What is the likely Treatment Plan for inoperable metastasised cancer?

Hi Harebellle   This is the NHS - I think your expectations are a tad unrealistic and your reasoning is running away from you, disproportionally so.  They are never going to leave you hanging and they don't have a lost cause categorisation.  Where you are hoping for a response in days, you need to substitute some contingency days as there's a lot of contention and pressure right now.   People wait for results in timescales of anything from 1-4+ weeks.  You only get results by return in A&E.  

Biopsy results - I waited a week for mine and you get them from the dept or consultant who need them to make the treatment options, so mine was Oncology.  Scan results - it's 2-3 results for these, because the radiographer has to write a report.  Again, these are communicated at your next oncology (?) appt.  My oncologist schedules in the meetings 2 weeks after scans.  

When I felt a bit desperate to know what was going on, I tried to think about NHS prioritisation, other people just being ahead of me in the queue, having waited just as long as me.  

Do you have an oncology receptionist or booking person?   In my experience these people pick up the phone (they may only work AM) and they can look you up on the system and advise where the blockage or the wait is.  Actually, in my experience, everyone in the hospital sitting at a PC can look you up on the system and advise when and where for appts (been lost a few times lol).  The secret is navigating who does what.  

Hi Harebellle,

My bone biopsy took several weeks to come back as the histology process is quite lenthy, so dont think they have forgotten you. Am sure the team will be taken you to a mulit disciplinary team meeting to discuss options, and obviously without all the info they can only make interim decisions.

it is hard waiting, but you will get answers eventually.

x

Hi Harebellle

I would tend to agree with the responses you have had in that you need to find an outlet for your frustration. Health professionals don't play God, each case is carefully considered at the multidisciplinary meeting, based upon the patients health, cancer type and other conditions. As for private health, the care is usually the same, the difference is the hospitality.

Take care and keep busy until your next apt/someone gets in touch.

Amanda x

Thanks for everyone's kind words and support.

Had a phone call earlier to say " we haven't forgotten you and you have an appointment  with the Oncologist next week"

I really don't want them to say howl long I have left..  I may want to know at some point,  but  am not ready yet.

Are they sensitive to this fact? Or do I need to say something as soon as I walk in?

A case of No Spoilers please!

So Glad uou have an appointment,  hopefullly they to discuss treatment. As for getting told how long I can't say as I wanted to no and asked. If the subject is heading that way just tell them you don't want to no. Good luck and sending big hugs. Take care XX

I'm with you on that one Harebellle I don't want a timescale. All oncologists are different, and most won't tell you unless you ask, but I do know of at least one person in the group who has been told a timescale although she did not want to know. I would mention as soon as possible just in case if I were you, just say you want to stay positive and know all about the treatments, but are not ready to know a timescale at this stage.  Good luck with the appointment next week.xx  

Have metastasised peritoneal cancer but not known if it’s come from my breast or womb cancer.  Was offered chemo but I and my oncologist were concerned about how my body would cooperate with the treatment second time round. Was given life expectancy which I’ve passed now. Was also told having chemo wouldn’t add much time to my life so I rejected it.  Each case is looked at individually I think.

You would be astounded at how much our oncologists don't know. They make an educated guess at your prognosis then a new treatment or trial comes along and their guesses are right out of the window. Probably most  people on here have sailed past their 'sell by date' .I asked and was told eight months to a year,,in 2017, think they failed their maths on that one.!

They won't tell you, they don't know, you have more chance of winning the lottery than them getting anywhere near close. 

Don't drive yourself mad worrying, all that happens is you lose your hair quicker than if you were on chemo! Your mindcwill gradually accept your situation and your medical team will continue to hunt for treatments and solutions. Best wishes Harebell. X

Great you have had a phone call and you know there is a meeting on the cards very soon.  FAB!   

Just to add diversity to the discussion,   I asked "how long have I got?"  twice!  Got the same answer both times LOL.  I'm still going for the  record survival rate, top responder and doctor's star pupil status .    I like to know where I stand.  I'm on immunotherapy, it's going well, so in retrospect the prognosis is probably just a guess based on 2015 data and Mrs Average.  

It was only after joining this forum that I learned and appreciated the stance of not asking.  

My view, entirely without any substantiation or rationale, is that Oncology won't offer this information unless asked directly.  Because most doctors have their head screwed on the right way huh?

Hi Harebellle, I'm firmly with the others on the whole "how long have I got left" conundrum. From what I have read on here and been told I don't think anyone can really call it. Someone much wiser than I said "believe the diagnosis but not the prognosis ".

11 months in I'm beginning to understand just how true that can be. The unknown is scary and navigating this cancer world takes a while to begin to comprehend, but the folks on this site have given alot of good info.

Hang in there, more understanding and knowing what the first plan is helps you to feel a little more in control. 

Good friends and family ground you when you feel yourself spinning... oh and chocolate x