Can anyone recommend consultants/trusts which have a integrative approach to cancer treatment?

Hi Silver Birch

I am sorry to hear that you feel you aren't included in decision making regarding your treatment.

You do have the option to ask for a second opinion, I would suggest that you look up cancer services at hospitals in your area, or further afield if you wish, and look at their outcome results.

I don't know how things are working at the moment, and it may be difficult because of the Covid-19 crisis, to get a referral to another hospital.   But I wonder have you tried talking to your oncologist/team, I always asked direct questions and I was always fully involved in my treatment through.  You have a right to be involved in any decisions regarding your treatment, and your oncologist/team may think that you are happy to go along with their suggested treatment programme.  Talk to them.

I hope you can get the info your require.

Take care,

VickiLynne

Hello @VickiLynne

Thank you for your reply. I have had two calls with the oncologist - and each time when I have asked questions - for example to get a sense of my disease, how serious it is, how it might progress, and importantly what chemotherapy might give me - so I can weigh up risks & benefits he has not answered any of these questions. Or any other questions I have asked in order that I might better understand my situation so that I can make better decisions. I am told that the team have decided that what is proposed is the right approach.

I have found this bewildering & belittling. I am a clear and sensitive communicator, I prepare for the calls, prepare questions - and I have run these past other people for their feedback to help me frame the questions in the most positive way. So these conversations have been tough.

Thank you for your suggestion to look up cancer services and outcomes - can you point me in the right direction on how to do this, what website?

Many thanks for your help. Best wishes.

Hi SilverBirch your oncologist team sound like mine.Absolutely unprofessional undcaring.When I was diagnosed In May 2019 with stage 4 breast cancer I was treated like I have to get ready my funeral soon.They took them 2 months to get the proper diagnosis.They have offered me trial immunotherapy but they didnt explained to me the side effects how I will benefit from it or anything about it.My state of my lungs was so bad after 2 months waiting I was told if i want immunotherapy need more tests.but i have to refused because i just wantet to have treatment ASAP so my only option is only chemotherapy.I am on weekly chemo since August,again nobody explained to my how long I have to be on it.I have seen so many people even with stage 4 have surgeries or radiotherapies but I wasnt offered anything.I even think I was misdiagnosed because I had scan in Germany last year too and its saying different story.its pointless to complain to the Pals team they all pulling together.

I hate my team here i wanted to be referred for 2nd opinion but then the virus hit.But I have booked airticket in September I have family in Germany and I am going to have a full body CT scan and meet with a lung specialist there.

Its unfortunate that I have to look for advice and help.Limited resources doesnt mean you shouldnt do your job properly.Thats how I feel.

Hello

I am sorry to hear of your experience and of course the Covid situation has complicated matters for us all. I really hope that you get some positive support and a good outcome when you have a scan and appointment with a consultant in Germany. Because I have not been able to get the information I need about the disease and the treatment plan proposed, I have yet to commence any treatment. I have also not been told whether a delay matters in anyway, or anything about the likely progression of my disease, despite asking these questions. Very strange.

I do wish you well, and hope that you get better outcomes soon.

Best wishes.

Hi

I am sorry that you feel so ill informed, I spent literally months in limbo waiting for other teams to look at my scans and decisions were made without seeing me. I had to get scan results and copies of letters from my PALS team which took a month to obtain. I am now happy with my team and I was able to eventually get more info out of my Onc including life expectancy (over the phone) but I have been frustrated with telephone consultations. My best chat was with a specialist CRC nurse who came to visit me when I was having my chemo. I know that option hasn't been given to you yet but she told me how the scenarios play out, that short term decisions are made based on my three monthly CT scans and that other specialists will be called in for their opinions as required e.g. radiologists and surgeons. As covid has stopped all surgeries locally, chemo was my only option at this time but I expect this to change. I am incurable, so palliative treatment only is being given.

Your current team might improve once you can get face to face with them, or perhaps you can try asking a specialist nurse to speak to them? I got a phone consultation with the Onc at my request when I felt my treatment was non existent. Otherwise try going down the second opinion route, ultimately you have to be happy that you are getting the best treatment available to give you peace of mind. Unfortunately some insecure staff seem to get a bit defensive when you question them too deeply. I hesitated for a bit, worried that I was being too pushy, but then figured that my health was more important to me than worrying about treading on toes. 

Hi,

We have experience both with my mum to give a fair representation of her experience. When initially diagnosed back in 2009 I felt stunned and thought I really did not think it would be like that . The oncologist was hot on the science side and my mum was a stage 4 patient so we did trust him as he was a leading researcher and thought that might come in handy to navigate various treatment pathways and I do believe he would have done that part well . But his manner was pretty dismantling at the same time and thought my mum did pretty well to put herself through any treatment after her initial consultation. I don’t think we were an inexperienced family with health care as immediate family were all trained by the NHS and had a good overview . The waiting room looked like a congested airport so I factored that in too . 
Now she has an incredible oncologist. Maybe does less research but she is up on the research , patient centred, she will carefully select her approach. She stands by her judgement by giving her clinical reasoning but that does not feel inappropriate. She listens , spends most of her time with newly diagnosed or patients who have disease progression are her priority. More junior staff do my mum now and she has a catch up every now and again . I don’t know how she would answer the diet / exercise aspect as I guess time constraints do factor into it .Anything I want to know in that area I use PUBMED search engine and read the most recent academic articles for myself . It has filled in the gaps nicely . Not saying I understand all of it but I can get to the point . 

I have to say with time my mum did grew to have a bit of affection for her first oncologist and was sad when he left but initially she was left avoiding him and much preferred his registrar.

I hope things improve from you . You sound reasonable in your request . Sometimes I wonder if all the adverts for cancer charities created a false image of what to expect at the time . It was more like a quick brush over the important bits and , next !

Take care ,

 Court 

Many thanks for the replies, and thank you court for sharing your mum's experiences. The word 'dismantling' which you used is a good one - and describes how I have felt after the two calls I had with the oncologist.

I feel as though we have completely missed the basics - this is the disease, this is what it means, what are your hopes and expectations, these are the likely outcomes for different approaches/treatment plans.

I am going to get back in touch with my questions again, and see where we go. I will be seeking a second opnion, but knowing where to seek that from is a bit of a challenge.

Best wishes and thanks.

Hi,  My consultant is Mr Lim from the York Trust, a lovely nurse called Jenny who have both kept me very well informed about my treatments. Nothing is to small for them to help me.

                                                                                                                              ycfc10

Hello ycfc10

That is so good to hear, and thank you for sharing. It is so reasurring to have a team that keep you at the centre of it, and keep you informed. This is what I would love.

Best wishes

This made me feel very sad to read & I sympathise with you. I met my oncologist following surgery last May. At that time, I did not need Chemo. The meeting lasted over an hour. She was extremely informative & very easy to talk to & answered all my prepared questions & more...with clarity. Basically, she had time for me.

Although my bowel cancer was removed & now clear; unfortunately I was diagnosed with two small nodules on my lung recently...& am now on chemo tabs.

Following this diagnosis, my Oncologist rang me to propose the best treatment for me. It was a very lengthy phone call, & once again, she listened to my personal concerns re. treatment.

I was due to start Capox (Oxy. infusion + tabs) a few weeks ago. However, whilst in the treatment room, I had a complete meltdown (after weeks of bottling up fears.) My fear was over possible side effects of the infusion, Oxyplatin....which in many cases causes peripheral neuropathy...which some can experience for years after end of treatment.

The treatment nurses called one of my colorectal nurses, who came straightaway & sat with me for an hour, before phoning my oncologist...who happened to be at the hospital that day. She was due a 1/2 hour break & suggested I went to her office for a chat. She perfectly understood my fears (I am an artist & would not be able to paint with numb fingers.) She did not badger or berate me. She gave me the stats. re. effectiveness of both methods versus taking tablets alone.On that basis, I decided to just opt for the Tabs. as for me, quality of life is very important.

One thing she did say was 'We don't just treat you physically, we treat you as a whole person, which also includes your mental well being.'

After being on the Tabs for two weeks, she phoned me to ask how things were...as did my colorectal nurse.

I feel that as a team, we are all working together on this....& for me that matters.

I do hope that you get the treatment that you deserve. Best Wishes