Did Anyone Start Out As Stage 1?

Miller1353

Good morning all,

It is with much respect and admiration that I read the posts on the Stage IV board. I am a scared silly BC survivor who is simply struck with fear that my BC will progress. I was stage 1, but I did not have scans, so I have the persistent worry that I was not truly stage one. My IDC was in the lower-inner quadrant (close to the inner mammary glands), incredibly aggressive (Ki-67 was 76%) and er-/pr+. To top all that, I am BRCA1+, which was stunning news as I had no family history. I feel guilty taking up this board's space, and I've debated for months whether to ask this question. So, with a deep breath, I ask...did anyone start out as stage 1 and is now stage 4?  Thank you for your time.

cookie97

Wish I could help, but I was stage IV from the get go. I totally understand your fears, cancer is still cancer! Hopefully someone will come along with an answer for you that could be more assuring.

Don't feel badly about posting on this site; as far as I know there are no Cancer snobs here.

Peace and Love,

Edie

sincitydealer

Hi demiller, I don't want to scare you, but yes it can come back stage lV.  My Mom was dx stage 1 over 8-years-ago.  She had a small lump about the size of a pea.  They did a lumpectomy with radiation then put her on Tamoxifen for 5 years.  Seven years later she was dx stage lV.  The odds are against it recurring with stage 1, but it can happen.  It certainly doesn't mean it will happen to you.  My Aunt had BC 35-years-ago and it never returned.  She's still going strong.  My Grandmother also had it, and it never came back on her.  Just please stay on top of things as much as you can.

Peggy

Miller1353

Thank you both for your replies. My oncologist said she has never had anyone in her practice go from stage 1 to stage 4, but I figured there have to be women out there who were misstaged at diagnosis or just had very crummy luck. My prayers and thoughts are for all of us. I really hate cancer...

sweetbean

Hi there,

It is rare, but it does happen.  I know of one or two that started Stage 1 and went directly to Stage 4.  Why don't they do scans to be sure?  This is surprising to me.  I'm not one to push tests, but you might feel infinitely better if you have scans and they come back all clear.   

kira1234

sweetbean, Many insurances will not cover scns for us. I know my BS wanted them done, but my insurance said no. The best he has gotten is having an ulrtisound done yearly for the first 2 years. I did have an MRI done before surgery after the tumor was found through mammagram and ultrasound but that was all.

sincitydealer

Yes, I'd be very surprised if it came back on you.  It's unusual for it to show up again after a stage 1 dx.  Try to put it out of your mind and live your life.  Maybe ask for scans to put your mind at ease if it's really bothering you.  I know it must feel like "The sword of damocles" is hanging over your head, but the odds really are low of it recurring. 

Peggy

cancersuks

In '97 I was diagnosed as Stage 2, with 1 lymph node involvement, had masectomy/reconstruction followed by chemo (CMF) and radiation.  I thought I was done, the cancer came back to my spine in November '09.  I'm now taking Femara and monthly Zometa infusions and am doing fine...  Yes, the biggest blow was the return of the cancer after 12 years; the odds are less than 1%. Lucky me...

edwards750

demiller...we all certainly share your fears. I was a Stage 1 when I was first dx and then automatically became a Stage II when a micromet was found in my SN. I had a lumpectomy and will find out today if I am going to have the 5 day 2x a day radiation or the 31 treatment plan..yuk! Typically the 5 day plan is not for people like me with more than one cancer; however, my tumors are small so my BS thinks there is a chance the rad onc will go for it. Hope so. I had the oncotype test done and my score came back 11 which is low. It was also discovered that my cancer is non-aggressive so my chance of recurrence is supposed to be less than 8%. We all know there are no guarantees and I have seen someone on this board have a 8 oncotype score and hers came back. We will all be looking over our shoulder because unfortunately that is the nature of the beast. We try to live each to the fullest and continue to stay on top of our medical situation...mammograms, etc. Research has come a long way since my mother was dx in 1987. She died several years ago but NOT from breast cancer. So I guess I am saying stay optimistic and be grateful your cancer is Stage 1. diane

Fighter_34

I admire your honesty. This is a very scary situation to be in no matter what stage you are in. I now live in fear and my life wasn't like this before. I don't know the answer to your question, but I am stage one and I so scared, but I am brave.

Blessings to us all.

Anonymous

This discussion probably doesn't belong on the Stage IV forum. 

There is a  Not Diagnosed with a Recurrence or Metastases but Concerned forum that might be a better place for this, and our newly expanded moderator team may be able to move the whole thread there.  I will post my answer here in hopes that the thread is moved.

Everything about breast cancer is frightening. 

Staging is not some magical anointing, it is the doctors' best guess given the information they have access to of how far the cancer has spread at the time of diagnosis.  It is imperfect.

We know that some women who were originally diagnosed as everything from stage I to stage III eventually get a stage IV diagnosis, and most of them were probably stage IV from the start, but the tests were unable to demonstrate that at the time.  There are also many women whose cancer is initially missed or overlooked in a screening situation.  The same kind of factors may be in play for both of those scenarios.  Our screening tests are imperfect, as are the human beings interpreting the results.

Some women who initially present with a stage I diagnosis are treated, and go on about their lives, but then at some point after that develop another new primary cancer that spreads before it is diagnosed, and that new primary can be the source of a stage IV diagnosis later on.

There is also the possibility that scares us the most, which is cancer that presents at an early stage, and is treated, but the treatment fails to totally eradicate the cancer which then spreads and eventually becomes stage IV.  That seems to be an exceedingly rare scenario in the treatment of stage I disease to the point of being almost non-existent.  That is the point where trusting the knowledge and skill of our surgeons and other doctors comes in. 

It has been 3 years since my diagnosis.  My health is better than it was before diagnosis.  In the meantime, several friends and family members have died within a matter of days after becoming ill with various other ailments.  Another came very close to dying of the flu.  There are women here who have been living with a stage IV diagnosis for more than those years.  Life gives us no guarantees, so just go and live your life to the fullest.  The worry about recurrence and undetected spread does get much less consuming with time.

sincitydealer

I think demiller posted this question on the stage lV forum because she thought she'd have a better chance of getting an answer here.  I don't know how many stage lV women visit the "Not Diagnosed" forum.  I'm sure there are some, but the majority of them are here.  Maybe it should be moved, but if I were looking for an answer like this, I'd probably go to the place where I think people have had the experience.

Peggy

petjunkie

I had DCIS with a single microinvasion. Two years later, with no symptoms, my cancer had come back and spread to liver and bones. I can't even imagine how small the chances are of that happening. The important thing is no matter what your original stage, be vigilant about your follow-up appointments, mammograms, etc. And then go live your life and enjoy it!

Lowrider54

demiller...I don't think that there are many among us on all the boards that don't have a fear of it returning or progressing.  Is it a realistic fear?  Yes but not one that should consume your life.  I was a stage II/stage III inbetween - I had 4 full nodes involved - a stage II but it ever so slightly had begun to move into node 5 but so slight that I was not classified a stage III.  I did the chemo - CMF, declined the rads and took the Tamoxifin until it was recommended that I stop when the study came out linking to ovarian and possibly cervical cancer - I had a pre-existing condition at 22 that was resolved but it wasn't worth the risk.  I had 10 1/2 years of NED.  Now I have bone only mets. 

Just mind your body - do the checkups.  I didn't have any symtoms but it was found through a series of tests at the 10 year mark full checkup.

Enjoy your life...live it and don't let the fear take over - put in the trunk and lock it away!

Hugs....LowRider

Lauriesh

I disagree with patmom's statement that MOST  stage 4 patients were probably stage 4 right away, but that tests just didn't show it.  I think this statement helps early stage patients feel a little safer, but i don't think it is true. I was over five years out, and had many scans in that time, before I was diagnosed stage 4. There are many other stage 4 women who were originally diagnosed early stage, and many years later were diagnosed stage 4.  

 I was told, at my 5 year check up, that my chance of recurrence was less than 1%. 4 months later, I had a 11 cm tumor on my liver.  

Breast cancer is a horrible disease that follows no rules.

Laurie

I 

Honeybear

I started out with a stage I diagosis to the right breast at age 27 (Dec 2002).

I had another stage I diagnosis, but to the left breast, at age 31 (May 2006).  I read at the time that even in different breasts, some will call this a recurrence, although I didn't have any positive lymph nodes from the first dissection to indicate spread.  My doctors and surgeons at MD Anderson wrote about that differently too (a recurrence versus a new primary in the other breast).

I had about a year of terrible back pain to find out that I had extensive bone mets to spine, ribs, pelvis, etc at age 32 (Aug 2007).

I do have an extensive family history, although never had the BRCA genetic testing because I had clinical factors that put me into having something called "Cowden's Syndrome."  I am ER+/PR+/Her2Neu- and I've done reasonably well on aromatase inhibitors (AIs) and radiation when needed and have just started my first chemo during stage IV life (the oral chemo, Xeloda).

I'm sorry you haven't been able to get the screening you need and/or want.  But, even though I was in college during all diagnoses, I got all screening a yelled about, but still ended up with a crazy result!  I would say, listen to your body (duh) and live each day to the fullest...that's all any of us have anyway. :-)

Good luck to you!

Helmie

Dear demiller, since you are BRCA1+ you should demand at least 1 PET/CT scan a year. My recurrences where all found with PET scans. Originally I started out stage 2, because of the size of the 2 tumors I had in my left breast. Nodes were neg. I had a mastectomy, AC chemo, and Tamoxifin for 2 years. 8 1/2 years after my first dx the cancer was back in my chestwall (no mammogram would show that), and 3 years after that it had moved to my lungs, and now has moved to my spine/bones. So, you never know. Make sure you get annual PET scans, that's all I can say. Hugs, Helmie

spendygirl

Thank you so much for asking the question.  And thank you ladies for taking the time to respond. 

Sassa

Demillerd,

I am answering you here because I had a very similar presentation at diagnosis. My IDC was very aggressive (ER/PR-, HER2+, KI-67 70%).

I am four years out from chemo (AC) and 3 years from herceptin.  I am NED and doing well.

GrandHillMom

Re:  Patsmom's post, my second opinion onc. at Memorial Sloan Kettering told me I was probably Stage IV from the initial diagnosis, even though I was diagnosed as Stage IIIb, but that I was NED while taking tamoxifen for 3 1/2 years until it quit working, like hormonals generally do when treating Stage IV.  This makes sense to me because I had a double mastectomy and my lymph nodes removed, plus chemo and radiation.  The breast cancer must have been in a distant place (my bones) before the mastectomy.  This really doesn't matter except it makes me feel better that I did everything possible to prevent becoming Stage IV, but it was already too late.  Also, that would make me a 5 year Stage IV survivor already, and I am still doing very well.

 Also, I don't have any problem with this thread on the Stage IV/Metastatic board.  I don't know how many of us read the concerned/not diagnosed board, but I certainly don't, so demiller4 may not have gotten much response there. 

sunny210

Most of the people I know with Stage 4 started as Stage 1 or 2. I did. There's a lady in my support group who was Stage 0 and another who was Stage 1 and it came back 20 years later. 

I do have a problem with these questions being posted on this forum. It just strikes me as rude. And that's about the mildest thing I can say.

Sandy 

ejnova

i was stage I ten years ago and a year and half ago was diagnosed with stage IV, i had mastectomy, chemo and radiation. so yes, it is possible. just keep getting your checkups at least every six months.

donnabee

I presume I started at stage 1.

Well, actually come to think of it, I'm sure I was stage Nuthin' once upon a time.  However I was dxd at stage IV.  The real question is can they cure this s*** if they catch it early enough. My mom was stage 1 and was "cured", since it never did recurr during her life time (30 years). But thats ancient history now.

It occurs to me that knowing my temperment, since I wasn't dxd at stage 1,  I am glad that I was stage IV from the get go, (rather than stage IIb, etc) because recurrence would often be on my mind. But that's easy to say now because obviously I didn't have a choice.

And while I'm ranting here, when I read this topic header, I knew exactly what it was going to be--a Stage I sister trying to get some data to put her mind at ease. If I were not in the mood, e.g., worried about current health issues, etc, I wouldn't have clicked on it. So, it was fine with me.

Of course others' mileage may vary. Alternate opinions welcome

cheers, d

angelinac

Hi, My doctor didn't mention anything about a PET scan. I am getting a MRI in the next couple of weeks and also just got a pelvic untrasound. I recently tested positive for BRCA1. My Mom, her Mom and my Mom's Aunt all had breast cancer prior to menopause. My Mom was the only one who beat it.