Member: LJS | BCNA Online Network

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Re: Usure what decision to make
It's horrible having to make these decisions when it's all new and you're not the specialist. You have to gather as much (reliable) info as you can, trust in your instinct and what feels right for you (and what you can live with). I had ILC and had a lumpectomy in July and have just finished four week's radiotherapy. I feel good with my decisions and now wait to see my medical oncologist to discuss hormone treatment. I wish you all the best with your journey. It's a tough one.
1 year ago Place General
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Re: How can my DCIS grow in 2 weeks?
Oh how distressing for you! I'm only new to all this (having radiation now after a lumpectomy), but I do know that with every screening test I had (two mammograms, two ultrasounds, CT scan and PET scan), every measurement of my tumour was different. With dense breast tissue apparently it is hard to pinpoint size exactly. I am surprised the surgeon said Breastscreen 'got it wrong'...that would have been so upsetting for you to hear when you were still grappling with the horror of the diagnosis. I focussed on my mantra 'just deal with the next step' and 'just get it out'. This saying helped me immensely...'Worry is like a rocking chair: it gives you something to do but never gets you anywhere'. Another thing you could do is write all your questions and worries down and give it to your surgeon for further discussion. It might give you some peace. Take care...it's a scary journey.
1 year ago Place General
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Re: Gah. Back again.
Yuck, everyone's greatest fear. Your sense of humour is impressive, but you've beaten it once so Go Girl!!!
1 year ago Place General
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Re: Newly Diagnosed - scared of unknown
Hi Silvana, Welcome to the 'club'. You are in good hands. The early days of 'new diagnosis terror', tests, doctor's appointments and waiting...(so much waiting) is a nightmare, but you will get through it. I had a lumpectomy a month ago and 4 weeks of radiotherapy treatment starts in a week. I felt like my world had tipped on its axis since my diagnosis after a routine mammogram in July. I recovered well from surgery and have been encouraged and supported by this group as I faced each new challenge. Worry and anxiety is very normal but you will eventually will feel more hopeful of being your old self again. Be kind to yourself and gather your loved ones around you. Trust your care team and take one day at a time.
2 years ago Place General
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Re: Wondering if I should have decided on a mastectomy?
Oh thank you so much @kezmusc and @arpie. Such warmth and reassurance from people who've been there has eased my panic. Appointment with the radiologist tomorrow.
2 years ago Place General
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Re: Wondering if I should have decided on a mastectomy?
Thanks @arpie for your hugs. You understand exactly. The universe wasn't very kind to us was it!
2 years ago Place General
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Re: Wondering if I should have decided on a mastectomy?
Thankyou all so much for your kind words and understanding @Locksley; @Katie46; @arpie. Great suggestions. I have listened to a few of Charlotte's podcasts. Yes, I need to just take a step at a time and not 'overthink it'. I thought the anxiety induced by the diagnosis and crazy new world I'm in would settle once the surgery was done. My friends and family tell me I'm amazingly upbeat but I don't answer the phone of course when I'm down. I've been outside walking a lot and that lifts my mood. Losing my main support system (husband) two years ago makes it very hard to soldier on alone.
2 years ago Place General
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Wondering if I should have decided on a mastectomy?
I am recovering well from my lumpectomy (ILC left breast; clear margins and all 4 nodes removed clear)10 days ago but am now worrying about radiation therapy (awaiting appts with medical oncologist and radiologist). I thought I was fine with my decision after discussing lumpectomy or mastectomy with my surgeon but am now second guessing myself. If I'd had a mastectomy I wouldn't be subjecting my body to radiation. I have read that recurrence rates are pretty similar with lumpectomy or mastectomy so felt the less invasive surgery was better for me. This constant whirl in my head is really distressing me. I'm not sleeping. What should I do?
2 years ago Place General
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Re: Newly diagnosed with DCIS
It's a very scary, emotional time Cynthia_Plus_5. Cry as much as you need to. It mucks with your head and heart no matter how 'resolute' you try to be. Takes a while to process the shock of the diagnosis. I've just had a lumpectomy and while I'm recovering well, it's certainly not a ten min in and out thing. I can't imagine what a mastectomy must be like. This forum is a great support. Only do as much reading as you can cope with...often overwhelms you. There's a lot of waiting...tests, appts and pathology results. Very nerve wracking. Good advice above. Take care, LJS
2 years ago Place General
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Re: Lobular breast cancer just diagnosed
Some good news from my breast surgeon tonight on my MRI and PET scan results. Tumour in left breast may be smaller than first suggested (yay), but it didn't take up the dye well. Some activity on nodes and possible fibroid adenoma in right breast so she has suggested another specialised ultrasound early next week. No disease evident in rest of body. I am so relieved. We discussed lumpectomy as first preference for surgery on 13 August but if it requires a mastectomy, I'm okay with that. I just want the cancer out. I might sleep tonight!
2 years ago Place General
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Invasive Lobular Cancer (ILC)
This group is for anyone diagnosed with invasive lobular breast cancer (ILC), which begins in the milk-producing lobules and accounts for around 10% of invasive breast cancers (US statistics). Connect with others, share experiences, and access peer support from people who understand the unique aspects of an ILC diagnosis.
Flat Chat - no breast reconstruction
PRIVATE GROUP. This group is a safe space for those considering, actively choosing or not have had a choice to stay flat after a mastectomy. Whether personal decision or one shaped by circumstance, you're invited to connect and share your experience and images with others on a similar path. Information shared is based on personal experience and not intended as medical advice; always consult your healthcare team for guidance. ⚠️CONTENT WARNING⚠️Posts may include images of surgical outcomes, which some may find distressing. If you need support, please contact the BCNA Helpline—we’re here for you.

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Invasive Lobular Cancer (ILC)

Flat Chat - no breast reconstruction