2nd opinion seems as flippant as the first

habber
habber Member Posts: 17
in Ovarian Cancer #1
Hi all

Was initially diagnosed with Stage IV ovarian based on pathology of pleural fluid and a pelvic exam a little over a month ago. Have had 2 rounds of chemo and have time for a second opinion. CT showed peritoneal fat stranding but no mass--all else normal.

Just got back from MD Anderson. They did a pap and a pelvic--can't see how they had time to even look at CT scans as I brought them immediately before appointment. The nurse initially said it was likely serous papillary based on the fluid. BUT Based on the pelvic exam, the Doctor made a diagnosis-- but this time peritoneal cancer (because she felt no mass) The pelvic took all of about 3 seconds. No ultrasound, no biopsy no PET. I am having a brain scan tomorrow as I have been having unusual headaches. Nevertheless, I think this all seems really rash--three opinions based on a pelvic and pathology of fluid--especially when I think of the radical debulking surgery. I know the regimen is relatively the same for either except MDA differed in recommending IV chemo following surgery instead of IP as it wouldn't reach as high as the lymph nodes at mid chest--(maybe she did look at those scans!) She felt IP was too harsh for little gain.

I am frustrated, disheartened and have lost much faith in these doctors. (The pharmacy guy actually spent more time with me than anyone trying to get pain management under control).

What do you think--time for a third opinion or just to insist on a PET?

Sandy

Comments

  • kayandok
    kayandok Member Posts: 1,202 Member
    #2
    Hi Sandy,
    you are asking some difficult questions. I don't know much about PPC and can't give you an informed response, but I know there are several gals on here who will respond soon.

    I just wanted to send my support and encouragement. I think it is good that you are asking lot's of questions.

    hugs,
    kathleen
  • habber
    habber Member Posts: 17
    #3
    kayandok said:

    Hi Sandy,
    you are asking some difficult questions. I don't know much about PPC and can't give you an informed response, but I know there are several gals on here who will respond soon.

    I just wanted to send my support and encouragement. I think it is good that you are asking lot's of questions.

    hugs,
    kathleen

    Thanks Kathleen
    I wasn't terribly anxious to get those IP ports. Plus, she reasoned, if we need the big guns we'll bring them at relapse. Which I know seems a bit defeatist but also realistic. 75% of stage IV relapse.


    Sandy
  • Best Friend
    Best Friend Member Posts: 222
    #4
    habber said:

    Thanks Kathleen
    I wasn't terribly anxious to get those IP ports. Plus, she reasoned, if we need the big guns we'll bring them at relapse. Which I know seems a bit defeatist but also realistic. 75% of stage IV relapse.


    Sandy

    It's a shame.
    My mom is 62. She had pain for like two years. She went from the gastro doc to the gyno doc to the gastro doc,etc. Finally after two years of this the gyno doc said the ovaries are only a litttle swollen on your catscan. It's not cancer. She went back to gastro and they couldn't get through her colon. FINALLY, they sent her to doc to do a laproscopy to just go in and possibly oh, maybe we need to just give her a hysterectomy or she needs some colon removed.....NO, over all this time her tumors spread everywhere. I blame them. She has PPC. That's why they link it to Ovarian because ur ovaries can be swollen, or even have tumors but it spreads to peritoneum. The whole debulking thing freaks me out. She is having chemo first which is neoadjuvant treatment. It means, chemo, debulking, chemo. It is terrifying. 8 weeks to heal and than if you are in remission after a while it comes back eventually.
    We have had opinions and they all said the same. It still is hard for me to believe that they let her suffer so long. Doctors are not always right, so i would insist whatever makes you feel comfortable with ur decision. At first we were like, Oh, ok doc....yes doc. But now I have studied so much on this cancer that i ask him questions and he sits and looks at me like, oh crap i cannot fool this one.
    Just keep going. My mom has third chemo tomorrow. Her numbers went down a little. I just know it is scary but i won't give up on her.
  • Best Friend
    Best Friend Member Posts: 222
    #5
    habber said:

    Thanks Kathleen
    I wasn't terribly anxious to get those IP ports. Plus, she reasoned, if we need the big guns we'll bring them at relapse. Which I know seems a bit defeatist but also realistic. 75% of stage IV relapse.


    Sandy

    It's a shame.
    My mom is 62. She had pain for like two years. She went from the gastro doc to the gyno doc to the gastro doc,etc. Finally after two years of this the gyno doc said the ovaries are only a litttle swollen on your catscan. It's not cancer. She went back to gastro and they couldn't get through her colon. FINALLY, they sent her to doc to do a laproscopy to just go in and possibly oh, maybe we need to just give her a hysterectomy or she needs some colon removed.....NO, over all this time her tumors spread everywhere. I blame them. She has PPC. That's why they link it to Ovarian because ur ovaries can be swollen, or even have tumors but it spreads to peritoneum. The whole debulking thing freaks me out. She is having chemo first which is neoadjuvant treatment. It means, chemo, debulking, chemo. It is terrifying. 8 weeks to heal and than if you are in remission after a while it comes back eventually.
    We have had opinions and they all said the same. It still is hard for me to believe that they let her suffer so long. Doctors are not always right, so i would insist whatever makes you feel comfortable with ur decision. At first we were like, Oh, ok doc....yes doc. But now I have studied so much on this cancer that i ask him questions and he sits and looks at me like, oh crap i cannot fool this one.
    Just keep going. My mom has third chemo tomorrow. Her numbers went down a little. I just know it is scary but i won't give up on her.
  • antcat
    antcat Member Posts: 270
    #6
    Doctors
    Hi Sandy, don't get frustrated, I've learned that people have to become very involved in there care, because some doctors need to really take a course in human relations and put themselves in the place of the patient. It's very important to find a gynecologist/oncologist as they are the specialists in this area and I found out it's equally important to have a good medical oncologist and all of these doctors should work well with a person's primary care physician, but you don't really find that today, particularly with medical oncologists. Anyway, I wish you luck, and don't get frustrated.
  • eward
    eward Member Posts: 210
    #7
    opinions
    My mom was dianosed 2+ years ago with stage IV PPC. She presented with shortness of breath, thought it was pneumonia, but within a week found that she had cancer. This was based on testing the pleural fluid and also her CA 125 test was positive(the number was above normal). She had lots of tests that first week. A bone scan, MRI of her brain, and others. She had 2-3 opinions (in Chicago area) within 2-4 weeks of diagnosis. One dr said she wasn't a candidate for surgery. The other 2 drs said she WAS a candidate for surgery. A fantastic dr at Rush Hospital in Chicago performed her debulking surgery and said he was able to get 95% of the visible cancer out. She had 3 small tumors, ovaries(prior hysterectomy removed her uterus), and part of her omentum removed. She also had sand-like grains of cancer other places in her abdomen and remember the fluid was cancerous. Two weeks after her surgery, mom started chemo.

    Why am I telling you all of this? I think it is to say that if you are not comfortable with the care you are receiving so far, try to find the best gyno oncologist you can and get another opinion. My mom was told at the time she was being diagnosed that it is far more important to get the right opinion, rather than to make a quick decision. My mom has never had a PET scan, although lots of the ladies on here have.

    I have read and believe that optimal debulking surgery is a huge prognostic factor with this cancer. You want a top gyno oncology surgeon to perform the surgery, not just any old doc. Official staging of cancer usually occurs at time of surgery, except in cases like yours and my mom's where you had cancerous pleural fluid. Then they know it is spread outside of the abdomen without looking inside.

    Hope this helps.
  • lulu1010
    lulu1010 Member Posts: 367
    #8
    Hi! Sandy
    I know your frustration all too well. I was 14 months getting a diagnosis after seeing Dr after Dr. and visiting ER's etc. I had mostly seeding in the abdomen where it is just like sand thrown over the abdomen. The overaries were ok and only had a small tumor growing into the colon. I had 4 rounds of Carbo before surgery. Doc didnt think my digestive tract would tolerate the Taxol at that time. I then had robotic surgery for the debulking and right back onto chemo. Had a fentenyl patch for pain so I had little pain from surgery. Couldnt do HIPEC because I did not have a big surgery so we are saving that and I will never have IP because of the adhesions. After surgery I had 6 rounds of carbo/taxol ( the taxol was weekly!) Just finished the chemo a month ago and am out golfing and today I got the bike out of the basement....hoping for a ride later tonite!
    My daughter is here for the summer and we have decided to put the whole cancer thing away for now although I am being considered for a trial vaccine at Cleveland Clinic. Please feel free to ask me anything...good luck to you!....you can do it! By the way, I never had a pap/pelvic (Doc said it was the least of my concerns) and I have never had a PET.

    Linda

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