No chemo suggested for Stage111a ILC

MaryC70

I am 70 yrs. old and just had a modified radical mastectomy(tumor was 8.5cm) with anxillary lymph node dissection (5 out of 17 positive nodes). I am otherwise extremely healthy and active.

I am Estrogen and Progesterone positive and Her 2 negative.  The cancer is a grade 2.  My Oncologist, a breast cancer oncology specialist, put me on Tamoxifen, and I will have 30-35 doses of radiation .  He is not suggesting chemo, as so many studies have shown that ILC is not as responsive to chemo as IDC is.  He is also stressing a very holistic approach with lots of exercise low fat diet, meditation, etc. I have been using meditation tapes since and after my surgery and they do wonders for me.

Would love to hear from others whose Onc did not suggest chemo.

JudyO

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.

MaryC70

Judy O.  I also have read that cheo doesn't do much for ILC.  I'm scared to death, but must trust the Oncologist.  He has many years of experience, so I trust him.  I will keep you posted, as I meet with him again in another week or so.

Kleenex

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

LizM

Mary,

It is somewhat unusual for someone with 5 positive nodes not to have chemo.  While I have read that chemo may not be as effective for ILC it is still the standard of care to have chemo with that many positive nodes.  If it were me I would ask my oncologist if the reason was due to age.  I have read articles about elderly breast cancer patients being undertreated.  A friend of my mom's was 80 when she had chemo for breast cancer and she did just fine.  You may want to get a 2d opinion.  The other issue I would discuss as well is whether to take Tamoxifen or one of the newer aromatase inhibitors Femara, Arimidex or Aromasin.  The aromatase inhibitors have been shown in studies to be more effective than Tamoxifen especially Femara for node positive patients.  If you are not going to have chemo you may want to push for Femara which is more effective at reducing risk of recurrence.  You may also want to get a 2d opinion on that issue as well.  There is nothing wrong with getting 2d opinions in fact it is recommended that patients do so.   

sandogger

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.  

VBK1944

Hi Mary, I am 64 and have a similar profile to you but with 3+/12 and a 2.6cm ILC. I would gladly skip chemo if my recurrance/survival chances would not be compromised by doing so. I will post my oncologist's recommendation when I see her in about 1 week. I am also have my tx options researched thru a free BC organization in my area...

bevsteed

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. 

PrincessKauai59

I agree that a second oncology opinion is always a good idea, especially since you say you're extremely healthy and active and so may be younger than your years suggest.

I believe that the data show less relative benefit with the addition of chemo to hormonal therapy as we get older.   You can look at adjuvantonline.com with your doctor to discuss.   The good news is that since the tumor was ER/PR+ you get the protective benefits of hormonal therapy.  Blessings and good luck.

marshakb

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.

barbe1958

I was going to say what Marsha just said. Tamoxifen is for PREmenopausal women! What was he thinking?

He may be considering your quality of life with chemo as well. With a possible 10 year window of no recurrence, perhaps he wanted you to have that time without side effects? As a healthy 70 year old, he may not want to compromise that. At 50, I don't want chemo! Or rads! I would rather have this time as mine without the constant reminder of cancer (except no breasts). I'd rather have a good 10 years now and deal with the rest later.

Having said all that, of course a 2nd opinion is warranted by virtue of the fact that you aren't comfortable with his suggestion. It must be what is right for you. 

PrincessKauai59

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.  

Anonymous

From one Princess to another! lol Sorry you had to join us... but we will help you through this. Wanted to let you know that I am post-meno (although just for the past 3 years) and taking Tamox. My Onc and I have had numerous discussions re: switching to an AI. Here's his take on it: it does have a slightly higher success rate, it's been around longer, it's had the most research/studies, doesn't cause bone loss, doesn't cause joint aches... AND the biggie is that if you stay on Tamox for 5 years you then have the option to continue treatment with an AI. But if you start with an AI - after the 5 years... currently there's nothing further available. I don't want to scare all the AI girls... each situation is different.

I do agree with all the other girls... a second opinion is a good idea. Best wishes to you. Keep us posted - we're here 24/7!