BC Staging Confusion

Nessaness

I am confused because I assumed I would need to know the precise stage of my triple negative IDC in order for the best treatment plan to be put into effect. (Not to mention knowing it for myself so I can Google it over and over again so I can stare at the prognosis!)



With the decision that chemo needs to be started immediately (on this egg-sized and EXTREMELY painful tumor) and surgery put off until chemo is done, I am left without absolute knowledge of my node status. Is my oncologist just going to make an educated guess as to my BC stage by the estimated size of my tumor and what my CT scan shows? Is this what everyone else, that has neoadjuvant therapy, deals with?



I would prefer that we know the full extent of this cancer instead of guessing it by not being able to see possible node involvement on the CT scan. Then, after chemo, being told that if it had been there, it had been killed by the chemo.



Am I nuts to want to know for sure, right now, the full and complete scope of the cancer in my body?

Outfield

Nessanesss, the basic gist of what you are describing is a shared issue of all women who have neoadjuvant chemo (chemo before surgery).  With neoadjuvant chemo, staging is estimated by scans, or by biopsy of lymph nodes (but you can't biopsy them all by needle), and then the tumor is monitored with scans.  I agree, this sequence blurs staging since you don't get more solid info until the surgery, but that's after chemo, so you won't ever know with absolute certainty (truthfully none of us get "absolute certainty" since pathologists do not examine every bit of tissue)  what your stage was when you began treatment.

The situations where staging is really critical are when treatment decisions rest upon the results.  For example, someone with a small tumor could receive a different recommendation about chemo if multiple nodes were found to be positive.  So that person really needs to know the exact staging info.

I hope this helps.  I'm 3 years out from diagnosis next Tuesday, had an ER+ PR- HER2- IDC that was large and aggressive, and I did not reveive neoadjuvant chemo but I probably should have.  It's a pattern of treatment that has only really come into acceptance in these last few years with the publication of studies showing that outcomes were just as good doing things in this order.  I see two advantages to doing neoadjuvant: first, you have less of a chance of running into what happened to me (lost a little bit of pec muscle to get clean margins) and, second, your docs will be able to see if a particular chemo is working or is a waste of time, so they can most effectively tailor your chemo to you.

This staging dilemma is one that I expect will be worked out with time.  

Good luck to you.  I know time waiting to start treatment is awful.

GoWithTheFlow

Nessanness, the plus side to chemo first is you know if it's working by monitoring how much it shrinks.   I was in a lot of pain when I was diagnosed, and the day after my first chemo, i cut down on pain meds substantially.  Within 2 days, I was just taking one at bedtime.

If you did surgery first to figure out what stage you are, and they remove everything, it's a praying game to guess whether the chemo worked or not.

peggy_j

Nessaness, I'm like you: I tend to want to know everything before making a decision. (Sometimes I spend too much time searching for info, and I drive myself crazy. Hope that's not the case for you).

My MO always asks: what will we do differently based on this information? I don't know the usual Tx for your Dx but in my case, a SNB was done to decide whether or not to do chemo. It sounds like the biopsy provided enough info for the MO to recommended chemo prior to surgery. 

I didn't have chemo-prior-to-surgery but know of a few people who have: 1) an aunt with lung cancer had chemo and they could see that the tumor shrank. 2) a friend-of-a-friend with BC had a tumor that did not respond to the first chemo regiment, so they switched drugs. 3) it's not chemo, but a friend with melanoma had Tx and when they did a scan something "lit up" (pardon my ignorance; on the CT scan?). A biopsy confirmed that cancer had spread to the nodes but was killed by the Tx.

So, not sure if that is helpful. In the misery-loves-company department (?) after my SNB my surgeon said my nodes were clear (yay!). Then I said, "so there's no chance it has spread?" BS: "Well, there are no guarantees, but this is the closest we get." So even news like that isn't completely reassuring for me. I want guarantees, in writing please!

Since you mentioned googling over and over and later asked "am I going crazy?" I suspect you and I may be sisters in our obsessive quest for info. That did drive me crazy at times. So, I hope you're able to .... set down the mouse and step away from the keyboard ... and hope you're able to outside today and have some distraction therapy. Also, I hope you're getting enough sleep (maybe take a nice warm bath or ?) Sorry you're going through this. (((hugs)))

msphil

 I had 3 months of chemo before the mast, and 3 months after surgery to make sure they got it all and Praise God, I am a 19 yr Survivor and am glad the docs decided to go that way, we are all in my prayers daily.  msphil(idc,stage2, 3 nodes, L mast, chemo and rads and 5 yr son Tamoxifen)

Denise-G

I write a BC Blog and hear from alot of TN women.  It seems the new norm is to do chemo first.  It's interesting because some have great results on AC and others not.  And vice versa with Taxol.  But one gal had a HUGE tumor and it was virtually gone by the end of chemo.

THE BIGGEST ISSUE is make sure you trust your Oncologist with your life.  If you have ANY DOUBT - ANY - run to a new Oncologist or treatment center.  You know in your gut if you want to give them your life.