ILC Scared of Aggressive Treatment

can you get a second opinion? I would strongly advise that, good luck. 

Hi Captswife.  I am sorry that you are here - but you are well surrounded by fabulous women (and men!).

I also had ILC - my tumor was 3.5 cm (no cancer in sentinel lymph node) and my Oncotype was 21.  I did not have chemo. 

I am not suggesting that you base your decision or your treatment on my situation, but I as well would strongly recommend getting a second opinion.  Just my two cents

It would be great if you could post your Dx history in your profile - that way others that may be able to help you will have a better overall "view" of your Dx.  (ie:  ER, PR .. Her2 .. how many lymph nodes, etc ..).

Hugs!
MD

Hi,

I had 2 separate tumors each 1 cm one ILC and one IDC. My oncodx score was 34. I didn't do chemo even though it was recomended.

So far so good 3 years and counting.

Hi,

I had ILC in 2006 and had a lumpectomy and radiation followed by Tamoxifen.  Four years later, I got it back so this time I had chemo followed by surgery followed by Arimidex.  My Oncotype score was a 9.  When they started giving me chemo, you could see the cancer going away that was on my skin and it shrunk the tumors inside of the breast.  It did not totally remove them.  I hated chemo and would not recommend it to anyone but I'm doing really well now with no sign of cancer.  Good luck!

Captswife--I've been in a similar situation, but with more positive nodes.  I had chemo first and found that although it did not completely remove the cancer, I felt the tumor decreasing with each treatment.  I agree with what everyone has already said above.

I wanted to address your question about lymphedema.  Yes, it's very possible with an axilllary node dissection and/or axillary node radiation.  I have it myself.  The cording and pain that you are feeling now after the axilllary node dissection is probably not lymphedema.  That is the process of the lymph channels sort of dying and dissolving.  Good physical therapy can help.  Lymphedema is usually not painful, just somewhat uncomfortable and annoying, and is characterized by swelling and enlargement of the arm.  Mine did not onset immediately.  Nonetheless, it's a good idea to get with a PT as soon as your surgeon will release you to do so, especially one trained in lymphedema management and manual lymph drainage.  It's a good idea to get a sleeve for preventative purposes.  I noticed that you are in New Orleans, and I would highly recommend contacting the Center for Reconstructive Breast Surgery there which is the major center of excellence in the U.S. for lymphedema and lymph node transfer, as well as reconstruction.  If they will not let you see their PT because you're not in the midst of recon, perhaps they can recommend someone.  I just had reconstruction there 2 weeks ago, and I had a number of appointments with the lymphedema PT and highly recommend.

I too had ILC, positive nodes, but 2 c. and grade 1 (borderline).  So I went for everything and the kitchen sink knowing that I might only have one chance to kill the beast. I was afraid of aggressive tx but everything I had based my fears on were seeing chemo patients a long time ago puking, sick for months, etc. It wasn't like that at all. I did lose weight, but that didn't break my heart.  I lost my hair but it grew back thicker and with more body (go figure). I'm glad I decided to give it everything I had re: tx I knew I was strong enough and I didn't want to look back and worry that I hadn't done anything.  Now I'm on arimidex after 18 months on tamoxifen.  I did get a second op, though, and I agree with the other posters:  you should, too.  Hang in there. You'll be okay.

Claire

I should have added in my comment that like claireinaz, I have absolutely no regrets in having chemo.  If I did recur and had not had chemo, I would always have wondered what if.  So, I am glad I wasn't really given any other choice.

From another thread re: ILC Grading - Grade 2 ILC is different that Grade 2 IDC:

As to why most ILCs are Grade 2, but generally called slow growing is an
artifact of how they calculate the Grade. There are 3 components, each
scored from 1-3. The one that measures extent of lobules always scores a
3 for ILC...that means that to get bumped into a grade 2 (a total score
of 6) you just have to have one "non 1" score on the two remaining
measures, mitotic rate (how fast the cells are dividing) and another
measure about how abnormal the cells look. If you have your pathology
report you can look at the mitotic score...and most ILCs are 1s or 2s
for this measure, so slow or relatively slow.

Grade 2 IDC is not the same as a grade 2 ILC, since the IDC by
definition didn't score more than a 2 on the extent of tubule formation
(my mistake earlier - it's "tubule formation" not "lobule formation",
which means that to get kicked to a grade 2, an IDC must have a 2 and a 2
or a 2 and a 3 at a minimum for the other two measures ("mitotic index"
and "nuclear pleomorphism" (how abnormal the cells are) to get a total
combined score of 6 or 7, which is the grade 2 range.

Here is the citation for an article about grading ILC's Modern Pathology (2005) 18, 621–628,; doi:10.1038/modpathol.3800273

Invasive lobular carcinoma: to grade or not to grade

Lisa137, exactly. It is an old saw and only really refers to the fact that pathological complete response is more rare in ILC than in IDC. Either way, it is not common, and it has more to do with the grade of the cancer than with the type.

Captswife, I agree with the others that you should seek a second opinion, preferable from a major cancer center. Mostly because your oncotype score is low, not because your cancer is lobular.

"Long and scary road" certainly describes how I see it too.  I was diagnosed with ILC in June, and my world has been turned upside down!  Im post-bilateral mastectomy, about 5 weeks ago.  My oncotype score came back last Friday-- 20.  Ugh! my doc referred to it as "low intermediate" range.  Its such a grey area.  I have no node involvement and am leaning towards no chemo, but will have to have to explore all options with the doc this week. I dread chemo.  Already feel my body has been beaten up and could use a break, but don't want to make a mistake and regret not doing chemo.  I relate to how hard these decisions are.  Good luck my dear.