My ovaries were removed 4 years ago now I have ovarian cancer???

I was diagnosed with uterine cancer at age 22. I had my uterus removed with no other followup treatment and no reoccurance.. I was diagnosed with breast cancer at age 32. I had chemo and have never had a reoccurance. My daughter was diagnosed with breast cancer at age 32. She had a year of chemo. She passed away at age 34. The loss of my daughter is the worst thing I have ever experienced... We were both tested for genetic mutations and both of us were positive for BRACA1 mutation. I have had my breast and ovaries removed. Now I am 56 and have stage 4 ovarian cancer. My CA125 came down to 14.The cancer has spread to my bladder and lymphatic system. I really don't understand how I can have OC when my ovaries were removed 4 years ago for preventative measure. My CA125 was over 1200. I had 6 treatments of Carbo/Taxol chemo. My CA125 came down to 14.The cancer has spread to my bladder and lymphatic system. Now, after a 4 month break from chemo my CA125 is back up again. My Urologist removed 3 tumors from my bladder and saw a mass on my kidney that has to be biopsied next week. I have been having trouble with my kidneys for about a year now. I have all kinds of lower abdominal and pelvic pain. The chemo that I get next is Doxil. The oncologist wants me to have a port implanted for my chemo and bloodwork because my veins are almost useless. I stay weak most of the time. Probably because I am a nervous eater my weight keeps going up. Is there anyone on this site that has had or have a similar story?

22 Replies

  • I have not got any helpful advise re you condition, but I wanted to say you have certainly had your share of bad luck. I too am a strong believer and I will say a special prayer for you tonight and hopefully you will get the answers. Maybe you could try contacting the nurse at overcome I often read how they are good at giving advise.

    Love Babs x x

  • Thank you Babs.

  • Welcome to the club that no one wants to join, I am so sorry for all the trauma and heartache that you have had (and are still having) you have come to the right place for support, there are no words of wisdom, your experience leaves me speachless it does seem unbelievable that you took the measures that you needed to try and prevent OC but unfortunately it only reduces the chances of getting this horrible disease... there isn't any answers.

    Sending you my best wishes I too will remember you in prayer love x G x

  • Thank you Gwyn. Prayers for all of us.

  • I'm so sorry that you have had to deal with all of this, and that you are continuing to go through it.

    I hope that the caelyx will work well for you and give you relief from the pains that you are having.

    I had breast cancer in 2010 and recovered from the treatment just in time to be diagnosed with stage 4 OC, so I know a little of what it is to feel you have got through one cancer only to find you have another. You will find much support and understanding here.

    Best wishes, Monique x

  • Thank you Monique and good luck with your treatments also.

  • You have been through the mill so many times already, I am so sorry. Glad you found us now. The fact the doc is continuing treatment says that they haven't given up hope and I hope you stay bullish too. Reckon the port is a good idea, everyone on here who has these can attest, and some can explain what to expect. It really helps to take that extra, unbearable element of the repeated, painful, exhaustive and often abortive spiking with needles away.

    Good luck with the Doxil next phase. Oh by the way there are a fair few of us on here battling weight too


    Sue xxx

  • My thoughts are with you. I am BRCA2+ My cancer was diagnosed as primary peritoneal, so even if I had had my ovaries removed it would not have helped.Trying to get my sons and 4 nieces to be tested. The girls were told early 30s was time enough. I do not think so and your sad story seems to prove that.

    Best wishes Dorothy x

  • I'm so sorry that you had so much to deal with so much. Good Luck with the Doxil and hopefully having the port will make things easier at chemo time. Unfortunately, a prophylactic hysterectomy only reduces the chances of getting OvCa. You were very unlucky. I've read online the reasoning why this can sometimes still happen despite preventative surgery.

    All the best and take care of yourself

    Sue xx

  • I was so sad to read your story- losing one of your daughters must have been the worst of it. I have three girls ( and three step sons who lost their mother to breast cancer when they were 5, 4 and 1 respectively), so I have every sympathy.

    BUT, you have faith and this will be the greatest comfort. Can I asked if you are living in the UK or Europe? I find that out of the UK Christianity seems to be more accepted as the norm and I think, in reality, I would prefer to live in a Catholic country.

    We are going to a small village church this morning as we are on holiday and I will pray for you.

    Love and prayers

    Anne xx

  • Thank you for the prayers. My family and I need them. I am from the United States. My grandfather came here from County Limerick, Ireland. My ancestors were Catholic. I am a Baptist and study the KJV bible. Much love and prayers for you also.

  • So sorry to hear your story loosing your daughter must have been terrible, now you have this ov to deal with, I also read that even having your breast removed is not full proof against getting breast cancer.I hope the new line of treatment will knock it out for you.Thinking of you Love Jenny

  • Losing a daughter is enough sorrow for anyone to bear. I don't have any useful advice, just sending love and best wishes for the future.

    Thinking of you

    Mary xxx

  • I really think you are a strong woman and you manage to carry on many things both daughter and yourself. Bravo for you¡There are still options to work and I wish you all the luck and all the best. I will pray for you. Best.Pilar

  • Love and prayers for you lovely lady, you have had much to bear and I truly hope that your next treatment will blast out that OC. You are strong - believe you will get back your strength and keep affirming it, the human spirit is an amazing thing.

    Big hugs Amanda xxx

  • I feel very blessed to find this website. I am totally overwhelmed by all the responses. I thank each of you for your love, prayers and positive words. I will keep you all in my prayers also. My cancer is inoperable and not very treatable at this point..... We're still hoping the Doxil will put me in remission. The cancer is in my bladder. It is likely to be in my kidneys.... I am still in a optimistic frame of mind. Keep the faith my prayer warriors! Much love. Lynn

  • Dear Lynn

    I've been away for a few days but just wanted to welcome you to our gang of friends. I am truly sorry for all the pain you have had but send you my wishes and hopes that the chemo works and wishes for continuing strength and optimism with which to fight this #}€%*¥ disease.

    Love n hugs (((xxx)))

    Wendy xx

  • Thank you Wendy. Are there any Americans on here besides me? I noticed most are from Europe and UK. Just curious about this.

  • It is a UK charity, and so think most are British. Lots of love to you.

    Eileen xx

  • I am also a member of Ovarian Cancer National Alliance, which is an American charity, which has similar blogs etc.

    Eileen xx

  • Dear Lynn

    I've only just read your blog and send you my very best wishes. You're most welcome to join us and I think you'll find much support and love on this site.

    You have been unlucky and have had more than a fair share of tragedy in your life. My sister has got through three different cancers. Each one of them has been highly aggressive and incurable - and yet here is she at the age of 64 looking fantastic.

    I hope you're just as lucky. Meanwhile I shall send my love across the seas to you.

    love Annie xxx

  • Thank you ladies so much. This site is the most encouraging one that I have found so far. We may be across the pond from each other but that doesn't matter anyway. Much love to all of you. And Annie, I pray to get as lucky as your sister. Lynn xxxx

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