Up and down

I read the posts regular and find them useful and helpful. Now its my turn to share and bare. Im 48 and have oc diagnoised last year June. Hospital missed my raising ca125 in april. The symptons were there but gp never spotted cancer even though i kept going back to them with symptoms. So now after full hystorectomy and six rounds of the dreaded chemo. all was well then after 7 months ca125 starts rising. Ct scan confirmed cancer is back i my lypm nodes in my back. So im on tamoxifen tablets. Last chech up showed ca125 decreasing.

My mum. My aunts died from oc. We have braca 1 gene. My sister had oc year before me and had same treatment and she is still in remussion, lucky thing.

They say that people with braca gene respond better to treatment. So what happend to me then?

I have ct scan and ocology appointment this week. Im praying that its good news. I just want my life back or something better than worrying about cancer.

2 women from my support group with oc passed away recently. So many are still alive too. Take care each and everyone of you. X

19 Replies

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  • You have been through the mill. But you are right in saying that sometimes women with the BRCA mutation respond better to treatments, and there are many more treatments out there for you to try. Also, there are a lot of interesting developments like PARP inhibitors, anti-VEGF treatments, and so on, that seem to work well for women with this gene. I think depression, even despair, is just a part of having cancer, but accordingly to the latest clinical guidelines you must be offered appropriate treatment from a psychologist/qualified counsellor. Some women find antidepressants help, some find talking helps more, some try both, some soldier on regardless without doing anything.

    Personally, I find that talking helps most. But that's very difficult when your entire family is involved - maybe you need someone who is an outsider, because in a family it's all about helping each other. I've only taken anti-depressants once, and they did help, but I was reluctant to take them for more than a few months which, in my case, was enough.

    It seems to me that you are in a dark place right now, as anyone in your circumstances would be. You have a grievance with the hospital, which maybe you should raise - if nobody says anything, then nothing is done…

    But, on the brighter side, it looks like tamoxifen is helping, and many woman with BRCA get a lot of help from drugs like that. Recurrence is just that, it can be treated, and the beast driven away again, sometimes for many years. Best wishes, Vxxx

  • Thanks for the positiveand helpful comments. I did finally find a solicitor after i put my comaint in to nhs. They admitted there errors. But no apology was made. Its with solicitors now battling it out. X

  • I can't really add to Vicky's words. .. Only to say that I hope your appointment goes well this week and you feel a little better. Many friends here worry about impending appointments including myself. Love to you .. Tina x x (You may want to re-enter your post so it's only viewable by members .. only a thought x x)

  • Hi, would you mind if i ask how many mgms of Tamoxifen you're on per day. There was another lady on this sight who had a good result with it, i'm also on it but a lower dose.

    It's quite hard to get your head in the right space but I hate to spend today worrying about tomorrow, as that's a day of not living life to the full, and we all need to do that, ill or not. I appreciate life a lot more since I started this journey almost 4 years ago and have just finished 6th line treatment and have now been put on tamoxifen. So i wait to see if it w

  • Initially i was on 80mg for 6 weeks and now on 40mg. U get hot flushes but i control them by eating less sugar in my diet when i can. I love food.

  • Sorry me

  • Hi

    Its the frustration and the unknown thats the horrid thing and staying positive is a huge achievement. Recurrence js rotten and so many feelings whirl around- why me, why didnt the treatment work first time around .....

    Ive just got to know about a recurrence too and after 2 weeks of thinking about it almost constantly ive decided to not let this disease rule my life -easy to say but its enough worrying about hospital aplts , treatment etc . Its time to be kind to yourself and at the same time not fight it when you feel down some days its a perfectly natural feeling - getting feelings out of your system right now is a good thing whether it be with your friends, family or a counsellor.

    I t.hought you email touched on so many important issues that people living with cancer feel. I really hope your next appointment goes well.

    Take care

    Fiona

    Xxx

  • Thank you. I have been up and down. But im learning to be grateful that im still alive and there are good options. I was getting sick of feeling sorry for myself and being miserable. Now i take care myself and think about those people that are dying or have died. Loving life more than i ever did.x

  • Hi good to see you are sharing your dreadful experience, such a pity the hospital and gp missed the signs :-(. I'm 47 and was told on christmas eve i had a tumour on my ovaries, i finished chemo late July, so far no recurrence. Vicky's post really sums it up.

    Good luck with your appointment.

    Best wishes

    Elaine x

  • Hi there,

    I am at the start of the journey , as I was diagnosed 2 wks ago with oc. You have really had a challenging journey but you have fought it and all I can say is keep fighting! I wish you all the best this week with the results! Im not religious but I walked passed a church the other day and read a poster hanging on the gate: Today is a gift, that's why its called the present!

  • Hope things go well for you. Its tough at times but you too will find the strength you never knew you had to keep you going. X

  • I am so very sorry to hear your news and hope that, as it has done for many of us, this site provides vital support for you, both practical and emotional. I am twelve months clear from PPC but now have a recurrence. My feelings are very different from before and I know I will have to be aware of becoming more despondent this time around. A kick up the backside and the comfort of 'bending a few ears' will hopefully sort me out! All the very best xxx

  • Hello,

    You have had a 'rough ride!!'

    I understand your feelings, and i think all of us feel like you on our journey. Sometimes a recurrence is worse than the initial diagnosis, as first time round we just 'get on' with the treatment, and the reluctance of others to accept a set back is also difficult to deal with, as we are having to come to terms with it ourselves first, before telling others. I have learnt that although we all have the same diagnosis with different complications and stages, we are all individuals and we all respond differently to drugs, so therefore there is no 'set plan' for all of us.

    If you can seek help, if think you will find it is easier to talk to a trained counsellor who understands the thoughts that are going in in our minds.

    I am thinking of you and sending your hugs......xx

  • Hi I am so sorry you have had such a dreadful time. i dont understand why it is like this for you I will be saying my prayers for you. Hugs and Best Wishes. Rosey xx

  • Just want to wish you good luck with your scan result this week. Do hope it will be good news.

    I just feel so angry for you that even with the strong history of OC in your family, it was initially missed.

    Love Solange

  • Wow. Such fantastic replies. Sometimes i feel that no one is listening to me anymore, but i cansee thats not true.

    Thank you all for taking the time to respond. Its touching. X

  • Sorry you have to face this again. I hope in future as we all push education that fewer women will go un-spotted, esp if they gave classic symptoms :-(

    The beast may not be ultimately beatable but can be kept cowering for,a long time, so focus on that. Here's to a strong response to your treatment this time around

    Love

    Sue xxx

  • Hi, Maz.

    I can understand you very well because my gynecologist also has lost the first signs, so when I started my treatment last year I was stage IV, with 44 years.

    For some months I have been totally upset with this situation, but with the help of a psychologist and a psychiatrist I could overcome the bad feelings and now I´m living life to full - still with cancer, on my third chemo line, but enjoying life.

    So I think a psychologist/psychiatrist may help you with your emotions and give you focus to deal with the treatment.

    Hugs, Fernanda

  • Hi im on the waiting list for counselling and is much needed. Im so grateful for having no symptoms at the moment so i can still work and be activ for now. I just have learn to deal with whats happening at each stage and not fastforward my life.

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