I'm new on these boards, but not to cancer

survivor3innj
survivor3innj Member Posts: 22
edited March 2014 in Ovarian Cancer #1
Hi everyone! I'm new here. I am actually a breast cancer survivor. My mother had breast cancer in 1966, my sister had it in 2002 and I had it in 2008. We are all survivors!!!!! My mother is now 88- talk about a survivor! Between the 3 of us,we have some stories to tell and maybe could be of some help at some point to someone. I belong to a breast cancer support group locally and when I came across this sight it was very helpful to me. I'm actually on this board to get info for my sister. I've read some on the boards and you've all been quite informative. Thank you all. My sister is now in the beginning stages of discovery. We don't know yet, but we do know that her CA125 is rising.2 months ago it was 39.5 and now it is 45. I've learned from you guys that that could mean alot or nothing. She went for an ultrasound today, but had a script for the wrong kind. So...more waiting. My sis had a hysterectomy in 2003 and they left her ovaries which infuriates me! And she was on tomoxifen for at least 5yrs.then femara. She just stopped that. I went through chemo after my cancer, but she didn.t after hers, so I have an idea what could be ahead for her. I always said my mom & sis blazed the trail for me, now maybe I can blaze the trail for her! I don't want to jump the gun though, she hasn't even been diagnosed yet. I really just wanted to say thank you so much to all of you, because you've already helped me (as a sis) so much. Excuse me that I tend to write books when I write and I'm not real computer savvy.I wish you all the very best!! We are all survivors!! Take care!!

Comments

  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    CA125
    Pre-surgery, my CA125 was 4000 (normal is 0-35). I almost fainted dead away when I heard that. But I had a bowel obstruction, and my doctor said that was why it was so high. Anything out of the norm can raise your CA125. Women with Endometriosis routinely have elevated CA125 numbers. It's not a very reliable screening tool, but for some women it is an indicator of how active the cancer is, how well the chemo is working, etc.

    I am halfway thru my first round of chemo and my last CA125 was 53.

    Your sis is lucky to have you. I have often wished I had a sister. Please come back and let us know what her scan shows.
  • BonnieR
    BonnieR Member Posts: 1,526 Member
    Prayers it is nothing but a bump in road
    What a great sis you are for being there. My sister and I have both had ovarian cancer, she has never recurred and I have never had a remission. My younger sister's ca125 at times would go up in the 50s but never has had cancer. So praying that is all it is for your sis, let us know how things turn out. Prayers ♥ Hugs Bonnie
  • survivor3innj
    survivor3innj Member Posts: 22

    CA125
    Pre-surgery, my CA125 was 4000 (normal is 0-35). I almost fainted dead away when I heard that. But I had a bowel obstruction, and my doctor said that was why it was so high. Anything out of the norm can raise your CA125. Women with Endometriosis routinely have elevated CA125 numbers. It's not a very reliable screening tool, but for some women it is an indicator of how active the cancer is, how well the chemo is working, etc.

    I am halfway thru my first round of chemo and my last CA125 was 53.

    Your sis is lucky to have you. I have often wished I had a sister. Please come back and let us know what her scan shows.

    thanks
    I just wanted to say thanks for replying. I was so excited when I saw I had 2. Like I said, I'm not real computer savvy, so all of this so far is a trial run for me (in more ways than 1). Like I said, we are still in the early part. For me, with the breast cancer that was the hardest (the not knowing)...but my sis seems to be doing rather well with that-especially with Christmas keeping her very busy. When I know more, I'll let you know.I hope this week something will happen. Also, my sis lives 2 hrs. and 15 min. from me and my 1st reaction is always I got to be there for her (theres some good to that and some not so good). We all gotta do what we gotta do to keep ourselves as sane as possible!!Thanks for the prayers! I know when I was in treatment they helped me tremendously!
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    BonnieR said:

    Prayers it is nothing but a bump in road
    What a great sis you are for being there. My sister and I have both had ovarian cancer, she has never recurred and I have never had a remission. My younger sister's ca125 at times would go up in the 50s but never has had cancer. So praying that is all it is for your sis, let us know how things turn out. Prayers ♥ Hugs Bonnie

    How old is your sister?
    You mentioned that you were angry at the doctor for leaving her ovaries, but what was her age when she had the hysterectomy? I was 31, so they left my ovaries, too. That was a perfectly appropriate decision, considering my age. I had no family history or risk factors for ovarian cancer, and truthfully, I was way more worried about breast cancer, or colon cancer. I never gave one thought to ovarian cancer.
  • survivor3innj
    survivor3innj Member Posts: 22

    How old is your sister?
    You mentioned that you were angry at the doctor for leaving her ovaries, but what was her age when she had the hysterectomy? I was 31, so they left my ovaries, too. That was a perfectly appropriate decision, considering my age. I had no family history or risk factors for ovarian cancer, and truthfully, I was way more worried about breast cancer, or colon cancer. I never gave one thought to ovarian cancer.

    58
    My sis is 58, she was 51 when she had breast cancer and 52 when she had her hysterectomy. Truly makes no sense whatsoever to leave her ovaries. I've talked and she has talked with Drs. about this and there was no good reason to leave her ovaries(especially given her history). I think the conclusion actually was - for insurance reasons. That's why it infuriates me. I'm sorry to hear that you had a hysterectomy at 31. I know how hard that can be. I went through alot of infertility treatments so I can relate. I've been reading different posts in the past months and more in the past days and I can still blame my bad memory on chemo brain (I think I'll do that for yrs. to come haha), but did you say that in your picture your hair is a wig? When I went through chemo I absolutely LOVED my wig!!!I never met anyone that loved their wig as much as me. It was the hair I always wanted! If I'm wrong about yours, I'm sorry, but it just goes too show how beautiful and realistic wigs can be! It is meant as a compliment for sure.
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834

    58
    My sis is 58, she was 51 when she had breast cancer and 52 when she had her hysterectomy. Truly makes no sense whatsoever to leave her ovaries. I've talked and she has talked with Drs. about this and there was no good reason to leave her ovaries(especially given her history). I think the conclusion actually was - for insurance reasons. That's why it infuriates me. I'm sorry to hear that you had a hysterectomy at 31. I know how hard that can be. I went through alot of infertility treatments so I can relate. I've been reading different posts in the past months and more in the past days and I can still blame my bad memory on chemo brain (I think I'll do that for yrs. to come haha), but did you say that in your picture your hair is a wig? When I went through chemo I absolutely LOVED my wig!!!I never met anyone that loved their wig as much as me. It was the hair I always wanted! If I'm wrong about yours, I'm sorry, but it just goes too show how beautiful and realistic wigs can be! It is meant as a compliment for sure.

    It was my choice to get the hysterectomy.....
    I had to have an A&P repair at 31, and my Gyn gave me the option of a partial hysterectomy (he removed my uterus and cervix). I jumped at the chance. I was done having kids and had always had extremely painful periods.

    My avatar picture is not my wig. I joined the board before I had chemo (or a wig) and used the latest photo I had. It's about 1 1/2 years old. Here is a link to photos of me in my wig......http://www.flickr.com/photos/cmfromtx/

    I purchased a human hair wig and asked for it to be colored, cut, and styled to match my "old hair" as close as possible. I think they did an amazing job!
  • Mawty
    Mawty Member Posts: 133

    It was my choice to get the hysterectomy.....
    I had to have an A&P repair at 31, and my Gyn gave me the option of a partial hysterectomy (he removed my uterus and cervix). I jumped at the chance. I was done having kids and had always had extremely painful periods.

    My avatar picture is not my wig. I joined the board before I had chemo (or a wig) and used the latest photo I had. It's about 1 1/2 years old. Here is a link to photos of me in my wig......http://www.flickr.com/photos/cmfromtx/

    I purchased a human hair wig and asked for it to be colored, cut, and styled to match my "old hair" as close as possible. I think they did an amazing job!

    Your wig
    It's fantastic! Looks just like you're hair! I'd love to get something I really love. I'm going to go to work on it.

    Marty
  • groundeffect
    groundeffect Member Posts: 639 Member
    Patience
    You don't say whether your sister chose to retain her ovaries. I chose to have a uterine fibroid myomectomy (tumor removal) when I was 42, and had the option of a hysterectomy, but did not because I did not want to go through menopause at that time. I was dx with uterine and ovarian cancers when I was 48, but feel I had very good results from the myomectomy, which relieved a lot of pressure and actually gave me regular periods for the first time in my life.

    Your sister may be a good candidate for laporascopic removal of her ovaries, so she may want to look into that with a good gynecologic oncologist.

    When my CA-125 started rising five years after my diagnosis and chemo for OVCA, I was prescribed tamoxifen, which apparently helped keep my CA-125 low, but it never went below the 40's. Was your sister taking it because of an elevated CA-125, or as a back up for her breast cancer?

    I know two women who had breast cancer diagnoses before being dx with OVCA, and they are both doing quite well now. Your sister, if she should have OVCA, should have a distinct advantage of a low stage, which is the best anyone can hope for.
  • survivor3innj
    survivor3innj Member Posts: 22

    Patience
    You don't say whether your sister chose to retain her ovaries. I chose to have a uterine fibroid myomectomy (tumor removal) when I was 42, and had the option of a hysterectomy, but did not because I did not want to go through menopause at that time. I was dx with uterine and ovarian cancers when I was 48, but feel I had very good results from the myomectomy, which relieved a lot of pressure and actually gave me regular periods for the first time in my life.

    Your sister may be a good candidate for laporascopic removal of her ovaries, so she may want to look into that with a good gynecologic oncologist.

    When my CA-125 started rising five years after my diagnosis and chemo for OVCA, I was prescribed tamoxifen, which apparently helped keep my CA-125 low, but it never went below the 40's. Was your sister taking it because of an elevated CA-125, or as a back up for her breast cancer?

    I know two women who had breast cancer diagnoses before being dx with OVCA, and they are both doing quite well now. Your sister, if she should have OVCA, should have a distinct advantage of a low stage, which is the best anyone can hope for.

    good subject title
    As I read your subject title(patience)I had to snicker.I've always prided myself for my patience, but I think when it comes to my loved ones health, I don't seem to have so much. This whole thing with my sister is difficult for me partly because I have no control. When I was diagnosed with breast cancer I moved and fast. I was diagnosed on Feb. 14 and had my surgery on the 26th. I'm sure you realize with all the pre-testing that is needed, that is quite a feat! It was what I had to do. This is my sister, so therefore things are different. I can only do what I can do, and just make sure she knows that I am there for her.Thanks for the reminder- I needed that!! You asked if my sister chose to keep her ovaries - I don't think so, but I could be wrong. I seem to think that it all revolved around her insurance at that time. I also think that the oncologist that she has now (that she likes alot)thought that she was not a candidate for having her ovaries removed laporascopically. Maybe because so much time has gone by and there is alot of scar tissue,etc. My sis was also taking the tamoxifen for the breast cancer only. She used to have low CA-125 counts.Also thanks for the info about the 2 women you know that had had bc and then OVCA. It's stuff like that, that keeps me very hopeful. All of you on these boards have made me very hopeful for my sis. I relay the good news andhope to my sis, it has helped her also. I suggested to her not to read too much about all this, because it can make a person a nervous wreck. That's one reason I'm doing this. I want and want her to have the knowledge, but just the right amount-there's a fine line. Primarily because of these boards and wonderful people like yourself, I am confident that my sister is going to be ok. I wish everyone a Happy healthy new year!! Thank you sooooo much for everything!!