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Topic: Survey on Coping with Changes in Sexual Life after BC

Forum: Sex & Relationship Matters —

A safe place to talk candidly about how your romantic relationships and/or your sex life has changed following your diagnosis and treatment.

Posted on: Jan 23, 2018 12:04PM - edited Jan 23, 2018 12:47PM by Moderators

Moderators wrote:

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

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Page 2 of 2 (49 results)

Posts 31 - 49 (49 total)

Feb 6, 2018 06:40PM Outfield wrote:

Well, I'm glad somebody's studying it. It's an imperfect instrument, but at least someone's interested.

When I think about it, I am so angry that nobody warned me what would happen to me. It wasn't on my radar to think to ask - I was too busy worried about dying. Maybe I would've regularly used a dilator if I'd known. At least the ball would have been in my court to do something. I don't walk around bitter and negative, but all the time spent on how to deal with all the other issues, like bone loss, and nobody ever even mentioned what the drugs would do to my sex life.

Feb 7, 2018 05:18AM Momine wrote:

Sara, :D

KB, ditto

Outfield, I also can't help but think that men going through prostate cancer, which does similar things to their sex lives, get better info and counseling than we do.

Dx 6/1/2011, ILC, 5cm, Stage IIIB, Grade 2, 7/23 nodes, ER+/PR+, HER2- Chemotherapy 6/19/2011 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 9/12/2011 Mastectomy: Left, Right Radiation Therapy 1/8/2012 Surgery 3/7/2012 Prophylactic ovary removal Hormonal Therapy 3/31/2012 Femara (letrozole)

Feb 13, 2018 03:50PM Moderators wrote:

Bumping this thread, as they would like more completions (already have 284). Thank you for your help, and inputs.

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Feb 21, 2018 07:50AM - edited Feb 21, 2018 07:51AM by amarantha

I would like to add that, yes, sex is painful now, penetration even with a finger is to painful to contemplate, being touched by the most darling of husbands still feels too uncomfortable to bear. But while the physical difficulties can be helped by lubricants, the real problem is that sex has been amputated from my brain. Enjoying sex - yes I remember it, in theory, but the whole idea of sex has been blurred out. Talk of it now, or tasteful sex scenes in movies on tv, have become annoying and boring, like when they talk about sports on the news, I mentally tune out, hope for it to be over soon. And this from a gal who used to have one of the most tyrannical sex drives ... Luckily my husband is in a similar place at age 81, and is probably somewhat relieved by my lack of interest. On the other hand, cuddling, kisses, touching, rolling together, enjoying physical closeness, declaring our love over and over, that is all wonderful. It is like my whole tyrannical urgent passionate crazy sex drive has moved into my heart.

begin 5 wks rads + weekly Cisplatin, eventual mastectomy, right side. IBC recurrence with mets -bone, skin, lymph nodes (controlled by Halaven) (IBC originally in left breast, heavily treated and removed 2104)

Feb 21, 2018 09:53PM - edited Feb 21, 2018 09:56PM by Sara536

Thank you, Amarantha, That is beautiful! There is precious little talk here about Love. Too much talk of making “Slam, Bam Thank you Ma'am" possible - as if that is all love and sex is!

Feb 22, 2018 12:27AM Outfield wrote:

Momine,

Of course they get more! They're men! I work a lot with men who have or have had prostate cancer. They definitely get warned that basically any treatment they could choose carries the risk of erectile dysfunction.

Feb 22, 2018 03:03AM Momine wrote:

Amarantha, you make some good points, and I am glad that you have such a good relationship with your husband. I am sure your experience of libido loss is not uncommon.

In my case, however, my libido survived just fine. The AI may have something to do with that. Since it prevents the conversion of testosterone into estrogen, I presumably have a fair bit of testosterone floating about, with the result that I ogle pretty boys just as eagerly as I always did :D Problem is, I can't do much more than that.

Outfield, I think there are elements of care that are missing from BC treatment. 1. I think all women who have lymph nodes removed should receive lymphedema prevention and LE physical therapy as a matter of course. None of this waiting around till there is an irreversible problem. 2. Any woman going through this ought to get some counseling about sexual issues etc., as a matter of course. Doctors are not equipped to do this, which is fair enough. But then get someone on staff who is.

Dx 6/1/2011, ILC, 5cm, Stage IIIB, Grade 2, 7/23 nodes, ER+/PR+, HER2- Chemotherapy 6/19/2011 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 9/12/2011 Mastectomy: Left, Right Radiation Therapy 1/8/2012 Surgery 3/7/2012 Prophylactic ovary removal Hormonal Therapy 3/31/2012 Femara (letrozole)

Feb 22, 2018 12:13PM Outfield wrote:

Momine, I absolutely agree with you.

Feb 22, 2018 11:13PM calidancer wrote:

Curious why they excluded DCIS from this survey? We've had many of the same treatments except chemo?


43 at DX. Implants are over the muscle. Ruptured saline expander, 3 months flat. Exchange to silicone. Capsular Contracture at 18 months. Revision at 2 years. Implant was ruptured. Dx 5/5/2015, DCIS, Left, 4cm, Stage 0, Grade 2, ER+ Surgery 6/8/2015 Lymph node removal: Sentinel; Mastectomy: Left; Reconstruction (left): Saline implant, Tissue expander placement; Reconstruction (right): Saline implant, Tissue expander placement Dx 6/12/2015, DCIS, Left, 5cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+ Surgery 10/29/2015 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 10/16/2017 Reconstruction (left): Silicone implant

Feb 24, 2018 07:57PM Moepeanut1324 wrote:

Wow, I've just been dx with bilateral BC. Getting all the prep tests done, then on to some combo of tx which includes a double mastectomy.

I am a very sexual person and my partner and I have enjoyed an active intimate sexual relationship. Since the dx though I have found that she is not do inclined and distant. I have tried talking with her about it, and she excuses it to being tired. If this is happening now before sx I expect there will not be any after sx.

This is extremely hurtful to me and I'm just in the beginning stages yet!

Any thoughts/advice.

Thanks.

Feb 25, 2018 08:34AM Momine wrote:

Moepeanut, sorry you are dealing with that on top of dealing with DX, doctors etc. Why don't you ask if your doc/hospital has a counselor available. For you, I mean, to get some tips on how to approach your partner. It is difficult for partners in many ways. She may be afraid of hurting you, or afraid of losing you.

Dx 6/1/2011, ILC, 5cm, Stage IIIB, Grade 2, 7/23 nodes, ER+/PR+, HER2- Chemotherapy 6/19/2011 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 9/12/2011 Mastectomy: Left, Right Radiation Therapy 1/8/2012 Surgery 3/7/2012 Prophylactic ovary removal Hormonal Therapy 3/31/2012 Femara (letrozole)

Feb 25, 2018 02:47PM - edited Feb 25, 2018 02:50PM by Moderators

Moepeanut1324, indeed, we too are sorry you are dealing with this. A cancer diagnosis really does affect the entire family, and sometimes in ways that are difficult to predict.

If possible, it could be helpful if you can be honest and direct about how you feel, which you may already be doing. Many find it helpful to get help from professionals (e.g. therapists), as needed.

We are here for you Medicating

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Feb 28, 2018 10:27PM Moepeanut1324 wrote:

Thank you for your support. We continue to talk, and yes as it turns out she is afraid of hurting me and in the anger phase of accepting this is happening to me. I do think attending some counseling sessions and support group would be a good idea, for me and for her.

Thanks again.

Mar 1, 2018 01:50AM Momine wrote:

Moe, glad you are making some progress.

Dx 6/1/2011, ILC, 5cm, Stage IIIB, Grade 2, 7/23 nodes, ER+/PR+, HER2- Chemotherapy 6/19/2011 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 9/12/2011 Mastectomy: Left, Right Radiation Therapy 1/8/2012 Surgery 3/7/2012 Prophylactic ovary removal Hormonal Therapy 3/31/2012 Femara (letrozole)

Mar 13, 2018 12:12AM lunamoon97367 wrote:

why does this only involve statge 1-IV why not people that have stage 0 that have BRCA estrogen + Cancer as well. I mean I had DCSI but because i carry the BRCA gene i have had to have a bilateral double Mastectomy done and now have alot of more tests. My sexual drive has gone down since this has happened. So im not sure why stage 0 wouldn't be included in this.

Mar 15, 2018 04:03PM Julia0804 wrote:

Does anyone know if you stop taking AI's will the damage reverse?

Dx 5/4/2017, IDC, Left, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (IHC) Surgery 5/29/2017 Lumpectomy: Left Hormonal Therapy Radiation Therapy Chemotherapy

Mar 15, 2018 10:09PM - edited Mar 15, 2018 10:13PM by Sara536

This Post was deleted by Sara536.

Mar 15, 2018 10:18PM Sara536 wrote:

I deleted my post regarding damage from anastrozol because I realized the question related to changes in sexuality, not arthritis.

Mar 20, 2018 06:54PM Moderators wrote:

Closing this now with 656 completions. Thanks Everyone for filling out the survey, and for your very important comments!

With Gratitude,

The BCO team with the Dana Farber Cancer Institute

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