No lymph node involvement but metastases

mommichelle

Just wanted to put it out there...I was diagnosed stage 1a with no lymph involvement and what appeared to be no vascular involvement.  I never was given other tests to fully stage me because I was told with no lymph node, no other symptoms, the chances were slim that it was anywhere else.  I have read about a few people with no node involvement but metastases.  Is it common?  If it is common is it due to vascular involement?  Are the tumors usually larger in size?  Mine was 4mm and I am freaked out a little to think something else may be going on................

Alyad

I don't have the answers to a lot of your questions- but I do know that 4mm is a very small tumor fwiw. Could you get mets? yes, but your chances are very small.

SpunkyGirl

Mommichelle,

Your chances of this cancer coming back are very small.  I think one of the keys to getting through and beyond cancer are to not let it rule your life any more than it has to.  This support board has thousands of women from many countries on it, so you are bound to find some who've had mets who started out like you, but in real life that's a very small minority.

All I can tell you about the cancer experience for me is that I realized that the fear can paralyze, and that I just didn't want to live my life that way regardless of what the future holds.  I know it's hard, but just try to focus on what you can do to get through treatments and move on.  We are a great source of support here, but you can also read about some scary stuff-don't do that!

Many Hugs

Bobbie

Laurie08

mommichelle- I am grateful that you asked this question.  Thank you so much for having the courage to put it out there, I often times wonder things the way you do.  We do need to move on as Spunky said, but there are moments in the middle of the night where you wonder.  I hope you get some feedback.

davisfamily70

I think that we all wonder-but I also wonder if my kids will be safe everytime they get into a car.  A couple of years ago there was a major plane crash in my area it was ironic that a lot of the people on that doomed plane lived just a few miles from where the plane crashed. They found that the pilots were inexperienced and overworked. The people on the plane did not know the risk they were taking when they boarded, they did not know that their lives were going to end in a matter of minutes. We are in the unique position that we know-we know that this disease can get the best of us-it tried once and we came out fighting-we found out where it was hiding and we destroyed it and if it comes back we will destroy it again, or at least force it to retreat-

but we are watching for it now. It will no longer be a surprise.  Hope for the best and prepare for the worst-but don't let it consume you- easy to say, not so easy to do

chrissyb

Hi Mommichelle, I, like you had no node involvement and I have mets to my bones.  Where you and I differ, is in the size of the tumor.  You say yours was 4mm and obviously caught very early, where as I had three tumors in the same breast the largest was 4cm the next was 2cm and the third was 1cm.  Most of my breast was not breast but tumor. Obviously they had been there for quite sometime.  It would have been foolish of me to think that a cancer cell had not passed through the lymph and into my system.  Because yours was so small, it is possible that you may get mets the same as it's possible for any of us to get mets but the probability for you is very slim.    Have your regular checks and please put your mind as ease. Live your life with the utmost joy .

Love n hugs. chrissyb

mmm5

MomMichelle

Good question, it is one that floats through my head often. I even saw a counselor and wanted more reassurance than what I had. The truth is that the chances are small if you had Hercpetin less than 10 percent that it will come back. But I just finally had to wrap my head and heart around the earlier post that it is a possibility. I know of many women stage 3, many nodes that have been fine for years my Step mom and aunt are 25 and 15 year survivors, of stage 3....and I know 2 women that had no nodes that recurred. (one was later found to be stage 4 at dx but she still had no nodes) yes LVI but no nodes. I have finally just looked at it as this there are so many great treatments out there that prevent recurrence even for ladies with many many nodes that he stats  are good. If the cancer comes back with my stats and a year of chemo....it most probably was meant to come back...... because I did all I could do. I don't prepare for the worst...I worry about it as I have 3 small children I just prayerfully and optimistically accept life as it comes. (most days    )

mommichelle

I thank everyone for your replies and words of encouragement.  I am not completely obsessed with the idea of a reoccurance, but there are times when it gets to me.  I did have a bone scan on Friday and I am anxious to get the results.  I have had shoulder pain on and off for a couple years and it has been bad for the past few weeks.  I figured when I was having the most issues, I was training for a half marathon and I then thought it was the beginning of arthritis.  Now, I am just freaked out that maybe it was something more.  I never really thought cancers pains would come and go though.  Who knows?

SleeplessIn

Thank you for posting this. I, too, am extremely scared of possible metastatis that has not been found.



I only had a sentinal node biopsy, and that showed no involvement and the lump removec had clear margins. Based on tha I had no other tests done, no brain, liver, abdominal, other CT, nor did I have a bone scan or a MUGA scan (for the heart). - My oncologist told me, after repeatedly asking him, that no further tests were necessary in my situation, and that all additional test would only needlessly expose me to radiation. Still, I cannot stop thinking about the worst, and what if it could be treated now, IF I had any mets, rather than years down the road.

CoolBreeze

I had no nodes or vascular invasion either and have mets to the liver.  My tumor though, was 3 cms of invasive and another cm or two (can't remember now) of DCIS.  I also had multifocal spots (several different, unconnected tumors in the same breast) and they were multicentric (spread through different quadrents).  

I was dx'd stage IIa at first, and went through all my treatment - mastectomy, 6 rounds of chemo and a year of herceptin. There were no other staging tests done,  guidelines show they don't save lives. PETs have a lot of false positives (in fact, I just faced one) and they don't show anything until you would likely be symptomatic anyway.  

Four months after I was done with treatment, mets were found.  I had pain that my doctor was diligent in investigating.

I think with such a very tiny tumor you have very little to worry about but I know saying that isn't going to make you stop worrying.  

I want you to know that mets make themselves known, so what you need to do is know what is normal for you and your body, and when something out of the ordinary goes on for a certain period of time (a week or so) than call your oncologist.  

It is very unlikely that you would find mets so late that you can't be treated at all.  Early with mets isn't the same as finding it early originally.

I know this is hard, but my advice to you, as a Stage IV woman, is to do your very best to think like a healthy person, try to put cancer behind you, and trust that when something happens, you will know about it.  Every minute you spend worrying is a waste because you can't change what is happening and while you are worrying, you are not enjoying your life.  Moving on with your life post-cancer is a very difficult thing to do but it is a process that needs to be taken on deliberately and with a plan.  You might live 60 more years - you don't want them to be worry-filled.

Good luck to you ladies and I hope and have confidence that we will never see you on the Stage IV board. 

Kadia

Coolbreeze, thank you for your post. I mull over the same question as the OP, and your words were informative and thoughtful.

JillThut

A different take....

i had no node involvement..originally a stage IIB. Unlike most people I had no fear and never even considered it to be that serious...maybe because my mom had breast cancer at the same age i just considered it inevitable. Because of the no node involvement and the declaration by my surgeon after the lumpectomy that it was not in the margins, i opted to do radiation only...no chemo. I was told scans were not necessary so had none. I was also told about the false positives of pet scans that alarm people unnecessarily...and that if I had mets I would have some symptoms....not true! I was seen by three oncology specialists every three months for two years...no one looked anywhere but the breasts. Two years after original dx i got flu like symptoms (anemia) and pain under my right rib cage. Went to my gp who sent me for an ultrasound of the liver which discovered multiple
abnormal lesions. There is something wrong if three cancer specialists..onc..radiation onc...and surgeon were following me for three years and it took the GP to discover mets. Per the onc the
mets had to have been there all along. He let a full sixteen months go by without even a tumor
marker test. Not to alarm you...not my point...I try to make cancer as small a part of my life as possible..not easy as all stage IV women know what with constant chemo and periodic scans...but
don't be lulled into believing that if you had mets they would somehow show up in a symptom...mine didn't...not until I had extensive involvement in liver and bones.

bone, liver
and brain mets Jill
Diagnosis: 10/6/2009, Stage IV, mets

Fytnlykeagirl

chrissyb, did you have a bone scan soon after your breast cancer diagnosis to determine that it went to the bone?

Curlylocks

This is an interesting discussion and one that I wanted to add my thoughts on.

Breast cancer is a huge crap shoot, I had a 4cm tumour, 3 positive nodes, grade 3 tumour. I was diagnosed at stage IIb (age 41) and am a 6.5 year survivor.

My youngest sister  was diagnosed in July 2010 at age 42, stage 11a, had negative nodes, a 7cm tumour but lymphatic invasion. She was rediagnosed with Stage 4 spread to her bones 2 weeks ago.  It is a HUGE blow for all of us....

My thoughts are that one should live their lives like there is no tomorrow because you just dont know!

Michele

Florence2006

I also had no lymph node involvement based on sentinel node.  Originally had a less than 1 cm breast lumpectomy and mammosite radiation.  The lump returned in 6 months.  Had a second lumptectomy.  Returned again in 6 months.  Had a left breast mastectomy.  3 years after the first lumpectomy, I had breathing problems, only to discover that it had traveled to my right lung 5 years ago, before even the first lumpectomy.  It had even permeated the chest wall and vertebrae.  6 months ago, I learned I had liver metastases.  I am back on chemotherapy for the third time.  The liver mets have reduced by 75%.  Never had any symptoms.  It was discovered during a routine CT scan.   I started this journey in 2006.  It is now 2014.  I am still working at at age 70 and forging ahead with life as hard as I can.  My tumor marker is donw to 19!!  I am on a break from chemo.  When the tumor marker goes back into the 30's, I'll return.  My tumor marker has been as high as 400 when they discovered the lung. Keep up the fight!  I sometimes hate it when people call it a fight, but, you know, it's true.  Hope some of you are still out there too!