I need help

Hello everyone,

I was Stage IIIb, Her+++, ER & PR pos, 6 out of 13 nodes positive.

I have been on this journey since Feb 03 and for the most part manage to do okay. I had a lumpectomy, dense dose AC and Taxol, radiation, unsucessful attempts with tamoxifen, zoladex (couldn't tolerate them; tamoxifen elevated the liver enzymes, and zoladex put me on another planet emotionally). Mar 2005 after much hesitation I removed the ovaries, (one stupid OB/GYN told me not to even bother, because my prognosis wasn't good - didn't give him the pleasure of taking out my ovaries) then in Sep 05 started every 3 week herceptin treatments. I have 3 left, and am looking forward to feeling like my second home is not in the oncology ward of the Doctor office. After this I will with much apprehension start taking Aromasin. I am feeling like I am on a emotional roller coaster sometimes - I spent most of the day in tears - tried to have relations with my husband, and it just isn't working for me - sex is just down right painful. And maybe I am on a pity party today, but I feel like I have been through too much the past 3 years not to be able to enjoy the physical pleasures of sex that I used to experience. Also, the anti-depressants that were working (zoloft) don't seem to stop some of the severe depression feelings I have been experiencing - and with the Doctor's advice I went from 50 mg to 75mg. I guess I am afraid I will never feel okay again. It just seems so hard sometimes. I am glad to be alive, but would like to improve my quality of life. I guess I need help from you all, and welcome your suggestions. Thank you all.


Barbara

[Berta]

Barbara: Sorry things are so tough for you right now. I had a hysteretomy 9 years ago (way before BC diagnosis). The hormone thing does something to your libido but it does even out after a while. As for the pain, this is kind of personal but using KY jelly can help that a lot. The depression may be hormonal as well. Have you thought about trying another antidepressant? Meds don't work the same for everyone and often when one doesn't work , another one will. I think you should ask your doctor what he thinks about trying another one. Sex will get better and your depression will also. It takes a while for the hormones to settle down. BERTA

Hi Barbara:

I am sorry to hear about your loss of sex drive.

It has happened to me as well. I think that the chemo combo (I took A/C plus taxol) does something to the hormones that completely kills the sex drive and the ability to have enjoyable sex. I also believe that it is a very common side effect based on annecdotal conversations that I have had on line and with other women in our position. I realize that it isn't a side effect that is listed from the chemo, but women's sexual issues are in general under-reported and seldom scientifically examined....did you know for instance that it is only a few years ago that a master's anatomy student in Canada mapped the blood vessels and nerve endings of the vagina and clitorus for her thesis? It had NEVER been done before..........NEVER before published. The penis of course has been mapped for about 40 years.

I went to quite extensive lengths researching this issue. One of the reasons that it isn't being explored is that many women blame themselves or their "head space" or their surgery. They rationalize it away by saying.....well because I am in menopause......Or they are too embarassed to report it.

I went to a sex specialist at my cancer clinic, and she told me that she sees a lot of breast cancer patients. Their stories are remarkably similar. I have also spoken frankly with many women who state that sex for them is down right painful and/or that they just "endure" for the partner's sake.

The sex specialist prescribed "estradial" for me. This resolves the vaginal lubrication problem. She also prescribed "methiltestosterone" which is supposed to help elevate the labido. This didn't work for me.

We are going to try a different type of testosterone that is more natural but to a small extent metabalizes into estrogen. (I am willing to take this small risk as I have done extensive research on it) I have been advised not to have a lot of hope in this regards. There is also the possibility that viagra might help. Almost anything that the sex specialist can suggest or prescribe is both off-lable and experimental within a women's context. There is just no research. She has told me there are virtually no doctors available in the world with her particular speciality.......women's sexal health/libido issues......and that there is a desperate crying need. All of the medication that she has tried with me is actually meant for men. I just take it at MUCH lower doses that must be mixed at a special compounding pharmacy.

I am now 2.5 years out of chemo. I thought that time would heal, but apparently not. I have so little interest in sex that even when I discovered a new book by my favourite romance writer, I ended up not finishing it. Completely booring. Masterbation is a waste of time.

Don't blame yourself. If your want a more specific conversation, I would be happy to correspond with you by email.

Best of luck,
Merridith

[chrislmelb]

Anti depressants like Zoloft can play havoc with people's sex lives. both women and men experience it. Also, having no ovaries (and maybe on AI) certainly doesn't help wanting to have sex as things certainly are different "down below".
Good luck
Also, Al form Canada posted about this a while ago so maybe check out his posts.
Christine

[R.B.]

For me as a man looking from the outside one of the biggest issues is lack of prior waring as to potential side effects in QOL "feminintiy" issues, to enable patients to factor them into their decisions especially for those who are on treatment borderlines.

I have tried engaging with some well funded UK cancer help sites to suggest that these issues are more fully explored so people may be as informed as possible in their choices - but with little success.

The group reporting the greatest treatment disatisfaction in trials is the premenopausal group.

At a wider level oestrogen - it is important to remember it is made not only in the ovaries but in many cells bone breast fat etc. so I guess ovary removal still leaves the issue of other sources.............. So may questions.

I have had a quick search on NCBI sexuality (nothing) and fertility and DHA fats etc. There was not very much but I did find this

http://www.ncbi.nlm.nih.gov/entrez/q...=pubmed_docsum

1: Med Sci Sports Exerc. 2003 Sep;35(9):1573-80. Related Articles, Links
Click here to read
Lessons from experimental disruption of estrous cycles and behaviors.

Wade GN, Jones JE.

Center for Neuroendocrine Studies, University of Massachusetts, Amherst, MA 01003, USA. gwade@cns.umass.edu

In female mammals reproduction is highly sensitive to the food supply. During lean times, females suspend reproductive attempts in favor of maintaining processes necessary for survival; fertility is restored once the food supply is again abundant. Nearly all aspects of reproduction are affected, including puberty, adult ovulatory cycles, and reproductive behaviors. Work with experimental animals reveals that caloric restriction inhibits release of luteinizing hormone (LH) and female sexual behavior via similar, although separate, processes. The primary metabolic event affecting LH release as well as female sexual behavior is the short-term (minute-to-minute, hour-to-hour) availability of oxidizable metabolic fuels, rather than any aspect of body size or composition (e.g., body fat content). Metabolic fuel availability is detected in the hindbrain and perhaps in peripheral tissues. Metabolic information is then transmitted synaptically from the visceral hindbrain to the forebrain effector circuits. In the forebrain, signaling via corticotropin-releasing hormone receptors appears to be crucial for inhibition of both LH secretion and female sexual behavior.

Publication Types:

* Review


PMID: 12972879 [PubMed - indexed for MEDLINE]



But if you are male and a pig cockel or turkey help is at hand (lots of trials).(below) (weak attempt humour)

At a more serious level fertility and the essential fatty acids are fundamantally entwined. For example lack of essential fats will lead to stop of the monthly cycle (above).

It is not a specific subject I have read up on, but balancing the omega threes and sixes, and ensuring adequate DHA and EPA may help at a general level.

See posts on omega threes and sixes.

Please talk to you medical advisors on dietary changes.

http://www.ncbi.nlm.nih.gov/entrez/q...=pubmed_docsum

1: Theriogenology. 2004 Jan 15;61(2-3):537-49. Related Articles, Links
Click here to read
Effects of n-3 polyunsaturated dietary supplementation on the reproductive capacity of male turkeys.

Blesbois E, Douard V, Germain M, Boniface P, Pellet F.

Station de Recherches Avicoles, INRA, F-37380 Nouzilly, France. blesbois@tours.inra.fr

To measure the effects of dietary n-3 polyunsaturated fatty acid (PUFA) supplementation on the reproductive capacity of adult male turkeys in industrial flocks, the males of 22 commercial farms were fed either a standard diet or a fish oil diet enriched in n-3 PUFAs. The fatty acid composition of the spermatozoa and reproductive performance were measured throughout the reproductive period. The fish oil diet very effectively increased the percentage of n-3 fatty acids (FA) (22:5n-3 and 22:6n-3) in spermatozoa and correspondingly decreased the percentage of n-6 PUFAs (20:4-6 and 22:4n-6): the n-3/n-6 ratio in spermatozoa fatty acids were 0.04-0.07 with the standard diet and 0.32-0.4 with the fish oil diet. These changes did not affect the spermatozoa content of n-9 PUFAs, particularly of 22:3n-9 which is abundant in turkey spermatozoa (9-12% of the total fatty acids). The supplementation was effective in the middle as at the end of the reproductive period. The reproductive capacity of males was modified by the diet and the positive effect of the n-3 supplemented diet increased with age (increase in hatching rates of nearly 2 points at 48-58 weeks for males fed fish oil diet). These results indicate that an increase in the dietary ratio of n-3/n-6 PUFAs is valuable to sustain the reproductive capacity of male turkeys especially when they are getting older.

PMID: 14662150 [PubMed - indexed for MEDLINE]










I posted this some while ago

The site aslo has useful material on it, with some gritty individual thought and comment.



http://www.cancerlynx.com/

Bone Dry three pawprints
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.

kitten picture You are welcome to share this © article with friends, but do not forget to include the author name and web address. Permission needed to use articles on commercial and non commercial websites. Thank you.

[R.B.]

Useful and thought provoking summary giving an idea as to how interlinked and complex it all as -

Fats are high density fuels as well as having a host of other roles in the body

RB



http://www.ncbi.nlm.nih.gov/entrez/q...t_uids=1630733

1: Neurosci Biobehav Rev. 1992 Summer;16(2):235-72.Click here to read Links
Metabolic fuels and reproduction in female mammals.

* Wade GN,
* Schneider JE.

Department of Psychology and Neuroscience, University of Massachusetts, Amherst 01003.

A complete reproductive cycle of ovulation, conception, pregnancy, and lactation is one of the most energetically expensive activities that a female mammal can undertake. A reproductive attempt at a time when calories are not sufficiently available can result in a reduced return on the maternal energetic investment or even in the death of the mother and her offspring. Numerous physiological and behavioral mechanisms link reproduction and energy metabolism. Reproductive attempts may be interrupted or deferred when food is scarce or when other physiological processes, such as thermoregulation or fattening, make extraordinary energetic demands. Food deprivation suppresses both ovulation and estrous behavior. The neural mechanisms controlling pulsatile release of gonadotropin-releasing hormone (GnRH) and, consequently, luteinizing hormone secretion and ovarian function appear to respond to minute-to-minute changes in the availability of metabolic fuels. It is not clear whether GnRH-secreting neurons are able to detect the availability of metabolic fuels directly or whether this information is relayed from detectors elsewhere in the brain. Although pregnancy is less affected by fuel availability, both lactational performance and maternal behaviors are highly responsive to the energy supply. When a reproductive attempt is made, changes in hormone secretion have dramatic effects on the partitioning and utilization of metabolic fuels. During ovulatory cycles and pregnancy, the ovarian steroids, estradiol and progesterone, induce coordinated changes in the procurement, ingestion, metabolism, storage, and expenditure of metabolic fuels. Estradiol can act in the brain to alter regulatory behaviors, such as food intake and voluntary exercise, as well as adenohypophyseal and autonomic outputs. At the same time, ovarian hormones act on peripheral tissues such as adipose tissue, muscle, and liver to influence the metabolism, partitioning and storage of metabolic fuels. During lactation, the peptide hormones, prolactin and growth hormone, rather than estradiol and progesterone, are the principal hormones controlling partitioning and utilization of metabolic fuels. The interactions between metabolic fuels and reproduction are reciprocal, redundant, and ubiquitous; both behaviors and physiological processes play vital roles. Although there are species differences in the particular physiological and behavioral mechanisms mediating nutrition-reproduction interactions, two findings are consistent across species: 1) Reproductive physiology and behaviors are sensitive to the availability of oxidizable metabolic fuels. 2) When reproductive attempts are made, ovarian hormones play a major role in the changes in ingestion, partitioning, and utilization of metabolic fuels.

PMID: 1630733 [PubMed - indexed for MEDLINE]

[R.B.]

Here is another trail this time with reference to sexuality "sexual receptivity".

There must be one or more factors in dietary intake that control this function.

GUESSWORK.

The most likely is fat as this is the most common indicator in human terms as to food availabilty.

DHA / AA would also make sense as being the scarecest / most necessary to reproduction.

In todays world DHA (and EPA and ALA) is the most likely to be in short supply.

See posts on omega threes and sixes, greek diet, cancer diet etc if an area not fully considered and of interest.





http://www.ncbi.nlm.nih.gov/entrez/q..._uids=15528398

1: Am J Physiol Regul Integr Comp Physiol. 2004 Dec;287(6):R1277-96.Click here to read Links
Neuroendocrinology of nutritional infertility.

* Wade GN,
* Jones JE.

Center for Neuroendocrine Studies, University of Massachusetts, 135 Hicks Way, Amherst, MA 01003, USA. gwade@cns.umass.edu

Natural selection has linked the physiological controls of energy balance and fertility such that reproduction is deferred during lean times, particularly in female mammals. In this way, an energetically costly process is confined to periods when sufficient food is available to support pregnancy and lactation. Even in the face of abundance, nutritional infertility ensues if energy intake fails to keep pace with expenditure. A working hypothesis is proposed in which any activity or condition that limits the availability of oxidizable fuels (e.g., undereating, excessive energy expenditure, diabetes mellitus) can inhibit both gonadotropin-releasing hormone (GnRH)/luteinizing hormone secretion and female copulatory behaviors. Decreases in metabolic fuel availability appear to be detected by cells in the caudal hindbrain. Hindbrain neurons producing neuropeptide Y (NPY) and catecholamines (CA) then project to the forebrain where they contact GnRH neurons both directly and also indirectly via corticotropin-releasing hormone (CRH) neurons to inhibit GnRH secretion. In the case of estrous behavior, the best available evidence suggests that the inhibitory NPY/CA system acts primarily via CRH or urocortin projections to various forebrain loci that control sexual receptivity. Disruption of these signaling processes allows normal reproduction to proceed in the face of energetic deficits, indicating that the circuitry responds to energy deficits and that no signal is necessary to indicate that there is an adequate energy supply. While there is a large body of evidence to support this hypothesis, the data do not exclude nutritional inhibition of reproduction by other pathways and processes, and the full story will undoubtedly be more complex than this.

PMID: 15528398 [PubMed - indexed for MEDLINE]

Thank you everyone for your replies. It is a subject not easy to bring up, but has such an impact on our QOL. It least I know I am not alone.

Barbara

[MJo]

I'll be frank. I am on Lexapro and cannot have an orgasm any more. I would also say my desire is blunted. I found the same thing happened before breast cancer years ago when I was on Paxil for a short time. Back then, the sexual dysfunction was the main reason I decided not to stay on antidepressants. Now at 55 with breast cancer and no husband, I have decided to stay on the Lexapro. Possibly chemo and radiation also are part of the trouble, but since I'm on Lexapro, I blame it on the antidepressant.

Hi, there is a long thread over at breastcancer.org called "I want my MOJO back!" in the moving beyond cancer forum. http://community.breastcancer.org/ub...page=2&fpart=1

Lots of gals reporting their hits and misses as far as improving their sex lives. I do remember a few taking Wellbutrin for depression and hot flashes and a nice side effect is an increase in libido.

[MJo]

Dear Unregistered:
Bless you for recommending this site. It's very informative and useful. MJO
http://community.breastcancer.org/u...&page=2&fpart=1

[AlaskaAngel]

I have been very angry about this and won't repeat my prior posts but suffice it to say, hardly any effort is made by those who should be most honest with us -- our medical providers -- to deal with it in any meaningful way -- the very first being to at least sit down and counsel us about it ahead of time. The second is that they should especially target for counseling those who stand to benefit least from the toxic treatment that is offered, since as I understand it, less than 20% actually benefit from the treatment.

I participated in the clinical trial for use of testosterone by those with bc. I am trying to get the actual results of that trial.

Another clinical trial (private company) for a new drug to help with libido (ospemifene) that interestingly also had the possibility of use as a SERM was opened and I contacted them about participating, but was told that only those whose cancer history was 10 years back with no recurrence would be allowed in at least the initial trial. The purpose is for lack of libido, but they are cautious about offering it to those with bc history. So that was a washout for me.

I also think that some research should be done to see if simply restoring our pheromones to our previous level might be helpful.

AlaskaAngel

[fourboysmom]

Hi Barbara, Greetings from another 75 mg of Zoloft user. Hey, it helps, even though sex is lousy ( just ask my husband). It used to be good- had 4 kids, after all! You know, with me the whole body image thing is a big problem. The temporary hair loss was bad enough, but the 1 breast thing just puts me over the edge. Anyone would be depressed. My onc just gave me a name of a counselor who deals with the breast cancer patients...haven't made an appt yet, but I will. I totally know what you're talking about--you are not alone! Love, Janet

[mamacze]

Dear Sisters

This is a problem that MANY of us share....I too had a total hysterectomy and am on nortryptilline (SP?) (antidepressant) to prevent migraines. Because of my BC, I was taken off any and all hormones (including the estrogen ring). As a result, I am dry as the sahara desert, sex was painful and I was discouraged for a long time.

Then I went on the web site sited by MJo above (I want my MoJo back!) and it was a spectacular help. My husband and I tried out some of the ideas, are thinking outside of the box, and we are getting our groove back.

It can happen...so keep your chin up, link to that site, remember that you are radiant and beautiful.......get creative.....sometimes all we need to do is have our head decide we are going to "get it on" and the heart is happy to follow along.

Love,
Kim from CT