Sex and Sensibility

It was recently, and rightly, pointed out that there is scarce information in the blogosphere about the sexual and intimacy issues that so often arise during, after, as a result of a breast cancer diagnosis and/or treatment. And even fewer places to discuss it frankly and openly. It was a point well taken.

Brenda had a post a number of months back: What Your Oncologist Doesn’t Tell You About Sex, but I’ve seen little else on the subject. And if our oncologists can’t acknowledge that breast cancer impacts our sex lives, who are we to bring it up? I mean, it’s probably just “me” that’s having an issue, right? WRONG

While I would argue that we, Americans, are fairly uptight about sex, the fact is that the group of breast cancer bloggers I’ve come to know are a pretty outspoken bunch, and seem to fear almost nothing. And yet we still don’t really talk about sex…

It is entirely possible that none of us have had any “sexual side effects” from the physical and emotional onslaught of cancer, but I don’t think so. Just for fun, please take the ANONYMOUS poll below, and let’s see just how many of us have or do feel that breast cancer effects our love life.

Talking about WHY there is so little discussion about sex and breast cancer is still not really talking about it, of course. So here goes:

There are so many areas of our sexuality impacted by a breast cancer diagnosis, and in the throes of diagnosis, decision-making and treatment, sex tends to end up as a not-so-significant priority. And I think many of us get that, as do our partners. But I would argue that something very important is lost: not just sex, but intimacy. No matter your stage, histology, prognosis, etc, the first few weeks after being diagnosed typically FEELS life-threatening. I remember being able to do little beyond sitting at the computer researching and crying. I was so consumed with this “death sentence” that I didn’t know how to reach out to my husband…either to reassure him, or to be reassured by him. This was happening to ME, not to us. And I was wrong. Yes, I know its natural and that the decisions I had to make were critical and time-sensitive. He knew that too. But the opportunity to connect with one another, to recognize that OUR lives were changing in profound ways was lost.

Treatment. During treatment I was far too sick to think about sex. But I missed the boat here too; I’m pretty sure it wasn’t about the sex for either of us; it was about intimacy, connection. I’m not saying there wasn’t intimacy, but rather than pulling away I could have been more open to letting him in closer, if for no other reason than needing the kind of support and reassurance only a partner can provide, and he probably needed that reassurance too. But being thrown into premature menopause can be overwhelming, and when you’re focused on taking the antiemetics, getting enough sleep, rearranging schedules…when getting to the market or picking up the kids is sometimes more than we can handle…it’s hard to put intimacy on the “to do” list, especially if we fail to see how much WE as patients need it!

Surgery. There is so much more wrapped up in breast surgery than we can possibly realize when we are deciding, scheduling, planning. I recall being so focused, understandably, on getting the cancer out of my body, that it was hard to realize what else is being lost, especially having had bilateral mastectomies. I was being disfigured, amputated. The part of me bound inextricably with the first signs of my journey to womanhood, with sexual pleasure, with intimacy, with nurturing my son…was diseased, deadly, and being summarily cut off. I’m not sure it was possible to foresee the impact this would have (and neither, I think, could my husband). Even after reconstruction, my breasts had gone from erotic to an on-going reminder of cancer.

Menopause. It started with treatment inducing a chemical menopause. At 35 that was hard to take. Sure, I could have been more proactive…sought advice from doctors, more medications, more interventions. But I just didn’t want to. I was tired of doctors and chemicals. So I just dealt with it. I dealt with the pain, tried to hold back the tears and, as so many women do, “do it for my husband.” Oh, and the hot flashes! Having to stop everything to cool down, at risk of losing the mood, which was often pretty darn hard to find in the first place. At least until my periods came back, and then…

Birth control. Birth control pills are often the first things to go after a breast cancer diagnosis. Last thing we need is more estrogen! IUDs contain hormones as well. And with challenges like vaginal dryness and thinning membranes thanks to chemo and drugs like tamoxifen, condoms can be problematic. Then, remember, after my periods came back, I remember being terrified that I might get pregnant and the incredible fears about the amount/impact of those hormones on my system. So unless you feel great about barrier methods or one of you is willing to have surgery, there is incredible fear and anxiety over intercourse…and that’s not really good for your sex life.

Endless challenges…my experiences alone, but I am sure there are other challenges that women experience every day. From wanting to just forget any of it happened and being utterly unable to do so, to finding it hard to be “in the mood,” to feeling inadequate, to wondering if your partner finds you “ugly,” to finding a partner if you’re single. I would bet the list is endless.

As I mentioned earlier, one of the most heartbreaking impacts of breast cancer is not just the impact on our sex lives, but the intimacy that comes with it. We are still sexual beings, and there is no reason that our sexuality should die because of breast cancer, nor should we deny ourselves other earthly pleasures because of a diagnosis. We’d never give up chocolate, right?

If you’ve blogged on the subject and I missed it, my apologies. PLEASE add your link in the comments! In general, I’d love to hear your thoughts and experiences. I think they can help everyone, if for no other reason than to know none of us are alone in this. Please consider sharing where you’ve been and what you’ve found to be helpful. Feel free to post anonymously if that is more comfortable for you, but let’s lift the sense of “shame” and start helping one another!

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25 Comments (+add yours?)

  1. chemobrainfog
    Jun 11, 2012 @ 14:06:41

    I love that you had the ability to put this into words and the courage to do just that….. While I’m pretty much an open book, this is one aspect of my life that has been kept under wraps. It isn’t because I don’t want to share, at this point in my life it’s not appropriate to share. My marriage began unraveling in August of 2010 and I still reside in limbo. I straddle the line between married (on the weekends) and not too sure what the hell is going on (during the work-week). We are still “figuring it out” and I’d invite any Vegas oddsmaker to analyze and give me the over/under.

    Great post, as usual, as ALWAYS…

    xoxox

    Reply

    • Lori
      Jun 12, 2012 @ 09:42:53

      We all have our moments. What is probably most important is that we deal with them, not that we share them with the universe! Always here for you! XOXOX

      Reply

  2. Facing Cancer (@cancer2gether)
    Jun 11, 2012 @ 15:45:57

    Taking your poll, 100% of respondents have been impacted sexually through treatment. For such a HUGE majority (like, 100% majority) it’s amazing there’s not more on this topic. Several months ago our blogger Bumpyboobs wrote a frank post about her sexual experience post-treatment, and how she was overcoming those obstacles. You are welcome to read/share/comment. Here is the post:

    http://www.facingcancer.ca/bumpyboobs/2011/08/10/sex-after-cancer-how-we-coped-with-the-difficulties/

    (She’ll also be featuring this story in our soon to launch anniversary edition of the Lives Affected By Cancer)

    Reply

    • Lori
      Jun 12, 2012 @ 09:44:10

      Thank you so much for sharing!! And your right, it’s quite amazing that something so integral to who we are gets brushed under the proverbial rug.

      Reply

  3. Jan Baird
    Jun 11, 2012 @ 16:12:36

    I’m glad you tackled this still-taboo subject. I’m with Anne-Marie; I’ve had to keep my intimacy problems mostly under wraps. The closest I’ve come to broaching the subject is in my blog post for Valentine’s Day 2012: http://janhasak.com/blog/?p=1110. I do applaud Brenda and you for mentioning the unmentionable. It MUST be discussed. I’m just not the one to trumpet it at this time in my life.xx

    Reply

    • Lori
      Jun 12, 2012 @ 09:46:08

      Heading to your blog post in a bit, Jan…thanks for sharing! As I said to AM, there are always special circumstance. Heck, how many people do you know who can’t talk about sex at all…never mind the mess that breast cancer makes of it so often.

      Reply

  4. Marie Ennis-O'Connor (@JBBC)
    Jun 12, 2012 @ 04:27:09

    Thanks for writing about this Lori. I will write about my miscarriages, my struggles with infertility and depression quite freely on my own blog, but sex is something I cannot bring myself to discuss openly…I am glad to know I am not alone in this, but also glad to have writers like you who are not afraid to tackle it. Well done!

    Reply

    • Lori
      Jun 12, 2012 @ 09:47:49

      Well, in this community we’re NEVER alone! But I completely understand; it’s been 10 years for me and quite a bit of water has passed under the bridge by now. Thanks for sharing!

      Reply

  5. Jen (Sturtevant) Meus
    Jun 12, 2012 @ 04:55:11

    I think you wrote so amazinginly well on this topic and as usual, in general. It speaks to your story and general possibilities as well. And I thank you to giving voice to the topic! I think that when a person is in a monogomous relationship (marriage or otherwise), talking about sex and intimacy exposes ones partner too. For those in a “rocky” relationship (as mentioned by a fellow blogger) or those feeling like so much else of their relationship has been on display, thanks to situations brought on by cancer. Experincing problems & challenges w/intimacy or the lack there of it, impaired as it might be, it is still sought out to be just that. . . Intimate (to me has a level of privacy as a characterisic making it intimate, between two people, even if only durning the moments it was felt). To expose that even w/a partner’s consent could potentially undermind the very thing trying to be addressed in a private relationship. These are some of my hypothesis and anecdotes for why our community doesn’t share, doesn’t blog about etc. Although I am certain there are other factors too, for me and through comments thus far I am sensing something similar as a primary motivation (to keep our otherwise less private lives private).

    Reply

    • Lori
      Jun 12, 2012 @ 10:07:49

      You make excellent points, Jen. And talking about it is not for everyone, but I also fear that people are afraid or uncomfortable speaking about it, even in the privacy of their own bedrooms. THAT is the part that concerns me!

      Enjoying all your comments on the blog…I’m so glad you’ve joined the conversation!

      Reply

  6. Jacques
    Jun 12, 2012 @ 04:58:08

    Excellent post Lori. As you noted Americans are already up tight about sex so when it comes to women having breast cancer and having to handle not only their trauma but their husbands and family, the house, their work, etc…

    I simply do not know why it is so hard to discuss sex on blogs..

    Reply

    • Lori
      Jun 12, 2012 @ 10:09:35

      Hi Jacques. As is indicated in the comments, there are all sorts of reasons we don’t talk about it. Part of it that crosses nationalities is that we STILL attach shame and blame to breast cancer, and for many women there is a latent, subliminal sense that not only have they gone and gotten breast cancer, but they’ve also messed up their relationship.

      Reply

  7. Holly
    Jun 12, 2012 @ 08:12:32

    Thank you for posting so openly and honestly. When i was diagnosed in 2007 I was in a 14 year love relationship. I raised the issue of sex and intimacy with hm as I/we embarked on this journey through uncharted territory. He dismissed my concerns. I told him that I thought I might not be interested in sexual intimacy during my treatment and recovery. He would not discuss the issue with me. I should have been more persistent, but I had bigger things (like survival) on my mind. He was present, supportive and compassionate throughout my treatment. On the weekend of my final radiation treatment he told me he had ‘found someone else’ and had been involved with her for several months. I was too ‘out of it’ to have noticed or even thought about that as a possibility. It ended up that he did not stay with that women – he had lied to her telling her we were no longer together. He quickly found someone else – 20 years younger than we were, and married her. I cannot begin to explain the depth of my sense of betrayal and shock. I was devastated. I had lost my sense of well-being in the universe, my health, my body parts, my physical and emotional strength, my love relationship… all at once. I am five years post diagnosis and have recoverd, for the most part, physically, emotionally and spiritually. I do not feel hopeful about finding romantic love in my life ever again. This makes me very sad at times.

    Reply

    • Lori
      Jun 12, 2012 @ 10:12:15

      Oh Holly, thank you so very much for sharing. I am so sorry for what you’ve been through. I am forever amazed by the number of women I’ve encountered who have experienced similar responses from long-time partners. I wish I could understand what makes some able to be there through thick and through thin, and some who bail. I hope you keep searching for just the right person, and that he finds you soon!

      Reply

  8. BreastCancerSisterhood.com
    Jun 12, 2012 @ 08:43:02

    You’re preaching to the choir! Sounds like personally, we’ve all sung the same melody. Actually, I’ve written about sexual issues about half a dozen times, because I have no qualms talking about anything. It’s too bad our physicians aren’t more comfortable in this area.

    Reply

    • Lori
      Jun 12, 2012 @ 10:14:56

      I missed the earlier ones, Brenda. Please feel free to add the links here! It is odd that, with ALL of us struggling, it is kept so quiet. I suspect that most docs wait for the patient to address the issue, and that their true discomfort is not discussing sexuality with their patients, but initiating the conversation. That said, I also believe that it’s not ok…sexual side effects/impact of treatment should be brought up with all the other side effects. Doctors can and should help normalize what we go through, rather than leaving us feel we are the “only one.”

      Reply

  9. rannpx3
    Jun 12, 2012 @ 13:04:48

    I had cervical cancer at 26 (I’m 55) and I can relate to many of the comments here. It’s very moving to read them. I think it’s decent to protect a partner online by being silent. It’s healthy to bring it up though. The problems are real, and they do affect us in toto. The “survival” mode at first is so real, I dont think anyone but us really can understand that. I honestly don’t think Oncologists will ever care about this. They are single-focused. My belief is that every doctor’s office should be set up to treat or refer for treatment, that part of the person that needs it. We should never be left without the knowledge to be able to function wholly as a human being. I have an article on my site, it’s a book review about this very subject. The authors sent me the book, I read it, and would recommend it to any cancer survivor-even guys. It was the husband who had the cancer and their struggles sexually. They eventually started support groups for sexuality/intimacy support. They are available via Skype if you need help from them. Their names are Ralph and Barbara Alterowitz, the book is The Loving’ Ain’t over for Women with Cancer. They are now on Twitter @renewintimacy.

    And for the record, I’m twice divorced, and broaching the subject with a date/partner scares me to death. I so feel the same way as another responder does. I’m so sorry, I feel your pain. Some things I’ve done well, others-not so. Knowing I’m not in this alone does help so thanks everyone.

    Here is link to my home page. Book review is still featured: http://cancer.bellaonline.com/Site.asp
    Thanks for the great post! Xo

    Reply

    • Lori
      Jun 12, 2012 @ 16:16:29

      Thank you so much for both your touching response and the new resource! I hope others can take advantage of that.

      I also think you are right about so many things you mention. There is the ongoing need to protect our partners. However, as in so many ways, we sometimes offer that protection at our own expense…just another way of “blaming the victim.” I certain agree that baring it all on the Internet is not a necessary piece of figuring it out, but taking about it us!

      Two random thoughts that came to me in reading your comment:

      1) I have been asked about my willingness to help someone post anonymously so that her story can be a part of the conversation while still protecting her partner…I answered with a resounding YES and would be happy to do so for others as well.

      2) Oncologists: I agree, they are and likely need to be singularly focused. But what if every cancer patient/couple/family were offered a couple of sessions with, say, a social worker whose job it was to say “We often see these kinds of problems; I’m here to discuss them or anything else on your mind with any/all/both of you”? That could be so impactful!

      Reply

  10. Mom
    Jun 12, 2012 @ 21:06:59

    Could you be more open? God, I’m so proud of you.

    Reply

  11. pinkunderbelly
    Jun 12, 2012 @ 21:41:48

    Beautiful post! So interesting to hear everyone’s comments about this topic. I’m about as open as it gets in my posts but don’t write about S-E-X because that’s one area of my life I want to keep private, for the hub’s sake. He’s endured so much in this “journey” that the last thing he needs is to read a post about all the reasons he’s not getting any! I’m fortunate that he’s understanding and that both my oncologist and my OB-GYN have been pro-active about confronting this issue. I’m really glad you wrote about this topic.

    Reply

    • Lori
      Jun 12, 2012 @ 22:51:58

      Thank you, Nancy. I have a habit of saying the things other people don’t say. I’m also very lucky to have a husband who has stood by me every step of this journey, and who recognizes that sometimes we have to pay it forward, even if it’s out of our comfort zone. If I can give voice to even one person who is struggling, it’s worth it! That said, I completely understand the need of many for discretion. I’m really glad you have a medical team that is stepping up in support of you! Hugs…

      Reply

  12. Jody Schoger (@jodyms)
    Jun 15, 2012 @ 17:54:27

    One of the most informative talks I’ve ever heard was last year at the Breast Health Collaborative of Texas’s annual conference. This physician just laid it on the line, what works, what doesn’t, and what you can do. Women have various levels of comfort discussing sexual issues and I completely honor and respect this.

    For great information go to: http://thesexualhealthcenter.com/dr-krychman/ Dr. Krychman was an excellent speaker and very approachable (that doesn’t quite come across from his web site. He is in California and I would highly recommend him to anyone looking for additional information. I also have some references from MD Anderson if you’re compiling some, Lori).

    So many people mistake the difficulties in intimacy specifically to the loss of the breast itself. That is just a small part of the equation, in my experience. The larger issues are establishing comfort in a body that has been altered surgically and hormonally from estrogen-lowering therapies. When I asked an oncologist about this he was very helpful and I’ve noticed that the nurse practitioners that now follow me in the survivorship clinic are good about answering any questions. There are a few – not all – who even specifically ask, “how’s sex?” That needs to be part of each woman’s survivorship plan. Without some preparation, too many women come to a rude awakening and that isn’t fair.

    Thanks, Lori. This was great.

    Reply

  13. The Accidental Amazon
    Jun 27, 2012 @ 21:27:34

    It always strikes me as remarkably and horribly ironic that there is this hideous sexualization of breast cancer out there in the so-called breast cancer awareness movement, and yet this dearth of useful information about breast cancer’s impact on our sexual intimacy. Amazing, isn’t it? One of my first sister friends in cyberspace is a woman named Gina Maisano who wrote a book about this a few years ago, called Intimacy After Breast Cancer. Here’s a link:
    http://nosurrenderbreastcancerhelp.org/Book/Intimacy%20After%20Breast%20Cancer.html

    Reply

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