I am interested in learning how others have been treated with various blood cancers. Were you treated at your local hospital (which may have advantages in terms of geography and perhaps speed of access when treatment needs to be done quickly) or at a specialist hospital where you have access to the expert doctors who have worked on clinical trials and seen lots of people with your specific type of blood cancer. As a patient how do you feel about seeing a local more general haematologist versus getting referred to someone who is an expert in your specific type of blood cancer? Have you found any barriers to being referred for a specialist second opinion if that is what you wanted? Has COVID19 made any difference to any of this?
I know that in CLL many patients want to be treated by an expert centre especially when watch and wait comes to an end and some of us have found some local haematologists can be reluctant to facilitate this. When that happens some of us have just asked our GP to refer us on. If anyone is willing to share their experiences and opinions on this I would be very interested as it is a topic close to my heart and I would like to get a feeling of how people with other types of blood cancer experience this.
Hi @Adrian, great to here from you again, I was wondering how you are and
where you are living in lockdown.
Your main point is really a pros and cons question I suppose and my local hospital works with a brilliant cancer hospital so I feel confident in my local hospital.
I am extremely lucky as my local is a bus ride away and the cancer one has a building within that hospital and their main hospital is less than 10 miles away.
When I was first diagnosed I would not have even thought of such dilemmas or dared to ask for a second opinion.
This forum has taught me a lot and enabled me to approach professionals as an equal with with a voice, rights and have the final decision over my treatment.
The original lockdown meant that my routine blood tests were carried out at my local GP’s with a follow up telephone consultation.
A good post to start.
Take care and stay safe.
Hi Adrian, I have CMML,on watch and wait. After diagnosis at my local hospital York initially I accepted all that was said until I did my own research into my condition. First I did a Data Subject access request for all my blood results and reports, I got to see them photographed them dating back to 1997 put them on a spreadsheet so were instantaneously visible together which was quite revealing. More research lots of info from MDS website. Had a local Hematologist report after a scan stating I had CML which my local doctors then referred to as my condition when I saw them, had to get this corrected by writing a letter to doctors and hospital. I found out through MDS website about Leeds being a Centre of Excellence for Blood Disorder and Professor Bowen a CMML specialist . It became a no brainer for me to go and see him, when I approached local hematologist about a referral they tried to put me off saying they didn’t think he would see me. This statement flew in the face of what MDS said about Professor Bowen and referrals. I did get referred, he reclassified me from CMML1 to CMML 0, advised me CMML was rare and my particular CMML was also a rare form of the rare. He gave me a prognosis of perhaps several years with caveats he knew my York Hematologist and said I should be alright with them the only negative thing he told me. I left Leeds more positive about my predicament more than any other time I had at York. Shortly after this a scan revealed a enlarged spleen and that’s when another York Haematologist Consultant wrote me up as having CML. Nobody in medical profession picked up on this until I wrote to them. By now from my initial diagnosis I remained positive but had niggling doubts, so told York I wanted my treatment transferred to Professor Bowen at Leeds (as it was my right) . Not hearing anything from Leeds for quite a while checked with them they said had heard nothing from York, I knew York had written saw letter on my Doctors notes, the penny dropped when I realised they had sent it to wrong hospital in Leeds. I am now under Professor Bowen, who having looked at my blood spreadsheet says it possible I have had CMML since 2011, the start of abnormal results not picked up on by my doctors. I remain more positive now than I did on my previous visited even though time is passing. Really disappointing is Bloodcancer UK have taken CMML of their cancer list seems we are not worthy of a voice… Graham grahamcheyne@hotmail.com
Hi @grahamcheyne,a great big welcome to our forum and your experiences are so useful and I am impressed at all the research you carried out. I am also so glad you found a consultant that you have faith in as being an expert in CMML
How are you feeling now?
Hi Erica, Within myself I feel fine, still not hindered by anything, occasionally get twinge or two in my left side think that could be the spleen. Had my blood taken last week and have telephone consultation tomorrow . The results are up on last time, in last year or so, they have been up and sometimes down, a question I need to ask ,Why?.
Hi @grahamcheyne, the trouble I find is that any ache or pain, lump or bump I have and I always think is that my CLL or not.
Please do let us know how your telephone consultation goes tomorrow.
Hi Erica, Had the consultation went extremely well the Professor was not overly concerned about the increase in my platelets and monocytes as everything else was in range. Again not overly concerned about side twinges. He was however interest in the fact when I told him in the last 8 or 9 years I have suffered with a swollen foot in the winter and feels like chilblains and my doctors haven’t a clue what causes it despite seeing a variety of specialists and having scans and xrays. He told me some research is looking at skin issues and CMML and talked about a special blood test where they have to examine the sample while its warm more or less straight from your arm. I told him I believe I had that done some years ago so he is going to check with York lab. Maybe more news at my next 3 monthly appointment.
I sometimes think also, when somethings not right, is it the CMML. If I get an infection I see the Doctor straight away and they treat it seriously. Graham
hi @grahamcheyne we hope you’re doing okay? And thank you so much for sharing your personal experience with us, it does sound like there has been so much you’ve been through- and it’s really good you’ve reached out on here for support.
Hi @Adrian - I hope you are feeling well today. What an interesting topic! I have relapsed with Lymphoma multiple times, which was first diagnosed, and treated at my local hospital. However, as time went on, I was transferred to other hospitals, as locally, they had run out of options. By the sixth time I thought, this is my life and I’m going to take over! I did the research myself and found an expert. I told my local consultant that I wanted to be referred, but he wanted me to go elsewhere. I stuck firm and he agreed to send me. From the moment I met the new consultant, I knew I had made the right choice. He came up with a plan instantly and I had every confidence in him. There are pros and cons as the hospital is about two hours away, but it is worth every minute of that journey. I still have a good relationship with my local consultant so that if I get an infection in my line, or I need bloods, I can go there instead of making a long journey. I would advise anyone to take charge of their treatment- it is YOUR life and it is worth fighting for. I don’t think many people realise that they have the right to say where they want to be treated, but as a “Professional Patient” I want them to know that they can!
I don’t know if it is because I live in London or if I have just been lucky, but it has worked well for me both ways (most of the time). I was initially referred to a local hospital (on MF diagnosis 30 years ago) where for many years I was treated by two, then one (when one retired) absolutely brilliant haematologists whose knowledge and expertise (and doctor/patient manner) were all second to none. I was treated both there and at a major cancer hospital in central London until it was decided I could just continue going locally which was absolutely fine for the next 25 or so years until the other consultant retired. There then followed 2 or 3 years of ups and downs with different doctors at my local hospital. Eventually I started seeing a haematology consultant there who specialised in MF. Since then, I have had exceptional treatment again. She shares my care with the top prof in her field in another central London hospital and I have total faith in both of them.
I am lucky living in Wigan with an outpost of Christies at my local hospital. i was diagnosed 18 months ago with Myeloma and started chemo in August last for 8 months finishing in mid-March {nicely before lockdown} but statred chemo again 8 weeks ago. First chemo was weekly jab which was delivered only 500 yards from home so could not have been more convienient. this time its pills MPT; so i just bet a fairly large bag delivered every 6 weeks from the pharmacy {again round the corner}. Not had any reason to question my care from local NHS but more information on long term prognosis would be helpful.
Hi @The_Real_Mackay, a warm welcome to our forum, I am really glad you have found us.
It sounds as if you live in such a good location for your medical needs.
As for a prognosis, that is unfortunately something we cannot tell you and is a question for your medical team. We are all very unique, complex medical beings.
I have learnt to ask about my fears, thoughts, feelings and practicalities, ensure I understand the responses and then to ask those follow up questions.
The Blood Cancer UK website has information on Myeloma, treatments and prognosis under understanding blood cancer.
We are always here to support each other and if you would like to talk to someone you can contact the Support Services Team on 0808 2080 888 (10am-7pm Monday-Friday, and 10am-1pm Saturday and Sunday) or via email at support@bloodcancer.org.uk
I hope others with Myeloma will share their experiences with you here, take care.
Hi @Adrian,
Diagnosed after 3 months with AML @ local hospital. Consultant Haematologist (the most like a professor, with little bedside manner, out of 3) told me & spoke of a trial. I said I didn’t want a trial, I wanted something that was known to work! I’d never had experience of cancer & medical trials, luckily.
He explained the trial & then asked me where I wanted treating. I was totally agog. I asked if it could be done there & he said yes. I said right I wanted my treatment there as my friends & family could easily get access to the hospital.
All went well. I went into remission after 1st round of 3. Not good news that all 6 & 9 chromosomes had decided to swap places. Needed a Stem Cell Transplant. Very luckily one of my brothers was a very good match. This was done 50 miles away. All good.
12 years later I’m on here sharing my story with you.
Glad to hear you have had a successful journey and you express well the balance between travelling to an expert hospital and potentially getting involved in trials (if that is what someone wants) vs the convenience of being treated in your local hospital. There is no clear answer though one thing that may begin to happen more often than it does now is local doctors working in parallel with the experts. So for example one of the top experts in MDS is now offering a video consult service where you would obviously continue to be treated by the local team but have the benefit of his advice remotely.
Glad you are connected with Christie but able to be treated locally. Maybe the best of both worlds. Prognostic information is a double edged sword as often the doctors cant really give you a clear idea of what will happen in your own case, and to be honest even if they could would we really want to know precisely how much longer we should expect to live? It is important to have a generalised conversation with your doctors, however, but also important to have a sense of hope as you go through treatment.
It is not always easy for people to find an expert themselves. Well done for doing the research. I wish there was a list of experts maintained by one of the blood cancer charities. Maybe that’s something that can happen in the future.
Glad you have got yourself under a true expert and it is great to see that MDS UK have a list of experts on their website. Would be great to see similar lists for other blood cancers.