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Lobular Breast Cancer Mets

7 REPLIES 7
worriednow
Member

Re: Lobular Breast Cancer Mets

Hello trying to follow your post. How is mum doing? Does she have regular scans once in 3 or 6 months? Any side effects from harmone drugs . Iam yet to face another scan and then maybe harmone . Chemo is still going on . 

worriednow
Member

Re: Lobular Breast Cancer Mets

Hello how are you doing? I feel happy when I hear positive news from all of you brave ladies. It gives me the strength to face this battle . Are you on harmone now. Do they scan you evry 3 or 6 months ? 

worriednow
Member

Re: Lobular Breast Cancer Mets

Hello lovely 

felt relieved reading your post. Iam also diagnosed with lobular ones doing bone mets. Going through chemo then ct scan then maybe harmone drugs . Just a scary journey 

Secondarysister2
Member

Re: Lobular Breast Cancer Mets

Hi there,

I know it sounds cliche as so many people say this, but once you are on a steady treatment plan you will get to a ‘new normal’. My mum was diagnosed exactly a year ago now with lobular bc in the bones. She has scans coming up in October, but has been stable since her diagnosis. I know my mum is happy, pain free and enjoys life as much as she did before. If not more so!! My mums diagnosis hasn’t held her back from anything at all. 

There are many women on here who are living with secondaries for a long time. Not just one or two women either. This gives me a lot of hope! I love reading other people’s positive stories! I live for them! 

My mum is on a cocktail of Ribociclib, letrozole and Denosumab. Occasional stiffness with the letrozole and watery eyes with the Ribo. But it’s a small price to pay for stability!!

It sounds like you are off to a good start if you’ve had a positive response to your treatment already! Keep us updated with how you get along. Sending you love and positive vibes! X X

worriednow
Member

Re: Lobular Breast Cancer Mets

Hello my daignosis is also lobular breast one. I have it in my bones. Iam having chemo praxicemetal . 6 more to go. My scan was showing improvement and tumour shrunk . Bones showed scars . Don’t know what next when I meet oncologist. I will have another scan for sure. Maybe harmone 

SecondarySister
Member

Re: Lobular Breast Cancer Mets

Thank you so much for your response!!

Big day tomorrow when my mum meets her oncology team and they will discuss prognosis and treatment options!! I know my mums is estrogen positive too. I don’t know about the HER2 status yet. I’m very anxious about it all. I just want some positive news from them. 

I thought it was slow growing too, but it’s a sneaky bugger!

Stable scans are definitely good news 😊🙌  pleased to hear your treatments are working well. If I get my mum to stable, I will be happy! 

lollypop84
Member

Re: Lobular Breast Cancer Mets

Hi, 

I also have lobular breast cancer with mets to my spine, I am 36. I was diagnosed in January this year. I am er+ and pr+ and her2- also grade 2. I am on hormone treatment of ribociclib, letrozole, zoladex and a bone strengthening injection of denosumab. I had a stable scan in May ( no further spread ) and I am due my second lot of scan results this Thursday! Once your mum has a plan in place hopefully she will feel better. Lobular is slow growing which is good! X

SecondarySister
Member

Lobular Breast Cancer Mets

My mum has been recently diagnosed with secondary lobular breast cancer. Primary diagnosis was back in 2010. It has come back in her bones (femur, sacrum, spine, skull and one rib). So she has quite a collection of lesions!! 

I have read lobular is grade 2 and is a slightly more slower growing cancer. It only accounts for 10% of BC cases! 

I’d love for people with lobular breast cancer to share their experiences / information on treatments and any positive stories ect... 

 

We havent seen anyone from the breast cancer care team yet, so I’m out to do some research and get some knowledge and support! Thank you! 🙏🏻