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All TopicsForum: Stage IV and Metastatic Breast Cancer ONLY → Topic: Complete response to chemo, but had it metastasize?

Topic: Complete response to chemo, but had it metastasize?

Forum: Stage IV and Metastatic Breast Cancer ONLY — A place for those managing the ups & downs of a Stage IV/metastatic breast cancer diagnosis. Please respect that this forum is for Stage IV members only or those posting on behalf of a Stage IV patient. There is a separate forum for Stage IV Caregivers/Family in "Support and Community Connections".

Posted on: Mar 9, 2009 02:22PM, edited Mar 10, 2009 01:02PM by ninel

ninel wrote:

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Mar 9, 2009 03:54PM DianaT wrote:

I was told I had a complete response, was declared NED June 2008 only to have my scans come back February 2009 with a brain met.  It was 8 mm, so we did a cyber knife treatment and started chemo again. 

What circumstances are you looking for exactly? Like symptoms or how it was found? I didn't have any symptoms and it was a routine scan that found the lesion. 

Diana

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Mar 9, 2009 05:53PM, edited Mar 9, 2009 07:18PM by lexislove

There is no guarantee that cancer will or won't come back for anyone. Complete response or not.

All you can do now is prevention. Live your life happy and healthy. Smile

Unfortunatly scans can not detect single cells......so its a wait and see thing. since you are TN I'm sure you hit your cancer agressivly with sx, chemo and rads...or you should have at least.

If your concerned about symptoms the best person to talk with is your oncologist.

Dx:2007, 2B, Triple+, June 2008:Lupron,Zometa,Tamox.Jan 2010:Poor metabolizer of Tamox switch to Femara.Feb 2010: cyp2d6 test reliable? Back to Tamox. Ooph soon.

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Mar 9, 2009 08:13PM ElaineD wrote:

Yes-I had 12 years completely clear between primary diagnosis and mets, which are now in my lung, liver and bone. If you're clear at present, enjoy your life, and try not to dwell on the future-there's no way of assessing who will later go on to develop mets, and who will stay clear.

Dx 11/4/2007, 5cm, Stage IV, Grade 3, ER-/PR-, HER2+
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Mar 9, 2009 08:59PM sherryw wrote:

elaine

Can you tell us what your original dx was 12 years ago..and what treatment you had, lumpectomy or mast

Thanks

Sherry

Light thinks it travels faster than anything, but it is wrong. No matter how fast light travels, it finds that darkness has always gotten there first and is waiting for the light

Dx 2/14/2005, IDC, 2cm, Stage IIb, Grade 3, 3/17 nodes, ER+/PR+, HER2+
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Mar 9, 2009 09:10PM ElaineD wrote:

I had a mastectomy followed by chemo, as  2 nodes were also affected. In the intervening years I discovered that I was BRCA2 so had the other breast removed and a hysterectomy. The only other problems in that time were bowel related. Indeed it was my gastroenterologist who dicovered the mets. While getiing the results of a routine colonoscopy (clear), I mentioned that I had a "tickle" under my left rib. He immediatley ordered a CT scan (I laughed as I thought he was over-reacting). Several days later, the result came back showing mets to the lung. Further investigations then revealed that it had also spread to my liver and bones. I felt well and healthy, with not adverse symptoms at that point. I'm continuously grateful to my gastro-enterologist for his vigilance.

Dx 11/4/2007, 5cm, Stage IV, Grade 3, ER-/PR-, HER2+
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Mar 9, 2009 09:24PM sherryw wrote:

Elaine

Wow you hit it will all they had, and it still came back, boy that B C is tricky.   Have you done any Herceptin ?

Sherry

Light thinks it travels faster than anything, but it is wrong. No matter how fast light travels, it finds that darkness has always gotten there first and is waiting for the light

Dx 2/14/2005, IDC, 2cm, Stage IIb, Grade 3, 3/17 nodes, ER+/PR+, HER2+
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Mar 9, 2009 11:34PM ElaineD wrote:

Yes-done herceptin for a while, and then that stopped working. So am now on tyverb (the drug which is prescribed when herceptin ceases to be effective) and xeloda (oral chemo), and hoping that this might stabilise things for a while. I know that I'll be on one form or another of chemo for life, although may get short breaks if appropriate.

Dx 11/4/2007, 5cm, Stage IV, Grade 3, ER-/PR-, HER2+
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Mar 10, 2009 02:56AM ninel wrote:

How big was everyone's tumor? Stage? Grade? What kind of surgery/treatment did everyone have?

Mine was 1.8 cm with micromets to one lone lymph node. I had neoadjuvant chemo and then bilateral mastectomy. The pathology report from the mastectomy came back clear.

Now every once in a while I get some ache and pain I get scared. The latest is headaches. I've always had headaches every now and again, but now I can't get it out of my head that it went to my brain. I also started taking more on at work and I wonder if it could be stress not to mention the stress from thinking about this cancer stuff.

Dx 6/27/2008, IDC, 1cm, Stage IIb, Grade 3, 1/13 nodes, ER-/PR-, HER2-
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Mar 10, 2009 03:26AM fightinhrd123 wrote:

Hey there,

I had almost your same diagnosis, but i'm HER2+.  I had chemo first and a complete response.  I know how stressful it can be, i had to go see a physciatrist (i know i butchered that spelling) who also had breast cancer.  She put me on Lexapro, which has really helped me not to dwell on the fact I had cancer, but to remember that my prognosis is actually very good, and i should enjoy each day.  I still think about cancer, all the time!!  But my attitude since i started taking lexapro has changed.  I'm not at all saying you need that, but it has helped me. I have all kinds of aches and pains and headaches since chemo.  They all seem to be lingering side effects from the chemo, and side effects from the herceptin.

Hope this helps :)

Laura

Dx 5/29/2008, IDC, 2cm, Stage IIb, Grade 2, 2/14 nodes, ER-/PR-, HER2+
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Mar 10, 2009 04:52AM ChrisC433 wrote:

This may sound like a dumb question, but...

I have read many that were diagnosed with grade 2, stage 2, IDC, ER/PR+, HER2-,with minimal node involvment...just like me.

I am wondering why so many women have had bilateral mastectomies instead of lumpectomies or just one breast removed.  I feel like I am missing something here!  My doc said there is no difference between lumpectomy with rads vs. mastectomy.  Is it peace of mind or better odds??

Very confused...

Chris

Dx 2/5/2009, IDC, 1cm, Stage II, Grade 2, 2/8 nodes, ER+/PR+, HER2-
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Mar 10, 2009 05:18AM ninel wrote:

fightinhrd123- So you're doing well? No recurrence? I have been doing really well. My kids (5 and 18months) kept me quite busy. Then I returned to work. I am stressing about that. Then I stress about the fact that I am stressing. Its all a snowball effect. I have to stop myself and talk myself down from all this crazy thinking.

Chris- The reason I had a mastectomy was becuase I am BRCA1+ and didn't want to risk having a recurrence. I feel it was the best choice for me. I'm also going to remove my ovaries as a precaution since I have a higher risk for ovarian cancer.

Dx 6/27/2008, IDC, 1cm, Stage IIb, Grade 3, 1/13 nodes, ER-/PR-, HER2-
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Mar 10, 2009 06:18AM fightinhrd123 wrote:

I'm doing well, my last chemo was in september 08.  I do excersice a lot, keeps me busy, and my brain is a fog sometimes!!  But overall i'm doing very well.  With a complete response to chemo (and having chemo first they can tell that) your prognosis is very good now (according to my oncologist and breast surgeon anyway)

Dx 5/29/2008, IDC, 2cm, Stage IIb, Grade 2, 2/14 nodes, ER-/PR-, HER2+
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Mar 10, 2009 08:06AM Member_of_the_Club wrote:

Ninel, it is very tempting to try to figure why women with mets are different from you, in order to establish that you are safe.  You can never get there from here.  First of all, you will inevitably find someone who started out just like you and ended up with mets, and that might scare you but it won't prove a thing.  Most women our stage do not get mets.  Some do.  If doctors knew why, they would be able to prevent everyone from getting mets.  The second thing is that some people may feel uncomfortable with this question.  I remember when I was going through treatment and women kept asking me if I have a family history No, BTW).  I felt like they were trying to prove they weren't like that poor sucker with cancer which made me feel bad because I was that poor sucker with cancer.

You've had the best treatment you can and now you should live your life.  Thats all any of us can do. 

Dx 9/30/2004, IDC, 3cm, Stage IIb, Grade 2, 1/17 nodes, ER+/PR+, HER2-
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Mar 10, 2009 08:20AM debic wrote:

ninel,

Member_of _the_club said it best.   Just like they can not tell us why we got it the first time, they do not know who will end up with mets.

On another note I live in Trinity, Fl and we have a group of women of all ages who get together once a month for FUN--- no wine except with dinner.  If you need some support let me know.

Debi

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Mar 10, 2009 08:39AM, edited Mar 10, 2009 08:54AM by SunshineSmiles

Thanks for stepping in, Member.  We've been here time and again.  No one knows why some get mets and others don't.  There's not a secret recipe or common denominator that we know of at this time.  Ninel and Fightinhard, I'd suggest you take this conversation up with your Onc, who can tailor their conversation to your questions and dx.  I find these types of questions difficult, myself, because none of us knows why we are Stage IV.  Sorry to be non-forthcoming, but it makes me feel like I'm some puzzle to figure out, or a curiosity.   That's just me...

Maybe I'm just having a bad day.

Susan 

On another note, there is definitely a difference between a lumpectomy + rads and a mast!  It depends on your dx.  I would guess that your Dr.'s comment was in light of your personal situation.  Women make this choice based on their own intuition, advice from Dr., and various other considerations.  No two dx are ever exactly the same.  In my case, a lumpectomy wasn't an option, as is the case for many women.

"Never, never, never give up" - Sir Winston Churchill - - Age 43, orig dx 5/2005 Stage III;

Dx 11/22/2007, ILC, Stage IV, ER+/PR+, HER2-
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Mar 10, 2009 09:04AM lexislove wrote:

I think the original question...is completely insensitive. And I don't even have mets!!!

SunshineSmiles you are so right...I don't think you are having a bad day. I originally mentioned something to this degree at my first post , but deleted it thinking I was being a bit bi$chy...but no.

Ninel...you want answers annd stats to your case take it up with your onc. No 2 woman are the same, so if you are trying to find someone "like you" good luck.

Ok..let the flaming begin...

Dx:2007, 2B, Triple+, June 2008:Lupron,Zometa,Tamox.Jan 2010:Poor metabolizer of Tamox switch to Femara.Feb 2010: cyp2d6 test reliable? Back to Tamox. Ooph soon.

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Mar 10, 2009 09:17AM ninel wrote:

LexisLove - I'm sorry if I offended you, I had no intention of doing so.

I was under the impression that part of the purpose for this forum was support and information for your fellow "sisters".

Dx 6/27/2008, IDC, 1cm, Stage IIb, Grade 3, 1/13 nodes, ER-/PR-, HER2-
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Mar 10, 2009 09:22AM, edited Mar 10, 2009 09:23AM by lexislove

Ninel...it is.

But do you know how many times the "mets" woman get these kind of questions posted to them?

I'm guessing it can get quite tiring and annoying. Having mets is one thing...but having people trying to find out if "they" will end up like "them" is a bit much.

Sorry...we are here to support each other of course...you are in the right place but the best person is really your onc to talk about these matters. I have been where you are too. I just now realize that nothing is guaranteed and noone can predict any one of our futures. This IS hard I know...but it is what it is. Enjoy your kiddies.....and your prognosis is excellent so run with that!

~~* cheers ~~* Smile

Dx:2007, 2B, Triple+, June 2008:Lupron,Zometa,Tamox.Jan 2010:Poor metabolizer of Tamox switch to Femara.Feb 2010: cyp2d6 test reliable? Back to Tamox. Ooph soon.

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Mar 10, 2009 09:30AM badboob67 wrote:

You know, depending on the day (or even time of day) I could go either way on questions like these. On the one hand, I don't mind offering information and realize that many with earlier stage cancers have fears and questions that they either don't or won't ask their doctors. I guess that's the "Golden Rule" part of me; I try to be helpful/informative when I can because I hope others are the same with me when I have questions.

I must tell you, though, that I have responded to these types of posts less and less over the last several months. I am tired...I am dealing with the s/e's of chemo and I'm dealing with the "whole package" as it relates to mets and sometimes (make that MOST of the time lately) I don't have the mental or emotional energy to respond without risking being very rude or hateful. I don't want to scare the ever-loving crap out of someone who is already frightened by a terse response but then again, I find I spend entirely too much time delicately wording responses. 

Maybe we should ask for a "sticky" at the top of the Mets section that reads something like, 'NO ONE KNOWS WHAT CAUSES METASTATIC DISEASE. NO ONE CAN PREDICT A TIME LINE BETWEEN FIRST DX AND METS. EVERYONE IS DIFFERENT WITH UNIQUE TUMOR PROFILES AND PHYSICAL CONSTITUTION AND COMPARISONS ARE GENERALLY NOT USEFUL AS A CLINICAL/DIAGNOSTIC TOOL. IF YOU ARE HAVING SYMPTOMS THAT YOU BELIEVE ARE CAUSED BY METASTATIC DISEASE, YOU ARE BEST ADVISED TO CONSULT YOUR OWN HEALTHCARE PRACTICTIONER OR DR. GOOGLE AS YOU ARE UNLIKELY TO EITHER DIAGNOSE OR RULE OUT METASTATIC DISEASE BY POSTING A QUESTION ON THIS SECTION OF THE BOARDS"

Of course, then there are those of us--like me--with one type of mets (bone) who wonder about the symptoms of other types of mets--so I guess I'm a little hypocritical.

When you're down to nothing, GOD is up to something! http://bb67.wikispaces.com/

Dx 2/15/2006, IDC, 5cm, Stage IV, Grade 2, 24/27 nodes, mets, ER+/PR-, HER2-
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Mar 10, 2009 09:32AM LAM2009 wrote:

Lexislove - YOU are the one being insensitive now. 

Ninel - Good luck.  I hope your treatment is going well.  It is only normal to worry.  You are young with small childrdren and want to be around for them.  It is understandable.  Have you become part of a BC support group in your area?  That may be an option for you down the road sometime.  Just a thought.  All the best to you.

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Mar 10, 2009 09:34AM, edited Mar 10, 2009 09:37AM by lexislove

Ya ok....

I'm young too actually younger than Ninel..I'm 31.

I'm sure that there are many "mets" woman who feel the same as me..So I guess badboob is insensitive too..or maybe she is just over reacting...Undecided

Dx:2007, 2B, Triple+, June 2008:Lupron,Zometa,Tamox.Jan 2010:Poor metabolizer of Tamox switch to Femara.Feb 2010: cyp2d6 test reliable? Back to Tamox. Ooph soon.

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Mar 10, 2009 09:35AM badboob67 wrote:

Seriously, LAM2009--Do YOU enjoy strangers who do not have bc coming up to you and asking WHY you have cancer?

When you're down to nothing, GOD is up to something! http://bb67.wikispaces.com/

Dx 2/15/2006, IDC, 5cm, Stage IV, Grade 2, 24/27 nodes, mets, ER+/PR-, HER2-
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Mar 10, 2009 10:09AM ElaineD wrote:

Can I suggest that thse members who are not stage 1V maybe stop to consider how these type of questions can be realistically answered by us? All we can responsibly say is "check with your onc"-we are medical experts through necessity, but of our own prognosis. We try to help, honestly we do, but the name of the board is not "do I have mets, and if not, when will I develop them?"

At stage 1V we are living with the certainty that one day, baring a miracle, with our treatment options being limited, we will die from cancer. We are stage 1V, terminal. Carrying that knowledge is a dreadful burden-and surely the prime reason of this board should be for us to support each other through our treatments. A place where we can discuss and face our darkest fears-without wondering if we are upsetting non-metsters by presenting the type of future which most of us wouldn't wish on our worst enemy.

I think badboob's idea of having a sticky at the top of the board is excellent. All who are affected or concerned about cancer are free to post here-it's not a board restricted to metsters-, but before posting, it would be good if instead of jumping in with the "what are the signs of brain/bone/lung mets", posters would stop to search existing threads.You'll find the answer there, as the questions are asked so regularly.

As it stands,many metsters are now choosing to post instead on the palliative board.....

Dx 11/4/2007, 5cm, Stage IV, Grade 3, ER-/PR-, HER2+
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Mar 10, 2009 10:20AM, edited Mar 10, 2009 10:34AM by SunshineSmiles

Lexislove, Thanks for voicing what others of us are maybe too timid to say.  We metsters are definitely supportive and encouraging to each other, and usually everyone else.

Ninel, I don't feel that my job while visiting the METS board is to reassure every sister who has ever been afraid of mets.  I'd have posted your question somewhere else, like "Moving on".  To answer your first question, most of us have been in the early shoes of finishing treatment and hoping for the best.  We weren't all stage IV from the start, in fact, quite the opposite.  Most of us were once just like you.

But I mean really... this request was what really did it for me:  "How big was everyone's tumor? Stage? Grade?  What kind of surgery/treatment did everyone have?"  

This question screams "Hey everyone, I'll feel better if I rule myself out by comparing my story to all you metsters."  I found the intent of this question very insensitive.  It was glaringly obvious that you are trying to reassure yourself that you won't be one of "us".  I don't find that to be supportive or appropriate.  

 And this from SherryW:  "Wow, you hit it with all they had, and it still came back, boy BC can be tricky."  Do you have any idea how this comes off to us?  I just want to say "Uh, yeah, that's how mets happen."  Again, it's the You/Us thing.  Yes, we did hit it hard, we took it all and we still do... again, and again, and again.  It comes back... That's why so many women die of breast cancer!!  Again, I feel like a spectacle.

Me and my sisters here are real women, with emotions, scary diagnoses and difficult situations. These posts make me feel like a freak.  I hope you can understand why, and that you're not missing a "sensitivity button."  

And let me just say, I'm a really nice person who has never posted something as terse as this before.  And I am still being nice.....

I've refined and rewritten this half a dozen times.  Enough.  I'm hitting "submit".

"Never, never, never give up" - Sir Winston Churchill - - Age 43, orig dx 5/2005 Stage III;

Dx 11/22/2007, ILC, Stage IV, ER+/PR+, HER2-
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Mar 10, 2009 10:29AM Member_of_the_Club wrote:

One other reason not to post "is this a sign of brain mets" kind of question is that someone will tell you, YES, that is exactly how it started for me.  And then what do you do with that information, get scared?  See your doctor (which you should be doing if you have concerns anyway).  I learned this the hard way very early on when I was having sinus headaches and posted such a question here with the metsters only to learn that one woman did indeed have similar symptoms before being diagnosed with brain mets.  This got me nothing except leaving me curled up in the fetal position on the couch.

I think all of these questions can be posted in the moving on section.  Many of us moving onsters have been here for years, have had every imaginable scare and faced all sorts of situations.  We can help, or say to see your onc, or whatever.  But women going through treatment for mets need a safe space to discuss their issues. 

Dx 9/30/2004, IDC, 3cm, Stage IIb, Grade 2, 1/17 nodes, ER+/PR+, HER2-
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Mar 10, 2009 10:49AM vision2020 wrote:

Now Now NO fighting. She was just asking a question...

Dx 9/7/2004, IDC, 1cm, Stage IIb, Grade 3, 6/12 nodes, ER+/PR+, HER2-
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Mar 10, 2009 10:54AM badboob67 wrote:

Cool....now we have a referree. 

When you're down to nothing, GOD is up to something! http://bb67.wikispaces.com/

Dx 2/15/2006, IDC, 5cm, Stage IV, Grade 2, 24/27 nodes, mets, ER+/PR-, HER2-
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Mar 10, 2009 10:57AM, edited Mar 10, 2009 10:57AM by SunshineSmiles

Excuse me??? Since when do you call the shots on a conversation that doesn't concern you? Obviously it's not so simple, and you're not involved so why are you here? 

"Never, never, never give up" - Sir Winston Churchill - - Age 43, orig dx 5/2005 Stage III;

Dx 11/22/2007, ILC, Stage IV, ER+/PR+, HER2-
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Mar 10, 2009 11:02AM badboob67 wrote:

Maybe she's a kindergarten teacher and is still in "work mode".  I know I had the impulse to go  stand in the corner after I read her post. <snicker>

Holy cow....

When you're down to nothing, GOD is up to something! http://bb67.wikispaces.com/

Dx 2/15/2006, IDC, 5cm, Stage IV, Grade 2, 24/27 nodes, mets, ER+/PR-, HER2-
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Mar 10, 2009 11:15AM LJ13 wrote:

Wow. I thought the Alt forum was hot.

Worry is a misuse of the imagination.

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