Sexual Wellbeing and Intimacy (Seeking breast cancer survivor feedback)

KymBKymB Member Posts: 105

Hello BCNA Members

My name is Kym and I’m a breast cancer survivor and a BCNA Consumer Representative volunteer. I have been invited to be a panelist for a psycho-oncology seminar, for medical professionals and medical students, to be held at the Peter MacCallum Cancer Centre. The topic for the seminar is Sexual Wellbeing (during and after cancer treatment) and I will be speaking in the context of breast cancer. The other panelists consist of a consumer/patient advocate speaking in the context of prostate cancer and three medical professionals who deal with sexual health and intimacy.

As well as discussing my own experience, I would like to offer feedback from other breast cancer survivors. As such I’d be interested to hear from breast cancer survivors (women and men) in respect of the questions below.  


1. Did any member/s of your medical team (GP, Surgeon, Oncologist, Breast Care Nurse, Psychologist, Other)
PRO-ACTIVELY approach the topic of sexual health with you? 

- If yes, did you find it helpful and why?
- If no, would you have liked one or more of your medical team to open the discussion of sexual health with you?

2. During or after your breast cancer treatment, what MOST negatively impacted your sexual intimacy? (e.g. hair loss, body image, other?)

3. If you were to provide feedback to any of your medical team, about how they handled the issue of sexual health and wellbeing with you, what would it be? 

Your identity WILL NOT be included in any part of my presentation.   

I realise this can be a very sensitive subject, so please feel free to private message me, if you prefer.  Please post or message any responses by Friday 15th February 2019. 

Thank you in advance for your feedback.  
Kym


Comments

  • SoldierCrabSoldierCrab Bathurst NSW Member Posts: 3,012
    hi @KymB
     
    It might be worth also putting this in the Lets talk about Vaginas group ? 
    are you a member ? 

  • KymBKymB Member Posts: 105
    Thanks  for the suggestion ''SoldierCrab' - I'm not a member of the 'Let's talk about vaginas' group. I'll see if there is any way I can post to it.
  • SoldierCrabSoldierCrab Bathurst NSW Member Posts: 3,012
    you can be a member I will send you an invite 

  • SisterSister Adelaide Hills, SAMember Posts: 3,433
    @KymB ; I actually brought it up with my oncologist during chemo as my libido had left the building.  He was open to discussion and said that it was a common issue but one that many women were uncomfortable bringing up.  I suspect I jumped the gun on the discussion that probably would have occurred after chemo when I was about to go on Letrozole.  The oncology practice has actually appointed a Sexual Health Consultant as they recognise the issue.  My libido has returned a little but nowhere to what it was before.  Is that the dramatic lack of oestrogen or just age?  I officially went through menopause just before I started chemo.  What has amazed me is the surprise from some general medical practitioners that AIs cause vaginal dryness (in fact most have no idea what they are) and I suspect the same practitioners are probably as ignorant about the effects of menopause.  I know medicos can't know the symptoms of every drug but if BC effects 1 in 8 women and AIs are a fairly common treatment, it seems bizarre.  I am happy to answer any other questions if you have them through pm or the vagina group.
  • KymBKymB Member Posts: 105
    Many thanks to those who have responded and private messaged me. Much appreciated. Thank you!
  • iserbrowniserbrown Regional VictoriaMember Posts: 3,137
    @KymB ;
    in response to your Question 1
    Did any member/s of your medical team (GP, Surgeon, Oncologist, Breast Care Nurse, Psychologist, Other)
    PRO-ACTIVELY approach the topic of sexual health with you? 

    for me personally the focus only ever was on the Breast Cancer and the best treatment surgically.  Once that part was complete it then moved to Oncology. Being Hormone Receptor Positive the question was then around gynaecology health not sexual well being or otherwise.  I was then sent to a Gynaecology Oncologist because as time went on tamoxifen brought on tamoxifen induced gynaecology problems which involved 2 surgeries over a 2 year period.
    My opinion only, sexual well being has not been mentioned;  I assume if I brought it up it would be a conversation, then again what is the saying assumption is the mother of all stuff ups!
    I agree with @zoffiel google research (not always true and correct but sometimes from here our only resource) seems to treat sexual well being as emotional for female  and intertwined with menopause and the fact that not all sail through menopause smoothly, but actual sexual function or dysfunction a real problem for men but not defined as such for women.

    Interesting topic and best wishes with your presentation

    Take care

  • iserbrowniserbrown Regional VictoriaMember Posts: 3,137
    Oh love to be a fly on the wall at this conference - it would be interesting

    Look forward to a review of the day, if possible

    Best wishes
  • UnicornkissesUnicornkisses Central CoastMember Posts: 400
    No, no member of my team brought up the subject.
    I was already under going treatment for vaginal dryness and atrophy prior to my hormone positive breast cancer diagnosis and was on Estrogen cream and HRT for debilitating hot flushes and vaginal atrophy which was causing urinary tract problems. I guess for that reason the GP may not have brought it up?
    I am quite okay with bringing up the subject myself and feel quite comfortable discussing it with my GP and Oncologist when I don't have other more pressing issues to deal with in my appointments.
    I would like to know what possible options there may be for someone with my history as the vaginal dryness on Femara is causing significant health and emotional issues. 

    The biggest impact has been loss of sensation and pain on intercourse. The fear of pain kills what little desire I can manage and even when we do manage to have intercourse, the lack of sensation is extremely disappointing. Even touch is painful around the vaginal area.

    I would have liked the subject mentioned as a common side effect of treatment, as much as to help me feel that I was not alone in this, and if there are any possible treatments that may help, to be advised of what they are. I got information about good lubricants and the possible use of topical anaesthetic gel from lovely ladies on this site, but a knowledgable professional with a helpful handout detailing possible treatments would be very helpful. 
    Information seems to be very fragmented and you really have to work to find any answers.
    Most information about vaginal atrophy just recommends Estrogen creams which are not an option now for me.
    I have not been back to my Gynaecologist since the diagnosis as yet, possibly he may have more information?

    This subject is one I am working on, amongst others, with my Cancer Centre based psychologist.

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