New to all this

I was diagnosed a few wees ago, a complete shock as I was having a hysterectomy and ovary removal as a precaution, as I had some abnormal cells in my womb. During the op they found tumours all over the place. Have since had debulking and staging surgery, which leaves one inoperable tumour attached to my bowel and lots of tiny tumours. The surgeons have talked airily of 'mopping up' with chemo, and imply that they can sort it. However, reading the cancer research website gives the impression that living any length of time with stage 3b cancer is statistically unlikely. I feel confused. Until yesterday, when OH did the research, I felt fairly upbeat, now I'm plunged into despair again.

17 Replies

oldestnewest
  • Hi Rachael - reading stats is never a good idea, and I think the ladies on here would agree with me. There are some amazing ladies on here with stages 3 and 4 who have been going on for years and years. Chemo drugs do astonishing things these days - and while we may not often hear the word 'cure' our condition can be controlled, enabling us to life a full life. Each one of us responds differently and advances are being made all the time - so keeping hopeful is important. Oh yes, and I think I might know you!!

  • Hi Rachel

    Welcome and so very sorry that you have had to join us. I can well remember the shock when I was told months after my operation that my cyst was not a cyst at all, so we all feel your pain.

    Apologies in advance if you know this. I work in healthcare and have done research as part of my job. Collating data and interpreting it and writing a report and publishing it in a journal takes several years. It is then by definition at least a couple of years out of date.

    Care has improved so much recently. The use of a Multi Disclipinary Team to review results and to plan treatment is considered to have made a huge impact on this improvement. This is the norm in the UK. Also you have to take into account the fact that many of the ladies in these studies could have been a lot older than you with significant other issues . Being in your 40s or 50s or 60s and otherwise well makes you far more resilient at coping with treatments and possibly more likely to have been given treatments in the first place.

    Consultants in my experience don't give patients false hope , if he said that he will be able to deal with it ....then he will.

    I hope this helps a teeny bit.

    Love and hugs xxx

  • Hi, I didn't realise you were on here! I know statistics are the work of the devil, and normally I wouldn't take any notice of them. It was because OH, who has been determinedly optimistic, looked at them and was aghast that I was thrown off course. We're off to the RHS gardens at Wisley today, which is a nice cheerful place!

  • Hi Rachael - yes, I dip in and out of here and have found the sharing of knowledge and positive support very helpful! Together we can ...

  • Hi Rachael. Reading statistics is never a good idea. Statistics are just that, statistics, and cannot tell you what will happen to you as an individual. I was told I had about 2 years following a diagnosis of stage 3 OC in 2007. as you can see Im still here, currently no evidence of disease and working full time. Dont write yourself off, regroup and fight. New treatments are coming along all the time. My dad at the age of 49 was diagnosed with lung cancer, he asked his oncologist had long he had, to which the dr replied how long do any of us have. The dr died in an accident two weeks later, my dad died 3 years ago 10 days before his 82nd birthday. Hopefully you get the point Im trying to make . I wish you well. Kathy xx

  • Hi Rachael as the others have said you are individual and we all react differently treatments etc, try to focus on what your medical team are doing for you and what they say to you. I am stage 4 and my onc and CNS have said let us worry about it and you live your life, we can control this. As hard as it is and I worry but I trust these people to do their best for me. This was 2 years ago and I'm doing well and don't plant to go anywhere for a long time. Maybe talking to your CNS might help!

    Take care

    Karen xx

  • I was diagnosed stage 3b in 2006. I have relapsed twice since then, but the treatment I have had is keeping me alive and well. I am currently on maintenance treatment and have been NED (no evidence of disease) since my last chemo in 2014. Hope this helps!

  • Hi Rachael

    So sorry to hear you are dealing with this diagnosis. Like you, I was quite despondent last year when I was diagnosed at Stage 4 and I felt I was lucky if I survived 1 year! Well, it's 15 months since diagnosis and I'm still here and having a good quality of life!There are many, many women who were diagnosed at stage 3 and 4 and are living lives with a good quality some years after initial diagnoses. My advice to you is, don't look at the stats, we are all different and treatments are improving all the time.

    Take care

    Juliet

  • Don't please take statistics on board. There are women here who have survived for 5, 10, 20 years. We are individual, our cancer is unique to us. Try if you can to work with your cancer, don't exhaust yourself fighting it. Your medics will guide you and a positive mental attitude helps. Check out Sophie Sabbage's FB page The Cancer Whisperer. She talks sense. Take care. Xxx

  • Hi, I was diagnosed stage 3/4 in 2010. Take online research with a big pinch of salt because it's always out of date and treatment is improving all the time. You may need more treatment at a later date but that doesn't mean you won't get a good quality of life after treatment for years. I'm having more treatment now but this time last year was walking the Pennine Way and hope to finish it when I finish chemo.

  • HI Rachel and welcome to the site. We are a nice group of ladies who will help and support you as much as possible. For starters, forget about stats, they are totally out of date. Some refer to research done years ago and the US sites are indeed scary. There are plenty of treatment available for you, you oncologist will decide which one. You will feel a lot better when you have a definite plan of action. Forget about Mr Google, he is silly and puts thoughts into our little heads that are confused enough as it is.

  • Wow! Thank you all for these incredibly heartening replies! It is good to have the statistics put into proportion. I guess most of us have our ups and downs - yesterday was a down for both of us, which is unusual. OH reckons that he was hit harder by looking at the stats because he has believed in a 'cure' all along, while I have been less sure. As a scientist he is influenced more by numbers than I am. Today we had a picnic in Wisley in the sunshine, now feeling much better.

  • Hi! I am on the same spot as you, been diagnosed 4 weeks ago, ovary and tube was taken out, started chemo friday, I have stage 3b ovarian clear cell at age 23, I looked into google which is a no-no because it made me feel like I'm dying, this website really helped me, the ladies here are really nice, once you have a treatment plan it kinda sorts things out, try to think possitively, it's hard, but we'll get better, we can do this! 😊

  • Hi Rachael

    I am writing this at 1.30 am as my earlier attempt vanished in a puff of smoke into cyberspace !

    I just want to add to all the other voices here. Please dont read stats. One of your former Prime Ministers Benjamin Disraeli is reputed to have said " there are 3 types of lies : lies, damn lies and statistics ! "

    Please just read the positive stories here. I was diagnosed in 2011 with stage 3c Primary Peritoneal Cancer. If I were to believe the stats that were published at the time I should have been gone in 2years. Of course i was tempted by Dr Google even though I told my oncologist not give me a prognosis . I was depressed for quite a while but as my treatment progressed and worked I relaxed more. I have just had my first recurrence this year in my lymph nodes and started treatment again 2 weeks ago. The oncologist has assured me that as I beat it before there is no reason I can't beat it again.

    Now say goodbye to Dr Google and start smiling again . The women here are brilliant and I wish I had known them 5 years ago. Take care and good luck !

    XXX

  • Rachel, hello & welcome ☺️

    You've already been given some sound advice about ignoring stats...seems like your consultant is confident & on the ball 👍🏻

    I hope you find this site (& others) helpful both for you & your OH.

    Im sorry you have found yourself in the place that you have, but there are so many positive stories amongst the gloom & as someone else said...this is very much a personal journey.

    Ooh Wisley...love it. Lived in Guildford all my life (until I moved to the Cotswolds 2 years ago) & went there almost weekly (Life member). Now, as I'm down that way at least monthly, I always pop in ☺️

    Jemima xx

  • Statistics are definitely the devils work in my opinion.. they used to say if you got to 5 years you became a survival statistic.. I remember when they changed it to 10 years recently being so upset as if as I had reached 5 I was now in danger as I hadn't reached 10.... You are not a statistic.. you are an individual and the ladies on here are lovely and are the only ones I trust.. Mr Google is not your friend. xx

  • Hi Rachael

    Like everybody else says, ignore statistics! One thing I have learned over the last few months is that everyone's cancer is different.

    I was diagnosed stage 3 in January and my oncologist was much less upbeat than yours-he didn't think the chemo would get the remaining tumour BUT-my post chemo scan was completely clear and now he can be much more postitve.

    Chemo is them main treatment anyway, so think positive! Keep in touch with all of us here and we will support you through the chemo.

    Love and virtual hugs

    Lou xxxxxx

You may also like...