Genuine Informed Consent

[AlaskaAngel]

I received this ACS link:

http://www.everydayhealth.com/breast-cancer/managing/living-with-breast-cancer.aspx?xid=nl_EverydayHealthCancerCareandPrev ention_20090728

This is my response sent to the ACS:

The single most effective thing that would be helpful in dealing with sexuality for most breast cancer survivors would be for the American Cancer Society to provide the patient and the oncologist a list of very specific questions to discuss, one that thoroughly covers genuine informed consent for cancer therapy with a precise description of the possible effects on sexuality. The damage that is being done by medical providers and the American Cancer Society by not making this happen prior to therapy is very traumatic. Providers will generally advise men with cancer about possible effects, but when it comes to women, it is "just menopause". Please quit being codependent and coy, and MAKE the list and distribute it to patients and oncologists.

[michka]

I totally agree. As most oncs are men they do not understand and do not even try advising about the side effects of chemo induced menopause. The article does not even talk about vaginal dryness and the accelerated aging of our body. Without speaking of the eventual residual pains. To say that even an article that is courageously trying to talk about the subject does not dare talk about the real problems. Thank you Alaska Angel for bringing this up again.
Michka

[Ellie F]

Thanks to you both for putting this issue so eloquently. It's a problem that needs addressing in England as well.
Elie

[juanita]

thank you both for bringing this up. never thought to talk to onc about any of this before.

[R.B.]

Well done AA.

This is a huge issue for those on the borderline in terms of treatment regimes, risk profiles etc.

And surely this is menopause plus where oestrogen blockers are used, and it is not a gradual change as happens in nature but a big change in a very short while.

And there are mental hormonal effects as well as physical effects.

And there is the question of hormone signalling to the opposite sex.

AND Oestrogen changes the metabolism. It increases the ability of women to make long chain Omega 3s from the plant based Omega 3s by a factor of 10 over that of men. It also improves Women's antioxidant status. So please make sure you supplement with long chain Omega 3 or eat plenty of fish including oily ones.

And other wider health risks osteoporosis etc.

And fertility issues for younger patients.

Women have smaller more neuron dense brains with more sophisticated wiring which need long chain Omega 3 DHA to work properly.

The article really does not discuss the issues.

[Hopeful]

For anyone who did not see my post in the articles forum last week, here is a link to what I think is an excellent article that recently appeared in US News and World Report: http://health.usnews.com/articles/health/cancer/2009/06/01/cancer-and-sexuality_print.htm

Here is a relevant excerpt:
Conversation Starters With Your Doctor

Many people avoid talking to healthcare professionals about sexual changes because they feel embarrassed, ashamed, or afraid. Some people feel guilty about "bothering" the doctor, or they worry about "being a good patient." However, all patients have a right to information that affects their quality of life, which includes sexuality. It's normal to feel uncomfortable or awkward, but your doctors, nurses, and social workers are a professional team and have training and experience talking about these issues. If you do encounter a doctor or other healthcare provider who dismisses your concerns and questions about sex, seek a second opinion.
Be as open as possible when providing information to help your doctor find the best solutions and remedies for you.

Listed below are suggestions for beginning a conversation:

How do you expect that my cancer treatment will affect my sexuality?
Is it safe for me to have sex? (It is usually safe to have sex during cancer treatment unless your doctor tells you not to. Sex can be a problem if you have bleeding in the genital area from cancer, if you have recently had surgery or radiation implants, or if your immune system is very weakened. Talk with your doctor to see whether it is safe for you to participate in sexual activities.)
Should I be using contraception to avoid pregnancy during my cancer treatment?
Are my sexual changes short term, or do you think they are permanent?
I don't think about sex or feel interested in sexual activity. Why do you think I feel this way?
I think about sex and would like to participate in sexual activity, but I don't feel that my body is responding the way it did before my cancer or cancer treatment. Why do you think this is happening?
I feel tired all the time, and it's negatively affecting my sex life. Is there anything I can do to feel better?
I've noticed changes with my erections since I started this new medicine. What do you think is causing this?
What are some possible remedies that may help me enjoy sex again?
How can I find more information about remedies for sexual changes? How do I go about trying one of them?
My friend told me about a (treatment, herb, supplement, food, etc.) that may help my sexuality. Is it OK to try this?
I feel embarrassed about starting sexual activity because my body is different. Is it an option for me to have cosmetic or reconstructive surgery? Can you refer me to a counselor?
I feel nervous (or my partner feels nervous) about starting sexual activity. Could you please reassure me that it's OK? Are you sure that sexual activity won't negatively affect my cancer or cancer treatment?
My partner told me that (he or she) is worried about catching my cancer or getting sick from my treatment. Could you please reassure us about this?
Earlier this summer, I also posted two other articles that deal with these issues. Here are links to the threads:

http://her2support.org/vbulletin/showthread.php?t=39344&referrerid=1173[/URL]

[URL]http://her2support.org/vbulletin/showthread.php?t=39352&referrerid=1173 (http://<a href="http://her2support.org/vbulletin/showthread.php?t=39344&referrerid=1173" target="_blank">http://her2support.org/vbulletin/showthread.php?t=39344&referrerid=1173</a>)


Hopeful

[suzan w]

Thank you Lois for bringing this up. It is so important!!! It is a subject that I have brought up with every medical person I have encountered...for the most their answers have not addressed the issue to my satisfaction...and the least they can do is TELL us about what the reality will be. Being truthful is not so hard...in fact it is much easier than dodging the issue! xo Suzan

[AlaskaAngel]

Thanks for supporting me about this issue.

The ACS contacted me, providing a link to more materials they have online about cancer survivors and sexuality that are better than the link I had received originally. I had thought the newer link they sent was by e-mail and accessible to me, and so I would be able to pass it on to you, but it wasn't. I will try searching their site for it.

However, I did save my reply to them for you:

Thank you for your thoughtful reply and the reference link to consider.

It is helpful to acknowledge the problems that exist in regard to cancer treatment and sexuality, such as in the following ACS information:

"The first step in finding help for a sexual problem is to talk to your doctor. He or she may be able to suggest someone who specializes in sexual problems.
Many health care professionals, including doctors, have little training in sexuality issues. They may not be at ease even talking about sex. Many doctors also fail to mention the sexual side effects of cancer or of medical treatments. If they do talk about it, they may give such an unclear picture that you may think that your sex life is over. If your cancer specialist can't help you, we suggest you ask your family doctor or other members of your health care team. If your doctors are not able to help you they should be able to refer you for help. There are many different programs and specialists that can help you find the answers you need."

However, acknowledging the problem should also focus on whether or not the doctors should continue to be licensed to advise patients about cancer therapy (and charge for that service) if they are not prepared or willing to provide genuine informed consent. Acknowledgement of the problem with the rationalization that doctors are free to pass the buck (with additional expense to the patient) is a poor choice for improving the status quo.

Again, please support patients as the priority, by providing a list of questions as previously suggested, to be fully acknowledged and discussed between the physician who is responsible for and prescribes the treatments and the patient who is to receive them. The physician actually may find such a list helpful too. If the physician is not capable of doing this then why should they be prescribing the treatments? It should not be up to the patient to be referred down the line until they find someone else to handle it.

Let's get healthy and be up front with patients and doctors.

[AlaskaAngel]

I found the link from the ACS to share with you, and I think it is worth reading for the content that it does offer.

However, the problem with the issues involved (sexuality, as well as dietary influences) is that prior to treatment a patient unfortunately doesn't have the background info to know that there are actually questions that need to be asked. The patient has no particular reason to believe or know that the provider is deliberately not providing essential information about the proposed therapy in regard to those issues :

Talking with Your Doctor:
http://www.cancer.org/docroot/ETO/eto_2_4_talkingwithyourdoctor.asp

AlaskaAngel

[StephN]

A.A. wrote:

<< prior to treatment a patient unfortunately doesn't have the background info to know that there are actually questions that need to be asked. The patient has no particular reason to believe or know that the provider is deliberately not providing essential information about the proposed therapy in regard to those issues :>>

This was exactly MY thought. So, why do Komen and other cancer sites NOT include the sexual side effects as a concern. Most newly diagnosed women now will get on the net and do some looking around, even if for some cursory information. It should be there at the outset.

(Even for those of us dx'd POSTmenopausal, there are changes due to the treatments, fatigue, etc.)

[Hopeful]

A timely article from the NY Times:http://www.nytimes.com/2009/07/30/health/30chen.html?_r=1

Hopeful

[Colleens_Husband]

This is a very interesting subject and this conversation is very similar to a joint paper produced by an interdisciplinary seminar class I had in college. The class was about issues of human sexuality and the class was made up of a dozen students selected from psychology, sociology, biology, religious studies, and medical students.

I guess the most important thing we learned from the class is that sexuality is a whole lot more complex than just biology or psychology can adequately understand. I think all disciplines agreed that the most important sexual organ is the brain.

One of the studies we looked at was a study by the army about the ethics of feeding salt peter to new male recruits in basic training. In the old days the military spiked the food of new recruits with salt peter in order to curb their sexual impulses so they would concentrate on becoming the best soldiers. The army found that if the soldiers believed they were being fed salt peter, it had exactly the same effect as if they were actually fed salt peter.

What this illustrates is that expectations of sexual drive can actually alter one's sexual drive. This is illustrated by another study that was conducted at UC Berkeley in which post menopausal women who had expectations of decreased sex drive generally had a lower sex drive and post-menopausal women who didn't know their sex drive was supposed to diminish reported that their sex drive changed very little.

With that in mind, there seems to be quite a bit of evidence that telling men or women that they are going to have a diminished sex drive because of chemotherapy will more than likely result in a decreased sex drive. However, not telling a patient that they may experience a loss of sex drive may or may not result in a loss of sex drive. I think a physician should do whatever they can to do the least amount of harm and since physicians are rarely trained psychologists, then the default should be to not create expectations of a poorer intimate life.

Human sexuality is way too complex to say that your sex life will be destroyed by a lack of estrogen, a changed body image, menopause, chemopause or most any other physical or chemical thing that can happen to you. Telling people that they may lose their sexuality may lead to a self-fulfilling prophecy. As a person who believes honesty is the best policy, I also think that honesty needs to be tempered with wisdom so that a potentially diminished sex drive doesn't become an extinguished sex drive.

I'm sorry if I offended anyone with this post. I do not want to create a conflict. I do see the reasoning of the people who have posted. I just want to show another side to this issue.

[Hopeful]

Bill,

There are physical changes to the body one must be advised about, not just the potential for diminished libido. Telling someone who is rxed an AI that they may experience some vaginal dryness that can be overcome with the use of over the counter txs leads to a false expectation that intimacy can continue exactly as it had prior to tx if only you utilize lubricant. As someone who has been on these drugs for 3 years, I can tell you this is a profound misrepresentation.

Hopeful

[AlaskaAngel]

Bill,

It is fascinating to try to unravel the nature and reasons for the diminishment of sexuality with the use of therapies that are intended to permanently drop natural hormonal production as much as possible (not just while doing chemotherapy) as a protection against recurrence.

For example, one effect is the sharp reduction in testosterone. Testosterone is not just a hormone that acts to provide sensuality and sexuality in males. Another effect is the lowered level of the pheromones that act in humans to attract other humans for possible relations. How does one put that back by "not being told what the possible effects are just in case negative thinking might be discouraging"? Those losses are not imaginary, but genuine.

Even for those whose therapy helps them avoid recurrence, it is no small sacrifice to make. But all the more terrible is it for someone who has gone through the therapy and is dealing with recurrence AND the loss of that precious expression of intimacy in helping them get through such a difficult time together with someone they love. The violation of trust by not discussing it in advance of therapy to me truly is a form of rape.

While it might seem at first thought that it is more important to avoid the impression that therapy might result in significant loss of sensuality and sexuality than it is to take the time and effort to explain ahead of time what the risks and benefits are, there is no other way to ensure that the person considering treatment is being trusted to make an intelligent choice among therapies that are known to have absolutely no garantee of working at all for any particular individual.

Lying by omission is still lying. This is a shotgun therapy that is being prescribed, with variable benefit (including none) and many support drugs, all of which can result in their own effects on sensuality and sexuality.

It is important to realize that each physician providing the prescription has a personal bias about therapy, and therefore has a reason to avoid allowing the patient to be fully informed prior to making the choice.

As a male, if you were going to choose whether or not to be chemically castrated to avoid recurrence (and there was no garantee that you would not still have recurrence anyway), would you appreciate not being trusted with the information that your sex life stands a considerable chance of being diminished?

AlaskaAngel

[R.B.]

This is a very poignant poem off Cancer Lynx.

http://www.cancerlynx.com/bonedry.html

Bone Dry
Angela M. Sissons, PhD
In Memorium
August 5, 2005


BONE DRY

I'm not satisfied with the explanation.
I didn't come this far in life,
my once-fantastic sex life, to
have it stop bam!
just like that.

Why does menopause have to be
such a foolish time? Hot flashes like
angry hornets buzz inside my
head; emotional seesaws between
full moons this time, he doesn't
love me, yes he does. Oh how
can he love me when we can't make love!

It's not even a menopause I've earned.
Hormonal treatment they call it, for
systemic cancer. But its side effect
is a plunge into wasteland. What do I
do with a closet full of tampons from a
fruitful, juicy past? Tho' the cancer hit
the breast, then the lung (all north of the
equator), it's the southern state that
strangles me. Can't we make love
without pain?

I'm dry as a bone, painful and sore.
My tissues are thin, the elastic has snapped.
My doc says Oh sure, no problem use
this, and this, and this, before sex.
I did, and I did, and I did, and ouch---
what's wrong with me. Am I using it
right? Astroglide, Replenish, Lubrin and more.
Why does it hurt?

Because I'm bonedry, bone dry, dry bones.

[SoCalGal]

I'm tired and somewhat depressed tonight, but I am compelled to say a word or two. First of all, I think a couple of you are calling Lee, "Bill". Ha ha that's really pretty funny :)

Now the important thoughts:

I completely agree that people should be informed 100% and that loosing your ability to have sexual intercourse has never once been mentioned in the 13 years I've survived. Leaving the sexual dysfunction off the side effect list is like leaving off any other side effect. They may or may not happen but a doctor should disclose it all. Telling a patient they may experience nausea might induce the placebo effect, too.

During the last few months of struggling with extreme pain, low libido, migraine cluster headaches as a result of all hormonal vaginal remedies (which actually help the tissue dryness) and not to mention that some woman cannot risk hormonal help - so still with all the disappointment and sadness that not only am I missing my real breasts but now my body won't cooperate and even though I've managed around the penetration issues, it's just crappy, sh*tty, unfair and I don't like it one single bit - BUT despite the sexual outcome, I would still choose to be alive. So even though it would have been good to have a "heads up" what would be better is an actual remedy for this particular side effect. I am so freakin' mad that with all the genius doctors and pricey oncologists, not one of them can help me be me again. It's like this disease just sucks the last bit of being a woman right out of you.

[R.B.]

As a male, if you were going to choose whether or not to be chemically castrated to avoid recurrence (and there was no garantee that you would not still have recurrence anyway), would you appreciate not being trusted with the information that your sex life stands a considerable chance of being diminished?

To the point AA (-:


GO Flori.

Well done for the honesty.

This subject needs to be out in the open so the realities and scale of the numbers affected or not affected become better know, and women on the borderline in treatment terms can make more informed choices about risks and treatment options.

Based on trials I posted a while ago, part of the effectiveness of chemo is simply based on chemical castration (loss of ovarian function). Trials suggest the number of patients that respond to any particular chemo can be limited, and chemo may have wider functional costs. This raises issues as to the relative merits of oestrogen blocking strategies eg ovarian removal v chemo. I have more questions than answers I am afraid, and have not done any reading on this lately.

Herceptin does not have the same effects.

[AlaskaAngel]

Not being informed in advance leaves us with more emotional baggage, including feeling stupid for not knowing or asking enough about it before we did treatment. And as long as we go along with it quietly, the medical machine is not going to see it as a big enough problem to find better solutions for it. How much research have they bothered to do to see if, for example, our ability to smell pherormones has been affected, and maybe come up with something fairly simple to use to help with that?

A.A.

[R.B.]

Hi AA,

Omega 3 DHA helps increase our perceptual responses and higher levels in women may help explain their better sensory perception. Oestrogen increases the ability of women to make long chain Omega 3 DHA ( and long chain Omega 6 to but we do that pretty well anyway). This is another reason to make sure you get enough Omega 3 DHA.

This paper has a lot of relevant information on menopause etc. I have only skimmed it.

The Systemic Nature of Sexual
Functioning in the Postmenopausal
Woman: Crossroads of Psychiatry
and Gynecology

http://www.afwh.org/pdf/primarypsy.Alexander_2003.pdf

I have not had a chance to more the briefly skim this

http://www.gynendonews.com/OLD/Gyn15/pagine_interne_n1/IMS%20proceedings/proceedings/genazzani2%20_1_.pdf

"Quality of life evaluation has become an
essential component of clinical practice to
provide a comprehensive picture of the effect
of the menopause and to assess treatment
benefits.
Menopausal estrogen depletion and agerelated
decline in the production of ovarian
and adrenal androgens may significantly
affect women’s health and well-being."


This emphasises how interconnected everything is

http://www.biolreprod.org/cgi/content/abstract/68/6/2107

Male Axillary Extracts Contain Pheromones that Affect Pulsatile Secretion of Luteinizing Hormone and Mood in Women Recipients1
George Preti2,3,4, Charles J. Wysocki3,5, Kurt T. Barnhart6, Steven J. Sondheimer6, and James J. Leyden4

Monell Chemical Senses Center,3 Philadelphia, Pennsylvania 19104 Department of Dermatology,4 School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania 19104 Department of Animal Biology,5 School of Veterinary Medicine, University of Pennsylvania, Philadelphia, Pennsylvania 19104 Department of Obstetrics and Gynecology,6 School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania 19104

Human underarm secretions, when applied to women recipients, alter the length and timing of the menstrual cycle. These effects are thought to arise from exposure to primer pheromones that are produced in the underarm. Pheromones can affect endocrine (primer) or behavioral (releaser) responses, provide information (signaler), or perhaps even modify emotion or mood (modulator). In this study, we extracted underarm secretions from pads worn by men and placed the extract under the nose of women volunteers while monitoring serum LH and emotion/mood. Pulses of LH are excellent indicators of the release of GnRH from the brain's hypothalamus. In women, the positive influence of GnRH on LH affects the length and timing of the menstrual cycle, which, in turn, affects fertility. Here we show that extracts of male axillary secretions have a direct effect upon LH-pulsing and mood of women. In our subjects, the putative male pheromone(s) advanced the onset of the next peak of LH after its application, reduced tension, and increased relaxation. These results demonstrate that male axillary secretions contain one or more constituents that act as primer and modulator pheromones.


http://jrsm.rsmjournals.com/cgi/content/abstract/100/6/268

[Christine MH-UK]

Thank you for addressing this, Alaska Angel.

By the way, did anyone else notice that this piece seems to consider mastectomy as just a lifestyle choice? What about those of us who didn't have a choice because the cancer was just too big?

[R.B.]

Hi AA,

Does this message board have the ability to set up an anonymous survey on line to try and get a better idea as to number impact etc.

[AlaskaAngel]

Christine MH-UK,

I appreciate your comment. Ever since receiving the initial ACS information I have been puzzled, because it seems to me that if they have people on their editorial staff who have had bc and were listening to what they might have to say, we probably wouldn't be having this discussion!

RB,

I did an anonymous poll around 2 years ago related to this topic but it was just a rough effort. It is worthwhile to see if I can do a better job of it. Thanks (as always) for so much good info, and the suggestion.

A.A.

[vickie h]

A.A.. Thank you for posting this. It is a much needed topic to be discussed. There was no mention of any thing even remotely tied to this subject when i was diagnosed 5 1/2 years ago and it appears it is still not be discussed frankly between Oncs and their patients.