Peyronies vs. Breast cancer awareness

[emasculated]

These days women are more effective at complaining and campaigning. The figures on funding for breast cancer don't lie. No.. I posted the videos because I found them curious and have not really any opinion on it. I'm just trying to point out that maybe we could get our act together more when it comes to complaining and maybe learn something from women in this respect.

[Shlomo]

Breast cancer kills. Peyronies, if severe enough, can ruin a man's sex life.  Come on, there's really no comparison.  

[Skjaldborg]

Comparing breast cancer to prostate cancer is problematic too. Breast cancer regularly kills young women whereas prostate cancer typically affects older men and has a much higher long term survival rate. Breast cancer surgeries are also much more invasive; i.e. a double mastectomy is much more visible and scarring than prostate surgery (although radical prostatectomy can cause nerve damage and ED). Funding disparities between the two have nothing to do with sexism or one gender complaining louder than the other; it's based on the perceived deadliness and urgency of curing the disease.

Also worth noting: medical research is not a zero sum game. A dollar for breast cancer research does not necessarily mean a dollar lost to something else. Many discoveries in medicine occur incidentally to the subject at hand. Viagra for instance was discovered when Pfizer was working on a blood pressure and angina pectoris medication.

-Skjald

[emasculated]

By that logic you can't compare any two given diseases. I find it highly questionable to imply something is deadly means automatically it's worse. But that being put aside the bottom line is they got a lot of attention to their cause and a lot of money. I think it has something to do with the male psychology. We are diffident and wait for some accidental discovery which would be the first real progress in over 300 years.

[RoyHobbs]

Um, if one thing kills you but this other thing doesn't the thing that kills you is definitely worse.

[emasculated]

I regard intense long-term suffering, be it psychologically or physically or both as much worse than death. There is an organisation called Dignitas who help severely suffering individuals to die, e.g. lateral sclerosis patients. Because they can't take the indignities of the disease anymore, even though they could theoretically live a long time with it, it's just no life to them. And I highly respect that. I also have a very uncomplicated relationship with death. In fact the thought of death only provokes warm and calm feelings in me. But maybe that's just me. We got a little bit off-topic here.

[ptreyes]

Emasculated, you've made some insulting remarks that really have no place in discussions about funding research for Peyronies.

Your statement that immediate funding would be available if women were to have a similar disease or equivalent is  overly simplistic and ignores the nuances of funding scientific research, public awareness and the inherent complexities of a disease. Breast cancer, for example, was documented very  early on in history (ancient Egypt). And yet, even into the 1800s and mid 1900s, there was very little research (besides doctors experimenting with extremely invasive surgeries), nor public attention about this cancer until the 1970s. It was very shameful for breast cancer survivors prior to this era, when a woman would have to get her one or both breasts removed and go on with life without publicly discussing it, even if it was noticeable to others that her clothing wasn't fitting right or she seemed more flat-chested or lopsided. In the grand scheme of things, public awareness of breast cancer began relatively recently, and only since then has it gathered steam in terms of funding.

Other factors that influence how readily research gets funded are extremely complex. Besides things like mortality, rates of incidence, etc., we need to also consider how easily research on the condition can be done. Are there animal models available to study Peyronies? We can't grow "peyronies cells" in a dish to study and manipulate them because they don't exist (at least, not in the same way that specific cell types of other conditions can grow). The interplay between inflammation and damaged tissue in the penis is not a simple relationship and can very heavily rely on the genetics of the individual and environmental factors. Many conditions that are related to immune function are not easy to study and treat, especially when you have no animal models that recapitulate the condition. I'm not saying that there shouldn't be research on Peyronies (of course, there should be), but you need to recognize the inherent difficulties that are specific to this condition, which may strongly influence how much research is actually capable of being done. Understand that the answer and solution is not always as easy as throwing money at research.

(There is the wrong assumption that immediate funding will produce good solutions in the end. That may be true in many cases, but going back to cancer, the level of funding that cancer research has seen since the 1950s is astronomical compared to research in other diseases. And yet, cancer is still one of the leading causes of death. I can't find the paper right now, but it clearly illustrates that there has barely been a dent in deaths and incidences in many cancers over many decades.)

In essence, you really cannot compare breast cancer and Peyronies. They are inherently very different, with different outcomes, causes, treatments, etc. Saying that women "complain" more and that "idiots" run in fundraisers is insulting and brings in a strange us vs them attitude that is not helpful and it doesn't have a place in this discussion. Videos like the one you linked to ARE HELPFUL with awareness of Peyronies, and I see no problem with their availability so that others may see what the current treatments are. Surgeons that see these techniques may make their own changes to the procedure to improve them in the future, especially when new surgical tools and materials are developed. Education is key.

[james1947]

ptreyes

I would like to clarify two things:
* Emasculated have nothing against breast cancer researches.
* The reasons you are stating for not having enough research for Peyronies are wrong. The main reason, or maybe the only one is that the researchers and they institutions can't see the big money at the end of successful research. Sad truth!!!

I am expressing my private opinion, not as forum moderator
James

[ptreyes]

The reasons you are stating for not having enough research for Peyronies are wrong. The main reason, or maybe the only one is that the researchers and they institutions can't see the big money at the end of successful research. Sad truth!!!

This is a common misconception. Money is not the simple and only motivator, though it can appear to be. Vaccines, for example, cure a disease. Why use so much money do develop a vaccine, when you could instead funnel money into research towards a treatment rather than a cure? A treatment that people continually pay for over a length of time will make a pharmaceutical company a lot more $ than a simple vaccine that is given 1-3 times and then it's done. A good example is HIV. There is a lot of money and attention going towards a vaccine currently, and yet companies make large amounts already on the very effective antivirals already on the market. Money is a great motivator, but do not forget that scientists in biomedical studies also want to help the patient... big pharm is not an academic institution, nor the other way around.

I'm saying that the small amount of research being done for this condition is far more complicated than just money. So what if you had large amounts of money dedicated to Peyronies? You could try to understand it on the cellular level with models. Do we have those? Not from what I've seen. There are human patients, but you can't control for many factors (eg environmental) that might play a role in the disease because everyone is different and lives a different lifestlye. Any human-based procedures have to go through government approval. You need a large sample size for these procedures -- any volunteers readily available immediately that will sign up and put themselves at risk? Maybe not. Again, I'm pointing out that research is not as simple as one would think. Practicalities play a role, in addition to money. Money is not the only limiting factor.

I understand that emasculated is not against breast cancer research. Not sure where you got that idea from. He brings up breast cancer because he wants to advocate awareness and says that complaining more would be effective in increasing awareness and funding. That's fine and logical. Then he goes on to say that idiots run in these charity events for breast cancer? I don't get it... I only bring breast cancer up as an example because it receives a lot of attention and funding.

[emasculated]

@ptreyes: Just to clarify.. I said the thing with charity events not because I'm against the idea, but because these events often take on very ridiculous forms and are done for shady reasons.
The other thing is that Lue himself has stated that he was discouraged from going into Peyronies Disease research because he would never get funding. And he also said that one million dollars would already make a world of difference. And a million is nothing in medical research, it's a joke. That's how bad the situation is for Peyronies Disease. I'm sure he has a lot of approaches and ideas that are simply never going to happen because of lack of money.
And btw. breast cancer also affects men where it is often more aggressive and harder to treat.  

[james1947]

By the way ptreyes, what is your connection to Peyronies?
Are you Peyronies sufferer?
You know us, but we really don't know nothing about you and your motivation for those two posts.

James

[skunkworks]

It's not a misconception at all. Pharmaceutical companies are profit motivated organisations, as they should be.

You are confused as to how a market works. With your HIV example for instance. There are currently companies supplying treatments rather than vaccines. Those companies, and every other one in the field knows that a vaccine would make a huge amount of money, and wipe out the profits for treatments. So the companies supplying treatments want to create and patent a working vaccine first, and so does everyone else. Money.

Alongside that is the HUGE government grants being given to companies to research vaccines for HIV.

You speak of possibly not being able to get hold of participants for studies? Xiaflex had no problems.

The issue is money. For such a small group of sufferers, the funding for research is basically going to have to come from the government, or we'll just see tiny studies on already approved drugs to try to open up an off label market, or self funded studies on devices such as traction.

[ptreyes]

James, someone close to me has Peyronies. We are both frustrated by lack of research and treatment options.

Skunkworks - First, research is not all the same. I'm talking about basic research in Peyronies rather than research in developing treatments directly. And yes, pharm companies are motivated by profit, of course. But where do you think primary and basic research comes from? This kind of research isn't just in pharma circles; in fact most of it isn't. Most of this basic research comes from academia (funded by the government), though there are collaborations with pharmaceutical companies when treatments are being directly developed and tested. My example with HIV highlights this collaborative effort, which is why the government ends up funding a lot of the research. In reality, vaccines are not the best for established pharma if expensive treatments are already in place, which is the case for HIV. Expensive antivirals taken daily for the rest of one's life... that's a lot of money, especially when new patients contract the disease over time. Most of the motivation for HIV vaccine research does come from basic research scientists in academic institutions, sometimes in collaboration with smaller pharm companies who want to make their mark. These scientists don't make the big bucks. Sorry, this is totally off topic from emasculated's original post. I'll just leave it at that.

Seriously... money is an issue, but the only issue? Things are too complex. Higher-profile diseases involving the immune system, like autoimmunity, receive a lot more funding, and where are we? I don't see lupus with a good, novel treatment or cure. My problem is with how little basic research there is on Peyronie's, which might help inform new types of treatments. But it is also a fallacy to think that massive amounts of funding will produce results, that money is the sole limiting factor. It may or it may not produce great treatments with tolerable side effects. Of course, I hope it does, but I also know that research is not so cut and dry, and Peyronie's is a very complicated condition that seems to be very hard to treat because we cannot accurately study it outside the body. Which is why it's still important to keep an open mind about surgical techniques, like the ones emasculated posted, and keep pushing for awareness so that basic research can be funded more adequately. I do think the videos help with awareness, although the OP does not. I also consider thinly-veiled sexist remarks about public campaigns for a completely unrelated disease that isn't even gender-specific to be in poor taste (what does it have to do with Peyronies??). I disagree on all those counts, in addition to money being the only issue. Education is important, even in the form of surgical videos.

Xiaflex ran into fewer hurdles because of its testing as a treatment for Dupuytren's contracture. I'm sure its relative safety from the Dupuytren's trials made people feel a little bit better about signing up for the Peyronie's trial. An experimental surgical technique? Depends on the invasiveness, but you may run into problems there.  

[emasculated]

@ptreyes: I have to reply to your accusation of "sexism" because I sense that's the whole motivation behind your posting here and I dislike the accusation. First of all it is not sex-specific a disease, but it's portrayed as solely female specific by activists who try to get money for breast cancer research. Even though men are affected more rarely.. still kind of sexist, isn't it? Furthermore, your long text of the sad history of breast cancer kind of proves my point that women were very effective at communicating their cause. Otherwise how would you know about it?
I notice in general that the slightest mention of womens disease, issues etc.. yields an immediate reply by someone very well informed about the odds and ends, specifics of history and suffering of women in all it's forms and shapes etc.. E.g. Roy Hobbs with his sob story on Pap smears. Everybody is really _well informed_ aren't they? I wish the same for Peyronies Disease.  

[ptreyes]

I've been lurking on this board, even before creating an account, to find out as much as I can about this condition. I use my resources in my career to access scientific articles to see what sort of information is available, to look at the research progress, etc. I will stick to PubMed. It's very off-putting to see negative comments about people with other conditions like breast cancer or people who support fundraising for said conditions when all I'm trying to do is scour the board for info.

My comments about funding and complications in research are true, having spent time in the realm of biomedical research. There is hope. But if we understand the pitfalls of research, we may be at the very least more efficient in studying the condition (at best, we find the most effective treatment that we can). But the cold, hard facts are that there is too little funding, and even with funding, the future is ambiguous and we don't know for sure what will happen. I've already discussed many examples of this and my issue with levels of funding for basic research on Peyronies (it's just too low). As an aside, all funding info can be found at government sites, like http://clinicaltrials.gov (for the US, anyways), and people can also look at any studies that have been done or are currently ongoing for Peyronies.

There is no need to put down other people with conditions that make life more difficult. I would not call the stories of Peyronie's sufferers "sob stories." They are legitimate experiences to the ones suffering. "Sob story" is belittling and unnecessary. Maybe I was unclear in my first post, but my point was that the road to massive amounts of awareness for breast cancer was a slow one (mid1970s-1980s was the start, after hundreds of years of the disease being known) and that it was not as immediate as you suggest, especially because somehow attaching a female aspect to a disease automatically grants it immediate public attention/$. That is simply not the case.  

First of all it is not sex-specific a disease, but it's portrayed as solely female specific by activists who try to get money for breast cancer research. Even though men are affected more rarely.. still kind of sexist, isn't it?

Yes, breast cancer predominantly affects women. The pink ribbons thing, run/walk events are mostly done by Susan G. Komen and the pink aspect does add to the feminine image of the disease, but they actually have very informative sections on male breast cancer on their site. If it were portrayed as a solely female-specific issue, they do a very good job compiling a hefty amount of information and helpful links and medical studies exclusively for men in their general breast cancer section. They also encourage men to participate in their campaigns.

The 'sad' history of breast cancer has been documented in medical literature, but it's summarized in great detail in the book The Emperor of All Maladies, by Siddhartha Mukherjee. He writes pretty persuasively, especially for an oncologist and a dude.

Everybody is really _well informed_ aren't they? I wish the same for Peyronies Disease.

Umm.... yes. Which is why I've said since my first post that there should be more funding, reasearch and awareness for this condition.

If you are uncomfortable with the accusation of making sexist remarks, okay. Apologies, but we see things differently and my opinion stands. There is definitely an undercurrent of bitterness and resentment in your latest reply, mostly directed at women. Good luck with your battle against this condition, and to others on this board also. I'm moving on from this site.

[james1947]

ptreyes

I'm moving on from this site.

Personally I will not miss you. You have posted 4 posts on this forum with no any help to no one.
And again, I don't understand the reason of your posts, your target. We, Peyronies sufferers are here to help each other and try to find solution to our problems that as someone that don't have Peyronies (wish you will never have) you will never understand.
So good buy and stick to other forum that may need you as preacher or as guide to be enlightened.

James

[skunkworks]

Skunkworks - First, research is not all the same. I'm talking about basic research in Peyronies rather than research in developing treatments directly. And yes, pharm companies are motivated by profit, of course. But where do you think primary and basic research comes from? This kind of research isn't just in pharma circles; in fact most of it isn't. Most of this basic research comes from academia (funded by the government), though there are collaborations with pharmaceutical companies when treatments are being directly developed and tested. My example with HIV highlights this collaborative effort, which is why the government ends up funding a lot of the research. In reality, vaccines are not the best for established pharma if expensive treatments are already in place, which is the case for HIV. Expensive antivirals taken daily for the rest of one's life... that's a lot of money, especially when new patients contract the disease over time. Most of the motivation for HIV vaccine research does come from basic research scientists in academic institutions, sometimes in collaboration with smaller pharm companies who want to make their mark. These scientists don't make the big bucks. Sorry, this is totally off topic from emasculated's original post. I'll just leave it at that.

You missed the point so completely that I wonder if you did on purpose. Free markets are an environment based on a sort of evolution. If there is a better way to do something, someone will find it sooner or later, and profit from it. Whichever company finds a vaccine will profit from it greatly, despite it knocking out pharma profits in daily antiviral treatments, because it will be a better solution for the user. Whoever gets there first makes the profit. You seem under the impression that pharma companies are all one company, as opposed to the reality of the situation which is that they are in very fierce competition with each other. The fact that HIV vaccines are being aggressively pursued by multiple pharma companies (notable example being Merck) proves you wrong.

[liber]

ptreyes put forward many valid points. emas (i will not address his whole name) is the one spreading negativity, hence james i suggest you read the thread again and understand the content.

[james1947]

liber

Yes, some of emasculated posts are negative, I understand the content of his posts and answering accordingly.
We will not censor his posts in any case, he is a member like you and me and have the right to express himself.
But ptreyes posts started from making emasculated sexist showing too much sensitivity to the subject and continue an one way argument trying to impose his (I think her) point of view like he is the only "en-lighted" person on this forum.
Also not answering to other people arguments, just contradicts them and continue with his own, trying to teach us how to manage this forum.
My question is: From where he is coming and where he/she is going, why he registered to the forum as he don't have Peyronies and his connection to Peyronies is via a "friend that have".
Personally I don't think that emasculated post was sexist!!!
Just ptreyes made an issue from emasculated post, this is why this topic become important. Otherwise, this topic was just disappearing in the see of the other topics.

James

[liber]

james that is a lot of words, after reading them they make no sense to me (i'm confused). your notion of ptreyes sex is irrelevant to the debate that he/it/ she put forward.

[james1947]

It is just normal you don't understand me liber, English is not my mother language.
Maybe if you will speak some 10 languages you will understand me.
In any case is not bothering me too much if someone don't understand my posts, is natural as again, English is not my mother language and I never learned English.
I can't concentrate more in this subject as I have to take care of spammers attacking the forum right now

James  

[liber]

so a person (nameless) bleating on about suicide, dignitas, the warm comfort of death and total self indulgent negativity goes ploughing on, ptreyes you said we don't want you here or words to that effect, ridiculous.

ptreyes put forward a valid arguement.  

[LWillisjr]

I've read the thread and understand some valid points are being made. I find it interesting that a topic on breast cancer has triggered such a heated discussion. I even had to split this off from another thread that was started on a completely different topic. Let's just keep the discussion civil and respect each other.

[MIKEHAWK]

Breast Cancer Stem Cell Treatment - YouTube

New advances in the treatment of cancer through stem cell collection and storage for families. - YouTube

Tons of people are actually being cured of breast cancer through Stem Cell, the only problem is that it's twice the price of chemotherapy. This is a safe way of a curing cancer compare to chemotherapy. Although i have yet to hear news of a safe way to cure lung cancer and colon/prostate cancer which is numbered 1 and 2 when it comes to people who have this in the population world wide.

So it's not fair to say that breast cancer is harder to treat or that it is more dangerous to cure. it really comes to how much money your willing to invest or when will stem cell treatment become cheaper through development of technology. The donations going to Stem Cell research could have done a lot more for breast cancer then simply donating to breast cancer. Stem cell injection to the breast is a NON EVASIVE way of curing Breast Cancer. Colon cancer and prostate is still HACK and SLASH method combined with radiation with no alternatives.

So in the end i would not say it's fair to pick breast cancer over Lung cancer and colon/prostate cancer.

I still think it's kind of odd to compare breast cancer to Peyronies but if you compare cancer to cancer, feminists did manage to make breast cancer the top priority over everything else. if the money was donated to stem cell to make a cheaper more efficient way of collecting stem cell, it could easily replace Chemotherapy and surgery.

Although depending on the type of CANCER, STEM CELL therapy is equal to the cost of CHEMOTHERAPY, it's just not legal in the USA because of the FDA. There are celebrities in America that have been cured of Breast Cancer using Stem Cell.

America is super slow when it comes to stem cell research but other countries are already using these cures.

[MIKEHAWK]

but if you want to compare tissue regeneration than here you go.

Suzanne Somers' Stem Cell Breast Reconstruction Surgery - Episode 1 - YouTube

Celebrities regrowing her breast through stem cell therapy.


I don't know what's more important, Reconstructing your reproductive organ or a woman's chest?

Logically i don't think that's fair but i can still appreciate that it's helping someone.

Breast Enlargement using Stem Cells and Fat Transfer? - YouTube


There might be stem cell injections into the penile tissue but the difference is that fat stem cells seem to having a staying power in breast tissue. The problem with injecting stem cell into the penis, it doesn't have the same staying power.