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bee1234
Member
since
03-08-2021
47
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41
Hugs
18-07-2022
02:42
Hey, only just read your post. I had single mastectomy 11th April. Doing ok since. Still some tightness. Back on oral chemo now and then radiotherapy. im still battling with myself about wanting the other side gone. All doctors tell me I don’t need it but I can’t settle on that still. Maybe I will when I’ve finished treatment. how are you getting in? Xx
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14-03-2022
03:17
1 Hug
@Jaybro hi, thank you for your reply and great to hear your story. You’ve made a good point about the C word returning. I’m just really struggling to decide or accept a decision on the single or double mastectomy. It’s literally driving me crazy. I just want to be confident in what I decide. How long ago was your diagnosis? I like the idea of joining the Facebook group but I think I’d make myself even more scared about the future. I did, foolishly google once but quickly realised that was a mistake. How did you heard about this new drug? I struggle to find I formation like this. I am definitely an information gathering and find it hard to ‘just’ trust the oncologist is giving me everything I need and can have. Thank you for your message x
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14-03-2022
08:33
2 Hugs
Hi, I have triple negative breast cancer and have been offered a single full mastectomy. I’m 40 and believe my tumour is quite aggressive. I just want to rule out any possibility of the blinking thing coming back. From the beginning of my diagnosis I have been very keen on having a double mastectomy but I feel my surgeon wasn’t that keen, however my appointment was about 7 minutes with him, so no real discussion at all. All my genetic testing was negative and there is no family history that I know of. just wondering if anyone has been in a similar position to me? Any fors or againsts are welcome. also would love to hear from ladies that had triple negative breast cancer and are now some way down the line to ‘normal’ life. I feel quite scared about having triple negative as I know it’s probably the worst of the Brest cancer bunch! thank you xx
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09-03-2022
10:56
Hi, I have triple negative breast cancer and have been offered a single full mastectomy. I’m 40 and believe my tumour is quite aggressive. I just want to rule out any possibility of the blinking thing coming back. From the beginning of my diagnosis I have been very keen on having a double mastectomy but I feel my surgeon wasn’t that keen, however my appointment was about 7 minutes with him, so no real discussion at all. He just glossed over my question about wanting a double mastectomy. The whole appointment was very disheartening. I will have reconstruct surgery too, implant expanders or DIEP. All my genetic testing was negative. I would like to know if you have any experience of ladies wanting a double as a preventative measure. I have also been trying to find information regarding recurrence in the other breast, do you have this information or point me in the direct where I could find it? This is a life changing surgery and I really want to make the most informed decision. Hope you can help. I have a follow appointment next week. Thank you
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02-03-2022
04:54
@Kathryn1985 this is just the advice I was hoping for, I wasn’t sure if I am being unreasonable. I might drop you a private message if you don’t mind. Thank you
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02-03-2022
03:11
1 Hug
Hi, So I’m due to have my first appointment with my surgeon tomorrow. I have triple negative breast cancer and if I remember correctly from the first few appointments at diagnosis, I’m probably having a full mastectomy. im very keen on having a double mastectomy. I’m 40 and believe my tumour is quite aggressive. I just want to rule out any possibility of the blinking thing coming back. I feel if I’m having one full mastectomy then I’d rather have the double. just wondering if anyone has been in a similar position to me? Any fors or againsts are welcome. if I have a little bit of knowledge heading into my appointment tomorrow I might feel better to ague my case for the double mastectomy. also would love to hear from ladies that had triple negative breast cancer and are now some way down the line to ‘normal’ life. I feel quite scared about having triple negative as I know it’s probably the worst of the Brest cancer bunch! 😏 Thanks
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08-11-2021
07:47
@key82 Hey, hope you are doing ok while on EC. I’m interested, are you having a 24 week treatment plan of just EC?
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07-11-2021
09:00
3 Hugs
@YoYo Hi, sorry to hear you are joining this rollercoaster that none of us want to be on. I was diagnosed in August/September with the same breast cancer as you, the big triple negative pest! I’ve just turned 40 and thought live was just panning out the way I wanted then the C word was dropped into my live. The early stages are so daunting and so much information ti take in. Being positive has a massive part to play but down days are allowed too. Feel free to private message me if you fancy a more one to one chat. X
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09-10-2021
07:58
@corny did you continue with the cold capping? why does it have to come back through grey, you would think the hair gods could be kind to us and sprinkle in some other colour than grey! But it’s hair I guess. ive heard Waterman’s Is good and heard of Elxir though, will have a look. Thank you and good luck x
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09-10-2021
07:54
@Jude11 sounds like your experience was very good. Guess your hair will just look a bit uneven while it all grows back but that’s no bad thing. Did you still use any head coverings? You sound very positive. Hope you are well on your way through this journey x
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09-10-2021
07:51
@Guest user glad to hear you are doing well and I’m guessing finished all of your treatment? so what kind of length do you have now if you finished chemo last December? thank you for sharing your experience, I love to read everyone’s stories. X
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24-09-2021
11:20
1 Hug
@Sparkle123 Oh wow! That’s really helpful and good to know what to expect or not except. Thank you so much for sharing that. It’s a long process but sounds like you are well on your hair journey. really appreciate your advice. stay strong
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24-09-2021
10:51
@Sparkle123 can I ask when you finished your chemo? Guessing your hair started to grow once the Chemo stopped? that’s encouraging to hear your hair has grown back the same colour if not a little wilder, it’s the ‘just got out of bed look’
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24-09-2021
10:36
1 Hug
@Sparkle123 Ahh sounds like you had a tough experience with the whole cold cap. That’s not nice when you are dealing with this situation anyway. Everyone keeps telling me it’s only hair and it will grow back, but it’s a big deal. Thinking of you x
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24-09-2021
10:25
2 Hugs
Morning ladies, thank you for all your messages it’s good to get all different points of view. I have been lucky to get some direct information from Paxman regarding the possibility of reducing how the chemo may or may not be reduced. There is no evidence or papers to support that it does reduce the effectiveness of the Chemo. I still guess there is not absolute guarantee but I’m sure the cold capping would not of been approved if there was any hesitation. On Monday I had my first experience with the cold cap and it wasn’t so bad at all. Just had a bit of a headache in the evening. I’m still expecting my hair to fall out and will just see how I feel when it does and if that might change my plans of using the cap moving forward. who’s knows the best way to tackle this journey, I just feel I want to get all the information I can and make the best choice for me. Good luck ladies and keep the hair convos coming. Any tips are welcome! Xx
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24-09-2021
10:12
@corny wow you have kept a lot. Well done. Thanks for your reply. Hope you are feeling ok now
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24-09-2021
10:10
@Sparkle123 Hi yeah I heard about the exercise bands, did you try them?
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24-09-2021
10:09
@louby_lou69 thanks for your reply. I totally understand your view and that’s a fair point. So much to consider on this journey and all options are well. hope you are doing well.
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18-09-2021
10:38
@Katie1988thats interesting to hear. Im in Kettering so not close to you. It’s just put a real spanner in my plans. If he told me completely not to use cold cap then I would go by what he says. But at the end of the conversation he said ‘but it’s up to you’ Let’s see what replies we get!
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