Invasive Lobular Carcinoma

seanacharles

A member of my family has recently been diagnosed with Invasive Lobular Carcinoma.  She has had a masectomy, her results have shown, that this has affected 21 of her lymph nodes. She starts chemo & radiotherapy on Tuesday.  Does anyone have any advise about this?  As I am really worried.  I have read other peoples articles, but they only mention it affecting a few of their lymph nodes....nowhere near 21.  Can anyone give me any advise on this?  Has anyone else been through the same thing?  Please help.

lolmarsha

Sorry to hear about your family member.All i can say is I'm a 22/31 nodes.  all taken out. No chemo or rads to the breast area. Just femara & zometa. That person should watch out for lymphedema.some one else will be along to help you out more then I can.

Gitane

Hi.  It sounds like her doctors have been very proactive in her treatment.   What have they told you about her staging?  What are her ER, PR, Her2 levels?  What chemotherapy will she be receiving?  Talking to others helps a lot.  Perhaps your family member will feel comfortable coming to this site to do just that.  She is not alone in this.  Best of luck with treatment.

LindaLou53

Hi Seanacharles.  Sounds like your family member is getting good treatment information.  It is always hard early in the process to deal with the diagnosis and then face treatment which may seem scary and never ending, but it is definitely doable as many ladies here can attest to.

I had Invasive Lobular diagnosed in 2005 with 23 nodes all positive for cancer.  I had chemo and radiation, am taking an Aromatase inhibitor daily, IV Zometa every 6 months and will be 3 years out from my diagnosis in November. So far I am NED, feeling good and the chemo/rads is a distant memory.

It would be worth discussing IV Zometa with her oncologist once all chemo and rads are completed.  The latest clinical trials show very positive results in Zometa reducing the risk of bone mets and possibly mets in other organs too.

Your family member will also have a lifetime risk for lymphedema and should learn the preventive steps to help protect her arm. It is always a good idea to see a specially trained lymphedema therapist who can do baseline measurements and teach her the early warning signs, so treatment can be started right away if it becomes necessary.

Having a lot of affected nodes is always a concern, but it does not necessarily mean that successful treatment is not possible.  Other factors such as hormone status, grade and stage as Gitane mentions will need to be discussed with the doctor to get a more complete picture.

Hang in there.  Tell your friend there are many of us here who can help shed a little light on the path that is facing her.