Hundreds of billions of dollars have been spent researching how cancer develops, grows and spreads in the body. A fraction of that money has been spent on quality of life issues.
This is how much has been comparatively spent on figuring out how to overcome loss of sexual drive as a result of cancer treatment:
Cue Sound: Crickets Chirping
About ten years ago, I attended the San Antonio Breast Cancer Symposium as a patient advocate. At the end of each day, advocates would gather with a panel of selected scientists and clinicians to discuss the highlights of the daily program and answer questions the advocates might have.
On the panel at one of the sessions was Dr. Susan Love, author of The Breast Book, esteemed UCLA breast surgeon and founder of Dr. Susan Love Research Foundation among other things. She is an amazing woman who can take complex issues and provide analogies and stories to make these issues understandable. From all of my encounters with her, I’ve found her to always be open minded and more than willing to answer tough questions.
One of the big questions on my mind that day was loss of libido that many cancer patients face after surgery, during treatment and even after treatment. This is particularly true of stage 4 cancer patients who are always on some sort of treatment. So I asked Dr. Love if she’s heard about that and what a patient might do to increase her drive.
You could see presenters and advocates squirm in their seats as I asked the question and Dr. Love even blushed a bit. She said she had known about the issue and suggested that patients do things to make them feel “in the mood,” like wearing sexy lingerie or listening to soothing music. You could hear the soft groans from the audience. This time, Dr. Love dropped the ball, so to speak.
A year or so ago, Dr. Love was diagnosed with AML, acute myelogenous leukemia and underwent bone marrow transplant. After her treatment, she gave a short talk to cancer researchers where she stated, “The only difference between a researcher and a patient is a diagnosis. We’re all patients.”
This week, SHARE hosted a webinar featuring Dr. Love entitled “When the Doctor Becomes a Patient.” There was time at the end for Q&A. Guess what question I typed into the Q&A box?
“A few years back in San Antonio, I asked you what a patient could do to overcome loss of libido due to treatment. You answered ‘do something that gets you in the mood.’ Now that you’ve undergone cancer treatment yourself, would you reconsider your response?”
You could hear a little gasp on the line.
Dr. Love responded by saying that the libido issue is real and that it’s extremely complex; there are no real answers to how to overcome it. She publicly regretted her earlier response to my question.
I performed a silent victory fist pump.
Loss of sexual drive is a real issue for cancer patients. Consider these situations:
- Some men undergoing life-saving prostate cancer surgery are left impotent forever
- Mastectomies and reconstruction might leave breasts looking good most of the time, but the owner of the breasts have no sensation as the nerves are severed during surgery. Some are in constant pain from multiple surgeries.
- Young women with hormone sensitive cancers often face permanent premature menopause from surgery, chemotherapy, and/or anti-hormonal drug treatments. They cannot take hormone replacement therapy because this could cause the cancer to come back and potentially kill them.
- Chemotherapy kills fast growing cells, including all the linings to sexual organs. This makes intercourse painful, even dangerous should the patient contract a bacterial infection that the body can’t destroy.
- Cancer treatment is exhausting. Just doing daily activities like showering can send one straight to the couch for a long rest.
One of the biggest issues I hear from women I mentor on the breast cancer helpline who have metastatic disease is that at the very time when they need to be closest to their life partners, their lack of desire can pull them apart. Some cancer patients even divorce during treatment. Think Newt Gingrich and John Edwards.
In a few cancer patient publications, there is a line or two about loss of sexual interest from treatment. It’s listed as a minor side effect in those brochures, but not in pamphlets provided by drug manufacturers. So this condition can come as an unpleasant surprise to cancer patients. They don’t know this is normal for most and they feel inadequate, all adding to overall stress levels.
Most oncologists don’t talk about sexual dysfunction before treatment begins and have little to say if patients bring up the subject. There aren’t any clear-cut answers.
I guess you could say that cancer patients are lucky to be alive. What more do they want? Yes, there’s the pain, the loss of appetite, the overwhelming exhaustion, stress on all bodily organs, and the anxiety of not knowing if disease will spread and kill them.
So your deal with the devil is to take treatment, hope for a cure, and face both short term and long term side effects including saying “buh-bye libido” hopefully only for the time being.
Dear Scientific Researcher,
What you do is extremely important and provides hope to those like me living with metastatic breast cancer. The projects you choose, and the collaborations and advances you make, can be vital to ending the set of diseases known as breast cancer, thereby saving thousands of lives in the future.
I have met many of you on various review panels and have sat in the room with you, discussing the strengths and weaknesses of proposed breast cancer studies. You bring in scientific viewpoints; I bring in the views of the community, particularly the views of the patient advocate. Sometimes you get wrapped up in the elegance of a specific study and shift uneasily in your seats when I ask: “So how does this study help us save lives or prevent the disease from happening in the first place?”
I realize how difficult it is to obtain funding for your labs and that some of you have had to dismiss some talented members of your teams due to lack of funding. I have raised over $50,000 for breast cancer research and have lobbied dozens of times on Capitol Hill to secure your research dollars. I feel your pain.
I have attended far too many funerals cloaked in pink ribbons. Inspiring women, creative women, and yes, demanding women and men have suffered and died at the hands of this disease. Each day, those who call themselves survivors, live with dark clouds over their heads housing thunderbolts of lingering fears that recurrence and death is in the forecast.
When I read funding proposals, it makes me aware how little you really know about curing breast cancer in humans. You don’t know how many breast cancers start, how to accurately detect breast cancers, why mutations happen, why the immune system ignores these aberrant cells, how cancer cells can survive throughout the body and colonize in new locations, or how some cancer cells resist treatment. Sure, you know some, but not enough.
We have spent billions of dollars on breast cancer research, from both the public and private sectors. You have written thousands of peer-reviewed journal articles on the subject. You have attended and presented at hundreds of breast cancer symposia, costing millions of dollars and thousands of hours.
Securing study funding, publishing papers and presenting findings seems to have become an end unto itself for some of you. Finding real cures for real people appears to have been lost in the shuffle.
You study signaling pathways that end up worthless as targets for treatments due to the body’s ability to create redundant systems. You study different dose levels of the same thirty-year-old chemotherapy treatments on lab mice and proudly boast that the new combination extends life a few months. You repeat unsuccessful research studies because prior scientists failed to produce their findings. You plunge into nanoparticle technology to find the right shape to fit into cell receptors in order to develop a toxic payload into cancer cells, and discover the keys can’t find the locks. You study the neighborhood around cancer and try to figure out if that’s what fosters new cancer formation. You spend years discovering new cellular mechanisms, write about them, and then look for your next project.
All of this: Yet people keep dying. At least one has died from breast cancer as you read this letter.
But are you building stairways to nowhere?
What happens after you publish your findings? When you finish a project what happens next? How are your results applied to get us any closer to actual treatments or prevention? How do you hold yourselves accountable to clinicians, patients and the general public? How can you make it less about “publish or perish” and more about saving lives? How can you make sure you ask the right questions before starting any new project instead of building a stairway leading to nowhere?
Are you satisfied with your own progress? How would you feel if someone undergoing treatment looks over your shoulder as you work? Would you personally go to your friends and family, asking them to donate to the work you are doing right now? If your own loved-one was diagnosed with breast cancer, what steps would you take to make sure they would not perish from the disease?
These are important things to think about. I know you work hard. I work hard at staying alive. Both jobs are difficult.
What I’m asking you to do is to consider your role in the fight to end breast cancer. Are you winning or losing? What can you personally do to ask the right research questions that are not redundant or merely interesting, but are important to finally putting an end to breast cancer? How can you make sure that your research makes a real difference and foster translation into the clinic?
I’m fighting the battle every day. Please do what you can to fight with me. Put an end to building stairways to nowhere.
The much-hated (for me) Pinktober is now in full swing. What is Pinktober? It’s the 10th month when yogurt suppliers, kitchen appliance manufacturers, carmakers, Facebook pages and other media messages are tagged with “breast cancer awareness.” They want you to buy stuff and do stuff for the cause. They want to take your money, later donate some of it, and not tell you how they use the funds. Some call this “Pink-Washing.”
This year, there is a “Go Braless for Breast Cancer Day.” WTH? What does going braless have to do with breast cancer and what are people really thinking? Will men go all day with an open fly for prostate cancer awareness? Will teens decide to cut themselves for leukemia awareness? Maybe women with mastectomies and no reconstruction ought to go shirtless for the day. Wouldn’t that raise some “awareness?”
If someone wants to relate to those who have walked the path of breast cancer, there is a Go Bald Day on the 18th of this month. You order and wear a skullcap to honor those who have experienced cancer.
Perhaps for breast cancer awareness, just put a big red X on a section of your breast that you might have lopped off should you end up with the disease (you can do this if you’re a man too), put a giant gauze pad over the top, secure the gauze with uncomfortable tape, and wear that under your shirt all day. Then think about what it might feel like to have something growing inside you, but you don’t know what it is yet and you don’t know if or when it will kill you. This could be “Be A Nervous Wreck for Breast Cancer” day. It’s not about “Saving the Ta-Ta’s” – get real, people!
Do NFL players wear pink wristbands because we aren’t aware of breast cancer, and watching 350-pound linebackers in pink accessories cause people to want to look into issues surrounding the disease? Thank goodness the NFL has an online shop to sell NFL branded breast cancer awareness items. Too bad their message is “A Crucial Catch: Annual Detection Saves Lives” when it’s not totally true. Some of the videos on their pink site, although compelling, do not support the message and are about self-diagnosing the disease and not annual screening. And the NFL isn’t even putting any cash into this campaign. You, as a supporter, can bid on the pink items the players wear in the game. Then your money can go to…um…something. Lucky us!
OK. So I’m being a bit morose. But seriously, what awareness are we raising this Pinktober? What is the new news? Other than writing some insipid remark on your Facebook page “in support of breast cancer awareness,” like answering the question “where do you like to place your purse when driving in the car?” Now your cryptic posted answer needs to start with ‘I like it on the….’ And wow! You’re supporting breast cancer awareness!
But I digress. Again.
What are we raising awareness of? That people get breast cancer? That people are living with breast cancer? We certainly don’t focus on the fact that people are dying of the disease. Everything is pink and rosy in Pinktober. Someone might have been sad for a few months, but now, look how happy they are! They caught it “early.” Aren’t they the sweetest things? Don’t you just want to hug them?
Are we listening to those cute twenty-something women with doe-eyes on ads who think they need mammograms when there is no proof at all that mammograms do anything to save lives in women of that age group? And for that matter, are we aware that mammograms have not been proven to reduce breast cancer death rates in populations under 55 or over 70?
Do we know that death rates have improved only marginally despite the millions and millions of dollars raised in the name of research? And that we have made only a tiny bit of progress, finally discovering that breast cancers are not alike; that most of the time, breast cancer tumors are filled with different types of cancer profiles, not just one? And that most of the treatments used today are based on discoveries made over 30 years ago?
Do we know that we’re not looking for “a cure” for breast cancer but for several “cures”, because all breast cancers are not alike? That a drug that kills cancer in one person makes absolutely no impact at all in another? And that we might kill the bulk of the tumor through surgery, radiation or chemotherapy (the “Slash/Burn/Poison” triplets) but some cancer stem cells laugh at all that hoopla and sit dormant for months or years, and then decide for whatever reason, to start growing?
Are we aware that the 5-year mark of being “clean” after breast cancer treatment means little because breast cancer can easily return ten, twenty, thirty years later, even in the mildest cases? Do we know that breast cancer is not curable, but it is treatable for many but not all? Are we aware that someone dies of breast cancer just in the US every 14 minutes even on holidays?
Do we know that mammograms are not like getting a flu shot? That this screening technique does nothing to prevent cancer; it just detects SOME cancers, while providing huge numbers of false positives causing unnecessary angst and needless biopsies? Would we want a 40% false-positive rate in dental x-rays but declare it’s OK for breast cancer screening? (“I’m sorry, Mrs. Spivey, but it looks like I didn’t need to do that root canal after all. Oops”)
Do we know that we don’t even have a national goal for eradicating breast cancer? (See http://www.breastcancerdeadline2020.org) That scientists have only recently started to share their positive and negative research results to prevent repeating unsuccessful studies to eliminate wasted research time and money? Are we aware that science has found several major links to know how breast cancer acts in the tiniest of cellular mechanisms, but they still don’t know what causes breast cancer to grow in the first place?
There is a lot of awareness that could be raised during Pinktober, but I haven’t seen much that means a whole lot. It’s turned into a salacious time of the year focusing on “ta-ta’s,” “boobies,” and things that jiggle in the night. It’s about selling the latest pink-washed wine or perfume or shin-guard. It’s really not about raising awareness any more. It’s about the selling of “pink” and exploiting all things feminine.
One of the fears first time cancer patients have is losing their hair due to treatment. I’ve found that this fear applies to most women and men facing the prospect of going through the types of chemotherapy causing hair loss.
Flowing locks are symbols of our unique identities. We do what we can to enhance our personas. Both men and women often dye their hair when graying takes over. Men go to great lengths to restore their dead follicles if dreaded male patterned baldness creeps into their lives. Women can also lose their hair to alopecia, but it’s fairly rare.
As a nation, we each spend about $300 billion a year just on home hair care products. On top of that, a year’s visit to the beauty salon can run $500 up to $5,000 annually depending on the salon selected and services rendered. Cumulatively, women average 41 minutes a day just styling their hair at home, which can amount to 7 months of their lives. One poll noted that the average woman spends 72 days during her lifetime just shaving her legs.
You can see that as a culture, we spend a lot of time and money on the fibers growing out of our skin, whether to enhance the ones on our head or destroy the hairs in unwanted locations. We wouldn’t do that if we thought hair was unimportant.
As I sit here with my bald head, I remember the first time I faced the prospect of losing my strawberry-blond locks in 1999. Sure, over the years I had a love-hate relationship with my hair. My sisters both had thick hair and mine was very fine. They wore ponytails; I wore a mousey-tail. I had to be careful to select hairstyles that pumped up the volume versus making my hair look like a flat tire.
The thought of losing my hair was like losing part of my identity. When you have cancer, most people can’t tell you have a life-threatening disease. You look normal. But when you lose your hair with some chemotherapy treatments, it’s as if you are wearing a neon sign shouting, “YES, I HAVE CANCER. LOOK AWAY. HAVE PITY ON ME.” You leave the land of the healthy and enter the land of the sick.
On the one hand, getting poison pumped into my veins to kill cancer cells was what I wanted to have happen. Who needs out-of-control cells crowding out and exterminating perfectly functioning normal cells? But really, does the chemo have to kill off my follicles too? Oh, man!
So what to do? After the first chemotherapy treatment, it would take a few weeks for my hair to start falling out, beginning with a few random strands and then a fistful. I didn’t want to wake up with a tangle of hair on my pillow or shampoo my hair, only to find much of it knotted up and clogging the drain.
Instead of waiting for the fateful day, I asked my hairstylist to shave my head in a back room of the salon. She first cut the majority of it off, then buzzed the balance as my husband and daughter watched. I felt lightheaded and a little sick to my stomach after the deed was done. That night, I slept with a cap to warm my cold pate.
I visited a local wig shop to get substitute locks but was unable to find anything matching the color of my normal look. I tried on blond wigs but they made my sallow skin look even greener. The shop owner suggested I try a short dark red wig just to see what I thought. I liked it but was unsure. She offered to let me wear the wig out in public, and if I wanted to buy it I could, but no pressure.
Walking around Costco in a wig made me feel strange. The wig was scratchy. It wasn’t my color. I thought it might be tilting to one side. I felt conspicuous and checked out any glances my way to find out if people were staring at me. What I discovered was that no one much cared what I had on my head. They were too busy tending to their own business.
I bought the wig the next day, and then I wore it to chemotherapy that week. I looked at all the other chemo patients sitting in their loungers with bags hanging off IV poles; poison seeping into their veins with quiet clicks marking the infusion rate. Of those who had chemo that caused baldness, very few wore wigs. Most donned caps; some went au natural. The four hours of treatment were not very comfortable with the hot, itchy wig on my head, as the nausea-inducing liquid invaded my circulatory system. I wished I could dump the wig and just wear a soft cap, but I was too insecure to just go hatless.
After that, I wore soft caps when going out in public anonymously and a wig to work or to social events. This is also how I handled the second time a few years later when I again went bald due to chemotherapy needed to treat the spread of cancer to my spine and pelvis.
This year marks the third time I’ve experienced chemo baldness. I have yet to put on a wig. I had my son shave my head at home like he did the second time, and I asked him do it about a week before my hair would start to fall out. This time, my hair really bothered me once I found out I was to go through another hair-killing round of chemo. I found it irritating to wash it, style it, and sleep with it. I wanted it off.
I discovered an excellent source of soft caps (hatsscarvesandmore.com) and invested some of the money I would normally spend on haircuts on a new crop of head coverings. No wigs in public; if people stare at me, I smile, say hello and move on. Friends and family know I’m bald so why hide under a rug?
I’m still not leaving the house completely bald. Chemo makes me overly sensitive to sunlight and I don’t need to face a bout of melanoma. I’m also a weather wimp; my head gets too cold even on hot days in air-conditioned rooms.
I’m saving a lot of time not doing my hair; however, being retired, I have the luxury of spending my time as I wish. No more nicks shaving my legs as those hairs vanished a week or so ago.
Do I wish I still had my hair? Yes I do. But I’d rather kill those nasty cancer cells that now have decided to invade my sternum. So I’ll live with being hairless for awhile and avoid watching those commercials with models primping their impossibly long, silky, perfectly styled tresses.