Are there any lesbian women out there diagnosed with bc? feel like I'm the only one!

[JulieD]

How nice to see this thread brought back to life!

debbie_t, Congratulations!! We had our Civil Partnership back in 2007 but haven't done anything about marriage yet. Also pleased to hear you are showing no evidence of disease after three years and hope this will continue for you.

I'm now past my 5 year secondary dx and last lot of scans showed stable disease so just continue with current treatments and take each day as it comes....

If any of you other lovely ladies pop on to the thread I hope you are happy and as well as possible xx

[debbie_t]

Hi all you lovely ladies.just keeping the thread going..hope life is good for you all. I got married in December (officially) to my now Wife and it was majical so we're official married now as we were given the 'right 'last year, about time, to convert our civil partnership ☺. .I got 3 years all clear in June so all well at the moment however, that angst never leaves..The fear of recurrent BC or spread.. take care ladies.Debbie T

[moorcow]

Hello and welcome Janeo13, and hi everyone;

so sorry to hear about your partner's diagnosis Janeo13 - it is such a shock, and I found Isimply didn't really have any experience of how to be with such shocking news, but you know what, you will both kind of find a way through it, maybe with support from here, or as Gus says elsewhere as well; and then I found we kind of settled to the task of dealing with whatever the treatment plan is - oh my goodness whatever the issues its SO MUCH EASIER when you have the treatment plan in place.

So glad to hear you are moving through the treatment phases Gus, good on you. My lymphodema is a bit rubbish at the moment cos I've had the flu so not taken much exercise - pretty sure I can get back on top of it soon.

with you in spirit everyone, all the best

N

[Gussie_WW]

Hi Janeo13. A quick hello to say how sorry I am your partner has been diagnosed. I found the stage you're at is the hardest ... waiting to understand the scale of the illness and to find out the treatment plan. Hopefully you won't need to wait too long for the MRI results. I'm not a pink / girly woman but have found great support here via the BCC forums and also locally via the Maggies Centre and on the chemo ward (etc). Take what you find useful and ignore the less applicable stuff.

I was dx with grade 3 primary breast cancer in April/May and have been on the treatment rollercoaster since, doing okay however, and definitely feeling better with only 2 out of the 5 treatment stages ahead of me now. All the best for your partner's treatment, feel free to pm me ( am at home recovering from 2nd surgery post-chemo, so plenty of time ATM).

Gus x

[Janeo13]

Hi - I hope you don't mind me joining you . My partner was diagnosed last week with grade 3 BC. , we don't know if it's spread yet (MRI on Thursday ) lump is huge (7cm - how did we not notice?). We know there's going to be chemo for 4-5 months , surgery , radio , herceptin etc . But it seems like we're entering the great unknown , one minute we are planning to get married (June 2014 on my 40th) , the next minute googling side effects & hat shopping ! Any help , reassurance would be great for both of us - it all seems so 'pink' out there if you know what I mean & not geared at us at all even though everyone we have encountered so far (I know, it's very early days) .

[debbie_t]

Hi everyone

Hope you're all enjoying yourselves as it's been quiet on here recently.  All looking forward to the jolly holidays?  I love christmas, especially since diagnosis, makes me appreciate it so much more nowadays. Hope everyone is okay. 

Xx

[moorcow]

Hi JulieD, Whimsy, and anyone else popping onto the thread,

hope you all reasonably good - hope your waiting, and your partner's is over Julie..waiting is the most irritating part of being involved with the NHS I think.

Its well chilly in newcastle , my OH is in Europe learning some clever new radiotherapy technique, and I am tucking up in front of the wood burner! I've found a cracking new swimsuit website - I hate all the flouncy multicoloured ones - and am now wondering where to find the money to pay for it - its an australian shop. let me know if you want the link and I'll PM you

all the best

Nicola

[JulieD]

Hi Whimsy,

Nice to see your post.

How you all doing? Been a bit quiet on here lately so hoping thats coz everyone is out living thier lives.

I'm not too bad, bit fed-up chasing bone scan results and getting nowhere! Keep telling myself if there had been further spread my Onc would have contacted me .......My partner is still being messed around with her hip replacement so we're both a bit fed up with hospitals at the moment.

Best wishes xx

[Whimsy]

You're not the only one. I thought I was! I haven't been on this site for a while but nice to see your post.

[moorcow]

will do - thanks for highlighting it

[Gussie_WW]

Hello all. If you have a moment, please complete BCC's survey about body image. I have been blunt abut the lack of support for lesbian/bi patients , would be great if others feel able to share their experience.
http://bcc.cx/17PrsCC

[Gussie_WW]

Love the idea of a prosthesis becoming a weapon. Maybe you should choose your superhero name? You're right, it would make great copy for the media.

Must admit I'm just waiting for someone to make a half assed comment when I'm out & about in my scarf so I can let rip my pent up rage . But all I get are a) studiously ignoring you b) outright staring (less frequent tbh) or c) the pitying smile.

[moorcow]

Morning all - how lovely that we are all sensitive to each other's possible crumple buttons; thought I might share a funny MX story - did you ever hear about me trying to throw my prosthesis at Nick Clegg? So the Lib Dems were having a conference in my home town, and were voting to support the privatisation of the NHS. I went along with a huge gang of folk to make a noise outside .....then it occurred to me - it would make the news if I threw my prosthesis and hit him.....I am a reasonable shot but could not guarantee  to hit him...then I wondered if it might really hurt which I wouldn't want to do to anyone...the organisers said I had better check the legal repercussions - so I asked a very lovely policeman whose wife had died of BC what they would be - he smiled and said just lots and lots of paperwork for me and a few hours at the station for you...well I thought why not?  Nick Clegg drew up - the car stopped about 100 yards further away from me than we had been informed it would and he walked away from me to a back door ....

me thinks they were tipped off

what a sight it would have been..

but you never know there is always the possibility of a next time as I don't ever intend a reconstruction!

[Gussie_WW]

Moorcow, your post caused me no distress at all! Thank you for sharing your take on this very difficult, personal topic. I was worried my response might unintentionally upset those who had mxs . If it has upset anyone I'm truly sorry.

[moorcow]

Hi again,

I've just messaged Gus - I think I was unintentionally insensitive going on about my partner after Gus's post about being widowed and its impact on her body image and the newness of cancer and widowhood. Sorry to you all too - I just got caught up in a sensitive spot of my own around body image,

best wishes and warm ones

N

[moorcow]

Hi everyone,

lovely to see this thread good and active. Body image - its the thing that got me most after I had got over the physical side effects of treatment. I had MX in March 2010 after lumpetcotmy not enough to clear disseminated cancers. My partner is wonderful, supportive, calm, but I found it very hard....to the point where at 2.5 years in I had to leave a party cos all my mates were stuffing things down each others cleavages and I couldn't bear it.....nearly lost a few mates when I rang each and everyone of them the following day to say I thought it was insensitive!

Anyway I've now changed out of swimming costumes on beaches, wandered around in firends houses in pjs without prosthesies, go to allotment without prosthesis - so I look like I am doing great, but really its very hard...even yesterday a friend came around with a lowish tshirt and I was just plain envious - I don't and never will dress like that anymore, I don't feel like that anymore. Its just a loss really, a grief, but a managable one.

to be positive and in perspective at the moment I consider myself disease free, and the lymphodema is harder than the lack of breast...but I am alive, fit enough, and working...can't complain really I can't

all the very best to you all, and great great news Debbie, well done you.,

N

[Gussie_WW]

Re body image. Good question & I bet we do differ from straight women. Am only 3 months post-lumpectomy, and not in a relationship (some of you know my partner died last year) so those things affect how I feel re body image right now.

Losing my hair in chemo doesn't bother me at all . In fact I quite like the visible badge of what I'm going through. Unlike the invisibility of being a widow!

I was very upset at the prospect of losing a breast. It didn't come to that for me. I am a bit worried about how sensitive it will be but frankly sex with someone else seems so far away as a prospect it doesn't bother me too much. The whole body image / cancer thing is so bound up with being widowed - and both are so new for me - that I struggle to untangle them, I realise as I type ...

Gus x

[Guest user]

Thanks Debbie for starting this post. .. Yep I think being a LESBIAN going thru breast cancer is different to straight women... Our relationships are different, so too our lives and 90% of our experiance in general I would say. ..
Diagnoses last year I am still going thru my 2 year IV treatment plan ontop of chemo radio and surgery. . Fatigue is a big problem and for me, yep the old body image too. .. Who is body image affecting other womwn here, would love to know

[Gussie_WW]

Hello Gennie. Sorry to hear your mx wound is giving you such grief. I had a lumpectomy so have no words of post-surgical wisdom to offer whatsoever but I guess others will elsewhere on the forum if not here. Must have been a bit of a gear change going to a CP as your first non-medical appt since the op! Gus x

[Guest user]

Hi, I have had a mastectomy 5 weeks ago but having huge problemw iwth tehg woubd, Got a huge dressing and machine sucking at it 24hours a day... but it is getting better. i went out last fridqy for th firts thing that wasn't to a mediacl appointmnte to a civil partnership. I found myslef ooking at all the women's boobs! This is going to be hard...Not sure that talking agbout it with stright women wil be ok...

[Gussie_WW]

Debbie, FANTASTIC news!! Have you stopped celebrating yet? 😉 How are the holidays (plans and actual) shaping up? I like the silver fox look myself, though am currently sporting a JessieJ + various malfunctioning headgear.

Moorcow, I'll also be having ANC down the line, so will definitely appreciate hearing how it was for you.

Julie, the heat is ok if I stay out of it. Cooler up here (Edinburgh) right now thank flip.

Lucy, welcome to this thread - have also posted on the one you started.

As for me, I'm FECx2, day 11, which is when my energy levels start to climb and I feel more like myself. Surprised myself by doing some yoga this morning - stiff back, clicky hips. But it was great! What with the surgery and the chemo I'd not really felt up to it until now, but my BC consultant encouraged me to get back into it when I felt ready. Anyway the dog is reminding me he needs his morning walk so I'll scoot for now.

Bye, all. Gus x

[debbie_t]

Hi all you wonderful ladies. Thanks for keeping this thread going.
Back at work full time now and it's good to be back to a little normality, I'm now just starting the 6week holidays too, nice rest for a little while longer
;-) the joys of working with children !
Had great news today, CT scan results came back clear so that's mammo and ct scan clear. . Whooohoo, can't stop smiling, Can celebrate a little now 🙂 is about time for some good news, it's been horrendous 13 months. I've just had 2 ladies I know well diagnosed with this crappy disease so fingers crossed for then and everyone else having treatment/diagnosed and recovering from the bc nightmare. It's been a tough ride up to now
. Everyone loves my new silver Fox look so I'm keeping, no more hair dye bottles for me... that should save me a few pennies. .. you have to look for the positives dont you.
Off on holiday next week so fingers crossed no flash floods but raging sunshine.
Very Best wishes to all you having chemo, scans tests etc... I think about this journey all the time.and the ladies who are just starting, It's a nightmare but is doable..I was just starting chemo this time last year, couldn't imagine seeing Xmas at the time Now ready to go on holiday. ... How the mind is so cruel at times.
Best wishes and
Huge hugs to all of you ((( )))
Debbie
X

[moorcow]

HI everyone, lovely to see you again JulieD. best of luck with your results Lucy58, I had ax clearance too so shout if you need any info I might be able to help with. Best of luck for rest of chemo Gussie. Hope all good Debbie -t,
in sisterhood,
moorcow

[JulieD]

Hi Lucy,

Sorry you've had to join us but welcome. Hope you are recovering well from op and your meeting with Onc on 2nd goes well. I guess you won't know what treatment you'll be having till you have that meeting but hope all goes well, let us know how you're doing.

Gussie poems can be a great way of letting emotions out. Glad you are feeling better and hope SE's are kind to you, specially in this heat! I had a wig party with my sisters when I had my primary dx, was a real laugh and have a photo of us reflected in a mirror looking like members of Queen!

Hope everyone is keeping cool xx

[Lucy58]

I am newly diagnosed, and a lesbuan. Had lumpectomy and axillary node clearance 11 days ago. See the oncologist on the 2nd.
Hope all is well with you.

[Gussie_WW]

Julie, I'm angry when I think about my husband 😉 but I will channel that to good and raise it appropriately when the moment's right. My work is fairly closely connected with some of the oncs so I will find an informal as well as more formal way to raise awareness. I'm always happy to do that coz I've been out for so long and had so many interactions with medics thru my partner's illness, and I think how it must be if you don't have that experience &/or confidence. Meanwhile I wrote a poem which made me feel better...!

Debbie/moorcow, good advice about not doing too much too soon esp re work. I met my boss for a coffee yesterday and he is keen I don't rush back too soon - and reassuring me there is still being a job for me at the other side of all this! Don't see how I can go back while I'm having chemo. Yes I have more energy in week 3 but living on my own I need to catch up with all the stuff I didn't do in the last 2 weeks & get ready for the next 2!

As I'm feeling much better (FEC cycle 1, day 17) I actually quite enjoyed the last few days, including comedy wig fitting (wasn't going to bother then realised it was my chance for a Joan Jett rock chick look so cheers NHS Scotland for the wig prescription). My hair's starting to come out now, so off for a buzz cut in the next day or so then buffs and scarves a-go-go. And occasional wiggery. 😉

[JulieD]

Gussie that must have been realy tough, and must have shaken as well as annoyed you, how are you now?
Debbie good to hear you are enjoying being back at work, don't overdo things though, take your time to adjust.
Moorcow how lovely to see you poping back in, yes time does seem to pass so quickly, how are you getting on with the Tamoxifen, it's a great drug but the flushes aren't fun are they. I pop in on the lymph site sometimes and have seen Norberte there, nice to keep an eye on what's going on with folk. I'm afraid I hate my sleeve so much that I don't wear it!
Hope everyone is keeping as well as possible, love to you all xx

[Gussie_WW]

Don't worry, I am covering up, wearing a hat and sun cream! Been out and about a bit today, anti-bac hand rub also at the ready. 🙂

[moorcow]

Hello again everyone, just popped on to say hello and keep the section alive...amd here you all are .
Gussie -WW I am SO sorry you had to find enough energy to challenge the husband / pregnant stuff whilst also facing another chemo cycle and while grieving.....I really do think there is a need for equality updating and when you can face it some enquiries will help others of us who go after you. I do hope you are OK with the chemo , very best of luck with it. At least after the first couple of cycles we know how its going to affect us...never got used to the red pee tho!
debbie - t - take it easy at work won't you - it took me so long to get back on my feet and i think its cos i pushed too hard at the begining maybe?
Julie D - HELLO my friend, how are you? I am about to celebrate 3 years on tamox...unbelieveable how quick it goes. I "see" Norberte on the lymphodema chat rooms - mine is managable thank goodness, but only cos I pushed and pushed for a service when it was still quite small swelling...had i done what the surgeons / oncologists wanted I would be the size of an elephant by now..
all the very best - remember to stay out of the direct sun Gussie,
Moorcow

[Gussie_WW]

9 days out from my first cycle of FEC. Doing okay today, actually! It's good to have the energy to feel like doing something other than stagger through the day.
Had an annoying lesbian-specific moment in the chemo ward. My bcc nurse and surgical team have been spot on with appropriately handling the lesbian widow. So it was a bit of a &!#¥ that somehow in the transfer to the oncology team my dead partner was turned into a husband! I had ticked "widowed" in their paper registration form with no further explanation because to be honest it hadn't occurred to me that the important details wouldn't follow me. So there I was getting the pre-chemo nurse spiel about sex and body fluids, and the onc nurse asked if I might be pregnant, and I said not without knowing it being a lesbian, ho ho ho ... to be fair that nurse handled that well too. Then she came back later and said just wanted to check, your notes say your husband just died which is obviously a mistake. She apologised profusely that someone had made such an assumption and corrected my notes. But grrrr!
I was then left sitting rigged up to the drip having had that interaction (which would have been rattling at the best of times) plus the whole dead partner conversation (how did she die, how awful for you etc) feeling absolutely terrible.
I'm going to make some discrete enquiries about who gave me a husband. Am not in the mood for a fight but whoever it was needs their equality training updating.

[debbie_t]

Hi gussie,
thanks for replying. Sorry I haven't been on here for a while. Busy back at work so some normality at last. Hope you are well in your journey, where are you up to at the moment?
I am now six months out of treatment and back at work, it's very tiring but just glad to focus on something different than hospitals, treatment, tests etc I feel a little human again, fingers crossed it last s for a long long time.Anyway,nbest wishes to you. Hope t o hear from you soon.
Debbie
X

[JulieD]

Grrr, just posted and lost the post!
Anyway, hello all. I feel like an old hand at all this now. Was dx primary in 1999 and secondaries (bone) 2010. As Moorcow said there was not a section for gay women in those days. I have always used the main boards/forums and have never had any problems from any of the straight community. It is nice to have our own section too though and it would be good to see it more active so keep posting.
Hello and best wishes to you all - keep in touch xx

[Gussie_WW]

Belated hi, Fiona. See you in the June Jewels group. Have you started chemo yet? I'm pencilled in for Weds 26th.
Gus

[Satsuma]

Hi just saying hello too! I think I'm at the same stage as you Gus, starting chemo this month.
Really sorry to read you've had such a tough year.
Fiona x

[Gussie_WW]

Hi Debbie. Just wanted to say hello. At a much earlier point in all this than you byou hello anyway!
gus x

[tracyld]

Hi Debbie,
I am so pleased that you have had some replies from the other girls, but sorry to hear that you have been feeling under the weather. Take things slowly , there is no rush, just take it nice and steady. A chest infection can be so nasty and I always need to increase my inhalers when ever I get a nasty cold. The sunshine will help us all feel better very soon.
Sending you healing thoughts to get better soon. Love Tracy xxx

[debbie_t]

Thank you for your response Alize and Alex J

I havent been too well so havent been on so sorry for the delay in replying.
I finished all my treatment in December 2012 and since been on the road to recovery, growing hair, eyelashes etc but the fatigue has really knocked me for six, my mind is willing but the body says otherwise which is very frustrating, I just want to be doing all the things I was doing before my diagnosis as I still feel a relatively young woman (44 at diagnosis) but my arm, tiredness gets in the way. I am hoping to return to work next month but right now it seems almost impossible to contemplate getting back to my usual self that everyone expects.
I have been with my civil partner for 12 years, we were 'civil partnershiped in 2006 and I can honestly say without her I dont think I couldve go throught the past 12 horrible months. We havent met any hostility towards us from any of the professionals involved but lots of posts/leaflets etc are about ladies with male partners and there is nothing on the Lesbian forums for women with breast cancer (supposed to be even higher statistics amongst gay women I read somewhere) and therefore it's frustratiing that nothing is in print anywhere.
Alix, when are you having your ceremony ? I really hope it goes well, ours was the best day ever, everyone said how laid back and enjoyable it was and the words we chose had many in tears, it truly was special and send my very best wishes to you both.

Please keep in touch ladies and take care,
debbie
xx

[debbie_t]

HI Benitsykim,

Apologies for not being on for a few days, I have the a really bad chest infection so felt really lousy.
So sorry to hear your news about your partner, I really hope that she will make good progress on that drug, Ive heard it's pretty tough in the beginning until you get used to it. Big hugs to you and your new family, having a baby is stressful at the best of times so can only send my very best wishes to you all.
please keep in touch and thank you for responding to me.
take care
debbie

[Guest user]

Thanks Moorcow. If anyone's interested, you can read more about the report and the launch event here http://www.breastcancercare.org.uk/campaigning-volunteering/policy/breast-cancer-inequalities/lesbian-bisexual-women-breast-cancer

[moorcow]

Hi there everyone - no you are not alone. I was diagnosed 3 and a bit years ago and when I was there was no "lesbians and bisexual women" part of the forum, so with a few other brave souls, particularly Norberte, we asked BCC to make the appropriate ammendments to the site. There was a bit of tricky stuff from some other members, but mainly lots of support. Norberte and i and the others have mainly moved on - my BC currently stable with tamox....
but I do pop on here sometimes to see how people are and to welcome new friends....so welcome everyone.
BCC did a report about lesbains and their BC treatment so you should be able to get that if you want it - Norberte and I did talks at their london launch of the report..and lots of the other lovely women using this part of the site came along or sent good wishes.
all the best to you
Nicola

[AlixJ]

Hi BenitsyKim
I'm so sorry to hear about your partner's secondary diagnosis. I really hope that she starts to improve on the treatment. Your profile pic is gorgeous - you look like a lovely family.
Love and light,
Alix

[Guest user]

Hi, my partner had breast cancer in 2011 and now diagnosed in early march with secondaries to lungand bone and is currently seeming very poorly. She started xeloda yesterday but it is very hard for her to get in as the cancer and anxiety is making her very nauseous and at times sick. We also have a 9 week old baby that I conceivedvia a donor. I have a feeling the onc last Tues wasnt telling us how quickly things are deteriorating..

[alize]

Hi Debbie, im here too!
There are times when being gay IS different in the BC world and it always feels better to know you're not alone!
I have never had any awkward moments from my 'team', oncologist/chemo nurses/surgeons when my partner sara has been with me at appts and together we already know the strength and love from friends and family and work colleagues.
what can be sometimes difficult is supporting one another emotionally! As 2 women in 1 relationship there can be an awful lot of talking about meaningful issues and feelings!! and thats without a (secondary, in my case) diagnosis of breast cancer.
sara and i weren't together when i was first diagnosed 10 yrs ago so im a bit of an old hand re the emotional side in some ways and at times i find it tricky sharing this journey with someone so close and caring and she finds it hard that, true to form, i dont always behave in the way she would have expected someone in my position to do so! The hardest thing for me is dealing with her scared emotions and seeing her hurting cos as women we aint that good at keeping things back!
Anyway - wishing you and yours all the very best
Alize

[AlixJ]

Hi Deb
You're not alone! I was diagnosed just over a year ago, and have had three lots of surgery and chemo since then, and I'm on Tamoxifen. I'm now back at work, and me and my OH are having our civil partnership on May 31st (postponed from last year because of diagnosis). When did you finish your treatment?
Alix x

[tracyld]

Hello Deb,
Just bumping this to the top in the hope that you get some replies from the gay community. My sister in law is gay so I understand, but honestly you can join any of the threads we ladies do not mind at all. We just want to be able to offer help and advice, love and positive vibes. Do not feel freaky you are perfectly normal. I keep in touch with a couple of my sil's ex partners and we are very good friends with another gay couple and went to their civil ceremony. I hope you have a good partner who can help you cope with everything. Do you have any other concerns ? I too had mx and FEC T Chemo but chose not to have Rads. I now take Tamoxifen. Take good care of yourself .Love Tracy x

[Guest user]

Hi Deb and welcome to the forum

I'm just bumping up this post for you as you're right that there haven't been many posts in this section recently, but I know people do sometimes pop back so hopefully they'll say hi.

In the meantime, you can contact our one to one peer support service http://www.breastcancercare.org.uk/breast-cancer-services/someone-talk/one-one-support. I know we do have some peer support volunteers who are gay women, so definitely worth seeing if we can put you in touch. You can contact the team on 0845 077 1893 or email: ukpeersupportteam@breastcancercare.org.uk

Best wishes

Leah

[debbie_t]

Hi.i was diagnosed over a year ago with triple negative bc with lymph node involvement. I've had surgery., chemo and rads. I would love to hear from any gay women who have been diagnosed/affected by bc as i feel I'm the only one. Feel a bit freaky as there doesn't appear to be any posts by gay women recently. Look forward to hearing from anyone who fits the bill.
Cheers
Deb