My disease has returned :(

Hi guys, it has been 4 years since i was diagnosed with my borderline tumour of the ovaries i had a full hysterectomy in feb 2011 and have been having mri scan check ups every 6 months. Everytime i have gone back for my results they have been ok no change what so ever, but unfortunetly my luck hasnt lasted long and my disease is back :( it has returned onto my pelvis and i am booked in for a cat scan sometime this week to see how much it has affected the area. My gynacologist was hoping atleast 10 years before i would be dealing with this again, he has said i am going to have another operation in january to remove what has returned so gutted as i have recently started a new job and been promoted to manager but i know my health is more important than anything at the moment but i just wonder why and have to put my life on hold again :( x

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  • i had been getting pains in my abdomen, and he done an internal examination which was really uncomfortable and said it doesnt feel right i just knew :( x

  • Well sorry to hear you are back on the roundabout again, and facing into surgery. In fairness you did get a good remission first time around and hopefully surgery in January and any other treatment involved will sort the OC for another four years. Some of us get less remission in fact I would say a lot of us border on two years. My post op chemo was to be my insurance policy and the OC was never to come back but it recurred after two years. My gynae onc left me wait for ct scan as I wasnt clinically sick though I had pain and lost weight. So it is good you have a watchful consultant, I do realise it is not the best time of year to get this kind of news but in reality is there ever a good time? Just try and chill and make your Xmas a nice one, Ok its bad timing for your work position but your health has to take priority as you say. Yes I would often say why me but this evening I have been told of a death of a neighbour from Cancer. This man was only ill a few weeks and his wife predeceased him only a year ago with cancer. They didnt get a chance to fight it so all in all we are indeed lucky

  • Dear Jasmine Rose,

    I am so very sorry to read this, I have followed your yearly posts with interest and you are often in my thoughts, it is never good to hear when a member is back on the treadmill but I particularly feel for you as you are so very young and it would seem that you have had no life at all...I feel quilty that I have had a healthy life until I was diagnosed with OC, and I am a lot older... I have no words of wisdom for you except I shall pray for you that whatever lies ahead (treatment etc) that it will be a lot easier than what you anticipate... Thinking of you and wish I could give you a big hug and make this nightmare go away... Love x G x

  • This illness is indiscriminate and yes you are far too young to put up with it. Hopefully your youth will give you the strength to battle through. Gillx

  • Jasmine - I'm so sorry you are having to cope with this. You've been very unlucky as most Borderline tumours are only stage 1 and don't cause any further problems. But, when they do come back, they are usually still Borderline and easier to get rid of than full-blown cancer.

    With any luck, you will recover more quickly from this operation than your last one. I had a hysterectomy and other bits and pieces removed because of a Borderline tumour about four months ago and I think it is the hysterectomy which takes the longest to get over. And you've already had that. So hopefully you won't need to be off work for as long and will feel fit enough to soon get back to your new job. Congratulations on your promotion!

    Very best wishes for your Op.

    Sue

  • Thankyou im waiting for my ct scan results on the 7th x

  • I'm also in a similar situation, with a reoccurrence confirmed last month! I only lasted 2 1/2 years despite having first line Avastin treatment! At the moment they are leaving any intervention as I am very fit and healthy ish at the moment and it is still fairly small! I hadn't been feeling right since January , with ca125 going up slowly but steadily. They are going to review in March unless I get ill then I have to go back pronto! On the good side I keep my hair for Christmas! I t a bit of a downer as was determined to keep it at bay for at least another 3 years! I have an eleven year old son and am scared that I won't be here to see him leave school! But I'm sure you and I will both fight this reoccurrence and prove every one wrong! So good luck and keep fighting! Xx

  • Hi thankyou so much, what is avastin treatment? i hope you get better soon too and keep strong xx

  • Avastin is a contravesial treatment due to cost. It can prolong remission but is only suitable for some cases with strict criteria.... It is best to ask you oncologist is you are a suitable candidate! And if available in your area.... It is used also in bowel cancer and breast cancer in smaller amounts..... Hope this helps.

  • Oh ok thankyou im just going to have to wait to see my gyno as i dont really know whats going on until i get my ct scan results back x

  • I don't usually post but your message touched me. Brief history - 1993, aged 24, I was diagnosed with a borderline ovarian tumour (ca125 of 272). Ovaries and tumours removed with surgery and a watch and wait.. 18 months later a reoccurrence in my pelvis. More surgery and then 6 cycles of cisplatin. A few years later, ivf and two beautiful children. Then a comple hysterectomy . Oncology hospital checkups until 2008 and since then annual ca125 tests. This dreadful disease can be beaten. You can have a career. I worked as much as could through the chemotherapy - it gave me focus and a reason to get up. I think it is harder for young people to see all their friends moving on with life and career whilst as illness puts yours on hold. Older people attach much less importance to their career when illness strikes. They have partners, families and children of their own. Young people usually have their parents their friends (who are all working) and their careers. Although i am an old fogey now (46!) I do remember being a young woman with cancer and how scary the future felt. If i can be of any help, feel free to contact me.

  • What a lovely reply! I hope this gives Jasmine all the reassurance she needs. Thanks. Vxxx

  • Hi thankyou so much for your reply do you think because i have a recurrence that i will need chemo?? you sound so brave and i hope lifes treating you well do you have check ups regualy xx

  • Hi there

    I also had borderline disease and also look on the American boards. I have seen a very small number of ladies with BOT that have recurrence as borderline and have been treated and have been fine. Fingers crossed so Will you. You have been so unlucky and have obviously done everything right...keeping up with appointments Tec

    I do hope all works out for you...I had a second surgery after my TAJ and SO ans getting over that was far far easier than the big operation.

    Take care...Love and hugs and good luck next week

  • xxx

  • Wishing you all the best with your treatments xxx Trish

  • His Jasmine, so sorry to hear that it's back and you're facing more surgery. Don't worry about work, your health is more important. Your job will still be there waiting for you once you've recovered from the op. I wish you well and please keep us posted as to how you're getting on. You've done this once before, you can do it again, take care, Love Kerry xx

  • I'm very sorry to hear your news, it's very difficult when you have work and family to consider. I have a teenage daughter, and run three businesses, so when something like this happens it puts so much pressure on you. I remember laying in bed with an infection in my abdomen feeling really ill post op and worrying about work. I went back probably sooner than I should have, so I would say please put your career to the back of your mind and concentrate on getting better and allowing your body the opportunity to fight with you. Best of luck.

    LA

  • Hi Jasmine. I am sorry to learn that you have a recurrence. You have been through so much already at such a young age. I hope you will have another lengthy remission period. Good luck for your forthcoming surgery. Ann xo

  • Hi Jasmine rose, I am in a very similar situation to you. Back in October 2011, I was also diagnosed with borderline tumours. After initial laparoscopy, it was determined that there were tumours on both my ovaries and some deposits at other places in the pelvis, including on the peritoneum. At the time, I was planning a future together with my fiancé ( now husband) and planned on having children together ( I have one 10 year old, he has no children) and had a full time job which was going in a great direction for promotion. I was booked in for surgery shortly afterwards and my right ovary was removed, my left one was saved and only the tumour was removed in the hope that we could preserve my fertility, or at least buy me some time, and the deposits were also removed. I was also told that that should be it for a while and I should be able to go off and try for a baby etc. So fast forward 3 years, no luck with conceiving, and by October last year I had started to experience the familiar symptoms of first time round, but of course on the other side. At my next consultant check up I was referred for a scan, and lo and behold, there is another 8cm growth on my remaining ovary. This was in January this year. After a very long year, of waiting for surgery I was referred by chance to a specialist hospital, where they did their own histology on my original biopsies and unfortunately they disagreed with the original diagnosis of borderline tumours, not for the main tumour on my ovary, that came back as borderline still, but the deposits on the peritoneum, which they said are a low grade cancer. So having now had 4 sessions of chemo I am now to undergo cyto reductive surgery in the near future. I am 32, and this started when I was 29. My message to you is this - Firstly, work doesn't matter. You will get your chance but it is your health that is more important. I was very keen to get back to work first time round, and it was really because in my mind I was scared I might never go back, so I went back and was finally doing the management job I had worked for when it recurred. This time, I'm just focusing all my efforts on getting better. Secondly, ( and I'm not sure how easy this is to do as I did not have the benefit of doing so) but ask if the histologist who has examined your results is an expert in borderline tumours, they are apparently a specialist area of histology, and there is a very grey line around them, particularly if it is found that they have spread away from the ovary and left seeds/deposits elsewhere in the pelvis. I do not wish to add more tension to that which you are already experiencing, but if someone had told me that 3 years ago I would have asked many more questions about my diagnosis back then, which might have saved me being in the position I am in now. Best of luck with everything :) Its a long road for everyone on this journey. x

  • Thanks so much for your reply, it has got me thinking ( in a good way) :) i find it really hard to understand borderline tumours, i will be making a mention of the histologist to my gyna because im scared they got it wrong first time around :( and it has come back after 4 years but mri results the last year there was something new there im so sorry to hear the disease came back to you and your keeping as well as you can and best luck to you. xxx

  • Dear Jasmine,

    It is the hardest thing in the world to accept that the cancer is back. Trying to solve issues surrounding your career is difficult because this is something that is keeping you 'sane'. I think we all throw ourselves into something to forget our diagnosis.

    Be assured that the health professionals are doing their best for you, and try and keep focused on being positive and living in the here and now. Take one step at a time, breath......you can do this!

    Let us know how the scan goes, we all have you in our thoughts, and sending positive vibes.

    I was classified as stage 1C back in 2011 and have just gone into 2nd line chemo, so I can understand your anxiety.

    Keep your chin up....keep smiling!!!

    You are strong and have been through so much

    Take care

    Janette x

  • wow i am overwhelmed with the response form you guys :) it means so much to me really does i dont really know whats going on now as i was suppose to have a cat scan sometime this week to look deeper into the disease returning onto my pelvis but havnt heard anything yet my gynacologist just said i will going in for an op early january, but still havnt heard anything yet. He hasnt said anything about chemo as i thought orginally chemo doesnt help borderline tumours as i thought they could only remove/dubulk them i will have to just wait untill i see him again which he said before my op i will let you guys know where i am up to with treatment!! :) again thankyou so much for your replies/advice take care xxx

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