Definitive answer? When does the clock start ticking - Page 2

schoolteacher · 03-03-2011, 01:31 PM

Coolbreeze,

I will be 53 in July. Cancer has really changed my perspective about life. I cherish every day, even when things are really rotten.

I was told that recurrence can typically occur around 22 to 26 months from the date of surgery.

I had my masectomy on April 16, 2008, and a suspicious nodule showed up on scans during February 2010. I had it biopsied, and it was found not to be anything, and I truly wonder if they missed the spot. July 2010, I was scanned again, and it was felt that I did have cancer in my lung. I came off Herceptin for a five week wash out period, and places grew while I was off the Herceptin. When I went on the EMELIE trial taking Xeloda and Tykerb, the spot shrank and one spot disappeared.

If I have correctly counted, the first possible nodule appeared right at 22 months, then it was confirmed right at 27 months.

Everyone is different, but this is what occurred with me.

Amelia

Cal-Gal · 03-03-2011, 09:12 PM

The people at Komen told me from date of Surgery-

For what that is worth!!!

Hugs to all--

Debbie L. · 03-03-2011, 09:59 PM

I think we're looking here for hard and fast answers that do not (yet) exist. Previously, the clock ticked from date of surgery. With more and more people doing neoadjuvant treatment, that clock is somewhat blurred (statistically-speaking). But for those who had surgery, then chemo -- it's usually assumed that date-of surgery is the date that is used.

As for peak of recurrence, it's not just about HER2 status, but also about ERPR status. As the subgroup analyses for the adjuvant Herceptin trials report in, we'll know more about this.

Most of what we see, so far, regarding recurrence peaks for HER2+ cancers are about those not treated with Herceptin. That's how science works -- by the time we get the results that apply to our details of diagnosis -- those are OLD results and treatment has moved on (improved). Both the good news (treatmment improvements) and the bad news (no information that directly applies to us at diagnosis).

Debbie Laxague, recovering control freak

NanaJoni · 03-04-2011, 07:11 AM

On the definition of being a "cancer survivor" - I was at our local Am. Cancer Society office getting a free wig. The staff person called me a survivor and I said I wasn't because I hadn't even started treatment yet. She said "the day you decide to fight, you are a survivor". I thought that was great.

1rarebird · 03-04-2011, 12:47 PM

I read that the American Cancer Society uses the date of of initial cancer diagnosis to start the survivor-clock. But then they are looking at all kinds of cancers, some of which obviously never are candidates for surgery. For many breast cancer survivors their diagnosis and first surgery are often so close together that the preciseness of the start date becomes less meaningful as time progresses.

The start date I am interested at present is the time-to-port-is-out-date. Does it start after the last Chemo or Herceptin infusion? My doc says "the port needs to stay in for two years." I plan to ask him next visit, "two years from when?"--bird

Jackie07 · 03-04-2011, 12:56 PM

1rarebird,

I was told that the port is to be kept for 1 year after completing treatment. I've been keeping mine as I have very limited veins for IV.

NanaJoni · 03-04-2011, 01:35 PM

Found out at my last dr. appt/Herceptin day, my port will be coming out after my last treatment in May. First a PET scan for baseline and then port OUT. I can't wait. I have awful veins and a genetic clotting problem but my oncologist says it will be better for me to have it out. I'm on warfarin so that will stop for a couple of days prior to the removal. And I really am happy to have that info.

Jackie07 · 03-04-2011, 01:57 PM

Well, we're off topic. But here's a link to other cancer survivors opinion on the port-out day:

http://csn.cancer.org/node/205574

The 'survivor' date really should be the confirmed diagnosis date. I think the only reason why surgery date is used is becaue that's the date we usually remember very well. Also, since surgery carries risk, people have a more 'real' sort of feeling when they 'survived' the surgery.

But I remember clearly of the diagnosis date of my life-long brain tumor, it happened to be my husband's birthday and it had led to the first major surgery of my life. After that one, none of the other cancer diagnoses was that big a deal and I only remember the surgery dates.

Lani · 03-04-2011, 02:05 PM

distal recurrence free survival, overall survival etc are all calculated as time since original surgery

Interestingly, in breast cancer the clock starts ticking not when a tumor is found but when the surgery occurs. In some cases (patient denial, lack of access to medical care.etc) a person with a breast tumor may go for months or years before having the surgery. The peaks of recurrence for the various subtypes of bc
all occur a apecific amount of time after the surgery, not a specific amount of time after the mass was discovered/palpable/imagable etc.

This is felt to probably be because the surgery itself causes the release of various angiogenic factors "starting the clock ticking"

CoolBreeze · 03-04-2011, 06:17 PM

I'm not interested in the word "survivor." I don't relate to it and I don't like it. I find it trite. I know lots of people like it and that's fine for them, I have no problems with people calling themselves that. I dislike it for me, same as that whole pink culture thing. It's not my style.

So, my question has to do with when the statistical risk of recurrence drops. From which incident do they count? As you can see in this thread (and I read the one on BCO too) everybody has a different answer. If there is no standard answer, then that five year statistic is inaccurate. Or, let me rephrase that. It's accurate only for the one study where it was introduced, and now everybody has picked up on the five year safety zone.

So, it is like the false "1 in 8" claim.

As for a book, that is a nice idea! A few people have asked me that but I don't know how I would lay it out. It seems so blogish to me. Would I have to go back and rewrite it like a memoir? That's a daunting thought.

There are so many breast cancer books out there too....I don't know. but, thank you!

Lani, somehow I skipped your post. That's what I wanted to know but do you have a citation or something for it?

Lani · 03-04-2011, 10:56 PM

I remember posting about surgery starting the clock ticking around 2005 or 2006

I will try using the search function to see if I can find it.

Lani · 03-04-2011, 11:30 PM

this is not the one I was looking for, but another related one ...looking at women in China, Vietnam where they didn't necessarily get treated right away in fact it compares those treated 1-6 months after they felt the lump and those treated 6-29 months later and found disease-free survival and overall survival were not statistically different between those two ie, the clock started ticking when the surgery occured

Breast Cancer Res Treat. 2004 Jul;86(2):117-24.
Duration of signs and survival in premenopausal women with breast cancer.
Love RR, Duc NB, Baumann LC, Anh PT, To TV, Qian Z, Havighurst TC.

Department of Medicine, Section of Medical Oncology, University of Wisconsin School of Medicine, Madison, WI, USA. rrlove@facstaff.wisc.edu
Abstract
CONDENSED: Among 550 women reporting a lump as the first sign of breast cancer, those with this sign for 6-29 months compared to those with 1-6 months, had bigger tumors and more frequent axillary node involvement. Overall survival, however, was not significantly different in these two groups.

BACKGROUND: The relationship of delay in diagnosis of breast cancer to survival is uncertain.

METHODS: We evaluated the relationship of patient-reported duration of signs of breast cancer to survival in participants in a clinical trial of adjuvant hormonal therapy in Vietnam and China.

RESULTS: Among 550 women reporting a lump as the first sign of breast cancer and information on when this appeared, the median duration of this sign before diagnosis was 6 months. Comparing two groups of patients with durations of lumps 1-6 months and 6-29 months, the group with longer duration of lumps had larger tumors clinically and pathologically (p = 0.0006, and p = 0.004), more frequent axillary node involvement (p = 0.008), and shorter but not statistically different disease-free and overall survival from the time of diagnosis (p = 0.09 and 0.35, respectively).

CONCLUSIONS: Breast cancer evolves slowly in the detectable period of its natural history. The impact of delays in diagnosis of less than 6 months is likely to be very limited; delays more than 6 months appear to have some, but marginal impact on survival.

Copyright 2004 Kluwer Academic Publishers
PMID: 15319564