Newly Diagnosed Uncertain about my Treatment

Michigan

we have the exact same dx-- I had a 2.5 lobular, no nodes, clear margins, lumpectomy, chemo, radiation and hormonals.

Whether he/she should have done an MRI before doesnt' matter so much now, but I know my surgeon was not doing surgery without a full MRI of both of my breasts.  Get the MRI now--- because an area of concern on the other breast is something you will want to deal with now, not later.  

I agree with gin, get to a major cancer center--- are you in Ann Arbor?  UMich has a good one I think.  If you don't like the surgeon, find another one--- make sure to get copies of every single record.  

It is not uncommon for the lumps to be larger at pathology than at the MRI--they estimated mine at 1.2 and it was 2.5---- the oncotype test will be so very worth it for you as well.  It can really help you make a treatment decision.  Generally, they recommend radiation and hormonal drugs after a lumpectomy--- and you can of course decline any and all treatment.  The unknown is chemo--will it help?  will it hurt?  the oncotype test gives you some good data about your type of tumor and your data..

Lobulars tend to grow slowly--- I wouldn't get to far ahead here, but I would say get another opinion..... you want the clear margins so you can take the next step.  

Finally, I want you to know that I am about 18 months out of diagnosis and over a year out of treatment and I am just fine.... and I was pretty fine through most of the treatment.  Please feel free to PM me if you have more questions or need any help.   

Hi Michigan,

It sounds like you are developing your plan of action.  My only suggestion is that if you haven't already you really need to setup an appointment with a medical oncologist to discuss the oncotype testing, chemo, radiation and medical treatment plan in general.  Those are all the areas of expertise for an oncologist not a surgeon.  After my first BC dx I met with the medical oncologist following my initial excisional bx so we could review the tumor pathologies and determine treatment strategy re: chemo, rads and hormonals. 

Knowing the type of BC and pathology you have is important in deciding the need for further more aggressive surgery vs breast conservation.  While a surgeon can usually tell you what he recommends surgically, the medical oncologist can use her experience in treating specific BC types to determine the best possible approach both surgically and medically for you. I found it very helpful to meet with the oncologist before my final surgical process.

Since you do not live near a cancer center you may want to get references for a good oncologist in an area that you would be willing to travel to for frequent visits or chemo if that ever becomes a future necessity.  Lobular cancer is difficult to detect.  You are actually lucky it was found as small as it is since often Lobular tumors are not found until much later.  The "wait and see"  suggested for the other breast area should also be something you discuss with an oncologist to see if that is a reasonable approach. 

My personal experience was that I had a Lobular BC growing in the opposite breast the whole time I was being treated for a Invasive Ductal BC.  Over 5 years of 3 month checkups and annual mammograms yet the lobular was never detected until it was large enough to be felt on exam. Breast MRI is definitely the better choice for women with dense breast or already known history of Lobular cancer.  If an experienced medical oncologist feels comfortable with the "wait and see"  approach I would just make sure the plan is to get MRIs for monitoring the breasts on a regular schedule.

If it helps, I am now 10 years out from my Invasive Ductal BC dx and will be 5 years out this Nov from a very nasty locally advanced Lobular BC diagnosis. I am still NED and doing great!  Finding the right medical professionals is one of the most important tasks you will be faced with during this whole journey.

Wishing you the best.