Survey on Coping with Changes in Sexual Life after BC

Moderators · January 2018

Sexual Self in Survivorship: A Survey of How Survivors Cope with Changes in Sexual Life after Breast Cancer Treatment

Breastcancer.org is partnering with researchers from the Dana-Farber Cancer Institute to survey our community about their experience of sexual life after breast cancer treatment. Take this survey to help us learn how breast cancer affects sexual life and what women are doing to maximize their sexual wellbeing. The results of this research may help guide the development of new coping resources for breast cancer survivors and their loved ones worldwide.

The survey will be available until mid-March. Participants just need to be women, age 18 or older, who have been diagnosed with stage I-IV disease.

Find out more and start the survey here: https://redcap.partners.org/redcap/surveys/?s=E87E8JFNTT

Leilals · January 2018

I just finished chemo and now Im on radiation. Then I told 10 years of Tamoxifen, today by doctor. I read side effects. I've been so positive through the most grueling treatments. Now I don't care if I live anymore.

Moderators · January 2018

Leilals, we are so sorry for what you are going through. Please keep in mind that each drug has its own set of possible side effects, but not every person experiences it the same way, and not every person has every side effect. Hope this helps a bit, and hope you get responses and encouragement from other members soon. The Hormonal Therapy - Before, During and After forum would be a good place to start a new thread and see what others can say about their own experiences with Tamoxifen.

Also, please consider speaking with a therapist and your doctor to get help to ease the feelings of despair/depression. It is a difficult process to finding a "new you" in the treatment and post treatment process, but you really can. Sometimes it takes a little extra help, and please know we are all here for you. Here is a page about treatment for depression, that you may find helpful.

Please, let us know how you're doing, We are thinking of you, and sending you gentle hugs.

The Mods

Michelle_in_cornland · January 2018

Leila, please don't read too much into the side effects of Tamoxifen. I am happier now, than I was before I was diagnosed with breast cancer. And, I take Tamoxifen. Not alot of physical changes have occurred, and I have a great relationship with my husband. My daughter graduated from high school three months before I was diagnosed in 2016. We had an empty nest starting this fall 2017, and we found our ebb and flow of daily life. I find that exercise, a positive outlook, a great hobby, and strong support network help.

Your cancer was caught early, it was only in 2 nodes, and you had treatment. Give yourself time to find your new normal. Ask your doctor if you can put off Tamoxifen, until 1.5 months after radiation. That way your body can recuperate from radiation and chemo. Set up an appt. with a registered dietitian to get on a healthy food schedule. After 5 years of Tamoxifen, they can do a test and see if there is any reason to continue. Sometimes, 5 years is all our bodies need.

Find a counselor that you can work with to set up goals and objectives. The more you work towards those concrete ideas, the more focused and accomplished you will be. That should give you a much needed boost.

ksusan · January 2018

Oh, goody, another study with a heterosexual orientation. Not completed; badly designed.

Moderators · January 2018

ksusan please let the researchers know how they can improve the phrasing, or the survey in general. Thank you!

Momine · January 2018

I do see ksusan's point, but at least the survey tried to go to the heart of the matter, at least from a hetero POV. I just wonder how many BC patients, who have had extensive surgery and especially those who are also on hormone treatment, have anything resembling a normal and satisfactory sex life. The survey does seem to assume that it should be possible, which I find a bit puzzling.

goldie0827 · January 2018

Sex, what's that?

Momine · January 2018

Goldie, kinda my point too.

goldie0827 · January 2018

I think it was the Arimidex that killed it for me and even after going off of it, after 5 years, still NOTHING! Finally my DH is on board and more understanding, but it took several years. Too dry and it's painful, so no thank you!

Momine · January 2018

Goldie, I am a widow, and constantly get asked why I don't get a boyfriend. It is really tough. It is not really fitting to say, in casual conversation, "well, I have no breasts and my vagina doesn't work anymore."

goldie0827 · January 2018

That' funny Momine, but not really. We do have to find humor in some things to get us through. Sorry about the loss of your husband.

Sorry to hijack this thread mods, with some silliness. Feel free to delete

Momine · January 2018

Thanks, yes, you have to laugh, but it obviously sucks all the same.

ksusan · January 2018

I'd be happy to provide feedback, though the last research team whose breast cancer and sexuality survey I responded to got defensive and argued with me, despite my politely-worded and professional communication about how the majority of their questions were about fertility, constructed in a way that suggested that breast cancer rather than being disinterested was the explanation.

I'd love to see a survey like this that had questions phrased so that the data gathered couldn't be misinterpreted. The sexual orientation variable may yield important differences and needs to be considered. For example, when my only option is to tick "no intercourse" boxes over and over again, this a) omits asking questions relevant to my sexual experience; b) is open to the misinterpretation (since sexual orientation or gender of current partner wasn't asked) that I am a respondent with a male partner and we do not have intercourse. "No intercourse (because partner is also female)" and "No intercourse (for some reason, with male partner)" are very different constructs.

Momine · January 2018

ksusan, good points all. It reminds me a little of a survey I was sent, that had to do with weight and diet after a cancer DX. But virtually all the questions clearly assumed that people were overweight and trying to lose weight. I finally had to give up.

Moderators · January 2018

All indeed very good points, and we are sharing them with the researchers ourselves, we've decided. So, thank you.

p.s. humor is always good!

Sara536 · January 2018

Maybe Dana-Farber and BCO should consult an outside research group to help design a new questionaire. An unbiased one that allows for findings they didn't anticipate ahead of time. Would it be a total surprise IF it turns out that the majority of patients are not able to find an acceptable "new normal"? What if it turns out that only 25% comply with doctor's orders for AIs? Will that make any difference in research objectives? What percent of treatment is designed to please male partners? (as evidenced by reports of plastic surgeons turning to the husband and asking, "what do you want: B, C,...or DD?" When I read people's experiences with reconstruction, I am often horrified by what some have had to go through. And resurfacing the vagina so that sex is less painful? Is it really possible for a “counselor" to help anyone develop a positive attitude towards any pain in that area?

Some women have wonderful partners in their lives who's interest in them is not totally focused on how closely they resemble the 20 year old they married. Others have partners who walk rather than be supportive emotionally. Will the survey be able to handle the very many variations of the truth? "Can grief be measured? I hope there aren't too many questions that have to be answered with sometimes, never, always, etc.

It might be necessary to have several very distinct subject sections in order to get accurate results. I'm so very glad you're doing this but I think it is a much more complicated undertaking than you originally imagined.

PS: Why do you say that there is "a small risk of potential loss of confidentiality” and why do you ask for precise birthday?

Sorry about the bold type - it seems to happen often when I paste in comments. I can't figure out how to change it. It's not meant for emphasis.

Moderators · January 2018

Hi Everyone, the researchers at Dana Farber relayed these responses, and will be addressing a few other points tomorrow:

_________________________________________________

Thank you so much for sharing these helpful comments.

We did try to consider how best to word the survey to be inclusive of the experiences of women of every sexual orientation.

We are excited to be using one of the most widely used, validated measures of sexual functioning called the Female Sexual Functioning Index (FSFI) because it will allow us to compare our results to findings within different populations. Any woman, of any sexual orientation is welcome to answer these FSFI questions (#16-36). Before diving into the questions, we hoped to make this clear by defining the terms we would use in the scale. For instance, we say "sexual activity can include caressing, foreplay, masturbation and vaginal intercourse." So, for each question that asks about sexual activity, women's answers can relate to many types of sexual behavior, not just intercourse. In fact, every question that asks about intercourse also asks about sexual activity, so that women with partners who are male, female, or both can reflect on their experience. Here is an example, "Over the past 4 weeks, how often have you been satisfied with your arousal (excitement) during sexual activity or intercourse?" Women who have not had intercourse but have been sexually active in other ways can feel free to answer these questions with the full range of response options. Otherwise, each of these questions includes an answer option that reads "no sexual activity" so that participants who have not experienced ANY caressing, foreplay, masturbation, OR vaginal intercourse during the past 4 weeks can check that box.

To Ksusan's point, for the questions that ask specifically about pain from vaginal penetration, women who do not have male partners do not have to select the answer option "did not attempt intercourse." Instead, they are welcome to answer these questions by referencing their experience of pain from ANY vaginal penetration by toys or fingers, etc.

We are looking forward to hearing from a diverse group of voices. Our survey questions use the term "partner(s)." Since participants may have multiple partners of different gender identities, we do not ask the gender of their partners. Instead, we ask participants to self-identify their sexual orientation in question #40 since this may be more reflective of their feelings and overall sexual behavior.

Briefly, to Momine's point: we do believe that a fulfilling sex life is possible during and after breast cancer treatment. Treatment impacts everyone differently - some women have more sexual side effects than others, and some have none. It is our hope that this study will provide a window into this range of experiences women that can have in and the ways in which they have coped with sexual side effects, when they do come up.

The Dana-Farber team is excited to be working on this as our first sexual health survey within the Breastcancer.orgcommunity. It is not intended to be comprehensive. Sara raises some great points that could be explored in a follow-up survey about surgical decision-making, body image and how partners' perspectives influence survivors' sexual wellbeing overall. Others raise great questions as well.

Please feel free to continue sending them our way!

Moderators · January 2018

And one more comment:

We would like to follow up on Sara's last post, which asked "Why do you say that there is "a small risk of potential loss of confidentiality, and why do you ask for precise birthday?"

Confidentiality: Only the Dana-Farber study team can access the secure, HIPAA compliant, online survey platform where your responses are stored. We make every effort to protect the privacy and security of all your answers, but we cannot guarantee this completely, so we let you know that there is a small risk of loss of confidentiality. Additionally, to protect you, our analyses will all be done at the group (not individual) level. All summary data will be shared, without identifiers, with the Breastcancer.org research and management team. We may also share this de-identified data with the sponsor(s) of the study, and its subcontractors.

Data on age: Before starting the survey, we need each responder to confirm that she is over 18. We also ask for a precise birthday so that, for people who complete the survey, we can look at potential differences in experiences and survey responses by age or age group.

ksusan · January 2018

"To Ksusan's point, for the questions that ask specifically about pain from vaginal penetration, women who do not have male partners do not have to select the answer option "did not attempt intercourse." Instead, they are welcome to answer these questions by referencing their experience of pain from ANY vaginal penetration by toys or fingers, etc."

a) One is to infer this?

b) While I recognize that many people like to have intercourse, separating it out as a distinct activity suggests that it's the real thing and the rest is some sort of inadequate messing around. Cf every feminist book on sexuality beginning with Our Bodies, Ourselves.

c) Context didn't always make it clear in this study whether "masturbation" referred to a solo or a partnered experience.

This reminds me of the nomenclature/question focus problems in a lot of early HIV research. We had to come up with the term "men who have sex with men" rather than "gay or bisexual men" because people didn't see themselves as belonging to those groups. I still have to correct materials when I teach because they refer to "heterosexual intercourse" rather than "penile-vaginal" intercourse.

Momine · January 2018

Ksusan, agree with you on point C. It was not clear at all. As for point B, in all fairness, inability to endure penetration is one of the most common SEs of breast cancer treatment, so it does kinda make sense to have a number of questions about this.

For the mods/Dana Farber people, you say:

"we do believe that a fulfilling sex life is possible during and after breast cancer treatment. Treatment impacts everyone differently - some women have more sexual side effects than others, and some have none. It is our hope that this study will provide a window into this range of experiences women that can have in and the ways in which they have coped with sexual side effects, when they do come up."

Sure, if you include people with DCIS, people who do not take AIs, people who do not have their breasts amputated or badly reconstructed. In other words, if you include the entire range of folks who go through breast cancer treatment of some kind, I am sure that a percentage of them manage to have satisfactory sex lives, mainly because they do not receive treatments that seriously interfere with sexual functioning.

If, on the other hand, you are talking about the population that 1) is on hormonal treatment and 2) have had breast amputation (with or without reconstruction, because from what I can gather, recon may help when you are dressed, but in a nekkid situation, not so much), I am hard pressed to understand what you base this belief on.

Sara536 · January 2018

How about a question to find out how many medical oncologists even warn their patients about sexual discomfort when they prescribe AIs? Many women on AIs were initially told they were so lucky to have hormone positive breast cancer because there is treatment available. Not all women have done their own research or even know about BCO forums early on in their BC experience. We hear about “slight risk" of heart attack, stroke, and blood clots, more risk of muscle and joint pain, but did your MO mention 99% risk of painful intercourse? I can understand that they may be trying to avoid the power of suggestion, but what it comes down to is that they are minimizing and avoiding something very real. From reading various threads on BCO, I get the impression that many MOs just refer those questions and problems back to your regular gynecologist. They wash their hands of any responsibilty - wouldn't want to be the bad guy! Mine told me that since I had breezed through menopause, I probably wouldn't have much of a problem with muscle and joint pain and then expressed surprise verging on disbelief when I did. Maybe I shouldn't expect any compassion or commiseration but I do think we deserve “truthyness"! That is a requirement for the development of trust.

Momine · January 2018

Sara536, for sure my docs didn't warn me. However, it wouldn't have made a difference anyway. I prefer being alive, so I take my pills like a good girl. Also, I do feel fortunate that it has been possible to keep me alive all this time, in spite of a rather nasty DX.

It just irks me, when there is also this expectation that I am supposed to have a super-duper sex life and if I am not, I must not be trying hard enough. It seems a bit like telling a paraplegic that if he just wants it badly enough, he should be able to walk.

I can also see how a cancer patient in an already established and good relationship might a bit more easily be able to find a mutually satisfactory way forward in the sex department, in spite of the impediments. Although I have talked to many women (and to men who have been through prostate cancer treatment) for whom that has not been the case.

But as a breast-less widow of a certain age, but not so old that I am interested in having an 87-yo boyfriend, it all seems fairly impossible. Which is unfortunate, but OK, as long as people don't keep insisting that I am mistaken. And yet they do, at dinner parties, at the office, at the doctor's office and now here as well.

rainnyc · January 2018

I'm heterosexual, and I have to say I was as disturbed by aspects of the survey as others who've responded above. It seemed very keen on medicalizing sexuality, and quite unaware of aspects of sexuality that might be unrelated to actual intercourse.

I've had some experience with survey design, and I think it was just very poorly designed.

If the point of the research is to investigate changes in vaginal intercourse due to the side effects of AI/Tamoxifen treatment, then many of the questions make sense.

But there were no questions about the effects of surgery on the sexuality of the breasts, either in terms of their being an erogenous zone or in terms of long-term movement restriction or pain in that area. There were no questions about how radiation might affect one's sensitivity in that part of the body. There were no questions that distinguished between sexual activity during active treatment for breast cancer, i.e. during chemo/surgery/radiation or after treatment, and about the time lapse between treatment and resumption of sexual activity, for those who stopped during active treatment. In other words, many of the questions were about sexual activity during the past four weeks, but there was no attempt to ask if the last four weeks included active treatment, or if not, how far in the past the active treatment had been. That makes a difference, i.e. it takes time to heal from various aspects of treatment, like surgery and radiation, or to recover from chemo-induced fatigue. Even something as simple as hair growing back might affect one's sexuality!

To be completely honest, I think you should scrap this and try again!

Moderators · January 2018

Thank you for this discussion. We are passing everything along to the researchers, and appreciate your frankness.

ksusan · January 2018

Not to mention the effects of practicing LE prevention on sexual positioning and preoccupation.

Molly50 · January 2018

"Not to mention the effects of practicing LE prevention on sexual positioning and preoccupation." YES!! This and just pain from mx and recon in general make positioning very challenging. I am lucky my DH is a patient man. Once I healed from all my surgeries we tried to change positions but I can't stand to be touched in certain areas. It hurts too much. I mourn the loss of my breasts. Yes, I am thankful for the AI's but I curse them at the same time.

Momine · February 2018

Ksusan & Molly, I can easily imagine. Kinda rules out most chapters of the Kama Sutra

Another, albeit minor, impediment, ridiculous foot and leg cramps from the AIs can really "cramp" your sexual style.

Momine · February 2018

Rainnyc, I have also noticed in a lot of the advice and discussion of this issue, that often "success" seems to be defined as "possible to have vaginal intercourse." No mention of whether it is sexually satisfactory for the woman. It often seems to be mostly about keeping a husband happy and getting through it without excruciating pain and tears.

Moderators · February 2018

245 people have completed the survey. Thank you! The researchers would like around 500. We greatly appreciate your feedback here in the thread, and responses on the survey!

Sara536 · February 2018

I would hope, that when this survey is completed, that it be distributed along with an accompaning collection of excerpts from 1st person descriptions of sexual experience taken from this website. That is the only way to end up with a useful document. It would be like the difference between a multiple choice exam and an essay exam. Which one demonstrates the student's understanding of the subject matter better? It might be time consuming and painful to read, but it appears that many MOs are in serious denial about the side effects of the care they provide. It is understandably easier for them to follow the “standard of care" directions after ticking off the patient's “numbers" on a flow chart. Why not just feed those numbers into a pharmacy's computer, mail the drugs to the patient or send them to an infusion facility and dispense with MO's altogether? Why support the expensive middleman/woman? Then, if the goal is really to help the patient, use the money saved to provide acupuncture, psychotherapy, etc. without making those things an extra expense for the patients (and available only to these who can aford it).

There I go again...sorry.

Survey on Coping with Changes in Sexual Life after BC

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