Prognosis

Hi and welcome to this corner of the Community.

The initial question you are asking is impossible for us to answer even for the experts will struggle with it as each case is so different, so I can understand that his team are being vague but yes, I asked the question when my condition became aggressive and got a relatively straight answer....... but it depends on what you do with that answer.

Back in late 2013 I was put in the position of making a choice of not having treatment may give me a few years but my other option was to go down the Stem Cell Transplant route, it’s a long journey (hit my name to see my story) but  being diagnosed in 1999 with a rather rare and difficult to treat Cutaneous T-Cell (skin) Non Hodgkin’s Lymphoma. I was told “Mike, I am sorry to tell you that this type of NHL is incurable, yes treatable but you will never be in remission”

After years of treatments in September 2016 I was told I was in remission for the first time in 17 years - and I am living the dream.

Sorry to hear of this seeming conundrum. "Prognosis" is a statistical construct for data keeping. It applies to patient groups and not to individuals. Individuals make up the composite that is used to form a prognosis. And prognosis is most useful in the allocation or resources and research funding. Individual cases can vary to the extreme depending upon one's biology, physiology, psychology, co-morbidities, cancer type, grade, stage, aggressiveness, the patient's will and determination and actually, many other factors. As you can see, an accurate estimate of any individual life span is impossible, in the practical sense.

Is he wary of treatment? I can state categorically that I was not and am not. Actually, I have been in constant treatment since 2008 and have received 20 different anti-cancer drugs at this point - at least four of them twice or more.  His desire to live for the sake of his loved ones can play a huge part in all of this. What is his mindset?    

Thank you, I have read your profile and can see you have had a very difficult journey. Unfortunately we too were originally told that his cancer is not curable but manageble  but that is no longer the case. We spoke with his consultant this morning who was in a position to give us true insight. If further chemo was done another 4 cycles would be necesssary for which my husband would need to be admitted to hospital so thats in hospital for 4 months (with a tiny chance of getting home for a short time in between) as the strength of the dose of chemo needed is so toxic and cumulatively the side effects would be worse each time. The outlook would be that it would be unrealistic to expect any kind of sustained positive reaction and meanwhile the risk of infection is so high that in all probability he would not survive the treatment. The alternative is not to have the chemo and stay at home with me and support when needed. His condition will deteriorate quickly and he will only have weeks at most. My husband does not want a long drawn out passing that will painful for us both, even so this is very painful for me but it is his choice and I will find the strength to support him in. Once we have had to begin to process this we will plan what our next steps will be, his main concern is that everything is in order so I will be looked after. As always he is putting me first. For others reading this please do not think this is the outcome for everyone. If I had to start over knowing we would face this I would still choose to be with my husband whom I love very much and he me. It is the strength of that love that will see us through. Thank you to all for your support on here.

Thank you for replying to my Post, please see my reply to Thehighlander and consider it also a reply to you. 

Hi again , sorry to hear the news you both have been given. The important thing now is to make a decision based on the advise given and move forward with no regrets.

Talking with others caring for family and friends will help a lot so do checkout our Carers only and supporting someone with incurable cancer Groups as you will connect with others walking the same journey supporting family and friends through their cancer journey.

It’s always good to talk and the Macmillan Support Services provides lots of information, support, financial guidance or just a listening ear.

Most services are open 8am to 8pm, 7 days a week and it's free to call on 0808 808 00 00 have a look by Clicking here to see what is available and we also have our Ask an Expert section, but do allow two working days for replies from our expert team.

((hugs))

The last prognosis I was assigned was "extremely poor" and that was 12 years ago as of next month. In the intervening years, it dropped twice more. I laughed, but I lived.

Thank you for your reply you are truly inspirational and couragous. After considering everything and talking thins through my husband has made his decision. He has decided against further treatment using the logic that he no longer has the strength to be so ill and in hospital for so long when there is no realistic chance of gaining a sustained period of remission. Instead he prefers to remain and receive palliative care at home with me. As painful as this is for me I respect his wishes. The three weeks he spent in hospital have been the longest we have been apart and the longest 3 weeks of my life. I know this is nothing compared to what is to come. I am grieving already and its heartbreaking to see him decline. However the good news, and yes there is good news, we are slowly coming to terms with it. We are achieving this by doing what we have always done through our relationship and marriage and that is communicating: talking and listening to one another. He has been given the opportunity to put his affairs in order, we hare our memories and what he hopes for my future. Our latest motto is no regrets.  We were and are very fortunate to have found one another and share such a deep love always putting one another first, . I have a friend whose partner died suddenly and they never got the chance to prepare or say goodbye so we are blessed in that way. When he bought me an eternity ring we sometimes joked about the wedding vows we took the part about till death do us part and I would say not anymore he cant get away from me that easy now, we are in it together for eternity. He will just have to keep my space on his cloud warm for me until is time for me to join him again.

No regrets is a good foundation to move this forward.

Do have a look at our Carers only and supporting someone with incurable cancer groups as you now move into uncharted waters so connecting with others who navigating the same journey will help you a lot.

((hugs))