new to site

Hi. Have not posted before but have been reading lots of posts and found the support so inspiring.

I was diagnosed in April this year with 3 rd stage ovarian Cancer. Shocked!!!!!! To say the least considering I had a hysterectomy when I was 33yrs old. They left the ovaries I was told as I was so young but took Fallopian tubes etc etc.

When I was 40 yrs old, I had chocolate cysts on my ivaries and both were taken!!!! Or so I was led to believe.

NO!!!!! Turns out they could not remove all of the Fallopian tubes when I had my hysterectomy and left behind a small piece on the right hand side.

When they removed the ovaries they apparently could not remove all of them either and a small piece was left which is attached to the small piece of Fallopian tube. Hence my ovarian cancer!!

I was shattered as though I had had discomfort occassionly on the right side I was under the misapprehension that I had nothing there. That is what I had been told and did not believe otherwise.

I am now 67 years old. These 'bits' have been there now for over 27years so please all of you do not become complacent like I did and make extra sure the surgeons have done what they said the have done!!!

I do not want to upset anyone and have taken a long time to consider posting this but feel it should be out there to make others aware. I realise that all these years ago surgeons in particular would rarely discuss the ins and outs with you and were very unapproachable. Thank goodness there are more open dialogues with our surgeons now a days.

Good luck to you all

22 Replies

  • Hi 5Gems, Welcome to our friendship circle. I'm really pleased you decided to post your story and you make an important point about patient empowerment. You have been so unlucky to have developed ovarian cancer and at least things are very different now and patients are encouraged to understand their disease and take an active part in deciding a treatment plan.

    Keep posting and let us know how you get on. Have you had more surgery and chemotherapy? How are you feeling? With a bit of luck if you have had treatment you might be coming to the end of it and can look forward to a good remission.

    xxx love Annie

  • Thankyou for that and yes it is very different now. I have just finished my 1st lot of chemo and am on the icon 8 trial which meant chemo every week for 16 weeks. Had a small op but surgeon decided as tumour is entwined around the bowel he cannot operate which is very disappointing. The chemo has shrunk the tumour and some of the hot spots that were dotted around now waiting to see if I am platinum resistant I think it is called. Hopefully not!!!!! as apparently I will only have a few months before it comes back if even.

    Anyway. How about you. Are you keeping well with hopefully long emissions.

    Take care

  • I'm glad your treatment is finished. I hope you won't worry about platinum resistance. The majority of us respond to chemotherapy and in fact even if women are resistant it doesn't mean to say there's nothing else that can be offered. We need to hold on to that.

    I finished a 2nd line of chemo at the end of February. Had two years completely free after my first line and I look back and think I've had 3 1/2 great years since diagnosis so there are good things which come of it.

    Have loved this last summer and the lovely warm autumn. I love walking my dog, cycling and swim regularly to try to keep relatively fit. I think I may have another dose of chemo for Christmas but that's not going to stop me enjoying myself.

    xxx love Annie

  • Hi Annie. Thankyou so much for that and I take it I have just finished what is called 1st line of chemo? It would be lovely if I could have that time as I have lots to live for. Fingers x and here's hoping. Happy to hear you have kept so well and you are obviously a busy lady. I am hoping to get back into swimming soon as I do love the water and I am hoping to take my grandchildren to look for "Santa" this December.

    Look after yourself


  • Welcome to the site. I was diagnosed in May 2014 so have some idea of what you are going through as do all the ladies on here. Hope you are doing OK and remember we are here for you if you need support at any time or want to get things of your chest. You are quite right in what you say as more needs to be done to raise awareness. It goes without saying women who have had surgery need to be fully informed of what has been done and anything they should be aware of. At present there isn't a general screening programme but they could look at a well woman type initiative that GP practices could adopt. This could possibly be an add-on to the smear test which ironically is thought by some women to test for OC but does not.

  • Thanks or that and yes you are def right concerning screening. You would think something could be put in place. Yes I think I will certainly find this site helpfull and will offer my support to any one who wishes me to. I hope you are keeping well. Take care

  • Hi 5gems, well I am kinda in the same boat as you in that after been given chemo as an insurance policy I was told I would not have recurrence. However, they failed to inform me that some of the diseased ovary remained in situ because it was near a major blood vessel and surgeon decided to let it be. So I have had many recurrences, the first one wasnt noted in time not due to my gp but to onc team. So eventually I got a ct scan and then told the whole story, it was if my life had turned upside down. Knowing I had a battle on my hands, I decided to fight the disease rather than the medics involved. So four years on had minor recurrence which was dealt with by rt and then last year, had third chemo regime. Gemzar/Avastin. I completed the Gem in Feb and still on the Avastin, I am fortunate it is available and is working so far. Yes this thing hits us when we least expect it, I agree the doctors are not fully informing the patients as to the whole story. But I am here to blog this. In between treatments, have managed a few weekends away and I am back into walking again. The Avastin has minor side effects but its manageable. What I would say is if you feel you need stronger anti nausea drugs do ask for them and do ask questions. Wishing you well and a long remission after finishing treatment

  • Hi. Thanks for that and yes it is shocking that these things can still happen. How many lines of chemo is possible. I am hoping my treatment will allow me a long time between treatments. Fingers x . Take care and hope you keep well

  • Welcome 5Gems! Your story has similarities with my own. Had hysterectomy early 30's, ovaries left due to my age! Was under impression that my womb and tubes had been removed but apparently not. Only womb removed. So wrong that you were not told they had left part of ovary. The other problem is so many of us don't get symptoms until it's spread. Luckily there is now much more awareness about OC and we can only hope that more women are diagnosed in the early stages.

    I have just been told 'it's back' so I'm waiting to start second line chemo. You will get a great deal of support on this site, it's helped me tremendously. Just 'talking' to each other, whether it's for support or to give support is very therapeutic.

    Good luck with the rest of your treatment.

    Best wishes

    Annette xxx

  • Thank you so much and sorry to hear it is back. Are you starting 2nd line chemo soon. I am only 2weeks from my final chemo session and hoping it will not come back for ages. Here's hoping anyway. Take care and hope all goes well.

  • Yes, hoping to be starting 2nd line in a couple of weeks. First line was 3 cycles of chemo, surgery then a further 3 chemo's. Had 18 months free after finishing 1st line treatment which my Onc thought was good but you always want more! Hope you have a good long break from disease.

    You take care too

    Annette xxx

  • Hope all goes well and that you get longer this time as you said we always want more. I am wondering how many lines of chemo can people have'!!

    I am realising how important this site can be and I will be thinking of you as you start your next chemo sessions.

    If you feel like talking at any point please do not hesitate to get in touch.

    Jacqui.x x

  • Thanx Jacqui - I'll keep you posted!

    Annette xxx

  • That I cant answer but one person I know has been on chemo since 2010 non stop but had a break past six months with only Avastin and she was able to get away for the first time in a while. There are different regimes and drugs and there is a new targeted therapy coming on line in the Uk it is in the form of a daily tablet it is a drug used for kidney cancer and now on trial for oc so there is always hope. Well I have had a break now since Feb that is almost nine months so happy with that although on Avastin and so far so good.

  • Well that is a long haul. Had not heard either about the pill you mentioned. This site has good info I think. Thanks for that. Take care

  • I cant remember the name but its something like pazuribab you can google the article in the daily mail and some hospitals are using it in the uk now but not over here, sorry about the spelling but hopefully you can find the article best wishes

  • I will do that Thankyou. Hope all okay with you.

  • I just googled and here is the name for you with the right spelling this time haha/ Pazoparib. We have asked over here if it is available as usually trials run side by side in both countries but my onc hasnt heard of it yet. I am doing ok, I have had three chemos and one rt regime. Last time round I had Gemzar and Avastin and finished with Gem in Feb but having Avastin every three weeks. No great side effects but on it indefinitely. Onc was happy with last scan. I did return to work but cut down hours to 12 a week. I have been able to get away on hols for a few days and I am trying to get better at walking. Got very fed up there for a bit but on track now again

  • Hi and welcome to our club. Interestingly I attended a meeting last year at which a Professor gave a talk and he said they are now beginning to think that ovarian cancer actually starts in the fallopian tubes.

    Good luck with your last cycle of chemo. Keep in touch. Ann xo

  • Yes I was told that on the day I heard I had oc. My answer to the surgeon was 'but my Fallopian tubes were taken out'. His answer was .......NO a small piece was left as the surgeons could not remove all of the tube. It had been lying there for over 34years. Still cannot believe it .


  • How can we make extra sure that the surgeons have done what they said the have done?

  • well that is the big question. In retrospect, I. Should have pushed and pushed to have the right side of my pelvis re examined though I am pretty sure there were no scans available that I remember of. I should not have become so complacent and unfortunately we do tend to trust what they say. I should most certainly have had check ups at least even if they had been yearly so that it could and would have been in my psyche. I only ever had a check up for both ops around 6weeks after each op and that was it !!! The letter I had read out to me by my GP states that bits were left but I had never been told. Now I believe, I would ask to read the results myself. Hope this all makes sense. Take care.

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