Undecided about a second opinion

Nothing constructive to offer I'm afraid, but I do want to chip in and say that your oncologist sounds like a complete disgrace and, if I were you, I would definitely be looking elsewhere.

As regards cost, the impression I got was that the Cancer Drugs Fund will pay for one type of immunotherapy for up to two years. I think there may also be rules about the type of cancer involved.

Stuart x 

Hi Yes, I think it is time for you to look elsewhere for an oncologist who can support you and get you the treatment you need. When I failed to get on a Trial because the melanoma had gone to my eyes, my oncologist moved heaven and earth to get me one of the drugs on the trial and even convinced GlaxoSmithKline to pay for it for me! To be honest I think the oncologist you have is in the minority, and there are better ones out there.

Why not phone the one you have found and ask if you can have a consultation. All she can say is yes or no, you won't be shot for asking, so take the chance. What have you got to loose? Good luck!

Hello Rainieday, 

Your post caught my eye as I’m on immunotherapy drug Pembrolizumab at Cambridge but I have a different cancer than yours. I know that not all cancers have access to immunotherapy so curiosity got the better of me and I found this link (I’ve  put it below) which you may have come across, it mentions London so I’m wondering if that’s why you were thinking the Royal Marsden. 

https://www.cancerresearchuk.org/about-cancer/find-a-clinical-trial/a-trial-looking-at-pembrolizumab-for-people-with-advanced-gynaecological-cancer-peacocc#undefined

I haven’t had to go through any formal second opinion route (there are more than  2 consultants for my cancer in Cambridge) the ex teacher/ trainer in me wondered if the Macmillan support line might help or this link below. 

https://www.macmillan.org.uk/cancer-information-and-support/treatment/your-treatment-options/getting-a-second-opinion

Its good to get first hand experience of someone doing it, it gives a lift I find but failing that trawling the Internet for info can feel empowering. 

Its important to feel that your team is routing for you, but I also know they are sometimes constrained by NICE guidelines, I think some bend the rules a bit too or find ways round things. 

If my Pembrolizumab experience is of interest just ask away.

Hi Rainieday, your onco sounds like a really grumpy numpty. Muttering about cost is such a wrong thing to do. You're a person, not a commodity! I say dump the numpty and look elsewhere. Phone the MacMillan helpline number for advice would be my choice or contact your GP. 

When I was told I couldn't have an operation on my back because it wouldn't help, the surgeon asked me if it would be ok if he got a second opinion. He did, and the answer was the same. After a year or so my pain got worse and my GP arranged a third opinion, and the answer was the same.

I hope you have better luck than me, I'm sure you will. Good luck Rainieday.

Tvman xx

If you have the name and hospital of the doctor you want an opinion from you can ask your present oncologist to refer you to them. I have done this and he just did it. They are used to patients asking for second opinions and it is your legal right they cannot say no.. I have a very good relationship with my oncologist and he always does my wishes. That is what they are there for. 

the other thing I have done is pay for a private consultation and that also can be helpful.

Good luck x

Just wanted to thank everyone for responding. It's a big help to hear from those who have already trodden the path. I've written to my oncologist and have a phone consultation booked with him - though it's not exactly any time soon like most of my appointments that come through. In the meantime I'll enquire directly to the other oncologist and try to get an idea on the best way forward.

Thanks for the help.

RD

Hi

I have found you have to be firm and forthright with them. Last year my vertebrae collapsed and I had two bars put in my back to support my spine. Then my tumour decided to lean on my spinal cord causing loss of sensation in my legs which would become paralysis. I went in for some radio therapy and the spinal team came to see me to discuss a possible operation. After much discussion they went off to talk to my oncologist and then the MDT meeting. They came back and said the operation had a 6 to 12 month recovery time which would be longer if I was on anti cancer meds. They then said they had to think about the quality and quantity of life i had left. I said if I have less than 12 months please provide a letter for my life insurance as they will pay out if thats the case. They said no. I then very firmly said that they cannot have it nboth ways I cannot have less than 12 months for operational purposes but more than 12 for insurance purposes so they should go away and either come back with a letter for my insurers or a date for my operation. They went away and came back with a date. Its your life, your body and if theres a chance it will do you good they should have a very good reason to say no which they should be prepared to explain to you in detail

Hi Rainieday

I fully get where you are coming from - my last appointment I was told I now have mets in my lungs (having got rid of it elsewhere in my body) but they are small and my oncologist wants to wait 3 months and review position of starting chemo - again she may be right but it doesn't sit right in my head.  She has told me I am entitled to a second opinion so mulling that over as after the next chemo there are currently no other treatment options unless a trial pops up but these are all still on hold. 

She said if I know of anybody she would help me arrange it so am thinking about it but if your consultant isn't as helpful contact PALS or your GP should be able to help.  Macmillan also have advice on their web page about this. There are also private options but not all of us have that sort of money.

Interesting you say about your consultant muttering about cost I have heard from several people who work in the NHS that there are national guidelines re treatment plans for different illnesses and also "budgets" for treatments/patients and they take into account the benefit of a treatment to the patient/against the cost so the better the projected outcome the more likely you will get it.  To me if that's true it's wrong on so many levels especially having seen the cost of covid per patient.  

In relation to immunotherapy etc there is something called "TOP UP NHS" where you stay under the NHS but if there is a drug which would help but not available on NHS generally they will pay part and you pay the rest - although cost can be quite prohibitive - my contribution for one which would help me  worked out at roughly £3800 every 3 weeks!!!  CDF consider assisting if your cancer is on their list - which I found online.

Hope you get on ok - have done some research into this for me so feel free to pm me.

I find that bloody minded is good - if you don't fight for yourself no one else will x

Just wanted to thank you and remoh and all the others on this thread. Since I posted I've contacted the Macmillan support line and had a long chat with a lovely nurse in Glasgow. She was so helpful and gave me a lot of leads and advice.

Since then I've called the possible new oncologist's secretary in London and will be making arrangements to send up to date case info via my present oncologist. I've been waiting for an appointment to come through to get a scan done but when I called my present one's sec. recently as to why nothing had come through yet, I discovered that it hadn't even been ordered yet.(3 weeks have gone by). So I'll be waiting longer for that to get sorted, but I will keep pressing.

The new lady, if she agrees to do the consultation, will do it on Zoom so I don't have to travel to London. Fingers and everything else crossed.

I also wanted to tell you all that I am so glad that I have found this forum. It has made a big difference to my outlook.

RD

Oh RD, That is terrible they haven't even asked for the scan yet. I would say unless this new oncologist has horns, she will be an improvement in the one you already have! I hope your Zoom consultation is soon! Good luck, you are doing the right thing!