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Tuesday, September 08, 2009 marilyn asks

Q: i am questioning as to how the determination is made that I have a stage 1 or a stage 2 .

Reason: without going into a long storywhich is longer than this one..i am getting strong vibes that this is a judgment call and was in my case determined because the  surgeon/oncologist are associated with the 'study' that deals with the Oncotype DX test and are hoping if not going to manipulate that I will fall into the randomized group that will 'get' the chemo in addition to the radiation and the arimidex (I am 69)I have lots of reasons to have these vibes..

 

the head of this study as well as her assistant when familiarizing me with the study..always 'prefaced' the word chemo by saying G-d forbid.huh? and then my surgeon had said: go to this study office because there you will get the results of the Oncotype DX  faster than if you don't say you will be a part of the study so the oncologist will know when you come how to treat you.

 

Meanwhile (and I am only telling u part of the story)..two days before I am to go to the onco. for the appt..and this is 'after' i signed papers and had blood work done agreeing to be in the study..i am called to be asked again..are you sure you will agree to participate to get chemo if you are randomized? I said yes...but went to oncol appt without the results..whereupon she sat with me going thru a brochure and circling what i have etc..and then my husband asked her..if i weren't in that study...how would you treat this..and she says with chemo..WHY? the lymph nodes were clear...only one was removed to see if any cancer cells were there..i had the lymp..it is suppose to be 1 cm..which i also have a question about..from the readings of the path. report..it seems that this measurement could also be a judgment call so "I" would be 'eligible for this study..it has to be at least 1 cm.

 

now again...two days before my appt with the oncol..i get a message on my answering machine asking me again if i am 'sure'.. that i will agree if i fall into the middle group to be randomized and if I will take the chemo if that is what area i am assigned to..huh? why? is the study girl who is the head of communicating with the people..so determined to knock into my head that I should be sure  huh?

 

I am furious about this whole thing..it appears to me that they are all..the surgeon ..the oncol...this study group..all hoping that i will fall into the randomized group and be selected to be the one to have in addition the chemo. I wonder what is in it for them..p.s. nothing is in it for me except to be a good person..it plainly says that the study is for the purpose to determin if the addition of chemo for this group 'STATISTICALLY' may be more beneficial because as of now..they don't know

 

ok just answer me: what determines the stage i am in..especially between stage 1 and stage 2? Can it also be a 'judgment' call? (seems strange that with it not going to the lymph nodes...being 1 cm (which again I feel can be a judgment call) and this and that..estrogen positive which i understand has no bearing upon the stage 1 or stage 2 determination...but all pointing to it being 'good' they came up with Stage 2.....

 

p.s. i feel very strongly i got this from the HRT pills that for years I was told..it is good for you take it..and so do many of those I have spoken to that also have this problem too...

 

.so i have every reason to question/distrust. Marilyn and p.s. now it seems that every 3 worman i speak to ..says..i had this too.

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Answers (1)
PJ Hamel, Health Guide
9/ 8/09 12:13pm

Hi: I take two things from your story.

 

1) You don't trust your oncologist, and many of the medical folks you've spoken to so far. If this is the case - please take the time to get a second opinion. Ask for a referral from your oncologist; s/he should give you one without argument. If not, shake the dust off your feet and find another oncologist on your own, maybe even at another hospital or cancer center.

 

2) Stages are generally not open to interpretation. They're based no specific facts about your diagnosis. Please read the stage section of our Guide to Understanding your Pathology Report, which you'll find here.

 

Hope this helps - good luck, and do take your time to decide on a treatment plan that

's right for YOU, not for your medical team. PJH

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By marilyn— Last Modified: 12/26/10, First Published: 09/08/09