Sexual Wellbeing and Intimacy (Seeking breast cancer survivor feedback)
KymB
Member Posts: 93 ✭
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.
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
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Comments
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hi @KymB
It might be worth also putting this in the Lets talk about Vaginas group ?
are you a member ?
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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.
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you can be a member I will send you an invite
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Hi @KymB
Happy to respond.
Apart from taking precautions about sex during chemo, I was not given any information about effects on my sexual health at the beginning of treatment. My oncologist is communicative and helpful, and as I didn't have any problems, I didn't ask further at that time.
I knew from the manufacturer's information that femara could cause vaginal dryness. It did, within 4 months to become apparent and within 6 months to cause pain and bleeding in vaginal intercourse. Medical advice was that it could be easily counteracted by oestrogen treatment but this was contraindicated given my diagnosis. Considerably later oestrogen cream was discussed but with a fair amount of 'it's up to you'. I was too wary to try. My choice.
Recently my breast surgeon has strongly suggested I use oestrogen cream as he is concerned about the possibility of prolapse. His careful and detailed analysis about my age, years on femara and risk has convinced me to give it a go. In a month, dryness is much improved and I am using the cream considerably less than the recommended amount.
My libido is still affected. There is no way of telling how much this is femara and how much is age but it's probably both. While my partner and I are reasonably inventive, we may not plunge back into the old routine as his sexual prowess and staying power isn't what it was 6 years ago either! It's annoying but we manage to
laugh about it as well. Say much the same about ageing too!
I have mixed feelings about what doctors should say or not say. A diagnosis of breast cancer, mastectomy and my oncologist's honest list of possible chemo side effects was quite enough - telling me at that point that I might effectively lose my sex life (that's how I would have seen it) might have propelled the imagined walk out of the consulting room into reality. At a first meeting, he didn't know me well enough for that! I have found that my medical team have answered questions honestly - that includes 'we don't know' or 'it's up to you'. I'd love them to have more definitive answers but often they just don't have that information. And it must be hard for an oncologist, early in treatment, to accurately assess what you can handle and what you can't. No easy answers. We do the best we can and look forward to better developments.
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@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.4
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Hi @KymB I've PMd you, but I thought I might throw something into the general conversation.
If you google ''sex after prostate cancer" you will find many articles that concentrate on technical issues. And many of those articles are current. The focus is on the physical.
Google 'sex after breast cancer' and I found a rather different result. Lack of desire or grief associated with body image. Most of what came up in my feed (remember that can differ from person to person) were older articles. The focus was on the emotional.
I found that interesting, given my problems relate to physical changes which are hardly mentioned at all.7 -
Many thanks to those who have responded and private messaged me. Much appreciated. Thank you!1
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@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
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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
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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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Many thanks to everyone who responded so generously to my earlier questions about sexual wellbeing, ahead of my presentation at Peter Mac. The audience consisted of Psychiatrists, Psychologists, Nurses, Social Workers and others working in the medical and psycho-oncology profession. I used many of the comments I had received from you (de-identified, as promised) and the feedback from the audience was was heartening. Several practitioners approached me afterwards to say they would be encouraging their colleagues to discuss sexual health and wellbeing with their patients in future. It's a small step, but in the right direction I feel. Thank you all again for your feedback - very much appreciated.
Best wishes to you all.
Kym
BCNA - Consumer Representative volunteer8 -
Awesome, @KymB - is there any way to get read/see/hear a podcast of your speech?
A bit late but - no one in my team mentioned it & I didn't raise it. I was already 10 years post menopause when diagnosed & already had extreme vaginal atrophy. Initially I tried HRT creams but that brought on a change to my breast tissue that was picked up by Breastscreen & had to go to John Hunter for further tests. I was advised not to continue it as the testosterone component was believed responsible. So, sadly - that horse had well & truly bolted a long time ago!
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Hi Aprie, I don't believe the panel presentation was recorded. I'll ask the facilitator and if I can get hold of it, I'll post it. I suspect not, as we weren't asked to sign any recording consent documents. Thanks for your comments.
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