Statistical Calculators

HapB

There are 2 statistical calculators which show the difference between treatment vs. Non treatment.

here is one 

http://www.lifemath.net/cancer/breastcancer/outcome/index.php

The other is from the UK, and I am not sure the treatments are the same in the USA, but it has a drop down menu which allows you to select the treatment after you fill in the characteristics of the BC and age. 

http://www.predict.nhs.uk/predict_v2.0.html

 So, on the Lifemath, the statistics that they provide for my own BC type and age is: 

There is a 14.7 %    15 year cancer death. That is about 85% 15 year survival rate. It says" this cancer shortens the life expectancy of a 65 yr. old woman by 2.2 years, from 19.9 years, to 17.7 years.

For the UK Predict tool here is what it says with my specific information:  It is more specific. They give a bar graph, which doesn't paste here.

PREDICT Tool Version 2.0: Breast Cancer Survival; Results

Five year survival
91 out of 100 women are alive at 5 years with no adjuvant therapy after surgery 
An extra 1 out of 100 women treated are alive because of hormone therapy 
An extra 2 out of 100 women treated are alive because of hormone therapy & chemotherapy 
An extra 3 out of 100 women treated are alive because of hormone therapy, chemotherapy & Trastuzumab 
Ten year survival
78 out of 100 women are alive at 10 years with no adjuvant therapy after surgery 
An extra 3 out of 100 women treated are alive because of hormone therapy 
An extra 5 out of 100 women treated are alive because of hormone therapy & chemotherapy 
An extra 6 out of 100 women treated are alive because of hormone therapy, chemotherapy & Trastuzumab

 

Year	Survival with no Adjuvant treatment	Benefit of Adjuvant Hormone therapy	Additional benefit of Adjuvant Chemotherapy	Additional benefit of Trastuzumab
Five years	91.2	1.3	0.6	0.7
Ten years	77.7	3	1.5	1.6

 

 

 

HapB

Anyone else ask these questions?

I am just wondering whether it is unusual for a BC patient to want to do a risk benefit analyis?  Where the risk of recurrence is lowest, the benefits may outweigh the toxicity. It feels like not many people look at it this way? 

tufi000

How would you feel?

Suppose you find reliable statiscal sources on which to weight your treatment decisions and later find that the stats were wrong regarding your case?

tufi000

And you know

That "research" done for FDA approval is big pharma funded and not always reliable so we get horrors coming down the line maybe years later. I know first hand that any scientist will tell you to challenge the apparent facts. It isn't a know all situation regardless of statistics. The science may offer you personal comfort, but the reality is...if you have confidence in your docs, they will answer your questions and consider the science availalbe to make their decisions.

There is a huge annual BC national conference shindig in Texas every year where all of the best in the field hammer out the science, irregularities, conclusions, directions needing more investigation, etc.  I have a close family member that goes and what he says is mind boggling and all of it too complicated to show up on the internet or the "somewhere" you are looking for.

You aren't a blank hard drive, you are a person. Try not to forget that

Apaugh

HapB said:

Anyone else ask these questions?

I am just wondering whether it is unusual for a BC patient to want to do a risk benefit analyis?  Where the risk of recurrence is lowest, the benefits may outweigh the toxicity. It feels like not many people look at it this way? 

Stats

I looked at the stats.  I weighed the quality of life after.  I thought of all the times I have taken care of cancer patients and watch some survive and others die.  I looked at my kids and my grands and thought, no matter what, I am going to try everything they got for me to do. 

It all boils down to personal choice.  No one and nothing will ever give you a promise of a cure.  They cant.  Like Sherry reminds us.  We are individuals and that factors into it.   I wish you the best and hope you find your peace.

Hugs,

Annie

tufi000

Travel Well

This journey will take you on paths you cannot anticipate. I wish you the best

HapB

Tufi

I know. I have been fighting cancer for 7 years now. This is cancer #3. 

meschellejensen

HapB

Thank you for the statistical models above! They are helpful when debating treatment options, and my doctors did not lay things out in this way at home (that is why I am being treated out of state!) 

HapB

Mesch

I am getting my treatment out of state too, because the hospitals where I live are substandard according to all measures, including outcomes! It matters. I am glad that you got to a good place. Have you been able to sightsee in Phoenix at all?  I hope your pain subsides quickly!   Did you get a chance to look at the numbers that I posted for my particular situation?   The improvement in my chances just doesn't seem to outweigh the risks to a woman my age. I would be interested in what you think because I was a stage 1a too, but triple positive. 

peony

I had a neice who died from

I had a neice who died from cancer that started in her lungs and spread to her stomach. She died 6 months after her diagnosis; 3 years before I received mine.  She was 4 years younger than me. I'm positive her loss influenced my decisions.  I read statistics and weighed the pros and cons and decided that I wanted to survive.  I was going to do anything and everything I thought would help me survive.  Do I regret any treatment I've chosen? Not one bit because I'm here to tell the tale.  If I ever have a reoccurance, it will be because God wanted me on that road, not because I didn't put up a good fight. And if or when it ever happens, I'll be fighting to the utmost again, for myself and for my neice, who was blindsided by a sucker punch. I never really gave great weight to alternative treatments. I wanted the best that modern medicine had to offer and there was no way I was going turn any of it down. Your doctor is right, HapB, it is your choice. You have to do what you feel is going to be best for you in the long run. Best wishes. 

HapB

tufi000 said:

And you know

That "research" done for FDA approval is big pharma funded and not always reliable so we get horrors coming down the line maybe years later. I know first hand that any scientist will tell you to challenge the apparent facts. It isn't a know all situation regardless of statistics. The science may offer you personal comfort, but the reality is...if you have confidence in your docs, they will answer your questions and consider the science availalbe to make their decisions.

There is a huge annual BC national conference shindig in Texas every year where all of the best in the field hammer out the science, irregularities, conclusions, directions needing more investigation, etc.  I have a close family member that goes and what he says is mind boggling and all of it too complicated to show up on the internet or the "somewhere" you are looking for.

You aren't a blank hard drive, you are a person. Try not to forget that

Chemo....

I have read the studies that are published in Medical Journals. and the Reviews. I go to an excellent hospital. My doctor laid out 3 options, because there is just no clear answer in the data for people with small node free Her2 tumors for woman my age. It just isn't clear cut and she made it clear it is my decision. There is a low rate of recurrence without treatment and not much improvement with it. That is the dilemma. The only question is whether to add taxol to herceptin and radiation , then 5 yrs of aromatase inhibitor.  No evidence that it will improve my chances of RFS.

HapB

Peony

That is exactly the way I felt the first time I fought cancer because the choice was clear cut and the chemo treatments were shown to work. That is not the case for me this time, where with my specific tumor characteristics and age the chemo portion of treatment have shown to benefit only 1 out of every 100 women treated, and the risks are substantial. Big difference this time around.  We all have cancer stories. I have a friend who had stage 1 cancer and died from the treatments ...leukemia. The benefits have to outweigh the risks. 

meschellejensen

HapB,

It really does have to be an individual decision, but that said, I would tell your MO that you want genetic testing done before you decide.  My profile says right on it that I would not benifit from chemo based on the tumor pathology.  It also provides my chance of recurrance in five years (5%) and in ten years (10%)  Those statistics are what is driving my decision making.  I can tell you that based on my profile, a 2.5% benifit does not seem worth the side effects associated with Tomox to me (especially when you factor in the 1% increase in risk for uterine cancer).  Maybe an AI makes sense after I go through menopause?

Interestingly, when I entered my information into your statistical calculator, I came up with close to the same numbers as I received with my genetic testing.

HapB

Mesch

It is after midnight here and I am still reading. The issue is that with BC with low probablity of recurrence, the potential benefit of chemo is limited. As you can see, my numbers above are low, and due to my age, the risks are higher. The benefits are pretty much psychological to give peace of mind that one has done all that can be done by traditional medicine. Ironically, many patients never change their diets or lifestyle risks, but want the maximum amount of medical interventions. My reading continues. I am going to call the doctor tomorrow. She has made it clear that there is no clear cut answer and I have options. If I were not Her2+ , chemo would be out of the question. I did just read the updated NCCN guidelines for treatment, and it did say chemo should be considered. I also read a study that said with small, stage 1a Her2+ BC's  the chemo showed good results for 3 year recurrence free survival, but it would have been almost just as good without the treatment. So, the other big factor is my beautiful daughter, who desperately wants me to do the chemo no matter what because she wants the peace of mind to know I have done all I can do.  I would walk across hot coals for her and because she has been through my treatments before, this is now weighing heavily on me. It just might be the deciding factor now.  

meschellejensen

HapB

I can understand your dilemma regarding your treatment options.  I am struggling with Tomox in the same way (and I realize that Tomox is not nearly as tough as chemo!)  Is your daughter old enough to talk with you about treatment options, or even go to your doctor's appointments with you?  I was fortunate that my husband could go with me to all of my appointments to talk through decisions with me. 

 I agree with you completely about the diet and lifestyle changes.  Here at CTCA they gave me nutritional guidence, and advice regarding vitamin supplements. I am following all of this advice, the next thing to tackle is stress.  I have already lost five pounds in a month with the new diet/exercise program.  I am thankful to be receiving treatment here, but I really wish that I could be home!

 

HapB

Mesch

Hi! I heard that CTCA is fantastic for integrating lifestyle changes with treatments, and that is so important. My daughter lives 3 hours away and is 26. She has dealth with all my cancers now for 7 years and she is not doing very well at all with this new diagnosis. I am close to a decision and she is my main concern. She is too young to be alone in this world. 

HapB

Mesch

Hi! I heard that CTCA is fantastic for integrating lifestyle changes with treatments, and that is so important. My daughter lives 3 hours away and is 26. She has dealth with all my cancers now for 7 years and she is not doing very well at all with this new diagnosis. I am close to a decision and she is my main concern. She is too young to be alone in this world. 

meschellejensen

HapB

I agree with you that 26 is too young to be alone in this world!  I will be praying for you as you make your decision.  I am waiting for the day when there is a cure, and we no longer have to make these awful decisions about what we are willing to put our bodies through to kill cancer!

anne_janevret

Statistics matter, but there

Statistics matter, but there are some instances where you would be an outlier. It really depends on what you and your family will decide on after knowing you have cancer.

HapB

anne_janevret said:

Statistics matter, but there

Statistics matter, but there are some instances where you would be an outlier. It really depends on what you and your family will decide on after knowing you have cancer.

Statistics

Yes, of course. But if you don't use rates of efficacy, how do you decide? I know some people just put their entire trust in whatever a doctor tells them, but if I had done that, I would be dead right now as I was misdiagnosed by several doctors 7 years ago when I had another cancer 

HapB

Stats

Medicine is based on science, which includes measuring the efficacy of any treatment.  That is how treatments get approved and that is how patients and doctors make decisions about which treatment is best. The problem with BC patients whose tumors are small and no spread to the nodes is that many studies did not include these patients because success is so hard to measure when the probablitiy rate of recurrence is so low to begin with. That is the situation that I am in. 

The statistics cannot be wrong, they are what they are and they are reported publically in order to gaIn FDA status and in order to become the standard of care.  The results per individual are not knowable, so we have to go by the general statistics. That is how doctors make their decisions,and that is how patients assess the risks vs. The benefits. For me, it is a really tough call. For some, it is a no brainer.  For my last cancer, there was no question and no option other than a slow and painful death. That is not the case for me this time.