Stage 4 bowel cancer

Polly68

RFA

Hi ?, I've been referred for possible RFA for lung mets after being turned down for surgery due to lymph involvement ( not feeling too positive they'll agree!) and just wondered whether anyone had been turned down for RFA to lungs but then paid privately to have this done. My questions are why you were originally turned down and how you then got treatment, where did you go ( I live in Kent) and roughly how much will it cost?
Thank so much
Much love ❤️ P :x::x:

Polly68

@kim74 @mem - a quick update ... I requested a referral from my onc to Dr Dalal at the Harefield on Weds and received an outpatient app through the post yesterday.... 3 days that never happens! I know he's not agreed to do anything yet, but it's not a no so far! :x::x::x::x:

kim74

Hi @Polly68 That is good news that you have had a appointment so soon not long to wait. Fingers crossed that everything goes well for you. Go armed with questions if you don't ask as you say you don't get. Let us know how you get on.
Best wishes
Kim :x::x:

mem

Oh wow @Polly68! Thankyou for your update, that was a quick response. I have just looked up Dr. Dalal and his resumé is a very impressive one. Will be keeping everything tightly crossed for you and please keep us posted ?? :x::x:

Claireb1978

Hi @Polly68 how did you get on with Dr Dalal?
I too have 3 small mets on my right lung and 1 on my left and my oncologist has just referred me to him for RFA. I’d be very interested to hear your experience. Claire

Polly68

Hi @Claireb1978 , I had a very good meeting with Dr Dalal, and he was keen to go ahead with the RFA as my tumours were easily accessible. He wasn't concerned that I had lymph node involvement and his lovely nurse assured me that he was careful to make sure he treated the tumours so that they wouldn't come back. I was keen to go ahead with him, but was then contacted by a surgeon at Guys who wanted to biopsy my chest lymphs, and when he did they came back non cancerous and so he offered me surgery. I decided to go with the surgery and keep the RFA in case I had any further recurrence. I chose Dr Dalal because he was recommended and had a good resume and I would definitely go back to him if needed in the future - a very enigmatic and approachable guy. Sorry I can't help with regards to RFA treatment, but will tag @mem as I know she has experience of this procedure. Paula :x::x::x::x:

WendySue

Hello @Claireb1978 I also had a referral for RFA with Dr Dalal. It was a private referral but he offered me RFA in his NHS clinic. I have nodules in both lungs. I was prevented from taking up the offer as NHS Wales would not fund it as they have narrow criteria. Just mentioning this as see you are in Scotland so worth making sure they would agree to fund an offer. I would highly recommend Dr Dalal- very inspiring and keen to open up options for NHS patients.
Good luck :x::x:

mem

Hi, @Claireb1978 and thankyou for the tag @Polly68.

I can’t really comment on Dr. Dalal as I am in a different area. I was ablated on by Dr. B. Bhartia, a consultant radiologist at St James in Leeds, who is also a lovely and caring man.
I have had both RFA and MWA with no recurrence in the ablated areas to date. Having lung nodules ablated is usually a pretty straightforward procedure in comparison to resections, but like everything, there are risks, which I'm sure you will be made aware of at your appointment. You are usually put 'under' whilst the team ablate the nodules, which is done under CT guidance, and the procedure is usually completed within a couple of hours. I did suffer a pneumothorax with my first ablation (RFA) which, unfortunately, is a potential risk, especially when there is more than one nodule being ablated. But saying that, and as you'll know, not everybody suffers the potential risks we are all made aware of when undergoing treatment and that’s for anything, even pain relief! Being offered and having the procedure definitely outweighs the potential risks in my opinion.
My second ablation (MWA) last year, was very straightforward and I was home practically 24hrs later with nothing but a bruised feeling in the ablated area and nerve pain in the surrounding areas, which now, have both completely gone.
I think ablation is a very positive procedure and I would have it any day if it were offered to me again.
Good luck with your referral and if there is anything else you would like to know then please just shout. :x::x:

Hi @WendySue, I'm so sorry you are having to deal with such senseless bureaucracy on top of your diagnosis. It's just disgusting and how can that be allowed to happen in this day and age!? :x::x:

WendySue

Thank you for your kind words @mem I have found it hard to get over the disappointment but glad others are getting access to RFA as hopefully Welsh NHS will be shamed into joining the 21st Century. Sounds like you have a great team behind you in Leeds!
:x::x:

belinda66

@WendySue: -

It's very generous of you to be so pleased for others. It is upsetting beyond words to see the injustice of people denied treatment simply because they live in the wrong geographical area. It must be devastating for those like yourself. One can become fond of those they meet via an internet forum even if never meeting face to face.

WendySue

Your words made me well up in a nice way @belinda66 I do agree about how we show care in this forum for each other. I had been browsing the forum for a long time before joining as I have always been nervous of social media much to the amusement of my lads. I am so glad I plucked up the courage to join.

mem

I'm not surprised you found it hard @WendySue it really does beggar belief! I do wonder if the outcome would be the same if a certain oncologist's family member was going through the same?! Here's to common sense and compassion prevailing for you!
I hope you're doing well on chemo and my fingers will be crossed for some positive results. :x::x:

WendySue

Thank you @mem I am trying to use my poor experience in a positive way by raising the issue with the Welsh NHS and writing it up as a patient experience report. I have a brilliant advocate from my Community Health Council who is on the case and supporting me. I insisted on changing oncologist after the actions of the one who obstructed the offer of RFA and he has been wonderful. Just been told he is leaving for a new post at a leading cancer centre in Canada so pleased for him but sad he is going- the best clinicians don’t stay long where I am and that adds to the postcode lottery. Rant over and fingers crossed @Claireb1978 has great meeting with Dr Dalal
:x::x:

mem

Well, I think your brilliant @WendySue and good for you! :x::x:

Claireb1978

@WendySue @Polly68 @mem @belinda66
Thanks to you all for your help and advice.
I am an infrequent visitor to this forum so I’ve just read your responses. Been distracted from medical issues by getting married last weekend - a very entertaining diversion!

Thanks for sending out your thoughts. It is incredibly useful to hear and share our experiences.
I am appalled @WendySue that the welsh nhs turned you down. What are their criteria? Is it the same as the English nhs?
Or the Scottish nhs? Could you publicise it amongst the welsh press or get a local politician to take up your cause? Surely the original decision can be appealed?

I just spoke to Dr Dalal yesterday - it has taken this long to get the referral as the Scottish government had to agree to fund it.
I’m delighted I am getting the treatment but there is a 3 month wait so I’m looking at early September. This is gutting as I’ve just spent 9 months on chemotherapy and feel like a massive wait to remove the cancer will give it time to spread. Waiting so long between chemo and rfa - 5 months - seems counterproductive. Does anyone know if this is usual?
I’d really like to find out experiences from other people who were sent for RFA from Scotland - I want to know how long they had to wait for their treatment and how much funding they were given by the Scottish government. Do any of u know anyone? I think I’ll do a separate thread.

Thanks again for your help.

Claireb1978

@kim74 sorry I forgot to tag u in above rant!

Polly68

@Claireb1978 congratulations on your wedding and what a wonderful distraction from this merry go round.
I'm so pleased to read that you've been given funding for your treatment, but like you I think 5 months is a ridiculous wait. I know that when I saw Dr Dalal he did say he had a long waiting list and in Feb time that was about 3 months. It might be worth asking if you could be considered for a cancellation if one were to arise and raise your concerns about how much growth might occur during the chemo break - you don't want to find the tumours have grown beyond the upper limit criteria! I have had to go back on chemo - I had left lung surgery but before they could do my right lung they found some liver tumours that are operable. Before liver surgery they found the remaining lung tumours had continued to grow on the chemo break, and would have been too large by the time the lung surgeon could operate. So, back on chemo first to get everything back under control! Good luck and I hope you can get some answers to your other questions :x::x::x::x::x:

Claireb1978

@Polly68 gosh it sounds like the roundabout has been full on for you. I was wanting to find out if it’s possible to continue with a targeted therapy like Aflibercept on its own without chemo? It is done for other cancers. It would maybe keep the cancer at bay without having to get chemo until it gets removed... this might be worth a post to find out if anyone else has done this.

mem

Huge congratulations on your wedding @Claireb1978 🎉🥂!

Sorry to hear about the referral issues you're having, 3mths is a long wait. Are you adamant that you want to be seen by Dr. Dalal? Or due to the 'hoops' you're having to jump through, is it not a choice? I hope as @Polly68 has said, there will be a cancellation and you get your appointment sooner rather than later 🤞🏻:x::x::x:

WendySue

Hello @Claireb1978 congratulations on your wedding and really pleased to hear that you have been accepted for RFA with Dr Dalal. It is a shame that you had a delay while waiting for NHS Scotland to approve. When I was accepted by Dr Dalal it was a 3 month waiting list. I did find Dr Dalal to be particularly approachable and egalitarian in his approach to patient communication so I would think he would be open to discussing your worries over the wait.
In reply to your question about NHS Wales one of the problems was that the Funding Panel would not specify criteria- just that evidence was required to prove the efficacy of the treatment and that I would fit the exceptionality test- this means proving ahead of the treatment that I could be expected to have a better outcome than other patients at same stage of the disease- how on earth one can do this is anyone’s guess. It was also complicated by the fact that my former oncologist had always advised I was chemo only and had a major tantrum that another clinician dared to take a different view. I found out after being turned down that she had submitted a substandard application with a note attached to let funding panel know she did not agree. I still have complaints going on but my lung nodules have grown while fighting for my rights and it is now too late.
It is very positive that you have got a definite offer that will be funded and I wish you lots of luck.
Wendy :x::x:

belinda66

@Claireb1978

Congratulations on your wedding and best wishes for the future.