Has anyone asked their oncologist not to give them a prognosis? I am leery of the statistics and wondering if it would be helpful to hear.

[Teamteal2020]

Prognosis question

[Katmal-UK]

Hi I'd loved to have had the opportunity to do so but it was just thrown at me. Having said that I did ask not to be told the stage etc, though to be honest I could work it out myself what with my mum having had OC. I personally am a 'OK so I have cancer, I don't need to know the ins and outs, I'll deal with it, tell me what I can do'. From a prognosis of 'a couple of years' here I am 13 years next month from diagnosis, currently 7 years 1 month in remission despite 2 recurrences I feel I am in control. I don't look at stats, I find they are out of date and to be honest I am not a statistic, I am me, an individual. Boy, am I am individual lol. I say do what works for you, some people like to know every nuance and that works for them. We are all different, all individual. Just my thoughts...... Best Wishes, Big Hug, Kathy xx

[Teamteal2020 in reply to Katmal-UK]

I totally agree. Even if I am told, I feel strong enough to beat the odds. I am so happy you have done just that. Thank you and keep enjoying life.,

[Katmal-UK in reply to Teamteal2020]

I hope you can tell whoever not to tell you and have that put on yr notes because once you are told you cant 'unhear' it. xx

[Lizzieanne in reply to Teamteal2020]

Agree with the others my recurrence after 18 years. Some doctor floated pass the end of bed and said no operation palliative care. Thought that meant I had a couple of months. He wasnt a gynae dr. So other than chemo making me feel rough i felt well so I dont want to be told as it would be on my mind and I would be thinking I feel fine but I have only got xxxx amount of time left. When you see posts on here many ladies have really surpassed what time was suggested.

[Lyndy]

I have never asked for one and they have never told me. Diagnosed stage 4 in 2015, my guess is that it would have been 2 years but I had nearly 5 years remission before it came back. So I am glad I didn’t ask...

[Everhope in reply to Lyndy]

I absolutely agree with you - my wish also. My daughter used to ask for CA125 count after each chemo cycle & I told her I did not want to know until the end of the chemo. Fortunately the results were good. Your experience reinforces my opinion for me. Thank you!

[CharlotteSo_UK]

Hi. I don’t remember asking when my mum was diagnosed in Nov 2010 but the CNS told us possibly 6 months. Whilst we know Mum’s is incurable, the cancer is currently stable and she is doing really well. Stats are historic and do not reflect current drugs available. Personally, I wish I had never heard what she said. Xx

[Lewisriley47]

Hi l have never been told and neither have l asked about a prognosis. I was diagnosed 8 years ago stage 4 a few recurrences along the way but thankfully still here x

[Kkaren]

Me too! Never asked and don’t want to know. My brain cannot cope so my consultant and I have an understanding- she only tells me what I need to know. My husband on the other hand wants to know numbers etc so each time I leave the room and they have a conversation! It works for us.

[Doglover1410]

I’ve never asked and he’s never offered and I’m happy with that! I only found out it was 3c when a stand in blurted it out and was generally horrible!! In fact my man called me 2days later when he was back to apologise for her attitude!

We seem to have slotted into a comfortable not knowing situation and that suits me just fine!! x

[Caleda4]

I have never asked, but my Oncologist did say prior to the chemo I am on now that my age is a factor. I am 75 but in good health other than this cancer which is my first recurrence after nearly 5 years free of it. For me I tend to live each day as it comes as I have always been active and determined.

Caleda x

[Hidden]

personally I don't want to know as unless they have a crystal ball they are only guessing.

We are not given a "best before" or "use by" date when we are born, I really can't imagine trying to go through life knowing your end date cancer or no cancer, I think I would be in a constant state of anxiety.

I understand that some people prefer to know, but so often we hear " I was given 6 months but am still here, x amount of years later" you have to decide what is best for you.

Good Luck x

[IrishMollyO]

Hi there

When I met my Oncologist for the first time in 2011 i immediately requested not to be given a prognosis

He did respect my wishes so I was able to get through my first successful treatment and was NED for almost 5 years

I think I eventually consulted Dr Google but by then I had already long passed my sell by date and it had no power to upset me

I do think that not knowing helped me be more positive

My story is too long to repeat but if you want a synopsis have a look at my profile

I haven’t added the latest installment yet as my last scan and CA 125 indicates yet more chemo in the near future

My best wishes go with you for the future

💚❤️

[Barlow1951]

Statistics are years out of date and as someone else has pointed out: “I am not a statistic, but an individual person!” I was never given a prognosis, just told that the disease was incurable but these days managed like a chronic disease with periods of remission and recurrences. Since finishing my initial chemo in April 2016, I have been NED, despite the expectations of my team that I would be likely to recur within 2 years!

Just keep going however suits you best in your current situation.

All the best, Barbara xx

[rosebine]

I know mine is terminal but Ive never actually asked how long. Assume it wont be very long as havent been given option of surgery as tumour is v.large and probably too enmeshed with other organs. I am a pessimist and dont know if this is actually a plus in this situation as you expect the worst but if theres some light you appreciate it more !

[Seadream]

I specifically said I do not want to hear anything stage related. It puts you in a box and gives you a label I was not interested in having. If by prognosis, you mean time left on earth, that is totally just the opinion of the person you are asking. We are all going to die, that’s part of life! When my aunt was diagnosed with ovarian cancer 18 years ago, I asked and the doctor said she had 6 months. I never told her what he said because she never asked and she lived another 17 years and died at 93 of old age.

Miracles happen every day.

[Natsmb in reply to Seadream]

That's a very encouraging story! There are really, really tough days where I've eaten something that just trashes my body. (The immunotherapy chemo that I was on created a huge metabolization problem for me and I have some very horrible reactions to certain things that I eat now. (I compared it to one of the worst hangovers I ever had during my carefree, less mature days of having fun!) On those days, I wonder if I'm going to die, and then there are better days and I really think whatever keeps me positive is what's best. For some people I know that they really like to make sure all their ducks are in a row. I actually had a friend who planned her funeral specifically with her friends in mind. The music, what was read, what was shared, everything. I believe that really comforted her so I appreciated her input but I still don't want to know.

[Ruebacelle]

Well this is personal but the problem w prognosis is that each person is different how we respond to the protocols and the science changes so i dont think prognoses are useful

[Natsmb in reply to Ruebacelle]

Yes. I kind of feel the same way. Just because it happened to one person does not mean it will happen to me. I like your perspective.

[Mommoo65]

I never asked and he never told. I like it that way.

[DouglasPouch]

I’m glad you raised this as it’s something I’m struggling with too. I have asked my Oncologist if she thinks I will live more than 12 months (probably) because I want to sort out things like finances before I die to make it easier for my family. I also want to be open with my kids (9 and 11) about the nature of my illness. All the evidence suggests this is best for them. It’s a tricky path to tread but I want to use the time I have in part to prepare myself and others. I don’t have the BRCA gene and I know this means my prognosis is worse (though I’m glad for my daughter). Good luck with your journey on this. Jane x

[Natsmb]

I specifically asked my oncologist not to give me a prognosis or details about things to expect. I only asked for a few specifics after I stopped treatment and only because I needed to be prepared for what might be related to cancer versus what might be something completely unrelated. Still haven't been open to getting specifics.

There was this very sweet movie on Netflix called The Farewell about a grandmother with lung cancer but her family chose not to tell her because they did not want her to be upset and actually convinced herself she was dying. It was based on a true story and the lady is still alive. And I figured, I don't need to know the details. I'm not in control anyway and when it's my time to go, it's my time to go. I don't need to be focusing on that. For me that works. I know it doesn't work for everyone but for me that works.