Ok so we got the dreaded news… inoperable tumors

davevg
davevg Member Posts: 114
in Ovarian Cancer #1
My wife and I got the results from a recent CT. There are two golf ball sized tumors in her mesentery one by her spleen and the other is by her stomach exit which explains her problems as of late. These were not there three months ago. The Dr said they are inoperable and not curable at this point but they are going to try and go into a control mode with chemo’s Taxotere and Carboplatin to shrink them. Due to extreme neuropathy and very low kidney function from previous chemos he said some chemo’s can’t be used this time. Ladies I would love your input on this please.
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Comments

  • taiga
    taiga Member Posts: 75 Member
    #2
    have you considered Avastin?

    have you considered Avastin?
  • davevg
    davevg Member Posts: 114
    #3
    Thanks for the response
    Thanks for the response taiga. I guess at this point the only chemos that are off the list are Cisplatin and Taxol. Oh and by the way this is the third reoccurrence of stage IIIc with radiation being the last treatment. What are your thoughts on the Taxotere and Carboplatin?
  • clamryn
    clamryn Member Posts: 508
    #4
    davevg said:

    Thanks for the response
    Thanks for the response taiga. I guess at this point the only chemos that are off the list are Cisplatin and Taxol. Oh and by the way this is the third reoccurrence of stage IIIc with radiation being the last treatment. What are your thoughts on the Taxotere and Carboplatin?

    Taxotere & Carbo
    I am currently on Taxotere and Carboplatin. I have had 4 treatments (given every 3 weeks) I will be taking a Pet/Scan on Monday, 11/21 and the results on 11/23. I will let you know how it is working.

    I have had some wierd side effects from it. Rash on my arms, then my hands got really red and swelled up (huge). Now my fingernails are starting to come off but the doctor says they will grow back.

    Keep us posted on how she is doing. Tell her we are here for her.

    Linda
  • survivingovca
    survivingovca Member Posts: 23
    #5
    inoperable?
    Have you considered another opinion or two? My first two doctors told me my (recurrent) tumors were not operable at all, and advised palliative measures be taken (um - no way!! I was young and healthy!). The third doctor I consulted with was able to remove all of my visible cancer. It amazes me how every doctor I've seen has a different "take" and different recommendations for my cancer.

    Good luck!
  • zarkapopovic
    zarkapopovic Member Posts: 30
    #6
    Hi Dave
    Please get a second and perhaps third opinion on the availability of tumor removal. Study after study shows that survival rates are better for those that have debulking (all visible signs of cancer removed) surgery. Also, I agree that asking about Avastin, which is not a chemo drug but a VEGF drug keeps tumors from growing. It may be worth investigating. However you can't have the drug 28 days either side of surgery.

    Best wishes,

    Zarka
  • Kaleena
    Kaleena Member Posts: 2,088 Member
    #7
    davevg said:

    Thanks for the response
    Thanks for the response taiga. I guess at this point the only chemos that are off the list are Cisplatin and Taxol. Oh and by the way this is the third reoccurrence of stage IIIc with radiation being the last treatment. What are your thoughts on the Taxotere and Carboplatin?

    Dear Dave:
    As others have
    Dear Dave:

    As others have suggested, I would get second and third opinions. I was told I had a recurrence, that surgery would be out of the questions, it would be over a 10 hour surgery and they wouldn't be able to get it all so they would not do it. I did get a second opinion (who was actually with the first group) and he only wanted to do radiation (which would be the only time I would be able to get it at that spot). so I went completely out and got a third opinion. They reviewed everything and met with a team of doctors. Decided they could do the surgery. Not only was the surgery only 3 hours long, they were able to get all of it with clear margins, and to boot, the tumor was negative.

    My best to you and your wife.

    Kathy
  • kayandok
    kayandok Member Posts: 1,202 Member
    #8
    It might be worth
    getting a second opinion. Sometimes "inoperable" can mean "not up to the task" . On the other hand, if you find a doctor that will remove those tumors, and honestly they never know until they get in there, she will still have to have some intense chemo for at least 6 more rounds. There is no easy solution, but I think I would feel better about exploring all my options.

    I just finished my 3rd debulk surgery and am carboplatin and gemzar. So far so good, but the nueropathy is an issue for me too. That is why I am not on cisplatin. Taxotere will probably be my next chemo, if I have to continue.

    Wishing you the best,
    kathleen
  • davevg
    davevg Member Posts: 114
    #9
    I guess the consensuses is
    I guess the consensuses is second opinion thank you so much ladies. Our sister in-law works
    at Johns Hopkins in Baltimore. I have read they have a very good cancer program there and also there is a cancer center in Philadelphia PA. My prayers are with you all and also for a cure for this monster. I have been lurking on here for quite awhile posting here and there and have to say my wife along with all you woman fighting this are my hero's never saying uncle to this SOB disease. Linda I will be so looking forward to your results good luck to you.
  • JoAnnDK
    JoAnnDK Member Posts: 275
    #10
    davevg said:

    I guess the consensuses is
    I guess the consensuses is second opinion thank you so much ladies. Our sister in-law works
    at Johns Hopkins in Baltimore. I have read they have a very good cancer program there and also there is a cancer center in Philadelphia PA. My prayers are with you all and also for a cure for this monster. I have been lurking on here for quite awhile posting here and there and have to say my wife along with all you woman fighting this are my hero's never saying uncle to this SOB disease. Linda I will be so looking forward to your results good luck to you.

    Hopkins doctor
    Dave, I just sent you a private (CSN) e-mail about the doctor I used at Hopkins, etc.

    JOANN
  • davevg
    davevg Member Posts: 114
    #11
    JoAnnDK said:

    Hopkins doctor
    Dave, I just sent you a private (CSN) e-mail about the doctor I used at Hopkins, etc.

    JOANN

    Thank you very much got it.

    Thank you very much got it.
  • davevg
    davevg Member Posts: 114
    #12
    Ok so I have her talked into
    Ok so I have her talked into a second opinion at Johns Hopkens. Took an hour or so of explaining that it is something that no mater how good your Dr is is something most do and besides I feel we need to do it as I don't want to loose her to this monster. Has anyone been through this process? How does it as far as payment? Does your insurance pay... is it out of pocket? Can suggested treatments by them be done by your own Dr.
  • garden gal
    garden gal Member Posts: 212 Member
    #13
    davevg said:

    Ok so I have her talked into
    Ok so I have her talked into a second opinion at Johns Hopkens. Took an hour or so of explaining that it is something that no mater how good your Dr is is something most do and besides I feel we need to do it as I don't want to loose her to this monster. Has anyone been through this process? How does it as far as payment? Does your insurance pay... is it out of pocket? Can suggested treatments by them be done by your own Dr.

    My insurance payed
    for my second opinion, but I also called them before to make sure. Course of treament was done by the first dr(onocolgist, which was great because they were a lot closer to were I live. Hope a second or third opinion gives you a better choice. Kathy
  • Kaleena
    Kaleena Member Posts: 2,088 Member
    #14
    davevg said:

    Ok so I have her talked into
    Ok so I have her talked into a second opinion at Johns Hopkens. Took an hour or so of explaining that it is something that no mater how good your Dr is is something most do and besides I feel we need to do it as I don't want to loose her to this monster. Has anyone been through this process? How does it as far as payment? Does your insurance pay... is it out of pocket? Can suggested treatments by them be done by your own Dr.

    I had a second and third
    I had a second and third opinion and the insurance company paid. I did switch doctors. However, when I switched insurance companies and was promised that everything would be the same, it wasnt until after the fact that I found out that my new doctor was out of network. But just recently, my new insurance company has now added my doctor as in-network. Until that happened, I just got my tests done at a hospital which was in-network.

    If, however, your doctor is out of network, some hospitals may give you a hard time getting tests done. I had a port and since my doctor was out of the area, the hospital eventually refused to flush my port because I did not have a doctor associated with that hospital. The hospital wouldn't even take my local PCP doctor's prescription for port flush.
  • kayandok
    kayandok Member Posts: 1,202 Member
    #15
    davevg said:

    Ok so I have her talked into
    Ok so I have her talked into a second opinion at Johns Hopkens. Took an hour or so of explaining that it is something that no mater how good your Dr is is something most do and besides I feel we need to do it as I don't want to loose her to this monster. Has anyone been through this process? How does it as far as payment? Does your insurance pay... is it out of pocket? Can suggested treatments by them be done by your own Dr.

    I can't answer any insurance
    questions, as I have Japanese insurance. But, the surgery is as good as the skill of the surgeon. And many surgeons just are not up to the task of removing "difficult to get" tumors.

    Wishing you and your wife energy, grace and wisdom. Fighting this takes all three plus whatever else you can throw in including prayers!!!

    kathleen
  • davevg
    davevg Member Posts: 114
    #16
    Ok so I got the ball rolling
    Ok so I got the ball rolling yesterday. Yes our insurance will cover it. I will send all pertinent paperwork scans etc. and there onc gyn and onc surgeon well review them and get back to us. Although... the guy said pretty much most of the time they do concur with the inoperable part. But she could be candidate for clinical trials and the least would be chemo advice. I said hey we'll take what ever at this point. The guy was very very helpful and nice to boot.
  • Kaleena
    Kaleena Member Posts: 2,088 Member
    #17
    davevg said:

    Ok so I got the ball rolling
    Ok so I got the ball rolling yesterday. Yes our insurance will cover it. I will send all pertinent paperwork scans etc. and there onc gyn and onc surgeon well review them and get back to us. Although... the guy said pretty much most of the time they do concur with the inoperable part. But she could be candidate for clinical trials and the least would be chemo advice. I said hey we'll take what ever at this point. The guy was very very helpful and nice to boot.

    Sometimes even when all
    Sometimes even when all concur, it is all about presentation and how the doctor reacts with the patient that really matters. It seems less of a blow, if you know what I mean. When you have a doctor that tells you something and has no compassion or is just cold, you have a cold and scary reaction. But if a doctor tells you something (it can ever be worse than the first doctor), but gives you options to choose and doesn't appear to "Know it All", you can make choices about your health which can give you a better attitude. We all know positive attitudes can do marvelous things.

    I pray that you find peace in your decisions.

    Kathy
  • davevg
    davevg Member Posts: 114
    #18
    Kaleena said:

    Sometimes even when all
    Sometimes even when all concur, it is all about presentation and how the doctor reacts with the patient that really matters. It seems less of a blow, if you know what I mean. When you have a doctor that tells you something and has no compassion or is just cold, you have a cold and scary reaction. But if a doctor tells you something (it can ever be worse than the first doctor), but gives you options to choose and doesn't appear to "Know it All", you can make choices about your health which can give you a better attitude. We all know positive attitudes can do marvelous things.

    I pray that you find peace in your decisions.

    Kathy

    We have a very good repour
    Yes I know what you are saying. We have a very good repour with her Dr. He was visually shaken by the news he had for us. I trust what he says but just would not feel right if something happened and I didn't push for this second opinion.
  • davevg
    davevg Member Posts: 114
    #19
    Has anyone here had or heard
    Has anyone here had or heard of tumors in the mesentery? If so were they operable?
  • situationgray
    situationgray Member Posts: 7
    #20
    davevg said:

    Has anyone here had or heard
    Has anyone here had or heard of tumors in the mesentery? If so were they operable?

    yes i had a recurrence in
    yes i had a recurrence in september. i had a second surgery (the first was back in june, 2009).

    this time, i had another surgery and they removed 3 tumors -
    one near stomach , one in upper left quadrent of small intestine, and one behind liver.

    they were able to get all of it out. i cannot remember what one was in the mesentary but
    this surgery was very difficult (for the doctors) and took about 6 hours.

    it was very risky but i wanted to be aggressive.

    i had the chance to go directly to chemo but i wanted to try surgery.

    this was my 3rd major abdominal surgery - 1 debulking in june, 2009 , 1 for adhesions & scar tissue in feb, 2011, and
    then this one in september, 2011.

    i read that a doctor told you surgery was not possible.

    i went to a hospital for another opinion and got somewhat of a similar story - said they want to try chemo first to shrink things.

    but my other doctors were willing to operate and they thought they could get to the tumors and they did.

    good luck to you and i understand that yes it is true - sometimes tumors cannot be operated on but you have to at least
    exhaust all efforts if you and your wife believe surgery is possible. it very well may be.
    GL!
    niki
  • clamryn
    clamryn Member Posts: 508
    #21
    davevg said:

    I guess the consensuses is
    I guess the consensuses is second opinion thank you so much ladies. Our sister in-law works
    at Johns Hopkins in Baltimore. I have read they have a very good cancer program there and also there is a cancer center in Philadelphia PA. My prayers are with you all and also for a cure for this monster. I have been lurking on here for quite awhile posting here and there and have to say my wife along with all you woman fighting this are my hero's never saying uncle to this SOB disease. Linda I will be so looking forward to your results good luck to you.

    Good Pet/Scan
    Dave, I had good results show on my Pet/Scan. 30% reduction in all of my tumors. Taxotere/Carbo is working.

    Please keep us posted on your wife. Praying that your wife gets good results.

    Linda

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