from what to choose. Have you started the markings/tattoo and CT scan?

Advance with the treatment only after being comfortable. What is the rush?

VG

SV

VascodaGama said:

SRT without ADT

 

V

Some clinics follow their own protocol. RT+Lupron combination is usually administered in two years in guys with Gs9. However I think it too long. Six to twelve months may be enough. In any case, you can do the radiation without Lupron. SRT is the one that can kill the bandit. Lupron helps to improve the blow given by the radiation. You can negate the hormonal treatment but you need to discuss the matter with the RO before the treatment.

Apart from that, there are other methods of radiation from what to choose. Have you started the markings/tattoo and CT scan?

Advance with the treatment only after being comfortable. What is the rush?

VG

I don't even have an

I don't even have an appointment with radiologist yet but was told by the end of the week they wouild schedule making a mold that would happen soon after. Actual radiation would begin around end of February. No menton of colonoscopy yet.

What other types of radiation are possible?

VascodaGama

COH RT department

Can you tell us who is leading/assisting you at COH?

Is it a clerk or a doctor? Are you seeing a specialist ?

COH performs various types of radiotherapy. You can call them to inquire. Read this;

https://www.cityofhope.org/patients/departments-and-services/radiation-oncology/radiation-oncology-technologies

SV

Not sure what this means

Study Result

HISTORY: 67-year-old with m chemotherapy recurrent prostate carcinoma   FULL RESULT: Prior exam: None. TECHNIQUE: Following intravenous injection of 10.8 mCi of F-18 fluciclovine and a 3 minute uptake period, multi-bed station 3-D PET and low resolution axial CT image acquisition was performed in a dedicated PET/CT scanner to include the skull vertex to the proximal thighs. Multiplanar PET and CT reconstructions were performed. The CT images were utilized for attenuation correction and localization purposes. CT images were fused with the corresponding PET images.   FINDINGS: NORMAL PHYSIOLOGIC FINDINGS: There is normal physiologic activity in the liver, pancreas, salivary glands, and patchy physiologic uptake within the skeletal muscles.   ONCOLOGIC AND POTENTIALLY ONCOLOGIC FINDINGS: There has been previous prostatectomy. There is minimal to mild F-18 fluciclovine uptake within the region of the former right seminal vesicles with a maximum SUV of 4.2 and a 25 x 10 mm soft tissue focus in the region (image #232). No other abnormal F-18 fluciclovine avid lesions are identified. No pulmonary nodules, infiltrates, or pleural effusion is identified. There is a subthreshold rim sclerotic lucent lesion in the left iliac crest measuring 17 x 11 mm (image #203). No other abnormal bone lesions are seen on the PET or CT portions of the exam. There is question of subtle lucent lesions in the liver. NONONCOLOGIC FINDINGS: There are several bilateral renal calculi, some of which resides in the both renal pelves. The largest measures 20 x 9 mm in the left renal pelvis (image #156). There is extensive sigmoid diverticulosis. Non-F-18 fluciclovine avid calcifications are noted in the anterior mediastinum which are presumably benign but are of unclear etiology. Reference values: L3 vertebral body activity: 2.9 Mediastinal blood pool activity: 2.0   IMPRESSION: 1. Minimal to mild F-18 fluciclovine avid soft tissue lesion in the region of the right seminal vesicles suggesting local recurrence of the patient's known prostate carcinoma. 2. Subthreshold rim sclerotic lucent lesion in the left iliac crest which is presumably benign. 3. Question of subtle lucent lesions in the liver. Suggest diagnostic pre and postcontrast CT scans of the abdomen and pelvis. 4. Several bilateral renal calculi with the largest measuring 20 x 9 mm (central portion of left kidney).

SV

Best type of radation

I have never had chemo but the report indicates that I have. Did I misread this? I wonder if their method of treatment would be different if I had never had chemo.

Dr Scott Glasser was the radiation oncologist who I spoke with along with another doctor under him.

Dr. Cy Stein was the first prostate cancer specialist who I intitially saw. He ordered the Lupron shot three weeks ago.

VascodaGama

ADT (Lupron) is not chemotherapy

Amigo SV,

Sincerely I am puzzled with your late inquires on matters that you have already discussed, accepted and are following at COH. I think you know the answers to your questions but insist in discussing them again. Are you trying to verify if we agree with your choice? Nobody here would go against your decisions. We all believe that you did well. In any case, it would be nice and helpful to the newbies reading your story if you describe the details of the therapy's protocol and the reason for its choice.

I hope you get cured and manage to maintain an acceptable quality of life.

Best,

VG

SV

VascodaGama said:

ADT (Lupron) is not chemotherapy

Amigo SV,

Sincerely I am puzzled with your late inquires on matters that you have already discussed, accepted and are following at COH. I think you know the answers to your questions but insist in discussing them again. Are you trying to verify if we agree with your choice? Nobody here would go against your decisions. We all believe that you did well. In any case, it would be nice and helpful to the newbies reading your story if you describe the details of the therapy's protocol and the reason for its choice.

I hope you get cured and manage to maintain an acceptable quality of life.

Best,

VG

I apologize for the confusion

I apologize for the confusion and lack of clarity on my part. When meeting with the COH radiologist he only showed me the image of where the new cancer is located and then abruptly said that I need radiation for two months followed by up to two years of Lupron which I thought was excessive. (I think you thought so too.) I really don't want to ever take a Lupron shot again. And when I said that I'd also seek a second opinion he was okay with that but suggested that in the meantime I sign up for the radiation treatment as he recommended because it would take at least a month before anything got started. And while waiting for that I had time for that second opinion. He said that I had at least a month to change my mind about getting radiation at COH.

My concern regarding that PET scan report and other information the COH radiologist reviewed is that it may be incorrect and possibly the reason for the additional time on Lupron. At the top of the PET scan report it mentions chemo as though I've already had that--but I've never had chemo. Also my initial biopsy was a Gleason 9 but post surgical biopsy changed to Gs7 4+3. Because over the years I've often seen mistakes in medical reports I want to have fresh eyes on my case to see if the situation warrants further Lupron.

This morning I made an appointment at MD Anderson for March 20 and also requested to be placed on a wait-list for an earlier appointment with any other of their Genitourinary medical oncology doctors. My guess is that I can get an appointment in the next few weeks. Either way I'll delay/postpone starting radiation a COH until a second opinion is provided by doctors at MD Anderson.

VascodaGama

Confusion

SV,

You do not need to apologize. The situation is stressful and the influence of the Lupron may be powering you off. Apart from that the guys at COH have not been nice for not providing you the details. I think you should inquire them on your doubts and continue the matter when you feel comfortable with the answers. I am surprised for the coercive way the radiotherapist used to influence an agreement.

Please note that we in this forum are not doctors. We are survivors like you and try helping each other with comments based on own experience. You need to find a doctor that you trust and give you confidence. I hope you manage to get that feeling in your next consultation at MD Anderson. Again, I recommend you to take along the copies of all exams and tests, including those from the surgery occasion.
A list of question will also be helpful when meeting the specialists. Lay down all the items you do not understand or want to know, even if these seem awkward inquiring.

Regarding your above posts, I think that the description on “chemotherapy” in the PET report is a clerk error if you had not such a treatment. They may have wanted to type that you were under the effects of the Lupron, which is due as it may influence the results of the PET scan as seen by the radiologist. However, it was Dr. Cy that wrote your “Patient Record” in your hospital’s file and it could have a meaning. You can inquire calling them.

In any case, the comment in the PET report may not interfere with the proposed salvage treatment combining SRT+ADT. I would expect that both doctors (Cy, medical oncologist, and Scott, radiotherapist) are following the hospital’ directive in their practice. I have seen similar guys posting similar protocols used at other institutions. Typically, these hospitals follow the general NCCN guidelines where it is recommended full radiation protocol with ADT (Lupron alone or added to Bicalutamide), which can last two to three years in patients considered as high risk. NCCN considers recurrence cases in Gleason rates of 4 and 5 (scores of 7, 8 and 9) as high and very high risk.

Here is a link of the Guidelines;
https://www.nccn.org/about/news/ebulletin/ebulletindetail.aspx?ebulletinid=666

However, in some other institutions they follow the same principle in combination therapy but drastically reduce the time of ADT to six months, to fit the particulars of the patient. I see it as friendlier and appropriate because I believe that recurrences from RT or RP do not become systemic cases unless if far metastases have been detected.
This is what you have indicated here. The PET has been negative to metastases in bone, identifying only neoplasia at the tips of the seminal vesicles (prostatic fossa). Radiating this area may free you from the bandit for good.

In my lay opinion you may substitute Lupron with Firmagon as this drug achieves the same principles of Lupron but is friendlier in terms of the side effects. You could also have the treatment using radiotherapy alone. You should discuss your wishes with the radiologist. You can inquire about the purposes of each therapy and about the expected results from each approach. Surely the process is different and will affect you more if the combi is chosen. I hope that guys here explain about their experience with SRT plus ADT.
In regards to the radiotherapy, I do not understand what has been proposed to you. Treatments involving five days a week for two months are the typical IMRT or Proton Beam but casting described in your above post is usually done in Proton treatments when the whole prostate gland is in place. I never heard about such practice in salvage therapies for RP guys.

I wonder the dose of your Lupron shot. It may be playing tricks on you already. You may be experiencing menaupose like symptoms. Fatigue, hot flashes, mood changes and impaired recognition are all a bad experience. These will vanish about two months after the end of the effectiveness of the shot.

Hung in there, friend.

Best wishes.

VGama

 

Josephg

Confusion Continued

I agree with Vasco, in that you need to feel confident and comfortable with your medical professionals, and to be able to talk freely with them, and receive understandable and complete answers to your questions.  If this cannot be achieved with your current medical professionals, then I recommend (as a non-medical layperson) that you search for and engage new ones.  There is enough stress and uncertainty related to the PCa treatments themselves, that you do not need any additional relationship-related stress with you medical professionals.

Also, when I received my salvage radiation treatments, there was no casting/mold involved, and I was on a combination Lupron and Casodex hormone therapy for only 6 months, starting one month before the radiation treatments.

I with you success on your PCa journey.

eonore

Lupron

SV,

My recurrence was treated at Dana Farber.  I received six months of hormone therapy (Lupron and Casodex), along with eight weeks of radiation. So far so good.  The hormone therapy potentiates the radiation by weakening the cancer making it more susceptible to the effects of the radiation. I agree the Lupron sucks, it knocked the shirt out of me.  However, I think it would be foolish not to follow your Doctor's recommendation. You want to hit this thing as hard as you can with every weapon at your disposal.  Don't let your feelings about the Lupron drive your decision making at this juncture.  Your primary concern has to be a cure.

Also, I did have a mold made for my radiation, if you could call it that.  It was basically kind of a memory foam thing along with some blocks and a rolled up towel under the small of my back to get me angled just right.

SV

Thanks guys. I'm definitely

Thanks guys. I'm definitely experiencing side effects of disorientation to the point of often not knowing what day it is and a few stomach and headaches. Because I'm also recovering from two surgeries from six weeks ago I'm limited to only walking a few miles a day. I'll return to the gym next week. Currently at the four week mark since Lupron shot but still able to have sexual intercourse without orgasm--all with the help of Vitamin V.

Looking forward to second opinion at MD Anderson. Currently on a wait list to bump my appointment up from 3/20/2020