Devastated and cotradictions

I had my oncology appointment yesterday after final scan after chemo. After surgery I had a small 0.5 deposit left on my liver and was assured chemo would zap it. My scan is clear but oncologist said I will only ever be stable and never in remission because the deposit was left and would grow back. The surgeon told me it was dead matter and would not 'come back to life'. I know I ask too many questions but I asked her if I would live to 60 (I'm 54 in 2 weeks) and she said well possibly not but live my life. She said as long as I was well she would keep giving treatments. All through this I have been so positive and had hope. I feel so sad now and can't stop crying. To top it all I have a lump on my scar and have to have an mri to rule out it being a tumour. Sorry to rant but I am devastated. X

38 Replies

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  • I send you the biggest virtual hugs and a lovely, lace-trimmed hanky to dry your tears. (Use tissues for snotty tears and runny mascara.) No medic can predict how long anyone will live, so ignore the stupid comment or better still say you intend to sue her for grevious mental and emotional stress for insinuating you will possibly not live until you are 60. Take each day as it comes, don't look too far ahead ... Seeing 65 and our 40th wedding anniversary will be great, our oldest is getting married in 2017, then if we are uber blessed there will be grandbabies. Make a list of all the lovelies you are looking forward to and tick them off as they happen ... And keep adding to the list!

    Get that lumpy scar sorted soon, Gleedy. And if you want to rant, then rant away hon. No one will think any the worse of you.

    J xxx

  • Thank you. I know stable is good. I ask too many questions. I'm my own worst enemy and likea things all ordered in little boxes and cancer can't be boxed. I'll pick myself up. Xx

  • According to some people, I am the world's most irritating questioner but it is my body, my health so I gave every right to ask as many questions as I want. You will pick yourself up but until then take time out to just be ... Hugs. Xxx

  • I have been battling ovarian cancer for 2 years and am on my third recurrence. I never ask the question of how long I have. I was 60 when diagnosed. My mum is 88 and no cancer on her side so thought I would make a good old age. I don't think about it now.

    My husband was diagnosed with lung cancer in 2007 and given 6-8 months to live. He was 55 at the time. He had his 65 birthday in May. We were devastated at the time he was diagnosed and the oncologist just came out with his prognosis of 6-8 months. I took a career break to care for him as his chemo regime was tough.

    We are not statistics and that what doctor use to predict our illnesses.

    Keep positive and ignore any predictions of recurrence. Try not to meet trouble half way.

    It is hard though. Sending you lots of hugs. Stay well xx

  • That really helps. Thank you. No cancer of note in my family. All grandparents were octogenarians and great grandparents 99 and 101. I really have turned my thoughts since Friday and mainly because of all of you uplifting ladiesxxx

  • I'm so sorry. Once again I observe that it's often in the words that people use as to how we feel. Because there is always hope and that mustn't be crushed. If your onc had answered your question with 'possibly' rather than 'possibly not' you would have felt a bit better. It always takes time to get over an interchange like this - it is Big Stuff and no mistake. For my part I accept 'stable' as very good indeed and who knows, it might get better. Keep living well, eating well, exercising and being very, very kind to yourself.

  • Very true. I'm now concentrating on stable xx

  • I had a lump in my scar that grew and grew during chemo. I had surgery to remove it a month after I finished chemo and it was infected granulated scar tissue - my doctor told me he thought it was a tumour before I had it removed, so I understand that feeling of total devastation thinking the chemo hasn't worked at all. I'm now nearly a year after treatment and so far so good. I think stable sounds positive and take hope from all the amazing ladies here who have defied the odds and keep going xxxx

  • Thank you. That's reassuring x

  • If you were 54 (or indeed 59 1/2) and in good health, you 'possibly' would not live to 60! We all have to contend with that proverbial bus that might hit at any time!

    I am on this forum for my mum, but I have been reading stories for almost 3 years. When she was first diagnosed her staging & extent of disease, and general poor health, was such that no-one expected a positive outcome. I looked at the statistics & thought this was, effectively, and unsurvivable disease. THEN, I saw a completely different perspective from ladies on here, and this eventually caused mum to change consultant. Her diagnosis remains the same, but the consultant's attitude puts a completely different perspective on things.

    It sounds as though you have had successful treatment, and you asked a question which your Dr answered based on statistics, and not on you. Statistics are made up of averages, and few of us are average !

  • I do have a lot to be positive about just had a melt down combinationed with the scar issue. Xx

  • You are entitled to that - and this site is really good for a vent. I hope your scar tissue resolves soon

  • That's such a kick in the teeth ... Do they realise what they are actually saying... My onc is very direct and has said some right corkers ... I do respect her opinion and what she says so I think you cannot help taking things to heart... There are no guarantees and we are painfully aware of this but we don't have crystal balls neither does the onc... Who knows what is in our future we are surviving this dreadful disease ... We have support of the site and the wonderful inspiring ladies and we smile at the irony of OC ... Chin up lass keep walking through life good luck for your scan I've got my fingers crossed ... Big hugs 😍😍😍

  • My partner has echoed your words this morning. Xx

  • Let us all unite to stop oncs coming out with 'right corkers'!

  • Hi gleedy

    Once again another crass remark made by an oncologist. I often wonder if they get much training in psychology.

    You are an individual and not a statistic. I could write a book the number of times my consultant has mentioned statistics and research. And I want to scream, " but I'm me! "

    Please stay strong Could that lump be scar tissue?

    Lots of love

    Judy xx

  • I'm hoping so. She has said it would be unusual for another sinister tumour this quickly x

  • If you are well you can have more treatment? So keep yourself fit and well in mind body and soul. Unfortunate that you had to come across an oncologist with such a brutal bedside manner, but as meboo says none of us are average, and she can't predict how you will respond. Have a good cry and then dust yourself off and get ready to carry on being amazing xxxxx

  • I'm starting the dusting. Thank you all you lovely ladies xx

  • Hi Gleedy its quite alright to have a melt down, we all have them. Sometimes it is hard hearing the words chronic illness but how many other chronic illnesses are out there. I am stable at the moment and hope if I have recurrence there will be something else there for me to try. There is always hope and in the meantime we have to live our lives as best we can, perhaps organise a small trip or even a day out to take your mind off all things hospital. Some oncologists do not have great interaction skills and say how it is but then again it is good to have a level playing pitch I do hope the scan will show all is okay. I also have a thingy left because the full ovary is near a major blood vessel so it rears up now and again, I had to wait a few years post surgery to be told that!

  • I had a spot of birthday present buying today and just enjoyed the day with my mum whose birthday nearly the same day as mine. Xx

  • Hi Gleedy,

    Another onc with a personality bypass! Don't take any notice,you just go on as before,but as others have said,make plans and look forward.

    I myself am not a question asker, I would rather not know,but I have a gentleman of an onc, who tells me I am cured,he won't hear of NED,or in remission and he would tell you what ever is wrong can be fixed and to live a full life.Even when they thought I wouldn't make it he was positive and didn't tell me I had about a couple of weeks left,before treatment until after finish of treatment.

    There are plenty of ladies here who are living life and outdoing diagnosis and I am sure you will be one of them,grit your teeth honey and prove your onc wrong,

    Lots of love

    Carole xxx

  • Thank you carole. This site is such a tonic x

  • You rant all you want Gleedy, how cruel of your onc to say that to you, mine has been quite sympathetic and told me I am me and not a statistic.

    Be good to yourself build up your strength, but always remember we are individuals not text books.

    Virtual hugs Ellsey xx

  • Thank you x

  • It's good to have a rant Gleedy and we will always listen, some oncologist's do not have any people skills!!! I just want to give you a very big hug and lots of love, live life for today, look forward to every day and be positive.

    Karen

    Xxx

  • Thank you x

  • I'm probably the opposite of you and always ask for the highlights only. I read a scan report once and had myself dead and buried. That was the end of having too much information for me. I now have an agreement with my Oncologist that he tells me the important details and I leave the rest to him. I'm usually a woman for every details and love to analyse but I've made the decision on this one to trust my Onc and as he said to me if there is anything I want more detail on then he will tell me warts and all. One of the other consultants on his team told me straight after my op that there was a high risk it could come back within 6 weeks I still haven't forget about that and even though it was true I wasn't ready to hear it at that time. When I'm going for a scan review I like to see the Prof as he knows me well now and I can take on board what he says.

    Stable is a really positive word and one that I like to hear. I still have spots on my liver and stomach but if they stay as they are my Onc and I are both happy with that as I've no symptoms and on a trial. When I was told by another consultant that I had 6 weeks to live and went to see Prof J he told me I was not a statistic and even if there was only a 1% chance why couldn't that be me. Here I am two and half years later. So like me and the rest of the ladies on here you are not one either. You do have hope and will get your positivity back. Love and hugs xo

  • I am definitely taking that route in future. I am always inspired by your journey as you were the first person who replied to me in January and have PPC. Thank you x

  • What a wonderful attitude from your onc, Julie. I am with you on the selective detail - it helps us live a happier life!

  • Hi T,

    You know what? I think we expose ourselves to way too much information sometimes. In fairness, she can't predict how long you live and I'm guessing it's a question many of them dread us asking.

    The scan is clear and 'stable' sounds positive. That's what we have to hang onto. You're vulnerable and anything remotely negative will make you feel crap.

    I can't begin to tell you what's gone through my mind over the last few weeks so I know where you're coming from. I don't know if it's the seasons changing but this last couple of days in particular have been horrid. I could be talking about anything then break down crying in the middle of a sentence.. This b@stard disease is ALWAYS lingering in my head...

    I was chatting to a lady at the SPA I visited recently. She had undergone breast cancer fourteen years ago and just recently Ovarian. She didn't want to know the staging or the cell type or anything remotely 'medical' for fear of scaring herself to death. I could see her point.

    That said we warriors have a healthy thirst for knowledge that sometimes we aren't emotionally prepared for. Perhaps we should consider how we best adapt to that? Hmm.

    Take it steady kiddo. We're always here.

    Debs xx

  • You have just said how I've been feeling. I have been very weepy. Think meltdowns are a great relief of pressure. I feel so much better 48 hours since the appointment and positive again. Xx

  • Just sending you lots of love, and to reiterate what others have said here - we're all individuals and it's impossible for anybody to predict our life expectancy - we know this for a fact from all the stories on this site and in loads of other places. xxxxxx Sundra

  • Thank you x

  • I remember being told by my surgeon only 5 days after my op that I had only a 40% chance of living for 5 years. I hadn't even asked the question! Then my oncologist 2 weeks later that there was a 25% chance of being cured though he did soften the blow by adding that OC can be treated again and again (not that I saw that as a great prospect at the time!) I don't know whether they are bound by legalities to tell us this sort of info but it was way too much to take in for me at the time. Definitely think they need more training on the communication front! But as you've seen on this site and from the replies there are so many ladies defying the odds and living years with this rotten illness. If scan is clear and you feel well that is to be celebrated and I'm glad you are already feeling a lot more positive. Keep doing what you love and be kind to yourself. Love, Madeline x

  • How awful to be told that after the trauma of a major op and all te lead up. Honestly have they ever been a patient? I do feel quite well and I would t be delving so deeply again. Thank you for your support xx

  • Hi Gleedy

    I am only reading posts and replies now as I always get posts a day later than everyone else ! I have read all those positive replies and just want to add mine. Five years ago I told my oncologist I did not want a prognosis after he had confirmed high grade serous stage 3c PPC. In fact I was only told the PPC bit.

    I went through successful chemo and still didn't know the prognosis . In fact by the time I found out the survival statistic of this disease I had already gone way past my " use by date ! " . I'm now back on chemo for recurrence in lymph nodes but I am still optimistic.

    Your oncologist like mine should have gone to charm school. I really believe that all oncologists should have extra time added to their training to learn empathy with patients. People who deal with vulnerable Cancer patients should learn most of all how to talk to their patients .It's not rocket science !

    You don't ask too many questions . It's your life and your body and you are entitled .

    Enjoy the rest of the weekend and stay optimistic.

    XXX

  • Well what can I say that hasn't been said already, firstly big hug even if it's virtual and secondly never ask that question again!!! Your doctor cannot say how long you will live unless you are within days/hours of death with all the indicators right there! That might sound scary but it's true!!! You're not at that stage and try as hard as you can to get past what your doc said. You are alive and that brings HOPE and a FUTURE FOR YOU. Yes caps lock on as this is IMPORTANT FOR YOU TO REMEMBER ❤️❤️❤️❤️

    We are here for you but you must get your positivity back and enjoy your life.

    I hope,this comes across as positive and caring as I tried to write it

    Take care

    Clare xxx