Stage 1 and Mets

The chances are very much reduced but bc isn't a very predictable critter - there may never be a recurrence so worrying isn't a way to live life.  Just be vigilant and listen to your body - get anything that seems odd checked out - mets can be detected earlier now and can be very treatable. 

Don't live your life worrying...but mets can happen - statistically, your chances of a recurrence are extremely small. 

Hoping you never have to join our Club Mets...Hugs....LowRider

The chances of a recurrence are low .. but we're only human and we worry the cancer will come back, no matter how low the chance of it is.

hugs,

Bren

And those of us who are hormone positive have to start worrying AFTER the five year mark. We have a slower growing cancer and are often undertreated (I was). So they are finding an inordinate amount of stage I and II recurring after the 5 year mark as they only tested to that point. Doi!

Part of the 5-year issue is that the AIs and Tamox are typically taken for 5 years which suppresses tumor growth/recurrence. Once these drugs are removed, there is a spike, statistically, in recurrence rates.

Medigal I had a double mastectomy 2 years ago today. That's it. No chemo. No rads. Not AI's. Nothing. I wasn't even assigned an oncologist. Demanded to see one last year to get peace of mind. She even said I kind of slipped between the cracks! 

That's what I mean by undertreated. Wouldn't you say so?

I had NEVER not been called back for more mammogram pictures, ultrasounds, 3 biopsies and 2 surgeries before my 2nd lumpectomy! When that came back as cancer and not clear margins I said take them off!

With a lumpectomy without clear margins I would have had to have either more surgery or rads. The tumour was at 6 o'clock on my chest wall so rads right over my heart when I already have a heart condition wouldn't have been wise.

Doesn't matter what your stage is. You can jump to stage IV with only one test. I had Papillary Carcinoma, a very rare cancer, less than 2% of all breast cancers. Gets treated as IDC, and I was ER+/PR+ HER2-. So no Herceptin for me.

Mari65 If you want a really comprehensive answer your oncologist can probably give you one.  The important thing is to make sure you really want to know and how you will deal with the information.  Everybody approaches their diagnosis in their own way and that is how it should be.  Do what is best for you. 

I know a lot of people don't like statistics but I do.  I know new things are coming up all the time but I take the best that medical science has to offer at the time, both with treatment and risk assessment. 

My tumour was 18mm, grade 3, 0/2 nodes, ER+PR- Her2-.  I was 36 and therefore premenopausal.  I had a mastcetomy, due to a large amount of high grade DCIS as well as the 18mm tumour. No rads, 4 rounds of EC and five years of Tamoxifen.

After my chemotreatment my oncologist said my risk of recurrence was 20%.  That's 1 in 5, at 36 to me that was not a small risk, but better than many others, but not great especially when you have two four years olds.  At five years out, interstate move, new oncologist.  Told 5 years out my risk of mets was 6 or 7%.  Much better.  In ER+ tumours the risk drops, as has mine, but then it just cruises along unchanged.  I asked for how long. I was told, up to 25 years.

This is my reality.  It could be a lot worse and I am grateful that it's not worse and I deal with it.  Hey I am saving for retirment!  However I don't think that risk is small and certainly not extremely small. 

Due to family history I also have a 20% lifetime risk of ovarian cancer.  BRCA1 and BRCA2 inconclusive (we don't get negative results in Australia).  My risk was assessed by my geneticist.

I am six years out.  Happy, grateful and mostly unworried.  However my life will never be the same since that day a few months after my 36th birthday.

Everybody circumstances are different based on their cancer (sorry I hate that terminology) and its characteristics.  So if you really want to know, ask your onc.  I did and when she told me the risk would be there for 25 years I said "Gee thanks".  And she said "Well you asked"  and I thought "Well yes I did and I wanted to know so I am just going to have to deal with it."

 Do what is right for you. 

Take care,

Sandy

I had two stage I, grade II tumors (1.4cm right breast 2002, 1.7cm left breast 2006), then bone mets in 2007.  I never had a positive node or anything.  It doesn't make any sense at all, but like everyone else has said, BC is so unpredictable.  Oh, and I did everything-lumpectomy first, bilateral MX in 2006, chemo, radiation, etc...

Peace and hugs to you.

I'm quite positive about my future, but there's definitely a lot to worry about.  With no chemo, AI or Tamox, my chances of being disease free in 10 - 15 are just 67%.  I did chemo, am on Tamox.  That still only gives me 80% and change.  I was a 1.2 cm grade 3 IDC ER+ node negative patient with a 12 Oncotype score.

As my mother says, someone has to be in the 20%.  The truth is, I think we will move forward as one community when we realize we are all in the same boat to some extent. ER+ tumors can come back anytime.  Cancer is sadly totally unforgiving. I'm not being negative, I'm thrilled to be alive and move forward.  But I'm sober.

And my latest battle cry:  second primaries. Which I have a wholloping 1% per year cumulatively.

Regarding over or under-treatment, I went aggressive due to my age, however, there is no solid evidence that chemotherapy promotes overall survival in a patient not manifesting mets. Treatments need to evolve to be more targeted, less slash-and-burn, with a whole lot more attention to the long term side effects.  Particularly in younger women.

I've also wondered about mast vs. lumpectomy.  I had a lumpectomy.  For me, the potential damage to my working arm was too risky with a mastectomy.  I have heard a lot of mastectomies that resulted in picking up pre-cancerous or other tumors in the breast, and it alarms me.  I also know they say only 30% of pre-cancerous cells ever become full-blown cancer.

I will add finally that your Oncotype score points more to your survival statistics than grade and stage at this point.

Was reading the comments about being undertreated and was wondering about my personal situation.  I'm 51 and was diagnosed with mucinous carcinoma(rare), stage 1, grade 1...tumor was .7 cm. ER/PR positive and HER negative.   I had a double mastectomy in July-2010...but received no suggestions for follow up treatment.  Saw an onc who said he would not recommend chemo at this time and seemed disinterested when I tried to discuss hormone therapy.  Acted like he just wanted me to go away.  At my appointment with him he yawned 'literally' over 30 times and I felt that because of my initial path reports that he blew off my concerns regarding my future and the possibility of a breast cancer reoccurance.  I have a strong family history of bc.  Grandmother, aunts, and my mother who lived only 6 mos. after diagnosis.    Since apparently I had to have breast cancer, I am extremely grateful for my path results but as everyone knows, cancer is a tricky animal and doesn't always follow the rules.  I would rather fight a battle with an enemy when it is small in number than to wait and have to fight a war with it when it has multiplied.  I don't know...maybe my logic is flawed or the bc diagnosis I have expected/dreaded since my mother's death has turned my use to be nerves of steel into mush...but I can't help but feel that I should be doing 'something'.  Thanks for listening....

Dee

Nannadee-  I edited this!!!  This is the 2010 NCCN guidelines link!  I posted the 2011 a little further down!!!

http://www.nccn.com/images/patient-guidelines/pdf/breast.pdf

Look at page 20 of the new 2011 NCCN Guidelines.  It specifically talks about mucinous breast cancer treatment.  Hope it helps.

Also, I would get a second opinion.  And if you're still not happy, get a third opinion.

You can also do a "search" here at bc.org.  When searching, put in the word "mucinous" or "colloid."  There's a bunch of us, including me, who have mucinous breast cancer.

Voraciousreader, can you just cut and paste the wording? My computer sometimes doesn't link properly and I'd like to see what it says.

Barbe1958

I tried to cut and paste it -- but it didn't work!  I always try that first because you never know if a link is ever going to work.  Oy -- the internet!