Your Cancerversary: How do you figure it?

MRDRN

Hey Barb,

No problem sweetie. Did I use the word "cure"?  I didn't mean to if I did but when i was diagnosed, I remember calling the ACS and they said stage 1 has a 100% cure rate...cure being defined as living five years after removal.  I had a bi lat to decrease that recurrance rate.  

I guess you know more than me being around here longer.  I appreciate your anectdotal experience but I wonder if you know of any studies that have published this about us "flipping over quicker"?...although I have to agree that I too seem to see a lot of ladies who go from Stage 1 and then have mets to bone which automatically put them into stage 4. (  This is depressing but I really think it is about living, not dieing.  There are so many factors to consider.  I am up with so much pain now EVERY night and fear that worse. My nuclear bone scan ruled out bone mets?  I religiously go to Docs and question.  I have not been told that "five years means nothing with ER pos"....but I will ask next time I see the onc!   One thing I WILL say is that ANY excuse for a celebration is a GOOOD THING!   )))))     This disease does suck, that I know for sure.  

Cheers!

barbe1958

MRDRN, no need to apologize, and you should call and correct the ACS!!! They are WRONG!!! I am in Canada, or I'd do it for you.

I'm not saying I know more than you, just maybe different than you....was that diplomatic enough?

Since I've been on, two women who started out with DCIS have advanced to stage iv and died. Riverinerabbit was one and I'm darned if I can remember the other.

Stage I and II's don't tend to be treated as aggressively as stage III, so there is this phenomenon of lower stages advancing more often than the girls who got everything included thrown at them. As you well know nodal involvement has nothing to do with chance of recurrence!!! Even when I had surgery it was standard of care to get SNB and further nodes removed if positive, and now they're wondering if it's worth the risk of LE to take ANY. So I've seen changes in my short time.

MRDRN

Well it's funny because what was emphasized to me was ....0 nodes =no rads, 3 nodes=rads, without mx or possible with mx.... no mention of chem since ER pos I had clear margins with the bx and thankful that nothing  else came up 

 So I guess you are just going by one person on here?  I guess in 90 thousand or so that is not statistically significant but ok.

EnglishMajor

pure dcis would not lead to metastatic disease - the problem is that a pathologist can never look at every portion of a biopsy specimen and there may be a focus of invasive cancer which was not seen- an invasive component could lead to metastatic disease - patients with DCIS are usually assured the the risk is very very small- and that it would not be the dcis which caused the problem but rather some element of invasive cancer

EnglishMajor

 From the American Cancer Society 2009-2010 stats publication:

http://www.cancer.org/acs/groups/content/@nho/documents/document/f861009final90809pdf.pdf 

Stage at diagnosis
Five-year relative survival is lower among women with
a more advanced stage at diagnosis (Figure 7). Considering
all races, 5-year relative survival is 98% for
localized disease, 84% for regional disease, and 23% for
distant-stage disease.3 Larger tumor size at diagnosis is
also associated with decreased survival. For example,
among women of all races with regional disease, the
5-year relative survival is 95% for tumors less than or
equal to 2.0 cm, 82% for tumors 2.1-5.0 cm, and 66% for
tumors greater than 5.0 cm.

Age at diagnosis
The 5-year relative survival rate is slightly lower among
women diagnosed with breast cancer before age 40
(83%) compared to women diagnosed at ages 40 or
older (90%). This may be due to tumors diagnosed at
younger ages being more aggressive and less responsive
to treatment.23, 24

Race/ethnicity and socioeconomic factors
African American women with breast cancer are less
likely than white women to survive 5 years: 78% vs.
90%, respectively.3 This difference can be attributed to
both later stage at detection and poorer stage-specific
survival (Figure 7).
Table 3 (page 10) presents 5-year cause-specific breast
cancer survival rates by race and ethnicity. Cause-specific
survival rates are used instead of relative survival
because estimates of normal life expectancy are not
available for most racial groups. Cause-specific survival
is the probability of not dying of breast cancer within 5
years of diagnosis. African American women have the
lowest cause-specific survival rate of any racial or ethnic
group, indicating that they have the greatest probability
of dying of breast cancer.
A lack of health insurance is associated with lower survival
among breast cancer patients.25 Moreover, breast
cancer patients from lower-income areas have lower
5-year relative survival rates than those from higherincome
areas at every stage of diagnosis.26 The presence
of additional illnesses, unequal access to medical care,
and disparities in treatment may contribute to the
observed differences in survival between patients living
in lower- vs. higher-income areas and between African
American and white women.27-32 Aggressive tumor characteristics
associated with poorer prognosis appear to
be more common in African American women and may
also contribute to lower survival rates.33, 3

barbe1958

MRDRN, not sure what you're referring to...sorry!

You didn't get chemo because it doesn't help with ER+ breast cancer. The ER+ cancer grows too slowly....

Major, you have to pull up the bit about the hormone receptors.

barbe1958

Maybe you meant about a recurrence and nodes??? I said recurrence, not chemo or rads. Having negative nodes does NOT mean you'll never get a recurrence. That is what I was trying to say.

barbe1958

English, I just skimmed quickly through that link, very concise and easy to read!! I did notice that it makes NO reference to hormonal receptors!! So there is no conern anymore about being triple negative? Did Herceptin wipe out that fear for those diagnosed with that aggressive combo?

Blinx

Chiming in about how the news was received... I had my biopsy on a Tuesday, the week the surgeon was on vacation. It irked me that the 5 or so people at my biopsy would know the results way before I did, since they wanted the surgeon to give me the results when he returned that Monday. I said no way! So the breast cancer coordinator called me that Friday with the results, under strict orders not to let the surgeon (who is he, God?) know that I knew. Sheesh! At least I didn't have to wait over the weekend. So that all happened 4 years ago this week or so.

The surgeon called me at work. I think they asked me my preference -- I just wanted the news whatever was the fastest way.

firebird

FWIW, I always prefer to get "bad news" (medical or otherwise) over the phone. I deal with such things much better in complete privacy so that I can give free rein to whatever my immediate reaction is. I don't want the pressure of having to 'act brave' , which I would feel in the presence of ANYONE at all, no matter who it might be. When I am under severe stress my reaction is "go away and leave me alone to deal with this in my own way!" -- which is not to say that I don't "reach out", I do but not until I have gotten past that first stage which can vary in time depending on what the news is.



I always insist that test results be given to me over the phone and will not agree to wait for a face to face appointment. I tell the doctor's office "I am NOT going to risk my life or those of other people by being behind the wheel of a car for a half hour, totally distracted by a brain-fog of panic. Nor do I have or want anyone to drive or come with me. It is much safer and easier all around for the doctor to tell me over the phone in the privacy of my own home." Then after I've heard the basics, I get a copy of the report so that I can read, analyze, and research it on my own BEFORE sitting down to talk with any doctors.



I think too many patients (of whatever kind) forget that they, not the doctors, have the final say in ALL aspects of their care. If any doctor were to say to me "I refuse to give you this information over the phone" my response would contain the word "lawyer". In my state at least, the patient is legally entitled to a copy of all medical records and results upon request. A doctor cannot refuse or put any conditions upon the furnishing of that info other than to say (if the MD wishes) that the request be made in writing. The doctor can't require the patient to do anything else in order to obtain the information.



btw, barbe, I agree with you. I was HER2+ and that is actually a relief to me, because statistically when I get to the 8-year mark my chances of having a recurrence will be no different from someone who has never had BC. I'd much rather have that scenario than having the odds of recurrence keep increasing with every passing year.

MRDRN

Thanks Barb and English.  I wish I knew my Her 2 but I heard it was not done...too small maybe?  I was surprised because usually the BRCA 1 folks do have triple neg. That is why I had the Bilateral upon knowing the biopsy...I skipped the lumpectomy and went straight to the bi lat mx. to cut my recurrance (80 some to less than 10 percent).  I had no education specific to the ER status except that the hormone treatment was deferred since is would only prevent recurrence by 2 percent since I had just had a hyster and that was treatment enough.  I have been so worried about my bone pain and the "flipping to stage 4"...really shocked me but yes, I am reading and reading and see what you mean but 

 FWIW, "5-year relative survival is 98% for
localized disease,"...this is what I basically said  and it gave me comfort via the ACS.  Sorry if that did not come across ....

Hey Blinx that is good the Coordinator called you.  Yes, they do think they're  God sometimes

Firebird I like the way you think.  You need to be your own best advocate!  I begged to get a baseline MRI as my sister was getting one every six months, alternating with mammo for her BRCA gene.  I now keep meticulous records and don't hesitate to pick up every scan report or lab BEFORE i get in to see the Health Care Provider on the next visit.

barbe1958

MRDRN, the only time they don't do HER2 is when it is pure DCIS and there isn't that receptor. So, somewhere in all your paperwork is your receptor. IF you got a recurrence though, it would be re-tested to see if the receptors have changed, which they often do, so it's not a dire thing to know unless you were ER/PR- in which case, HER2- would make you triple negative which does make a difference. Even though the ACS doesn't seem to think so!

MRDRN

Barb they only had a 5mm biopsy ...I think only one slide. I had two different hospital pathologist 's look at it. No other cancer found after the bi mx. It was both invasive lobular and ductal . I never had the receptor done .