Recently diagnosed with prostate cancer, gleason 10
Hello All,
I came across this forum by searching the internet, and reading the posts here gives me some hope and courage.
My dear father was recently diagnosed with prostate cancer. Case history as follows:
1. He was having trouble with urine flow, and saw an urologist who gave prostate ultrasound and PSA to test. USG denoted Prostate Hyperplasia, and PSA was 12.7. Urologist gave "Silodal 8" drug to ensure urine flow is not stopped, and repeated PSA after 10 days along with uroflowmetry. PSA was 11.3. Advised immediate HOLEP surgery.
2. On the day before operation, urine flow completely stopped and had to be admitted to hospital immediately and subsequent cathetariztion for relief. Doctor could not perform HOLEP as prostate was inflamed, TURP was performed instead.
3. Post operation, after 15 days, urine flow increased, and not much post-operative complications. However, the biopsy of the TURP chips showed malignancy.
Biopsy Report as follows
----------------------------------------------------
- Infiltrating Prostatic Acinar Adenocarcinoma
- Gleason score 5+5=10, with solid areas, comedo necrosis, and single cell infiltration
- Grade Group 5
- 20% of whole tissue is involved
- Perineural invasion is present
I searched the net thoroughly over last week or so, and came to know that Gleason score 10 is highly aggressive form of prostate cancer. Feeling very scared and helpless now. Doctor has advised PSMA PET Scan immediately to check for metastates. Waiting for PET scan appointment. Meanwhile, immediately after the scan test, doctor has advised to start "Calutide 50mg" which is a testesterone-suppressing medicing I believe.
Would like to know from the experienced members here, what is the usual treatment path in this case? And what are the risks? I am also planning for 2nd and 3rd uro-oncologist appointments after I get the PET scan results.
Just to add PSA was repeated yesterday after the TURP recovery and it came 12.7, i.e. not decreased at all. I suppose it's because of the malignancy present.
Many thanks in advance.
Comments
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Get a clinical stage
Welcome to the board. As you expect Gleason score 10 is not a good diagnosis, however, independently of the Gleason grade, your dad got several means for treatment that will be decided once he receives a clinical stage. The first step is exactly to locate the bandit to which the PET PSMA scan is the best for the job.
You did not share details on your dad's other health issues (if any) and age but these will be also considered when evaluating his status and drawing opinions. For instance; Surgery is typically not recommended for 75 plus years old patients. Radiation may be prohibitive if the patient have/had ulcerative colitis and these are located at the critical field for RT treatment. Radiation of the area involved in the TURP intervention may not be the preferable choice as it can affect the urine sphincter, highly risky for causing incontinence. If the cancer is found widely spread with metastases in bone then radicals may not be recommended and the patient is moved to palliative approaches. In this case the quality of life becomes the prime target.
I recommend you to read about the type of treatments, their risks and side effects and discuss with other members of the family. I also would insist with your dad to get extra exams and tests to check any other health issue. The testosterone is never commented by urologists but this is an important marker in hormonal therapies. The whole lipids panel should be done at this time, together with a DEXA scan (bone health) and heart health tests. You can count with the survivours of this forum to help you understanding things. We are not doctors but can tell about our experiences. Get copies of all data and paste it here.
Here are some links for you to read. Better to prepare a List of Questions in advance of meeting the doctors.
A practical guide to prostate cancer diagnosis and management;
http://www.ccjm.org/index.php?id=105745&tx_ttnews[tt_news]=365457&cHash=b0ba623513502d3944c80bc1935e0958
Prostate Cancer Staging;
http://emedicine.medscape.com/article/2007051-overview
List of questions;
http://www.cancer.net/patient/All+About+Cancer/Newly+Diagnosed/Questions+to+Ask+the+Doctor
In this link you can read the discussions with a member dealing with Gleason rate 5;
https://csn.cancer.org/node/306682
Best wishes and luck in his journey.
VGama
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Sorry
I am sorry that you have to be here to get help for your father. Cancer is a very scary word. However, if you have o have cancer, prostate is a good choice. This is because each case is individual and cannot neccessarily be judged by referring to a similar case. Some with high Gleason score go on for years. And, even in dire cases. often treatment can give the patient much added time as well. I always use myself as an example. I have very agressive Stage 4 prostate and bone cancer and I have survived for almost six years now, and plan on a lot more. My prognosis was very bad and the cancer very widespread. There really is no telling about Prostate Cancer. My advice would be to accept what is, celebrate the time you have left with your father, whether short or long, be grateful for the lifetime that you have already shared with him, and just live in a state of "not knowing and not worrying", and make every day count. I wish you the very best. And, you are on notice now. Rejoice in each moment that you can share with your father.
Best wishes for a good outcome. Love, Swami Rakendra
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How old is your father?
Quality of life are just words for doctors. Any treatment offered to your father will cause signifant, permanent reductions in his ability to enjoy life.
The decision looks a lot different if he is 87 versus 53. Prostate cancer is generally slow, although a Gleason 10 may not be slow. But a man of advanced age would be wise to be very cautious about letting doctors ruin whatever time he has left.
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Age is 67 now
Thanks all for taking time to read my post and share your valuable opinions.
My father's age is 67 yrs now. Since PSMA PET scan appointment is taking longer, doctor has asked us to go for the following scans asap:
- MRI of the prostate pelvic nodes and retroperitoneal nodes
- Whole body Bone Scan
Medical history of other illness:
-------------------------------------------------
- Has Type II diabetes mellitus for almost 10 yrs now, under regular medications and blood sugar levels under control for last 6-7 yrs
- Under regular check-up of cardiologist for cholesterol, hypertension, diabetes, and taking medicatons and all under control.
- Got blood sugar, lipid profile, urea, creatinine, triglycerides etc all tested before the operation, and all are in normal levels
@VascodaGama - Not clear what is meant by palliative approaches? Can you explain?
Many Thanks in advance.
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you are rightRakendra said:Sorry
I am sorry that you have to be here to get help for your father. Cancer is a very scary word. However, if you have o have cancer, prostate is a good choice. This is because each case is individual and cannot neccessarily be judged by referring to a similar case. Some with high Gleason score go on for years. And, even in dire cases. often treatment can give the patient much added time as well. I always use myself as an example. I have very agressive Stage 4 prostate and bone cancer and I have survived for almost six years now, and plan on a lot more. My prognosis was very bad and the cancer very widespread. There really is no telling about Prostate Cancer. My advice would be to accept what is, celebrate the time you have left with your father, whether short or long, be grateful for the lifetime that you have already shared with him, and just live in a state of "not knowing and not worrying", and make every day count. I wish you the very best. And, you are on notice now. Rejoice in each moment that you can share with your father.
Best wishes for a good outcome. Love, Swami Rakendra
You are so right and thanks for reminding this!
Amidst all the research and nervousness, often we ignore the present... that should not be the case. Still, it is very hard to accept and I am trying to put my bravest face forward...
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Medical Oncologist
Strongly suggest that your father see a Medical Oncologist, the very very best that you can find to lead your Medical team. The Medical Oncologist is best qualified, much more so than a urologist, to select the drugs that will be most effective for your father. Additionally the Medical Oncologist will not be biased toward wanting to do surgery as a urologist (surgeon) is.
His cancer has escaped the prostate so localized treatment, such as surgery will not cure. There are side effects from each treatment type that are cumulative.
As well as speaking with a Medical Oncologist, it may be advisable to speak with a radiation oncologist. Depending on pet scan and bone scan results( how extensive the cancer as spread) hormone treatment only, or a combination of radiation and hormone treatment may be considered. (When radiation is administered the radiation can be directed to the prostate as well as surounding areas).
Ask that the MRI that will be done to be a T3 MRI, (this MRI machine uses a tesla 3.0 magnet, that provides the highest definition in clinical use)
.....................
There is a higher percentage of family members who can be diagnosed with prostate and breast cancers, so if you are a woman, get that regular mamogram ; and if you are a man, have a PSA and a digital rectal exam on a regular basis. The rate of change is important to the PSA indicator. Eat heart healthy. Let others in the family know of this brothers, sisters, sons, daughters, even cousins...it's the right thing to do.
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Insist in having the PET PSMA result before any advance
My meaning of a palliative approach is when the choice of a treatment is done to alleviate the burden of the malady instead of aiming cure. Typically in PCa cases palliative are recommended to those with many tumours spread at many places in the body, so extensive that cure becomes futile. In such a case one may choose to remove only a portion of the cancer with a surgical procedure (debulking a tumour) or a spot radiation (tumours in bone) or just a treatment to control the advancement of the disease (such as chemotherapy or hormonal treatment), etc. These therapies all got associated risks that would prejudice the quality of living of the patient without assuring cure, as commented by SPT above.
At this moment, your dad should give preferences to the most precise diagnosis possible as such will influence greatly in the choice of therapy and consequent risks. His doctor decided to skip the PET scan but in your shoes I would not follow his request. The traditional MRI and bone scan now advanced by the doctor are much associated to false negatives which are not what your dad wants. I would force and wait for the PET PSMA exam to draw conclusions on his diagnosis, in particular in the presence of an aggressive type Gleason rate 5. Surely there is no harm for having additional exams (MRI, CT, Bone scan, etc) but the PET is the one that will tell where the cancerous cells exist.
With regards to the other health issues, I would get a medical oncologist to lead your dad's case, as commented by Hopeful above, because of the medication for the type 2 diabetes mellitus (DM2). I wonder if the kidneys are at 100%. DM2 is a major risk factor for kidney disease and that would prohibit the use of particular contrast agents in image studies. You need to discuss the above with the physicians treating your dad and when at consultations for second opinions.
Can you describe the medications of your dad? Metformin is used in the treatment for diabetes but it also has shown benefits in the treatment of PCa. (just like killing two birds with one stone)Regarding DM2 and PCa;
http://ascopubs.org/doi/abs/10.1200/JCO.2016.67.4044?journalCode=jco
Regarding DM2 and the kidneys;
https://www.kidney.org/atoz/content/diabetes
Regarding DM2 medication;
https://www.ncbi.nlm.nih.gov/pubmed/27079349
You doing it well in researching and educating on the matters of PCa. Your dad is surely greatful for your help. Prostate cancer does not change overnight even in Gs 10 guys. Do things but use wisdom, move forward coordinately and timely.
Best wishes,
VGama
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.
To avoid any confusion....I was thinking that your Father's doc recommended an MRI in addition to a PET Scan, not instead......by all means, as Vasco commented, insist on having a PET scan.
Best
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diabetes medicationVascodaGama said:Insist in having the PET PSMA result before any advance
My meaning of a palliative approach is when the choice of a treatment is done to alleviate the burden of the malady instead of aiming cure. Typically in PCa cases palliative are recommended to those with many tumours spread at many places in the body, so extensive that cure becomes futile. In such a case one may choose to remove only a portion of the cancer with a surgical procedure (debulking a tumour) or a spot radiation (tumours in bone) or just a treatment to control the advancement of the disease (such as chemotherapy or hormonal treatment), etc. These therapies all got associated risks that would prejudice the quality of living of the patient without assuring cure, as commented by SPT above.
At this moment, your dad should give preferences to the most precise diagnosis possible as such will influence greatly in the choice of therapy and consequent risks. His doctor decided to skip the PET scan but in your shoes I would not follow his request. The traditional MRI and bone scan now advanced by the doctor are much associated to false negatives which are not what your dad wants. I would force and wait for the PET PSMA exam to draw conclusions on his diagnosis, in particular in the presence of an aggressive type Gleason rate 5. Surely there is no harm for having additional exams (MRI, CT, Bone scan, etc) but the PET is the one that will tell where the cancerous cells exist.
With regards to the other health issues, I would get a medical oncologist to lead your dad's case, as commented by Hopeful above, because of the medication for the type 2 diabetes mellitus (DM2). I wonder if the kidneys are at 100%. DM2 is a major risk factor for kidney disease and that would prohibit the use of particular contrast agents in image studies. You need to discuss the above with the physicians treating your dad and when at consultations for second opinions.
Can you describe the medications of your dad? Metformin is used in the treatment for diabetes but it also has shown benefits in the treatment of PCa. (just like killing two birds with one stone)Regarding DM2 and PCa;
http://ascopubs.org/doi/abs/10.1200/JCO.2016.67.4044?journalCode=jco
Regarding DM2 and the kidneys;
https://www.kidney.org/atoz/content/diabetes
Regarding DM2 medication;
https://www.ncbi.nlm.nih.gov/pubmed/27079349
You doing it well in researching and educating on the matters of PCa. Your dad is surely greatful for your help. Prostate cancer does not change overnight even in Gs 10 guys. Do things but use wisdom, move forward coordinately and timely.
Best wishes,
VGama
My father is on the following diabetic medications:
Metformin Hydrochloride 500 mg
Glimepiride 1mg
Have a question - I have received MRI and Whole body bone scan appt on Monday. Still trying for PET CT Scan appt. Can PSMA PET Scan be done while on Bicalutamide dosage? Or the results will be impacted because of the drug?
Thanks.
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Check with a medical oncologist
I would suggest you to copy our discussions if they are dear to you. I believe that the CSN administration is not satisfied with my comments/posts to the many. They just deleted one entire thread addressed to me recently.
The best person to inquire about all drugs (your dad's taking) interaction or influence on the PET PSMA scan is the radiologist doing the exam. My lay opinion is that bicalutamide will cause no interference with the PSMA nuclear tracer as this does not use the cell's AR (androgen receptors) for its pathway to identify and glue to a prostatic cell. A LHRH agonist or antagonist (Lupron, Firmagon, etc) could have some influence as it would turn prostatic cells less active.
However, the contrast used in the CT exam or even in the MRI, may be prohibitive if your dad has advanced CKD (chronic kidney disease). As I commented above, DM2 is a major risk factor for kidney disease and many guys do have CKD without knowing. I wonder what may be his filtration rate (GFR) and creatinine level. This issue may constitute a problem in the exams required for PCa matters. A medical oncologist would provide you the answers and peace of mind.
Best
VG
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So sadVascodaGama said:Check with a medical oncologist
I would suggest you to copy our discussions if they are dear to you. I believe that the CSN administration is not satisfied with my comments/posts to the many. They just deleted one entire thread addressed to me recently.
The best person to inquire about all drugs (your dad's taking) interaction or influence on the PET PSMA scan is the radiologist doing the exam. My lay opinion is that bicalutamide will cause no interference with the PSMA nuclear tracer as this does not use the cell's AR (androgen receptors) for its pathway to identify and glue to a prostatic cell. A LHRH agonist or antagonist (Lupron, Firmagon, etc) could have some influence as it would turn prostatic cells less active.
However, the contrast used in the CT exam or even in the MRI, may be prohibitive if your dad has advanced CKD (chronic kidney disease). As I commented above, DM2 is a major risk factor for kidney disease and many guys do have CKD without knowing. I wonder what may be his filtration rate (GFR) and creatinine level. This issue may constitute a problem in the exams required for PCa matters. A medical oncologist would provide you the answers and peace of mind.
Best
VG
Your comment about the deletion is so sad, Vasco.
A sentence from you is worth more than everything the CSN Administration has ever done in their combined lives.
max
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creatinine is normalVascodaGama said:Check with a medical oncologist
I would suggest you to copy our discussions if they are dear to you. I believe that the CSN administration is not satisfied with my comments/posts to the many. They just deleted one entire thread addressed to me recently.
The best person to inquire about all drugs (your dad's taking) interaction or influence on the PET PSMA scan is the radiologist doing the exam. My lay opinion is that bicalutamide will cause no interference with the PSMA nuclear tracer as this does not use the cell's AR (androgen receptors) for its pathway to identify and glue to a prostatic cell. A LHRH agonist or antagonist (Lupron, Firmagon, etc) could have some influence as it would turn prostatic cells less active.
However, the contrast used in the CT exam or even in the MRI, may be prohibitive if your dad has advanced CKD (chronic kidney disease). As I commented above, DM2 is a major risk factor for kidney disease and many guys do have CKD without knowing. I wonder what may be his filtration rate (GFR) and creatinine level. This issue may constitute a problem in the exams required for PCa matters. A medical oncologist would provide you the answers and peace of mind.
Best
VG
We got his creatinine level tested 2-3 days back, and it was normal. Haven't tested GFR though.
Your replies are so informative, thanks a lot! Really helps in these tough times.
Thanks.
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Clearance at 24Hours
Clearance at 24Hours is the due exam. A very low percentage would mean the need for dialysis after any MRI or CT done with contrast. Please do the tests and discuss with his doctors.
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Treatment update
Hi All,
Some updates to my dad's treatment:
We got the Bone scan and MRI done.
Bone scan - No metastates found in scan report.
MRI - Large extra-prostatic extension, more on right side with involvement of both seminal vesicles, right antero-lateral wall of rectum and right lateral pelvic wall. No evidence of retroperitoneal lymph node enlargement is noted.
Clinical stage given by doctor - T3 N1 M0.
Doctor has ruled out surgery or prostatectomy as the cancer has spread beyond the prostate. They have advised the following treatment (ADT + EBRT):
1) Currently Bicalutamide 50mg 3 times a day
2) Injection Triptorelin - once in every 3 months for 2-3 years - Bicalutamide to stop after 1st injection
3) EBRT - radiotherapy for 4 -6 weeks
followed by regular PSA follow-up.
I have taken 2-3 opinions (treating urologist + oncologist), and all doctors are agreeing on the same treatment plan. As per them, this is the standard treatment for this stage of prostate cancer.
Need your opinions on this, are there any other treatment approaches to this case?
Thanks in advance.
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alternativesgleason10 said:Treatment update
Hi All,
Some updates to my dad's treatment:
We got the Bone scan and MRI done.
Bone scan - No metastates found in scan report.
MRI - Large extra-prostatic extension, more on right side with involvement of both seminal vesicles, right antero-lateral wall of rectum and right lateral pelvic wall. No evidence of retroperitoneal lymph node enlargement is noted.
Clinical stage given by doctor - T3 N1 M0.
Doctor has ruled out surgery or prostatectomy as the cancer has spread beyond the prostate. They have advised the following treatment (ADT + EBRT):
1) Currently Bicalutamide 50mg 3 times a day
2) Injection Triptorelin - once in every 3 months for 2-3 years - Bicalutamide to stop after 1st injection
3) EBRT - radiotherapy for 4 -6 weeks
followed by regular PSA follow-up.
I have taken 2-3 opinions (treating urologist + oncologist), and all doctors are agreeing on the same treatment plan. As per them, this is the standard treatment for this stage of prostate cancer.
Need your opinions on this, are there any other treatment approaches to this case?
Thanks in advance.
gleason,
There are always "alternatives" I suppose. But his treatment plan sounds very thorough and reasonable. Surgery would indeed be a bad idea for a man his age with diabetes, since there is presumption that the disease has escaped the gland.
The EBRT has some slight possibility of eradicaiting all of the disease, but regardless, HT, when played well by a medical oncoogist, can often give many years of quality life to a man, even with advanced disease. His medical team leader needs to be the medical oncologst incidentally, not his urologist.
max
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How much medication can your dad sustain?
I would think that his doctor has also discussed about chemotherapy, but he may want to keep it as a future weapon in case this combi (RT + HT) fails. Surely the results from the MRI suggest your dad's case being very advanced. This together with the high Gleason score 10 is suggestive of an aggressive cancer that needs to be tackle the soonest. Starting with HT (Bicalutamide) was proper but the RT is questionable as commented by Max above. Will RT treat such advanced case or will RT just provide some relief on the burthen of the widely infested area?
I believe that his doctor's recommendation of RT is solo based on the scans which imply the possibility of that being a localized case and that the reason for the clinical stage of T3N1M0, but is it correct? Well, .... independently of the real situation RT may not cure your dad but will surely kill the cancer on the field of the rays. The worries set in the risks and side effects of the therapy. How much can your dad with DM2 handle with the medication for any RT consequences?
The terms in the clinical stage mean the following: T3 signifies that cancer is not contained. N1 signifies that the lymph nodes were invaded (no comment on its location). The M0 may have been attributed for the negative bone scan however this test is not reliable in finding small sized PCa and would not provide a clue on metastases at lymph nodes in the upper body, the lungs or the liver. My lay opinion is that this M0 is questionable and quite often in similar cases they are false negatives for existing far metastases (M1). Maybe attributing an "MX" would be better. If M1 has been attributed then RT would not be recommended but chemotherapy (plus HT). The PET scan could give you a more realistic conclusion.
Please note that DM2 patients have limitations on medication and therefore limitation on treatments. Constant vigilance is required to avoid deterioration of patient's health. Urologists and radiologists have no clue on the matter.
Best
VG
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Treatment update - Jan 2017
Hi All,
Writing on this forum after a long time. The following updates on my dad's condition:
1. He has taken the first Triptorelin 11.25mg injection on 6 Oct. Bicalutamide has stopped.
2. Repeat PSA in Nov 2017 (after first ADT injection)- 4.4 approx - which doctors said should have come down more.
3. Also, since he was having issues with the urine flow towards beginning of Dec 2017, urologist had done a cystoscopy to clear the passage - cystoscopy revealed tumour growth in prostatic urethra - which doctor said will improve after the EBRT only.
4. 2nd Triptorelin injection to be given on 5th Jan 2018.
5. PSMA PET CT scan done. Reports will come in 3-4 days.
He is having severe issues in quality of life mainly because of the following increasing symptoms. These symptoms have developed rapidly over the last 2-3 weeks.
1. He has to get up multiple times at night (5-6 times) for urination. This means he gets very little sleep and normal body functions are hampered.
2. Hematuria (blood + CLOTS) coming in urine, and this happens multiple times a day. It increases if he has to travel or sit for a longer time. Doctor said that these clots are coming from the tumour cells, however not clear why clots are increasing though he is on Triptorelin injection already.
3. Extreme fatigue - gets tired very easily. He was a very active person and loved to go out always. But now, it is difficult for him to even go out of the house for walking for 10-15 mins.
4. Pain in pelvic area, thighs. Also has pain if required to sit for longer period of time.
Are the above symptoms because of "tumour flare"? Urologist has asked him to take bicalutamide again (twice a day for 15 days) and given another tablet for pain (Baclofen 10mg). However, all these symptoms continue to be there.
Oncologist had suggested starting EBRT by end of Jan 2018 - he expected the tumour to shrink a bit after 2 Triptorelin injections, so that EBRT side-effects are less. However, he will give final advice after PSMA PET scan results.
My question is - anybody can advise regarding the above symptoms, and the causes for it? Also, what are the medications to alleviate these symptoms? Are these symptoms common or is an indication of a growing tumour?
Very worried,
gleason100 -
Get help from a medical oncologist
The symptoms you describe above under the items 1 and 3, are typical side effects from ADT. Items 2 and 4 could be due to Urethritis, an inflammation caused during the intervention to unclogged the urethra (done together with the cystoscopy). I believe his doctor did it using a boogie to widening the stricture. The area is now very sensitive and the wound hard to heal for the constant flow of urine. The inflammation could also be causing urgency in urinating. Your dad may have to use a catheter to allow proper healing. To improve fatigue, afternoon naps are good. To avoid frequency he may try changing his life style, eating dinner earlier and lesser liquids at evenings.
I think it better you inquire his doctor. He will provide medication to counter the effects.SBRT will also cause inflammation in the urethra, so that it should be started after proper healing. I still think it better for your dad to do extra exams now in preparation for the treatment. A colonoscopy to verify any ulcerative colitis (would prohibit any radiation to the area) and a DEXA scan to check bone health (bone metastases would require extra treatment). Surely if the cancer is widely spread then SBRT may not be proper to care for your dad's case. Please read previous discussions.
I am curious on the PET results.
Best,
VG
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PET scan results
Hello VG,
Here are the PET scan results:
Prostate gland is enlarged with heterogeneously increased mass lesion. The lesion involves both sides of the midline. Extra-capsular extension is seen on right side up to the right lateral pelvic wall. The lesion is not separable from the bladder neck and rectal wall. Extensive heterogeneous radiotracer uptake (SUV max 10.0) is seen in the lesion.
Post TURP status is noted. No abnormal PSMA expressing pelvic or retroperitoneal lymphadenopathy is noted.
No PSMA expressing skeletal lesion is noted.
Liver/GB/Spleen/Kidney/Pancreas/Adrenals appear unremarkable show no abnormal radiotracer concentration.
1. Large prostatic mass lesion with heterogeneously increased PSMA expression
2. No abnormal PSMA expression lesion elsewhere in the body
Urologist changed his 2nd injection from Triptorelin to Lupron 22.5 mg.
Repeat PSA (2 days before) - 3.4
Thanks,
gleason10
0
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