Posted by Lisa Rosenthal on Tue, May 14, 2013 @ 12:39 PM
Angelina Jolie's Double Mastectomy: Looking at Choices
Angelina Jolie had both of her breasts removed. She writes about her decision in a NY Times op-ed "My Medical Choice" published today. She did not have breast cancer.
Yet.
The word yet serves two purposes; two definitions.
Yet, she is statistically predisposed towards it.
Yet, she wasn’t afflicted by cancer when she made the decision to have her breasts removed.
She could afford to make that decision.
Afford.
The word afford serves two purposes here; two definitions.
One, she could afford, bear, the financial resources to have the gene testing and surgery and follow up surgical procedures done.
Two, she could afford to have her breasts removed because they are organs with which we can live without.
Just like our ovaries, uteri and fallopian tubes.
We can live without them.
But we can’t conceive, become pregnant or carry a baby without them.
We can do those things without breasts. We cannot breast feed after mastectomies.
But we can conceive and carry a pregnancy to term without our breasts.
I believe that Angelina Jolie made the right decision for herself and her family. Everything I’ve read has been thoughtful and insightful. Not that it’s really any of my business to approve or not to approve.
This was a personal decision that she made. She chose to share it publically. Not everything that she is saying resonates with the public. She’s talking about her own personal experience. While I’ve not had breast cancer or a mastectomy, a very close loved one or two, or three, have. I’m glad that Angelina’s recovery, both physically and emotionally, was so gentle. She’s clear the whole process is not so gentle. It’s painful and challenging and debilitating. Some will argue that she downplayed the recuperation; I know what I bore witness to was not what she described. Again, this was recounting of her own personal experience. And maybe it’s even only what she’s decided to share. She may not want to share each detail. Her right. Her choice.
Personal Choices During Infertility
Infertility and fertility treatment is also personal choice. Personal choice based on disease. Unlike the statistics that the gene BRAC1 represents, infertility, disease of the reproductive organs, is present when it interferes with pregnancy.
We come back to definitions.
Infertility.
Infertility, a disease or malfunction causing reproductive organs not to operate properly.
Infertility, an inability to become pregnant after one year of correctly timed sexual intercourse.
Infertility, the inability to carry a healthy baby or pregnancy to term.
Infertility, whether able to be pinpointed and specifically diagnosed or not, causing a woman the inability to become pregnant or stay pregnant to deliver a live baby.
Angelina Jolie made a choice. While three thousand dollars for BRAC1 testing feels outrageous and expensive and creates an elitism situation in our country, it barely registers for me.
Why?
Sounds insensitive on my part. Unintelligent even. Distinctly un-feminist.
Yeah, it even feels that way to me.
So why? Why my lack of reaction to the three grand for the testing?
Medical Insurance Coverage for Infertility
Because I sit with men and women three times a week, every week, in Fertile Yoga, in Ladies Night In, I correspond with them through the blog, who have no medical insurance for reproductive disease, also known as infertility.
That’s why.
Because we’re talking about thousands of dollars. Sometimes tens of thousands of dollars. Sometimes over and over again.
No reimbursement. No insurance coverage.
I have enough moral fiber to expand and so I will make that choice right now.
It’s reprehensible that testing for BRAC1 is three thousand dollars, uncovered by medical insurance.
It’s as reprehensible that medical treatment to correct or compensate for infertility creates the financial burden that it does, unrelieved by medical insurance.
Because, I’m sorry, the take away message is that if you are poor or uninsured, or underinsured or your insurance specifically excluded infertility treatment, then you are not going to be treated for your medical condition of infertility.
Just as if your family history would indicate BRAC1 testing is necessary and you didn’t have the three thousand dollars.
I’m glad that Angelina Jolie spoke up about this. I’m glad that her chances of developing breast cancer have gone from 87%, all the way down to 5%. I’m glad that she and her family came to a decision that they could afford to support.
Afford.
Definition.
They had the money to have the testing done.
We don’t all have that.
Lisa Rosenthal's Google+
Posted by Lisa Rosenthal on Thu, Oct 04, 2012 @ 10:16 AM
Meeting Heros at a Night of Hope
It's history month, at least for me, at least for this week.
Tuesday night was the RESOLVE, Night of Hope. Look below for the first line of a blog that I am repeating from two years ago. Starts with hope. Which is a favorite word of Dr. Mark Leondires, who was kind enough to invite me to the Night of Hope evening.
So a lovely, lovely night of seeing friends that I have not seen in a long time. A good excuse to dress up and hear updates on how everyone was doing.
A rather magical evening for me. First, no traffic driving in NYC. New York City. A rainy night, rush hour and almost no traffic. Lovely.
So we got there early.
And, as we women do, first stop, the bathroom.
There was my hero, drying her hands. We took one look at each other, started to giggle and fell into one another's arms for a heartfelt hug.
Best fifteen minutes of my evening, getting to speak to Lindsay. She is still beautiful, still sweet, still so gosh darn smart. We caught up on the last several years.
There are moments in my life when I feel my past, present and future very distinctly. That night was one of those moments.
Not an hour or so later, I heard all the details of Lindsay's past. It wasn't the first time, hearing them. Hearing them so eloguently spoken by her, reminded me of our first meeting, at her first conference. I remember how young she was, how nervous and yet so unbelievably determined and confident in her cause. Just ten years ago.
Below was the first blog I ever wrote on a Fertility Hero. I'm leaving it largely intact, although since two years ago, Lindsay and her husband have had a third child.
From a women who had her second bought of cancer at 24 years old. Now the mother of three, having made sure that her cancer did not destroy her chances at motherhood.
Lindsay, you are still one of my heroes.
A True Story of Fertile Hope and Heroism
A story of hope.
Fertile Hope. We all have our heroes in life. Mine tend to be close to home. My parents, who defied professionals and raised a child who had a little understood disease.
My grandparents, who stood by all of us, even when barely comprehending the generational gaps between us. My Fertile Yoga students are my heroes and I get to meet new ones each week. I say it often, and I'm happy to say it again here, infertility treatment is not for the faint hearted; it takes a hero.
Oh, and my husband for being in our marriage for coming up on 26 years. He is my hero for putting up with me for so long.
Another hero of mine is Lindsay Nohr, a beautiful soul I am lucky enough to know. Lindsay is the founder of Fertile Hope, a not-for-profit organization dedicated to fertility preservation for men and women diagnosed with cancer. Fertile Hope is now part of Lance Armstrong's LiveStrong Foundation. (Another hero of mine, but that's a story for another day.)
Fertility Preservation, Courage and Foresight
Lindsay was diagnosed with cancer for the second time when she was 24 years old. Yes, 24; yes, for the second time. Lindsay was mature and courageous enough to look ahead, to believe that there would be an ahead and ask about her fertility for the future. And there were no easy answers. So she dug and called and asked and kept going until she found Dr. Lynn Westphal from Stamford who was willing to freeze Lindsay's eggs. This was back in 2000 when the technology was in its own embryonic stages. Freezing embryos is a very delicate process. For those men and women facing cancer treatment though, it can often be the only or best option.
Her thought process when speaking to her physician concerning her fertility in terms of her cancer? "He said, 'Let's focus on saving you first. If you're not alive in five years, having a baby isn't an issue,' " Beck said. "I agreed, of course. But I thought there must be something I can do now."
Lindsay was 24 years old when she was diagnosed the second time. A year later, she founded Fertile Hope and has made it possible for thousands of men and women to know what their options are when faced with cancer and seeing ahead to their own fertility. Seeing your own mortality and being hopeful enough to still see possible fertility. That's why she's one of my heroes.
Posted by Lisa Rosenthal on Tue, Dec 07, 2010 @ 07:30 AM
Dr. Leondires brought this to my attention yesterday. News we all want to hear; that trying to conceive a child and using advanced reproductive technologies do not seem to cause cancer. It's being picked up by news agencies all over the world as it's really the best news possible.
We want our families, but at what risk? Even if we were willing to take the risk of illness for ourselves, it's only fair to ask about how that would effect the child that we have brought into this world. Ironic that we even have to question that the medicine and treatments that could create a child could also create disease. How does anyone make that choice? Why should anyone have to?
The good news, as being celebrated the world over, is that you don't have to choose between a child and possible cancer. Read on to see exactly what the report has to say :
By Lynne Peeples 
NEW YORK (Reuters Health) Dec 02 - Fertility treatment may not be tied to an increased risk of cancer, suggests a new study from Sweden.
Some prior studies had suggested that fertility drugs might be linked with breast, uterine and ovarian cancers, but the numbers of women followed in these studies were small, said lead researcher Dr. Bengt Kallen of the University of Lund in e-mail to Reuters Health.
In new research reported online November 18th in Human Reproduction, Dr. Kallen and colleagues analyzed registry data from 1982-2006 on 24,000 women who gave birth after in vitro fertilization (IVF). They compared rates of cancer in these women and in 1.4 million women in the general Swedish population who also gave birth in those years.
Fewer than 2% of women in the IVF group developed one or more cancers during an average follow-up of 8 years, vs close to 5% of the control group.
After accounting for maternal age, number of previous pregnancies, and smoking status, the overall risk of cancer was about 25% lower for women who had IVF.
"A couple who needs IVF does not have to be afraid that the hormone treatment used -- at least those used in Sweden -- will carry a risk for the woman to develop cancer," Dr. Kallen told Reuters Health.
The risk of ovarian cancer was more than twice as high in the women who had IVF as in those who didn't, however. Dr. Kallen suggests this may be due to abnormalities in ovarian function, which both increase the risk for infertility -- and therefore the need for IVF -- and the risk for cancer.
"The risk for two common cancers, breast and cervical, was significantly lower than expected," Dr. Kallen said.
Dr. Kallen also offered two possible explanations for these surprising findings: women who got IVF may have been healthier than average, or perhaps more likely, IVF-treated women may undergo more mammography and cervical exams.
The only fertility drugs currently used with IVF in Sweden are gonadotropins. Prior to the mid-1990s, these drugs were used in combination with another treatment, clomiphene.
Gonadotropins are also the primary fertility hormones prescribed today in IVF clinics across the U.S. Clomiphene is used only very rarely, Dr. Helen Kim, Director of the In Vitro Fertilization Program at The University of Chicago, told Reuters Health.
Despite some concern regarding the relatively homogenous population of Sweden, Dr. Kim - who wasn't involved in the study - believes its findings should be fairly generalizable.
Posted by Lisa Rosenthal on Tue, Jun 08, 2010 @ 07:43 AM
Infertility is not
cancer. It is not heart disease. It is not neurofibromatosis. And we should feel very grateful that it is none of those things. It is not life and death.
Hmmm.... Or it is? It's certainly the inability or a challenge to bring life into this world. It can be the death of the dream of a biological child or family. The death of a family and offspring created between you and a partner. I heard it put this way last weekend, "its like having a small death each month".
Our sense of mortality is sorely tested when faced with infertility. While it's not our own death that we are facing, there is no question that we have to consider the finish of our family lineage. Our family DNA, certainly, but beyond that as well. Our traditions, rituals, religion. Our memories, where and who do they go to? How do our memories of a beloved Grandmother or Great Uncle go on living and breathing without children to pass them on to? Who will pass those things on? And ultimately, who will pass on memories of you or me? This is the mortality that we face. That we are it. The end of the line.
If you are rolling around the word selfish or narcissist in your brain, stop right there. Like other living beings on the earth, we have an instinct to procreate. These days it's not so much for extra hands in the fields, helping us harvest. Maybe it was never entirely that. There is the unmistakable, undeniable urge to love and nurture that is associated with wanting a child, a family.
How lucky we are to live in an age and time where there are so many ways to create a family. To have a child in our lives that may not be of our own biological lineage, may not even live in our homes, but live in our hearts. Facing infertility head on, allowing yourself to grieve for what you wanted that may not be possible, acknowledging losses is a clear path to moving forward. Grieving is a healthy, normal process for dealing with loss. And infertility does create loss, no question about it.
If you are feeling these losses, if they are feeling enormous, consider getting some help. That help may come from traditional therapy (Lisa Tuttle, PhD and Jane Elisofon, MSW are wonderful therapists who specialize in infertility); help can come in less traditional ways as well. Perhaps a dance class, drawing class, golf lessons. Something that puts you back into feeling alive, with growth and new potential. Low level depression can sap energy and make you feel that almost everything beyond the basics is impossible. Definitely the right time to call either Lisa Tuttle or Jane Elisofon or a therapist in your area if that's true.
What does infertility feel like to you? Sharing with others may help them feel that they are not alone and may create a sense of relief for you in expressing yourself.
Posted by Lisa Rosenthal on Mon, Jun 07, 2010 @ 05:48 AM
A story of hope. Fertile Hope. We all have our heroes in life. Mine tend to be close to home. My parents, who defied professionals and raised a child who had a little understood disease. My grandparents, who stood by all of us, even when barely comprehending the generational gaps between us. My
Fertile Yoga students are my heroes and I get to meet new ones each week. I say it often, and I'm happy to say it again here,
infertility treatmentis not for the faint hearted; it takes a hero.
Oh, and my husband for being in our marriage for coming up on 26 years. He is my hero for putting up with me for so long.
Another hero of mine is Lindsay Nohr, a beautiful soul I am lucky enough to know. Lindsay is the founder of Fertile Hope, a not for profit organization dedicated to fertility preservation for men and women diagnosed with cancer. Fertile Hope is now part of Lance Armstrong's LiveStrong Foundation. (Another hero of mine, but that's a story for another day.)
Lindsay was diagnosed with cancer for second time when she was 24 years old. Yes, 24, yes, for the second time. Lindsay was mature and courageous enough to look ahead, to believe that there would be an ahead and ask about her fertility for the future. And there were no easy answers. So she dug and called and asked and kept going until she found Dr. Lynn Westphal from Stamford who was willing to freeze Lindsay's eggs. This was back in 2000 when the technology was in its own embryonic stages. Freezing embryos is a much more delicate process than freezing embryos; one far less successful. For those men and women facing cancer treatment though, it can often be the only or best option.
Her thought process when speaking to her physician concerning her fertility in terms of her cancer? "He said, 'Let's focus on saving you first. If you're not alive in five years, having a baby isn't an issue,' " Beck said. "I agreed, of course. But I thought there must be something I can do now."
Lindsay was 24 years old when she was diagnosed the second time. A year later, she founded Fertile Hope and has made it possible for thousands of men and women to know what their options are when faced with cancer and seeing ahead to their own fertility. Seeing your own mortality and being hopeful enough to still see possible fertility. That's why she's one of my heroes.