Hi everyone, just wanted to say thank you all. This community is amazing and I'm so grateful to have stumbled across this site. I'm newly diagnosed (4th June 2021) with invasive lobular carcinoma. Several lumps in my right breast and I'll need a mastectomy. Like everyone else at this stage I'm overwhelmed, terrified, in denial, then accepting, then distraught, then calm, then totally panicked. It does feel like my lovely middle-aged life has been suddenly and shockingly smacked onto pause and I simply have to deal with this. I have no choice even as my mind shouts 'no no no not me! Not fair! I don't want to do this!' But while reeling for the past few weeks and thrust into this horrible new world of undergoing biopsies and MRIs and surgeon appointments, I've been so grateful for the support of this website. Reading the articles and especially your stories and posts has been so very reassuring and given me tons of information. Plus speaking with the amazing bcna support ladies Anna and Giovanna, has been a godsend. Anyway I just wanted to say thank you, this has all helped so much in these turbulent early stages.

Hi @annajjj , isn't this group amazing. I couldn't have got through my treatment without people here. I was diagnosed on 30th April 2020. I finished all my treatment a few months ago now, surgery chemo and radium but I feel good now. It is so overwhelming but it really is one day at a time and there is light at the end of the tunnel. Best wishes to you 🌺

Hi @annajjj,Sorry to see you here but totally agree. I was like you nearly 1 year ago. I was diagnosed with ilc and had a mastectomy shortly thereafter. Just want to give you a light at the end of the tunnel. Im 3 months out of active treatment. I feel well and im getting told im looking well. Im back at work part time.Sending you a hug x

Hi @annajjj - I'm so glad you found the forum - it has been the best support for so many of us! And well done on ringing the help line too - everyone is just so lovely!The waiting really sucks .... I hope you get your surgery date soon. I was really spooked, leading up to the surgery - and was amazed at how good I felt immediately after it was over! Like a boulder has been lifted off you! I was diagnosed with ILC back in early 2018 - we have an ILC group you can join if you'd like .... some interesting stuff is put on there, specific to ILC. All the best for your surgery .... I hope you have lots of support at home too xx. Take care

Oh, And I changed Oncs mid stream, too - so it happens ... (I was very lucky that my surgeon and RadOnc were both lovely.) My original Onc was totally disinterested in me both as a person and a patient - almost as if I wasn’t ‘ill enough’ for his valuable attention.... I have a lovely female Onc now, who is also treating my husband’s cancer too - so I am very happy that I made the change! Take care xx

Hello @annajjj 🙂. I felt the same as you when I was diagnosed just over a year ago, and stalked this forum for months. It wasn’t necessary to post cos all the info I needed was already there, in all the comments. I spent months reading and getting informed. I also felt indirectly supported in what was the worst time of my life. It helped me so much. I’m glad you found it too. Good luck in your bc ride. There’s always someone here for a chat. And it gets better as hard as it seems, and you get stronger ♥️.

Thank you | BCNA Online Network

13 Replies

Sister
Member
4 years ago
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As with everything in this life, there will be the odd glitches @annajjj. Our reactions to them can be just as hard to cope with as the obstacles when you're used to being someone who can manage stuff and something like that completely tips you over the edge. Unfortunately, it comes with the territory so best to acknowledge it and keep going, though definitely consider counselling if you feel you're struggling just a bit too much. (I got left in the waiting room at my first rads appointment. I'd been sent to the wrong room and no-one bothered to look for me even though they knew I was in the hospital. Fast forward 2 hours to me stumbling around an unfamiliar hospital trying to find the right lift to get to the right floor in floods of tears, almost hysterical. Absolutely not me.)
arpie
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4 years ago
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Oh, And I changed Oncs mid stream, too - so it happens ... (I was very lucky that my surgeon and RadOnc were both lovely.)

My original Onc was totally disinterested in me both as a person and a patient - almost as if I wasn’t ‘ill enough’ for his valuable attention.... I have a lovely female Onc now, who is also treating my husband’s cancer too - so I am very happy that I made the change! Take care xx
FLClover
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4 years ago
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@annajjj 😊🤗 it can be a bit of a learning curve. We all get there 😘
arpie
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4 years ago
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oh dear, not a good start and justifiably upsetting @annajjj - sadly, it happens ... and yes, it is perfectly fine to have a sook day now & then! It is good to 'let it out'! I had a couple of big meltdowns during my active treatment due to stuffed appointments (or no appointments) & it wasn't pretty! ;) I'm glad you have a lovely breast care nurse - mine was MIA (missing in action! :( )

What state/city are you in? You can add it to your profile ..... We may have members nearby to catch up with for a chat & coffee ....

All the best for your appt on Mon xx
annajjj
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4 years ago
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That just made me feel so much better @FLClover . xxxx
FLClover
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4 years ago
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So sorry to hear that darl 🙁. That really sucks. My first medical team was not amazing. I had my dmx with a surgeon who turned out to be really unsupportive and caused me to get depressed. So after almost 2 months of severe anxiety and a generally terrible time, I changed surgeons. Through my new surgeon I also got my amazing radiation and medical oncologists, and then I had my amazing medical team. So sometimes we have to fight for ourselves and our rights to proper care, but the important thing is it’s there. It’s not unusual to sometimes feel lost and confused, and to have bad days. Just use your voice for what you know you’re worth. And vent away when you need to. It’s certainly helpful. Hope you’re new surgeon is better 🤞💖
annajjj
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4 years ago
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Thanks everyone. It was great to read your comments especially as today was a particularly wobbly day. The surgeon I was initially referred to transferred me to another surgeon but no one told me and I've been waiting all week for someone to call to set up an appointment to discuss MRI results without realising that I'd been transferred. And no one from the new surgeon got in touch as they thought the first surgeon had been in touch. So I'm a bit stressed because I felt like I fell through the cracks and no one noticed. Anyway thankfully I called today to follow up and it's all sorted now. New appt on Monday. But I keep hearing that I'll have this amazing medical team working to help me through this and so far the only amazing ones are you guys and my lovely breast care nurse.
Thanks for letting me sook. I'm okay now.
Julez1958
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4 years ago
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Hi I also had lobular cancer and it does have its own quirks.
The forum is full of useful information and support and no question is too silly.
We are all in this together and no one can really know what it’s like until they have been there.
I had my diagnosis last August and my mastectomy in October.
I am having my phase 2 reconstruction in August and have come a long way from the first shock of the diagnosis.
Hang in there, it will get better!
We are blessed with a great health system that has not been overwhelmed with Covid 19 cases.
jennyss
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4 years ago
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And thank you for your post @annajjj,

from jennyss in Western NSW
Cath62
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4 years ago
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Hi @annajjj , isn't this group amazing. I couldn't have got through my treatment without people here. I was diagnosed on 30th April 2020. I finished all my treatment a few months ago now, surgery chemo and radium but I feel good now. It is so overwhelming but it really is one day at a time and there is light at the end of the tunnel. Best wishes to you 🌺