Dr's not providing info on what to expect

Hi Annabelle, and a very warm welcome to our friendly little group, though I'm so sorry you find yourself here sweetheart, I'm further on in my journey, 5 years, being on end of life, cancer out of control and no treatment options. I also have 15 years in nursing and palliative care, firstly that's wonderful news your treatments working so well and pray it continues too for a long time, with hopefully more tools in the toolbox to follow. Annabelle regarding your prognosis, everyone on here ignores them as they're a guess based on old data and treatments, and living with an inaccurate countdown ticking in your head is no way to live my friend, and sure your team will have a  little idea of what may be ahead, but we're all different, our bodies respond differently to our cancers, therapies and medication, and our attitude to living with this awful disease makes a big difference as well, no one can give you an accurate timeline of what is to come especially with new/improved therapies and medicines becoming available, should you want to research, please stick to reputable sites, Macmillan, CRUK, NHS and Cervical cancer UK, theirs also Macmillans helpline and cervical cancer forum, and Maggies, but never Dr Google.I hope some of the guys post soon, maybe with 1st hand experience of Cervical cancer.

Eddie 

Hi

I've asked my oncos (2 of them) loads of questions about the future and they've always answered openly.  Here's a flavour of my Q and their Answers, what I can currently recall.

Q1:  It's going to come back or start growing, at some point, isn't it?  [I have incurable metastatic kidney cancer]

A1: Not necessarily.  

Q2:  What are the signs I need to look for, which would signify a Deterioration/new growth?   Is it like prior to the initial diagnosis when I felt fatigued/rubbish?

A2: Anything unusual or different is a reason to get in touch. 

Q3: What would we treat it with, if it became active again?

A3: The drug that has worked for me (nivolumab) and add a second immunology drug eg cabo.  

I haven't really thought about the questions in your last paragraph.  But I went from a <5 year prognosis to "indefinite" (my interpretation) due to the success of my treatment.  I have come to terms with the fact that something might happen that makes it short term, and there's nothing I can do about it.   I live in the moment, the current space, and I don't worry about "how long" or "what if?".

My cancer (renal) is slow growing, not quick.  So, I anticipate a heads-up when things start going downhill.  I read-the-room with my cancer, taking my status from the tone of conversations with my oncos.   I know the warning signs to look for -> my onco once said that when he has bad news, he always does it on a 1-2-1, not inviting in the student for training.  I'm sure when it goes downhill, I'll be feeling rubbish, or the weight will drop-off again.  It won't be a surprise.   

I was able to have these conversations because of the trusting relationships I was able to build with my oncos, over a couple of years.  You can't jump in with in-depth Qs at the start, they kind of evolve over time, as your brain starts to accept the concepts and the new "normal".  I'm always amazed at how my onco had so much time to answer my questions.  I was there for 45 mins sometimes.  He must have managed his appointments somehow, put me at the end, perhaps.  Perhaps he had the measure of me!!  But I think he enjoyed our chats. 

Hi Annabell1234 

I have to agree with Eddie when he says everyone is different. I have lost many family members to cancer, mainly breast or ovarian, and they were all different. I think the medical team are not telling you, because at this stage they really don’t know. I know it’s hard, but please try and spend your time thinking of living and not of how the ending may be, you will just drive yourself mad with worry . 

Hi Annabell1234 

I am sorry you have been diagnosed with metastatic ovarian cancer. I quite understand why you are searching for some certainty in a world where very little certainty exists. When I was first diagnosed with metastatic tnbc in 2022 I chose not to ask for a prognosis, because I knew that once I’d heard it, I wouldn’t be able to unhear it and it would be that ticking clock. That, of course, didn’t stop me from researching it online. I knew the data I found online was probably out of date as it wouldn’t include survivors of newer treatments. I also knew it couldn’t be specific to how I would respond to treatment, to the starting point extent of my spread, and to my underlying health. Based on the data I found then, I have passed my expiry date several times over. This because I did respond well to treatment. 

The good news is your cancer is responding well to treatment and you are tolerating the treatment. That’s a good basis for trying to enjoy the life you have now, rather than either mourning what you have lost or worrying about the future. As they have told you, they will keep you on the treatment as long as they can - which means until it stops working or you can’t tolerate it anymore. There are several of us on here who have had treatment, got benefit, and then entered a period of watch and wait without treatment. I am one of them - I have not had any evidence of cancer since early 2024 when I had a follow up procedure to my last immunotherapy/ chemotherapy treatment, so I have not needed treatment. I remain classed as incurable because it had spread to my liver, has been in my bloodstream, and could reappear at any time. These outcomes, anecdotally, seem to happen to some people with newer treatments. 

So stage 4 doesn’t mean a rapid descent to hospice or hospital for many of us. There will be plenty of time to think about that if and when your cancer stops responding to your then current treatment line and you have run out of further treatment lines. 

Thank you everyone for your kind and thoughtful comments. It is really helpful to hear from people who have experience of this.

I'm a planner by nature and definitely feel less worried when I have a better idea of what might happen even if that's lots of different things or unpleasant things! My head has definitely been a in a space where I've been grieving the possibility that something is 'the last time' I will get to do something. Mainly because I've just celebrated my 47th and my sons 16th birthday. Before that I felt I was doing well grabbing opportunities to enjoy life when I felt well enough to and live in the moment. I'm currently lucky that my good days are better than those pre diagnosis because of the treatment. It's all such an emotional rollercoaster!

Hi again Annabell, I believe most of us would agree with your comment, regarding talking to people travelling the same journey, and grieving the life we've lost is normal but it doesn't mean our new lives cannot be a life worth living, in some ways our situation brings a new focus and love/appreciation of how precious our time is and to make the most of it. I'm so glad your good days are the norm, a positive attitude will help greatly keeping that so, I'd be lying if I said I don't have dark days but these are normal and dare I say needed to stop us falling deeper. xx

Eddie 

Hi Annabell, good you found us and are willing to open up about the issues bothering you at the moment. It sounds like you are responding to your treatment well and that is good. On my journey there have been deteriorations followed by huge improvements. This roller coaster is normal and no doctor can predict a pattern. There are fortunately ways to deal with downturns and, surprisingly also upturns we dont expect but they happen. Get on with your life as best you can for now, worry later when you really need to

Hi Annabell1234 I, too, have metastatic cervical cancer. I am 51. It originally had spread to a pelvic lymph node (making it 3c) then after my original treatment to cure, found that it had spread to kidneys, hip bone and brain. Full details can be found in my profile.

The horrified look on my oncologist's face told me that this was bad - and I needed to know exactly how bad this was. By the end of the meeting they were filling in the SR1 form (for benefits). You only get this if you're not expected to live longer than a year. My life really was over.

Then I got to meet my new oncologist; a real treasure - I call him Mr doom and gloom. I had been given gamma knife for the six brain lesions, which seemed to have worked, so the new oncologist was talking through the palliative treatment I could have: paclitaxol and carboplatin x6, alongside pembrolizumbab and bevacizumbab. Part of me didn't really want any more treatment, and thought that maybe I would just rather go out with a bang - hopefully quickly. So I asked how much time I would have if I didn't have the treatment. 3-6 months was his response. And with the treatment?  Less than 50% chance of seeing out the year. I was veering towards not bothering, but then one of the CNS nurses phoned me up to say that I had a really good chance with the pembroli (she had been talking with a different oncologist). So I said I would start it. 

But I'm not sure what they make of me. I'm always asking about 'the end/the deterioration'. He will never give me an answer. Sometimes I think it's because he doesn't want to scare me, but then other times I think it's because he really doesn't know how it will pan out for me.  I guess it might depend on where exactly the mets start to rear their ugly head. 

What has made a huge difference to me is getting past the 1 year anniversary of this palliative treatment and outliving the initial horrific prognosis. During the past year, I really did hear the ticking of the clock very loudly and persistently, the feeling of being on death row, but now that I've got past that line my perspective really seems to have shifted. Maybe I will be around for another 6 months, even another year??  

Happy to chat x  

Thank you for sharing your story. 

I had a chemo on weds so I'm laid here dealing with all the side effects at the moment feeling rough.

I'm currently more emotionally stable than when I wrote the post. Moving further away from the birthdays has helped. I'm refocused on what I can plan to enjoy in the shorter term without being quite as caught up on 'lasts'.

SR1 form has just been sent off to sort out PIP.

It's so blooming hard isn't it - all the ups and downs. Side effects, emotions. Wishing you all the best with it x