Interesting Article I Just Read

In the interest of covering all things breast oriented, I’m not sure if others go through this as well so I am sharing this article too. I have been through the trials and tribulations of having Fibrocystic Breast Disease as well so I really do understand this disease as well. It can be scary and frustrating as the GP’s tend to tell you ‘there is nothing you can do about it.’ I don’t and never will believe that about my health. I hope this helps even just one person 🙂 What are you thoughts on it?

http://thisissogood.wordpress.com/2012/02/10/fibrocystic-breast-disease-how-iodine-supplementation-saved-me-from-unnecessary-surgery-plus-a-book-review-iodine-why-you-need-it-and-why-you-cant-live-without-it-by-david-brownstein-md/

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Breast Cancer

Photo on 2010-04-03 at 17.36

Yup, it’s a powerful combination these two words. When put together, it seems like it is powerful enough to bring us to tears, anger, frustration, thoughts of our mortality and so much more. I remember when my sister first got it. It was different though, for us, as we were always told from a very young age to self-examine over and over that it wasn’t really a matter of if you find a lump, it was almost like ‘when you find a lump.’

I’m not sure what process each person has had to go through with their journey but I thought it might be important to speak about mine so there is a better understanding of where I am coming from as far as breast cancer goes. You see, my aunt and grandmother on my fathers side both had breast cancer and died from it. They had it back when the technology wasn’t very developed in breast cancer. They both died at very young ages and I believe it really affected my father more than we could know.

So, as we approached the puberty stage it was coming from my father the message of checking for lumps. It was almost a mantra preached to us. I’m not unhappy with it because he made us aware. I think the only thing that it did that may have been a bit unwanted was it made me paranoid. I was waiting to find the lumps wondering when my number was going to come up. Then when my oldest sister got it we were like, oh, you got it first, let’s see what happens.

Interestingly enough none of us were tested for the genetic pre-disposition to having it. You know the BRCA1 & BRCA2 genes which are precursors for saying you have inherited the likelihood of having breast cancer. Many years later from my sisters diagnosis and, well basically, her journey i asked her about the genetic test but she said she had not gotten it done since it didn’t seem to matter, she had it!

I get it, really, I do. I would not have been bothered with it either. I guess my motivation to get the test was to see if I should wait for it, or just keep on living. This presented an interesting issue as well, just keep on living? A friend of mine asked me, ‘what does that even mean?’ Yeah, what did it mean? It made me self analyse all of it and me for that matter. Why wouldn’t I start living anyway? What was stopping me? This evolved into a lot of self-work. This work in turn became the basis of how I helped my mother get through the first part of her breast cancer battle.

I had spent many years pleading with my military doctor to put me in for the genetic test but it wasn’t until I started this self work on living that I began to transform his outlook on it. Sometimes, with the military, you gotta spell it out in money terms. I began to look at myself as a trained soldier who could basically be taken out of work due to this disease and when I spelled the cost out to him of that, compared to the cost of the test, he put me in for testing.The test came back negative for both genes. I was relieved and happy to scrap the plan that I had created for my doctor had it come back positive. My other sister said to me, ‘at least now you can stop saying ‘when’ it happens and more ‘if’ it happens,’ This was an odd statement as it seemed that she was having the same inner conflict that I had dealt with.

It was time to address that with her. I created a bit of a workbook of exercises to help figure out where that was coming from and how to ‘burn’ it away. (A term you will come to know when my book comes out, because there is an exercise that helps with that) You’ll be happy to know that I have written a book and it is in editing stages and I am looking for it to come out the middle of June. I go over several different things that help you reconnect to your body and to really honour yourself in the process.

It’s been an interesting weekend of evaluation and has been a bit overwhelming because in being questioned by my mentor it seems the reason I am feeling I am not doing anything is because I have done all of my tasks that were assigned me and need more tasks! I am now focusing on the workbook for my seminar in June. I hope you can make it to London for my first two day workshop where we will address the things that come along with having breast cancer and the internal things we need to work on. Don’t worry, this seminar won’t have you crying all weekend, it will have you feeling really good about taking proactive steps towards your path of choice. After all, we really have to stick with the saying, take what fits and leave the rest. 🙂

Como Say What?

Yeah, I did it, I went and ruined some Spanish words but it makes a point and it also is so like me to say stuff like that. I tend to say it when I am like wtf? and huh? at the same time. Does that even make sense? Well, it seems to for me.

Sometimes, when I listen to a client’s issues after having gone through such an extraordinary thing as having a double mastectomy, I say como say what? Not because I don’t understand the things they are going through but because I can’t believe people actually said the shit they said to them when they did!

OK, backtracking here….what the heck are you talking about Lisa? Like, for instance, the lady who was told that she just doesn’t understand what her husband is going through in this journey of surviving breast cancer. That is where ‘como say what?’ comes in. I mean, do people really hear themselves when they say this shit? If a man has testicular cancer is it right to say to him ‘hey, I know you have just lost one of your testicles but you gotta think of how your wife feels.’ Really? Would you say that? I think not!

So, this is just my two cents on the really swell person who said that to our survivor and actually didn’t think about it. Honestly, let’s have a heart and realise that the things a woman goes thru while surviving breast cancer are far deeper than you could ever imagine and the fact that they are here another day, smiling and dealing with life means they are winning with grace! Let them have some peace and not harass them by telling them something like ‘but just think what the other person is going through!’ I will shake my head if I hear that ever being said to someone in the clinic when I am there.
I am thinking of you my survivor friends, because you are awesome and winning with grace!

News About Ovarian Cancer

Widespread Flaws Found in Ovarian Cancer Treatment

By 

Most women with ovarian cancer receive inadequate care and miss out on treatments that could add a year or more to their lives, a new study has found.

The results highlight what many experts say is a neglected problem: widespread, persistent flaws in the care of women with this disease, which kills 15,000 a year in the United States. About 22,000 new cases are diagnosed annually, most of them discovered at an advanced stage and needing aggressive treatment. Worldwide, there are about 200,000 new cases a year.

Cancer specialists around the country say the main reason for the poor care is that most women are treated by doctors and hospitals that see few cases of the disease and lack expertise in the complex surgery and chemotherapy that can prolong life.

“If we could just make sure that women get to the people who are trained to take care of them, the impact would be much greater than that of any new chemotherapy drug or biological agent,” said Dr. Robert E. Bristow, the director of gynecologic oncology at the University of California, Irvine, and lead author of the new study presented on Monday at a meeting of the Society of Gynecologic Oncology in Los Angeles.

The study found that only a little more than a third of patients received the best possible care, confirming a troubling pattern that other studies have also documented.

Karen Mason, 61, from Pitman, N.J., had been a nurse for 28 years when she was found to have ovarian cancer in 2001. She scheduled surgery with her gynecologist, who was not a cancer surgeon.

But her sisters would not allow it. They had gone on the Internet, and became convinced — rightly, according to experts — that she should go to a major cancer center.

“They took the reins out of my hands,” Ms. Mason said.

She wound up having a long, complicated and successful operation performed by a gynecologic oncologist, which she does not believe her gynecologist could have done.

Dr. Barbara A. Goff, a professor of gynecologic oncology at the University of Washington, in Seattle, who was not part of Dr. Bristow’s study, said the problem with ovarian cancer care was clear: “We’re not making the most use of things that we know work well.”

What works best is meticulous, extensive surgery and aggressive chemotherapy. Ovarian cancer spreads inside the abdomen, and studies have shown that survival improves if women have surgery called debulking, to remove all visible traces of the disease. Taking out as much cancer as possible gives the drugs a better chance of killing whatever is left. The surgery may involve removing the spleen, parts of the intestine, stomach and other organs, as well as the reproductive system.

The operations should be done by gynecologic oncologists, said Dr. Deborah Armstrong of Johns Hopkins University, who is not a surgeon. But many women, she said, are operated on by general surgeons and gynecologists.

Some women prefer the obstetricians who delivered their children. Many are desperate to start treatment and think there is no time to find a specialist. Some do not know that gynecologic oncologists exist. Some inexperienced doctors may find the cancer unexpectedly during surgery and try to remove it, but not do a thorough job.

“If this was breast cancer, and two-thirds of women were not getting guideline care that improves survival, you know what kind of hue and cry there would be,” said Dr. Armstrong, who was not involved in the study. But in ovarian cancer, she said: “There’s not as big an advocacy community. The women are a little older, sicker and less prone to be activists.”

One patient advocacy group, the Ovarian Cancer National Alliance, ranks the availability of a gynecologic oncologist as one of its criteria in comparing the quality of care among states.

Surgeons who lack expertise in ovarian cancer should refer women to specialists if the women are suspected to have the disease, but often do not, Dr. Goff said.

Dr. Bristow’s research, which has been submitted to a medical journal but not yet published, was based on the medical records of 13,321 women with ovarian cancer diagnosed from 1999 to 2006 in California. They had the most common type, called epithelial. Only 37 percent received treatment that adhered to guidelines set by the National Comprehensive Cancer Network, an alliance of 21 major cancer centers with expert panels that analyze research and recommend treatments. The guidelines for ovarian cancer specify surgical procedures and chemotherapy, depending on the stage of the disease.

Surgeons who operated on 10 or more women a year for ovarian cancer, and hospitals that treated 20 or more a year, were more likely to stick to the guidelines, the study found. And their patients lived longer. Among women with advanced disease — the stage at which ovarian cancer is usually first found — 35 percent survived at least five years if their care met the guidelines, compared with 25 percent of those whose care fell short.

But most of the women in the study, more than 80 percent, were treated by what the researchers called “low-volume” providers — surgeons with 10 or fewer cases a year, and hospitals with 20 or fewer.

Dr. Bristow said women should ask surgeons how often they operate on women with ovarian cancer and how often they achieve complete debulking. But he also acknowledged that many patients hesitate to ask for fear of offending the doctor who may operate on them.

Ovarian cancer has unusual traits that make it more treatable than some other cancers. It is less likely to spread through the bloodstream and lymph system to distant organs like the lungs and brain. The tumors do spread, but usually within the abdomen and pelvis, where they tend to coat other organs but not eat into them and destroy them, said Dr. Matthew A. Powell, a gynecologic oncologist and associate professor at Washington University School of Medicine in St. Louis.

And most ovarian cancers are extremely sensitive to chemotherapy, experts said.

In 2006, a study was published that many doctors thought would change the field forever. It compared standard intravenous chemotherapy with a regimen that pumped the drugs directly into the abdomen. The test regimen was highly toxic, and not all patients could tolerate it. But median survival on it was 65.6 months, compared with 49.7 months on the standard treatment — a survival difference of 15.9 months.

The gain was huge, almost unheard of. New cancer drugs are often approved if they buy patients just a few months. The test treatment — called intraperitoneal, or IP therapy — did not even use new drugs. It just gave the old ones in a different way. Several previous studies had had similar findings for IP therapy, but the 2006 study, led by Dr. Armstrong, had the most definitive results.

The National Cancer Institute took a rare step, one it reserves for major advances. It issued a “clinical announcement” to encourage doctors to use the IP treatment, and to urge patients to ask about it. Cancer specialists predicted that the announcement would lead to widespread changes in treatment. Expert guidelines said it should be offered to every patient considered strong enough to endure it.

Seven years later, Dr. Armstrong and other physicians said, IP therapy still has not caught on.

Part of the reason may involve money, Dr. Armstrong said. With IP chemotherapy, patients also need a lot of intravenous fluids, which means unusually long treatment sessions. Oncologists are paid for treatments, not for time, so for those in private practice, long sessions can eat away at income.

“You don’t make a lot of money with somebody in the chair getting IV fluids,” Dr. Armstrong said. “Chair time is money. I’m being a cynic here, but I think that is part of the issue.”

Dr. Goff said: “Where I live, in the Pacific Northwest, IP chemotherapy is pretty much only being done in the major medical centers, and by very few private-practice oncologists. Many say it’s too difficult, and they don’t even offer it to patients, which I think is unethical.”

Ms. Mason had six hours of surgery at the Fox Chase Cancer Center in Philadelphia, with a gynecologic oncologist. The cancer had spread to lymph nodes, and was Stage 3. The surgeon removed her ovaries, fallopian tubes, various lymph nodes, uterus, cervix and omentum (part of the tissue that lines the inside of the abdomen).

“Ovarian cancer looks like Rice Krispies all over the place,” Ms. Mason said. “She spent most of the time picking out each little visible Rice Krispy, and left nothing behind that she could see with her naked eye.”

Then, Ms. Mason had chemotherapy (not IP, because it was not being done at the time). The disease has not recurred. Had she stuck with the first doctor, she believes, “I would be gone.”

“I feel so strongly about letting women know that you need to get to a center of excellence,” Ms. Mason said. “It’s shocking to think it’s still not happening.”

http://www.nytimes.com/2013/03/12/health/ovarian-cancer-study-finds-widespread-flaws-in-treatment.html?pagewanted=all&_r=1&

I Just Had To Share This With You!

It’s not all the time that I find a blog that really speaks to me but I have. I read this input from The Sarcastic Boob blog and was screaming! I mean, did you even realise how many women are actually going through this? You would be surprised.

Please read this and let me know your thoughts, all references to the original blog site are listed at the end, feel free to subscribe to the blog as it has an awesome value in their content! Enjoy and feel free to scream out at the jerks who make you want to scream out because of their damn ‘suck it up’ behaviour!

The Downside of Virtual Interaction

Posted by Scorchy March 24, 2103 – http://thesarcasticboob.com/2013/03/24/the-downside-of-virtual-interaction/comment-page-1/#comment-3392

Since my breast cancer diagnosis and–48 hours later–the creation of this blog, I have sung the praises of social media.  As my readership grew and my Twitter numbers blossomed, virtual roots that were planted started to flourish in a garden of unending support.

There are hundreds of organizations and affiliates that provide some level of support.   For me, in the very first weeks of this experience I learned very useful information from Beyond the Shock and the (rather quiet) discussion board of theNational Breast Cancer Foundation.  Not only was it valuable to me in learning about the disease writ large, but also in reaching out to people I never knew for help.  I remember my first question: “Do I ever wrap my head around this?”  It also piqued my interest in this whole pink movement when someone signed their good wishes “Your sister in pink.”  Warm intentions aside, I realized there was a pink movement and it could be, well, a little misguided.

The cool thing about social media is that you have people of all stripes that unite around a common cause.  I am connected to, and with, advocates, patients, providers, and caregivers who all became conduits of knowledge, support, and empathy.  But like anything else, you need to have the ability to absorb the best and filter out the bullshit.  And bullshit is what I came across not twenty-four hours ago as the result of a question posed to the public on NBCF’s Q&A discussion board.  These questions are tweeted out via @breastcancerQA and occasionally one piques my interest enough to click and see what’s going on.  While sipping my tea and browsing through my Twitter feed the other night I saw this:

Capture

I immediately felt a pang of identity for I reflected back to the times my father refused to support my mother when she had problems at her job.  She believed that she was facing age discrimination and  he patently didn’t want to hear it and told her to suck it up.  (I had a few words to say about that at the time, but I digress.)  Point is, I needed to click on that and see what was going on.  This was an emotionally abused woman crying out for help.  I didn’t know what I could add to that conversation, but I made the mistake of going in.

My faith and hope in womankind was dashed when I read one of the first responses.

Capture“It might be harder for him than you.”

I want you to ponder that answer to a woman who has identified herself as one with stage iv disease.  Roll them around in your head.  Digest them.  And now read it again.

It might be harder for him than you.”

We talk about physicians who are dismissive, but rarely do we delve into the sad fact that partners and other women WITH BREAST CANCER can be foolishly dismissive in their words and actions.  First of all, said husband is an asshole.  He was probably an asshole before his wife got cancer.  And he’s an asshole now.  There’s probably little that can be done for a situation like this and, obviously, we  know nothing when all is said and done.  But honestly, why should a woman have to deal with that while they’re either vacationing in or moving permanently to Cancertown?

I think far too many women suffer in this space of emotional deprivation and we know all too little about it.  It’s not like there are shelters for women who have breast cancer and aren’t being supported in the way they need to be.   Many women have no access to the web in order to gain support.  Many of them may know nothing about blogs or Twitter.  They don’t have access to or cannot find a support group.  They are essentially alone–not unlike women years ago when breast cancer was a “condition” of which you did not speak and men complained that their wives were less than the woman they married.  The NBCF discussion boards are notorious (in my view) for the “my prayers are with you” crowd, so there wasn’t much to offer in the way of advice aside from “you need to talk to him” or “seek counseling” or “I’m praying for you”  or “men are like this.”  (I’m afraid my answer wasn’t helpful, incensed as I was by the words of Ms. X.)  But that this woman reached out is enough to break my heart.

One woman commented with a central truth.

Capture

What can we do, really?  My hope is that in reaching out this woman who is faced with such cold uncertainty and lives with a dismissive partner’s “tough love” will find the same valuable and indispensable virtual support that so many of us have found.  Thing is, it won’t erase or even take the place of someone so central to your life who is not supportive.  But perhaps it may provide some degree of help and solace.

According to the identifying information posted along with Ms. X’s vacuous advice, was information identifying her as having stage iiic cancer.  My reply was more “I-can’t-believe-you-just-said-that” disbelief.

Ms. X’s egregious comment both dismissed the emotionally abusive behavior that was/is affecting this woman in a profound way by chalking it up to the ol’ patriarchal “that’s how most guys handle things,” but what is most egregious is how she’s marginalized the gravity of this woman’s diagnosis.  Was it intentional?  I doubt it.  Cripes, she has stage iiic breast cancer herself.  Look, what Ms. X and many more of us don’t often acknowledge is that it is empathy that you feel for your family, friends, and colleagues when you think they are having a harder time with your breast cancer than you.   They are NOT having a harder time than you are.  Let me clean off your glasses so you can see clearly: YOU are the one who experiences any one or more of these realities as the result of a diagnosis of breast cancer:

  • One or both breasts amputated
  • Lymph nodes removed and the associated pain and lymphedema
  • Reconstructed breasts you can’t feel anymore
  • Feelings of inadequacy, sexual disengagement
  • Chemotherapy and its associated side effects
  • The loss, in some cases, of employment because of the disease OR
  • The difficulty in finding work after your treatment
  • Experience of (in some cases) multiple surgeries
  • Depression, anxiety, confusion, stress
  • Long lasting side effects from the chemical warfare you were forced to endure: neuropathies, cognitive dysfunctions
  • A period of mourning after treatment that can result in further depression and anxiety
  • Guilt.  Many women feel guilt that they didn’t catch it sooner, guilt they will leave their families long before they planned
  • Fear of recurrence
  • The unsettling unknown of that stage iv landscape
  • Death

This is your reality and no one else can ever really be in your shoes.  How many more women still have to see to their own needs, those of their kids, spouse, clean, make meals, and otherwise set the agenda for the household in addition to their breast cancer experience?  This is not to say there are not supportive spouses out there–far from it–but this misguided response that someone else has it harder than you is yet one more example of women minimizing their experiences.  Whether it be a successful career or a devastating disease, women always minimize their experiences.  We’re not pretty enough, not fit enough, not successful enough, not strong enough, not . . . well, you get the idea.

Your disease sets off a number of emotions in the people around you: fear, concern, and sympathy to name but three.  The people who love and befriend you face their own mortality when they see you.  But they also love you and empathize with you.  They want you to be well.  They are saddened to see you assaulted with cancer.  They may be devastated that they will not grow old with you.  But they don’t have it harder than you do.

If you have breast cancer, NO ONE HAS IT HARDER THAN YOU.

http://thesarcasticboob.com/2013/03/24/the-downside-of-virtual-interaction/comment-page-1/#comment-3392