I've been in touch with Dr. Fish about her project, and am quite pleased that she does want to take it further, by collecting additional information from a wider range of participants about our experiences, so please do contact her if you might like to be included.
Like everyone else posting here so far, my experiences at primary dx in 1997, and my continuing experiences since my secondary dx in 2003, have been entirely positive, with regard to being a lesbian with a partner who has been at my side throughout dx & treatments. She was treated as my "next of kin" in 1997, when I had surgery, chemo & rads, even before we had our civil partnership in 2006. My onc team at the Christie Hospital, our GP, the Mac nurse, the hospice, etc. have all been perfectly accepting & welcoming to her.
Haven't read Dr Fish's report, but understand that my partner and I might have been very lucky -- hope the findings have a positive impact on treatment of lesbians & bi-sexual women with BC, now and in the future.
I hadn't thought about the confusion we might pose until every new doctor/specialist/nurse we meet looks at each of us in turn and then has to ask: "Which one is the patient?"
I've got used to it by now so I usually introduce myself and civil partner at the start. Though even after I had said 'partner' to the specialist, she referred to her as my 'friend or whatever'!
Haven't had the safe sex advice yet...
We had to laugh when the chemo nurse was going through all the possible side effects and do's & don'ts with us on my first treatment - she started talking about using protection during sex for a few days after chemo because the chemicals can be passed on, but then she said "I don't really know what it is you do, but you need to be careful"!
Bless her, she got a bit flustered and started to blush! 🙂
I would also say (like above posts) that treatment has been equally consistent and good for me and my partner since my diagnosis in March 2010. We have been to all appointments together and made decisions jointly with the surgeon and oncologist.
No complaints as yet! I did have an interesting discussion with a BCN about feminist issues relating to body image and mastectomy when the topic of femininity and womanliness arose - but that was merely an interesting conversation...
Thank You for this link, which I also found interesting.
I have to agree with FabForty and say that throughout my treatment I never once felt uncomfortable about my sexuality and would imagine I was treated much the same as anyone else.
My partner also attended all appointments and was treated with nothing but respect. We didn't come into contact with one nurse, doctor, radiotherapist e,c,t that made us feel awkward.
I did attend group therapy when first dx, which included counseling. They also did counseling for husbands/wives who were finding things difficult and my partner was offered this service too. Neither of us was made to feel uncomfortable in the counselling sessions.
I write regularly on the Storm Rider thread and all the women on there are aware of my sexuality. They have been nothing other than supportive of me and I am so very proud to call them my friends.
Maybe we have been lucky, FabForty. Or.... maybe the women who took part were unlucky!
Thanks for posting the report - it makes interesting reading.
Speaking from my own experience, I've had excellent care and treatment from all the medical teams I've seen so far, and my sexuality hasn't been an issue.
My partner has been to all the appointments with me and we are both treated the same as any other couple (I wouldn't expect any special treatment, and don't make an issue of being gay, but we don't hide it either).
Going on some of the details in the report maybe we've just been lucky?!
I've attached the research report below.
The research discovered that lesbian and bisexual women are not getting the information and support they need and many felt existing cancer support groups were not accessible to them; often feeling excluded by topics of conversation or the environment.
As a result of these findings Dr Fish is now calling for care to be personalised to their needs and better support and information to be available to lesbian and bisexual women living with and beyond breast cancer.
I would suggest calling or emailing the organisers using the above contact details (0116 257 7732 or email ) who should be able to provide more information about the research project.
As Leah mentioned, the event is not organised by Breast Cancer Care, but if you are struggling to find out more please do not hesitate to email or call our Helpline on 0808 800 6000 and we will do our best to help.
Kate, BCC Failitator
I live too far from London to go to this, but am very interested in the research project, and would like to be part of it, if possible. Do you have any contact details you could either post or p.m. me?? Many thanks.
It's a bit late notice but tomorrow evening in London there is an event to launch a piece of research about lesbian & bisexual women's experiences of breast cancer. There has been very little work done on this area, so we have been pleased to support this research.
Professor Sir Mike Richards, National Cancer Director for England, will introduce the event, and there will be a keynote speech from novelist, actor and comedian Stella Duffy.
Date: 6pm, Wednesday 19 May 2010
Venue: St Anne's Church, Soho, London W1D 6AF
Please call 0116 257 7732 or email if you would like to book a place.
Please note: Breast Cancer Care is not organising this event and we don't have anything to do with bookings, but there will be some members of Breast Cancer Care staff there.