blood transfusions, platelets, and other confusing things

[MuddyGal]

I'm 27, no children, no cancer in my family (that I know of)

so the things I know : I have a large (size of a loaf of bread) cyst most likely on my left ovary. I'm anemic and getting worse (hemocrit  supposed to be 11-15 and mine was 7.9 first test, on iron 3 times a day and still down to 7 second test week and a half later)\
Also my platelet level is high, supposed to be 140 -440 and was 873 and is now 999. My CA -125 was 204 didn't get what it was on the latest round of tests (forgot to ask, cant remember much these days). I am having surgery on Sept. 11 to remove the cyst, and do a biopsy. I meet with the oncologist/ gyn and hospital for my pre-op on the 30th and get a blood transfusion on the 29th. I know I will get answers eventually but  but I have lots of questions and am unsure about some things said to me, and I'm  going crazy with curiosity/ confusion etc.

So the  nurse said my blood looks really bad and that with my cyst and other symptoms I am "most likely" I am looking at a long fight with ovarian cancer, chemo, radiation, more surgery

Why would she say this if it didn't have some medical backup? What do you guys think? I know Dr.s and nurses tend to say the worst but this was different than "covering their butt" warnings. I'm so confused and feel so worn out and yucky so I would appreciate answers or even just others experiences.

Thanks,
muddygal

[rmarie]

Was the nurse connected with the Dr.'s office?  irregardless, I would be on the phone and talking to my physician so fast.  If they are leveling with you, shame on them, and shame on her.  She over stepped her boundaries by saying any of that too you, so please report her to the appropiate person, the only way she will learn.  I am also a nurse an it makes me mad.  You are 27 and pre menopausal so the CA 127 is not the most reliable test.  Ask for a copy of your ultra sound that should give you a conclusion regarding the cyst.  You are seeing the Gyn/Onc on Friday, and he best be honest with you.    Do they know why you are losing blood and your platelets are going up?  That doesn't usually occur with OC, unless we are on chemo or had surgery, maybe you also need a hematologist.  Keep us posted good luck and report her.
Marie

[SimplyStar]

As a nurse I am appalled at her statement to you.  She must be an older nurse because back in the early days ANY cancer was a death sentance.  Now according to all stats, cancer is being  "cured" and managed,  I am not saying it is a thing not to be concerned about, but when you have your surgery, the path reports will tell the story.  I am glad you are having an Onocologist do the surgery because, if necessary to do a debalking, they can clean you up the best.  You are young and although your blood work is all out of normal, many things other than OVCA could be happening in your system. Good Luck and I hope  that  "loaf of bread" is purely and simply a benign tumor.

[Kimchi]

After many many months of breathing difficulty, chronic diarrhea (after every time I put food in my mouth), tiredness, bloating, check ups, x rays, blood tests, serious weightloss, acupunture, herbs, vitamins, massages, oils, try this  or try that,  tests for ulcers, mono, pneumonia, bronchitis,TB and many GYNO check-ups to monitor my masses on my ovaries,  I was shown, with an ultrasound, and told that the fluid in my abdomen was not normal and that it was probably 90% ovarian cancer
My doctor worded it differently and in both our cases,  "most likely" or " probably 90%" is not saying that we have OC.  They are saying that is was most probable.  

I told myself that nothing is for sure till they remove and do a biopsy.  I will only believe what the labs results will say and then deal with the results.  

Actually I was relieved in a sense because now I finally had a possible answer/name to my health issues!!! Sadly for me, it turn out to be true and Stage 4...Truly truly hope that your "most likely" will turn out to be a "NOT OVARIAN CANCER".

[Anna-maria74]

What your nurse needs is a bullet, or failing that a gag or perhaps a gimp mask! Maybe a medical book - or any kind of book (can she read?)

Firstly - and most importantly- you can only diagnose ovarian cancer through surgery and biopsy. If you have cancer 'IF' you have cancer which is not always the case due to an elevated CA125 (the most basic fact which even my cat knows) it then has to be staged. Early stage OC has a cure rate in the 90's. Later stage OC is not so promising but woman do go into remission. Your nurse is talking about the absolute worse case scenario and even then you dont have radiation for OC - only in very rare cases. This woman has let her guard down and should be told to hush her gums!

Anna X

[alanpvegas]

LOL...sorry to laugh, but you are going to get that from those in the 'medical' field.  To them, ovarian cancer is an end all..."no hope" type situation.  I can't tell you how many doctors and nurses tell my mom she should be in hospice right now.  To them there is no hope, whatsoever, if you have ovarian cancer...even if you have no evidence of disease!  It's one of those cancers that they heard something about a while ago and made up their mind about.  Couple the fact with that most are stage 3 when diag (which to most doctors and nurses is way too advanced, yet is normal discovery for ovca patients) so why even bother?

So, take it with a grain of salt.  Cancer in general is so misunderstood, filled with 'superstition' in the field (like the fact that you should not get *any* pain relief because you will become addicted...stupid stuff like that), etc.  

My mom has iron/blood issues too...your doctor will work withyou on it.  There are things they can do such as the rbc transfusion they mentioned, or the shot (yes yes, controversial and expensive...there are different types) to boost rbc via the bone marrow, the pills you are taking, etc.

The fact that the nurse even mentioned radiation shows her lack of knowledge in ovca treatment...it is rarely (if ever) used in western countries including America.

[ stepping down from soapbox now ]