Oncs trivialize side effects: the 2 big ones

[al from Canada]

The whole process of treatment is quite de-humanizing. I'm pissed that the oncs have very little regard for the two biggest hits a women takes when she starts chemo:
1. wieght gain and
2. lack of libido.
This is mentioned so matter-of-factly that it is demeaning and insulting to say that we will destroy 2 out of the 3 most important things in your identity and not offer solutions. Welcome to the world were Q of L is messured by diarriah, vigilance, cognitive function and lets not forget your level of anxiety and if you need ativan.

It's time to deal with these ego-crushers one at a time.

Start with weight gain, because that was in the most recent post.

As far as I know, for weight loss, calories in must not exceed calories out. Other factors such a hormonal shut down and thyriod aptrophy make play a part. (if you are on dex or pred, sorry, there is no solution untill you stop.)

Lets identify the whys and maybe some of you can offer solutions.

Al

[sarah]

Dear Al,
Thanks for you post. I gained 15 lbs during chemo and have never really lost it and it is annoying.
What a great photo of you both.
You are so strong and you and Linda were such positive influences and brave and you are still, so inspiring.
we send love and our gratefulness to you.
Sarah

[tousled1]

I guess I'm one of the lucky ones as I did not gain weight during my chemo treatment. As a matter of fact, I lost weight! I was also very fortunate that my side effects were minimal. No nauseau, no dirreahea -- the worst side effect was the neuropathy while on the taxatore (decadron pre-med).

[DeborahNC]

I have gained weight since chem/Herceptin began on Nov.4 2005. I'm eating far less and far healthier as well.

Starvation dieting isn't an option as I've so little energy to spare due to chemo induced anemia that is proving difficult to reverse.

Any ideas as to how to solve this would be warmly welcomed.

[al from Canada]

neupogen or neulasta maky be an option if your neuts and CBC is low.

Al

[Monique M]

Weight gain (10 pounds) with the taxol was an issue for me also. Fortunately, I have since lost the weight (Note I have been done with chemo for over a year and it took time). I think we also need to focus on the bigger issue-- eating a diet that will increase our survival. After I stopped chemo I was pretty good about staying with a way of eating similar to the Breast Cancer diet which was mentioned recently in another thread. I recognize, however, that I have dropped back into my old eating habits so I am once again conscious of what I need to do. While I love fruits and vegetables, one of my biggest problems in this area is finding recipes that incorporate the guidelines of the breast cancer diet. A variety of recipes would go a long way (at least for me) in keeping me interested in following the plan.

Is anyone else interested in designating a place where recipes can be posted and shared (Joe-- is this even possible?). I like to cook and have my regular recipe sites but I feel I could learn much more from everyone on this site who has similar goals and is at war with this disease.

Peace and Blessings!
Monique

PS-- Al I love the picture of you and Linda-- a beautiful couple! You and your family continue to be in our thoughts and prayers.

[al from Canada]

May 21 (foodconsumer.org) - Postmenupausal women who gain weight in adulthood face a higher lifetime risk of all types of breast cancer, particularly those most dangerous forms of the disease, according to a new study.

Published in the July 1, 2006 issue of Cancer, the study reveals that the greater the weight gain as an adult, the greater the risk for breast cancer of all types in terms of histological types, tumor stages, and grades, particularly advanced malignancies.

Women who gained over 60 pounds were up to three times more likely to have breast cancer spread than women with less weight gain, a finding that has not been reported before. This is in agreement with a previous finding that obesity increases risk of dying from breast cancer.

Breast cancer risk was about 70 percent higher in women with a weight gain of 21 to 40 pounds and 1.8 times greater in women who gained between 41 and 60 pounds.

Obesity has been well associated with breast cancer risk in previous studies, but there is no data on whether that risk is specific for the type of the disease.

The study, led by Heather Spencer Feigelson, Ph.D., M.P.H of the American Cancer Society, looked at the link between weight gain and type of invasive breast cancer among 44,161 postmenopausal women who were not taking hormone therapy.

The researchers found that the greater the weight gain, the greater the risk for all types, stages, and grades of breast cancer, especially for late-stage cancer or cancer that had spread to other parts of the body.

Compared to women who gained 20 pounds or less during adulthood, women who gained over 60 pounds were almost twice as likely to have ductal breast cancer and more than 1.5 times more likely to have lobular type breast cancer, according to the study.

The risk for metastatic breast cancer increased for all women who gained weight, with the risk greater than three-fold for women who gained over 60 pounds.

Weight gain is expected to increase the risk of estrogen receptor positive breast cancer only. But there are many other theories to explain the effect of weight gain on breast cancer.

According to the estrogen theory, with fat tissue the primary source of estrogen, the hormone levels in postmenopausal women are 50 to 100 percent higher among heavy women than lean women. Estrogen-sensitive tissues are therefore exposed to more estrogen stimulation in obese women, leading to a more rapid growth of estrogen-responsive breast cancer.

The effect of obesity on breast cancer risk depends on a woman's menopausal status. Obese postmenopausal women have 1.5 times the risk of women of a healthy weight compared to those with a healthy weight whereas obese women somehow have a lower risk of developing breast cancer, earlier studies found.

Obesity can also increase risk of death from breast cancer in postmenupausal women compared with lean women.

The distribution of body fat may also affect breast cancer risk, previous studies have found. Women with a large amount of abdominal fat have a greater breast cancer risk than those whose fat is distributed over the hips, buttocks, and lower extremities.

The current weight is not as important as a woman's weight gain from the age of 18, the researchers say.

"these data further illustrate the relationship between adult weight gain and breast cancer, and the importance of maintaining a healthy body weight through-out adulthood," Dr. Feigelson and colleagues conclude.

In the United States, 220,000 new cases of breast cancer are diagnosed each year. Among them, scientists estimate 41,000 new cases or about 11,000 to 18,000 deaths per year from breast cancer can be avoided if women maintain a healthy weight throughout their adult lives.

An estimated 64 percent of U.S. adults are either overweight or obese, according to the 1999-2000 National Health and Nutrition Examination Survey (NHANES). Obesity is believed to be responsible for 3.2 percent of all new beast cancer cases diagnosed each year.

Excess weight gain is also linked with many other types of cancers, according to earlier studies. It is estimated that 20 to 30 percent of cancer cases including breast cancer are associated with obesity.

Preventing weight gain can reduce the risk of many cancers including postmenopausal breast cancer, earlier studies have found. Experts recommend that people establish habits of healthy eating and physical acti

[Sandy H]

Al that is a good start but you can add the hair loss to your list. There are times when it is convenient just to flop a wig on and go but sure is a pain if one is camping, or traveling with others who have never seen us with no hair or don't even know we wear a wig!! As you know I am such a vain person and enjoy my nails and nice looking hair so I have made a collection of wigs. That is how I am dealing with hair loss. As for the two you mentioned well the weight gain I have not been able to figure it out. I do know I have to eat frequently to keep my strengh up and I don't like the weight gain but then I have other more important things to worry about. A great picture of you and Linda. I am still at a lost that our sister Linda is no longer with us. God bless you Al and I am so happy you are here to continue to support us. We need more men doing this. Sending you a big hug during this difficult time. Sandy

[AlaskaAngel]

Al, I can't say in words how much it means to have a man openly recognize how degrading it is to have these precious parts of us sacrificed without even an attempt at counseling for most of us, much less any actual serious investigation into ways to decrease these problems if at all possible while offering therapy.

For weight gain, I have seen postings from others noting that they refused the use of things like Decadron or asked for lowered doses, as a way of avoiding so much weight gain. I only WISH I would have been more aware of this option when I was doing chemo. I seriously question whether all of this that we get has been standardized for the all-around consideration of benefit vs detriment.

For libido, I think the best place to start is with thorough explanation with counseling PRIOR to and DURING any therapy. For me personally, with dx at age 50, I feel the chemopause effects on libido amounted to the equivalent of a partial lobotomy. I have no idea why doctors would think it is anything else. We already have SOME idea that hormonal balance may be part of the change with homosexuality, so why on earth would we think that such extreme hormonal change would not have a significant effect on the female personality and identity, along with the changes in energy level. We already know that women who are not worried about breast cancer TAKE added estrogen to "feel better".

I participated in the clinical trial for breast cancer patients to be given a low dose of testosterone to see if that would help with libido, because I felt that someone needs to learn more about natural hormonal balance. I think the outcome did not support the use of testosterone but I don't have the actual results and have requested them.

Thanks again for your empathy, Al.
AlaskaAngel

[Lani]

discussed all HISTOLOGICAL types of breast cancer (ie, infiltrating ductal vs inflammatory vs lobular vs medullary) rather than what are now felt to be the true subtypes of breast cancer (basal-type, her2-type, luminal A, luminal B and normal) based on Genes/proteins/biomarkers. Thus it is still possible that her2 breast cancer (as in article cited in my previous post) is not associated with obesity. As her2 testing gets better and more widespread we might get a better hold on this...

I posted two interesting articles --one on weight redistribution related to specific kinds of fats (I am sure RB will comment) and the other on weight loss related to an agent that affects PPAR. All are food for thought

[cherylynnie]

While in the oncologist office receiving treatments I really haven't noticed any obese people, so when I read this I am a bit puzzled. I guess the numbers come out to be 18% (41,000/220,000). And not everyone in the dr. office are breast cancer patients, so maybe it is unlikely that I wuold see any obese bc patients.

And I am or was premenopausal (39 yrs), it seems that this info is on postmenopausal women, so how does it apply to premenopausal women?

Now I will admit I have gained 30lbs. over the years, but according to my height and weight - bmi- that only puts me 5 pounds into the overweight category. But it seems its is how much weight you have gained as an adult that this study is siting. Will we really ever know why?

I had my kids early, and breast feed them, started my period at nearly 15, am not a drinker or smoker. So weight gain and non regular exercise are my calprits. Or are they? There are happy, jolly, overwieght women who are perfectly healthy.

Somehow I have figured this is what I have to go through, and hope one day I will find out the why, but am not going to find that out anytime soon. I am going to fight this and get through it as long as God allows me.

As to the libido, I feel very sorry for my husband. The onc. last told me that it was probably more psycological than physological. I am not sure which it is, but I know I have been through alot and sex is not something I think about, sleep is more important to me right now than anything, unfortunately.

[suzan w]

Thank you, Al, for this post! These 2 subjects are ones I have questioned my onc. about. Although she is a terrific "doctor" and really knows her stuff, and fights for what is best for her patients, she does not HAVE breast cancer and cannot identify with symptoms that are not in the "manual". That is why support groups like this are so important...real people...real problems!! And, even though there may not be easy solutions, at least it makes me feel like I am not nuts when I mention weight gain-10 lbs since chemo...and loss of libido!

Now that I think about it...starting 2 years before I was diagnosed, I put on 10 lbs. over the course of a year. I have a small frame and was always at the low end of the ideal weight chart, so didn't pay too much attention to the 10 lbs. However...most of the weight went to by breasts, which went from a 32-A to a 34-C. The rest of my body didn't change much...I was also taking hormone replacements which I feel are implicated in my ER+ breast cancer. Just a few thoughts...!!

[al from Canada]

Susan,

They say that hind-sight is 20/20 which I don't neccessarily agree with but, I think intuition is just as powerfull as any stats we read about and your comment about breast size may just be the bit of info that makes the light go on in someone elses head. Now weather the enlargement contributed or it was the cancer, attracting the E to the breast area; doesn't matter, it's the connection that may count.
Thanks for sharing,
Al

[Lani]

tibolone is not available in the US--there is a lot of literature on it (lipid profiles while on it, etc) as it is used for hormone replacement in Europe

FYI:

Maturitas. 2006 May 25; [Epub ahead of print] Related Articles, Links

Clitoral circulation in postmenopausal women with sexual dysfunction: A pilot randomized study with hormone therapy.

Nappi RE, Ferdeghini F, Sampaolo P, Vaccaro P, De Leonardis C, Albani F, Salonia A, Polatti F.

Research Center for Reproductive Medicine, University of Pavia, Italy; Department of Obstetric and Gynaecology, IRCCS Policlinico "San Matteo", University of Pavia, Piazzale Golgi 2, 27100 Pavia, Italy.

OBJECTIVE: The aim of the present pilot, randomized, study was to assess hemodynamic status of clitoral erectile tissues in postmenopausal women reporting female sexual dysfunction (FSD), namely libido and arousal disorders, under hormone therapy (HT). Vaginal health and sexual function were also investigated. STUDY DESIGN: Fifty patients presenting for clinical evaluation of menopausal status and suffering from FSD were randomly assigned to receive tibolone (2.5mg) or 1mg 17beta-estradiol .5mg NETA (EPT) for 6 months. The observational period lasted 7 months during which women underwent to duplex Doppler ultrasonography to obtain clitoral hemodynamic data, were evaluated by using the vaginal health score index (VHIS) and filled in the two-factor Italian McCoy female sexuality questionnaire (MFSQ). RESULTS: Tibolone significantly increased clitoral peak systolic and end diastolic velocity (p<.001 for both), while no significant difference was evident in clitoral circulation of women under EPT at the end of the study. Both tibolone and EPT significantly increased VHIS (p<.001), an effect already evident following 3 months of HT. The atrophic state was significantly improved at 6 months (p<.001) with no significant differences between the two HT regimens. After 3 months, both tibolone and EPT significantly increased the sexuality score (p<.001, for both), but such an effect was significantly more pronounced in FSD women treated with tibolone in comparison with those assuming EPT (p<.002). Between the 3rd and the 6th month, tibolone caused a further significant improvement of sexuality score (p<.001), while women under EPT did not show any significant further change displaying a lower score (p<.001) at the end of the study in comparison with women assuming tibolone. CONCLUSIONS: Clitoral circulation in postmenopausal women reporting FSD is significantly increased under tibolone in comparison with EPT with a better improvement of sexual function, as measured by MFSQ, following 6 months of treatment.

PMID: 16730929 [PubMed - as supplied by publisher]

[AlaskaAngel]

Use of estriol is also more common in Europe... thanks for the info about tibolone... there is also a trial for a vaginal treatment that is a SERM...

A.A.

[mamacze]

Al,
Once again you raise two very relevant topics.
I will "weigh in" and confess to adding 15 pounds. Also, since my total hysterectomy, I have been as dry as the sahara desert and of course, hormone replacement of any form is not an option. Counseling would be welcome on both fronts as both are problems that plague us daily. I wonder if the lack of discussion is due to the fact that the docs just aren't used to us ladies living as long as we are, now with Herceptin.
Thank you again Al for your insights.
Love Kim from CT

[al from Canada]

OK, I'm almost sorry I brought this up because after reading the study on clitoral circulation, (thanks Lani, we love you), all's I can say is wow..... and Kim, you may feel dry as the sahara but remember one thing, you look just as Hot as the sahara as well, all's you have to do is spread the word..
love, al

[Karen t]

From a friend who also had BC and was ER+/PR+/her2-, I learned about the Estring. The Estring is a small rubber or plastic ring that is inserted vaginally and delivers very small doses of estrogen to address the problem of being as dry as the Sahara. It works and my onc approves.

Coincidentally, I mentioned to my gyn that the Estring was also improving my incontinence problem. She referred me to a urologist who tested my output of urine and discovered that due to a sagging bladder, it did not empty completely and that was also contributing to my continuous urinary tract infections that started back in 2002 when I had AC. The Estring, even though pliable, was helping to prop up the bladder so it could empty better.

To make a long story short, the urologist and gyn gave me a pessary (a larger ring that is less pliable to insert - you can view them online by Googling pessary) and an estrogen cream to apply every 3 days (also approved by my onc). I remove the pessary and reinsert with the cream on it about once a week which seems to be enough. As a result, the dryness problem is pretty much history and the incontinence is resolving itself. Have not had a UTI for several months (knock on wood)!!!

BTW, I have been on wkly Navelbine continually for almost a year along with wkly Herceptin so the dryness would have definitely been an ongoing issue.

Hope this isn't too much info – I had a hysterectomy in 2001 with ovaries also removed, I am turning 60 this year - and libido is doing OK.

Hope this helps.

[mamacze]

Karen,

Thank you for your advice...I was on an estrogen ring but my oncologist told me absolutely no hormones and I am ER/PR negative. He also vetoed estrogen cream. I wonder why the difference...I am metastatic Her2+++ and ER/PR -, with mets to the lungs ...post total hysterectomy...and actually, I am getting worked up now for another primary neuroendocrine tumor, unrelated. Well, don't get me wrong, we can get creative, but Al is right, it is an issue that the onc's just aren't prepared to address.
Love Kim from CT

[Unregistered]

Dear Kim and Others,

There is no explanation for why so many oncs and other docs have such different outlooks on these subjects. I am also metastatic (lungs and sternum), ER/PR- and her2+++). As mentioned in my original email, my dear friend whose is ER/PR+ and whose family has the BRCA gene, was the one who told me about the Estring and she is using it with the blessing of her onc.

Somewhat along these lines, my onc told me the reason I was getting so many UTIs was that I take too much Vitamin C - I take even more since that conversation and the UTIs have stopped.

My onc also told me all food turns to sugar so cutting back sugar doesn't matter. However, the UCSF Comprehensive Cancer Center is hosting a "Cancer as a Turning Point" conference September 9 & 10 and one of the main presenters is Patrick Quillin, author of books including "Beating Cancer with Nutrition." Chapter 11 of his book is entitled, "Sugar feeds cancer."

My gyn wrote in the report of my last visit with her that I am promising to cut out probiotic capsules - she implied these were contributing to my UTIs. There was no point explaining to her that there is a difference between healthy bacteria in the intestines and the e coli that I was having in my urine.

Whether or not to take vitamins such as C and E during chemo and rads is another whole discussion....

Take care.

[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 (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 (http://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

[Joy]

I have definitely experienced lost libido over the years with treatments and in and out of menopause etc. I'm considered post menopausal now, I think. I, fortunately have not had weight problems and I'm kinda proud of that, especially as the years go by.

The twist part is that I'm not dry and I have a new sense of libido. But here is my stupid problem, that I've written about before-so forgive me-I have not had a date in over 4 years. I would love to date someone (Johnny Depp, Bono, Eddie Vedder, George Clooney-you know a date ;)).

My friends are very encouraging about how I look right now (as we all know with this damn disease that can change fast), but I just don't know how to put myself out there with this diagnosis. I'm not shy or anything, but I just feel like such a lemon that no one could be interested and that I can't hide it or lie about it either.

And besides having desire for a little 'sexy time', I just miss male energy in my life. And I bet a lot of you mamas know that experience. My friends are fantastic and they are all women, which if forced to decide I'd pick them over anything. I have 2 daughters-t-rif-and even our 2 cats and puppy are girls. My ex is just my ex and doesn't satisfy the male energy thing.

My friends have great husbands who are my friends too and many are attractive and fun and flirty, which we all have a good time with, but I don't hang out with them much AND they are my friends' HUSBANDS.

When I had no libido it was really easy to resign myself to the fact that I would never have a date or sex again in my life. Now that for whatever reason it has come back I'm having a sadder time with that. I'm still technically in my 30's at least til October, my friends have said nice things about how I look, including the husbands, I have hair again and I would like to think that I can be fun to goof off with, but I just don't think that can happen.

I'm really just venting and I appreciate you reading and letting me do that since the subject of sex has come up and very importantly so. I'm so happy for all of you who are rediscovering and enjoying time with you guys-it is so important and for those who haven't gotten there I so hope you find the thing that works and that you feel as feminine and beautiful as I know you are.