Lobular Breast Cancer: Let's share and support each other

Posted by mjay @mjay, Jul 28, 2022

Since lobular breast cancer is only 10-15% of all breast cancer diagnoses and now understood to be a unique subset of breast cancer as a whole with different characteristics than ductal breast cancer necessitating different treatments and inherently different risks, I would like to see a separate category under the breast cancer forum so that the most appropriate info is being disseminated for this specific subset of BC. Just a thought.

Interested in more discussions like this? Go to the Breast Cancer Support Group.

Profile picture for timely @timely

@moloney1231

Did you have radiation and take an AI for 5 years?

ILC usually gets one through the 1st five years cancer free

Were you over 70 when you had your lumpectomy?
Thank you for this information.
I am ILC 1B and coming off Letrozole after 2 1/4 years and have to decide what to do next.

There are absolutely no right answers as everyone is different.

That leads us to make tough decisions.

Jump to this post

I was on AI for 7.5yrs which I asked to go on longer because I read some study that it could be helpful and I tolerated letrozole very well.
I was 48 when I was first diagnosed. 12 yrs ago they lumped lobular cancer in with all cancers and prescribed chemotherapy. Now they know chemo is not helpful for lobular- so you newly diagnosed have that going for you!

REPLY

@moloney1231

Did you have radiation and take an AI for 5 years?

ILC usually gets one through the 1st five years cancer free

Were you over 70 when you had your lumpectomy?
Thank you for this information.
I am ILC 1B and coming off Letrozole after 2 1/4 years and have to decide what to do next.

There are absolutely no right answers as everyone is different.

That leads us to make tough decisions.

REPLY
Profile picture for llthomson @llthomson

Anyone chose lumpectomy instead of mastectomy for stage 3 invasive lobular? And has the cancer returned? Thank you for sharing.

Jump to this post

I had stage 1 invasive lobular with lumpectomy/ radiation. It came back 12 yrs later. 2nd time had double mastectomy. As I have said before I wish I had the mastectomy’s the first go around. But it is a personal decision.

REPLY

Anyone chose lumpectomy instead of mastectomy for stage 3 invasive lobular? And has the cancer returned? Thank you for sharing.

REPLY
Profile picture for kathy88 @kathy88

my oncologist turned me over to pcp. she said she has not mental health experience and i should take gi cocktail for stomach pain. the meds they gave me for mental pain gave me stomach ache. i am going to try to calm down. i did not do my exercise instead tried to relax before church. i have to calm down cause i start thinking dark thoughts and i don’t like them.

Jump to this post

Hang in there....life can only get better! I agree with a previous comment to see another oncologist in your area - while they have the same tools in the tool kit they might chose a different approach or select a different med for you. To be honest, I would look for a second opinion from two ends of the spectrum; one from an oncologist who has been practicing a long time (these days you can google them and get info about length of time practicing, where they got their degree, specializations, etc) and another (three opinions!) who recently began practicing. I say this because the long time physician should have seen just about everything and helped manage a lot of conditions and the young person because they are fresh out of training and will be up on the most recent advances or thoughts in how to manage BC. Although physicians are required to complete continuing medical education that don't always embrace new thoughts the way the young folk do. So take a deep breath, step into the light (shut down those dark thoughts), and regroup; find the support you need by seeking second opinions. I will you well...

REPLY
Profile picture for cog81 @cog81

I have invasive globular #2 two lumpectomys now scheduled for complete mastectomy as cancer is in chest muscle.

Jump to this post

@lifetravler
Thank You for the hug. I send You a hug as well
COG81

REPLY
Profile picture for Colleen Young, Connect Director @colleenyoung

@mjay, great idea to bring women with lobular breast cancer together. @jackiestack and @ssalget, can you share more about your diagnoses?

I think @claudiamaria @ja5747 @marybe and @bowhunt1969 @cindylb @kszilvia @varalax @rarelybees2889 @nycoceans @lisman1408 @elsie37 @nobody may also want to join in.

What's you lobular breast cancer diagnosis? How are you today?

Jump to this post

I have invasive globular #2 two lumpectomys now scheduled for complete mastectomy as cancer is in chest muscle.

REPLY
Profile picture for sharonandkathy @sharonandkathy

Thank you so much. I'm 4 weeks out and still have extreme tiredness. I wish this would go away. It feels like I'm dying. You are the first person who has experienced the same. Are you still having the symptoms?

Jump to this post

I am just ahead of you at just over five weeks out. I started to feel less tired last week - I think I napped three or four days. Following I felt a need to nap just about every day. Grateful I could nap...

REPLY

my oncologist turned me over to pcp. she said she has not mental health experience and i should take gi cocktail for stomach pain. the meds they gave me for mental pain gave me stomach ache. i am going to try to calm down. i did not do my exercise instead tried to relax before church. i have to calm down cause i start thinking dark thoughts and i don’t like them.

REPLY
Profile picture for kathy88 @kathy88

7 years remission, tired and depressed taking meds but they give me stomachache or can’t sleep.
At 5 years i was ned and i asked my oncologist did she think i would be ok but she said oh wound never say that, i don’t want to jinx anything. oncologist quit me back to pcp, they are very busy. i just hate my life, in remission but why can’t i let it go and relax and have a life. thanks im going to exercise now

Jump to this post

You can consult another oncologist. They vary greatly on opinions. Life is to short to feel depressed and tired

REPLY
Please sign in or register to post a reply.