Staging Confusion

my doc never said if I was a,b,c. I thought I looked it up on here somewhere. that I was stage llla.

but 13/17 positive lymph nodes IDK

I've always read, and was told by my Onc, that if you have 10+ nodes you are IIIC. I'm sorry to be the bearer of bad news if you find it that way. But its really just a number. You are already surviving and thriving and living life! The a, b or c doesn't really matter. Just keep on doing what you're doing! Live healthy long happy lives! Happy Holidays! 

I really do think in the future the current staging system will be obsolete - there are so many factors that are more indicative of prognosis and treatment, like Her2, etc. rather than just tumor size and nodal involvement.

I think as therapies become more targeted, the "generalised" staging method will be used less and less when deciding on treatment.

Hi Cheryl,

What a nasty shock!!!  The good news is that treatment options are getting better every day, and that all of us can expect a much better outcome than even ten years ago.  The important thing is to do everything recommended.  MD Anderson stats show that 70 years ago, only one in six women with regional breast cancer survived ten years.  Now five in six do. 

I didn't sweat the treatment decision.  One thing about being "high risk" is that you get the message immediately.  I was in a trial comparing 4 ways of delivering a third generation protocol.  I got the standard of care, but more.  If you got TC, you got one of the heavy hitters, so don't sweat that.  The important place to focus is going forward, which will be a trip through hormonals.

I am doing those and just fine.  Two years from treatment, I am back to where I was going in, with my focus being on rebuilding my career.  This will get me where I always wanted to be.

In doing research, I learned there are three factors associated with better survival going forward:

1. Exercise
2. Weight management
3. Aspirin (which is also helpful with preventing heart disease, so one baby daily if you tolerate aspirin well)

Diet appears to be less important than the above, or at least they couldn't separate it out as a factor.  This work is from the Nurse's Health survey, with the bulk of it being conducted by Melinda Irwin (Yale) and Michelle Holmes (Harvard).

Exercise is also important in terms of well-being and of course weight management.  It makes my brain work as well as other parts of my body.  The only downside is that buying clothes is a lot more tempting.

Feel better and enjoy the holidays.  Things do get better......promise.  This is a normal time of grieving and moving forward.  You will get there.

Meanwhile, try to get out and do some walking in the sunshine.  That will lift the gloomiest of moods.  Plus, always funny things to see.

Right now you have two courses of action.  You can sit and worry about what you will ask your oncologist a month hence.  Or, you can get out and enjoy the holidays, including exploring new things.  One of these could be eggnog.......I'll do the eggnog any day! - Claire

Oh good Cheryl.....

TC is "taxotere and cytoxan" and is one of the standard protocols for Stage III.  "High risk" includes anyone with nodes + Grade 3.  I fit that one.

Go for the tatoo unless it covers your entire body!!!  (Tatoo removal is a growing business here in Seattle!)

Congrats on the 7 pounds.  I seem to be able to eat enough to make up for whatever I burn off.  But stable weight is just fine.

Freezing your tail off skiing......or having the time of your life.....will do wonders for taking your mind off the other.  I still have a tinge of frostbite from cycling.  I need to get skiing, but that will have to wait until I get past the creeping crud.  Talk about dragging!!!!

Enjoy your holiday.  I still have puddings to steam.  Also work to do on the article I am writing with two colleagues, but that will have to wait until my brain starts working again.

As for "will it come back?".  I think we have a life choice here.  Mine is to assume I am cured until proven otherwise.  But also to tip those odds in my favor by doing all treatment and the lifestyle choices I outlined above.

I got the feeling I was on the right track when my oncologist said she should be doing some of what I am doing when she took a look at my upper body.  She is 20 years younger than I am.  YAY!!! - Claire

p.s.  My late kitty Rosalind could never figure out what I saw in taking baths.  She would come to the edge of the tub, put her paw in, and walk away shaking her head!!

Cheryl.....time to widen those horizons and go for a walk.  They make warm clothes, including hats which are really important when you have microlocks.

THEN.......the bubble bath is a reward.  The only drawback is that you have this ungodly smug attitude so no one can stand to be around you.

It's grey, nasty, and chilly here and I am planning a walk.  Plus, I felt better during most of chemo and I am still walking.  So get out there lady.

Actually, the December landscape is really beautiful with the low light.  Tree bark is stunning, and you see other wonders that are normally obscured by foliage.  That's my story and I'm sticking to it. - Claire

Hi CKGray,

The "generation" terminology is used to mean similar to what it means with people. 

The first generation is the oldest, second is next oldest (so a little younger), third is even younger, and so on.  It doesn't necessarily mean good/better/best or bad/worse/worst, it has to do with order in which drugs and protocols were developed.  Usually there's a hope that newer is better, but sometimes it's just different.  I'm not speaking specifically about any drugs here, just about the terminology.

That terminology is used throughout medicine, for example it's also used for antibiotics. 

CKGrayoh -- How funny you mention "radial scar".  That's what they said on my PET scan but they were very very very wrong.  I like to think it just didn't light up because it was a lower grade tumor. But with 6+ cm you pretty much have all grades sometimes.....  hang in there

Mokengirl, I think when drs downstage it's just a reference to how well (or how badly) chemo did it's job. It's especially hard with neoadjuvant chemo to get an accurate stage if all they rely on is the post-surgical pathology because in some cases, the response is complete...and then the patient theoretically could be staged as 1 or even 0. But we know that probably wasn't the case.

So I would tend to agree with the radiation doc. You don't really get downstaged. You just get told how well the chemo hit the cancer by the remainder of it in the removed area. And they use the staging reference because that's what people tend to understand.

ckgrayoh, I don't know if I can help with your confusion, but, from my understanding: The stage describes the extent of the cancer in the body. Staging is based on; invasive or non-invasive, size of tumor, number of lymph nodes involved, and if it has or has not spread to distant areas. Staging is an important factor in determining prognosis and treatment plan. This is why staging cannot be accurately determined until all tests have been done; biopsy, CT, PET, MRI... Stage can be based on the results of physical exam, biopsy, and imaging (called the 'clinical stage'). Or on the results of these tests plus the results of surgery (called the 'pathologic stage') Pathologic staging is more accurate than clinical staging.

Then there's the T, N, and M staging:

The letter T followed by nbrs 0-4 would describe the tumor size and spread to chest wall under the breast or skin. The higher the nbr, the larger the tumor or wider spread into tissues around the breast. {T0=No evidence of primary tumor} {T1=T1a,b,or c=Tumor is 2cm or less} {T2=Tumor is more than 2cm but less than 5cm}{T3=Tumor is more than 5cm}{T4=Tumor any size which has grown into the chest wall or skin, and also Inflammatory b/c falls into this category}

 Letter N followed by nbrs 0-3 describe if cancer has spread to lymph nodes near the breast, and how many.

  Letter M followed by nbrs 0-1 describes whether the cancer has spread to distant areas, such as brain, liver, bone, lung..

I don't know if this will help you, but if you are like me, this only confused me more in the beginning. Makes sense now.

I wish you the best! And may God bless you with a long and fulfilling life!

Margie