No chemo suggested for Stage111a ILC

Maryc70...I had chemo but am very interested in hearing what reponses you get. Since my dx I have been doing a lot of research. It gets so confusing. I have read many studies that say that chemo doesn't work very often for ILC. I also have read that tamoxifen doesn't help sometimes with ILC. My onc put me on arimidex but so far I haven't found any information on how that works with ILC. All of this is very confusing and scary. The chemo was awful and I can't even think about what it might have done to my body. I am still very healthy but notice my energy level is lower. I was very healthy and pretty active too. If they think you don't need chemo you are lucky.....My surgeon told me ILC grows slowly and that may be our positive.

My onc didn't offer me chemo. I had an Oncotype DX test done (I had clear nodes) and it showed that, based on my tumor's genetic profile, chemo wouldn't be helpful in reducing my risk of recurrence or spread. I'm on Tamoxifen, which allegedly will reduce my risk of recurrence and spread because my tumor was very hormonally receptive.

I have also heard that ILC isn't often as responsive to chemo in general. I've also heard that it is more likely to come back later, perhaps 10 years later, rather than in the short term. So it's likely that your doctor felt comfortable with good local control of the cancer - the surgery and the radiation - and that the Tamoxifen will protect you after that. The chemo's side effects probably weren't worth the benefits to you.

That said, I wish there was more ILC-specific information out there.

I have also heard that lifestyle factors - exercise and diet - can reduce your risks by up to 40%! So keep up the exercise and meditation! Good luck to you.

Coleen

I am wondering if your doctor has this approach due to your age.

My cancer is 7.9 cm and I am having chemo prior to surgery.  The reason is due to the size of the tumour. I was diagnosed in Nov. 08 and was 51 at the time.

I was told that some women over 70 do not do well with chemo by my onc..  My mom was diagnosed with stage II ovaran cancer at the age of 73 and she coule not tolerate chemo. 

Please try and get an answer specifically as to why they are not giving you chemo.

I have found that you have to be your own advocate for your health.

Good Luck and God Bless you.  

Mary: 

I would suggest you get a second opinion.  I have Stage IIIA ILC, with largest tumor being 8.5 cm.  I did 4 months of neoadjuvant chemo.  My tumors and involved lymph nodes have all disappeared as per MRI and digital mammogram with ultrasound.  I'm living proof chemo can work on ILC.  I'm having bi-lateral mastectomy next week.  The age issue may be playing a role here.  Consider a second opinion.  If your doctor is a good as you say he is, he won't be offended.  God bless and good luck. 

5 postive nodes and a large 8.5 tumor with no chemo??  You definately need a 2nd opinion.  Especially since he also but you on tamoxifen instead of an AI.  Tamoxifen is for PREmenapausal women and I am assuming at 70 you are post menapausal. 

As for the chemo not being beneficial to ILC, I question this somewhat.  There are ALOT of ILC women here who did chemo before surgery and there tumors had dramatically shrank when they had their surgery.

Hi MaryC, I talked with my Oncologist about the tamoxifen vs. AI issue for you today and she basically said that there are circumstances where a reasonable (and good) Oncologist might pick tamoxifen over AI for a postmenopausal woman. 

As a point of reference, the benefit of AI's over tamoxifen for postmenopausal women is about 3-4%.  If a woman had osteoporosis, however, tamoxifen might be chosen over AI.  Another senario might be if a woman was having intolerable side effects with AIs, then tamoxifen would remain a good alternative option for them.  I know a woman who has made a financial decision to use generic tamoxifen over the brand name only AI drugs because she pays for all her own meds and says she can't afford the AI (in this case her doc wanted her on an AI).

Still, it's not clear that he has included you in the decision process here or confirmed your understanding of his choices for you.  I wish you the best.