How to live through remission without being afraid all the time?

Gerig04 Member Posts: 1 *
edited December 2023 in Ovarian Cancer #1

Hi I am not to sure how to start this of but I guess here goes nothing. First off I am 25 currently and was 21 when I was diagnosed with ovarian cancer on my right ovary. They found a 25 pound tumor in my abdomen attached to the ovary. I am currently in remission but I do carry a gene mutation for being predisposed to breast and ovarian cancer. It is always lingering in the back of my mind everyday that it could come back and be much worse. An if I am being honest it makes it difficult to go out and enjoy doing things. I don't know if it sounds selfish or overthinking to much. I guess I am just wondering how do you live life in remission without so much worry?


  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,454 Member

    Gerig04 - I think you started the topic off fine! You are not being selfish at all. It makes complete sense that you carry these thoughts with you. I think if you find someone to talk to who can help you navigate the journey they call 'survivorship' it might help, but I will tell you this (as a visitor from the Uterine page) the longer the time the easier it gets. I didn't say you forget it, it always will pop up every now and then, but the further you get away from it helps.

    Again, please find someone to talk to. You deserve to enjoy your life dear one.

  • carolinekv
    carolinekv Member Posts: 1 Member

    Hi Gerig04- I can relate to you a lot. I was diagnosed with ovarian cancer at the age of 22 and had a pretty big tumor in me as well, mine was about 20cm big. I had my left ovary removed and after that was in the clear but I am still always so scared for every check up appointment or blood work done because I don't want it to come back. After going through something like that it makes sense to worry about it and not being able to do things you enjoy. I am 23 now and still am struggling with the constant worry as well but something that does help me is knowing that now my doctors know what is going on with me and if anything else does occur again they'll catch it way sooner and it won't be as bad as the first time. Obviously easier said than done, but it gives me some peace sometimes.

  • Arleenkg1
    Arleenkg1 Member Posts: 1 Member

    I am new at this site. I got on to find out how to better care for my niece. She’s 36, stage 2 ovarian/just started chemo treatments. She had been in the hospital 21 days. During that time she had her male companion by her side and she wasn’t telling me truly, what she was going through treatment wise, her plans for care after her release etc. I don’t want him at my home for many valid reasons. She’s home now and I need guidance on how to care for her.

    does anyone know of a direct phone line I can call to get info. I want to do the best for her .

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,454 Member

    Arleenkg1, please don't take this the wrong way but is she wanting your help? It isn't clear if she is in your home, and I wouldn't want just anyone in my home either, so if she needs your help you may need to tell her that this is not something you have dealt with and will need some guidance. What was she told? Can she call the office for a nurse who she can than give you the phone? Not knowing what she had done during those 21 days in the hospital, which is a very long time.

  • rdubins
    rdubins Member Posts: 14 Member

    Gerig04 - Oh no, no. You're not being selfish at all - I understand 1000 percent. Anyone who has gone through what you have knows that all of us cancer gals live with ambiguity. Now--- one could say that even people without cancer live with ambiguity, it's just not as "in your face" as what we deal with. I try to remind myself of that. Nothing is guaranteed - nothing. So the best you can do - the most you can do (and this is ALOT!) is to go at this thing with both barrels. Do whatever it takes, get whatever treatments are offered... treat your body well, eat well, get your exercise and live as though it's not coming back. Very easy to say... not so easy to do. But keep coming back here for assurances. We're with you

  • marilyng6789314
    marilyng6789314 Member Posts: 27 Member
    edited December 2023 #7

    Arleenkg1, It depends on the treatment center, but many have a nurse navigator that will help you with this. Also, if the cancer treatment center is associated with a hospital, then you can register for their version of "my chart" and, if your neice approves, allow you to access her records.

    In Florida we have "Gilda's Club" for patients and caregivers, search and see if there is one or something similar in your area.

    Gerig04, I do understand your concern. Just stay on top of things, exercise, get fresh air, stay up to date on your blood work and, usually, your team will schedule you for periodic check ups.

    God Bless and watch over you both.