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Topic: Whats with this 5 year mark

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: Jun 18, 2009 07:36PM

LynnW wrote:

I find it strange that when I was first diagnosed they told me I had had the cancer for a while. Likely two years before they found it. Even with mammos.    Therefore since its come back now after 4 years Im actually at the 6 year mark and its come back. Hmmmm So much for the majic finish line to cross.   If it was only last year that they found it ... it would be a year until it came back.  How do they reason that 5 years is a majic number. I have read so many posts of people who had the cancer return 7 and 8 years later.   Its all so crazy to me.  I think if they find it early,,, and you do well for 5 years then they give you some hope that it may not come back.  But for many of us especially lobular girls.. its often found very late. We are all passing the 5 year mark if you stop and think about it..  I am now wondering if all the treatments they give us is playing a part in this time span.  Its also confusing me that some women have had the cancer not found in the lymph nodes,, yet its come back.  They tell us the lymph node involvement  determines the seriousness,, and yet thats not so true. I wish they could narrow this down and at least make sense of their numbers. Alot of money has gone to research and yet their research contradicts itself many times.   Something to ponder. Too much time on my hands. lol

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Jun 18, 2009 11:36PM ElaineD wrote:

I agree with you Lynn. I was 12 years between primary diagnosis and mets. I'm perhaps too much of  a fatalist and feel that if it's going to recurr, it will do so in it's own time! So I tend not to pay too much attention to figures. Having said that, it's great hearing about sisters with mets who survive beyond the "norm". But for the vast majority of us, a stage 1V diagnosis is still a nightmare of hoping to have some response to treatment.Very few of us will defy the odds, whatever we do/think. I've recently noticed a fair amount of posts about "getting through treatment", etc, as if there will possibly be a happy end to our individual nightmares. So many myths/misconceptions still seem to hold sway-and I guess the 5 years one may just be another one of them! 

Dx 11/4/2007, 5cm, Stage IV, Grade 3, ER-/PR-, HER2+
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Jun 19, 2009 12:16AM Nanalinda wrote:

From what I understand; the 5 years is for triple negative cancer only.  They say once you reach the 3 year mark, your chance of recurrence decreases and once you reach 5 years the risk of recurrence is very low.  If your cancer is hormone fed, or you are HER2+ the risk of it returning does not go away at 5 years.  I only made it a little over a year when mine returned as mets.

Dx 7/26/2006, IDC, 3cm, Stage IV, Grade 3, 0/1 nodes, mets, ER-/PR-, HER2-
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Jun 19, 2009 01:32AM pookie61 wrote:

I think lymph node involvement plays a role, but for me that is only a small part of the story.  I did not have any involved nodes, but I did have lymphovascualr invasion, which is a poor prognostic factor.  For those of us with a small cancer, no node involvement but with this invasion I think we are undestaged. 

In terms of years I look at time differently from the doctors.  If you survive 5 years with cancer then it seems like the cancer establishment feels that it is a success.  I know I feel very differently.

Dx 10/10/2008, IDC, 1cm, Stage IV, Grade 2, 0/3 nodes, mets, ER+/PR+, HER2-
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Jun 19, 2009 03:30AM MJLToday wrote:

5 years is not a magic marker for breast cancer at all, especially with the "newer" treatments that have come out in the last 20 years.

For any cancer, it used to be most people passed away in the first 5 years, so if you had survived to 5 years then odds were good you were not going to recur.

But with tamoxifen, then AIs, and the stronger chemos & herceptin, the time to recurrence is being streched out.  Which is a good thing.  But still confusing and frustrating when other people think 5 years is a magic marker or something.

MJ '98 Stage 2 ER+/PR-/Her-, AC+Tam: Sep 08 bone/liver mets. Arimidex,Faslodex,Zometa thru 12/09, Aromasin+Everolimus thru 03/10, Abraxane thru 3/11,Xeloda 8/11,Armed Activated T cell trial 9/11, Taxotere/Gemzar now

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Jun 19, 2009 03:42AM karen_3 wrote:

5 years is just what ACS uses as a marker to make it look like they are getting somewhere with curing this crap.  YES, cancer does come back in 6-7- even 12 years later - but if the numbers that were posted by American Cancer Society took into account recurrence over your lifetime - those numbers of disease free survival would be statistically much lower.  I sometimes think that the treatments they give us just keep the cancer away for 5 years so that we can be included in the 5 year DFS rate - like Tamoxifin for example.   The more research I have done (and I've done a lot) the more I realize that there is much that remains a very big mystery regarding cancer.  I have noticed quite a lot of ladies with stage 4 mets on this board that originally had very small tumors, stage I or II and no lymph node involvement and later on had mets.  Five years is no window of safety - though I desperately really wish there actually was a safe window.  We need to foster hope here, positive attitudes are very necessary to fight this.

~ Karen ~

Dx 2/6/2009, IDC, 3cm, Stage II, Grade 2, 0/6 nodes, ER+/PR+, HER2+
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Jun 19, 2009 03:48AM Member_of_the_Club wrote:

My understanding is that 5 years means nothing for breast cancer.  Most people don't realize that and they think if we make it to five we're done.  I now don't tell people how far I am from diagnosis (four and a half years) because they will inevitably say I'm close to the finish line.  This spooks me, even knowing that five years means nothing.

Dx 9/30/2004, IDC, 3cm, Stage IIb, Grade 2, 1/17 nodes, ER+/PR+, HER2-
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Jun 19, 2009 05:02AM Veryhopeful wrote:

I agree that breast cancer is different in that it is USUALLY slower growing than the other cancers.  That's why  someone can finish treatment and be NED and actually have a recurrence years down the road.  There may be dormant cells that "wake up" after many years have passed. 

 Interesting that I watched that Farrah Fawcett story on television about her cancer.  She was perplexed why the cancer returned and the doctor said that you're never considered cancer-free, but rather, you're tumor-free.  He said cancer can always return. 

 However, the more years that pass with you being cancer-free, the less likely it will return.

 The lymph nodes may be clear and there may be no vascular invasion present.  BUT.....it can still travel through the blood stream.  And sometimes they just miss it in a test.

 Wishing good luck to all.....

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Jun 19, 2009 05:04AM VickiG wrote:

I think the comments from docs about how long we've been walking around w/ cancer before being dx'd is that they est. it to take 5-8 yrs for a tumor to reach 1 cm in size, so when we are dx'd it isn't like cancer just popped up that day... but they don't count the time before dx in the survival rate stats since those start from the actual time of dx.  The 5-yr mark isn't specific to bc, it's just a stat that is used for all types of cancer to show the probability that a patient will still be alive 5 yrs out... not that once you hit that mark you are done w/ cancer forever.  (Wouldn't that be nice, tho!)

Vicki

Dx 6/9/2007, IDC, Stage IV, Grade 3, 10/14 nodes, ER-/PR-, HER2-
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Jun 19, 2009 07:39AM LynnW wrote:

Yes Vicki,, thats what I was questioning.  I likely had this monster for 2 years before it was found which means after 4 years with it I'm actully 6 years before its come back.  I knew I was high risk as well as 10 of 19 lymph nodes were positive,, yet some women I know had it return where there was no lymph node involvement at all.  Very mysterious.

Another thought.  My mother had breast cancer 33 years ago. Thats when they found it had traveled to her collar bone lymph node.  Thats actually the lump they found and had to back track to find it had started in her breast.  Anyway,, she lived another 10 years after it had traveled to her intestine,, which is very rare.  She was taking an experimental pill all those years which showed shrinkage of the tumour and it kept it small until finally it stopped working.  She passed away in 1987.  Ok,, that was 20 or more years ago..    I guess thats the reality I'm dealing with.  10 years with met breast cancer is a good thing and especially back then.  At the rate I'm going I don't see a 10 year survival and it seems with technology,, stats should be better.

prayers and huggs to all of you. 

Lynn

Dx 2/9/2005, ILC, 6cm+, Stage IV, Grade 3, 13/29 nodes, mets, ER+/PR+, HER2-
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Jun 20, 2009 07:08AM katie11 wrote:

When my bc was discovered, it had already travelled to the bone; there was no lymph node involvement, though, as the cancer had spread through the blood stream.  I guess they have to use some kind of benchmark to help them measure the success of new treatments but I don't understand why 5 years in particular because as far as i can tell, there is no magic number when you're fighting this damn disease.

Hope for the best, prepare for the worst!

Dx 7/15/2006, ILC, 2cm, Stage IV, Grade 2, mets, ER+/PR+, HER2-
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Jun 20, 2009 07:52AM Brenda_R wrote:

quote/ they est. it to take 5-8 yrs for a tumor to reach 1 cm in size /quote

True for her2- maybe, but not for her2 positives.

I had a clear mammogram and 6 months later I had a 4 cm lump and a 1 cm positive node.

We went back and looked over the previous films and there was nothing there.

Most her2's have rapid growing, aggressive CA's.

Dx 12/12/2006, IDC, 3cm, Stage IIIa, Grade 3, 1/17 nodes, ER-/PR-, HER2+Surgery 12/29/2006 Lumpectomy (Right); Lymph Node Removal: Axillary Lymph Node Dissection (Right)Chemotherapy 01/28/2007 Adriamycin, CytoxanRadiation Therapy 05/01/2007 ExternalTargeted Therapy 07/10/2007 Herceptin
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Jun 20, 2009 10:34AM VickiG wrote:

I had a clear mammo and 5 mos later found a lump.  Mammo was still clear but it turned out it was a nearly 2 cm mass.  When Mayo was finallly able to show it on a mammo, I also had an MRI that showed a 2nd mass nearly the same size which also did not show up on the mammo.  Mammos do not necessarily show everything, even when it can be felt.  Triple negatives would certainly be THRILLED to get to have slow-growing, non-aggressive tumors, though!

Vicki

Dx 6/9/2007, IDC, Stage IV, Grade 3, 10/14 nodes, ER-/PR-, HER2-
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Jun 20, 2009 11:09AM Brenda_R wrote:

When I found my lump, they sent  me for a diagnostic mammo and US. It showed up very clearly on that mammo and US. So mine wasn't hidden in the mammo.

Dx 12/12/2006, IDC, 3cm, Stage IIIa, Grade 3, 1/17 nodes, ER-/PR-, HER2+Surgery 12/29/2006 Lumpectomy (Right); Lymph Node Removal: Axillary Lymph Node Dissection (Right)Chemotherapy 01/28/2007 Adriamycin, CytoxanRadiation Therapy 05/01/2007 ExternalTargeted Therapy 07/10/2007 Herceptin
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Jun 20, 2009 11:44AM, edited Jun 20, 2009 11:44AM by ddlatt

here are some interesting statistics:

http://www.cureresearch.com/b/breast_cancer/prognosis.htm 

i'm triple negative, and 5 years is a big achievement. but the way i look at it, i have a 50% chance of cancer recurring at any time, and 50% chance it won't. so i don't worry about statistics and how long i will live. i just take it day by day, stay as healthy and as happy as i can be.

DX age 54. IDC. Stage 1, 1.2cm tumor 1 millimeter from chest wall. Had ultrasound, MRI, core-needle biopsy. Sentinel node biopsy (nodes clear) and double mastectomy 11/20/08, no reconstruction. AC/ Taxol, 35 tomotherapy radiation treatments.

Dx 10/3/2008, IDC, 1cm, Stage I, Grade 3, 0/2 nodes, ER-/PR-, HER2-
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Jun 20, 2009 02:11PM ClaraIsabel wrote:

I was diagnosed in 7/2003 with stage IIb, one lymph node pos. Had chemo ac/taxotere and rads. I was given vague info from the onc, but I was under the impression that it is much more likely to have a recurrence in the first 2 years. Five year mark is a number they have come up with, a surgeon told me, but it is no assurance to be home free. All it means it is less likely that the cancer will recur. We will spend the rest of our lives somewhat in fear. Then there is always the possibility of a second primary, for which we are also at an increased risk.