Totally shocked...but maybe this is common practice?

wolfgang said:
I'm sorry that you got this diagnosis. I am glad that you are going to find a new gyne/onc. I wish that I trusted my own instincts more, when I was diagnosed with cancer.
All I have to say to this is AMEN

I agree that your doctor should have adhered to your wishes. But, having said that, a couple of things. First, you would have had to go in for your stitches and incision check and they know it. Second, the doctors don't always know until the pathology report comes back, and that does take some time. Third, finding out on the phone is much much worse. You are usually alone, or they try to time it during the day that they know you would be home from work, but timing always doesn't work. I know ...I found out on the phone. And, fourth, the "nurse practitioner" was most likely what is called a clinical nurse -- he or she can do everything the doctor can, prescribe narcotics, do exams, etc. , except surgery. In fact, most of us who have gone through treatment will attest that we spent more time with the clinical nurse, than we did with the doctor. They go through much more schooling and board certification than the average nurse or even a physician's assistant to be in that role.

I realize you are having a bad time, but do not give up on this doctor's office. Oddly enough, it seems like the nurse did read the report right in the first place.

Right now I think I will just take a break from all this. The surgery buildup was very very stressful, and I can't believe after all that I am back on this "rollercoaster". I honestly do beleive that dealing with these medical people (with the exception of the actual doctors, they may be difficult but they have not told me anything that was whacky) I have fallen down a rabbit hole where people say anything because in their world it has NO relation to reality.

I won't bother going into the many amazing and incorrect things I have been told since this started, (not minor subjective things but topics such as drugs, cleaning drains, reports, etc...) but it has gotten so bad that I believe they live in their own special world where the definition of "reality" is completely different. It has truly astounded me.

Regardless, the main mass is out. Whether it was stage I (which would be rather amazing with a 30cm cyst) or not, the little guys will have to take some time to regroup so I hope I can just chill out for a while and readdress this in a few days/weeks.

My only real concern is that this is another "hoax", because I don't know how to read the reports, but the report was signed by two doctors, and they ran multple tests and definitely saw the offending little cells, so it seems the report is probably quite valid and accurate.

dear sonya...that is a good plan you have, take a break for now and concentrate on recuperating from your recent surgery by resting and gradually gaining back your strength. i hear ya about deciphering the pathology report...hopefully you can find someone to explain the important parts in layman's terms...one year later and i still have not totally deciphered mine!

the important thing is to accept the appropriate treatment as suggested by a trusted, skillful gyn/onc, whether it be surgery, chemo or both. you may have to let go some control here and allow the surgeon to do what is in your best interest for beating this disease. for now, do take the time to pamper yourself a little and ask for help if you need it. we all need help and support to get thru this. wishing you all the best that this has been caught early. OH, AND HAPPY SPRING!
colleen.

s Sonya

Unfortunately with ovarian cancer it takes the moment of surgery to make a diagnosis. None of the pretests, not even a CAT scan can diagnose with accuracy. It sounds as though you limited your gyn oncologist to removing the mass only?
Most likely he removed the mass and closed, and sent the specimen for a full length regular path exam, doing no quick frozen section exam.
Did he remove the mass via a vertical incision, or a laprascope?
Did you have a ca 125 blood test checked before surgery?
Hopefully your shock will subside and you will have another gyn oncologist perform the needed staging surgery.
Hopefully your anger will not cause a delay in getting this necessary surgery done.
As an RN I have to believe that the office would have phoned had you not appeared for your followup checkup.
And don't be too upset with the nurse practitioner. Many times they are more compassionate than the MDs.

oxox karenann

There should be a law prohibiting doctors to spout out what they "think" before the actual pathology reports come in. They KNOW they cannot 100% give a dx without the final path reports...and sometimes those even need a second opinion.

Having to go back for more surgery in these cases is not acceptable. What is going on out there anyway?

Sorry...another rant.

As you can see from all of these replys - we've all had a cancer diagnosis and various treatments and many of us are on the way to recovery. We wouldn't be if we didn't take a proactive action to seek and receive the proper treatment.

I had the gynecologist complete my hysterectomy and she didn't do any staging. This required a much harder restaging surgery only a couple of months later. But, it was needed as was the radiation and chemo I had. As a result I have a reasonably good chance at a long healthy life.

Many of us have stories similar to yours regarding not being told, being told the wrong thing, no phone calls, etc. However, regardless of this, after you've had time to recover form your surgery, you really need to take those next steps to get the treatment/surgury necessary to ensure a long and healthy future.

Hang in there! We're here to support you all the way!

Vicky

The doc did not do anything medically wrong. They did a frozen sample on the table and the section they pulled (it was a really large cyst) did not have malignant cells. I had limited him to only taking the cyst and the ovary if the pathology came back benign or borderline. He did everything right.

My problem is the unprofessional attitudes, inconsiderate behavior, and constant bad information. Once again the doc himself never gave me bad info, yeah so he said it was all clear after the surgery, he thought it was and that is okay, that is an honest MISTAKE not just pure stupidity.

But just about everything everyone else has said during this process has been bogus and that just amazes me. And yes I mean just about everything! Every question such as drugs i can take in the hospital, barium enema instructions, drain cleaning, if I would bleed all over my hospital bed, CT Scan results, EVERYTHING I have asked has received an immediate and inncorrect reply.

The only thing I fault the doc for is TWICE having the nurse give the results (especially because the nurse that gave me the pathology results was the SAME one that misread the CT Scan report). I don't trust a word any of them say unless they have an MD behind their name, and I am not fond of the MD's.

Ovarian cancer is THE most deadly of all gynecological cancers, if this is/was stage one then no followup is needed. If it is beyond stage one then well...that is a different story. We have a choice as to how we live, ultimately we all end up in the same place. I am not at all sure I want to take the "long route" and ride to that place being cut and chemo'd repeatedly by these people, the treatments are bad, I am starting to think the people are worse.

Sonya wrote:

"Ovarian cancer is THE most deadly of all gynecological cancers, if this is/was stage one then no followup is needed. If it is beyond stage one then well...that is a different story. We have a choice as to how we live, ultimately we all end up in the same place. I am not at all sure I want to take the "long route" and ride to that place being cut and chemo'd repeatedly by these people, the treatments are bad, I am starting to think the people are worse>"



Hopefully your type will be borderline or low malignant potential with no further treatment needed after the staging surgery is done.
But if treatment is necessary please keep in mind that
I was diagnosed at age 49 with stage IIIC epithelial serous.
And after the massive surgery and chemotherapy I am still here, alive and doing quite well, with no recurrence seven years later.
It is not always doom and gloom and the ladies here with a new ovarian cancer diagnosis need to know this.
Wishing you the best outcome.

oxox karenann