I had lots of friends and family members calling and e-mailing me about last weeks prostate cancer news wondering why I am not on active surveillance. The key words here are low risk and I thought I had explained mine was thought to be intermediate risk. I think what prompted everyone to communicate with me about the results of this study was that some of the headlines suggested that men were having "unecessary treatments". The decade long study suggested that men with early stage prostate cancer do just as well over a decade on active surveillance as they do with treatment. An article in todays Daily Mail Good Health Section provides a better discussion. Concluding that: "worryingly, the new study suggests that over ten years, men who have active surveillance are twice as likely to have progressive disease (including cancer spreading to the bones and liver) than men who had surgery or radiotherapy" A retired Doctor stated: I am concerned that it is more about saving money... ... Diagnosing and treating prostate cancer safely and adequately is more expensive than waiting... ... " The article goes on to say that active surveillance should only be for those people who are "genuinely low risk" Read the whole article here: dailymail.co.uk/health/arti...
Des
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Desanthony
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Since my surgery was a few years ago--after several years of watchful waiting--I'm a little out of date with the current situation; but I did understand, and think it's still true, that the unhappy truth is that either choice one makes, waiting or treatment, carries a risk of one kind or another. But I can also well believe the the current push for more watchful waiting could be, at least on the part of some, about saving money! In the end, however, after gathering as much info as reasonably possible, you have to make a decision that YOU are relatively comfortable with. as much as possible.
Money is certainly a part of the push, but we should also understand that there is also good concerns about the quality of life issues that are guaranteed to go along with any type of treatment. Side effects are also a part of the growth of of AS.
The publicity about that study failed to mention that since the U.S. Preventive Task Force recommendations made many men stop getting PSA tests (or decide not to start), more men are being diagnosed with advanced PC. Guys should get tests, but shouldn't insist on aggressive treatment when active surveillance is in order. But it has to be ACTIVE.
The tests should be done regularly and any change investigated. I think men of 45 - maybe even 40 should have a PSA test once a year - pay for it if you have to. Also it would probably be better not to have needle biopsies as these can miss the cancer. The same goes for scans regular Multiparametric scans would at least be the order of the day to try and ensure that the cancer is not growing or moving surely? As is quite obvious from reading other people's stories on this and other forums quite often PSA can be relatively low but PCa can be present - even advanced cancer can be present. Again GP's are trying to avoid too many tests and scans - again due to the cost so it does not fill me with confidence. The problem is that maybe a lot of men - not quite as proactive as those who share our stories on these forums will now be thinking they should not have had their treatment and they may feel they have changed - maybe even ruined their quality of life for nothing. There are also of course, others who would just want even the most drastic treatment to rid themselves of the chance of cancer.
I know men should start earlier if they have a risk factor, like family history or African American. Last I knew, the recommended frequency was every 2 years. As to biopsies, I just went to the Prostate Cancer Research Institute annual conference in LA, which is for patients and providers. One presenter said MRI doubles the detection rate vs. TRUS biopsy (72% to 38%), and no man with a negative MRI turned out to have a Gleason 4 or more.
As to men who push their doctors for a RP or other invasive treatment when it is unnecessary or premature, I think national organizations of urologists & of oncologists need to prepare documents that the doctors can give their patients that explain in the strongest possible terms why it would be unwise to proceed at that point.
You know Neal I can totally understand why someone opts for a radical operation when the word cancer is mentioned. I think most people's first reaction would be "take it all out, get rid of it, preferably straight away". Even Docs have problems getting people to do things they don't want to do and thre are all sorts of psychological problems that would add to the mix of those people not having successful outcomes. We need good communication but communication is a two way thing you can say something to someone but you really can have little idea whether or not they understood exactly what was said. This is especially true when that person is ill, worried and confused (especially where medical jargon is used). Very difficult. All of us here are here because we seek information and explanations - how better to find things out than from people who have first hand experience. So, preaching to the converted here.
You're right. The situation could be improved. What if everyone who's a candidate for active surveillance (& their spouse, partner, etc.) got to see a video with familiar actors explaining what it's all about, & why it's the best option. Perhaps they'd be discussing it with doctors, but it would be scripted, Non-English speakers & English learners would hear it in their native language on headphones. Then they'd get to talk with medical social workers. Of course they could still discuss it with their doctors, but by this time they wouldn't be aggressive or ignorant.
Of course it would help if Doctors took the time to explain clearly at diagnosis with help from cancer nurses. As I said before I was told over the phone. Yes, I live an hours drive away from the hospital but I would rather have been told face to face with the back up of other professionals to explain things there and then who I could contact later for further explanation who had access to my records so that I didn't have to go through everything again and again as I have to when I speak to nurses on helplines. I would have no problem with paying for petrol to get to the hospital and back and spending a whole day there if necessary. It would certainly have made things better for me and I would also have more confidence in the system too. My journey, thus far has left me floundering around looking for information and it is so good to have these websites to bounce our ideas off and let of steam now and again.
I know about the side effects, having suffered from them myself, and people who might chose surgery should certainly know about them ahead of time (I personally know one person who was not warned at all). But I wonder if the financial incentives for one treatment or another (on the part of providers, insurance companies, etc.) are even less often acknowledged.
Unfortunately, it is too often the case that side effects are minimised or not mentioned. Having said that I know many people here who have had major operations and have been given pamphlets before the operation giving a list of side effects who have not read them - saying I don't want to know that. It seems it is up to us to educate ourselves but too many think their Doc will tell them everything and will only give them the best treatment. This is not necessarily so. Your Doc will do the things he knows about and has experience with, what is available in your area or within your healthcare programme/insurance and quite often not mention anything that may be available elsewhere. Sometimes I am told they will also only advise you on the course of action that will also make the most for them - sad but true. I was absolutely amazed and so very pleased to be told by a Doc I was consulting with privately that his treatment would not be the best for me and to go elsewhere and have a different treatment.
I read that article and the conclusions really annoyed me. Call me cynical but I think it is about money -- pushing treatment off into the future. Sometimes the medical establishment comes out with bizarre recommendations, on the order of "you don't need that PSA test" or "flossing your teeth isn't beneficial". Maybe everyone who read that article should spend some time reading these boards and seeing what it is like being diagnosed when you are already stage 4. That's not to say that some un-aggressive prostate cancers are treated too aggressively. Every patient needs to be his own researcher and advocate.
Yes, we do. And guys like us (& women like Charlean & Jackie) have figured that out. But I sure feel sorry for people without the language skills, sophistication, computer access or access to resources that we're lucky to have.
I thought the U.S. Preventive Task Force was trying to save money (fewer PSA tests & biopsies) but being penny-wise & pound-foolish. As cynical & suspicious as I am, I still find the idea that the medical community would conspire to keep guys from being diagnosed until they need expensive treatments & have terminal illnesses to be shocking & revolting. On the other hand, so many of us knew that would happen.
Flossing has no benefits: despite what I just said, I bought that one lock, stock & barrel. I went from flossing nightly (or most nightly) to flossing weekly or less. And I think I'll keep doing that until my next app't, when I find out what my dentist has to say.
As regards the flossing I have changed to the interdental brushes as I have quite a bit of work in my mouth for food to get caught in. However, I have to laugh when my wife comes home and whinges on about her dentist telling her to floss as she does floss and hates doing it!
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