E-LETTER #19 - GO TO INDEX FOR EARLIER LETTERS

Prostate men need enlightening, not frightening July 2013 Long term Anxiety I have often mentioned in posts and these E-Letters the subject of depression and the importance of recognising the issue so that appropriate help can be sought. This thoughtful piece looks at what happens as time goes by and how anxiety can build, especially in partners and carers - those people looking after or who are close to people who have cancer - Anxiety Lingers Long After Cancer It seems that even though some forms of cancer, and particularly prostate cancer, may be labeled as being indolent or a chronic illness, the fact that there is no guarantee of a cancer-free survival creates the uncertainty that is at the root of much anxiety. The article makes the point that "Anxiety is a persistent problem long after the cancer has been diagnosed" and that in one study anxiety levels two to ten years after diagnosis grew to as high as 28 percent in patients and 40 percent in their spouses. I recognized this issue and tried to address it as well as a mere man can do with the site page For The Womenfolk which has links to other sites where women can discuss their issues, including anxiety with other women in the same boat. There was one paragraph in the article with which I could relate where it is said "...the husband doesn't want to worry his wife with every ache and pain, so he doesn't mention them. And he doesn't want to be micromanaged over every little symptom." That has been, and still does represent my position. I know wonder if that is fair because the paragraph continues "But if the wife finds out, she'll worry even more because he didn't tell her." Seems you are damned if you do and damned if you don't! Perhaps being very open at all times may reduce anxiety levels in a partner, but doing that would make me more anxious, I think. The Perils Of Self Diagnosis Mark and I had some unusual correspondence in May and I thought I might provide an edited version of this since the author declined to publish his experience on the site. I think this illustrates clearly some of the dangers in doing your own research. Although we certainly recommend this, there are pitfalls. On the Choosing a Treatment page we include a link to some excellent general advice in "Cancerguide: Researching Your Options". Our correspondent had a scientific background and it seemed that this gave him an element of confidence to interpret complex data although we thought his interpretation might be misleading. He had recently retired, so was presumably in his sixties. Here are brief edited extracts from his mails: I have been monitoring my PSA religiously for over 15 years. When it took a blip a couple years ago, thinking I needed a prostate biopsy, I saw a urologist who thought the blip was due to some acute urinary obstruction and BPH (Benign Prostatic Hyperplasia) so I decided not have the biopsy. My PSA stayed stable at 4.0 ng/ml for over a year but my urologist still wanted to biopsy me (even though the free PSA was above 10% at 19% and PCA3 was low at 6.8). I said no, because the PSA was not elevated and I didn't think a blind biopsy had a good chance of finding anything and there was the risk of infection from the biopsy. When my PSA jumped to 8.00 ng/ml from 4.00 ng/ml in January, 2013, I realized I might have a problem. My urologist of course wanted to blind biopsy me, and again I said no, I want a multi parametric magnetic resonance imaging scan (M-P MRI). (This is a high definition MRI scan which is carried out in a limited number of institutions). He told us that he was one of the 10-20% of prostate cancer patients with anterior prostate cancer that cannot be found with the routine TRUS biopsy because the 1.7cm needle cannot reach them and that he probably had prostate cancer stage T2c and that his Gleason Scores were likely to be 4+3 (7b), 3+4 (7a) and 3+4 (7a). He had decided that surgery RALP (Robotic Assisted Laparoscopic Prostatectomy) - was his best option and had met the surgeon who would carry out the procedure. When I asked him how he knew this detailed diagnosis without having had a biopsy he explained: From my research on interpreting M-P MRI scans I know I have three lesions, 1.4, 1.4 and 1.3 cm in size. Two are in the anterior prostate. The Gleason Grades of the lesions established by ADC (analog-to-digital converter ) and enhancement characteristics are 4+3, 3+4 and 3+4. No capsular extension was noted but one lymph node 9mm (upper limits of normal) was noted in the right external iliac region (same side as the more aggressive dominant anterior lesion) which raises the question of a local metastasis or skip metastasis (stage T4 if true). The emotional drain of having to face these prostate cancer realities really is a load to handle and makes it difficult to find the energy to persist with this research. I noticed the difference myself, when the reality sunk in that I probably was not going to match my mother's longevity (she is 94 now and perfectly fine). I tried to comfort him with some relevant data concerning the longevity of men diagnosed with prostate cancer and asked him to let us know how things went. The last mail we had from him said: Just wanted to let you know I had my 25 core MRI guided biopsy and all were negative for prostate cancer. They only saw BPH and chronic inflammation. What a relief and gift!! It is hard to believe it. I have been unable to find any studies which demonstrate that it is possible to grade any lesions with any current scan. The specialists at the institution where the scan was carried out only reported that "... they saw something..." Lies, more lies and media releases Friends of mine were concerned about a recent report in the local media. The Herald Sun for example had this to say in part: US scientists say they have confirmed a surprising 2011 study that found a higher risk of prostate cancer among men who consume omega-3 fatty acids, raising new questions about the safety of supplements. The research in the Journal of the National Cancer Institute reported a 71 per cent higher risk for dangerous high-grade prostate cancer among men who ate fatty fish or took fish-oil supplements, which are often touted for their anti-inflammatory properties. The same story was repeated all over the world. Many men of my age (and even younger men) take fish oil supplements to lubricate their old joints; to stave off heart failure and for many other reasons. They don't take fish oil to increase their risk of prostate cancer - so what to do? One of the things I suggested, to those who were computer literate, was to go along to Media Madness: Fish Oil Supplements Cause Prostate Cancer! from which they would see that not only was there no "proof" that fish oil was linked to prostate cancer, but none of the men in the study were recorded as having taken fish oil or omega-3 fatty acids. The entire media storm was not based on any sound information. It was solely for the headline value. Unfortunately many people with busy lives tend to remember headlines or don't have the time or inclination to analyse media stories, good or bad. There is a small example of this on the Yana Forum Lupron and Kidney problems where Don seeks clarification on an issue, saying "A recent JAMA article says there is an increased risk of kidney failure if one takes lupron or other such anti androgen drugs." Perhaps Don had also seen an article like this one Kidney Failure a Possible Risk of Prostate Cancer Hormone Treatment: Study which kicks off with this: "Hormone therapy for prostate cancer may dramatically increase a man's risk of kidney failure, according to a new study. Use of androgen deprivation therapy was tied to a 250 percent increase in a man's chances of suffering acute kidney injury." I posted a response (which you can see on the Forum which I will not repeat here) indicating that this was NOT what the study said and trying to emphasise the importance of analysing such information more closely before letting the headlines worry you. Yana update Al Hutton passed away in May. While it is always saddening to lose a YANA man, we can learn from people like Al that even with a very bad diagnosis, there is life after prostate cancer. Al was diagnosed with metastasised disease and a PSA of over 2,000 ng/ml. That was in 1999 - thirteen years ago. We have included another link on the For The Womenfolk page to the section of The "New" Prostate Cancer InfoLink Social Network For Wives and Partners which may be helpful for partners of men diagnosed with prostate cancer. Testosterone and Xofigo The question of testosterone supplements comes up frequently. Here is commentary on another study Supplemental testosterone therapy in men treated for prostate cancer Xofigo was approved by the Food and Drug Administration in May. The agency reviewed the drug under a fast-track priority program, approving it three months ahead of schedule. See New Radiation Therapy Prolongs Prostate Cancer Survival and US FDA approves radium-223 dichloride for treatment of men with mCRPC Men in Australia may not be aware that Zytiga has been added to the Pharmaceutical Benefits Scheme (PBS) from next month - August. Useful Links Update your Story Subscribe to this E-Letter Past issues of E-Letters Choosing A Treatment YANA Survivor Stories If you want to see the latest stories and updates, choose the Updates link on this page YANA Forum A Strange Place An information guide to prostate cancer

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