Dr's not providing info on what to expect

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I'm new here. Thank you for letting me join the group. I have metastatic cervical cancer. It's currently in my liver and a tumour in my pelvis. This is my 4th time being treated for cancer and this time I'm on palliative chemo and targeted therapy with an estimated life expectancy of 18 months when I was diagnosed in Feb.

I'm struggling because I can't seem to get a straight answer out of the Dr's or Nurses about what to expect when my health starts to deteriorate. All they have said is not to worry and they will help manage any pain I have.

I'm currently on chemo (cisplatin and paxitacol) along with targeted therapy (bevacizumab). The last scan showed it has reduced the masses for now so I currently feel pretty good when I've got over the first week of chemo side effects each cycle. They've said they will keep tweaking it and keep me on chemo as long as possible and the Beva indefinitely.

So I can picture end of life in a hospice or hospital but what does the bit in-between look like? Presumably the cancer comes back again and spreads other places? Do people deteriorate slowly or quickly? I guess it can vary a lot but I just want a rough idea of what to expect and no one is telling me. Can anyone help? Thank you.

eddiel 13 hours ago

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

Mmum 11 hours ago

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.