Am I expecting/hoping for too much.?

Following a referall by my GP to the hospital they arranged a full torso CT scan and attempted (but abandoned) EBUS bronchoscopy.

After a fortnight of hearing nothing I visited my GP as he had requested an ultrasound on the lymph nodes in my neck and the doctor had offered to do a biopsy on them and promised to get them to my GP within the week.

My GP had the job of telling me that I have cancer in both lungs, lymph nodes of the neck and chest and possibly my uterus. He was not happy that the hospital had not been in touch with me with either a treatment plan (if possible) or at least some feedback. 

He has referred me to Gyneo for further investigation but I have still to hear anything at all from the hospital.

 Am I being unrealistic in expecting some kind of response from the hospital?.

I am someone who needs to know all the facts ....good, bad or downright ugly and then to prepare accordingly. 

Thankfully I have a very supportive family and friends but hate having to respond to their question "what are they going to do?"  with a vague "I don't know"

Is this the normal timescale for dealing with what appears to be a fairly aggressive cancer where I can see and feel new lymph glands popping up on my neck on a daily basis.

  • I have had a similar experience but phoned the relevant department and nurse attached to my specialist several times until they eventually started returning my calls and telling me what was going on.  It doesn't hurt to ask.  Good luck

  • Thank you Cosmic. I haven't been appointed an oncology specialist yet and have been ringing the secretary of the respiratory doctor that requested the CT scan, every other day and still no response.

    This all makes me feel that they cannot offer me any treatment but if that is the case I still want to know and a.s.a.p

    I am a very pragmatic oerson who deals with facts but it would really help to have them.

  • Hi anxious

    After reading comments by others on here it seems to me that cancer diagnosis and treatment seems to be a post code lottery. I cannot complain about the speed I was seen but I live in the area of a cancer specialist hospital.  I would have a word with your GP to see if they could chase things up. Also does the hospital have a MacMillan nurses dept perhaps they may be able to help.

  • Thank you for your reply River. 

    My GP has been brilliant and is also chasing the hospital for me.

    I also have the support of "Star Throwers" a local Cancer care charity who's doctor can talk me and my partner through the facts and offer support, for which I am eteternally grateful, but they can't offer chemo.

    The fact that everything seems to be moving very slowly (except the growth of the lymph nodes) makes me feel that i am a lost cause.

    I'm keeping everything crossed that i receive an appointment today

  • Hi,

    No you are not expecting too much. The hospital has a duty of care to you as a patient, which includes keeping you informed. That said, there are rules about not giving results (bad or good) over the phone and it could be that they planned to tell you in a face to face meeting but they are over-stretched and haven't been able to book you in for a meeting. My wife found herself in this position after having an MRI for a different type of problem. The consultant complained that six months had elapsed between the scan and her seeing him ... as if that was her fault! With cancer, you can't afford to hang around for weeks awaiting results - so pester the hospital (ask for the Medical Secretary of whoever treated you) and ask when your referral will come through. There are very strict cancer waiting targets which the hospital needs to comply with - these are Referral to Treatment targets and the clock doesn't stop until your treatment begins. Your GP will be aware of these and you could ask him or her to chase it up too. 

    For many years I worked within the NHS and frankly not enough patients formally complain when they have been treated badly or suffered from miscommunication. It is only when complaints are made that the hospital management are aware that there's an issue and can look into it to find out what went wrong and take steps to try to stop it happening again. 

    Good luck in sorting this out. Don't give up and keep making a noise until you have been treated, or have a date that you're happy with.
    Dave 

     

  • Thank you Davek

    I have thankfully received an appointment tomorrow to see the original respiratory Dr and I am praying he will be able to tell me who I will be seeing in Oncology and when. I am also seeing the gynocologist on Friday to establish what is going on in my uterus which I hope they can find out in one appointment and not make me wait even longer.

     

  • Hi anxious

    Can I give you a tip for when you see the oncologist?

    My experience is they often dont volunteer too much bad news like prognosis - I guess they work on the principle you can't untell somebody something. So look them in the eye and ask them straight and direct and they'll probably tell you as much as they know - some of it may be best guesses though so bear that in mind

    It's also often quite a lot of information in a short time so before you go write down all the questions you want answers for and go through them one by one at the meeting. Tell the doctors what you've told us about wanting all the details . Write them down because otherwise you *will* miss something.

     

    There can be some apalling cowardice about giving people bad news - the consultant that saw my wife got the results 5 minutes after seeing us and actually sent one of his students back after he'd moved on and we were leaving to tell us it was malignant - she was about 21 I guess and looked terrified. We already kind of knew but I was still pretty disgusted - should have registerred a complaint I guess but there you go

  • Thank you GrahamM.

    I really appreciate your tips. I have to admit my memory/concentration is terrible at the moment but I guess that's to be expected.

     

  • We've had this! My partner was admitted with jaundice and flu symptoms on the weds..following Monday was told had multiple tumours (4 or 5) then the weds after admission was told one also on brain...it took a further 2 weeks to say what stage/type.. So after 3 weeks of being admitted before we go any definite answers.... The answer being 3 months with chemo, 6 months with!!!! Feeling hopeless! I don't believe this is happening to someone who has never been Ill in his life

  • I'm so sorry to hear this Nicky. I hope you have a good support network around you. 

    As for my news it isn't much better. I have been told that the lung cancer is inoperable as it is too advanced and already spread to my lymph nodes but will be offered chemo. I am seeing the Oncologist on Wednesday so hope to find out more then.

    At least today I have been able to enjoy the best kind of medicine. My partner and I have been to the beach with our dogs.....I don't know of a better medicine for me.

    I hope all those on this forum can find their own "medicine" in something as simple