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scarednconfused
Posts: 17
Joined: Apr 2014

Ok now I'm completely confused my paperwork gave me the diagnosis of clear cell adenocarcinoma however the Dr never told me that so today I called n asked why did I have to find out on a piece of paper. They said they would call me back they did n said it was never doused to be on there n the onc is trying to rule it out if so why have they given me a cancer nurse and social worker I'm so angry and confused can someone enlighten me please

Hybridspirits's picture
Hybridspirits
Posts: 150
Joined: Nov 2012

do you have a copy of the "official" pathology report?  Is this the piece of paper you are referring to?  If not i would ask for the official pathology report as you want all official document for your review and future reference

scarednconfused
Posts: 17
Joined: Apr 2014

At this point forward I will I do have copies of the records I can get like labs and such but thank you from this point forward I will ask for the official pathology reports I never thought of that and thank you

NoTimeForCancer
Posts: 463
Joined: Mar 2013

Scared and confused, I am sorry, I am having a little problem understanding some of your post.  I will say I found the chemo nurse in my doctor's office to be an angel and she had the patience of a saint.  I would recommend you consider getting a list of questions together and giving your cancer nurse a call.  Good luck on getting some answers and continue to ask. 

scarednconfused
Posts: 17
Joined: Apr 2014

The nurse is a thoracic cancer nurse and same as the social worker they work with people that have been diagnosed with cancer, the paperwork is the referral they gave me for my nurse with the diagnosis. I'm just so confused I don't really understand what is going on but I'm angry because the onc was in surgery today so I got no answers from her just the reception desk I've done all the blood tests for tumor markers another type of ovarian cancer test  etc. I'm having surgery the 29th so unless something happens before then I won't know til after that. I'm meeting with my nurse Thursday and believe me I'll have tons of questions. The first time I spoke to her I read the referral to her and asked what it meant she said that is a diagnosis of cancer I'm thinking because the Dr. Didn't tell me and I decided to read my referrals they're covering their tails I may look for another onc.

Caradavin
Posts: 23
Joined: Jan 2010

Ok, I'm not sure I completely understand your situation, but here is what I know - don't do anything or have anything done until you are certain of your diagnosis, what it means for you, and what needs to be done. Don't be shuffled around and given half answers. Make them answer your questions and refuse to do anything until you know why it's being done. This is your body and your health, you have to take charge. I guess the first question you should ask is whether you have cancer, unless you already know the answer (as I said, I don't completely understand what you are trying to say). Also, get a hold of your official pathology report. They can't keep it from you, it is your right to have it. If push comes to shove, seek out a second medical opinion using that pathology report. I hope this helps or is even close to the type of advice you are looking for.

scarednconfused
Posts: 17
Joined: Apr 2014

THE DR. NEVER SAT DOWN WITH ME OTHER THAN DOING MY CONSULTATION ADMITTING THERE'S A TUMOR GROWING FROM MY VAGINAL CUFF AND A LARGE MASS GROWING ON IT. WE SET UP SURGERY TO REMOVE THE DERMOID CYST I HAVE AS WELL AS THESE GROWTHS ON MY VAGINAL CUFF She stated she was not sure if she was entirely sure about my gynecologists diagnosis but never said what at the end of the appointment I was given referrals to a nurse and social worker for people who have been diagnosed with cancer on the referral it states clear cell adenocarcinoma uterus I spoke with my nurse read it to her as we haven't met in person read it word for word to her she said it was in fact a diagnosis. As time has gone on I've started wondering why didn't my onc tell me? Why am I sering it on paper so I called what they first said is the gynecologist diagnosed it and my onc is seeing if she can dismiss his diagnosis I was then told she was in surgery and that I could speak with her today at some type I said ok 2 min later after that call I was told to ignore the paper I want supposed to see that it was their fault etc. So now Idk if I have cancer or not the nurse gets these referrals all the time I'm sure she understood the diagnosis so A. I've been told I have cancer B. The gynecologist found it C. The onc is trying to disprove it or see if it's something else D. The reception desk tells me to ignore it. I note don't know for sure if I have cancer or not which has completely turned my life into a mess when I was told in fact it is my diagnosis from the nurse as well as the gynecologist but now I'm too ignore it all I've told family friends even my teenager and I'm upset because I feel like my head is being messed with I wonder is there a way I can send a pic with the diagnosis on it if so please tell me how

Double Whammy's picture
Double Whammy
Posts: 2300
Joined: Jun 2010

Really?  Now how can they expect you to do that?  You can go to medical records and sign a release for your pathology report at any time if you want.  Then you'll have it.  It may well be that the surgeon is not willing to speculate on an "official" diagnosis until the surgery and final pathology is done.  She will likely look at and sample other areas while you're in surgery, in addition to removing the tumors themselves.  There's simply no official word until they have the tissue in hand. A biopsy is only a small part of the tissue and scans may be able to identify active cancer, but not its specific biology.    My initial pathology from my biopsy used words like "suspicious for . . . "  my ultrasound said "rule out . . ."  The final say really doesn't happen until after the pathology from the surgery is done and that could take an additional 4-7 days after surgery.  I'm sure they don't want you to panic or anticipate gloom and doom, but they're being rather insensitive about your anxiety and someone (nurse or social worker) should be able to give you a decent explanation and help with your confusion at this point.  Also plesae remember that we were all confused in the beginning of our journeys - because we were overwhelmed and knew absolutely nothing.  The medical profession sometimes forget that and think they know it all and have everything under control, but we don't know that and we need reassurance!  Good luck.  The waiting and what if's are so very difficult. 

Suzanne 

Kaleena's picture
Kaleena
Posts: 1130
Joined: Nov 2009

Its one of the hardest things to do is to seek a second opinion for the first time.   Suzanne is right too in asking for a complete copy of your records (in case you do seek a second opinion or just for your own information).   Also, call and ask for a consulltation with the doctor.  IF they do not want to schedule one, I would get out of there as fast as I can and find another oncologist.

I did that.  I was told I had a recurrence from a CT scan review (which was actually no change from my previous one).   He indicated to me that he needed to do a biopsy, wanted me to have a PET scan, then he would start chemo and then do surgery and that I would probably end up with a permanent colostomy.   I got the PET scan right away and all SUV readings were within the normal limits.  I did have small masses (but they had been there for several years).   I went to a different doctor who did a biopsy (it came back postive), but I only got a call from the nurse indicating that I needed to start radiation.  The doctor didn't call me.   I told her - No.  I wanted a consultation with the doctor.  I got that but then he sent me back to the other doctor.  Finally, I went to a facility out of state.  Gave them all the records, had long discussions and finally I let him do the surgery.  But that was only after long discussions and I understood everything.

Don't let them use the fear factor on you.   You have to fully understand what and why procedures are being done on you.  Its scary enough without putting added stress by not getting the information.  But I think the place to start is to get your records like Suzanne said. You may be surprised what you find or not find in them.

My best to you.

Kathy

Alexandra's picture
Alexandra
Posts: 1221
Joined: Jul 2012

If I am reading all posts correctly, you had total hysterectomy several years ago. Due to a cyst growng on the cervical stump into the vaginal cuff as well as a large ovarian cyst your doctor suggested exploratory surgery. After pap smear someone wrote stage 1 uterine adenocarcinoma on a referral and did not explain it to you.

In my experience it is not possible to stage cancer from pap. If you had uterus and cervix removed years ago due to cervical dysplasia and you were never diagnosed with primary uterine cancer, I don't understand how uterine cancer could possibly metastasize into the vaginal cuff and still be stage 1.

I support what all other ladies told you. Meet with the doctor before you agree to any more invasive procedures. Have the gyno-oncologist (not the nurse, not the social worker, not the receptionist) explain the diagnosis and treatment plan to you. Bring a second pair of eyes and ears with you. Ask all the questions and write down all the answers. Ask for all your medical records in case you want to get a second opinion.

Good luck!

Abbycat2
Posts: 119
Joined: Feb 2014

I am sorry to hear about your esperience with the doctor and staff; I'm not surprised that you are confused and frightened by what is going on.  The women here have all given you great advice.  I suggest that you write down all of your questions and bring the list with you to the doctor's office. Do this each and every time you see your doc.   I found that when I did that-writing out my questions-then I remembered to ask each of them and not get side tracked and forget to ask.   The pathology report following your surgery will be quite telling as to what is going on with your health.   If you have cancer, the report will say what kind it is and the stage and grade it appears to be.  Both your operative report and the following pathology report are very important and you should get copies for your own records.  I have also asked for copies of my CA-125 blood work as this is used as a marker for uterine and ovarian cancer.  The surgeon should be a gynecologic oncologist as these specialist are the experts in the treatment of gynecologic cancers.

I was terrified when I first learned I had uterine cancer and then more frightened when I was told it was UPSC, Stage 3A.  UPSC is always a grade 3, the most aggressive form of cancer.  The waiting to find out what was exactly wrong with me was the worse part of my experience.  I empathize with you and your situation.  As horrible as it is for you right now, I can tell you that with time you will come to accept your situation and will move on.  I can remember early on my oncologist suggesting to me that I take anti-depressants to help me cope and I told him that I needed to grieve the loss of my health.  I told him that if I was still a basket case in 6 mos to a year, then I would consider anti-depressants.  My background in working in the mental health profession helped me to understand that I was experiencing a reactive depression- a normal response to a horrific diagnosis- and that I just needed time to grieve.

My prayers are with you and I wish you the best outcome with your surgery.

Cathy  

 

    

  

 

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