Oncs - mortality rate not recurrence rate

[bjj]

Hi

I saw two different oncs last week regarding my differing HER2 results (one definitely positive and one definitely negative). I am working on the assumption that I am positive (whilst they try and clarify) because I think false negatives are much more common than false positives.

Trying to cut a long story short....

I had WLE (lumpectomy) in Jan, my tumour was 16mm, ER+, negative lymph nodes. I was advised not have chemo but just radiotherapy. Seems that having Hercpetin in the UK without having chemo is not possible, also too late for me now to have chemo. My oncs both waffled on about stats (adjuvant online) and said that my mortality rate was still good. One onc had been told by person responsible for the program to multiply by 1.5 if HER2 involved. ie if you have a mortality rate of 10% this now becomes 15%. Both oncs were very reluctant to talk about relapse and kept saying that I shouldn't worry (alright for them!). I cornered one at the end of last week and went through my relapse figures as on adjuvant on-line with her. She said that I had to use 1.5 figure again. My chances of getting a recurrence are now somewhere between 27% and 42% (depending on how much tamoxifen acutally benefits if I am HER2+). Personally I do not consider these rates nothing to worry about. My onc (nice lady) explained that oncs tend to work with mortality rates and not recurrence rates. She said that she appreciated that it sounded callous but recurrences can be dealt with and treated! I was quite surprised. I spoke to my sister-in-law who is a radiographer and she said that in her experience this is the case, they're not bothered about it coming back just whether or not you die from it. I don't quite follow this train of thought. I don't want it to come back, I don't want to go through this year again and who is to say that it might come back as a primary and not a secondary.

Anyone else come across this?

bjj

[Unregistered]

Finding access to meaningful statistics is not easy.

I have tried to look at the various efficacy rates of treatment options for various groups including young sufferers by trawling the net. I have emailed various organisations eg American Cancer Society but they only know of the national statisics. This link gives some ideas of the complexities.

http://www.natlbcc.org/bin/index.asp?strid=740&btnid=1&depid=20

This one gives some overall figures.

HTTP://IMAGINIS.COM/BREASTHEALTH/STATISTICS.ASP#5

It is important to bear in mind statisitics are population and not patient orientated, there is always hope.

Genetic tesing is now a reality and I have seen at least two products on the market. This link gives some ideas as to the issues. With increasing sophistication questions are often raised as to the absoulte accuracy of current staging methods, and there is an argument for having a test done, but access to and affordablity are proabably other issues. It appears to be relatiely new technology and has not been adopted mainstream. Overtreatment is also a reported issue, and has to be a magor factor for youger women see below.

http://www.medicalnewstoday.com/newssearch.php?newsid=28842

Younger women are generally reported as being less satisfied with treatment, and clearly fertility and sexuality are big factors in taking treatment decisions.

http://store.yahoo.com/annieappleseedproject/younwomproba.html

http://www.cancerlynx.com/bonedry.html

I will try and find some of the items I have saved and post them. It is a huge subject. Please bear in mind that many of the trials are funded by commercial organisations, with all the implications that has just in terms of human frailty, free lunches, invested time. desire to please, peer pressure, and so regretably there are no absolutes...

RT does work at reducing local and contrlateral reoccurence, primarily. Its impact on distant spread is less clear. Statistics for RT and boost show significant further improvement.

Unfortunately many trials of tamoxifen use no treatment rather than RT as a base point - this includes the large Oxford trial. Those that use RT as a baseline produce less clear results. Tamoxifen has an impact as a preventative according to a recent trail, however it is reported it may even antagonise in some groups (cyclin d).

Here is a link to a very informative site. This small part of a very large site deals with side effects of Tamoxifen.

http://www.nci.nih.gov/cancertopics/pdq/treatment/breast/HealthProfessional/page7#Section_261

For younger women many available chemo statistics show similar results to ablation. Some have questioned the use of chemo, which often causes ablation, if the end point intention is ablation.

http://www.nci.nih.gov/cancertopics/pdq/treatment/breast/HealthProfessional/page7#Section_261

This is a very amateur view point based on hours of trawling, and a very samlpe selection of saved odds and ends.

I am not a sufferer and male - just an interested party.

This is such a complex and fast changing subject. As somebody who I guess feels the need for understanding and answers I can only suggest you search the web and check out NCI, Annieappleseed, Cancerlynx, NCBI etc. I am afraid that your head will still feel like spaggetti but you maybe will have cut out the chances of self what if recrimination, and form your own perceptions in the fog.

Finally the only thing that I have concluded and am certain about is that BALANCING OMEGA THREE AND SIX, combined with good diet - cheap in comparison, accessible and very limited side effects with reported benfits as high as 70% reductions- has to make sense as a starting point whatever else is decided.

More questions than answers I'm afraid.

RB

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[bjj]

Thanks for such an informative reply. I really appreciate you spending the time to get back to me.

Thanks

bjj