Topic: ILC (pre-treatment)

Apr 25, 2008 08:50AM - edited Apr 25, 2008 08:53AM by sunrizes2

Hi Mary

In my opinion, absolutely, have a second opinion and a third if thats what makes you feel secure.  Get all the information you need.  Knowledge is power.

Best of luck to you

Linda 

Apr 25, 2008 09:00AM - edited Apr 25, 2008 09:03AM by LindaLou53

Hi Mary,

Sorry you have to deal with this.  If it were me I would get an appointment with a specialized breast cancer treatment center where the surgical, medical and radiological oncologists all work together as a team and review a patient's history together when making treatment decisions.

It is true that for many of us after initial diagnosis from a biopsy, will see the surgeon to discuss removal of the tumor, but there are many other factors to consider such as tumor size, tumor type, patient age etc. which can determine whether or not surgery is recommended as the first phase of treatment.

That being said, I believe for many women in your age group and particularly with Invasive Lobular Cancer, chemotherapy is much less likely to be used except in situations of known locally advanced growth with nodal involvement or possibly in the case of a hormonally negative ILC, which is rare.

Detecting tumor size and nodal involvement is not a perfect science with any of the scanning techniques, but I do believe that MRI may be more reliable in the case of ILC.  Many women's ILC tumors are never picked up by standard mammogram or ultrasound, but a MRI can pick up the tumor more reliably.  Size is often over-estimated or under-estimated by scans, however, and nothing short of surgical removal will be totally acurate.

It is so good that you are asking these questions now, so early on in the process.  I would definitely want to set up an appointment with a medical oncologist as my first step to discuss the specifics of how she would envision your treatment plan to be, based on what they currently know about your tumor.  Things may always change after knowing for sure if there is any nodal involvement, actual tumor size and hormonal status, but at least she can give you a general feeling for what is most likely to be your treatment plan.  Discuss with the oncologist which scanning methods she would prefer to gain as much accurate information as possible prior to any surgical intervention. 

At that point, make sure you see a surgeon who specializes in breast oncology.  You do not want to go to a general surgeon who only sees a breast cancer patient "on occasion".  If you have a breast cancer center in your area, finding a medical oncologist there will give you access to all their resources including the surgeons and radiologists who specialize in breast care.

Do not let anyone make you feel rushed during this very important decision making process.  Taking a few more weeks or even a couple months to fully explore your options will be well worth it.  Once you have a treatment plan in place with a team of professionals you feel you can comfortably communicate with, you will be well on the road to recovery!

Let us know how it goes.  Continue to ask questions as they arise and you will find tons of good information here on these forums.

Apr 26, 2008 07:11AM gracejon wrote:

i don't think doctor referrals are in any special order.  I do know that course of treatment over the almost four years since my diagnosis have changed dramatically.  In some instances surgery is delayed and hormonal therapies and medicines theapies are given before surgery in more numbers than ever before.  I also suspect that the day is coming for some tumors to be treated by medicine alone if this is not even an option already.  I do think that a good oncology opinion prior to any surgery is an absolute necessity these days.  I do think surgeons in general, since they need to sell themselves more often, more personable than a droll medical oncologist.  I would try to get both that specialize in breast only and not a doctor that does it all if possible.  My rationale for that is again therapies are changing almost daily and I think the breast specialists keep up with it cause it is only what they do.

Jun 29, 2008 11:46AM AdrienneE wrote:

Hi.  I was just diagnosed with ILC a few weeks ago.  Saw a local surgeon first (right now they have me scheduled for a lumpectomy the week of July 22) and he has me scheduled for an MRI of both breasts on Monday.  Every question I ask about tumor size, grade, stage, receptors, etc., is met with "We'll know after surgery".  Is that typical?  Is it true that they can't tell me anything until after surgery? 

My insurance will pay for me to go to M. D. Anderson in Houston (a cancer center). This would mean a trip out of state and I would probably stay there through the treatments.  I have a couple of dear friends there, so wouldn't be alone.  I live a few hours away from Stanford University (in CA), and my primary care doc wants me to go there; he says bc is pretty routine as cancers go and that the treatment protocols are well known and that he doesn't think I need the cancer center, that the treatments will be pretty much the same at either place, or if I am treated here at home. For those of you who have been through this, what would you suggest?  I find it hard to think straight and make a good decision at this point.  I seem to have too much info...and not enough knowledge.