Breast cancer anger towards testicular cancer?

[phlogistic]

Hey, what did us testicular cancer folk ever do to breast cancer folk?

http://www.breastcancernews.brighterplanet.org/breast-cancer-survivors/its-nuts-that-the-breast-cancer-patient-protection-act

[Already Bald]

Wow. This is a pretty shocking clip. I get her point, but her facts are wrong.
I was thinking about sending her a gentle note, but I thought it might be more effective if we all comment on this thread, then send her the link.
Thoughts?

My I/O was at a crummy out-patient facility, I was home throwing up in two hours.
Sacred half to death, with only an on-call doc to talk to who knew nothing about me.
And that was only a 2 minute phone call, some post treatment care.
Terrible experience.

As for fighting cancer, my world stopped when Majbritt was diagnosed with sarcoma. I would go to the end of the world for a cure for all cancer.
Joe

[Jay68442]

Sorry but I had to reply. I guess I will have to wait and see of she approves my message and displayes it.

In case she doesn't here is what I wrote. Nothing bad. :)

I understand the reason behind your video but your comparison to testicular cancer is all wrong.

First, a man about to lose his “nuts” as you put it is NOT “in like Flynn”. Regardless of gender or type of cancer for that matter, when newly diagnosed you are as terrified as everyone else.

Second, your fact that men get to stay in the hospital 2-4 days is wrong as well. Many go home the same day, most within as little as 24 hours.

I take offense to that fact that through your message you belittle testicular cancer and make it sound as if a man diagnosed with testicular cancer is in some way better off than a women diagnosed with breast cancer. We are all scared; we all feel the pain and we all deal with the uncertainty. Going forward please try to keep that in mind. When I work hard to raise money to fight cancer it goes toward all cancers not just testicular.

[Smartie]

I guess she's just angry. I think sometimes when people are angry that they have the disease they don't know who or what to direct their anger at as it is no-one's fault and the cause is unknown, so the anger can be redirected towards government, the medical profession or even other patients.

Of course she's just plain wrong in terms of her facts, and her words belittle the suffering that TC patients go through. But she's angry and scared. Let's hope she finds some peace.

[Paul54]

Mary says in the video that she was recording the message in April 2008. It's difficult to tell if the comment posts are current since they all seem to have the same date. I really don't think she is angry about what she sees as better treatment for TC. I think she is just angry about substandard care she has received for breast cancer, and I agree she has valid issues. I hope and pray she is surviving and thriving.

[starjayroman]

She has valid issues. The problem is the way she is representing them. It makes me angry because men die from cancer as well and it doesn't make a difference how many people are affected by both of them. Cancer is cancer. Whatever kind you get changes your life and those around you drastically. She is trying to make a point but she is using the wrong way of going about it.:(

[Kiwi]

Health Care can always be better but there is not an unlimited amount of money that can be placed into it.

Seeing stuff like this and also posts here it makes me realize that the Health Care system in Australia is really good and accessible to all, weather you have insurance or not, (those without Private Insurance will be seen but it will take a little longer than those with insurance .)

I often think about the awareness campaigns and funding that go towards certain ‘PC’ cancers with fairly little awareness promotion towards TC. Yip, there is the thought that it has a ‘low’ incidence rate, but a simple reminder to check your nuts would have to increase the location of TC at stage one.

The UK does appear to have some awareness campaigns when you search around the Web (the guys in the UK May be able to comment on how often they are around).

This UK TV Show clip really hits the spot for me http://www.channel4embarrassingillnesses.com/video/how-to-check-yourself/how-to-check-your-testicles/ I would love to see a lot more of this through the education system as part of Health and Sex Education programs, as well as in the general public eye.

Cheers

Kiwi :) :)

[dadmo]

WOW is she way off base.

[TCLEFT]

The comments on page 3 on Youtube itself just about took me out at the knees. I sat in that chemo cafe and saw only one thing. I saw one group of people fighting one common enemy. I looked deep into many of those people's eyes. I'd like to think they thought the same thing as I, "God I hope he/she makes it".
Much Love,
Mark

[starjayroman]

Health Care can always be better but there is not an unlimited amount of money that can be placed into it.

Seeing stuff like this and also posts here it makes me realize that the Health Care system in Australia is really good and accessible to all, weather you have insurance or not, (those without Private Insurance will be seen but it will take a little longer than those with insurance .) Kiwi


I just have to say that we live in Minnesota, USA. Jay had no insurance when he went to the doctor. In fact, that is why he did not want to go. He was seen by a primary doctor, radiologist, urologist, oncologist, he had ctscans, labwork done, an orchiectomy done, chemo started, all without any insurance and all without a job. They all told him not too worry. It was there job to worry and the bills would be taken care of one way or another. So I always hear about Americans having no access to healthcare yet I haven't found that to be true. When i thought I was having a heartattack I went to emergency and they took care of me. I had no insurance yet they took care of the bill too. Now, mind you I do have a 300.00 bill for getting ear wax taken out of my ear but at this point Jays medical bills are more important and the state and federal gov is taking care of them.

[Aegletes]

I've posted a comment on the referenced web site and hope it doesn't get deleted. If there's one thing I've learned through this experience is that we all need to have compassion for our fellow humans. We don't make any progress in this fight by sowing division. I'm saddened that the author of that video has forgotten this fundamental fact. And I'm disgusted that the author makes false statement with respect to testicular cancer. TC is little known and understand in the larger community to begin with so it's maddening when someone actual detracts from this battle by spreading misinformation.

[ukboyuk]

I am amazed by her comments. In my opinion there is an implicit bias against healthcare for men and for healthcare for women.

If women are worried about something there is always a kind arm around the shoulder. I personally reckon that men are far more often challenged by doctors. Here is an excellent article on this by a controversial UK doctor who I agree with on many issues:

Older Men Are Politically Expendable (http://www.vernoncoleman.com/oldermen.htm)

As Nick says, she is just angry.

[Aegletes]

I noticed this morning that my comment on her website, a comment in which I sympathized with her as regards drive-by mastectomies but rejected her false statements concerning TC, was removed. Sadly, her disinformation remains on her site seemingly unchallenged. This is a big reminder for all of us of just how important it is that we not stop simply at raising money for treatment and research. We each need continue to educate, advocate and combat ignorance and misinformation. Sadly, it's an ongoing fight.

[phlogistic]

I noticed this morning that my comment on her website, a comment in which I sympathized with her as regards drive-by mastectomies but rejected her false statements concerning TC, was removed. Sadly, her disinformation remains on her site seemingly unchallenged.

Same here...I tried leaving a polite comment that the information a commentor gives about relapsed TC is incorrect.

[boyce]

I totally agree that Congress needs to do MUCH more to assist all cancer survivors and patients. When I lost a nut to testicular cancer I was out of the hospital in 4 Hours!

The bill you reference is incredibly important! As a survivor of chemotherapy, losing the nut and a Retroperitineal Lymph Node Dissection I empathize with your and other breast cancer patients' ordeals.

Please know that all of us in the survivorship community support your efforts. This is not a man/woman issue any more than it is a rich/poor, black/white or gay/straight issue. It is a basic human issue.

There are many men like me who support your efforts and want to work together to improve treatment and care for all who are impacted by this awul disease!

She comes off as a manhater, and I hope that isn't true! We ALL need better access and care.

[ukboyuk]

Well I and others managed to coax some responses out of her on Youtube:

http://www.youtube.com/comment_servlet?all_comments&v=SsAeHZoUofc

[TCLEFT]

I get two very distinct impressions from her. One is that she is steadfast in her original intent on getting the message out about the condition of healthcare for the Breast Cancer patient. I admire her tenacity on this point. The other is that she sees no harm in using our condition as a comparisson. Unfortunately, most focus is on the video rather than reading corrections (quick blurb addressing Scott's comment), and I get the impression many viewing her video feel that TC is a walk in the park, especially given the cure rate. I feel she's unknowingly hurting us on allot of levels. I don't know what to say that would get this accross. Maybe one of our lady Co-Warriors might be able to explain it to her. Just a thought.
Much Love,
Mark

[Maryann]

Wow.

When I watched her Utube, I saw a couple of things. One is that she is a kid - I would estimate 25 at the most. She was a 3 x survivor. Poor kid.

The other is that she is incredibly angry. Good for her. The anger may be what she needs to keep going. It would be so much easier to relax and give in.

She is definitely misinformed about TC and orchiectomies.

I think she is subscribing to the old story "if men had to have babies then the population would be zero" ......

As a health care worker I can tell you (and I don't need to tell anyone HERE this) -
women may have "female" problems early in life (menses, childbirth, breast issues) but men get it later on tenfold with prostate problems. (And I don't mean cancer - just plain old benign prostatic hyperplasia requiring catherization etc). Ouch.

It should not come down to women vs. men. We are all human beings and we should care about one another regardless of gender.

I feel sorry for her, I am sure that she doesn't wish ill upon men or TC patients...it was just a very bad and incorrect example that she somehow stumbled upon. I'll forgive her for her mistake and wish her well in her own battle and recovery.

The US heath system does need a major overhaul and we do need to insure that everyone gets the best possible healthcare out there.

Maryann

[MRMRSU]

I feel sorry for her, I am sure that she doesn't wish ill upon men or TC patients...it was just a very bad and incorrect example that she somehow stumbled upon. I'll forgive her for her mistake and wish her well in her own battle and recovery.
I completely agree with you on this Maryann.

My comments to Ms. Carpenter...not sure if it will get removed from her site, but I thought I would try...

Dear Mary: As a young adult who has seen other women and friends much too young like yourself battle breast cancer, I am struck by your passion and your commitment. I am truly sorry to see that you have had to face this demon three times, and I support you as a sister in the on-going fight to make our voices heard by congressional leaders. I did also want to share with you that I was brought to tears in seeing this youtube video because I'm the wife and caregiver of a man who was diagnosed two years ago at the age of 30 with testicular cancer. Their fight is every bit as empassioned and every bit as painful as any other cancer patient. I know that you were trying to make a point, but I was saddened to see they way in which you chose to do so. I can only hope that perhaps you might want to contact me via email so that I can share some information with you about the methods and means involved in an orchiectomy (testicle removal). My husband was sent home in a matter of hours after losing his left testicle. Please know how much we sympathize with your cause and hope that we can learn much from each other. Fight on Mary!

[Karen]

Well stated, Maria!!!!

[Smartie]

I too completely agree with MaryAnn.

To me it seems she is a young woman who is fighting to come to terms with something that none of us ever expected to have to deal with. She's angry and scared, but she doesn't really mean any disrespect to TC patients. I personally don't really take offence at her comments as it's clear that they come from a deep sense of fear and anger. Also, she's accepted that she has her facts wrong and has written a note to that effect on her YouTube site.

To put it bluntly, I think she has plenty to deal with in her life, and could do without a group of angry TC patients criticising her. I think it's time to let this drop now.