Results...not so good

Lisa13Q
Lisa13Q Member Posts: 677
edited March 2014 in Ovarian Cancer #1
Well, I should trust my mother's intuition. Spots everywhere....no symptoms yet....she feels great. No treatment as of now...I loved the gyn/onc's approach...very gentle and supportive. We go back in 6 weeks. When I went to her office and saw the PET scan....the doctor did say this was normal ovca..does anyone else have a spotted abdomen? I'm doing better than 4 weeks ago when I first heard that there were 3 "suspicious spots" on the CT scan. I read the report. That was truly stupid. Lots of lymph involvement. Denial is a much better place. I do like that the gyn/onc isn't pushing treatment. Are recurrances typically more than one spot? or is this just a super duper recurrance. So wish I could send you all a note that says she's dancing with NED....more like she's dancing in a polka dotted skirt!!!!!!!!! She handled it well, but she knows she's ill.

Comments

  • nancy591
    nancy591 Member Posts: 1,027 Member
    #2
    My recurrence was detected early by PET/CT. The CT portion was clear but the PET portion showed one hypermetabolic area on my colon with a low uptake. My gyn and onc both told me it was more typical to have a sprinkling of areas on the colon. This was why I was hopeful the area that lite up was from some other reason. The area measured 13mm, that was in December. As of this May I have 3 areas and one abdominal lymph node. I was detected early but the first treatment was unsuccessful. I am still not having any symptoms. My areas are still reasonably small. I am now on Gemzar/Carbo. Do you know what the uptake was for the areas involved? Do they plan to start treatment once she starts having symptoms? Did they tell you what to look out for.

    So sorry to hear this news.
  • zinaida
    zinaida Member Posts: 221
    #3
    Yes typically more than one spot.
    My recurrance was - 4 spots in my abdominal area. December 2009 CT scan did not see nothing and 6 weeks later PET scan light up this 4 spots. My CA125 jump from 24 to 800 in same time. I did not have simptoms, but doctor start chemo January 12 because of CA125 over 800. PET scan in March did not lihgt up nothing, all 4 spots was gone. I am on my 8th round of chemo, what will start June 8. It is will be last one. My CA125 23 and I am waiting (hope) for single numbers. Dear Lisa did doctor did test CA125 for your Mom ? I wish you and your Mom good luck . Zina.
  • eward
    eward Member Posts: 210
    #4
    intuition
    Intuition is strong in women. What is the CA 125? Has the CA test been a good indicator for her in the past? If your mom feels great, that is important. I do think something should be looked into in less than 6 weeks. Then again, I am not a doctor...

    As long as you are comfortable with the amount of tests and attention being given your mom, that is ok. If you or she have questions, ask them.
  • Barbara53
    Barbara53 Member Posts: 652
    #5
    the main thing
    The main thing is that you are there with her, ready to walk this path with her to the end, which may be a long, long way off. Meanwhile the denial will come back, and that will be good.
  • kayandok
    kayandok Member Posts: 1,202 Member
    #6
    So sorry
    that the report was not good. I think very often there are multiple spots for recurrence. It sounds like your doctor is in tune with your mom's wishes and adjusting to her. Praying for wisdom and strength for you, Lisa. I know this is tough stuff. Please don't give up, though, there is always hope, if she wants to go forward with treatment.
    Hugs,
    Kathleen
  • msfanciful
    msfanciful Member Posts: 559
    #7
    Hello Lisa,
    Please hang in
    Hello Lisa,

    Please hang in there.

    This is very difficult for everyone.

    If she feels great, that is the most important thing at this time. I think a positive frame makes all the difference in the world as to how well one survives this monster.

    From day one , I've always had one "suspicious spot" on my spleen, however; 3yrs later with this stage IV ovca; I know I am blessed.

    I'll be praying for you,

    Sharon
  • Lisa13Q
    Lisa13Q Member Posts: 677
    #8
    msfanciful said:

    Hello Lisa,
    Please hang in
    Hello Lisa,

    Please hang in there.

    This is very difficult for everyone.

    If she feels great, that is the most important thing at this time. I think a positive frame makes all the difference in the world as to how well one survives this monster.

    From day one , I've always had one "suspicious spot" on my spleen, however; 3yrs later with this stage IV ovca; I know I am blessed.

    I'll be praying for you,

    Sharon

    Thanks everyone
    For your support. Yes, I think my mother's doctor is very in tune with her wishes. Yesterday, my mother just said to her, "I can't make these decisions, I just don't know what to do and I trust you." The doctor was great, she replied that, "I am happy to discuss everything with you and then make the best treatment decisions I can for you". On that note, she said, "Let's wait 6 weeks". My mother breathed a sigh of relief. To her credit, Mom knows its very serious and although she wants to fight like He--, she also doesn't want to be miserable. At this point, I am respecting the process, and my mother. I know prognosis is not good for her long term, but over the past 11 months, I have learned to enjoy what we have and I am committed to walking this journey with her. I feel like that is my job right now. Chemo was really miserable for her and I can't blame her for not wanting to jump right back in. Thanks to all for you support and feedback. Interestingly, I am not overwhelmingly sad today. For the first time, since this all began, I feel some comfort/accceptance. I prayed a lot last night and felt like I received some very clear answers. I know this is a short lived peace, but if I can have some serenity about this maybe that will also help Mom have some peace. I (maybe delusionally) felt like I got a little glimpse of heaven for my mother, and it involved her being with her grandmother who she dearly loved. That's not so bad. Trying hard....Love to you all
  • Barbara53
    Barbara53 Member Posts: 652
    #9
    Lisa13Q said:

    Thanks everyone
    For your support. Yes, I think my mother's doctor is very in tune with her wishes. Yesterday, my mother just said to her, "I can't make these decisions, I just don't know what to do and I trust you." The doctor was great, she replied that, "I am happy to discuss everything with you and then make the best treatment decisions I can for you". On that note, she said, "Let's wait 6 weeks". My mother breathed a sigh of relief. To her credit, Mom knows its very serious and although she wants to fight like He--, she also doesn't want to be miserable. At this point, I am respecting the process, and my mother. I know prognosis is not good for her long term, but over the past 11 months, I have learned to enjoy what we have and I am committed to walking this journey with her. I feel like that is my job right now. Chemo was really miserable for her and I can't blame her for not wanting to jump right back in. Thanks to all for you support and feedback. Interestingly, I am not overwhelmingly sad today. For the first time, since this all began, I feel some comfort/accceptance. I prayed a lot last night and felt like I received some very clear answers. I know this is a short lived peace, but if I can have some serenity about this maybe that will also help Mom have some peace. I (maybe delusionally) felt like I got a little glimpse of heaven for my mother, and it involved her being with her grandmother who she dearly loved. That's not so bad. Trying hard....Love to you all

    it's a pretty nice boat, actually
    So now we really are in the same boat. My mother has been getting the "check back in a few weeks" course of treatment for almost 9 months now, and I have been part of a huge and miraculous winding-down process that continues, day by day. Earlier this week when she learned her CA125 went up a little, I shrugged it off and said, after all you've been through, you can't let a number ruin your day. She agreed, said she might not have many more days left, and we laughed about letting a number take the joy out of any of them.

    There is a peace that comes with acceptance, even when it means settling in to die. Being part of that process for the women who brought us into the world is a rare honor that we are blessed to have in our lives.

    Let's remember that on days when our moms are driving us nuts.
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    #10
    Barbara53 said:

    it's a pretty nice boat, actually
    So now we really are in the same boat. My mother has been getting the "check back in a few weeks" course of treatment for almost 9 months now, and I have been part of a huge and miraculous winding-down process that continues, day by day. Earlier this week when she learned her CA125 went up a little, I shrugged it off and said, after all you've been through, you can't let a number ruin your day. She agreed, said she might not have many more days left, and we laughed about letting a number take the joy out of any of them.

    There is a peace that comes with acceptance, even when it means settling in to die. Being part of that process for the women who brought us into the world is a rare honor that we are blessed to have in our lives.

    Let's remember that on days when our moms are driving us nuts.

    Barbara....
    I think I will
    Barbara....

    I think I will print out your post for my daughter....for those days when I drive her nuts. LOL

    Carlene
  • Lisa13Q
    Lisa13Q Member Posts: 677
    #11
    Hissy_Fitz said:

    Barbara....
    I think I will
    Barbara....

    I think I will print out your post for my daughter....for those days when I drive her nuts. LOL

    Carlene

    HI All
    Thanks for all your thoughts. I leave for MN tomorrow as I have to teach on Saturday. I will return in 6 weeks for the next check in to determine whether Mom will be getting Doxil or Parp inhibitor trial. She is carefully planning out her next 6 weeks and going to enjoy every aspect of them. She has a new car less than one week old (she recently leased it) and when reversing out my sister's driveway today she hit the fence with back seat passenger door that she had left open. I thought she was going to cry and I just started to laugh hysterically, of course that made her laugh, what's a new car door anyway? I took a screw out and hey it works great!! She is going to work out daily and has a great attitude. She is determined to fight and is praying that the doxil or whatever will allow her to have quality of life. When we get nearer to that time, I will ask for hints......I hope you all have a great evening, and....thank you so much for your support!!!
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    #12
    Lisa13Q said:

    HI All
    Thanks for all your thoughts. I leave for MN tomorrow as I have to teach on Saturday. I will return in 6 weeks for the next check in to determine whether Mom will be getting Doxil or Parp inhibitor trial. She is carefully planning out her next 6 weeks and going to enjoy every aspect of them. She has a new car less than one week old (she recently leased it) and when reversing out my sister's driveway today she hit the fence with back seat passenger door that she had left open. I thought she was going to cry and I just started to laugh hysterically, of course that made her laugh, what's a new car door anyway? I took a screw out and hey it works great!! She is going to work out daily and has a great attitude. She is determined to fight and is praying that the doxil or whatever will allow her to have quality of life. When we get nearer to that time, I will ask for hints......I hope you all have a great evening, and....thank you so much for your support!!!

    Lisa...
    I have read great
    Lisa...

    I have read great things about the PARP inhibitors trials. If parp trials are successful this may be one of the most famous anti-cancer drugs ever. And the side effects are minimal, compared to conventional chemo.

    Is your mom BRCA positive?

    There is another trial drug - AD5-10 - that shows promise, as well. I have no idea if trials are still open, or if your mom would be a candidate. But briefly, the drug is supposed to initiate a mechanism whereby the cancer cells receive a "message" that binds to receptors and triggers a suicide program. I hope this one pans out. As foolish as it may sound, I just love the visual that goes along with that. Cancer cells committing suicide. That rocks!

    Carlene
  • Lisa13Q
    Lisa13Q Member Posts: 677
    #13
    Hissy_Fitz said:

    Lisa...
    I have read great
    Lisa...

    I have read great things about the PARP inhibitors trials. If parp trials are successful this may be one of the most famous anti-cancer drugs ever. And the side effects are minimal, compared to conventional chemo.

    Is your mom BRCA positive?

    There is another trial drug - AD5-10 - that shows promise, as well. I have no idea if trials are still open, or if your mom would be a candidate. But briefly, the drug is supposed to initiate a mechanism whereby the cancer cells receive a "message" that binds to receptors and triggers a suicide program. I hope this one pans out. As foolish as it may sound, I just love the visual that goes along with that. Cancer cells committing suicide. That rocks!

    Carlene

    Thanks Carlene
    I just copied and e-mailed your response to my mother.
  • saundra
    saundra Member Posts: 1,370 Member
    #14
    My results
    Mine seems to have located in the left lower abdomen. None seen at the second debulking surgery or CT scans in other places. I have never had a PET scan offered. Saundra

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