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Tamoxifen, hot flashes, & sex

kacilee
Posts: 2
Joined: Oct 2000

I was diagnosed with breast cancer last July and had surgery to remove the lump, have been
treated with radiation therapy and am now taking Tamoxifen twice a day. Since my cancer was
estrogen positive, I was immediately taken off estrogen which was helping me with hot flashes.
Since I have been on the Tamoxifen, I have been experiencing hot flashes, but they do seem
to occur less and less every day. I still experience them in bed at night and I feel the need to
throw the covers across the room as far away as I can. I also have been totally turned off by sex.
My sexual desire has completely disappeared, and the dryness that occurs when my husband
attempts penetration just makes it no fun. I cannot reach an orgasm even by manual means.
I just feel like it's hopeless even trying. My doctor tells me that I will get back to somewhat
"normal" in about a year or so, and hopefully I will. But right now, I miss the feeling of "connection"
with my husband and the closeness that comes with an intimate relationship. If there is anyone
else out there going through the same thing or experiencing these same symptoms, please
write. It would help to know that this is normal and it will get better someday.

pamtriggs's picture
pamtriggs
Posts: 408
Joined: Sep 2000

Dear Kacilee
What you are experiencing is the extreme side of normal. I find little sexual urge these days (I am on Tamoxifen) but then it was diminishing before then after menopause anyway. We have a hot tub & I find I am quite turned on when in that and the water relieves the pain from my bone mets and allows a lot of "fun". Hubby is very understanding & always willing whenever I show the urge and is never demanding of me. It sounds as if yours is the understanding kind too. Sometimes I have sex just to please him & he accepts that even if I do not really enjoy it that much.. Just being close is nice. Try some lubrication (KY Jelly) and some natural therapies available out there that may help. Best of luck. Love & hugs. Pam

judyd
Posts: 130
Joined: Nov 2000

Hi, my name is Judy. I was also taken of estrogen. I am starting on tamoxifen. WOW, sounds like I have so much to look forward to. YEAH! Won't my husband be excited to hear that. Lucky for him he is gone a lot anyway. HA!HA! I am glad to know that bit of info though so if it happens I will know it is somewhat normal. It is so nice to hear from other people going through the same things you are. Good luck to you. Judy

sueholm's picture
sueholm
Posts: 221
Joined: Oct 2000

geez, i hope it isnt normal! yikes

mjdp2's picture
mjdp2
Posts: 142
Joined: Nov 2000

Thank God this site isn't censored. Lubrication might be provided by having your hubby use lubricated condoms (which hubby might protest) or saliva from oral sex (gasp!!), a topic that was brought up in our pre-marital counseling. Margaret

judyd
Posts: 130
Joined: Nov 2000

Ellen, thanks for your words of encouragement. It is always nice to hear from someone who has been where you are or maybe where you are going. I think so much of all of this is not knowing what to expect. My husband has been just great through all of this. We have also been through several things in our lives in the last couple of years. It has done nothing but make our relationship stronger than it ever has been. We have been married almost 31 years. It just keeps getting better. Always support each other & love each other. Wishing you all a great day. Judy

jane38
Posts: 137
Joined: Aug 2000

Ellen, you are so right about the closeness is what counts. My significant other conveniently bounced out of my life right after the mastectomy. He called a couple of times while I was on chemo, but he really could not handle it. As he works at the hospital where I went to have my reconstruction, he found out about the surgery and came to visit me. Then he wanted to start coming around because I was all better, no longer sick. I let him know that I needed someone to be there for me during the bad times as well as the good times. He just didn't fit that description. I further told him that I was looking for a relationship with someone who would be there and if I never found it, so be it. I had conquered breast cancer without a significant other's support and therefore I could conquer anything by myself. So, ladies, just be very thankful your guys are there beside you, holding you and taking care of you, even with all their crazy little idiosyncracies. You will handle the sex thing. There are ways to get around it if it's not possible. Closeness is everything. Friendship with your guy is everything. Someone to share things with is everything. The sex is icing on the cake. Cake is pretty good without the icing. Jane

jane38
Posts: 137
Joined: Aug 2000

Ellen, you are so right about the closeness is what counts. My significant other conveniently bounced out of my life right after the mastectomy. He called a couple of times while I was on chemo, but he really could not handle it. As he works at the hospital where I went to have my reconstruction, he found out about the surgery and came to visit me. Then he wanted to start coming around because I was all better, no longer sick. I let him know that I needed someone to be there for me during the bad times as well as the good times. He just didn't fit that description. I further told him that I was looking for a relationship with someone who would be there and if I never found it, so be it. I had conquered breast cancer without a significant other's support and therefore I could conquer anything by myself. So, ladies, just be very thankful your guys are there beside you, holding you and taking care of you, even with all their crazy little idiosyncracies. You will handle the sex thing. There are ways to get around it if it's not possible. Closeness is everything. Friendship with your guy is everything. Someone to share things with is everything. The sex is icing on the cake. Cake is pretty good without the icing. Jane

cherdaetwyler
Posts: 165
Joined: Dec 2000

yeah, me, too...
since usual tamoxifen cycle is 5 years it doesn't sound like a "normal"
situation to be expected to cope with that for that long, even a year to
return to some sort of normal just doesn't cut the mustard..
I can see this will be my new research subject for spare time today...
there have to be some things out there that will help Kacilee without
raising estrogen levels.
My onco nurse told me to take mego doses of vit. E to help with the hot
flashes. since chemo through me immediately into menopause (it was
due anyhow but I didn't expect a 5 day response time after the 1st chemo)

My body was so conused it went ahead and had a period just 8 days after
the first chemo, alternating flashes and chills, topped by cramps. I was a real
*****.
Will let every one know when I find out any really good infos for the problem.

cher

carolh's picture
carolh
Posts: 19
Joined: Jul 2000

Hi ladies, this is Carol. I haven't contributed for a while but have been "lurking" and keeping up with everybody!
I just wanted to add my two cents worth to this particular discussion. After a diagnosis of b.c.,
going through chemo and radiation, etc., it's really not surprising that sex might be the last thing on our minds!
I've been on Tamoxafin for nearly a year now and have suffered dryness, hot flushes and lack of
libido, but I think that comes after menopause anyway so I don't think I can blame it all on the
Tamoxafin. There are ways to cope - as some of you have said - KY, etc. My naturopath prescribed
borage oil for hot flashes and that seems to work fairly well for me. I also gave up coffee (which was
tough to do) and I think that helps too.

So to any of you who are newly diagnosed and concerned about your future sex life, let me
assure you that, at 56, my sex life is far from dead, and the hot flashes are a minor inconvenience
which I keep telling myself will eventually disappear!

love, Carol

sueholm's picture
sueholm
Posts: 221
Joined: Oct 2000

thanks carol! since i am probably getting remarried this topic is of interest to me.Intimacy is so important, and i know that there are lots of ways to be intimate, as others of yu pointed out. I guess I am just nervous. it all seems so much to deal with. can yu tell i did too much today? i get like this when i get overtired. tomorrow,,,,another day. love susan

kacilee
Posts: 2
Joined: Oct 2000

Hi, this is the first chance that I have gotten to get back to this discussion area and hear all of your replies. I appreciate your thoughts on the matter and some of the practical solutions and ideas. I also appreciate knowing that I am not the only one experiencing this. I do have a very supportive, caring husband who is very patient with me and I am thankful every day that he has been by my side through all of this. I am going to check with my gyn. about some of your suggestions and try them. Thanks again for the support; it helps knowing there are others "out there" going through the same situation. Thanks again, Kacilee

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