New to this site - for a friend

krisangelas
krisangelas Member Posts: 7
edited March 2014 in Ovarian Cancer #1
Hi everyone,
I've been reading through the messages, and first I want to say thank you for all the wonderful encouragement, the honesty and the community that I've found here. I have been reading the statistics, the medical abstracts etc etc. And when I stumbled on this forum, I was relieved to find you all.

I'm sorry for what you are going through, but I'm so impressed with your strength. I love strong women!!

My good friend and I are just entering this world of OVCA -- she was diagnosed a week ago, and we are still waiting on the staging and typing, surgery and all the information that is so key. Very harrowing for all of us involved -- and absolutely devastating for her. This is where it starts -- the waiting, the patience, the hope.

It was so good to read about how life does go on -- yes changed in many ways -- and how this horrible disease can bring people together. I'm going to take careful notes (I've learned a lot already), and bring this to her in a way that she can accept. I'm here to do the connecting that she will not do. She is private, not computer oriented and very uninformed medically.

Her first symptoms were abdominal pain, then back pain, then bloating, shortness of breath and a feeling of fullness. Vomiting and diarrhea followed. She has ascites, but no visible growths (CAT scan) other than a "large" one on the left ovary. The doctors felt confident stating that the growth was cancerous. She has no family history of this, is 57 and is otherwise in good health.

Thank you again. I will check in here once we know more. Kris.

Comments

  • groundeffect
    groundeffect Member Posts: 639 Member
    #2
    Your friend has a very important element in her favor-your care and concern. Let us know how her surgery goes, and what her diagnosis is. The surgery is no pleasure cruise, certainly, and that's a crucial time for caring support.
  • LynninRI
    LynninRI Member Posts: 9
    #3
    Kris -
    Bless you for being a support to your friend and hopefully an alert set of eyes and ears at all of the many Dr. appointments. OC is no fun, but not having to face it alone made my journey much easier. Let us know what the staging is and how surgery goes -
    Lynn in RI
  • pshnyc
    pshnyc Member Posts: 45
    #4
    Kris,
    Your friend is lucky to have you and you will be a very, very important resource for her as she begins this journey that those of on this list know too well.

    The most important advice to give you right now is that under no circumstances should your friend have surgery by anyone other than a gynecological oncologist. Even if she has a trusted obgyn who says he/she is qualified. Numerous studies have shown that women who are "optimally debulked" at surgery (meaning as much disease as possible is removed) have a MARKED increase in survival. This is very important. Gynecological oncologists have extensive training that traditional obgyns do not.

    Another important resource is ACOR which is an online community of cancer survivors, patients, advocates, family members, etc. They have different lists you can subscribe to where you can get almost real-time feedback from the community. The Ovarian Cancer list is over 1100 strong (yes -- sad there are so many of us on the list!) and these women have incredible knowledge about doctors, treatments, coping, etc. all over the US and the world. It will be a vital resource as you and your friend begin this cancer journey. To subscribe to the list, go to: www.acor.org, select mailing lists; select Ovarian Cancer; fill out the form to subscribe.

    Best of luck to you and your friend. Between this site and Acor, you will have amazing resources available at your finger tips. Don't hesitate to use all of us!

    Best wishes,

    Pamela Elliott
    New York City
    Stage 1 C, Grade 2 endometriod epithilial ovarian cancer. Dx April 01. Unilateral oophorectomy. Six rounds carbo/taxol. July 02 complete hysterectomy. NED for 3+ years and grateful.
  • krisangelas
    krisangelas Member Posts: 7
    #5
    pshnyc said:

    Kris,
    Your friend is lucky to have you and you will be a very, very important resource for her as she begins this journey that those of on this list know too well.

    The most important advice to give you right now is that under no circumstances should your friend have surgery by anyone other than a gynecological oncologist. Even if she has a trusted obgyn who says he/she is qualified. Numerous studies have shown that women who are "optimally debulked" at surgery (meaning as much disease as possible is removed) have a MARKED increase in survival. This is very important. Gynecological oncologists have extensive training that traditional obgyns do not.

    Another important resource is ACOR which is an online community of cancer survivors, patients, advocates, family members, etc. They have different lists you can subscribe to where you can get almost real-time feedback from the community. The Ovarian Cancer list is over 1100 strong (yes -- sad there are so many of us on the list!) and these women have incredible knowledge about doctors, treatments, coping, etc. all over the US and the world. It will be a vital resource as you and your friend begin this cancer journey. To subscribe to the list, go to: www.acor.org, select mailing lists; select Ovarian Cancer; fill out the form to subscribe.

    Best of luck to you and your friend. Between this site and Acor, you will have amazing resources available at your finger tips. Don't hesitate to use all of us!

    Best wishes,

    Pamela Elliott
    New York City
    Stage 1 C, Grade 2 endometriod epithilial ovarian cancer. Dx April 01. Unilateral oophorectomy. Six rounds carbo/taxol. July 02 complete hysterectomy. NED for 3+ years and grateful.

    Thank you Lynn, Pamela and "groundeffect".

    I asked her yesterday if her surgeon was a gyn/oncologist -- she didn't know. I asked for his name and looked him up: and he is. Sounds like that's the first hurdle. Of many. :-)

    I will absolutely subscribe to ACOR.

    My sincere thanks... Kris.

    PS - I may not be replying correctly to your messages. Sorry!
  • BonnieR
    BonnieR Member Posts: 1,526 Member
    #6
    I just want reaffirm what everyone else has said. What a blessing you are to your friend. I will lift you both in my prayers.

    BonnieRose
  • gorget
    gorget Member Posts: 23
    #7
    Hi Kris,
    I too want to add my agreement with all the others have said. I'm fairly new to the site, but unfortunately not new to cancer (2x OVCA survivor - germ cell and epithelial cell). The women that are on this site are all very knowledgeable - I have learned alot from them about OVCA, taking care of myself, etc.
    You are doing the right thing getting as much information as you can for your friend - she is going to need your support through this horrible ordeal. You will be her guardian angel.
    We will all be thinking of you both and keeping you in our thoughts.
    Be well,
    Georgette
  • AnitaCTwomey
    AnitaCTwomey Member Posts: 1
    #8
    Hello,

    I understand the fear of the unknown. There is also the fear of knowing. Cancer does not have to be a death sentence. I am an Ovarian Cancer survivor and let me tell you it was a fight. You can do it. Follow what the doctors say and also have a strong support system. When you are feeling low and feel like you can not do it anymore, that support system will pull you through.

    My prayers are with you. Fight this fight as hard as you can. After you beat this, you will be able to do anything because there is nothing harder to fight than the fight you are going through right now.
  • krisangelas
    krisangelas Member Posts: 7
    #9
    My friend had her debulking surgery today, and while the proper staging and typing are still pending, it would appear that she has advanced ovca.

    Preliminary results look like the cancer involves the reproductive system, section of colon, appendix, omentum -- with small off-shoots peppering the abdominal cavity. The other vital organs are still clear, so they say.

    In the 2 weeks time that we have known about this diagnosis, I have been reading extensively, reaching out to survivors, crying for her and for all of us, and doubting how good of a support I will ultimately be if she needs help in dying. Can I do this so personal thing with someone? Can I get close only to have to let go?

    When I arrived at the hospital, her family was there -- husband and daughter. They were in tears (she was still in recovery). Until then they had been stoic.

    They told me that the cancer had spread around her pelvic area -- and showed me a little drawing the surgeon had made. The disease was in all the classic Stage 3 places (maybe Stage 4 even -- drawing was really rough).

    It took me a bit to understand their absolute devastation and lack of hope: they had been banking on a miracle (benign or early stage) and short of that had done no other emotional preparation.

    Through reading these boards, through your sharing, through all the other information available, I feel an odd sort of relief and renewed purpose. Thank you for that sustenance. Here YOU all are supporting ME.

    We didn't get that lucky miracle, but are now required to do the hard work of helping her through treatment and recovery. And I can do this. At least today, I know I can do this.

    I left the family before she came back from recovery. That kind of grief is too raw, and I felt that they needed to adjust. I can slot in later.

    I still HATE this!!! And I'm mad as HELL!!!! I left a photo-album with pictures of her grandkids and a silly card. I miss her.

    Thank you for listening. Kris.
  • TealRibbon
    TealRibbon Member Posts: 44 Member
    #10
    krisangelas said:

    My friend had her debulking surgery today, and while the proper staging and typing are still pending, it would appear that she has advanced ovca.

    Preliminary results look like the cancer involves the reproductive system, section of colon, appendix, omentum -- with small off-shoots peppering the abdominal cavity. The other vital organs are still clear, so they say.

    In the 2 weeks time that we have known about this diagnosis, I have been reading extensively, reaching out to survivors, crying for her and for all of us, and doubting how good of a support I will ultimately be if she needs help in dying. Can I do this so personal thing with someone? Can I get close only to have to let go?

    When I arrived at the hospital, her family was there -- husband and daughter. They were in tears (she was still in recovery). Until then they had been stoic.

    They told me that the cancer had spread around her pelvic area -- and showed me a little drawing the surgeon had made. The disease was in all the classic Stage 3 places (maybe Stage 4 even -- drawing was really rough).

    It took me a bit to understand their absolute devastation and lack of hope: they had been banking on a miracle (benign or early stage) and short of that had done no other emotional preparation.

    Through reading these boards, through your sharing, through all the other information available, I feel an odd sort of relief and renewed purpose. Thank you for that sustenance. Here YOU all are supporting ME.

    We didn't get that lucky miracle, but are now required to do the hard work of helping her through treatment and recovery. And I can do this. At least today, I know I can do this.

    I left the family before she came back from recovery. That kind of grief is too raw, and I felt that they needed to adjust. I can slot in later.

    I still HATE this!!! And I'm mad as HELL!!!! I left a photo-album with pictures of her grandkids and a silly card. I miss her.

    Thank you for listening. Kris.

    Kris,

    What a wonderful friend you are! Your friend is blessed to have you.

    I will pray for you both.
  • groundeffect
    groundeffect Member Posts: 639 Member
    #11
    krisangelas said:

    My friend had her debulking surgery today, and while the proper staging and typing are still pending, it would appear that she has advanced ovca.

    Preliminary results look like the cancer involves the reproductive system, section of colon, appendix, omentum -- with small off-shoots peppering the abdominal cavity. The other vital organs are still clear, so they say.

    In the 2 weeks time that we have known about this diagnosis, I have been reading extensively, reaching out to survivors, crying for her and for all of us, and doubting how good of a support I will ultimately be if she needs help in dying. Can I do this so personal thing with someone? Can I get close only to have to let go?

    When I arrived at the hospital, her family was there -- husband and daughter. They were in tears (she was still in recovery). Until then they had been stoic.

    They told me that the cancer had spread around her pelvic area -- and showed me a little drawing the surgeon had made. The disease was in all the classic Stage 3 places (maybe Stage 4 even -- drawing was really rough).

    It took me a bit to understand their absolute devastation and lack of hope: they had been banking on a miracle (benign or early stage) and short of that had done no other emotional preparation.

    Through reading these boards, through your sharing, through all the other information available, I feel an odd sort of relief and renewed purpose. Thank you for that sustenance. Here YOU all are supporting ME.

    We didn't get that lucky miracle, but are now required to do the hard work of helping her through treatment and recovery. And I can do this. At least today, I know I can do this.

    I left the family before she came back from recovery. That kind of grief is too raw, and I felt that they needed to adjust. I can slot in later.

    I still HATE this!!! And I'm mad as HELL!!!! I left a photo-album with pictures of her grandkids and a silly card. I miss her.

    Thank you for listening. Kris.

    Your friend may have a good while to live yet. I met with my OVCA support group yesterday, and almost every one there was diagnosed with stages of III and IV OVCA, and they've undoubtedly still got some pep! We're planning an event for September (Ovarian Cancer Month). Maybe you would find some comfort in taking part in an event in your area, and your friend may, too.

    You're doing more than a lot of people would be able to do just by staying by her and her family.

    You may want to pick up the book "How We Die: Reflections on Life's Final Chapter" by Sherwin B. Nuland to read, or see if your library has it on tape (I listened to the tape). Dr. Nuland sheds a lot of light on the subject, and I found it comforting. Talking about death is a difficult for us in our society, because it is treated as such an unnatural event. If you understand more of the ins and outs of it, you may be more comfortable, also.

    You may be surprised by your friend's ability to cope and survive with the disease, and I hope you are. It is important to draw strength from friends - hang in there with her!
  • BonnieR
    BonnieR Member Posts: 1,526 Member
    #12
    krisangelas said:

    My friend had her debulking surgery today, and while the proper staging and typing are still pending, it would appear that she has advanced ovca.

    Preliminary results look like the cancer involves the reproductive system, section of colon, appendix, omentum -- with small off-shoots peppering the abdominal cavity. The other vital organs are still clear, so they say.

    In the 2 weeks time that we have known about this diagnosis, I have been reading extensively, reaching out to survivors, crying for her and for all of us, and doubting how good of a support I will ultimately be if she needs help in dying. Can I do this so personal thing with someone? Can I get close only to have to let go?

    When I arrived at the hospital, her family was there -- husband and daughter. They were in tears (she was still in recovery). Until then they had been stoic.

    They told me that the cancer had spread around her pelvic area -- and showed me a little drawing the surgeon had made. The disease was in all the classic Stage 3 places (maybe Stage 4 even -- drawing was really rough).

    It took me a bit to understand their absolute devastation and lack of hope: they had been banking on a miracle (benign or early stage) and short of that had done no other emotional preparation.

    Through reading these boards, through your sharing, through all the other information available, I feel an odd sort of relief and renewed purpose. Thank you for that sustenance. Here YOU all are supporting ME.

    We didn't get that lucky miracle, but are now required to do the hard work of helping her through treatment and recovery. And I can do this. At least today, I know I can do this.

    I left the family before she came back from recovery. That kind of grief is too raw, and I felt that they needed to adjust. I can slot in later.

    I still HATE this!!! And I'm mad as HELL!!!! I left a photo-album with pictures of her grandkids and a silly card. I miss her.

    Thank you for listening. Kris.

    Glad the surgery went well. As a stage 3c grade 3 survivor. I would like to say she has a great chance of survival. My cancer has spread throughout my abdomen, herniated into my colon, was on my liver and I am still here. I know other women who have had a very long remission and are stage 4. With the support of family, friends and many prayers you will still see a miracle. I say I was given a miracle even though I am dealing with a recurrence right now.

    May God's peace be with you both. Bonnie Rose
  • krisangelas
    krisangelas Member Posts: 7
    #13
    BonnieR said:

    Glad the surgery went well. As a stage 3c grade 3 survivor. I would like to say she has a great chance of survival. My cancer has spread throughout my abdomen, herniated into my colon, was on my liver and I am still here. I know other women who have had a very long remission and are stage 4. With the support of family, friends and many prayers you will still see a miracle. I say I was given a miracle even though I am dealing with a recurrence right now.

    May God's peace be with you both. Bonnie Rose

    TealRibbon, I appreciate your kind words.

    Groundeffect, I will look up this book. It makes me heartsick to think about this. I did just watch a university programming show on palliative care -- cried through the whole thing. I need to face this. Maybe not now, but...

    Bonnie, I wish you only good things and hope your recurrence is a temporary setback.

    The family told me today that the surgeon said there is a 25% 5 year survival rate associated with her type of cancer. I know from your many postings that it's not time to give up hope. Thanks for that. Kris.

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