helping to understand diagnosis

[NED Rocks]

I would love to see some sort of "report card" from the pathology report/scans/blood tests/... for diagnosis and treatment.  In this day of age we are all on the computer comparing notes; but we don't know what we're comparing!  So a check list of every test, what it means, and medications if positive would be greatly appreciated!  We're all scared, and to hear someone got a double mastectomy, chemo and hysterectomy while someone else with the same diagnosis got a lumpectomy with radiation is very confusing.  We don't see all those genetic tests and such you run that make these determinations for your advice.  I think it would be very comforting for the patient to understand what they have and why they are being treated the way the are.  I participate in several support groups and this is a constant question; I've learned a lot just by looking up what people tell me is in the pathology report!  
A little example of this; when I was diagnosed with stage IV inflammatory breast cancer, HER2+, HR-, bone and liver mets a friend of mine found through another friend to help give me advice because she also had the "scary cancer".  Well her scary cancer was DCIS; she had a double mastectomy, hysterectomy and chemotherapy.  There was no explanation as to why her treatment plan was so aggressive or why she was considering a stage 0 cancer to be "the scary kind" after hearing about what mine was.
Don't get me wrong; any diagnosis is scary; but I think patients need a better understanding of what is going on; and if they're having a more aggressive plan due to genetics they need to understand that; and vice versa.

[japdip]

Due to the fact that each and every case of cancer is different the best place for answers is your Oncologist. He/She is the one who has set up the treatment plan and knows the reason why .... unless a person has been to Medical School; advice and comparisons from pt. to pt. (other than the sharing of experiences) is not the best source for information. Websites of the large Medical Centers as well as the Amer. cancer Society are good sources of general information and explanations of tests, terms, etc.

[Cleveland Clinic]

Dear NED rocks:  As you see the diagnosis of breast cancer is very complex and there are many facets to the disease that need to be sorted through and put into perspective for an individual patient and what it all means for them.  While many situations may be very similar - the treatments may vary as there may be several appropriate ways of treating without one standing out as being superior in all situations.  This is the reason we will often refer persons back to their oncologists to ask the questions as to why a particular treatment was chosen for their situation.  The oncologist with both the information regarding the patient, as well as the knowledge of the range of treatments for this person would be the person best able to clarify the recommendation for the individual.  When a person has concerns or may just desire another opinion, a second opinion is recommended.  Again because the specialist would have much better access to both the individual patient’s complete information and the knowledge of the range of up to date treatments.    

There are websites that give good information about breast cancer and give explanations of various pieces of information, for example the website www.breastcancer.org.  The National Comprehensive Cancer Network (NCCN) (http://www.nccn.org/patients/patient_gls.asp)  also has information available for patients regarding treatment guidelines.   These are guidelines and not treatment plans set in stone, but they do offer information about breast cancer and treatments used for various stages of the disease.  The information may be helpful as a person is making treatment decisions, not in place of but in addition to the advice of their oncologist.