New to ILC, believe somebody here could help

Hi QAnna!

I am no professiona butI think the size of the lump and whether it has spread or not affects the stage.  For the lymph nodes they can look at them with an ultrasound and other tests to see if they are matted together or enlarged, but I think they have to do some kind of biopsy to know that it is cancer for sure.

A little over a year ago I was at the same point you are and was scared.  Things have calmed down for me since I have done treatment and am used to seeing the doctors.  Right away when I went to the doctor they did a bone scan, ct scan, breast MRI and many other tests.  I am sorry you have to be going through this!  Keep in touch. 

Anna - Yes... you have to wait until after the surgery for all the final info. Dr's vary as to whether they want scans to check for mets. I think, if they think the tumor is large, or if it's NOT er and pr positive, they have a tendancy to do scans, as those dx's can be more aggressive. But don't hesitate to insist on scans if you think it would put your mind at ease. You're entitled to request whatever you want. Best wishes... keep us posted.

QAnna -

I think there's a section on Breastcancer.org that discusses the meaning of "stages," "grades," etc. I also recommend a book like Dr. Susan Love's "The Breast Book." It's extremely detailed, but if you want to know anything and everything about breast cancer and treatments, it's the most comprehensive. My radiation oncologist had a book she gave to new patients that is very basic and explains most things: The Breast Cancer Survival Manual, by John Link, MD. I found it helpful to get a couple of books and have the ability to read and reread and reread - a diagnosis of breast cancer just really inhibits the ability of the brain to understand things, I found! I was unhappy that it wasn't really possible to know much about what was going on inside my breasts via external methods like ultrasound and mammography - I remember being horrified that they had to take part of the lump to see what it was, and that they STILL couldn't be very specific until the whole thing was out.

IDC is perhaps easier to find initially - and at a smaller stage - but I don't know about easier to "cure." Nor do I really like to use the word "cure." I have low-grade ILC, and my oncologist seems to believe that it's more likely to show back up in 10 or 15 years, if at all, and that it's likely to then be manageable as a sort of chronic, long term illness.

I was also told that my ILC was probably growing for about 8 years before I found it.

Once the tumor and sentinel nodes are removed, the pathology will allow your doctor to "label" your cancer as to stage and grade. You can tell some things from the biopsy (possibly even grade), but with ILC, you have to get it out and obtain clean margins to really call the size.

Good luck to you!

Coleen

QAnna:  Please don't have surgery until you understand what's going on.  You need to be able to take the time to digest all of this info and ask your doctor if you can e-mail her/him with questions you have.  My breast surgeon has been wonderful in that she has told me to e-mail her with questions.  You never remember to ask them when in the office or maybe you have more as you learn more about this.  I have ILC after an LCIS diagnosis in Jan. (ILC dx in March).  I have had the sentinal node surgery and now am waiting to do bilateral masectomies.  I had the initial biopsy in Jan. for calcifications where the LCIS dx was made.  I was sent for an MRI where a fibroadnoma was found nearby.  I asked the surgeon to remove the fibroadnoma while there to remove more tissue to rediagnose LCIS and to make sure there was no cancer at the original site where the LCIS dx was made.  The invasive cancer was found in with the fibroadnoma.  It was a blessing in a way for me as I had already made up my mind to do the masectomies anyway.  You will be fine.  You just need information and to make up your mind how you want to handle this.  Follow your heart, but I'd advise no surgery until you know what the purpose is in having it.  You don't want to wait forever, but take the time to make a good long-tern decision that YOU can live with.  Best wishes to you.  Sorry you are involved in this "lotto" but you will have new experiences and meet new friends on this journey--you'll learn a lot about yourself.  (I know--you'd rather do it another way--wouldn't we all!)  Wish we all could have a patient navigator or volunteer assigned to us at diagnosis to help us maneuver through all of these decisions and tests!

Q, you'll get your surgical pathology report that will have the stage and grade of the tumor at your surgical follow-up appointment, which should be about a week or so post-op.

The decision whether to go for a mastectomy right off the bat or to try for a lumpectomy should be made prior to surgery. That's where the MRI will help. If the MRI shows a very large tumor (hard to say what the cutoff for that is, but let's say 5 cm for the sake of argument), neoadjuvant chemo (chemo given prior to surgery to shrink the tumor) would probably be recommended. If the MRI shows a more manageable tumor, say 1.5cm, then lumpectomy would probably be an option if you wanted to go that route. 

Sometimes the masectomy decision is driven by medical necessity and sometimes it's driven by patient preference. I opted for a lumpectomy plus radiation, and was able to do it with a 2.7cm tumor (which is fairly good sized) even though I'm a B cup. If my tumor had been multi-focal (presenting in more than one spot) or if the surgeon couldn't get clean margins without completely disfiguring the breast, then I would have had to have a mast.

Some women can't live without having a mast, and in some cases opt for a bilateral mast, even if there is no cancer in the other breast (again, this is where the MRI is useful, b/c sometimes tumors will be spotted in the contralateral breast that was thought to be cancer free). If the mast decision isn't dictated by medical necessity, then it comes down to personal preference. It's a big decision, but you need to understand that the surgical decision you make has no impact on your overall survival. If the cancer is going to metastisize to your organs, it's going to do it no matter how much breast tissue you remove at diagnosis. In other words, in terms of overall survival, lump+rads=mastectomy. 

If you go the lumpectomy route, you have to decide how you feel about doing radiation, and how you feel about close followup screening for local recurrences or new primary tumors. I go for an annual MRI and annual diagnostic digital mammo, staggered every six months. My latest MRI showed a suspicious spot on the "good" side that had to be biopsed. That was stressful, and you have to decide if you can live with that sort of scenario. The thing with a lumpectomy is, you can always opt for a mast down the road if you find you can't live with the constant monitoring. 

If you have a mast now, then you have to decide if you want reconstruction or not, and there are many options within that scenario. You can have immediate reconstruction or delayed reconstruction. If you want immediate reconstruction, your mast needs to be coordinated with a plastic surgeon who will do the reconstruction. If you opt for reconstruction, you have to be willing to go through quite a bit of surgery, and willing to deal with the reality that you will lose a lot, if not all, sensation in your breasts. 

Regarding your question about whether they will do pathology on your tumor while you're on the operating table--no, but they will diagnose your sentinel node biopsy while you're on the table. They inject a special dye, or in some cases a radioactive tracer, prior to surgey that identifies the axillary sentinel node on your cancer side. Then the surgeon finds that node during surgery, removes it with a few other adjacent nodes (I had four taken out) and sends the nodes off to the pathologist. If these nodes are free of cancer, the surgeon will assume the other nodes in the patient are also free of cancer, and not remove any more. If the sentinel node is positive, then the surgeon will do an axillary dissection, where s/he will remove many more nodes (it varies--I've seen anywhere from 10 to 30), and those nodes will be examined by the pathologist at a later time in order to determine your staging. The more nodes that are removed, the more chances for lymphedema complications in that arm down the road, which is why the standard of care is a SNB first. 

RE: should you meet with the onc prior to surgery. Not necessarily. Some women meet with the onc first, some meet with the onc after surgery. I met with my onc prior to surgery, but that was just how my cancer center did things.

RE: should you have the MRI prior to surgery--ABOSOLUTELY. And if the surgeon isn't willing to do one, then get yourself a new surgeon. You need to have one who has covered all the bases prior to surgery and who communicates what s/he is doing with you and what your options are.

Hi QAnna

Pre surgery I had a core biopsy and a breast MRI. My BS with those results classified me as a Stage 2B plus or minus one (With surgery, I would be classified as a 2B or go up one to 2A or down one to 3A). Since I was node negative I turned out to be a 2A.