Has anyone outlived their prognosis?

Greetings from North London!

I have recurrent endometrial cancer. My oncologist told me I might have two years...or it could be less. She told me this in December 2014.

Since then, I’ve been, well, kicking cancer’s butt. No, I’m not in a clinical trial––I haven’t heard about any but if I ever do, I’ll sign up in a flash. I had six rounds of chemotherapy in 2015. After I finished chemo I started on hormones, which have had further good effect––progesterone has been shrinking my cancer. At first the shrinkage was fairly large but now I’ve stabilised and the level of cancer in my body is extremely low. I see my oncologist or someone on her team every four months.

Covid-19 has put a crimp in my activities, of course, but my husband and I make sure we stay safe. Lockdown isn’t my idea of a good time but I’d feel pretty silly if I survived for this long only to have Coronavirus get me!

Hang in there, fellow-travellers, and Happy Holidays!

Hi Lynne_1961 and  welcome to the community although it would be lovely to have had the chance to meet elsewhere! You've had so many positive responses already, and I'm another one of the group who has done far better than expected. I was diagnosed with advanced metastatic breast cancer in 2018. A throw away remark to my Oncologist about a droopy eyelid led to a brain scan which revealed a large occipital bone tumour and a brain tumour, both inoperable. The outlook was very bleak but I had successful gamma knife surgery to both areas. Scans revealed tumours throughout my spine, ribs, pelvis and leg, I was incurable but treatable, and hormone therapy stabilised things for about 10 months, when the cancer progressed to my liver. Since then I've been on chemo, which stabilises things for a while, then the cancer finds a way round it, becomes active again and we try something else.

In Jan 2020 the cancer spread to my lungs, and the recent scans have shown that the brain and liver tumour are growing again. So, running out of options and each course of treatment has brought demiminshing returns but so much to live for!!

I was a nurse many moons ago, and in my day people with cancer (you could pick them out on the street, does anyone else remember that?) either died or recovered, there was nothing in between. Nowadays people live for many, many years with cancer some as a result of clinical trials, and things honestly are improving all the time.

After the initial bombshell when my Consultant didn't think anything could be offered he explained that I would be living with cancer, and they would keep me as well and stable as possible with various treatment options available. Since then I've been told my cancer is terminal and the treatment is palliative. In my case this is because cancer is likely to be the cause of my death within months. 

All that means is that statistically, people with a similar pattern die within a fairly short timeframe, but that doesn't nececessarily mean I will. 

The remarkable Daloni who was a community champion and a huge source of inspiration to many of us said if you are going down hill a bit year on year, your prognosis is measured in years. If there's a monthly decline it's measured in months and so on. But there's always the exceptions, the last minute clinical trial or unexpected remission. 

Apologies for the long post. 70 sounds good to me, I've just turned 63 and another few birthdays would be great!

xx

Thank you all for your encouraging stories! 

I have had the scan results and the cancer has returned, so will be going for more chemo in the new year. Although I have been told I have less than a year to go I am still determined to continue on and still be here the year after next, God willing!!

God Bless you all

Dawn xx

so very sorry to hear that. I'm glad that there is a plan and hope the chemo will do it's stuff with minimal side effects. A lot can change in a year and you have such positivity, I have every confidence we'll still be chatting this time next year. xx

Tinalay is absolutely right. She does make a habit of that! A plan is everything, as long as there is a plan there is hope. Everyone on here knows that, it is a mantra and a truism..

My oncologist said at my last consultation that I should prepare myself for my situation to change. He is not causing an upset, I have asked from the beginning to be told everything. I am not taking any notice of him though, I have too much to be getting on with!

I still intend to be here next year and I fully expect you and Tina to be here as well.

So there cancer, take that.!!!

Xxxxx

live each day to its full always u can beat this the Cancer can go FECK off gonna have to fight us harder than that it will have a wall bigger than china to get us hugs xxx and remember all we are in 2020 nd they always coming up with new treatments for this Evil Becker xxxx

Tinalay, Norberry & Donc - thank you so much! I am definitely not sitting back without a fight! I will tell you I was laughing so much yesterday. My husband and I wanted to take some selfies with the both of us and my husband was trying to work out the timer on the camera on his phone. Well I ended up laughing til the tears were running down my face when I saw a picture that had been taken without us realising it! The look on my husband's face just cracked me up!

I tried to insert the photo, but looks like I am unable to do so. I may actually use it as a profile pic 

Hugs to you all!! xxx

Dawn B

Hello Lynne_1961,

I suppose everyone who has been diagnosed with this horrendous illness must have at one time or another thought about their own prognosis. I suppose there is no right answer as it is all subjective. I have asked on a few occasions, even on the day I was diagnosed what my life expectancy was likely to be. I was told every time from different people, they did not know. To be honest, I have stopped asking now and just put my efforts into being positive & fighting for as long as possible with hopefully, a relatively good quality of life.

Take care, Tom

Sounds like a good end to a terrible year for you alsopkj, all things crossed for continuing good news. Bloody scans! Xx

Hi, I have recently been diagnosed with SCLC with nodes involved and Liver mets. I was told on my own and that it was incurable.  When I went to see the Oncologist to discuss a treatment plan I was allowed my husband with me. When the Consultant mentioned 'prognosis' my husband broke down so I shook my head to say 'leave it!'. My problem now is I need to know because I feel I should be planning my future around time. I have been really strong and seem to be supporting my husband at the moment, but would I be wrong to find out, or do you think if I did find out I would find it hard to keep from my husband. I've always been truthful?