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Cancer: Prostate Message Board

Deciding Treatment


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Old 05-11-2018, 12:19 AM   #1
mufj
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Deciding Treatment

Hi
This is my first post so forgive if I don't provide complete info

Was recently diagnosed with PC. PSA=4.3,DRE found nodule, 12 cores, 1 positive-GL(3+3), 5%,0.5mm
Now need to decide what to do

For starters I am palnning on switching urologist cause the one I have does not provide me with much info on what I am facing. However his recommendation is active survallence. PSA and DRE at 3, 6 and 12 months. at 12 months another biopsy. If DRE or PSA show a significant change then a biopsy. He provides minimal info on radiation and surgery option. Currently have another exam scheduled(3Mo). No imaging or other testing planned

Have spoken to another uro who recommends (based on my biopsy) surgery(admits his bias) and has set me up with appointment with a surgeon and radiologist to get more info. Want to do MRI, CT, bonescan and xray to get more info. Also did DRE

First question I have is on active surveillance and the probability that a tumor of this nature will change. There is a lot info out there that little change is expected but should be monitored.

My instinct tell me to monitor this for about a year and see what happens If changes occur will opt for either surgery or radiation. Is there any testing that can be done to get more info on aggresivenesss of gl6 tumor.

A concern I have is I am 67 and otherwise in good health and if I wait too long there could be health changes and I may not easily tolerate surgery or radiation.

Plan to switch to the second uro and do the above testing per his recommendation. does not make sense not to do imaging especially with active surveillance but then I am no expert

any comments appreciated
thank in advance

 
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Old 05-15-2018, 09:24 AM   #2
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Re: Deciding Treatment

Hi mufj,

Welcome to the Board!

First of all, your case statistics look excellent, giving you a good shot at success with active surveillance. As it is now 2018, we have come to know a lot about active surveillance, including how to do it and how well it works, which is very well indeed. This is based on published research from around the world at many leading institutions that treat prostate cancer, which you can research yourself. The one issue you mentioned to watch is that a nodule was detected; many patients with a nodule do well on active surveillance, but it does somewhat elevate the risk of needing treatment at some point, and it also elevates the worth of getting a multiparametric MRI at this point.

You might want to reconsider a relationship with your first urologist. His approach is quite reasonable and state-of-the-art, including his ignoring the once widely used bone and CT scans that have proved so useless except for patients who have certain characteristics of aggressive prostate cancer, which are not noted in your post. Overuse of such scans used to be widespread, and I suspect that is what is happening with the second doctor. Here’s the problem: neither the formerly widely used bone scan that is based on the element technetium (Tc), nor the CT scan can pick up metastases that are small, and that is almost always the case for patients who have low-risk case characteristics and even in many patients with higher risk cases, like me. It takes about 10% of cancer involvement at a bone site for the Tc bone scan to pick up cancer; therefore, if there is only 5% involvement, detection is highly unlikely. Similarly, it takes a metastasis about the size of a pea for a CT scan to pick it up. It is both extremely unlikely that a low-risk patient will have any metastases, and even if he does, it is extremely unlikely that they will be large enough to be picked up by either of these scans. Moreover, if the cancer is really aggressive, it will be reflected pretty quickly in the upward PSA trend except in rare cases. Thus the use of the Tc bone scan and CT scan is unwarranted. (In late 1999 I had both after being diagnosed with a PSA of 113 and a “rock hard” prostate, all biopsy cores positive, most 100%, cancer, Gleason 4+3=7, which were circumstances warranting these scans; yet both scans were negative for me. The doctors and I were still convinced that I had "micro-metastases".)

There are now a number of superior, highly sensitive, highly specific scans that can pick up very small metastases in bone and soft tissue, but these are more expensive, and because detection is unlikely in low-risk patients, insurance will often not cover them. If the PSA trend over time and other evidence suggest aggressive cancer, then the highly reliable more expensive scans are likely to be covered by insurance and can serve as a fine tool for navigating treatment choices. (I’m mentioning the MRI scan below.)

However, rapport with your doctor is important, and it may be that your first doctor is just not on your wavelength. If so, you might want to get some more opinions to find someone who is. Alternately, you might try working with your first urologist (and the office staff) to explain your concerns about communication and becoming an empowered patient, as well as your interest in an mpMRI. I would also ask how the DRE finding of a nodule affects his view of active surveillance for you. Reconnecting tentatively with the first urologist could reveal whether the relationship is worth pursuing with a doctor who appears to be practicing an up-to-date form of medicine.

Regarding the second urologist, I’m getting a queasy feeling and sensing a smooth-talking salesman. It is true that a multiparametric MRI (mpMRI) is increasingly being used to screen patients for active surveillance or treatment; doing an mpMRI now is a reasonable step, though in your quite favorable circumstances it also seems reasonable to do active surveillance without the mpMRI for a while to see how the cancer behaves. (Some cancers for “low-risk” patients, as you seem to be, take 100 years or more to double in size; a substantial majority take a lot less time, but still enough time to give the patient and doctor ample opportunity to observe, take careful aim, and react effectively. If it were me, I would get an mpMRI if it were reasonably convenient (as it should be for you) and affordable (as it most likely would be, depending on your insurance and circumstances). As for the bone and CT scans, YUK! That would also apply to the X-ray. However, there may be characteristics you haven’t mentioned that would justify such scans, and I have had no enrolled medical education. Also, I am really suspicious of the second urologist because he is nudging, pushing you toward surgery rather than active surveillance. Did he even mention active surveillance? Did he mention it but damn it with faint praise? From what you have presented, his approach is at least a half-dozen years behind the times! Some doctors are really good at herding their patients toward what the doctor wants to do. If the patient is a “decisive” person, they will emphasize that now is the time for a decision. If the patient is hungry for information, they will pitch unnecessary and useless scans and tests. If the patient is extremely anxious, they will play on that, etc. They may also use a loved one’s tendencies to channel the patient. The antidote to this is to become an empowered patient and to use the good judgement that we all employ in our better choices. If it were me in your shoes right now, I would seriously consider postponing indefinitely those appointments made by the second urologist. Again, I am not a doctor, but it strikes me that ordering those bone and CT scans in your case is borderline malpractice.

Now finally for your “first question”. Research has convincingly shown that true Gleason 6 cancer does not metastasize! (Some exceptions have been argued, but it is exceedingly rare if it occurs at all.) Such Gleason 6 cancer may grow outward, but often at a slow pace. When patients with cancer assessed as Gleason 6 do sometimes later prove to have more aggressive cancer, it is almost certain that they had such aggressive cancer earlier but it was not found in the biopsy sampling. Active surveillance, increasingly including the mpMRI scan, is proving an excellent safety net to catch cases of such more aggressive but stealthy cancer. (On the other hand, for cases that appear to be quite low risk, monitoring PSA and with DREs is also going to be effective most of the time, which is what your first doctor is thinking.) Expert doctors no longer fear that “one cancer cell” will escape detection and ruin prospects for their low-risk patients. You can check this out on PubMed; I or others here can help if needed. It is now also known that even when more aggressive prostate cancer does metastasize, in the early stages of metastasis, it is typically well within the range of effective radiation for a cure, though not of surgery, although with some unfortunate exceptions.

You could do some additional testing to safeguard against an aggressive but stealthy cancer. For instance, a number of good genetic tests are now available (such as gene panels that include assessing BRCA2 and also BRCA1 mutations, as well as others). However, the question is whether they would be cost effective at this stage of your disease and of this stage of genetic testing technology, which is improving rapidly. If you are very uncomfortable with uncertainty, such tests could help reassure you, and my impression is that some expert researchers in active surveillance are moving toward early use of genetic tests for their active surveillance candidate patients, especially those with some worrisome case characteristics, such as family cancer history and specifically, these days, known BRCA2 and/or BRCA1 mutations in the family. Some institutions are now exploring the use of gene testing panels and subsidizing their use, which can make them quite inexpensive. But you better make sure of the cost first.

Regarding risks of deferring treatment, at age 67, and in good shape, you should have at least several years of eligibility for surgery, should you need treatment, and usually doctors and patients have a good idea whether active surveillance will work long-term after two or three years, which include that first-year confirmation biopsy. However, radiation, these days, is just as good as if not superior to surgery, and age does not affect tolerance of radiation much. However, if you have significant urinary issues now, that would tend to make radiation a less attractive option, which would elevate surgery as the better choice and mean you had a shorter decision window to opt for surgery instead of continuing on active surveillance, although the window would still be at least a year and likely several years long. It is important to bear in mind that technology is substantially improving every year (sometimes it seems every month) for prostate cancer treatment; the day may come when we just take a course of pills and are done with it. Unfortunately, there is no sure fire solution on the near-term horizon, and the choice of active surveillance or treatment at some point is ultimately in your hands.

I think your instinct to monitor for a year is a good one, but it is always tougher to think this through when you are the one in the hot seat.

Good luck!

 
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Old 05-15-2018, 11:58 PM   #3
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Re: Deciding Treatment

Wow thanks much for the detailed reply

First my experience in dealing with medical professional is very limited especially something as serious as this. I need to find a Uro that I am comfortable with and not really sure the best way to go about it

With the first Uro he did DRE and recommended and ordered biopsy and only explained that it was and ultrasound guided taking a sample with needle. But later when I found that 12 sample were taken I freaked and got an appointment for discussion. Here I basically had to pull info from him. I mentioned about MRI and he said I don't do that, youre insurance does not cover it, I will order it but you have to pay $1500. The way this was said floored me and was an instant turnoff. Also they never told me the side effects of the antibiotic(Cipro). The night before I had severe cramps in the lower legs. and had a serious itching tingling feeling for days which eventually subsided. At the time did not associate this with the antibiotic till a friend told me that was possible. And looking on line it looks like that is the case. The Uro is with Delaware Valley urology

Regarding the second yes he is pushing surgery, mention active surveillance but did not give any praise it. So he is not up to speed on active surveillance. Not qualified to comment on additional test. From my amateurish perspective it seems to make sense to be sure nothing else is going on. So I value youre comment in this regard. . Youre comments regarding him don't seem far off the mark. By the way he is with penn medicine

An issue that I have a difficult time wrapping my head around is if this is cancerous what is so special in this situation that make it unlikely to spread. To me cancer spreads and metastasizes. My biggest concern is it metastasizing and ending up somewhere else. I can accept that if this tends to change slowly and just grows larger cause it is small then there is time to address the situation. Any good references for me to get a better understanding.

Any good references for uro who support a good active surveillance program.

what is about a nodule that makes treatment somewhat more likely

To me it seems some type of imaging should be done now to get a baseline then again sometime in the future(how often??) Also given the sampling limitations of biopsyies an additional biopsy with a focus around the tumor site to better characterize. but then I am not a medical professional.

Some additional info
I do have a history of cancer in the family, mother died of breast cancer, father liver cancer, uncle lung cancer, uncle brain cancer, cousin colon cancer. Although some of these(liver,lung) are lifestyle related.

Other than the nodule DRE dis not indicate any other abnormalities, No urinary problems, and other than being considered pre diabetic no other problems identified


Well hope I have not rambled too much-but a lot is going thru my head

Again thanks much and hope all is well with you

 
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Old 05-18-2018, 05:21 AM   #4
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Re: Deciding Treatment

Hi again mufj,

I don’t have much time at the moment, but here is some information that may help for now to illustrate that active surveillance is a highly effective choice for appropriate patients.

Here is one study as an example of the use of mpMRI to guide decision making, especially regarding active surveillance. You can find others in www.pubmed.gov by searching and then clicking on the blue hypertext, and when you get the abstract, on the blue hypertext plus symbol. Here is another study, from 2018, which shows the kind of research on active surveillance now being done to improve the already excellent results while steering men who really need treatment to treatment: https://www.ncbi.nlm.nih.gov/pubmed/29030317 . Here is another 2018 paper that addresses an important side effect controversy, erectile function, involving the choice of active surveillance or immediate surgery: https://www.ncbi.nlm.nih.gov/pubmed/28851580 . I and others here can help explain text in these abstracts or complete reports that may be puzzling.
If you go to www.pubmed.gov and search for – active surveillance AND prostate cancer , and click the filter for abstracts on the left of the page, you will get 2,515 hits. This very high volume demonstrates how active the research is on active surveillance.

I hope to get back to answering questions in your post.

Good luck,

Jim

 
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Old 05-28-2018, 09:21 AM   #5
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Re: Deciding Treatment

Hi again,

I'm replying again to another piece of your response of 5/16 at 2:58 am. You wrote: "An issue that I have a difficult time wrapping my head around is if this is cancerous what is so special in this situation that make it unlikely to spread. To me cancer spreads and metastasizes. My biggest concern is it metastasizing and ending up somewhere else. I can accept that if this tends to change slowly and just grows larger cause it is small then there is time to address the situation. Any good references for me to get a better understanding."

You are far from being alone with this concern and belief. In fact, many doctors embraced it in the past. Even prominent surgeons (urologists) treating prostate cancer believed that if just one cancerous cell escaped it could lead to metastasis that would kill the patient. Some oncologists also believed that. I don't know other cancers that well, but I believe that is true about some of the more deadly cancers. However, it is NOT true about "low-risk" prostate cancer!

The reason we know that is that we now have convincing, compellingly clear results from research. The research has been done at multiple sites around the world and is highly consistent. The results are not only about surviving prostate cancer, but also about overall survival and imaging and molecular level evidence and understanding about what is happening. Much of this research comes from long-running studies that follow prostate cancer patients who are being managed with active surveillance. Among other lessons, it is now known that it is extremely rare for Gleason 6 or lower prostate cancer to ever metastasize.

The following recent paper from 2016, which directly relevant to your concern, is from one of the centers in the list below with a very long running and large group of patients. https://www.ncbi.nlm.nih.gov/pubmed/26707510 It is specifically a study of the few patients in their group of AS patients who later developed metastasis. Only 2 of the patients with Gleason 6 developed metastasis, with almost all who did develop metastasis in the Gleason 7, substantially riskier, group of patients (28 of Gleason 7 patients developing metastasis out of 980 total patients; there were 769 patients, all of whom must have had, by definition, Gleason 6 or lower cancer, and therefore only 2/769 or 0.3% developing metastasis, and neither had surgical pathology that would have confirmed there was no higher Gleason than revealed in the biopsy). This center is now considerably more restrictive in offering AS to Gleason 7 patients.


Here, as examples, are some of the active surveillance studies from various treating/research centers (all found on www.pubmed.gov, with the filter for "abstracts" in use for all); the results indicate the success, which at least reflects freedom from metastasis in these studies:

https://www.ncbi.nlm.nih.gov/pubmed/23271779 (from a center in Canada with a very long running series of AS patients, with a link to a free copy of the entire paper)

https://www.ncbi.nlm.nih.gov/pubmed/23234624 (a study combining results from four centers; 1 patient out of 262 in the study developed metastasis after 38 months on AS; of the 43 patients for whom surveillance revealed a need for treatment, 41 showed no later progression of their cancer at an average of two years after treatment)

https://www.ncbi.nlm.nih.gov/pubmed/21464416 (this is another long-running, large study; this study used strict criteria for AS eligibility - in other words, fewer patients were offered AS, and, as I recall it, the doctors moved their doubtful patients to treatment more rapidly)

https://www.ncbi.nlm.nih.gov/pubmed/27329565 (a study involving ten years of follow-up of 5,302 men from 18 countries, published in 2016)

https://www.ncbi.nlm.nih.gov/pubmed/18433013 (321 men on AS at a US West Coast institution)

 
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