I agree with pawsome
We all have a right for copies of scans and letters which give the same information that the oncologists are working from. It is fair to say that not everyone wants that detail so unless asked for the oncologists often don’t give it out - it can be very scary for some patients. So I would request these and say you want that information. If you’re not happy with the oncologist you currently have you could also look at changing within the hospital or to another in the Trust, as pawsome also has said. You are also entitled to a second opinion which is where you can use expertise from centres of excellence like the Marsden. I have done so on several occasions just to confirm what’s the next course of action and to discuss any trials I may be eligible for. Paying privately for all your oncology can be very expensive so bear that in mind and you could be like me and live for over 12 years with mets which would have bankrupted us I should think as we didn’t have medical insurance when I was first diagnosed so couldn’t take it up retrospectively!
Hi SondraF, I also have MBC (lung and bone mets). I am also on palbociclib, denosumab, zoladex and letrozole. What I would say is that from my own experience I think you have the right to expect better from your team. I am also someone who likes to have detailed information and know exactly what is going on. What I have found useful is that at every post scan appointment I request a paper copy print out of the scan you have a right to request this under data protection but most Drs should be happy to give you this anyway. I then ask the oncologist to take me through it and they have also in the past drawn diagrams to help me understand. This is via the NHS not privately. You have a right to have the information about you and your disease explained to you if you want it. I think they do have a tendency to gloss over reporting findings unless you really push for it. Fortunately my team now know I am a details person and I want all the information. It sounds like you need to request an appointment with you oncologist to go through your latest scan report in detail. If they aren’t willing to do this I would personally be looking for a different NHS Dr or a different hospital. You shouldn’t have to go private to get this. X
I started in the private sector (surgery and CT scans) and moved to the NHS on the advice of the oncologist who I saw privately but who worked in the local hospital too. If you have health insurance, chemotherapy is fine in the private sector. If you don’t, it is a bit of a risk. The costs can soar if the slightest thing goes wrong. I had neutropoenic sepsis requiring 4 days in hospital and countless drips and blood transfusions. It only happened the once fortunately but could have happened several times during the chemo period, until the blood cells began to revive. The oncologist said that bills could add up to £300-400,000 if anything went wrong (it can’t be predicted) and he’d signed off one claim for over half a million. Factor in your other medical complications and do your sums. I was ok with spending my lifetime savings and private pension but was not prepared to draw on my husband’s. He just said we’d sell the house!!
Moving to the NHS was the right move for me, despite my specialist needs. I couldn’t have been treated better. However, one thing I learnt very early on was the need to be assertive and go to appointments with a list of questions in writing, preferably with a friend/husband able to ask the questions of my behalf because I was like a zombie most of the time lol. If your b-c nurse has said ‘clinical improvement,’ email her and say you’ve realised you need more information and can she clarify exactly what it means for your case. When I didn’t understand what my NPI score meant, I made the mistake of googling it. That was disastrous and my b-c nurse was able to put it into a better context for me after an hysterical email from me!
All the best in making your mind up x
In the end, it will be a personal choice but, although you may be quoted something around £40-50k, you need to be ready to pay a lot more if things don’t go exactly to plan. And that’s the risk.
Currently starting my fourth cycle of palbo / letrozole and have come through my first scan period. I was diagnosed last September de novo with mets to right side L2-L5/S1 only. Received pallative radiotherapy of five sessions to a lesion on my right SI joint, which fractured (i think?) from tumor flare when they started the zoladex to shut down my ovaries. Since I still have my primary I can tell the drugs are working as its changed shape quite a bit.
While the NHS has been easy to deal with, I am growing more concerned about how little information I know about what is going on with my body and how long it takes to get answers. It took almost three weeks for my scans to be read, due to the volume at the hospital, and the nurse called to read the email from the MO that just said 'clinical improvement.' What does that even mean, and did it all improve or some of it or what? And because the scans were delayed I wasn't able to talk to my MO about it at my monthly appointment last week, which would have been delayed anyway as clinic was running 2 hours behind, so i spoke to the BCN only. I also am still having ongoing problems with my left SI joint and stenosis from a prior disk herniation and have brought it up three of the last four meetings. At first I thought it was due to my walking changing from limping due to the SI joint fracture, but its not improved as my walking has. My lower back is a mess anyway due to degeneration and arthritis and Id like to get this resolved before I have another incident like the first one where something happens because it was missed.
Im in London and was thinking of moving to private care at the Marsden because this current set up just isn't working for me. I know some people would rather have less information, but I cant even tell my physical therapist what happened because no one told me and I feel like I am not being heard about my other back issue. Id like to be able to sit down with my MO for 30 minutes or however long, have them pull up my scans to explain what is going on, discuss in a calm and chatty manner how my month has gone, and then leave through a waiting room where people aren't getting overheated about how long they've been waiting.
Has anyone moved to a private setting for MBC? Was it a much improved experience, similar to what I would like to achieve? Any downsides?