Why was I kept in the dark?

Bbryce

On Dec 4th 2015 I had my first mastectomy.  I was told very little really.  They told me I had the largest tumor they had ever seen and how oh so lucky I was. Yeah... really???) To this very day, I still have not been told what kind of breast cancer I had/have.  Every other person I have ever talked to, they have known what kind of cancer they have.  
Why am I not told to this day what kind of breast cancer I had??

Bbryce

Here I am in January 2019 - and I still have absolutely no clue what kind of cancer I have/had.  Since that first mastectomy, I have had test after test after test and I am no nearer to knowing what kind of cancer I had/have.  In 2019 I have huge problems with both my feet and legs with numbness.  I have had huge problems with side effects from the chemo. I am sick to death of my oncologist just basically patting me on the head. 
What do I do???
 

Zoffiel

Sack them and get a new one. Start from scratch and ask all the questions you need to. If you are paying them, that will get their attention.

I don't know where you live Barb, but it can be challenging to find a new specialist. Please believe me, it is worth the effort. Being treated like a child is not good enough, you may not have been particularly engaged when you were diagnosed (ostrich syndrome is common) but that doesn't mean you can't regroup and get the information you want. Mxx

Blossom1961

Hi Barb, Tell the Oncologist you want a copy of all your reports. They have to give them to you. Some hospitals make you fill in paperwork for it but they still have to give it to you. If you then don’t understand them (I know I didn’t) then jump on here and ask all the questions you want. Believe me, the people on this forum are fantastic.

Kiwi Angel

That’s terrible @Bbryce. Knowledge is power and it make us feel more in control to be able to be informed of our diagnosis. I agree with @Zoffiel - sack them all!!

Jane_Elizabeth

@Blossom1961 is right. Always ask for a copy of your pathology results when you are with the doctor, and then keep it for your own records, even if you don't understand them at the time. However any doctor worth their salt won't hand you a copy without discussing them with you. I have kept all mine in a file for myself, and still even three years after diagnosis I still go back to them, especially if I see someone on the forum discussing their results. Of course you can always request your results personally but it might mean  going through freedom of information which involves time and cost, which you won't have if your doctor requests them on your behalf. Your doctor can also request a discharge summary related to any hospital admissions you may have had. It is not too late to ask for your results, they will still be on file.

Blossom1961

All of my results etc get sent to my GP as well as to the specialist that requested them. My GP then prints them out for me. She says the doctors would use different words if they knew I was going to see the reports but that wasn’t her problem as I had the right to them. The first doctor who performed a biopsy without anaesthetic to that area stated that the patient was uncomfortable with the procedure. Wow, really?

Afraser

Not good. You need to ask your current oncologist for all your paperwork, test results etc. They are yours. No need to be to charming - give him/her a date for provision of same or advise you will seek legal advice. A threat costs you very little! Once you get them, the next step is to find a new specialist who is a lot better aligned to your well being and being informed. As @zoffiel says, that may not be easy but worthwhile. Your side effects may have occurred in any event - I have terrific medicos and still have Taxol induced damage in my feet - but I was always informed, able to discuss options and have some sense of control. Without that, it's easy to feel that you have been handled rather than treated. Best wishes.

arpie

@Bbryce - there should be a paper trail that should be relatively easy for your GP to track back re your diagnosis thru pathology reports, even if they weren't your GP during your surgery & subsequent treatment.

I ask for copies of EVERYTHING - and keep it in a big box along with all my X-rays, scans, reports, bloods etc...... 

I hope you are able to find all the reports that you need to be comfortable with your previous treatment & what is to come.   Take care xx

Sister

Absolutely disgraceful.  If you feel uncomfortable demanding them from your onc, ask your GP to do it for you.  Are you still seeing your surgeon - I would have thought some of that info would have come from him/her.  You are under no obligation to keep seeing the same team although I understand it can be difficult to change, particularly if the options are limited.  Perhaps if you include where you live on your profile ( keep it general - city or area) someone may be able to pm a clinic/doctor they have been happy with.

Brenda5

Nowadays the scans etc seem to be displayed in computer systems hidden behind passwords for doctors only however there is no reason the GP can't print off for you the special reports on them.

Shellshocked2018_

I have my GP print of all my reports and any letters that the specialists send her.
Good Luck