If Breasts Were Testicles......

teachermom4

As I continue to read of more sisters dying from this hideous disease, I can't help but wonder that if the breast cancer epidemic (and it really is an epidemic, don't you think?) was testicular cancer, there would be such an outrage and call to action for a cure. What do we get? Pink and more pink, early detection campaigns etc. We are told to be warriors, to fight like girls, to be strong, all the while marching around having mammograms that don't do sh*t in many cases--what does all that really mean? When I was diagnosed, my internist said that she personally had four patients diagnosed in the last month--the stats are now nearly one in seven women. On these boards, every month a new month of surgery sisters/chemo starters is created--it never ends. Where is the outcry for this to be addressed? If men were having lumpectomies on their testicles, or having them cut off completely, then having them radiated.....I think you see where I am going with this. I'm just so angry (in case you couldn't tell) and I don't know where to direct my anger. Hugs to all of us

MsPharoah

Teachermom4,

    I was just thinking these same thoughts today...wondering why we put up with the paltry advances in finding a cure for  this cancer and others.  My mother died of breast cancer 36 years ago and there is very little new treatments available today than what she had.   Yes, we get more lumpectomies and there are more chemo cocktails, but really??  The number of deaths have not changed! 

   My theory is that breast cancer is a disease that predominantly affects women and we are just too DAMN passive.  We can't be perceived as bitchy, right?  We can't be pushy or bossy??  And being angry is just a sign that we are having our period, right!!!!  When the AIDS epidemic erupted and affected mostly gay men, they were pissed off and didn't take no for an answer.  That type of action gets attention and I strongly believe that militancy was what brought more trial medication to the table.  We have to get pissed off and let our sisters get pissed off and stop raising our daughters to "suck it up".  You are right, if this scourge affected the testicles, there would be a cure, probably decades ago.   Look out for my angry, bossy, pushy, bitchy voice.  

MsP.

 

 

teachermom4

Ms. P. I think you nailed it and I truly believe we need more angry, bossy, pushy, bitchy voices and I have a loud one...I just don't know where to direct it. Funny comment you made about being angry means we have our period! Maybe the world needs to understand we don't have our periods, we don't have our estrogen, we don't have hair, eyelashes, breasts, vaginal moisture...the list is endless!

Meow13

http://www.change.org/petitions/petition-for-briggs-for-cancer-immunotherapy-for-all

Please sign this petition, we need a change stop treating BC like we were in the dark ages.

Maureen813

I'm on board with this this thought process. It's nonsense. I wonder what the treatment protocols and survival rate for prostrate cancer. I'm not minimizing their disease. I just want a damn cure. Prevention isn't lowering these stats. 

teachermom4

Thanks Meow, I signed.

Maureen, you are so right about prevention and yet this is the message that is perpetuated in the media. Early detection = cure. I consider myself highly educated about women's health issues and yet I thought this as well until a close friend was diagnosed with MBC. She's a nurse and the first question she was asked, "Didn't you keep up with your mammograms?" OUCH and UGH. People just don't understand how little we really know about this disease. What is it going to take? Perhaps it is an angry activist campaign like the AIDS campaign, as Ms. P. suggested. All women need to understand because no one is immune

MsPharoah

Meow, I saw your post on another thread and signed the petition.  Thanks for providing that link; seems like a bank of angry women is forming.  GOOD!  I am going to retire in the next few months from a challenging, hard-driving career and have been wondering what to do with my time beyond taking it easy, living healthfully, etc.  It was breast cancer that convinced me to stop and smell the roses really.  So my thoughts today turned to what can I do and I thought....man, there are a lot of cancer treatment centers, infusion centers, breast imaging clinics and maybe I could organize enough angry women to picket near those centers to protest a whole host of things......most notably the myths around breast cancer and the trivialization of this disease.  Maybe a little constant, in your face, reality would get some attention to this scourge. 

 I remember when I went to my infusion center for my first chemo.  Despite it being a large facility with plenty of chairs, couches, etc....there was not one empty seat for me. So I exclaimed loudly to the room, "There is just too much cancer in this world!"  No one in the room disagreed with me.

MsP

Janetanned

I'm angry too!  However, (I might get flamed for this), my informal  research on this topic indicates that more men die from cancer than women male vs female .  It has been known for years that men have a higher mortality rate due to many factors.  Some of these factors include behaviors such as smoking and drinking.  It also seems that physiology is stacked against them as well.  While heart disease seems to take men more frequently than women, I did not realize that cancer was as deadly to men.

In any case, cancer sucks!

MsPharoah

hi Janet,  my anger is fully inflamed against all cancer.  According to the ACS, there are about 9000 cases of testicular cancer a year and about 400 deaths.  If these numbers were as large as breast cancer deaths and cases, would men stand for that level of emasculation? 

MsP

Lindseyc

Sign me up to picket.  Would love to go to my mom's hospital MSKCC and picket.  Would probably get a lot of attention to.

Meow13

Were mad as hell and not going to take anymore

Lojo

I don't mean to start anything or to negate the anger you feel, but I think it's misplaced. I am a feminist through and through, but ... the treatments for prostate cancer are pretty awful too and that happens exclusively to men. (Men can and do get breast cancer, though it is rare). Can't we spend our energy advocating for more basic and applied research rather than somehow blaming the patriarchy for this?

Lojo

I decided to do a quick check of the stats, and the #new cases and # deaths for breast vs prostate cancer are pretty similar. And it looks like breast cancer gets proportionally more funding

http://www.cancer.gov/cancertopics/types/commoncancers

MsPharoah

Lojo, My anger is with the fact that there is no cure.  My anger is not towards men. Love 'em and don't want them to suffer with cancer either, prostate, lung, testicle or any other.   I thought I was making the point that men get $hit done with their anger and activism and that women tend to be too passive.   Getting more proportional funding for breast cancer means that we have power we are not exerting for the good of all.    You did not negate my anger.

MsP

Meow13

My anger is not towards anyone with cancer man or woman. I just get p..d that doctors are so quick to shove the devasting surgery and drugs on us and say "You have to be brave" Here I am feeling great no problems then wham I have 2 small tumors. They pretty much say we have to cut you up radiate the hell out of you and by the way we want you to take this poison for 3 months.  Cancer treatment shouldn't have to bring you to the brink of death! Better treatment already.

After all the odds of killing every damned cancer cell is almost zero. I'd rather they work the problem of the immune system didn't do its job for some reason. The cancer grew undetected.

Let us change the mind set.

sdstarfish

I can't even tell you how many times someone has told me I was 'lucky' because I got the 'good' cancer. people mean well, I guess. The media paints a picture of a pink, curable cancer, and people in general just don't realize the reality. I myself never realized how many younger women died of breast cancer until I had it myself and watched so many friends die.

Lojo

I hear you on the media, and I can't stand the pinkwashing. But,  I guess I just see a lot of progress in the last 30 years, when my mother was diagnosed -- I'm certain I would have had chemo if I'd been diagnosed just 10 years ago. The problem with cancer (breast and otherwise) is that it is 1) really multiple different diseases (and even within breast cancer, it is multiple types, as is just being realized now) -- witness the great progress in developing drugs to treat HER2+ cancer) 2) it is an unfortunate consequence of being a multicellular organism... without going into great detail about the evolutionary history of multicellularity, because cancer cells are basically "self" rather than foreign invaders (like bacteria), it is more challenging for the immune system to identify and deal with these rogue cells. Plus, everytime you add in a selective pressure (chemotherapy drug, antihormonal, radiation, etc), it sets the stage for the evolution of resistance to those treatments (just like overuse of antibiotics can lead to the evolution of resistant bacteria). I'm hopeful that some of the new immunotherapies will make great headway in treatment options, but this is a long road... because of the underlying biology. Remember, we're barely 60 years out from knowing what DNA is and how it codes the information that makes us human.

leggo

I don't want to negate anything either but I personally know three men with testicular cancer, one of whom was a school buddy of my eldest son. He was only 14 at the time....thank gawd it was still encapsulated and he is fine 7 years later. The other two, not so much.

I checked the stats and 1 in 250 men will be diagnosed with testicular cancer in their lifetime. Not that I can say for sure, but I'm guessing that stat held true for bc many years ago also, and that one day testicular cancer will show up as 1 in 9 as well as time goes on. To me, cancer is cancer....it's a mofo of a disease and the only real strides that have been made are in childhood leukemias. Thank gawd for that because I seriously cannot comprehend a child dying of cancer. Call me cynical though, if that's the best they've come up with in the last 40 or 50 years, that's disgusting to me. Somebody better come up with a cure for this bitch because in case the powers that be haven't noticed, people are younger and younger when diagnosed and still dying. If I hear that 5 year stat thing one more time, I swear I'm going to lose it. Tell some poor kid he/she has a chance at being alive at the 5 year mark.....what kind of horsesh*t is that, seriously? Are we all supposed to feel lucky we get five years? Doesn't sound so great when you're a child, 20, 40. Rant over.

MsPharoah

Lojo, I am not satisfied with the progress we have made in the last 30 years.  Progress would be a reduction in the number of annual deaths from breast cancer. We are definitely finding more cancer, and earlier, and fewer women are prescribed chemo but....  Is it really helpful to have your doctor tell you that the current chemos will hurt you more than help you?  Is that progress?  Wouldn't any of us endure chemo if it promised a cure?  When I was waiting for the oncotypedx test, I had mixed feelings about getting a score that said that chemo was of little benefit.   Progress is finding a cure or prevention.  I agree that immunotherapy is the way to go, but if we don't get loud, bossy, bitchy and angry, that could take another 100 years and my beloved daughter doesn't have that kind of time.  

Best, MsP

peacestrength

How do we take action as a group?  Our voices need to be heard....I'm thinking specifically for immunotherapy treatment to be available for breast cancer and for all applicable cancers.  

Maureen813

Mods. Can u help. Where do we start? I also started a thread called 2020. That's when we are suppose to cure cancer. Who do we hold accountable ?

Beesie

Lojo, great posts and good information!

Everyone posting here should read The Emperor of All Maladies, to get an idea of how much we have in fact advanced in our knowledge of cancer over the past 30 to 50 years.  Breast cancer survival rates have improved significantly over the past 30 years, not because of early detection but because of new drugs and improvements in treatments.  Is it good enough?  Of course not, but look at what we've learned recently and think about how that will change treatment and continue to improve survival rates in the future.  Human genome sequencing was completed only in 2007. Individualized medicine is in it's infancy.  Within the breast cancer world, I see significant changes even since my diagnosis 8 1/2 years ago.  The Oncotype test had just become available then, and was only rarely used.  The significance of HER2+ cancers was not well understood then, and Herceptin was only approved for those with advanced breast cancer. 

Go to the National Cancer Institute website and look at their data on funding by type of cancer.  In 2012 (most recent year for which data is available), $602.7 million was spent on breast cancer research, vs. $314.6 million on lung cancer, $265.1 million on prostate cancer and $256.3 million on colorectal cancer.  No other types of cancer come even close to those amounts.

Go to the clinical trial website and see how many trials are underway on breast cancer. 

Yes, we all wish that there was a cure, but it's not for lack of trying.  It's because it's incredibly difficult. It's because breast cancer is a very complicated disease, in that it comes in so many different forms and has so many different causes. I agree that we should cut out all the spending on awareness and focus the funding on curative treatments, but I get frustrated when I see the sort of anger I see here, without the understanding or acknowledgement of what has been achieved and without appreciating that there are thousands of scientists and doctors who devote their lives to finding better treatments and a cure for breast cancer.

As for the issue of this being a woman's cancer and therefore being short-changed because of that, sorry but I don't buy it.  Three generations of the men in my family have had to deal with prostate cancer, and frankly I don't see any difference in the issues they face vs. what we face.  They are waiting for the cure too, or at least better treatments which have less of an impact on their lives. 

I'm angry too that we keep losing women to this terrible disease, and I hate living with the uncertainty of breast cancer hanging over my head.  Channelling the anger into something productive is a good thing, but there is no reason why this should be an 'us' vs. 'them' argument, whether the 'them' is men with men's cancers or the medical research community. 

Meow13

I know it shouldn't be us against them but suffering is too great. I want my health persevered not critically damaged by what I consider barbaric treatments there are bc sisters much younger than I that want a quality and long lifespan I am willing to try new treatments in the interest of advancement.

MsPharoah

Beesie, I don't think that breast cancer is being short-changed because it is a women's cancer.  I think all cancer research is being short changed and that we may very well be neglecting our responsibility to change that by being too passive, as women often are.  

It isn't good enough to be angry and bitchy, but action can start there and if properly focused, make a difference. The argument isn't that if there is a conspiracy against women.....the argument is that the death rate has not been reduced, despite all efforts and that the treatments are dangerous to our health.  Despite the advances in HER2 cancer treatment, there are significant risks in that therapy as there is with all the other treatments...surgery, chemo, radiation, anti-hormonals.   

 Actions speak louder than words.  Beyond doing all the things I can to reduce my personal recurrence risk and being an angry, pushy, bitchy person, here is my action list.

1.  Support financially and politically those research organizations who focus on prevention and immunotherapy. 

2.  Support political candidates who are in favor of quality health care and are willing to pay for it.  (It costs money!)  Help them get elected and hold their feet to the fire.  Use my network to extend their support!

3.  Reach out to local non-profits.  Volunteer to provide child care, transportation, housekeeping services and friendship to cancer patients.  Make sure that my new friends have the garments and over the counter medications that they need through treatment.   Inspire others in my network to become a big sister.

4.  Organize peaceful demonstrations at appropriate locations (with their approval)  to call attention to the growing number of cancer deaths, the dangers of existing therapies, their lack of efficacy,  and the need to publically mega fund immunotherapy research.  Get attention in my community and use it responsibly.

That's just the beginning of my list.

MsP

rettemich

Oh you guys are right up my ally!!!!!

 I think ALL cancer treatment is barbaric. Treating with poison and radiation.

Were is "Bones" from Star Trek when you need him...LOL

I feel, ok may get flamed here, a lot of it has to do with the drug companies. They make billions off of cancer related drugs and Treatment. I read somewhere, wish I could find it, that the biggest money maker for hospitals is chemo. So why on earth would they want to find a cure. They just want to string us along and make us believe, it's for our good and we know best. I am not a pink supporter. I'm a Breast Cancer supporter. The pink stuff to me just makes it look cute and somehow wholesome. And screw the October Breast Cancer Awareness month. Change it to Get the Cure month. I believe there are cures. I think everyone is "aware" of cancer. Ok I have to stop now or I am going to get myself worked up.......happy thoughts ......ummmmmm

Meow13

rettemich, I can't agree more look at this http://www.bloomberg.com/news/2014-08-07/roche-rebuked-by-u-k-on-152-850-breast-cancer-drug.html

I know this is in the UK but don't the realize we want as many BC people as possible to live and have access to advance drugs. Costs always seem to get in the way.

Bicque

HIV-AIDS is on the verge of being a chronic illness, if it isn't already. I recall hearing some thing about that being due,in part, to members of the gay community pursuing education and careers in medical research. Perhaps we should consider doing something similiar by funding post secondary education for students with a vented interest in finding the cure?

Bicque

RaiderGirl

Today I feel really vunerable. I dont think there will ever be a cure. There are too many variables.

Mammograms suck. Self exam is a stupid little appeaser to keep women thinking they have some control. The tumor was over 3cm in size, right at the surface. I didnt feel it at all. Neither could the MD.

Eat healthy, exercise, no drugs, seat belts, blah blah blah, end up with BC and death hiding in the corner just waiting for a chance.

Sorry ladies, there is a huge dark cloud over my head today.

rettemich

Here's an interesting article I found.

Chemo

Meow13

Holy crap when I read the article I know I made the right descision.

I sure as hell hope the exemestane isn't destroying me.

MusicLover

I think part of the frustration that all women have with this disease is that it gets so much attention but not much has changed in years.  All the fluff that surrounds this disease seems to undermine what women are going through.  As for picketing the cancer centers and screening locations, you will get the public's attention a little bit but I don't think it will help that much.  Simply by accident I came across a video which explains the bigger picture right now.  The video is long and some of it may bore you but it is of a group of cancer researchers that are working in immunotherapy (or biological medicine).  In any case, they state that in the past there was very little hope for immunotherapy but it has been showing much promise in recent years specifically for stage IV melanoma and holds a lot of potential for other cancers but the National Cancer Institute which allocates the funds for cancer research is not taking immunotherapy serious enough and therefore, very little funding is going towards it.  This money is our tax dollars.  Hopefully that petition is addressing this issue.  I am going to try and contact Paul Sanderson, the guy who started the petition to see what he says and I'll let you know.  Here is the video:

http://www.milkeninstitute.org/events/gcprogram.taf?function=detail&EvID=4819&eventid=GC14

(On a positive note, private corporations have realized the potential of immunotherapy and therefore, they are finding backers and things are getting done.  At least I hope so.)