Can my treatment be reviewed independently?

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Hello! Please help! I feel utterly lost. Always a different unknown junior doctor and seen once every three months I was told I am treated by a "oncology team". I don't see the same face twice. Once every three months or 4 hours a year! There is no way to build a doctor-patient rapport on that basis. I was told that the "team" has much more expertise, the sum total of its components. But I feel bereft of a proper doctor-patient contact. I have a primary breast cancer, with metastarstic bones lesions spread to other bones, but not lungs or liver. It is stage 4 and terminal. I am on palliative care.

My "TEAM" decides behind closed doors. At the time of diagnostic, it ordered CT scans for my thorax and my pelvis, but not for my head, my neck, or my long bones. Why? I relied on their expertise, I didn't feel confident to challenge, not right at the time of the terrible diagnostic. 

During my last oncology appointment I was told that I am "stable". My husband who comes in to support me and to learn first hand what is happening, gets his support from that one word, "stable". We have rows after each oncologist appointment. I don't feel I am "stable". I stay in bed a lot. I can't walk far. I feel unwell. How can I be "stable" and need cement to be injected in my lower spine (vertabrae)? 

How "stable" is a patient, whose latest results from A&E (I fell down stairs 2 weeks ago resulting in a blow out fracture of my eye orbit), whose new CT scans ordered by the A&E doctors show lesions to the neck? TWO LESIONS ON MY NECK and NOT DETECTED BY MY ONCOLOGY TEAM BECAUSE IT DID NOT FIND IT NEVESSARY TO HAVE A SCAN OF ALL MY BONES? How can I ever trust them, What should, what can I do?

Can I get my treatment reviewed independently? 

Why did the "TEAM" not order back in June, after the biopsy, a CT scan of all by bones? Including neck and head perhaps? The acute fracture clinic doctor ordered 16 x-rays of long bones and hands and feet on our first meeting. I feel abandoned, not counting, not important, aged 74, female, ethnic minority, with a London university degree (no English language barrier) but yes, one doctor keeps adressing my male, white, husband with no eye contact with me In that NHS London teaching hospital,  

I was diagnosed in June 2023 with metastatic bones cancer, spread to sternum, pelvis, lesions on right arm. My primary breast cancer (February 2015) was treated with removal of the cancer lump, chemotherapy and radiotherapy, then tablet for 5 years. I was on Cibociclib but this was "suspended" (against my request). I was told it was because of the SONIA report. Umm. £200,000 economised by patient?  I am only on Letrozole, and I get Xgeva injections every 4 weeks. Calcium vitamin D and morphine. Proposed cement injevtion to consolidate the lower spine. 

Sorry, this is very long. I was far more upset than I thought. 

  • Hi Minou, Sorry you are having problems like this! You have every right to ask for a second opinion and also if you feel it necessary a change of oncologist or Team.

    I am very fortunate I have had the same oncologist for ten years now and have only spoken with her "understudy" when she has been on holiday. However one morning I awoke to find I could not see properly, phoned my GP and was referred to the emergency eye clinic. After waiting 3 hours, The doctor I saw introduced himself as the professor's Registrar. I went a further three times, seeing someone different each time, but this time as the Registrar opened the door the prof was passing and stopped to talk to him. They discussed me, at the door as if I wasn't there! I said "Excuse me Professor I am here could you speak to me please?" He looked through me then walked away! I wrote to the Director of The Hospital, said I wanted a change of Consultant, told him the reason. I got a phone call saying if I wanted a different Consultant I would have to go to a different hospital, as at that hospital the Consultant I was seeing was Head of his field. I said the problem was I actually wasn't seeing him and would gladly change hospitals.

    The first thing my new Consultant did after introducing himself was send me for an eye scan, as I had not had one before. It turned out I had been treated for "inflammation of the eye" when in actual fact it was a Melanoma in my eye!
    You have to do what you think is right for you. I think you have to have trust in your Consultant! You have enough to worry about, without this.        Good luck.

    Love Annette x

    Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!
  • Thank you, Annette. I am getting much love from my family but not much support, every bit of support to give me such Dutch courage, because my family believe in the NHS, and don't hear me, their wife, their mother. I have rows rather than support if I mention anything about those doctors, some not very nice, I see only once. Even after my TEAM failed to ask for neck and head CT scans, and I have lesions, and they didn't contact me back, my family staunchly held for the NHS. I told the TEAM, no one spoke to me about the two new discovered lesions, deafening silence!

    I asked for a care plan. Did I get it? No. Just Summaries, hastily typed, written during the one hour allocated to me four times a year. Do my new lesions can wait to the Spring, to March, my next oncology appointment. The TEAM, buzz buzz buzz, will discuss my case a few days before one of them, will be designated to tell me the TEAM decision. 

    It takes energy and hope, and when you know you have been ignored, treated badly, even shouted at by the receptionist after waiting for hours on end, disrespected, shouted at for taking the wrong door to my Xgeva injection, well, I am deflated. I am afraid. I can't sleep. I feel abandoned. I am abandoned. 

    Years ago, I used to be someone, respected within the NHS. It is so ironical. Now? I feel about as respected as a number from a cohort, which might become significant when some research paper is published to advance some junior doctor's career.

    There is no other hospital for me, Annette.

    I have gone through another cluster of London hospitals (14 underground stops and a 15 minutes walk, or £42 taxi journey one way due to traffic jams) with my initial breast cancer. it was bad. The surgeon operated to take my portacath when my immunity was so low, I was borderline with a hospital admission. I knew it too. After that, I asked to be moved to the hospital where I am treated now. It was fantastic. That was before their new system, the team, was introduced. I am resigned. I can't go anywhere else. Sometimes I think the only somewhere else is in Switzerland. At the moment, I can only take public transport for short journeys, because since falling downstairs flat on my face and breaking one of the five ocular bones, I am not very confident. I can see with one eye, the other eye is not quite right, and I don't dare to put my contact lense on that eye, with the broken socket (which apparently will self-heal). I got discharged from everything relating to my fall. Reassuring? Or not? I was told one socket is now deeper. 

    As for changing my oncology TEAM, I think that the hospital functions on a unique system, A systemic failure? Even if I try to ask to change Consultant, I would be put to another TEAM with exactly the same line up of different and indifferent junior doctors. Time to beg? Time to bargain? I know, I am withdrawing. Ran out of juice, had a big fall, met with total indifference although bad news, my neck has lesions too. Little old Chinese (I am not Chinese) lady, not even called by her name, because why bother to say my name for one brief encounter? One junior doctor used the word "excited", telling me of my new lower back lesions, how "excited" she was, first time for her? I wasn't nearly as excited as her. I not excited by two more lesions on my neck. That is the reality of not been seen by the same person. I would prefer AI. AI would call me by my name. 

    i did fall from a height of three steps, hard and directly on my face. It was a miracle that I am not dead, or paralysed, or lost one eye, or two. It is a miracle that I ended up with only one broken eye socket bone, which apparently will self-heal. 

    The ambulance paramefic told me, on the day of my fall, that the junior doctors strike might be a godsend for patients. "you will be seen by consultants. Someone with years of practice and experience. It will cut "hesitations" as he put it. In my case the A&E Consultant ordered two CT scans, and accidentally new bones lesions were found, but even with something as dramatic as that, total silence from the TEAM. They might be working hard, but I won't know, would I?

    The DS1500 was signed by my GP, meaning she thought I was at risk of dying within a year. Not exactly reassuring, I can get Attendance Allowance, that helps pay for the Uber rides. This is how I get my cancer news, each time a jolt, but according to my support team, my own family, the NHS can't do wrong. So I don't speak to them about it, they bat for the other side. 

    It is 05:44am, I slept three hours, this of now often. I will try to tell the next person from the TEAM, someone I have not met yet and will never meet again, about my neck lesions. This time in writing. I rang the oncology senior nurse after My fall - and what happened? A deafening silence. The nurse was cheerful, but i haven't heard from my Consultant or from her TEAM. 

    My neck lesions? Ignored. I am aware that  untreated, the lesions could lead to double incontinence, paralysis, more pain, unbearable pain, or death. What more needs to happen before I meet in person my Consultant? I don't count, nothing count. I am stuck. 

    One of my best friends has given me the address of a private hospital, where I can get a GP referral and a CT/MRI for a reasonable fixed price. But then, I will still need someone to interprete the MRI or CT, and I cant afford to go private to treat a terminal cancer!  Another friend said he knew a lawyer for medical negligence.

    Please keep telling me it is different elsewhere, to give me the courage not to give up, not to accept, and not to contact Dignitas. There. I wrote it. I am far from terminal, I don't feel terminal, but each indifference brings me nearer. The pain has lessened with radiotherapy (I have to suggest and insist through two junior doctors and my only 10 minutes phone appointment with my Consultant, that half my yearly allocation of appointment time)  and the pain has lessened with the Xgeva injections. These injections meant running the gauntlet and being shouted at for using the "wrong door" by a nurse. To get Xgeva was also a nightmare. I didn't get any letter, text, email nothing with the place and name of where the injection would take place.The oncology nurse from my oncology TEAM rang me to tell me the date and time.  I knocked at the wrong door, for the right place.

    Thank you to support me to get through this. I will ask my husband to draft something about getting an independent review, given the change of circumstances. I won't tell him how I feel. 

    Thank you for your support, anyone who think we have it good in London, believe me, I don't. 

  • My apology Anndanv, my spell check must have reverted to French and changed your name to Annette. 

  • Hi Minou, No need to apologise for calling me Annette as that is my name! My username is anndan so either will do!

    I was very sad to read your family aren't as supportive as they should be! I do think you need to talk to so eone about how you are feeling at the moment! Do you get on wel, with your GP? It might be worthwhile asking him for a referral to see a Counsellor, then you can e plain to him/her how you feel. Then you would have someone in your  corner, as you put it. Or why not call the Helpline on this website 0808 808 00 00 as i think you need to speak to someone professional before they get any worse. Also your GP may know of a other Consultant at the hospital you attend that you could see for a second opinion. After all your GP is ultimately responsible for your care!

    I am sure there are others here who attend London Hospitals and i hope they will contribute to this post.

    I live in Scotland and things can be different in other areas. I have heard others complain of not seeing their actual Consultant, so i do hope they respond to this and let us know how they got on. I would also like you to know, i would never raise my voi e or shoug at an NHS member of staff as firstly it doesnt get you anywhere, secondly they will describe you as hysterical and lastly it is rude!

    Please do not give up as life is worth fighting for! I dont think the Private route is going to work if it is too  expensive to continue with it! Please keep in touch.

    Love Annette x

    Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!
  • Unfortunately here, in London, we don't chose our GP. I see someone different each time, I don't even know if the person I see is medically qualified! On top, there is a lack of face to face appointment (6 minutes, 10 minutes total with the GP reading my notes on computer and writing something on it),

    Already in February 2023 I had pains in my bones (shoulder and ribs). The GP said it was probably costocondritis without seeing me, over the phone (always that awful "phone appointment"). I paid for acupuncture to lessen the pain. By April, there was a visible lump on my thorax. 

    But it started long before.

    On 21 November 2021, after covid, I managed to be referred to the breast clinic after finding a lump near where I had the lumpectomy. After the mammogram and manual check, the breast clinic Consultant, said, not all kindly as if Iwas a time waster "it's bone, it's only bone"! You don't have cancer. I still have the Summary notes as evidence. 

    Forward to November 2023, two years later. I still don't have a recurrence of breast cancer. There is no cancer in either breast. I didn't know that I could be "free of cancer in the breast", and that the breast cancer could seed elsewhere. Bones metastases. Even In June 2023 I was told by the breast clinic consultant "CT scans of the thorax, just to rule out cancer" and "cancer unlikely".  

    On the day of my biopsy, I was told that my biopsy was cancelled. I sat there numbed. My husband went to beg a nurse, we are down to begging in the capital. The nurse went on begging, approaching each doctor on that floor if s/he would do a guided biopsy for me. Miraculously one female doctor agreed, on condition that I accepted to be discharged without occupying a day bed and without monitoring. I accepted. I ended up with three biopsies.

    The hospital wanted to give the result, a terminal cancer biopsies results, over the phone, having cancelled yet another appointment. My husband rebelled. I was told face to face by a doctor O never met again. The nurse was the same one I rang recently after my fall, she is part of the TEAM. She wasn't there but her colleague rang back. Then a great nothing happens. 

    I have long ago accepted that I have cancer and that it is incurable. Everything is too late. Perhaps back in November 2021? But I worry about breaking my spine, double incontinence and paralysis - and  pain, the trademark of metastarstic bones cancer. 

    My hospital is situated in one of the most affluent localities in the world! It has just built an annex for research, including cancer research and its new charity headquarters - for over 40 millions, mostly ftom its own money, with some public funds top up. It owns the land, no rent. My husband and I are pensioners, relying on the NHS like most of us. The Trust attracts high flyers. As a major university teaching hospital, doctors at various stage of training and experience come and go. My first oncologist was a high flyer from Singapore, I googled her. I saw her three times, I had such confidence then, thinking, I will be supported. She disappeared. Since then I haven't seen the same oncology doctor twice

    My case is far from unique. My husband waited for 10 hours before getting a bed after a stroke. He stayed two nights for observation, This was at the beginning of November. Yes, we have had our full of mishaps. His discharge plan included MRI and CT scan and various tests. It never fully materialised. He was discharged with no follow-up appointment even after a stroke! However he was told "please don't drive your car for a month".

    We are English NHS survivors, we worked, we contributed, I volunteered for six years as a NHS panel Lay Chair. I am not sure how long I have to live independently. My neck vertaebra can compress, can snap, and obviously I don't know, because the TEAM remains aloof, my husband still believed that no news is good news. At least by having my story here, if something goes wrong with my newly found lesions, I have the reassurance I am not alone. 

    As for my GP - which one? Not accessible either.

    I might try the Macmillan 12 weeks programs buddy scheme. 

  • Hi Minov

    Just wish I could come through the screen and give you a big hug xx. Remember, you are not alone, even though you may feel like it at times 

    Keep coming on here and say whatever you like.

    The people on here are always great and are ready to listen.

  • Hi  

    I'm very sorry to read of all that you have been going through. It can't be easy to see a different person at each appointment. Does your hospital have a PALS (patient advocacy and liaison service). This may be one way to answer the core issues and questions that you have. It may help you to ring the Macmillan helpline to find more advice and information, this is the link to contact https://www.macmillan.org.uk/about-us/contact-us

    Best regards and I hope you can resolve these issues.

    A x

    What is a Community Champion?

    I am a Macmillan volunteer. 

    Macmillan Support Helpline

    0808 808 00 00 

    7 days a week between 8am -8pm