A lovely support
Twiggyjumps
Member Posts: 116 ✭
I feel blessed to have found the BCNA. The support here is so comforting and very caring.
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Yes - it's wonderful we have access to this experience, wisdom and understanding. Don't know how I would've coped without it
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Much agreed1
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I personally don't think I have ever encountered the level of support and giving that this forum provides. It's amazing and certainly helps us all get through.
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This forum has been heaven sent on my worst days and on the better ones. I am 2 years post diagnosis and looking back I would not have had the same level of assurance and peace of mind without these beautiful souls. We are all here for you x2
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I absolutely agree, the giving and sharing in such an honest, caring and individual way is beyond beautiful. So great to give back too as you come out the other side in the hope of helping someone else. I didnt have support for a very long time. My first diagnosis I did alone and 2nd and it was really only once I came through it I found the network which became invaluable.2
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It is hard to explain to others what we are going through and how we feel but it is such a blessing to know that all those on this forum get it and are there for each other. Love to you all. Jane xx
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Ladies I totally agree xx1
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Agree...helped me through my difficult days, it has helped me heal through helping others and reading others stories give me hope. We are so lucky to have this site. Kath x1
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So glad you're here to help Kath. I'm just at the beginning. Going through lots of emotions and haven't even started. Only had a few consults. Wondering why I haven't been directed to an oncologist yet. I'm seeing breast surgeon on Wed. so I'll ask. Husband is very concerned as to my bilateral m. choice and says why remove a perfectly good breast. He worries for intimacy loss of feeling for me. But I don't want to go through more ops and chemo if I can if it's done now. He said there just say there's a cure soon and then they're gone. He's more stressed than me. Anne x1
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Hey Anne,
His worries are valid as he loves you....I chose a single mastectomy (only because the other breast was fine, but this was my choice and everyone is different) and whilst there is a change in intimacy, it doesn't mean there's no intimacy: it's what we all call the "new normal".
More than likely you'll be put on Tamoxifen anyways and that has its own side effects.
There are loads of resources on this which you can get from BCNA, your 'My Journey' kit and also your breast care nurse.
There are also resources for partners and your husband could ask some of these questions of your breast surgeon.
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@Twiggyjumps it is overwhelming at the beginning. Im recovering currently from a Single Mastectomy/Diep Flap Recon, but it took a long time to get here from my first diagnosis in 2011. These beautiful ladies know only too well particularly my struggle the past few months leading in the surgery and were amazing! I had 2 major lumpectomies the other being in 2015 with my recurrence, 2.5cm ER+ only, clear margins and no node involvement. Grade 2, Stage 3, so had no choice but Chemo but couldnt have Radiation due to having it 4yrs earlier. At the time my Surgeon said in my case the Lumpectomy was as good as a Mastectomy absolutely zero benefit for me. It took 14 months from finishing Chemo to having this surgery and I only did PURELY because I had a recurrence and didnt want to gamble again I guess, eventhough I was healthy and Cancer Free. I had to have BRCA Gene testing to make sure before surgery as if positive I wouldnt have had a choice it would have been double. It was negative...Geneticists meeting with me said their opinion was absolutely not a double for me, my risk of BC in that breast was no different to randomly, it wasnt higher at all. I have zero regrets with it also, in my mind I figured why would I get rid of a perfectly healthy breast when there was no indication whatsoevever of it being affected. There are so many things to consider, and so very personal, it depends firstly on your definitive pathology, exactly what you have, sometimes there isnt a choice. Family history is another. So much to work through. For me it wasnt about intimacy at all, to be honest...6yrs of being ravaged through treatment, it was no longer useful, 2 major lumpectomies and radiation caused massive scaring, inside and out, the breast was always sore..so it became this boob that was there but useless. In that sense I didnt care. For me it was more about losing a part of myself and being the one to choose it when I was perfectly fine...and that psychological battle in your head where you go all this time they say you had this diagnosis different and twice, a recurrence and subsequent treatments both times that made me sicker than anything...and yet I was never sick, no symptoms at all, no lumps. NOTHING! the only sickness and pain etc., I had was from treatments. So it definitely plays with your mind. I am so glad I took my time, took a slow approach gathered alot of information and had numerous meetings with my Surgeon, Oncologist and Geneticist. Im in such a great place mentally now with zero regrets and knowing Im moving on and healing. I wish you nothing but the best, it is a super tough gig and hard for hubby too Id imagine so communication is everything and being well informed is peace. Big hugs to you Melinda xo1
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Wow Melinda you're amazing. It's a very difficult decision. Thank you so kindly for your support and sharing your journey. Well done and great to hear that you're healing so well. Anne xx0
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I have adapted to the intimacy change..back and neck rubs are more amazing now. I still have light skin touch sensation so a naked cuddle actually feels just like my old breasts. As they say the biggest erogenous zone is the brain. My unaffected breast I never actually liked being touched much, the one with the cancer , well we both avoided it after diagnosis anyway.
I didn't get a referral to an oncologist until after surgery. I think the pre surgery chemo is more often dependent on size...and it would happen if the breast surgeon thinks it needs to be done prior surgery. Hope this helps. Kath x1
