lymph nodes

Hi Sable,

You are right. Getting BC is such an education-especially in the first few weeks when you have to make vitally important decisions. While you are having tests and waiting for results, everything is unknown and very scary. I remember my imagination ran wild with worry, but then I felt better once we had the official staging and a plan. 

There are no guarantees and we may never be told we are officially "cured" but being node negative is a very good prognostic indicator. For those of us with TNBC, the chance of recurrence drops considerably after 3 years- not so for those with hormone positive BC. Also, our prognosis is particularly good if we have a pathological complete response to chemo, which is not unusual for us 3N girls.

FYI, ladies who have chemo before surgery can have their nodes checked first. I had a sentinel node biopsy at the same time my port was implanted. No matter the order you receive your treatment, chemo is known to be a very effective weapon against triple negative BC. 

I will be thinking of you tomorrow.  

Cheranthia 

Right, FLALADY!!

I think each cancer is different and has its own personality, if you will.  Some cancers grow quickly but do not necessarily spread.  Some don't grow fast, but do move around and metasticize.  So I'm with you, I think the doctors are guessing sometimes, too.

Shannon

In the spirit of sharing whatever good news there is in relation to TNBC, I want to reiterate my understanding of our short and long term prospects. It's especially important for newly diagnosed people to hear whatever positive information is available. While being TN is not at all a good scene, there IS an upside that should not be negated. While we are more likely to have a recurrence in the first 3 years, after that our chances for a recurrence do drop off drastically. This is NOT true for people with hormone positive BC, who remain at high risk. As my onc put it, we're better off in the long run.

But don't take my (or even his) word for it. Check out the article entitled "Triple-Negative Breast Cancer: Clinical Features and Patterns of Recurrence" which states, "Compared with other women withbreast cancer, those with triple-negative breast cancer hadan increased likelihood of distant recurrence and deathwithin 5 years of diagnosis but not thereafter. The patternof recurrence was also qualitatively different; among the triple-negativegroup, the risk of distant recurrence peaked at 3 years anddeclined rapidly thereafter. Among the "other" group, the recurrencerisk seemed to be constant over the period of follow-up."

Here is a link to the full article: 

http://clincancerres.aacrjournals.org/cgi/content/abstract/13/15/4429

Also, listen to the June 4th teleconference on TNBC. Here is a link:

http://www.cancercare.org/get_help/tew_details.php?tew=breast_060408&ret=%2Fget_help%2Fhelp_by_diagnosis%2Fdiagnosis.php&origin=sendpage</font> 

Of course, even TNBC is not just one disease. It is a catch-all category based on three things we are NOT. What we ARE is unknown and important differences between us are surfacing. Many of us repond to chemo, but some do not. Some of us have BRCA mutations, some of us do not. Some of us do have recurrences after the 3-year mark and statistics are meaningless if you're the exception. Since what drives TNBC is still a mystery, doctors can only apply their best judgment based on what they DO know. I suppose that's guessing, but it's the best we've got.
Anyway, I think it's important to maintain a balanced perspective on this beast. 

Yes, that's right. We do share the same odds with our hormone receptive positive sisters for a few years. My point was that our odds of having a recurrence decline over time, while the threat remains more constant for them. May we all reach virtual zero!

Best to you,

Cheranthia 

lemonld,

Hate to say this, but I hope I don't have to Welcome you to my world.  I see my history on my signature line.  This is how I started out also.  The same week I finished rads I had a recurrence in the skin on one side and another tumor on my non-mast. side.  It is rare for TN to recurr on chest wall a 2nd time.  But I was told this is a good sign, because it show's our tumor's do not really have a big desire to travel in to distance places like most TN mets do.  So it Good news Bad news kind of a thing...  Did you have a bilt-mast?  Is there any way they can add Avastin to your treatment plan?  This is agreat drug for TN ladies.

Sorry it back...but be glad it not a more serious met. I hope you treatment causes little side effect's.

Flalady

Here I go..taking a big breath of air....ready set go....

First my nodes history:  Had right mast first. 3/06 - 26/27 than 2^nd mast. 6/7- 27/27 than and experimental PET Probe surgery removed 4 more on right chest wall/lower shoulder and under my right armpit. 4/4...OH NO! That's 57 nodes.

1. 1. Dx 11/5 very large tumor right side mast. - bc all the way up to my collarbone, but not in collarbone. Chemo ACT (bc triple on this) - taken out with 1^st mast.
2. 2. 7/6 - One week after completing rads, I found two small tumors in left breast.
3. 3. 7/6 later inflammatory bc on right chest wall. (Can not do 2^ndmast must do chemo first) tx with Gemzar, Carbo & Avastin. Respond with IBC not left breast. Ship off to MD Anderson 01/07 for a really bad Phase Drug trial. Six months later still have cancer in left breast  Finally had left breast removed in 06/07. Had concern of possible met to my saliva gland. Turn out just swollen due to chemo. Also had concern of supraclavicular nodes.  Turned out a blood clot from chemo.
4. 4. 09/07 Recurrence on right chest wall high above the breast but below the shoulder. Also deeper in the axilla on right chest wall. This is where I had the experimental Pet Probe surgery a Moffitt Tampa.
5. 5. 12/07 Recurrence's in left axilla deep in chest wall. And on the right side in the same place. Scan in Mar 08 PET scan showed left side resolved and right side reduced in size while on a natural protocol.  Possible new place showing "next to" rib and the right lung. I should have left well enough alone and stay on this protocol I had setup for myself.  No...but I had to go and change everything and within one month...

6,7,8,9  06/08  Recurrence right and left axilla, right and left superclavicular and higher up on my neck. Also area by rib and lung grow larger.

1. 10. 06/08 Later in the month... recurrence of inflammatory a 2^nd time and much worst than the first time.

So right now of have 7 different places and also inflammatory.  Has anyone every spoke to anyone like me?

I still can't believe how I have been living for the past 2 ½ years.  I have worked pretty much full time through all of this.  I have the most terrific boss in the WORLD!  I have been blessed by God not to have everything happen that my doctor's predicted for me.  That I would live only three to six month's after first mast. I have done 18mth of chemo (not counting this round) with 7 different kinds of chemo's.  (I chose to repeat Gemzar, carbo and Avastin again because I found it very doable.)

Well there is my story and I'm sticking to it.

Thanks from one fighter to another.  CalGal in all the ladies you have spoken to, have you ever meet anyone who had this many recurrences in the chest wall area only?

Flalady

When do you start the time count?  At time of diagnosis or when treatment is complete?

Jacquio,

I researched by reading over 40 books on alternative treatments.  Many of these books repeated the same things on diet and other easier changes.  While not in treatment I did everything recommend and felt GREAT and lost my chemo weight. Big things is getting educated about vitamen's and supplements.  I also used a product that is made near me a part of my protocol.  If you would like some of my notes and book list please PM me a note, and I would be glad to share with you.  Natural prevention and treatments is about detoxing the body and rebuilding it. 

If your not in treatment this is the time to take back control of your body.

flalady

Thanks Vickan,

I on chemo #5 this round and still working full time.  I still take most of my vitamins and supplements.  I will email some of my notes.  Please note some you do not do while on chemo.  Your doctor will not agree...but you have to make the call.  I chose to treat the rest of the body while they treat the cancer.  Please research on the internet about detoxing the liver and colon.  You really need to understand the why too fully decide on doing this.  I do not do enemas like a lot of patients do.  Yuck!  You can not do a hard detox while on chemo.  Save this for the first break you get.  I am convinced that it help me to loss the 25 lbs I gained from chemo, lower my high blood pressure and cholesterol.  I no longer take any of these meds.  My fatigue was gone in fours weeks.  Please find some good books to read.  I do have a list I found most helpful.

Flalady