Stage and Grade?

Just called my doctor to ask for the stage and grade so I can get some peace of mind.  I feel he is SOOOO matter-of-fact.  I don't want to be oversensitive and I typically a very strong type woman, but this is upsetting.

He told me to come in with all my questions and we would talk.  I feel bad to even ask questions...that's how he makes me feel!  UGH!  This is why I'm going to see a hepatologist very soon!

[GrandOak]

Please do not be worried about what your doc thinks. Often times you need to be your own advocate.  Personally my first doctor, while a infectious disease specialist, clearly did not know what she was doing with respect to handling my HCV.  My first clue was when she was surprised at how high my viral load was and became defensive as did more research and asked more detailed questions.

I only wish I had known about our local support group and searched more for internet support groups such as this prior to consenting to enter into treatment.  I might have spared myself the agony of having my RBN cut in half 1 month into treatment and spending the last 3 months trying to restore my CBC to the point that I can return to the original full regimen.

Often times, but not always as my primary care doctor is an example of, doctors do not always have the patients best interest at heart.  Keeping in mind that they often are pressured by HMO's, their clinic, etc. to keep costs to a minimal.  I have found it rare these days to find one who says the heck with that and orders tests, makes referals, prescribes medications, etc. with the patients best interest at the fore front.

[GrandOak]

Upon reading your other posting, I agree that you need to know both the stage and grade in order to determine the urgency of beginning tx.

For myself, a Genotype 1B, Grade 1, Stage 4, with a 72,000,000 load, the choice seemed quite clear to me given what little I knew at the time (6 months ago).  If I had known then what I know now I would have still proceeded with tx, but would have definitely found a very qualified doc before hand that was prepared to deal with extenuating circumstances.

[nationsgirl]

I think it is important to have a good doctor.  Mine makes me feel like I ask too many questions and is just a stress in my life.  I am generally so easy going and don't care much that people aren't a "certain" way.

Dr. told me I was in excess of 5 mil and that the chart didn't show more than that, yet you say 72 mil.  Oh well...

How has your treatment been going?

[NYgirl]

The doctor works for YOU. You have to remember that. There is NO NEED for you to go in to the office to get this information - he is just trying to get more cash.

HOnestly - call him back and ask him to reread your results and then have his nurse call you and let you know.

DO NOT GO IN TO ASK THIS - THIS IS GARBAGE!

Oh I am mad - I HATE when doctors take advantage of their patients!!!!!!!!   You know NG that my doctor CALLED ME when my UND result came in to tell me personally he was so happy about it - THAT is the kind of doctor I want!

Most of the time I just talk to the nursing staff because I don't need him but if I ever called and needed him he would take the time to look at the results and tell me he'd call me later.

You call the Nurse Practitionner or someone right back and just say please fax me over a hard copy of my biopsy results along with a grade and stage diagnosis and have them FAX the copies of all of your paperwork.

I get EVERY SINGLE piece of paper for myself.  You just have to!

GRRRRR I am LIVID!

NO REASON AT ALL YOU HAVE TO GO IN, NONE!!!!!!!!!!!!

CALL BACK! TELL THE NURSE YOU AT LEAST WANT THE DIAGNOSIS PLEASE HAVE HIM CALL YOU WITH IT.

THIS IS NUTS.

[FlGuy]

'...given what little I knew at the time (6 months ago). If I had known then what I know now I would ...'  A familiar refrain heard here all too often.  There is no better offense against this disease than an educated patient. Sadly, by the time we realize that...

[sfbaygirl]

Welcome to our forum! You are in the right place to get some good information, suggestions and support here with these great people.

A lot of the info you get will seem overwhelming and scary, especially at first. Then you start tx and all the worries about that happen. It is a process and sometimes not easy to be patient with the process. I know I sure wasn't!

Afterwhile, you will start to understand the test results and terms we use. You are in the right place. Did your Dr. say when you could start tx? The waiting can be NOT fun. I am glad you are changing doctors.

One thing I wanted to mention to you, not critizing you at all, is that we only get 6 or 8 threads per day. I didn't know this at first, so I posted a lot of threads. What we do here is jump in on each others threads, that PERHAPS sound similar, or we hijack each other that day or use a thread we started already. The forum says there is a 2 thread limit for six months, but I don't know many who go by that (I already used mine the first week LOL).

Anyway if you add to your orginial thread, or put the person's name you want to talk to in the comment to line, usually the person will see it and respond. Sometimes people will put a topic in the comment to line to get some comments to a quick question.

Good Luck. Keep posting! Glad you found us!

Linda

Linda

[Pdilly]

Call up the office and tell them you are comming in for a copy of the report.  You paid for it, it is yours.

[NYgirl]

Ditto what FLGuy said...so many of us feel that way.  But at least we made it in here eventually and are doing our best NOW.

I am still so mad at that doctor I can't type almost.  Nationsgirl remember YOU hired HIM - and you can fire him too.

You NEED those results.  You do not need to go in to get them.

[jmjm530]

I answered some of your questions in your other post today (below)
"Got liver biopsy results".

This site is difficult to navigate but you don't have to open  a new thread each time you have a question, especially when you do it on the same day on a similar topic. Much better to use the "post comment" button you see at the bottom of the page. In other words, you would post a new question in the same thread. What you are doing is using the "post a question" button at the top of the main page. Makes things more confusing and uses up valuable threads. Lots of people make that mistake in the beginning.

[GrandOak]

Fortunately I have a primary care provider who is not afraid to buck the system and is willing to provide what ever results I needed, when I asked for them.  Also, my current specialist is also very good about providing me lab results and "consulting" with me on tx options.

I've also been fortunate to have web based access to my lab results from my primary provider and their lab when I have the vampires hit me there between my specialist follow-ups.  So I've been able to keep on top of my care quite closely.  I think that is what may have made my initial specialist uncomfortable in that I seemed to know more about my condition and tx options than she did.  It is also probably why she wanted to "through in the towel" (to quote her) when my HGB dived below 10 and I began asking about tx options to combat the anemia.

I'm now connected with a very good, active, and vocal support group called LiverHope which has very knowledgeable people that have been active both locally, nationally, and internationally with HCV awareness for both patients AND docs.

[sfbaygirl]

A thread is when you hit the "Post a Question" button when you see all the questions. A thread are the answers and other stuff lol we post that relates to it.

[amirtracy]

Totally agree w/ nygirl. There is NO reason why they can't tell you over the phone your stage/grade. I'd call and demand it.

[painterlady13]

I am going thru a similar thing here My PCP has control issues by not referring me to the local hepatologist and sending me 4 hrs away to a specialist and then saying he (my PCP) will manage my treatment only referring to Specialist if needed.  Needless to say I am in the process of changing PCP's and will look in to getting an appt with local hep Dr.  this is the same dr who says I don't need surgery before starting treatment when liver specialist, gyn and gyn specialist all say I do.