Recurrence versus time

[CLTann]

several people have sent me messages on this topic, asking where they could view the data. I discovered the following thread:

http://breast-cancer-research.com/content/9/3/208

This article shows the maximum rate of recurrence after 12 to 16 months from first diagnosis.

My own onc told me that there are newer data to show that the recurrence rate remains high after 18 months. I couldn't find any data to support his assertion.

[madubois63]

If I listened every time some chart or doctor said I had just so long to live...Honey PLEASE don't waste your time or energy on such a stupid number. I am 8 1/2 years out from Stage IV Inflammatory Breast cancer (the worst of the worst). After 4 years (that I didn't have according to them), I had a relapse that went to my lungs and liver...not much time left according to "them" again. Well, I beat it, got leukemia and had even less time. Had the bone marrow transplant, and that was a year and a half ago. I have since had to liver "failures" that didn't leave me much time either...but I am still here and doing better than ever.

[AlaskaAngel]

Hi Ann and Maryanne,

For me the article is helpful information. I don't think of it as frightening or negative. Maybe down the road when additional information has been collected and counted, we will have more accurate information about the results of current therapies to support hopes and guesses -- or to make changes in our decisions about treatment. The extended time to recurrence can mean that more of us are likely to be around for the use of much better treatments by then. Knowing that later recurrences are possible can help some of us make the decision to take on or stay on recurrence prevention treatments now that we otherwise might think aren't really necessary.

AlaskaAngel

[harrie]

Whoa Maryann....8 1/2 yrs out of Stage IV!!!
I always love reading your posts....
Muchas alohas,
Maryanne

[Mary Jo]

Whoo hoo to Maryann...........our OWN "madame dubois"............if anyone tells statistics to MOVE OVER it's you "sister" and Ann, thanks for sharing your article with us.

Hugs...............

Mary Jo

[Becky]

And a top runner can get hit by a bus training for a marathon this morning. Everyone dies but only God knows when.

[Carolyns]

Hi Ann,

Tumour Dormancy is and interesting theory. I had not read about that before and found the article interesting. I was first diagnosed in my early 30s about 20 years ago. I am now Stage IV. I had bc in the right breast in 89, left breast in 99 and Mets in 2006.

I believe I was at the beginning of a trend for younger women getting breast cancer. I am not sure if the percentage of young women getting breast cancer has increased but back in 1989 I could only find one other women my age with breast cancer. Now I routinely see women in their 20's and 30's at my center.

My case is very unusual but I always insisted on follow up beyond the 5-year mark. I never believed that there was some magic time line that I could cross and forget about my breast cancer risk. I never wanted to find out that I had been left unchecked if BC came back...early detection...hmmm How does that apply to me?? I wondered. What do I do without breasts left to mammo???? That said, I always hoped I was wrong and that cancer was gone for good. I still do after each infusion...go figure.

Good article.

Carolyn

[swimangel72]

Becky - my philosophy exactly! Each day is a precious gift to be used wisely!

Ann - looks like a cool article - but it's too early in the morning for me - maybe after I have a cup of coffee my eyes will focus better!

[sassy]

At one point during treatment, my onc and I had a conversation about dormant cells. He had seen research indicating that dormant cells may "hide" in the bone marrow, not exposed to chemo, monoclonal antibodies, or hormone treatment. The domant cells remained there until they were "turned on" by something.

Since he is no longer my onc, I can't ask him about this, but am interested if anyone has seen information concerning this.

[hutchibk]

Ms Dubois - I am not a fan of stats or predictions either. The numbers are essentially put in a blender and averaged out, so they don't really apply to the individual. Stats and averages are always going to be a moving target because they take time to compile, and by the time they are compiled and the math is done, there is a new discovery or treatment that changes everything.

I have always been intrigued by the idea of dormant cells, too. I hope there is more info and research about this theory in coming months and years.

[SoCalGal]

Interesting. I think I fit the model. CMF first time around. NED for 6 years then local recurrence. Local recurrence in the same tiny spot 3 times over the next 6 years and then **POOF** stage 4. Encore. But not my final act. --Flori

[Mary Jo]

And me, I'd rather keep my head in the sad and not know about "dormant cells" Those buggers better be gone is all I can say. Thinking too long and hard on this topic is depressing so I'd rather not go their...................

So.............why am I participating in this post????http://her2support.org/vbulletin/images/icons/icon12.gif

Mary Jo

[hutchibk]

Because that's what support groups do, I suppose, they make us pop our heads out of the sand from time to time, even if we don't wanna. LOL....

[dlaxague]

Thanks for posting this, Ann. I think that we all intuitively know that dormancy has to be happening (where the heck else would those cancer cells BE, to allow 20 years of NED and then they suddenly form a tumor?). But what I find harder to get my head around is the discussion about treatment not having any effect on late recurrences. It says something similar to that on Peter Ravdin's "Adjuvant!" calculator and I could never understand it. After reading this article I guess that it makes a little more sense. Chemo, we know, works on actively-dividing cells, which would not describe a "dormant" cell. The stem cell theory may be a part of the explanation for what's happening also. But that's far from the whole answer.

Anyway, this article is understandable, talks of new (to me) concepts, AND it has provided links to almost all of its references, most in full text. Some of the references are as fascinating as the article itself - go explore them!

However, as Brenda notes, all of the information in all of these studies is old news for someone diagnosed today. In addition, some of those studies don't even break it down by ERPR status, let alone HER2. In a group as broad as "node positive breast cancer", many things that would apply to, for example, HER2+ or ER- cancers could be hidden. As has also been noted, even detail-specific statistics do not say anything helpful about what will happen to any one woman or man. Their use to us is mostly in making treatment decisions.

I don't find this information to be scary or depressing. We already know that for some, cancer returns and causes death. This is just one explanation of how that might happen, for some, in some instances. Each bit of information and understanding inches the way toward better control over cancer.

One question answered, six more take its place as we delve deeper into understanding cancer.

Debbie Laxague

[hutchibk]

I love that Debbie - "...for every one question answered, six more take its place as we delve deeper into understanding cancer..."
so true so true, as with so many things in life.

Brenda

[jenniferz]

Being hormone receptor positive, this leaves me a bit flat. (pun intended--;-) ) I'm kind of like Mary Jo, and keep this fuzzy grey head in the sand. However, I do know that cancer is a crap shoot, so does anyone really know when and if? Of course not.

And off I go, back to the sand box!

Jennifer

[mts]

Some cancer authority yesterday on TV argued that cancer is like a termite colony. There are just a few of these "queen" cells that remain hidden whilst all the others are killed off by whatever is infused into the body. His research is in discovering how the queen cells overcome or are immune to anti cancer drugs. It was with Sanjay Gupta on Saturday morning. Sanjay has a habit of only providing peripheral informaiton, so it was over before it even got started. The colony concept however was an interesting analogy.

Maria

[Catherine]

Love to read all of your posts. I scanned the article and may read it more completely later. All of your wisdom and humor is greatly appreciated by me.

Have a good week and be good to yourself.

Hugs, Catherine

[PinkGirl]

This is an interesting thread. Thanks for starting it CL.
I like reading about research that I can understand.

When I was first dx. a GP talked to me about
breast cancer being considered a chronic disease. He told
me about the lack of knowledge regarding why breast cancer
cells become dormant and what wakes them up years later.

I appreciate knowing these facts. I know it doesn't tell me
what's going to happen to me but I've never been one to
stick my head in the sand. Thanks for posting that interesting
article.

[goops]

I found the article helpful, I was considering getting a new puppy to celebrate my first cancerversery, but after thinking about my 2
14 year old dogs, and seeing that info, I decided to try and put it off for 1 year. I am sure I have beat my cancer, but it would be heart breaking for me (as well as the Puppy) if I got him and then became to ill from cancer treatments to keep him.

As for Mary Ann I am glad you proved them all wrong, I am sure your positive attitude went a long way towards keeping your cancer at bay.

[Hopeful]

Debbie,

Dr. Radvin made the following comments in a Breast Cancer Update issue in 2003:

"Impact of therapy on early versus late relapses

The divergence of curves with effective adjuvant therapy has not been adequately studied, and I think there is an enormous hidden story there. Some curves begin to diverge within the first year, continue to diverge for the first five years and then parallel each other. Curves like this tell me the therapy is killing the rapidly progressive, early relapsing clones.

The last overview showed that the proportional benefits for chemotherapy emerged entirely because of impact on relapses within the first five years. There was no impact at all on relapse from the average chemotherapy after five years — a fascinating result. (emphasis added)

With chemotherapy, we are not yet touching the late, slowly proliferating population, which accounts for perhaps one-third of all relapses, particularly in ER-positive disease. This is where vaccines may be of particular benefit. In contrast, there was a curve for a particular therapy presented at San Antonio that showed no difference in the first five years, but the advantage accumulated in the second five years. The curve suggested the therapy showed no advantage against the rapidly progressive clones in the early relapsers, but that the advantage emerged in the late relapsers.

Hormone therapy is more balanced than chemotherapy in the impact on the second five years. In NSABP P-1 and B-14, the curves actually slightly diverge. The therapy is probably acting on the slower and stalled clones. This has not been adequately studied, and I think it’s worth some additional research."

link: http://www.breastcancerupdate.com/bcu2003/2/ravdin.htm


Hopeful

[Jean]

Data on early stagers who were treated with herceptin/
and chemo plus herceptin is not in. I believe this will have an important impact on recurrence stats.

When I had my lumpectomy surgery at Cornell there was a study being done on patients that were early stage bc, node negative. The dr. were performing bone marrow biopsies to study dormant bc cells.

The mechanisms underlying tumor dormancy in breast
cancer remain poorly understood and this presents significant challenges to both experimental investigation and clinical management.

What makes the cancer sleep and what wakes it up?

In any event....as Maryann has proved "The stats can be /and will/be wrong..while we all share this nasty disease, we each live in our own DNA...and as Becky said, anything can happen any day of the week, so
enjoy each day and live it to the fullest. We are lucky in a sense, for we have learned through our bc dx. not to sweat the small stuff and most of all a deeper understanding of "What is really important" from day to day.

Hopefully the near future will bring us more details and answers.

"Each Day We Get A Little Bit Closer"
Jean

[Jackie07]

What a wonderful thread!

My own experience on 'recurrence' was that by definition, cancer is the kind of disease that is hard to be completely rooted out of one's system. Either the surgeon missed the cancer cells (in my case, a big chunk) or the cells are hard to kill (the 'dormant' ones?)
But that is why they are called 'cancer' - something that is hard to treat; something that could spread, recur, and become fatal.

In the old days, they were called 'incurable' diseases. These days, they are viewed more as chronic illnesses.
In my own experience, it became chronical because of 'human error' ... But, according to our mechanic friend who survived both Vietnam and skin cancer: "Everybody is terminal..."

So, I just take it as God's special arrangement for me to understand life and its important ingredience: living, loving, and laughing.

[harrie]

I finally got around to reading the article which I found to be very interesting. Thank you Ann.
Working to understand the relationship between delayed recurrences and the significance of dormant cells could very likely result in many more lives saved in the future.
It was 2 yrs after I ended my 5 yrs on Tamoxifen that I had this last recurrence.
It was also a few months after I started using the Premarin cream (sparingly) that I had this past recurrence.

[Mary Jo]

Just took my head out of the sand and brushed it off..............hmmmmmm, still an interesting topic.

Hey, I forgot to say something the other day too...while in for my 6 month check up last week I told my nurse and onc. about her2support. They never heard of it. I told them all about it and they were going to check it out for themselves and then, possibly, refer this site to other her2 patients.

Ok - back underhttp://her2support.org/vbulletin/images/icons/icon12.gif

Mary Jo

[pattyz]

goops,

We've taken into our home four (rescued) aged fur-babies over these past yrs since dx. and mets. Two are romping where all good doggies go... and one of them died from maglignant melanoma.

The 'kids' are the only thing that get me going on the days where nothing else will. Our need for eachother is symbiotic.

Losing one... well I don't have to go there, I'm sure you know. But, GIVING them a second chance, a loving 'forever' til the end home, these are more meaningful to me in the big picture.

As to the main topic here! I find value in all that's been said and reported, yet hold firmly to the 'crap shoot' theory.

Inflammatory and Invasive 6-26 pos. nodes MRM Jan. 2000. Stage IIIb er+pr- not Her tested until:

Mets to mediastinal nodes/spots on lung/pelvis July 2002. Her2+++

Mets to brain (first time) Sept. 2002.
Mets to brain (2nd time) March 2003.
Mets to brain (3rd time/current) March 2005.

So, my by my count, that's nearing 9 yrs from the beginning and close to 6 for brain mets... and I've done practically no 'standard' of treatment throughout.

I had the MRM first, then A/C and no rads.
Did just two months of Tamoxifen, then nothing.

On body mets dx: Navelbine/Herceptin til 'NED' - 3mos. that's it.

Brain mets dx: have had no WBR, but many focalized. And have responded in one way or another to Xeloda/Temodar since 8/05.

Part of what I'm trying to say is that I did not do the 'right' thing as far as known standards of care. So those things have not been the reason for my extended expiration date... thus the 'crap shoot' theory. And I do know it applies to many others, too.



just my veiw...
pattyz and fur-kids (ages: almost 59, 12 and 7)
Lyle (just turned 71, on Tamoxifen, feeling good)

[MJo]

Goops - Just remember, a super healthy person could adopt a puppy and then get hit by a bus. When I was younger, it never occurred to me to make arrangments for my dog in case something happened to me. I'm older and wiser. I don't have a pet now, but with my last old buddy I got a commitment from my brothers to care for him if something happened to me. And that was several years before I was diagnosed!!

As for the article, it's very interesting and sobering. Another reminder that life is precious and we need to enjoy every minute. Maybe I'll adopt a dog!

[AlaskaAngel]

Likely this is where any proactive practices could make the most difference on an individual basis:

RB's suggestions on balancing fats
Regular exercise
Obtaining and maintaining proper body mass index
Getting good skin exposure regularly to the sun (not too much and not too little)
RobinP's tea consumption
Anti-inflammatory use like aspirin or curcumin
Using glass and such instead of plastic for microwaving
Diet (like organic food and more fruits and vegetables)
Avoiding parabens
Starting or staying on any preventive medication

A.A.

[harrie]

Another one who beat the odds...lance armstrong. If you have not read his book, recommend it.

[trailrider]

Ann,

This is my first post and it was your post that spurred me on to register. I have been quietly listening for over a year to everyone. The information on recurrence for me is something I find very useful. While I can understand that not everyone feels that way. Thanks for the post.

[harrie]

Ann, how nice of you to join us! And what a great picture of you and your 2 handsome young men!
Maryanne

[CLTann]

Barbra,

Your message gave me a great deal of satisfaction that someone appreciates what I have done here. I thank you for joining this group and am flattered by your remark that my sharing of info is the key point for your decision. There are many others who frequently post relevant bc researach findings and many of us benefited from their postings.
Welcome.

Ann