ILC Treatment Options

Chemo works on the currently active cells that may have already entered your bloodstream or lymphatic system and kills them. This stops them from setting up shop in your bones or organs and growing into tumours at a later stage. This cuts down on the chance of recurrence in the future.

Yes it has been documented that exercise can help drop reoccurrence rates by as much as 20% in some studies. It is not clear whether lowering your body fat prevents reoccurrence some studies say yes, some say no. However the idea behind it, is that fat makes oestrogen and if you are ER+ then the less oestrogen your body makes, the better your chances are for no reoccurrence. The tamoxifen is used to lower or eliminate oestrogen. Tamoxifen has been absolutely proven to lower reoccurrence rates by up to 30%.

There is now an online calculator that can predict if continued use of Tamox or an AI drug after 5 years completed will be beneficial or not.

As you are so early stage, I would guess that your chances of reoccurrence are very small. ILC is know to be slow lazy cancer when caught early, not aggressive. No one is safe from recurrence but Stage 1A ILC has an excellent prognosis.

Decisions about forgoing medication and changing lifestyle instead of using conventional therapy are entirely personal. I would discuss this clearly with your Drs. But changing lifestyle for healthier eating and exercise is always going to be beneficial, whether it reduces chances of reoccurrence or not.

Good luck.

I am stage 1a, but I had ITC's found in 1 lymph node, so in my case I felt that my cancer cells were clearly out and about looking for new places to set up shop. The standard recommendation for my situation is to not do chemo, but in working with my MO it was determined that chemo could have some benefit and I chose to take it to hopefully kill those wandering cells. ILC is often lower grade, but mine is grade 2 with pleomorphic features, so hopefully the chemo will work on the wanderers.

Hello. May I ask you more about the treatment?

Mika, you sent me a PM...I don't know that there's any one way to think we can beat this ugly cancer. Some gals really make a 180 change and others keep doing what they had been, since they were healthy and doing things "right" all along. Cancer is a crap shoot. Eat well, eliminate as much stress as is possible, have friends and family around that are loving....and live life till you can't.

I agree do the best you can to live healthy and enjoy.

Hi Ladies, I was diagnosed with ILC in August 2019. I am told I'm stage 1B since the tumor was small but has spread to 2 lymph nodes. I feel another lymph node on my collarbone that is swollen but not hard and the doctor doesn't think it is cancer. Also the left arm that was diagnosed with C is feeling numb. What are the signs that ILC has spread since it doesn't create lumps? Do you have any experience with numbness of the arm after the surgery? It is getting worst. X-ray didn't show much.

Hi Lilly,

arm numbness could be due to nerve damage after surgery, my surgery was in April and I still have some numbness in / near the armpit and in the upper arm.

If you are concerned about a lymph node, I would insist on an ultrasound. I would also ask for a referral to a physiotherapist with experience in lymphedema to rule it out. It is unlikely with five nodes, but better safe than sorry.

Good luck and keep us posted!

Thank you so much Ladies. I have not regret on my decision for double mastectomy but I'm regretting the decision to have breast reconstruction. I don't have lymphedema the nurse told me, the arm is not swollen and I was OK after surgery. It is lately that feels strange and I can't have certain scans because of the metal part on the spacers. Even thought ILC is very sneaky and doesn't create lumps to be shown from scans. My node invasion did not show on the scans either. This is what makes me nervous.

JRNJ, may I ask you why did you doctor decided Chemo and radiation in your case? I was told to only use Letrozole since radiation and chemo won't be effective.

Thank you again and the idea that the spacer maybe pressing in a nerve. Makes sense to me

I had BMX for ILC in both sides, and sentinel nodes taken on birth sides. I had numbness in the backs of my arms for months after surgery. I'm 7 months out and just recently realized that the numbness is gone.

Kind of funny, but when the PT touches my armpit it is ticklish again, and it wasn't for the months after surgery.

Thanks Mac5! So glad it’s working!! I know you said on the other post they didn’t think it was. Remember cmf is more treatments than TC it’s supposed to be more slow and steady so hang in there! I think I suggested on the other post you might want to consider every other week. I’m doing fine on this schedule and feel good the second week. But I think you have more health issues than me.