Let’s Be Frank…

RondaWalker-27Regular LBBC blogger Ronda Walker Weaver is back, and with a topic not many are willing to discuss so frankly…sex. Read what she has to say about this three letter word and her journey with breast cancer…

Sex – the sometimes scary and painful 3 letter word for many of us cancer survivors. I went through surgeries, chemotherapy, radiation, and all of the horrible side-effects associated with these procedures. Nine months of struggling to stay alive, and now a year post chemo, I am just beginning to recognize myself. Sadly, hormones that may benefit our sex drive certainly affect our cancers (love those aromatase inhibitors), in turn affecting our bodies and affecting our libido. The research I’ve read says that about 70% of women who have had breast cancer treatments have some sort of sexual dysfunction, as opposed to 40% of women without breast cancer. Is there sex after cancer? Once intercourse was exciting, exhilarating, yet now I have a “sexual disorder/problem.” And I didn’t bring this upon myself – ahhh cancer, the gift that keeps on giving!

I have an incredibly loving patient husband who has been an amazing caregiver. And he’s waiting for me to give him the “come-here” eye. Most of the time he’s patient, sometimes he’s frustrated. I try to explain to him that my lack of sex drive is complicated. It’s not about him – really, it’s about me – emotionally and physically. But I’m tired of this entire process being about me!

I’m just beginning to be able to look at my body in the mirror and be OK with my reflection. Lopsided breasts, incisions, discolored skin, weight gain, hair loss, gray circles under my eyes – I’m alive, but there certainly have been sacrifices. Sexuality and femininity are both terms I’m having to redefine – and this has had an impact on our intimacy.

From other breast cancer survivors I’ve been told, “One day, it will just all come back, you’ll be surprised, but it will.” And I think – “Time frame, please.” From medical professionals I’m told, “Use it or lose it, you don’t want your vagina to atrophy, thin out, muscles to weaken.” So do I pretend? Do I proceed as if all is normal, hoping that in doing so, my body and mind will respond? Viagra for women?

Now, we do have intercourse, but most of the time my fatigue is so great that I’d rather just go to sleep. And intercourse is occasionally painful, although there are vaginal moisturizers as well as lubricants available (I’m a fan of coconut oil or something without a petroleum or silicone base), vaginal exercises we can all do (remember Kegals?), and there are various dilators, stimulators, vibrators that can help (but even these take energy).

I’ve asked my husband to be hang-in-there while I’m healing, and yet I want him to be passionate as well, not treating me as if I’m a porcelain doll that may break. Yet he worries – he doesn’t want to hurt me!  And so he hesitantly asks, “Do you think we can make love tonight?” And my response is usually, “Maybe,” or, “I’d like to, but I don’t know if I can commit.” “Let’s see how much energy I have.” “How about it the morning (when I seem to have more energy)?” And he waits, and I control our sexual relationship – and although it takes two, I would like to be more willing, more available.

Lately we’ve begun talking about this more openly. It appears to me that we must redefine intercourse – what we had is not what we have, and what we have may be what we get as we move forward. So we have to adapt, rather than wait for that “old-time feeling” to come back. We’re learning how to have passionate moments outside of our bedroom. We’re learning how to cuddle when reading, watching a movie. We’re holding hands more, kissing more, finding moments to say, “I love you” with a clear intention of delivering the message rather than hoping for a romp in bed. I’m learning to tell my husband what touches work, what touches don’t (my erogenous zones and arousal abilities have changed).

So here’s what I am working on:

1. Communicate my fears, desires, to my partner.

2. Work on what I can fix.

3. Exercise, at least 30 minutes a day.

4. Eat foods that help me heal.

5. Be as positive as possible – seeing this as a hurdle rather than a roadblock.

6. Read up on this topic, so I don’t feel so alone, as well as to gain information on how other women are dealing with this. (I like the information LBBC provides here: http://www.lbbc.org/Learn-About-Breast-Cancer/Sex-and-Intimacy-After-a-Breast-Cancer-Diagnosis)

7. Make US a priority.

What works for you? Where are you at on this road to sexual strength?

Ronda is 54 years old. She was diagnosed with breast cancer on Thursday, Sept. 6, 2012. She went through surgery, chemotherapy, and radiation. She teaches folklore and writing at Utah Valley University and works for an online education company, LearningU. She is using her recovery time to read, listen to music, garden, walk, play with her grandchildren, children, and enjoy her dear husband – who has been her pillar of strength through her journey. She also writes her own blog called Folklady’s Adventures.

If you’re interested in more information regarding sex and intimacy after breast cancer please feel free to check out the podcast and powerpoint from our January 20, 2014 community meeting on the topic, led by Beverly Vaughn, MD. 

Also of note, LBBC will be hosting a webinar Body Image: You Are So Beautiful! How to Know and Believe This! On Tuesday, May 20th at noon ET. More information will be available on the LBBC events page (www.lbbc.org/Events) soon! 

18 thoughts on “Let’s Be Frank…

  1. I wasn’t real sure how to start this comment off. I’ll just do it this way…Hi, I’m a 15 year survivor now. So far, so good. My hubby and I have experienced some of the same issues as you mentioned, but they have been on and off. I don’t want to blame “cancer” for all of them, because it has been 15 years AND we have other life factors to consider now. Age.
    That being said, it did take me awhile to get over how I looked after the surgeries. I went through reconstruction, only to lose it a year later due to infection and rejection. But it was my hubby that led me to the stage of acceptance with the repeated verbal compliments, the reassurance that I’m the same woman and the oh-so loving touches during our love-making. It was him that made me see. Once we…or shall I say I, got over myself, the rest came easy peasy.
    I wish you luck and appreciate you sharing your very personal story.

  2. Very good post, Ronda – very frank, as the title promised. The issues you are bringing up ring true for me. Generally speaking my husband and I need to agree a day (or a morning) in advance so that I can mentally and physically prepare myself. That sound silly, but I know you probably understand.

    It’s so good to see this conversation catching on. We’re featuring more resources over at our FacingCancer.ca page, and I keep reading difference experiences (though so much in common) with this issue. I hope with some more sharing this taboo will be busted. Conversation is cure, in this case.


  3. As the husband of a breast cancer patient, I can tell you that the experiences my wife and I had were not exactly the same as yours. My wife had issues of pain and fatigue which affected our intimacy, but she always had the desire for it. There were also body image issues following her double mastectomy. I will admit that it was an adjustment for me, as I know it was for her. However I included sensual touching of her chest even following the mastectomy, and by the time we took our honeymoon trip to a cabin down in Tennessee, she had no trouble getting into the hot tub or shower naked in front of me. Things for us changed, and she didn’t always have the energy for us to make love, so I just left that up to her to decide when we would be intimate. It was frustrating for me at times, but I understood that she had pain and that chemo would rob her of her energy at times. It was not by choice that she wasn’t able to make love as we had in the past, so I never felt rejected. The act of sex for us was always a nearly religious expression of our deep-felt love, meeting each other’s physical needs as a shared expression of emotion. I was caring, and patient, because that is just how I’m wired. I knew she had stage III cancer when I asked her to marry me, but I never even thought of walking away. While I COULD HAVE, that just wasn’t an option for me. I simply loved her , cared for her, and did my best to be whatever she needed.

  4. Those of you who are able to take aromatase inhibitors and still maintain sexual intercourse are blessed. I wouldn’t complain about it not being as wonderful as it once once and be delighted you still can enjoy that level of intimacy. Some of us are not so lucky and at a relatively young age have to accept it as gone forever. To date there are no medical solutions. Enjoy!

  5. I say thank goodness for mornings, lubricants and lots of cuddles to keep things alive… My husband was very scared if hurting me after surgery for uterine cancer… For a time I did not care but missed the closeness …. So we talked and gradually found our way… I believe we are now closer but less intercourse than before but more intimacy!!!!

  6. I was already in menopause and experiencing some dryness when I was diagnosed April 2013 at age 55 with Triple Negative BC. Sadly the estrogen cream that was helpful is no longer an option. Lubricants help somewhat but intercourse is still sometimes painful. My hubby of 35 years has been wonderful. We too are finding ways to enjoy intimacy. Our mantra is as often and however we can. Thanks to all for your honesty and candor. It helps to know it’s not only me and its NOT all in my mind.

  7. From Ronda-

    Thank you all for your comments. I’ve been in Hawaii with my husband, celebrating our 10 year anniversary. We’ve enjoyed the beauty of the island, and most of all, we’ve enjoyed relaxing. With relaxation has come time for intimacy, hallelujah!

    I am Triple Neg, so I certainly understand the “no estrogen” diagnosis.
    What a pain.
    Well – off to the beach (no romping in the sand though)!

    Mahalo – Ronda

  8. I am glad for all of you to have such wonderful husbands and sex again but mine went the opposite direction completely. It gave him the accuse to drink and take happy pills and pain pills and sleep pills to handle this situation. I hear poor me from every human he came in contact with, Oh by the way people, I am the wife who endured all this surgery, chemo and sickness and pain and to be left with a drunken drug addict of a husband.
    Thank God for Family Friends and my Animals I made it threw 4 years and on my own again for the first time in twenty and not feeling sexy in the least bit.
    I am still waiting to have yet another reconstruction surgery because they are not right yet and 2 different sizes so can’t tattoo yet either.

    Think this reconstruction was a waste of my life and time. The thought of another man touching me makes me sick. Why would I want to give another one an excuse not to be there or supportive.
    Haven’t I had enough hell already.

  9. It’s really hard for single women. Divorced right before diagnosis 4 years ago, I have bad fatigue and depression from the aromatase inhibitors, to say nothing if atrophy and dryness! Still, I want a new partner in my life, and don’t have the energy to find one! Thank goodness 😊because though I do have a sex drive, it would be so painful. BTW, my onco uses natural hormone suppositories whic really help. And please don’t forget the other ways to have orgasm!

  10. Best article EVER! Ronda…you captured in words what I have been living through since my diagnosis in 2008. Same surgeries, same treatment, same problems. I have an incredibly understanding husband as well We’ve been together for thirteen years. He’s a widower who lost his first wife to breast cancer. Crazy! I’m 62 years old now, and gave up aromatase inhibitors after three years of trying all of them. I just wanted to thank you for your frankness and for sharing your story.

  11. Your comments are touching. Thank you for sharing with all of us – there is hope, but the journey to full recovery, which includes sexual recovery can be long and difficult. My love to you all – Ronda

  12. Good post but you certainly aren’t alone. I follow many blogs and have came across this quite a lot to be honest. It’s wonderful that your husband is patient and understanding. He sounds like a lovely man. Yes, sexual recovery can be long and difficult but you are a very strong lady to have gone through what you have. I love this quote from John F. Kennedy “We must use time as a tool, not as a couch.”.

    Thanks for sharing this with us. x

  13. This is my biggest fear. I feel like I just got my life back and now I am dealing with this diagnosis. I was in a sexless relationship for way too long.. I have found a wonderful new companion…… and now I am faced with treatment that might affect our relationship. I guess, it is a crap shoot as to what you get. I am just sad.

  14. Becky and Jennie – We are not alone, and many of us are blessed with gentle men who are patient and willing to make accommodations for our lack of sex drive. I believe we likewise need to be patient. My sex mantra is this, “Good things take time.” 🙂

  15. Ronda,

    This post is so open and honest, and frankly we need to hear more on this topic – from other breast cancer patients/survivors, and from our healthcare professionals. I realize there is a fear associated with this discussion for many people, but let’s face it – it’s a common problem and topic that deserves truthful discussion and attention. I am a frequent reader of blogs and information on the LLBC web site, as well as a frequent participant in webinars. Although my background is in nursing, as a stage 1 triple negative breast cancer survivor (2 1/2 years – YAY!), I have difficulty maintaining that professional mentality/outlook when it comes to my own health. I’m simply another patient fighting to survive – and thrive! Finding my way through this new journey, the new me post-breast cancer. I’m as scared and confused as anyone else. But, I read as much as I can from legitimate sources, and there’s nothing more legitimate on the topic of post-treatment sexual dysfunction and problems than listening to other patients describe their personal experiences.

    I was, and still am to a lesser degree, one of those women who found it equally painful (physically), and mentally draining, when it came to intercourse, during and after treatment. I was on HRT for 7 years prior to my diagnosis, so an abrupt discontinuation of estrogen left me dealing with the onset of sudden menopausal symptoms, as well as dealing with cancer treatment side effects. I’ve learned that what works for one doesn’t necessarily work for all, but if we don’t share what works for us, then it’s very difficult to figure out what to try next, after something fails. I am very fortunate to have a husband (35 years) who has, and continues to be very patient and understanding. But, I am still dealing with many of the same physical issues 2 years post-treatment (dryness, painful intercourse, lack of libido, etc.). It’s a struggle, and I hope to continue reading more open, honest conversation amongst us.

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