Oncs trivialize side effects: the 2 big ones

[Karen t]

Just noticed that the email addressed to Kim and Others says it's from an Unregistered Guest. It was from me: Karen t.

[Lani]

look at my new post--will add it in a couple minutes-- vis-a-vis "sugar feeding cancer" It is not that simple --it seems that cancer prefers to use a path to metabolize sugar that does not involve oxygen (as it often outgrows its blood supply and has learned to thrive in anoxic conditions)

It is a remarkable discovery in that noncancer cells get 90% of their energy by the other pathway--sounds like a great target to attack!

Lani

[Karen t]

Lani, I have not seen your new post about sugar/cancer. Hope it didn't get lost somewhere. Very much looking forward to your info.

[Lani]

Prior Function and Relationship, More Than Hormones, Affect Sexual Function for Midlife Women CME
News Author: Laurie Barclay, MD
CME Author: Désirée Lie, MD, MSEd

Disclosures

To earn CME credit, read the news brief along with the CME information that follows and answer the test questions.

Release Date: July 22, 2005; Reviewed and Renewed: July 20, 2006; Valid for credit through July 21, 2007


Credits Available


Physicians - maximum of 0.25 AMA PRA Category 1 Credit(s)™ for physicians


July 22, 2005 — Prior function and relationship factors are more important than hormonal determinants of sexual function for women in midlife, according to the results of a population-based, prospective study reported in the July issue of Fertility and Sterility.

"Longitudinal analysis of the relative effects of age and hormonal factors on aspects of female sexual function found that age impacts negatively on all domains of sexual function and that lower E2 [estradiol] levels significantly adversely affect women's sexual interest and responsiveness (arousal, enjoyment, orgasm) but not the frequency of sexual activity," write Lorraine Dennerstein, PhD, from the University of Melbourne in Parkville, Victoria, Australia, and colleagues. "The midlife years, when most women pass through the menopausal transition, coincide with other social transitions as children leave home and parents may experience ill health associated with older age. In addition, some women may lose (or gain) sexual partners, some of whom have their own problems with sexual performance."

In this questionnaire study, 438 Australian-born women age 45 to 55 years who were still menstruating at baseline were interviewed at their homes. Eight years of longitudinal data were available for 336 of these women, none of whom had had a hysterectomy.

On the basis of longitudinal structural equation modeling, sexual response was predicted by prior level of sexual function, change in partner status, feelings for partner, and E2 level (r2 = .65). Prior level of dyspareunia and E2 level predicted dyspareunia (r2 = .53), and frequency of sexual activity was predicted by prior level of sexual function, change in partner status, feelings for partner, and level of sexual response (r2 = .52).

The minimum effective dose needed to increase sexual response by 10% was 700 pmol/L E2, or twice the dose needed to decrease dyspareunia.

"Prior function and relationship factors are more important than hormonal determinants of sexual function of women in midlife," the authors write.

Study limitations include the yearly measurements of hormones, the lack of sensitivity of certain assays, and study dropout over time.

"The level of E2 needed to produce a minimal clinically relevant difference on sexual response is twice that needed to improve dyspareunia," the authors conclude. "E2 replacement thus needs to be equivalent to mid– to late–follicular phase levels of regularly cycling women. This suggests that the low doses of estrogen currently advocated in hormone therapy will not be effective in sustaining women's sexual function."

Fertil Steril. 2005;84:174-180

Learning Objectives for This Educational Activity

Upon completion of this activity, participants will be able to:
Identify important predictors of sexual function in women during the menopause transition.
Describe the relationship between E2 and T levels and female sexual function during the menopause transition.
Clinical Context

Population-based studies have shown that women have more sexual dysfunction than men and that sexual function declines with age and length of relationship, according to the authors. Women's sexual function is hypothesized to be more dependent on psychosocial factors such as relationship, family, and partner issues than on hormonal factors. This is an analysis of the Melbourne Women's Midlife Health Project, an eight-year prospective, longitudinal study using annual questionnaires and hormone blood assays with the aim of deriving a correlation between domains of female sexual function, hormonal status, and relationship factors during the menopause transition.

Study Highlights

Participants were Australian-born women age 45 to 55 years recruited by telephone interview. Inclusion criteria at baseline were menses within 3 months and not taking oral contraceptive pills or hormone therapy (HT). Exclusion criteria were menopause induced by hysterectomy or endometrial ablation, use of oral contraceptives, and inability to participate in annual blood hormonal assays.
336 of 438 eligible women comprised the analysis sample.
Sexual function was assessed by the modified Personal Experiences Questionnaire (PEQ) and its short form (SPEQ), and the domains assessed included frequency of sexual activities, sexual response (arousal, interest, enjoyment, and orgasm), feelings for partner, dyspareunia, and change in partner status. Women completed the questionnaires themselves at home during an annual interview and handed sealed envelopes containing the completed forms back to the field worker.
Hormonal assays were performed on the day of annual interview. Fasting morning samples were obtained between days 4 and 8 of the menstrual cycle or after 3 months of amenorrhea. Assays were obtained for follicle-stimulating hormone (FSH), E2, T, sex hormone-binding globulin (SHBG), dehydroepiandrosterone sulfate (DHEAS), and immunoreactive inhibin (Inh).
Because previous analysis had demonstrated that libido was not separable from sexual responsiveness, these domains were combined in the analysis of sexual response.
Analysis was by year of study, with a total of 8 time periods for the 8 years of follow-up, using the year before and the year after the final menstrual period (FMP) as the menopause transition.
There were 4 menopause status groups: those menstruating within the prior 3 months, those with 3 to 11 months of amenorrhea, postmenopausal women with at least 12 months of amenorrhea, and those receiving HT. The latter group was analyzed as a subgroup.
Women's sexual response was correlated with domains of the PEQ and hormonal levels.
Significant change in hormone level was seen for FSH, E2, and Inh, occurring in the year before the FMP. The largest change was for FSH and E2.
As women passed through the menopause transition in the year before and after the FMP, there was a significant decrease in sexual response and frequency of sexual activities and an increase in dyspareunia.
All the variables examined highly correlated with the values of each variable in the prior year.
The androgens were constantly poorly correlated across time periods. The rate of age decline of T was slow and not specifically related to menopause. DHEAS levels did not significantly decline with the menopause transition and showed only a slow decline with age.
The key predictor of sexual response was prior function. The second predictor was whether the woman had lost, remained with, or gained a new partner. The third predictor was feeling for partner.
Changes in E2 levels significantly affected sexual behavior, and the effect of the menopausal transition on sexual function was overwhelmingly caused by the marked decline in E2 level. E2 level had an effect on only 2 domains of sexual function: sexual responsiveness and dyspareunia. The effect of E2 level was of less importance than that of prior level of function, change in partner, and frequency of sexual activities, demonstrating a powerful effect of psychosocial factors on sexual functioning.
Treatment with HT increased the level of E2.
Analysis of the HT subgroup showed that the dose of E2 needed to improve the subjective aspects of sexual function was twice that needed to improve local symptoms of vaginal dryness. The minimum dose of E2 to teach a minimal important difference was between 650 and 758 pmol/L.
Pearls for Practice

Predictors of sexual function in women experiencing the menopause transition include prior functioning, frequency of sexual activities, feelings for partner, change of partner and E2 level.
The dose of E2 needed to minimally improve sexual response at the menopause transition is twice that needed to improve vaginal dryness. T level does not predict change in sexual response.

[MJo]

Feel I must post this site again. It's excellent for libido issues

http://community.breastcancer.org/u...&page=2&fpart=1

MJO

[AlaskaAngel]

This is just one message I've received from another patient, but it is genuine, and I offer it as food for thought. The issue of loss of sexuality is invisible most of the time and because of that it gets lost in the shuffle of treatment. I think it is tragic if we cannot find ways to productively do a better job of offering more realistic options to people who suffer enough from a cancer diagnosis as it is:

"During one of the chats we began discussing sex. Well, one woman recommended cocoanut oil--boy is that a good suggestion--and then you brought up the topic of smoking and whether that might influence the sex drive as it did when we were kids?

I finally got a sample. Well, smoking allowed me and my husband to have sex for the first time since diagnosis. (over 2 years) He has a lot of problems sexually and if I don't make a real effort, then he can't. And I have felt like it before. If I do make an effort--and I did--yesterday--then we can have a lot of fun. So thanks. Don't know if I will ever get more, but it sure was fun while it lasted."

[janet/FL]

Hi Angel
I know you have participated in a trial using testastrone. Did that not help?
Has anyone else talked with their doctor regarding sex and cancer?
I will answer in part my own question. I did talk with my gynocological oncologist. I mentioned on the paper they had me fill out that I great problems in this area that I didn't know if they were solveable. He didn't address it and falied to give me a perscription of Vagifem--which he had in the past and seemed to work quite well for vaginal dryness. And I failed to ask further. Next month at my regular appointment, I will talk with him about sex and cancer.

[AlaskaAngel]

Yes, I participated in the NCI trial for use of low dose testosterone by bc patients. I have asked for the results but haven't received them yet (trial was done in 2004). I cannot say definitively that it made a difference, but that may be because the trial was limited to one month's use only and the testosterone was specifically not to be used in the genital area. In all the other discussions among both cancer patients and noncancer patients that I've seen, including the TV presentation on Oprah about this, the testosterone was genitally applied and I think that probably does make a major difference in outcome. I do not know if that means there was a bias that affected the outcome.

IMHO, there is a distinction between libido and sensuality/sexuality. Libido is the broader sense of joy of living; sexuality is just one type of libido. Treatment affects libido.

There is a phase III clinical trial that is being done for a drug that may improve libido and by coincidence is also a SERM, which is interesting. Was it discussed at SABCS? It was mentioned at one point by one of the reputable cancer centers.

I do want to add more commentary that I received from the lady who sent me the comments yesterday:

"I finally got a small sample of marijauna from someone who knew I had breast cancer. My DH and I were excited to try it as we have not had relations since diagnois and that was over two years ago. I could just not get in the mood. Well, we did try once, but it was so painful I didn't want to do so again.
To complicate the problem, my husband has some sexual issues that even viagra doesn't solve totally. I need to be in the mood for it to work for him!
Well, smoking, a little bit of brandy and some cocoanut oil put us in the mood. Lots of fun. Some pain, but, I think mainly I lost my inhibitions and fear of pain and just was enjoying it as was he.
Definitely worth a try, if possible. Sex is one of God's gift to us. And with all we go through, we sure can use all the gifts we have. Can't believe it can't be given to us, even by prescription."

[janet/FL]

Angel
Prior to breast cancer, when my endocrinologist supplied me with testoastrone, his directions were to put it on my arm. He had to rapidly reduce the dose because it was too strong. But it worked. I felt like a 17 year old boy probably feels! So, I don't know if one could just use a lower dose in the genital area, if that would help.
The doctor expressed no desire to put me on teststorne following the BC diagnois and said that some women might even want to sue him under the circumstances. So no testosterone until the results of the study you were in--at least!

Now if marijauna were legal, I would think that would be worth a try. It was recommended to me by one of my bc nursing staff for many of the common problems of bc patients. Nausa, anxiety as well as the possibility of feeling normal sexually. Unfortunatelly, the nurse couldn't write me a prescription! :-(
Dr. Andrew Weil is hoping that it will soon be legalized as a plant that has many uses, both as rope, food, and medicinal. A good money making crop that is not utilized in the USA.

[Donna]

Al, Thank you sooooo much for bringing this up. I was afraid to post about the libido and dryness issues which make the loving relationship with my husband strained. Not that he would ever say a word, but I know better. My oncologist seems to take the attitude that I am being kept alive by these treatments and that should be all I care about, but quality of life is an issue, especially if all of this works and we have long lives to look forward to. There must be some way we as a group can lobby for research into this area - and the weight issue as well. I am newer to the group, but has any type of group effort been made before to address issues like this with some sort of medical consortium that could help us?

Best to You All,

Donna

P.S. I had just lost 30 lbs. before diagnosis and gained back 18 :-(

[Lauriemn]

Well, I have been taking testosterone for almost a year. It was prescribed by my endo after my levels came back very low. I am 38 and in permanent menopause from chemo. He told me that not only could it help with libido, but with mental clarity. For me, it has helped. I use a gel, on my arm, 3 times /week. I am er/pr- and I also use premarin cream for dryness. I have found that astroglide is a great lubricant, also.

Laurie

[R.B.]

I have posted this before.

Maybe it should be pinned to the notice board in BC treatment areas to focus attention bring the topic into the light and ensure that younger patients are fully aware of possibe outcomes in so far as they have any choice in more marginal cases.

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

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

RB

[AlaskaAngel]

Doctors and patients are not being open about this issue and so it festers.

Loss of libido affects sexuality and that is difficult enough to deal with, but libido is also more than sexual. It has to be recognized that depression with breast cancer hasa genuine hormonal basis.When a person's life experience based on hormonal levels has taught them that they have a particular role in life as female or male, and especially when they have taken on sexual attachments and responsibilities to others, and that hormonal level is abruptly destroyed by treatment (along with any physical changes and, for some, the nightmare of mets) there needs to be in-depth counseling in support of that wound, including careful advance preparation PRIOR TO treatment. There also needs to be genuine commitment to further research to try to find better ways to care for it.

Although each of us is isolated from each other's experience in dealing with this problem, two things that were also evident in this study are:

1. Estrogen deprivation with breast cancer treatment is much greater than the estrogen deprivation that comes with ordinary menopause. It likely is much more difficult to treat, including vaginal dryness that is worsened by further treatment. We all need to stop pretending that it is nothing more than common menopause.

2. The percentage of patients suffering from this issue may be as high as up to NINETY PERCENT.This is happening to a very, very large group of people, not only the breast cancer patients, but their significant others.

I hope you will join me in raising the consciousness of your own health care providers, in breaking down the barriers for the next woman with breast cancer who sees them.

AlaskaAngel

[Mary Anne in TX]

Hi To All!
Suzan, I too gained a couple of sizes in my breasts a couple of years before diagnosis also! My hair went from very straight to wavy. Loved both and then WHAM!!!!!! Oh, the blindness of pride! Love to all, ma

[Hopeful]

I suffered from VA prior to the start of anti-estrogen therapy. I told my onc this in an early visit, and he did not address it - it was as if I had never said anything.

Six months into estrogen therapy, I had my annual gyn exam and the VA had progressed to the point where the gyn was not certain she could gather enough cells to do a pap smear. Two days later I saw my onc and told him about my gyn exam, and said I had VA. His response was, "How do you get THAT?" I tried explaining in further detail, and he did a quick "google" on it while I was in his office. He started to catch on. He said he would review my issue with a colleague at a major cancer center nearby. The colleague's suggestion was to switch from the AI to Tamoxifen and try some topical estrogen therapy. I am postmenopausal, and got a very high score on the Oncotype Dx test which says to me, if nothing else, that Tamoxifen is definitely not an option for me.

Last Thursday I saw my onc for my Herceptin treatment, and raised the issue once more, as my 3 month follow-up with my gyn is the day before my next Herceptin treatment. I told him point blank that I was unable to have sex, and this was a big QOL issue for me. He did not hedge or blink, but looked me straight back in the eye and said he understood and that I was right - it is a major QOL issue. He said he would not object to my staying on the AI and seeking topical estrogen therapy from my gyn.

Alaska Angel, you are right, we need to tackle this issue with our doctors head on. We need to make our needs and issues known, and insist they be addressed. I think a lot of patients would have been put off by the "how do you get THAT" question; no doubt, these providers also need to do their part to keep lines of communication open. IMO, bc treatment is de-humanizing. What good is it to save the body, and lose the essence of what makes us human? Anyone reading the comic strip "Funky Winerkbean" can relate to Lisa's observation last week: "I want to live the time I have left, no just be alive." Amen.

Hopeful

[Karen t]

Not sure if this could work for you since you are hormone positive, but a friend of mine who is also HRPR+ (and also either BRCA 1 or 2) was given a prescription for Estring and has been using it for a couple years (I believe). It is a vaginal ring that dispenses 2mg estradiol for 90 days before being replaced. I have been using it for a couple months now and it's working wonders for my VA (I am hormone negative).

[Hopeful]

Karen,

That is one of the options I plan to discuss with my gyn. Thanks for sharing your (and your friend's) experience.

Hopeful

[hutchibk]

I again believe that I have the best onc in the world. He apprised me from the beginning that 1. I would lose my hair, sorry; 2. be put into pretty immediate menopause and would suffer libido loss, suggesting that I talk to my GYN for ideas and that he would defer to her; and 3. probably gain weight due to menopause, steroids, anti-depressant, nausea mitigating eating, and being sedentary from lack of energy. Though I didn't like any of it, I was not surprised when it all happened. Since that first course of treatment 3.5 years ago, I have lost 12 of the 20 lbs I gained, I have learned a lot about regaining libido and desire (though it's certainly not as it was before, however I don't blame my onc for that) and my hair has come and gone a few times due to the different treatments.

Hopeful, I found that Estrace cream helps me tremendously. It is only 1% estrogen applied vaginally. I use it about 3 times a week to help prevent atrophy and dryness and loss of feeling. It has worked very well to restore most of these concerns. My onc believes that it is not enough estogen to have a systemic effect hormone wise. I would check with your onc, though, to get their take on it first.

[Zorro]

Kelly

www.adoptionscams.net

[Patricia]

Suzan and Maryanne,

I also gained weight in my breasts prior to dx. My husband and I used to joke about them, they were so much bigger than before and we thought it was fun, a present with 'age'. And then - WHAM (like Maryanne said)!! It was over. I had been on Seasonnale. This is a birth control that allows you to only have 4 periods a year. I suffered from terrible hormone induced migranes (but I mean the kind where I was vomitting, my face once looked like I had a stroke and had been paralyzed). The ob/gyn suggested it was from the Estrogen withdrawl when I took the placebos to have my period while on the pill. She advised me to just skip the placebos and continue to take the active pills and to do that for 3 mos, then have a period and then do it again. A few years later, Seasonnale came out and she immediately put me on it. It was the approved method of what she had been prescribing.

I am very suspicious that my bc was related to this method. I feel now that I should have known or at least have been more suspicious, that it was a bad practice, but I was too naive. Well.. no longer I just wished my dr had worried about it.

I too have VA, have gained weight, have had my body do a redistribution of itself and my libido is lost. Estring has helped but seems to have lost some of it's effectiveness. I have been on it 9 mos. I am looking to hear anything that anyone else has tried. I fear my time with the Estring is limited.

Hugs,
Patricia