ILC vs other breast cancers

Interesting

fightn4fam, I'm on tamoxifen as I have osteoporosis so I can't take AI's.  I'm working hard to get my bones stronger so I can get back onto AI's.  Until more research is done we have no way of knowing whether the current ILC treatment is the best, so we can only hope we're sensitive to tamoxifen.

Sheila, there is no way of knowing whether the tamoxifen worked for you as lobular does tend to hibernate for longer than IDC anyway, and ten years is not unusual now with IDC due to the hormonal treatments.  I suspect we're all unique anyway.  

I think it would be useful to know how many with ILC stage IV have gone into remission with tamoxifen or AI's compared to those with IDC.  I think the five year survival rate is used or they'd have to wait another five years before releasing drugs if they had to wait ten years.

-Sheila- 

I saw the oncologyst yesterday.  My surgery was on May 9th.  I opted for the bi mx.  Stage IIa 1 node our of 12.  he told me given the one node and high ER/PR status that they could run the onco type test.  I am pre-menopaus and running the test in this case is newer, but not considered a trial. Not sure what that means exactly.   If the score comes back low enough I can get away with not doing the chemo and go on tamoxfen. If it gets to the mid range he will give 4 rounds of the TC protocol.  No adriamycin!  I think he said they use that when the chacteristics were more unknown.  has anyone heard that!  At any rate i am relieved because of the side effects   Hoping for a very low score.  Two week wait!

CML0310 - When you talk with your MO about chemo you might want to ask how your ILC diagnosis factors into the decision. I've heard (but have not seen a study) that ILC Grade 1-2 doesn't respond to chemo as well as IDC or ILC Grade 3. 

Merilee-thanks.  Nurse-Ann and Gabby Cal I asked my MO the question of ILC not responding he also said that it has more to do with the high estrogen levels than the ILC itself.  I think that was why he suggested the oncotype test.  Mine was 90% ER+ according to the pathology report and a grade 2.   I am anxious to see how my results come back!  My MO has a very similar background as yours, and he is actually the head of MO team so I know he knows what he is talking about.  to be contined.

nurse-Ann,

Thank you so much for the information from your Onc. I have classic ILC Stage IIa, grade 2, no nodes, ER+ (100%) and PR+ (75%), HER neg. so that makes me believe that I'm not a great candidate for Chemo. I will discuss treatment with my Onc on Monday and now I can at least challenge the idea of chemo (which is what he has in mind I believe). I am located in Germany so information from the US is of course always helpful.

Thanks for all your great posts. I have found tons of valuable information on this site.

My Onc told me the only reason for chemo in my treatment was due to angiolymphatic invasion. CT 6 rounds.  I'm ER 95%+ and PR 65%+, Her2 neg. 

I'd like to know if there's a blood test for detecting errant cancer cells circulating in the blood or lymphatic system, if there is one?  

I asked for a benchmark for where my cancer was before treatment so I could see the results of treatment and told there was no benchmark for cancer in the lymphatic and angio vessels. I do know it's how ILC and IDC goes to mets.

A blood test would sure be a great screening test over long haul for me, if there is one.

Hugs,

Kat 

Dixiebell - Thanks for bumping this topic. So few of us have the ILC diagnosis I appreciate the chance to learn from each other.

Maybe484 - Yes, ILC typically is strongly ER+. 

Saw the onc today. He said my cancer is very agressive and due to my young age (hey have not been called young lately) he wants to do rad, chemo and hormone supression for the rest of my life. Getting second opinion on Thursday this seems very agressive. He said with my size tumor 5mm its unheard of to be in the lymph nodes (my surgeon said the same thing). I had decided to do surgery only no other treatment but this onc tells me its sucide.

Katerina my onc said there is a test to see if any cells "floating around" but they dont know what to do with the results yet. Therefore no one orders it except in studies.

dixiebell - My diagnosis was a year before yours. I had a 0.9 cm ILC with 2 very large positive nodes. One was 2 cm and 1 was 1 cm and both had extracapsular extension. My onc also said that I had an aggressive cancer but my oncotype came back at 12. Did your surgeon send the tumor for oncotype? It has to be a certain size but if there is enough tumor to evaluate, it may help you answer the question about chemo or no chemo.

I actually started chemo before the oncotype came back and I continued it inspite of the low score because the studies in women with positive nodes is based on relatively small numbers and 3 MO that I saw were all in agreement that I should have chemo. There was a study presented at the ASCO conference this year that showed significant decrease in risk of recurrances in women who had radiation and 1-3 positive nodes. My breast surgeon and MO both told me definitely radiation and the RO agreed.

I had bilateral mastectomies and reconstruction last month in NOLA. The breast surgeon was from Covington and I loved her!

It's great that you were able to schedule a second opinion so quickly. The initial time when you're trying to come up with a plan is definitely the most difficult. The treatments are not fun but they are managable. I hope that you come up with a plan that you're comfortable with.

It's interesting how we get the "aggressive" prognosis yet they can't really show us growth factor; how fast and how is it being measured? What's the test? 

ILC is not known for it's aggressiveness. I was misdiagnosed for years but when they did finally diagnose cancer the tumor was 12.5cm with 3 lymph nodes positive and one measuring 2cm. But it was there for years...

I think that having high ER+ is aggressive because we have ovaries and pitutiary and other glands that all produce Estrogen.  But like everyone is saying, chemo doesn't respond as well to ER+. I was told chemo wouldn't help my tumor or really the ER+ aggressiveness aspect but it would kill the cancer floating in my angio/lymphatic system.  Hmm, I'm not from Missourri but I want them to "show me".

Aggressiveness I thought was a function of cancer type, ER/PR status, and Mammoprint which is a test of how aggressive the cells are dividing versus Oncotype type which is recurrence rate based on pathology of the tumor after surgery.  Maybe I"m wrong on tihis.

I was told the best treatment for my BC ILC was: 1.Surgery, 2.Radiation and 3. Anti-hormone therapy. And best treatment for cancer in my blood system (angio-lymphatic presence) is chemo.

Dixiebell - I really hope you get a second opinion or even a third, 

 Hang in there ladies. 

Thanks ladies great feedback. Seeing the third onc tomorrow. I was told by the other 2 the oncotype was not valid on node positive breast ca. Yet I have read about so many people who's drs are ordering and using the results on node positive diagnosises. My surgeon said he definately got the entire area of cancer and does not think I need radiation. (I trust him he wanted to do a lumpectemy with radiation but said with my more agressive approach of bmx and him removing the entire section of nodes I would not need rad.) My friends keep telling me I am just going to keep going to drs until I hear what I want but this is it. I will hear what this onc says (spoke with him on the phone and he ordered the oncotype, hope they have enough). Then I will take the best approach based on what science says. Ok wisk me luck. Was supposed to go Thur but TS Lee messed me up, So tomorrow at 2!

Thanks toomuch. I am assuming the study said radiation needed?

Thanks Tina!!!!!! Its sad that the doctors are not up on the latest info. I guess I should have gone to md anderson.

Dixiebell - I haven't been posting because others on this thread are doing a good job and I didn't want to be redundant. 

I did want to clarify one point (with apologies if this is redundant) - Radiation treats the local area. It's purpose is to kill off any remaining cancer cells that may remain after surgery. Chemo treats the bloodstream/rest of the body. It's purpose is to kill off any cancer cells that are circulating through your body.

Remember that the OncotypeDX is a test to predict how successful chemotherapy will be on your specific cancer cells. It's just one more data point to be considered along with your pathology. My personal opinion is that the OncotypeDX is less reliable on ILC than on IDC. There was an informal survey on this board in which patients with ILC had a disproportionately large number of "intermediate/inconclusive" results. The study on which they base their metrics only included IDC cancers.

I "second" the advice to meet for a consultation with an RO should radiation be considered. It's important that you and your RO are on the same page and that you are comfortable with the facility. If you decide to go that route, you'll be there every day for several weeks. If you have a choice between more than one facility, even logistical things like parking, check-in, waiting area, do they give patients robes/gowns, etc. can make a difference.

You're doing a great job of seeking out the best medical team for your treatment. You are your own best advocate. Good luck. I'll be checking back for your updates.