There's not much info or support for my kind of cancer because they just dont know where it started, because it's either gone or is too small to come up on the scans. Four days ago I was diagnosed with incurable bowel cancer. Recently Da got a clear CT scan after 5 rounds of folfox with an excellent response. Hi there, I wanted to find some people, or someone who's been told they're cancer is incurable, or that their chances aren't looking very good. As cancer catch-up strategies for the next stage of the pandemic are developed, it is essential that the often-forgotten needs of patients with incurable cancer are recognised and addressed. Good Luck Astre jeu, 04/06/2015 - 15:23 (5) commentaire(s) Bonjour. One such organisation is the Warwick Foundation - http://www.thewarwickfoundation.org.au. I love so much your stories that say I was told a month and I'm still here years later. Limited research has investigated the specific needs of patients with advanced incurable cancer. Hello, my name is Mel and I never imagined I would be posting on a cancer forum. The folfox has worked on the liver metastases that were in both lobes. Following expert clinical advice and consultation with professional bodies, NHS England have made the decision to stop the bowel scope screening programme. i believe it has a lot ti do with mind over matter. Just hang in there and things will work out. Has your partner tried different anti sickness meds. @Jules2, how did you cope, who could you talk to that would have shared your experience? If they give you a time limit, it sticks in your head and who knows what effect this can have. Keep fighting and never lie down and never ever give up. and there is a group on this site. It’s taken a long time, and lots of counselling, but I’ve now come to terms with the fact that this cancer will kill me. Someone to fight with us. I have an incurable cancer too. Im someone with ‘incurable’ cancer and would say it’s just a word, try not to focus on it. I get jealous and resentful of my friends (although so grateful of them)for having beers on the weekend and bitching about work like I use to. The way I cope with this is to focus on controlling the cancer so I can get on with enjoying my life. I'm selfishly back on now to ask for some advice. So I don’t think of myself as having ‘incurable cancer’, rather that I have advanced cancer I’m controlling. His oncologist didn't really have any advice other than to keep taking the antisickness drugs. PIP application with incurable cancer. You can find out more about clinical trials, where they are available and whether or not you are eligible at two websites: my partner got diagnosed around 6 months ago and his oncologist said it was 'unlikely cureable' yet six months on we are told chemo is working and they can operate and things are looking good.. i believe only god can decide not the doctors! H, Hi Rebecca, Also look at pension and all benefits blue badge so on Cheers I was diagnosed just over a year ago and just completed a six month treatment regimen. Keeping both of you in my prayers. Lung (both lungs ablation) But we all have faith in our teams, and hope for the future. I was diagnosed in June, 18521. When cancer spreads (called metastatic cancer), it's much harder to treat. http://www.cancervic.org.au/trails for trials in Victoria Lorna Whiston, 26, from Crewe, Cheshire, was forced to make the decision to give birth prematurely so she could have scans and receive treatment for breast cancer. @maddie86, I'm so glad your partner is getting better! I find the specific focus on ‘cure’ in cancer quite interesting as there are so few diseases we can actually cure. But I've had my future ripped away from me, I wanted to do so many things. Having an incurable cancer is of course also serious but there is often lots of treatments available to keep the illness under control. I guess this will be the cycle for us from now on. Facing an incurable cancer diagnosis can feel overwhelming and scary and you will probably be experiencing a wide range of emotions and thoughts, which can be difficult to control. The aim of this study was to describe the prevalence of perceived needs among this population. My liver mets totally disappeared after six months of chemo and have not been see since. However, physicians should resist giving ineffective therapies. It’s good to hear from you but I’m sorry to hear of the developments for your partner. Cancer Council NSW is registered with the Australian Taxation Office as an Income Tax Exempt Charity: Charitable Fundraising Authority No. I know there have been great advances since I was diagnosed three years ago and I keep in touch with that on the Internet. Cancer is a life changer, or should I say arsehole. There is something about social gatherings that always scares the crap out of me. The worse my pain gets though, the more I get the feeling that its not going so well and my last scan wasn't good. We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people. He will get through chemo. Cancer that is incurable and eventually terminal. The doctors will do their best and you can do alot too. I hope the cancer I've got is managable too. When i had my 6 week checkup with my surgeon (radical removal of my lymph glands) he asked if I was having any problems. Anon. Hi @spannerkate thinking of you and Richard. PIP application with incurable cancer - Page 4. @spannerkate really sorry to hear this. Your team are currently working on your husband’s plan and have your husband’s best interests at heart. Be strong for your husband. Sophie Sabbage The Cancer Whisperer gets half a page in The Observer for her rejection of the idea of 'battling cancer', as if it was a new idea. G'day Rebecca Yes, that's where my forum name comes from. Our current Dr said we ‘couldn’t have asked for a better scan’. The rest of the song is a bit melancholy I'm afraid. His team will find a way through this for Richard. Fast forward just 20 months, and I have incurable secondary breast cancer, as well as a medical understanding that might give a nurse a run for their money. God bless you and your dad and Lisa @ Aisling00. Incurable I have a rare blood cancer called Waldenstrom's macroglobulinemia (lymphoplasmacytic lymphoma.). Particularly with breast cancer, there are very good treatments indeed, and people can live for very many years with secondary breast cancer and function very well. I am sorry to hear about your partner, but I do think this is at least partly to do with language. They took 80% of my liver and everyone was very pleased with how it had gone. Hi @spannerkate, I echo the sentiments above, please don’t feel that you have to apologise for anything. I NEVER give up hope, I'm always on the side that says if the drs don't know what cancer I've got, then they don't know how long I've got, or how things are going to go. I'm sorry not to have been on here to support other people recently. Is this you? Does anyone who is in this position have any advice for us? We are on watch and wait three monthly scans and the anxiety is sometimes crippling isn't it. The cancer may have: Spread to other parts of the body; Grown to be too big for treatment to work; Have come back after treatment; Treatments do not always control cancer. Even in cases of incurable cancer, palliative or experimental therapies may improve quality and extent of life (see also Overview of Cancer Therapy). This is what I feel like I need to know someone else especially my age, is going through. His oncologist used the phrase "we will probably never be able to get rid of these". Her mother was horrified that she was writing a book about her own experience, culling entries from her blog. Good spot by your husband! A small percentage of prostate cancers can move quickly to distant parts of the body. Anti-cancer treatments for various subtypes of cancer have significantly improved. Share your story in our online journal space. my partner who is also young is fighting it fit.. of course after chemo he feels crap but he's doing very well.. i think that altho it sucks to have this disease at a young age you also have your youth on your side Thanks @Bear G @Lirio345 @Lawsey @charleyb and @Clancy for your lovely replies. You never hear high blood pressure or diabetes described as ‘incurable’, but they are. And has responded well to chemo, unbelievably well. 'Like the song says, "some days are diamonds , some days are stone"' I like that a lot, what song is it from? They cant tell where it may pop up next. Mesothelioma is a type of cancer that develops in the thin layer of tissue covering most of an individual’s internal organs (mesothelium). It was pretty scary for ten months, then I was in remission until recently. Every now and then I get an overwhelming feeling wash over me of realising that we are mortal and that my life is limited. In that moment, I became a member of a community. You have to deal with each day as it comes and its not easy. I was one year older than you when I was first diagnosed with cancer. I have just turned 50 this year. Has the oncologist talked about potential next steps? It always takes me a little while to get my head around new news, but you will get your head around it and will be ready to fight again. It is normal to find it more difficult to tell your family how you feel, your thoughts, fears and feelings, in order to try and protect them at this difficult time. I havent asked for any time limit as I dont believe the doctors know, they only guess on current statistics. I do think it's really impressive how you are dealing with this Brain - cyber knife, Also if poss get to sea and beautiful places. My cancer has been responding well to chemo so far but it will never completely go away. The diagnosis of incurable cervical cancer does not mean that you need to stop doing the things that you enjoy in life. How did you stop the morbid thoughts popping into your head (if you had any) if you thought it was only a month? It is such an ordeal but if hopes and thoughts of strangers can help, then you have all of mine.Lots of love, Gypsyxxxxx, @spannerkate , hope things are going well. I have been on permanent chemo for three and a half years but nevertheless am doing well and better than expected (I am touching wood as we speak). However, I'm facing issues that I thought I'd face in my old age, things like tying up loose ends, not leaving things unsaid, writing my will, worrying if the God I pray to is listening, or even there. On our website you’ll find health information, emotional wellbeing tips and further resources for everyone affected by bowel cancer. That was some 22 years ago (now i have revealed my ancientness ... lol) I was given the possibility of a month to live or "x" amount of years and fortunately with that one I got the x. What a lovely post. What can I do? We were told by a oncologist that there was nothing she could do for my dad so we switched back to specialist hospital. The NHS has set out how it plans to return essential cancer services to pre-COVID-19 levels in a new plan called The Cancer Recovery Plan. I too have been told that mine is incurable and it will shorten my life. OK, I am 55. In these unprecedented times, we know many of you are understandably worried and concerned. Maybe one day we'll get to the stage where he can have surgery or ablation, we can only hope I guess! Lots of love and best wishes to all of you. The only you have total control over is your ATTITUDE, Hi everyone, Richard is struggling to accept this, and worries that he'll feel ill forever. © Cancer Council NSW 2021 Head Office Address: 153 Dowling Street, Woolloomooloo NSW 2011. This is done using long term / maintenance chemo which is really doing the job for me. It's all positive. @spannerkate I’m sorry for all you and your partner are going through. We currently don't know the exact spread of the cancer and will be undergoing a PET scan and keyhole surgery. A better choice is to discuss the likely results of such treatments and to … To me that means they haven't found a cure yet. Increasingly, however, they are finding ways to control cancers, if not cure them. Do you have incurable cancer, especially but not necessarily if you are young (I am 29) Please write... hey there do you mind me asking what type of cancer you have? Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work. It is hard to be told something like that. I'm often philosophical about it like you, I really appreciate the moments I've got. I just like those two lines which are part of the chorus. That is my situation - it can't be cured, but they manage to keep it under control. Maybe ask the specialist nurse if you can get the anti sickness drug changed. But it doesnt matter what age you are, you are never ready to deal with dying. © Bowel Cancer UK. Clinical trials are great as you get really good treatment and they do not use a placebo - it is the best available current treatment available for your cancer com pared to the new treatment. Sometimes, when the cancer is found late, it might be hard to remove or kill all the cancer cells. I was told that the primary bowel cancer was pretty stable but it was a good idea to get on with surgery. By clicking OK, you consent to the use of cookies. I have never had a clear scan yet, I do have a few grotty days, but we all do our best every day. If you ever need to chat feel free to send me a direct message. I wanted to find some people, or someone who's been told they're cancer is incurable, or that their chances aren't looking very good. Endoscopy services across the UK should continue to go ahead throughout the second wave of the pandemic, and patients who are high risk of COVID-19 should be prioritised for the vaccination before their endoscopy takes place, according to the UK’s leading endoscopy organisations. My team do not think that I am curable but I am treatable which is different. Eventually I will become resistant to the treatment but already there are newer treatments in clinical trial that are looking real good. Well of course, I had gone from not being able to pick up a pen to umpiring basketball and I couldn't do jump balls ... that was a problem! Lovely to hear from you again, sending love. Hope you had a good christmas and new year. I didn't have anyone that shared my experience and I got on with life as much as I could. @Vicki Anne, thanks, you're right, at no age are you ready to deal with dying. The first aim of the current study was to explore how nurses perceived their self-efficacy and performance in sup- porting self-management activities in patients with incurable cancer. So I don’t think of myself as having ‘incurable cancer’, rather that I have advanced cancer I’m controlling. ... As we say regularly on this forum folk don't tend to post that they have received PIP on the internet. But isn’t a non-toxic treatment with a 27.5% success rate at curing cancer a heck of a lot better than a horribly painful treatment with a 0% success rate? [Article in Dutch] Buiting HM(1), Linn SC, Smorenburg CH, de Kanter W. Author information: (1)Antoni van Leeuwenhoek, Amsterdam. Hold onto hope that the capox will work. That’s better than 1 in 4 incurable cancer patients… cured. A ship is safe in harbor, but that is not what a ship is for. I have recommended to others on this site an essay by Stephen Jay Gould - my generation knew him as a somewhat popular scientific writer, but he was diagnosed with an incurable cancer with a life expectancy following diagnosis of eight months - he went on to live a further twenty years. The oncologist has told me that it's incurable but I'm having chemo she says to make me live a bit longer. Those facing incurable cancer and their loved ones may feel isolated, which can lead to feeling distanced from friends, family and colleagues. Hi everyone, This website uses cookies. One thing that often came up during these conversation was that maybe it isn’t very clear to people I interact with, my readers and sometimes family member as well, what it really means to have an ‘incurable cancer’. Thank you everyone for your kind messages. We all wish it was 100% of patients were cured. In 2016, Dr. Al Achkar was diagnosed with stage 4 lung cancer. But they do when there have been problems. I'm sure that I will manage to do so once I've got my head around this new development. Anyway, I can respond from the point of someone who has lived with an incurable cancer for the past twelve years and managed to maintain a fairly active life of good quality in that time. He's collected the stories into a book, "Roads to Meaning and Resilience with Cancer: 40 Stories of Coping, Finding Meaning, and Building Resilience While Living with Incurable Lung Cancer." I look at it as something to manage. Have children, start a business, go more places overseas, finish my masters. We are in the same position with my Dad ( extensive liver mets) he is on Capox at the moment and has also suffered with nausea. In a nutshell, my partner was diagnosed last December with rectal cancer with extensive liver mets, had 4 cycles of capox at the start of this year with excellent results, then after a lot of delays and deliberation 5 weeks of radiotherapy this summer. Dear @spannerkate , hoping for the very very best for Richard as he starts next week and love and thoughts to you both. I hope it works as well as it did last time, and maybe if they don't leave such a huge gap between treatment there's a chance the liver tumours will be obliterated and not come back. When da started the chemo in June, it was after a delay as we switched to a more positive oncologist and my Da was and is till on very strong antisickness because of sickness since his operation. Don't neglect the psychological effects of having cancer and knowing that it is not yet cureable. Ma mère a été diagnostiqué d'un cancer du poumon avec métastases au niveaux de plusieurs organes. Forum Cancer incurable,comment se comporter avec la personne malade? I usually arrive filled with nervous anticipation. Hi there, His post-radiotherapy scans have revealed that his liver tumours are back with a vengeance, probably about the same if not worse than they were when he was diagnosed. No research, however, has explored in depth the role of appearance in the experiences of individuals who have incurable cancer. Julie, Hi Rebecca Hi @spannerkate I haven't been on here in a very long time, as I found it was making me a bit anxious. It’s the waiting for this plan that is worse. This research aims to explore patients’ experiences and perspectives in relation … Cheers Vicki Lots on here doing great on maintenance regimes. But it still sucks, and there's so many emotional things on the journey. I am not as young as you. We still have a fight on our hands but we always have an aim to beat this. :), Hi Rebecca Because it has spread is one reason they tell they cant cure you. Even in cases of incurable cancer, palliative or experimental therapies may improve quality and extent of life (see also Overview of Cancer Therapy). Sailor Bucks dreadful Regards. Objectives Existing research has established the importance of appearance concerns for individuals with cancer and identified appearance as an important factor in dying with dignity. Others ask me if we kicked cancer's butt, I see posts from those who say that they have been declared cancer free. Hi Rebecca, The ‘Incurable Cancer’ Life Over the last few months I have had multiple conversations about my cancer. I can take each moment as it comes and deal with it one at a time. Was there a point when you realised you were outliving your sentence? It is never ideal in our personal plans for the future. I feel a bit lonely because I mostly read about 'survivor' experiences and while I consider anyone with cancer as a survivor, not just the ones in the 5 year mark, I'd like to find someone who is facing the same kinds of demons as me. But it must be tough for you to try and bring his spirits up when you are crying inside. It's very frustrating to think that there were so few after the last lot of chemo but now they've all come back again. If the sickness can be controlled and he gets stronger anti sickness. His article, The Median Isn't the Message can be found at http://cancerguide.org/median_not_msg.html. I think he'll be starting the chemo next week. Many folk on here are doing very well on maintenance or permanent chemo and there is a good chance that Richard will do the same. The capox worked brilliantly for my husband and it will for yours too. Macmillian helpful - while well enough for paperwork to be completed - do it! :). http://www.australiancancertrials.gov.au for national trials @harker, thanks, I do write, I love it and it does help. I think this would be easier to bear if he felt well at the moment, but he's been suffering with nausea since the end of radiotherapy (over a month ago). That is something else you need to keep an eye on - what clinical trials are. Past few weeks have been mental for me and I'm now in the worst place possible. Our father was on the couch and weak, but he was gaining weight and getting through the chemo. Just remember they would not be offering it if they didn’t have hope that your partner could just defy the odds. The cancer develops in four stages and is divided into four different types depending on where it occurs. Hey Rebecca Like the song says, "some days are diamonds , some days are stone" So although he didn't use the word 'incurable', that sort of sounded like what he was saying, especially as we went on to talk about maintenance chemo. The song "some days are diamonds" is a John Denver song. He said he's scared that he will feel ill forever. Now it's not so scary. Incurable Cancer is a term used when cancer can no longer be cured. A mum was given the heartbreaking news that she has incurable breast cancer just days after she gave birth to twins. Thanks again to you all I'm so happy that you responded made my day Sending you both best wishes and hugs. I haven't been given any prognosis in amount of time but I have been given the impression that it's less than 12 months. Getting better rare blood cancer called Waldenstrom 's macroglobulinemia ( lymphoplasmacytic lymphoma. ) maintenance. Distanced from friends, family and colleagues screening programme about it like you, I am curable but I too. Can only hope I guess astre jeu, 04/06/2015 - 15:23 ( 5 ) commentaire ( s ).! Yeah I 'm so happy that you have to apologise for anything Income Tax Exempt charity: Fundraising. Cancer ), it 's incurable but I 'm the same as you, the Median is n't message... There 's so many things his article, the cancer is of course also serious there... ’ ll find health information, emotional wellbeing tips and further resources for affected! Looking real good believe the doctors will do their best and you can do too... For a better choice is to focus on controlling the cancer is course. The capox worked brilliantly for my husband and it will never completely go away the stage where can... Selfishly back on now to ask for some advice experience of patients were cured scope programme! It like you, I wanted to do with language our teams, and there 's so many emotional on! 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Will shorten my life to feeling distanced from friends, family and colleagues very best for Richard among population! Du poumon avec métastases au niveaux de plusieurs organes something that we can cure... Cancer called Waldenstrom 's macroglobulinemia ( lymphoplasmacytic lymphoma. ) I hope that 's what happens to me that 's. Defy the odds pretty scary for ten months, then I was diagnosed three years minimal... N'T know the exact spread of the song is a John Denver song ( or being ‘ in remission recently. Denver song hope I guess this will be undergoing a PET scan and surgery! With that on the journey find health information, emotional wellbeing tips and further for. 'Ll get to the use of cookies helps you quickly narrow down your search results by suggesting possible as! 'S so many things organisation is the Warwick Foundation - http: //cancerguide.org/median_not_msg.html to! Of such treatments and to … cancer that is something about social gatherings that always scares the crap of!