Hello everybody. Got the news 3 weeks ago about having prostate cancer. For the last 10 years my PSA levels ranged from .6 to .7 All my DRE exams were normal for the same time period until this year in late May at annual physical. My primary care doctor felt a "palpable nodule and ordered a new PSA. It came it at .8. Due to the presence of the nodule she referred me to a urologist. He confirmed the nodule and did a 12 sample biopsy. One tissue sample showed cancer in 11% of the section. The urologist ordered a full body bone scan and a CAT scan with and without contrast. I am waiting for those results and will review them with a radiation oncologist next week. I plan to get a.second opinion for treatment from a Da Vinci laparoscopic surgeon the following week.
Newly Diagnosed: Hello everybody. Got... - Prostate Cancer N...
Newly Diagnosed
By the way, my Gleeson score for cancerous sample was a 6.
Slow it down! You have plenty of time to make a well-considered decision. I don't think anyone should be making treatment decisions for at least a month following diagnosis (I took 9 months). You should not have gotten a bone scan/CT. The first step is to have your biopsy results reviewed by Epstein's lab at Johns Hopkins (cost is $250).
Assuming Epstein confirms the small amount of GS 6. You should meet with a doctor who specializes in Active Surveillance. Most men with your diagnosis NEVER need treatment.
If after some time passes and your emotional temperature comes down, you still insist on treatment, there are several different radiation oncology specialists (e.g., SBRT, LDR brachytherapy, HDR brachytherapy) you should see in addition to a high-volume surgeon.
Hello Tall,
Nice to meet you! Thanks for your advice. I worked as a factory manager for 40 years and am used to fixing a problem "asap". I will slow down. How do I start the process to have Epstein's Lab review my biopsy results?
Follow instructions at this link:
pathology.jhu.edu/departmen...
Or just call the uro who did the biopsy, and ask them to send the slides to Epstein for a second opinion. It's a very common thing to do.
Hi Bob,
Nice to meet you! What type of surgery did you elect to have? I am getting ready to turn 65 in January and am in relatively good health only taking two medicines. Low dosages for elevated blood pressure and cholesterol. I am inclined to treat the cancer now rather than use "active surveillance" , however the side effects of either radiation or surgery are worrisome for a married, sexually active, and fully continent man. Still trying to make sense of it all...
Your inclinations may change with time and knowledge. It is almost everyone's first reaction to "just cut it out." That may or may not be the decision you come back to after the process.
My urologist's plan for active surveillance if I decide to pursue it is as dollows:
PSA test every 3 months
DRE every 6 months
Biopsy every 12 months
Sound about right or too much?
Most programs have relaxed the requirement for annual biopsies after the first mpMRI-targeted or template-mapping confirmation biopsy. Other reforms include PSA only twice a year. Some programs have eliminated the DRE after the first one. Over half the men with low risk PC have shown no signs of progression in 20 years (so far).
Fox.....I was diagnosed in January 2017 and it was a complete shock. My initial reaction was identical to yours as you described it and since the biopsy was done by a surgeon, quite naturally, he agreed that getting it out ASAP was the appropriate thing to do. Who knows, that could have worked out just fine for me but I was advised to put on the brakes and become educated about what was in store for me. My favorable intermediate risk G7 did not pose any immediate threat so why not take the time to read, read, read, and then read some more. I read books on prostate cancer, forum posts, blogs, studies, etc. I asked questions of many individuals and found that the most valuable information came from other guys who had already been treated with a whole variety of different specific treatments with many and varied side effects, prospects for long-term remission or cure, and impact on lasting quality of life. I will be eternally grateful to TA and others who advised me to slow down and learn. As a result, I feel I made the best decisions about Drs. and treatment that I could have made......for me. Fortunately, with your diagnosis, you can take the time to do your homework and approach whatever you decide to do with confidence and resolve that it will be the right choice for you. There "ain't" no backing up once you begin treatment. As you will see if you read the accounts of multiple people who have selected a particular treatment, each treatment has the potential for affecting every individual differently. You should know what all the possibilities are and make your judgment for treatment, if any (active surveillance may be the best option), based upon being well informed rather than jumping into any treatment that is life-changing because a surgeon or radiologist recommended their specialty. I sure wish you the best. Get your slides examined by Dr. Epstein (I did) and you will eliminate any possibility of lab error on your initial diagnosis. I don't think there is a change very often, but if there is, that can be extremely valuable information. Good luck.
Thanks for the guidance19tarpon47!
Surgery through the abdomen or perineum?
Transperineal surgery is rare - do you have a surgeon that specializes in that?
No - I just watched a video about it filmed by a doctor in New York City. I live 45 minutes west of the home of the World Champion Philadelphia Eagles!
If you live near Philly, I hope you will add Eric Horwitz at Fox Chase to the list of doctors you will see. He can do HDR brachytherapy.
OK - my urologist is in the Fox Chase network - I will look up Eric Horwitz - thanks!
Just got the results of my bone scan - does this make any sense to you? I see the doctor next Wednesday.
CLINICAL HISTORY: Prostate cancer
COMMENT: Following the IV administration of 26.6 mCi technetium 99m MDP images
of the whole body were performed in the anterior and posterior projections.
COMPARISON: This examination was correlated with the concurrently obtained CT of
the abdomen and pelvis.
Findings: There is physiologic distribution of the radiotracer throughout the
osseous structures. Both kidneys are visualized. A focus of asymmetric
radiotracer uptake is noted in the left iliac bone, which corresponds to a
sclerotic lesion on the accompanying CT. There are also foci radiotracer noted
in the left posterolateral ninth and 10th ribs. These correlate to the vague
areas of sclerosis on the 6/10/2018 CT. Left knee arthroplasty is noted.
--
I
IMPRESSION:
Foci of radiotracer uptake in the left iliac bone and left posterolateral 9th
and 10th ribs. Benign uptake is most likely favored given the recently obtained
PSA of less than 1.0 ng/mL. A 3 month follow up is recommended to ensure
stability, as well as serial PSA correlation.
Just got the results of my bone scan - does this make any sense to you? I see the doctor next Wednesday.
CLINICAL HISTORY: Prostate cancer
COMMENT: Following the IV administration of 26.6 mCi technetium 99m MDP images
of the whole body were performed in the anterior and posterior projections.
COMPARISON: This examination was correlated with the concurrently obtained CT of
the abdomen and pelvis.
Findings: There is physiologic distribution of the radiotracer throughout the
osseous structures. Both kidneys are visualized. A focus of asymmetric
radiotracer uptake is noted in the left iliac bone, which corresponds to a
sclerotic lesion on the accompanying CT. There are also foci radiotracer noted
in the left posterolateral ninth and 10th ribs. These correlate to the vague
areas of sclerosis on the 6/10/2018 CT. Left knee arthroplasty is noted.
--
I
MPRESSION:
Foci of radiotracer uptake in the left iliac bone and left posterolateral 9th
and 10th ribs. Benign uptake is most likely favored given the recently obtained
PSA of less than 1.0 ng/mL. A 3 month follow up is recommended to ensure
stability, as well as serial PSA correlation.
It means that you should never have been given a bone scan - they are only for unfavorable risk patients. It's hard to imagine why your doctor ordered one for you with your minimal GS 6 and very low PSA. Now, they will have to investigate those areas of sclerosis (bone scans pick up bone overgrowth, not necessarily cancer). If you ever had a fractured rib or pelvis, they will show up on a bone scan, as will arthritis. Unfortunately, this will add to your anxiety.
Do you think this is an appropriate reaction to finding a palpable nodule during the DRE? Maybe an overreaction?
The palpable nodule was the reason to give you a biopsy. unless he felt cancer growing outside of the prostate or into your seminal vesicles, there was no reason for a bone scan.
One last question for tonight. How do I use this forum so that I can ask a question that everyone can see and have a chance to resond? If I type and hit "reply" to just you or Bob does the community are the reply/question from me?
Everyone can see it and respond.
Gosh. I'm glad I live in the UK. It must be hard for you having to find out all this information, get second opinions, pay for this and that, then apparently completely make treatment decisions on your own.
I like to be informed but I wouldn't have wanted to take on all that responsibility , expense and stress.
With suspicion raised by PSA and DRE it's more or less automatic to have a biopsy here. If biopsy is positive it's automatically recommended to have a bone scan and MRI. Both are of no great inconvenience. This gives a Gleason score and TNM staging. The urologist and or multi-disciplinary team then give recommendations for treatment options.
The choice of treatment is a shared decision between you and the urologist.
The urologist is neither surgeon nor oncologist and has no bias.
There doesn't seem any reason for a second opinion. In the rare case where a second opinion is sought, it's probably because it's advanced.
It seems a great shame that in the U.S. you appear to distrust the advice given you, (possibly not without cause) and there seems to be no singular evidence based pathway that everyone can follow rather than particular individuals opinion.
Of course the choice is yours, it just seems you're so isolated and alone in making it and it depends on finance.
With Gleason 6, your biopsy result and NO (bone scan shows no metastases), surveillance is an option, (with an unpredictable future), radiation or surgery would most likely be curative.
The latter have life changing consequences, but these days quality of life can be fairly well preserved.
As others say, no rush!
Tim, in the USA, urologists are the surgeons who perform (and profit from) prostate removal.
We have had a huge problem with them rushing newly-diagnosed men into unnecessary overtreatment. They are not unbiased advisors.
But, since all our medical associations are now recommending active surveillance for low risk men, attitudes are changing.
Hi, yes I had heard that they are biased. Towards making a profit, I believe. Is there no federal regulation or guidance on what they should or should not do, state guidance, or none at all?
They have professional organizations like the American Urological Association that set guidelines. Doctors may want to make a profit, but they also don't want to get sued by operating outside of accepted professional standards. There is no such thing as a person without biases. Even in the UK, it is up to the patient to do some calm soul-searching to figure out what is most important to him.
Of course, you're quite right.
Hello Fox2018
Like you, I was diagnosed with Gleason 6 last month. After a full month of research and taking time to seek advice from others, I am very satisfied with my decision to take my doctor's recommendation of Active Surveillance.
There are a lot of the doctor community that believe (if accurately diagnosed) that a true Gleason 6 will never metastasize and therefore shouldn't be called the "C" word and should instead be called a neoplasm. The problem though, is that about 50% of the initial Gleason scores could be inaccurate, with some of the more aggressive cancer missed probably because it is so microscopic the biopsies missed it.
I've asked my doctor to also do a Polaris test, which will look at the biopsies I just had, except not through a microscope. The Polaris test actually looks at it from a DNA perspective. This will help me have more confidence in the Active Surveillance approach. If not for the men on this site, I may have been also been super reactive.
I'll be 60 next month, but dangit, I'm a YOUNG 60! Take your time.
I also sent my biopsy remains to Polaris, Myraid laboratories. My score came back in the non aggressive range. I contemplated active surveillance, but chose treatment, because my Gleason score showed 3+4 and a 4+3. The 4+3 was the determining factor I chose treatment. I had 43 fractions of radiation, and do not regret my decidion.
Looks like you are getting plenty of feedback, opinions, and advice. I am 65, diagnosed with Gleason 7 (3+4) during biopsy, cancer confirmed through mpMRI and Decipher genomic test which indicates an aggressive cancer. The additional tests were extremely helpful in making a treatment decision. I too am very action oriented but at the same time, nearly everyone told me to take my time, do some research, meet with a number of doctors (surgery, radiation, medical oncologist, etc.) get additional information, etc. It was helpful for me to get different perspectives - some experts advocate for aggressive treatment, others prefer a less aggressive approach. Personally, as I've learned more about the disease, I've tried to shy away from "you must do this" or "you musn't do that" information because each case is unique. Increased knowledge about PCa and treatment options/pros/cons are invaluable. The other key is to have a doctor you trust and have confidence in. Treatment is a very personal decision and knowing how difficult it is to make a decision, I respect whatever choices other men with PCa choose to make. I chose RALP, surgery coming up in a few weeks so I am focused on preparing myself for pre- and post-surgery. Good luck and I wish you the best of health.
Key words - have a doctor you can trust.
Also note my biopsy said Gleason 3 + 4 = 7. After surgery my histology report said Gleason score 4 + 3 = 7. We all know PSA is quite hit and miss, but the Gleason isn't perfectly reliable either.
The genomic analysis might prove to be more reliable predictor of aggressiveness, let's see.
Hopefully, there is some indication that immunotherapy may be developed for PCA which might make it a less risky option for men with intermediate risk e.g. Gleason 6 to have active treatment.
Sorry to say, the whole thing isn't terribly predictable, my quality of life post RP is currently better than it was before. There are probably many others who feel it's less.
You can't help feeling cancer is so unjust!
Thanks everybody for your comments!! Waiting for results of pelvis and abdomen CAT scan with and without contrast...
I am 78 years old and was diagnosed ten years ago, I have had Radiotherapy and it failed, I thought I could have a Radical Prostectamy after but that is possible but has the risk of incontinence ,I then tried HIFU and that also failed ,but hindsight is wonderful, my best mate was just diagnosed with PC and he was very worried about it, and he was my age, Doctor said You will die with it, not from it, he was right he fell down the stairs ,I don't know if it was worry and a drink ,or other factors, But taking time is really good advice. We don't have the same problems as our American brothers but we have the same desease.
Just got a mailed copy of my CT Abdomen Pelvis With & Without Contrast scan. Among other details is states:
The prostate gland is 4.0 cm CC by 4.5 cm transverse by 4.0 cm AP, without focal mass identified. Normal seminal vesicles. No acute bony abnormality or destructive lesion.
Partially visualized top normal left inferior inguinal lymph node. Correlate clinically. Mild urinary bladder wall thickening, likely related to submaximal distension. Otherwise, no evidence of metastatic disease.
Feedback is appreciated - I see my doctor on Wednesday.
37 cc prostate with PSA density of 0.02 - good candidate for AS.
I agree with Tall Allen’s advice 100%. It’s easy to let our male “urge “to do something” immediately run the show. Watchful Waiting” is doing something” and diet is an active act. Use this time to learn. There are great support services. I had a different diagnosis but took my time to understand what I was getting into and it helped my recovery. Your Gleeson score makes watchful waiting a real option. Lifestyle changes make a huge difference. I’m proof of it and Milliken Diet is further evidence.
Fox2018, Id consider a MRI of the prostate ( only imaging which will show possible cancers in the prostate) to make sure no additional tumors which were missed on the biopsy. Your chance of cure with surgery or radiation/seeds high but also risk longterm leakage of urine and loss of erections. I agree with slow it down which you can because gleason 6. If you were a gleason 7(4+3) or higher you would have to move it along. Options other than surgery or radiation include: Active Surveillance, Bridging therapy with Casodex, or a study (ie provenge vaccine vs active surveillance). U just missed a study with Xtandi vs active surveillance. Waiting now doesnt mean u will never go to surgery or radiation but remember every day u wait is another day ur not suffering from loss of sexual function or incontinence. Happy to talk further. I hope this was helpful!
Getting scheduled for an mpMRI prostate/pelvis with endorectal coil and a separate MRI on left hip to evaluate sclerotic lesion present in nine scan.
My oncologist is wary of the fact my PSA has doubled from .5 to .8 in 4 years, is low to begin with, yet a node has appeared in less than one year with my DRE.
She is concerned my biopsy may have missed other tumors in obscure areas of the prostate and wants better images of the gland.
What is it like to have the mpMRI prostate/pelvis enforcers coil test?
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