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NeG

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Joined 5 years ago

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Re: Tamoxifen few side effects
Great to hear. Yes I played around with taking it before bed (which I have read some women prefer) but have found it is better if I take it in the morning. I know what you mean about feeling "edgy" I find I'm a bit inexplicably anxious at times, which I minimise by doing exercise (a long walk usually) this just evens things out. I'm not putting on any weight, thankfully - maybe because I'm trying to stay active, which is more for my mental health but I guess additional physical health benefits. I'm 48 - no idea how close I was to menopause before all of this but for the past 3-4 months I've been on Tamoxifen I've still been getting my regular period.
4 years ago Place General
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Tamoxifen few side effects
I think it's worth noting here for women who are worried about taking tamoxifen that I'm coping ok with it for the past 3 months. The first month was zero side effects and then at about 4 weeks I had a major melt down. I put it down to a combination all coming together at once - the enormity of it all, the loss of a breast (single MSX), the tamoxifen, the time and space to take it all in. Lost the plot for about 2 weeks. I dropped my Tamoxifen to 10mg every other day (not prescribed) for about 10 days - I just needed to get over the hump - but have been back up to the 20 mg dose for the past 6 weeks and the side effects are absolutely manageable. some hot flushes, which cause early waking. but mentally ok. Genuinely for the past 6 - 8 weeks it has been easily manageable. I'm writing this because I know that we tend to highlight the bad stuff - and I want women to know that Tamoxifen is not so awful - it has been genuinely ok for me. Mine was 100% er +
4 years ago Place General
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Re: Tamoxifen side effects
Tamoxifen has been ok for me. At the 4 week mark I had a significant weird thing happening: hot flushes, insomnia, depression, anxiety, i dropped the dose (without consultation) to 10 mg every other day, then after about 2 weeks, once my moods had stabilised I went back to the full20mg dose and I have been completely fine since - a few hot flushes at night and some insomnia, but depression and anxiety largely gone. I try to exercise every day - walking mainly. Overall I'm finding the tamoxifen very "do-able".
4 years ago Place Hormone blocking therapy
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Re: Case of the sads before mastectomy
You'll be there or thereabouts by now. I just wanted to say, it's going to be ok. I had a single mastectomy in March. It's weird, there's no denying. You won't be able to feel your boob. But hopefully the recon means you'll have a boob that looks close to normal - it won't feel close to normal and that's sad, there's no getting around it. You'll feel down but you'll also come around - shit unlucky to be in this situ but also lucky it's not far worse. Big love, It's onwards from here.
4 years ago Place General
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Re: Urgent Surgery advice
Hi SKBR - your situ sounds very similar to mine. I too met with Cindy Mak and Dr Rippy. I had 3 lumps grade 2 and Grade 1 IDC. Mak suggested lumpectomy and flap recon with radiation, but ordered an MRI to assess first what was going on to be sure that was the right way to go. Rippy suggested a mastectomy with immediate recon because she thought there might be more activity in there - no radiation. Rippy showed me lots of recon work she had done - all of which looked really well done. She also recommended me former patients to talk to. The doctors both seemed great but in the end I chose to go with Rippy and I was not disappointed. The resulting pathology showed that the Mastectomy was the right way to go - there were in fact 11 tumors, most tiny. The largest being 2.7cm. I am now three weeks post surgery, nipple sparing and skin sparing and the boob looks good. Still bruised and battered and nipple a bit scabby but Dr Rippy assures me it will come good. The question then became would I need both chemo and radio as the pathology revealed there was more going on than initially thought - however I was node negative, 100% Pr/ER positive so a good candidate for hormone treatment. I have sent off to do an oncotype DX text to the States (goodbye $5k) - that will confirm for sure best treatment for me. While my initial thoughts were lumpectomy, what I didn't want was to then have to go back because the margins weren't clear. Mastectomy was the right choice for me. Keep talking to your surgeons and other people so that you know for sure you have arrived at the right decision for you. I felt "ready" by the time the surgery rolled around - I had explored all avenues and felt that I made the right decision. I think this has helped in my post surgery state of mind which has been very good. Good luck with your journey. X
4 years ago Place General
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Re: Upcoming masectomy
Hi Kel, I'd be interested to know why the plastic surgeon is having doubts, as two centimetres is the surgical benchmark. There's no going back so you are right to question and explore all of your options. My oncoplastic surgeon did both the mastectomy and reconstruction. We spoke about the nipple and she said if there were abnormal cells when I get my pathology back post surgery then the nip would have to go in a follow up surgery (but could save the areola). She is all for trying to get your breasts looking as normal as possible. I am now 5 days post surgery and she has done a fantastic job, albeit boob is still bruised and battered. I'm going to post photos in the reconstruction page in a few weeks time once everything has settled down a bit. My emotions were all over the place in the lead up to surgery , it's an awful experience. I met with my surgeon three times as well as got a second opinion as well as spoke to women who had been through different procedures - lumpectomy, double and single NSM. So by the time the surgery came around, I was calm on the day. I was "ready" I was resolved. Post mastectomy I have been in a pretty good place mentally and I really do think it was because I had the time to digest all of the information and felt I had chosen the right outcome for me. Good luck Kel and all the best over these coming challenging weeks.
5 years ago Place Surgery
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Re: Upcoming masectomy
Hi Kel, I've just had a single NSM. My cancer was six cm from the nipple. My surgeon said she ideally needed it to be 2cm clear from the nipple to save the nipple, so it sounds like you have enough margin there. Why don't you get a third opinion from another respected oncoplastic surgeon - it's a perfectly reasonable thing. You need to feel like you are making the right decision for you. This is a mental challenge as much as a physical one. Good luck with your decision
5 years ago Place Surgery
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