Does anyone else feel confused by a "Borderline" diagnosis?

Hello everyone. I had a full hysterectomy etc etc recently and spend 2 months believing I would most probably need chemotherapy , however when I got my results it turned out to be a Borderline Ovarian Tumour. It is stage 3 I think so have been warned it could reoccur and just have to be aware of "symptions". I feel as though I should be happy about this outcome, but weeks later I still cant seem to get my head around it although this in turn is making me feel guilty and like a fraud! Surely I should be grateful?!

Are there any other "borderliners" out there who feel the same way and would like to compare notes??

Julie

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  • Hi Julie,

    I am not borderline, I have got the full blown thing! However, I just wanted to say that I can imagine your uneasiness and would suggest that other than just being aware of physical symptoms (if that is what you have been told), make sure you also are aware of your CA125 via regaular blood tests. People will tell you that CA125 is not everything, and that is true, but it is piece of the picture which could trigger you to ask more questions if it was raised or started going up.

    Love Lizzie

    X

  • Hi Julie. I too am a borderliner and entirely understand your confusion! you will notice there are also a few other "borderliners" on here, all equally confused! Last december I had a Laparotomy to remove a number of growths and my right ovary, the growths sound at a very similar stage to your circumstances. I too spent a lot of time worrying that it may be cancerous and the ob/gyn was very concerned about it too,. after the biopsies it came back as borderline. and my prognosis seems to be akin to yours in that they have removed all the growths they can find and it is not treated with any other treatment. I did a bit of research on the internet, and discovered that apparently ( although I am in no way qualified and can only tell you what I have read) borderline tumours are rare. they are not benign, but not malignant, however contain some cells which may or may not turn cancerous. the difference seems to be that where malignant cells spread rapidly and "eat in" to other tissues, borderline are very slow growing and do not invade other tissue. treatment is just to remove the growths and monitor for future growths, although it will depend on specificaly what your biopsies showed and the advice given to you by your ob/gyn, the prognosis in general seems to be far better than if it was the same as full blown cancer, and therefore I have come to the conlusion that, as you say, we should feel very fortunate,. although you certainly feel like your on a middle ground. Take some reassurance from what your doc has told you. thats the best info you have. I found my ob/gyn absolutely brilliant and entirely had my best interests at heart all the way through. so i woudl suggest that if you feel worried or uncertain, maybe try and contact yours. they are the only people that can advise you properly. however, hopefully you can be reassured just by knowing that there are other people out there in a similar situation. i do not know your age, however, at 29 i had just decided to plan a family with my partner, as luck would have it my other ovary was saved, but I have been advised to get on with baby making asap so that shoudl the growths return, I will have many more options open to me as to how to deal with them. best wishes. x

  • Julie,

    Understand exactly how you feel. After my laparoscopy I was told there was a borderline cancer on the surface of my right ovary when previously I had been told something completely different. The results weren't conclusive so I had a full hysterectomy and they found a whole spectrum of cancers. Even after 5 cycles of carboplatin I still have residual cancer that is just too slow growing to respond to chemo.

    The best way to think of it is to think of ovarian cancer as a spectrum with borderline cancer at one end and really aggressive cancers at the other end. Its still ovarian cancer it still needs treating its just that the best option for borderline cancer is surgery and the prognosis is much better. You are not a fraud and you are still coming to terms with having the shock of being diagnosed with cancer. If you are anything like me you probably prepared yourself for the worst case scenario and now finding it equally confusing and wondering what to do with the rest of your life.

  • Hi Julie

    I was diagnosed with borderline tumours in both ovaries and the omentum, 9 years ago now. I felt a bit of a fraud, like you, especially when talking to women who are going through recurrences and chemo. However, I decided to try and make something positive out of the situation and I trained as a ROCC, I have spoken to lots of women making them aware of signs and symptoms and I attend some of the local NHS meetings linked with gynae cancers and survivorship (awful word but it's the one that's used). I have been told I am lucky to have had a borderline diagnosis and I believe it! I'm always aware that the b*t** could come back, so make the most of what I have!

    You have probably been given as good a diagnosis as you can have, maybe you can investigate someone to talk through the issues this throws up for you?Mamillan do this, and so do many hospitals, counselling can be accessed through the gynae nurse specialist. AND .....long may you remain healthy

    Love, Wendy xx

  • Hi Joolz,

    Like you and the ladies above I had borderline tumours - and at age 33 at diagnosis, I didn't fit the OC demographic at all! I certainly found my borderline diagnosis quite confusing, but it seems it is just very rare - my CNS gave me some scientific papers to look at and I did some searching in the literature myself (because I'm nerdy like that) and it was quite obvious that the docs just don't get to see folks like us that often - we are special indeed! In fact my gynae was convinced right up until the laparoscopy that I couldn't have cancer. I feel fortunate in that although the surgeon did not remove absolutely all the disease, the little bits that were left have since disappeared! (I have not yet had a hysterectomy as I'm trying to have a baby using eggs saved before my ovaries were removed). This 'vanishing act' is apparently a special characteristic of borderline - if the main tumours are removed, the implants sometimes just disappear. The doctors don't know why, but I am very grateful, because it means I might still be able to have a child, if I am very lucky.

    All the best with your recovery,

    lots of love

    Cat

    xxx

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