Appeals process / support from within NHS if you have issues with treatment decisions / NHS funding

[Gillyflower]

Hi everyone,

Thanks for all your shared experiences, information and support!  Its been really helpful xxx

Pam, so sorry to hear about your fall, but thanks for sharing, its a good example of how nothing is 100% certain.  Thanks very much for your suggestions about the scan reports too - thankfully I did get that tip a few months ago and have insisted on having copies of everything now and it has made my life so much easier!  I completely agree with you that knowledge is power. I actually found so many inconsistencies in my scan reports that I was able to feed this back into my complaint. 

What you said about each Radiologist interpreting each scan differently and the language they use is totally true - my GP even said that some of the scan results were written very poorly and its a wonder my Oncologist was able to determine anything!

So for now, I will wait and see what reply I get.  What I've learned from this whole experience is that Radiology and Oncology aren't exact sciences - sometimes they can't really tell from scans what is going on and are relying on me to tell them about any symptoms I have, so they can make educated guesses.  I got to the point where I said to my mum the other day that it wouldn't surprise me if the Oncolgist turned around after my next scan and told me they had gotten something wrong!

[Guest user]

Hello Pam, 

I sent you an apology early today for misreading some words in your email but it has got lost somehow.

Thank you for your clarification. 

x

[Woodsbonsai]

Understood! Thank you. x

[Newgrandma]

Hi, just to be clear, it is a copy of the scan REPORT I ask for, not the actual scans. That's far too technical. , unless you have medical experience. The reports give you something to compare over time. 

Pam x

[Woodsbonsai]

I must admit I was also unaware that you can have a copy of your scans so that’s something I shall do going forward.  Thank you for that information.

 I had an issue with my previous scan whereby they called me and wanted me in the hospital that day because there had been a change and they wanted to give me radiotherapy the next day.  Luckily I contacted my spinal consultant who is based at another hospital.  He got the scans and discussed it with the oncology team and between them they determined that the change was so small that it didn’t warrant any action, particularly as it would have been the last amount of radiotherapy I could have had on my vertebrae.  I still don’t know what prompted them to panic and call me in.  I’ve always just gone along with what they’ve told me and thought I was well informed but reading all the messages on here makes me realise I should be asking a lot more questions.

Gillyflower, hope all goes well with finding the right people to submit your formal complaint to. 

[Guest user]

Dear Gillyflower, 

I can't help with this (too new - only diagnosed early March) but I just wanted to wish you luck and to thank you for sharing your experience. I never thought of asking for a copy of my scans before but I will now.

Not that I know what I'm looking for but it's a scary process we go through and even scarier to think we could be taken mistakenly off a treatment that is actually working. 

It requires such a lot of energy to formally complain in writing, knowing the might of the medical profession.

I agree with you about PALS. 

All best, 

Angel Eyes

[Newgrandma]

Hi, sorry to hear you have all this extra worry - as if cancer and covid weren't enough!

I have always asked for copies of  my scan results so I can compare the results of the current scan with the last and ask questions if something isn't clear. For me, knowledge is power.!!  If your onc is making treatment decisions based on your scans, then you should be able to see why. It's also worth remembering that different radiology consultants can interpret scans a little differently and use different language to describe what they find. Some give a far more comprehensive report than others. When it's  the same guy reporting as last time, they may focus mainly on reporting changes in any lesions they identified in the last scan.

I have also had "suspicious  lesions" reported on my ribs which on the next scan showed as " healing,  probable fractures" . I fell flat on my face in the carpark coming out of radiotherapy and hurt my ribs so that explained that. Having just had radiotherapy, I didn't get an x ray -i just wanted to go home with  my black eye and split lip!

I think we have to remember that unless something is biopsied and can therefore be definitely shown to be  malignant by histology, the only things to go on are indicators on scans in change in lesion size and behaviour and our symptoms .

You are always entitled to a second opinion if you dont feel ok with what you have. We are trusting these people with our lives.

I hope you can find the right answers. Virtual hugs - stay safe. Pam x

[Lyonsjj001]

Hi

My second operation for a wide local excision to remove a tumour from my right breast went wrong, and I was advised to contact an independent complaints body who oversee clinical Complaints within the nhs. They were very good a guiding me through the complaints procedure, and even accompanied me at meetings. I think it depends On your area as to who that body is? But the pals service or your local council health department should be able to guide you. 
 My case was referred to the Parliamentary & Health Service Ombudsman, after a lengthy complaint procedure and face to face meetings it was deemed the hospital was not negligent! My only other course was litigation, and when your fighting cancer I think they bank on you being too tired to fight any further. The only stumbling block was cost!  Otherwise I would of continued. Hope this is of some help. Good luck. 

ce ombudsman 

[Gillyflower]

Hi Nicky,

Thank you so much for sharing your experience with that, it has given me some new perspectives to consider as I hadn't really stopped to think about how it must feel for Oncologists.  It made me think that its only human nature that they would want to spare us the details (rather than deliberately not telling the truth), so I'm glad to think about that because it means I can have an honest chat with my Onc and reassure her how and what I want her to tell me.

Its also very reassuring to hear that you've had to challenge some treatment decisions and also come away from appointments reflecting on things to challenge later.  Sometimes I feel like maybe I'm just behaving and thinking this way because I'm in denial about my condition but no, I definitely "need" to know, for whatever reason it makes me feel more settled about it all.

I have written a letter of concern and sent it to the area clinical commissioning group so hopefully it will spark a bit of an investigation and even if nothing comes of it other than "your Oncologist followed all the correct procedures", then I'll accept that, its the "not knowing" that drives me nuts.  Thanks so much for your responses! xxx

[nicky08]

Hi Gillyflower

I have found over the years that oncologists sometimes like to spare us the detail - I can't think of any other reason why they don't tell us the full story behind each scan.  Sometimes I ignore the quickly covered comments as I can't deal with everything all in one go but challenge them later.  I have seen letters to my GP which mention mets I never knew I had, or been told about.  I have also had mentions over the years about lung mets - 'what lung mets?' These range from being told they are just nodules to saying they are nothing at all.  Either way they have never done anything, just added stress when you hear about them.

I also had to challenge my current onc last year when I had scan results that he, and the radiographer interpreting them, said I had new mets. I was so shocked as he also was about to change my chemo.  I (again!) challenged him and got him to look at an MRI that had been done.  Lo and behold the mets were already there and were stable or shrinking.  If I'd not really pushed I would have been taken off the chemo and put onto something else.

I do think you should report this, after all we only get one chance at all of this and the criteria for some of the drugs mean you can't re-visit them if you have to stop them.

Good luck.

Nicky x

[Jennie60]

Hi Gillyflower, It's shocking what you are going through on top of everything else going on at the moment. I think taking this further with a formal complaint is all you can do. But in the mean time it must be so worrying. Thank god for breast cancer nurses. They really do check when things are not quite right, regardless of their workload. It sounds to me like a change in onchologist would be good. Is that possible? I've read about ladies on here getting second opinions too. I'm sending you love and hugs and hoping things will be clearer soon. Take care 💕Jenxx

[Gillyflower]

Thanks Jennie, yes I was pretty stressed out as if I didn't have enough to process! xxx Thank you for sharing your experience, it just goes to show that we can never tell what they are going to suggest next and its really important to not just let them make all the decisions!  Gosh, can you imagine in your case, you could have potentially been pulled off a treatment that was actually working well...it doesn't bear thinking about.  It makes me really mad! Anyway I hope you are doing ok today? xxx

I've got to the bottom of what has actually happened with my case now and why the Onc has pulled me off Palbo.  Apparently there is disease progression in my spine!!! (which my Oncologist did not tell me when I saw her).  So here I am running around getting mad about her comments on my possible liver mets when actually there was more to it than what I was told.  I am fuming.  I have had a good chat with my breast care nurse and got help from the MacMillan Service Manager at my hospital so now I know what is what at least.

My breast care nurse agreed with me and said I'd had a very poor appointment and she was annoyed on my behalf.  The liver situation is still an issue but my nurse is so supportive of me and has agreed its not been dealt with properly so she is going to take my views and concerns to MDT next week.

I have sought some outside advice as I am not happy with the overall way my case has been handled over the past 2 years (the fact they didn't monitor me and ignored unidentified lesions in my spine which turned out to be mets), or my Onc's seemingly poor professionalism in the past few months.  I've lodged an official complaint the clinical commissioning group (CCG) so we'll wait and see what response I get!

[Jennie60]

OMG what a difficult time for you. I hope you find some answers to rely on soon. I was almost taken off meds in January after only 2 mths..the oncologist saw fluid on my lung and his gut feeling was change to chemo. Like you I was terrified and very surprised they would change medication so soon. It was only because I had an actual face to face appointment that they reconcidered and thankfully my nurse was present. I felt and looked better than they had imagined I would and my nurse reminded them the scan had been done after 2 months not 3 so they should give it time. Phew meds continued and last scan done after 3 mths was static. So I'm still on meds. 

You have been through a much more confusing time than me. I only hope some answers are found for you soon. Take care love xx💕

[Gillyflower]

Hi Mel and Liz,

Thank you so much for both your detailed replies - its so reassuring to hear they do get these things wrong and I'm not alone in wanting to challenge what I'm being told!  Half the battle is trying not to feel guilty while I put a complaint in as I don't want to seem ungrateful but at the same time, I rarely get the information I need at once to help me make a decision.

I will definitely continue to query and chase this up until I have an answer - I have a feeling that my clinical team either aren't telling me something or there is a lot of guesswork going on, either way I'm determined to get to the bottom of it now!

Love and hugs to you both too, hope you are both doing ok ❤️ 🤗 xoxox

[lovemama]

Hi Gillyflower,

I have a similar liver issue. In 2011, my onco told me there was a lesion in my liver. He specified after MRI it was not cancer but a polyp and probably it was there since birth. However, they would monitor closely. My mom (also had bc) had the same in her liver and also was told it was not cancer. 

In 2018 Sep, I was diagnosed sbc and was told there were lesions in my heart, lung, sternum, abdominal lining, liver. Up to now,  I have changed 3 onco.

(1) 1st CT scan after 4 cycles chemo (Jan 2019),  my 1st onco said all lesions shrunk away except the 2 lesions in liver but she had no worry about it.

(2)2nd CT scan after 8 cycles chemo, my 2nd onco said the liver lesions should be cancer as they shrunk with chemo.

(3)3rd CT scan In July 2019, my 3rd onco said the liver lesions were BEGNIGN.

(4)4th CT scan in Dec 2019 showed 'CLEAN'.  However, I challenged and said my last onco told me it was cancer. My 3rd onco then said MRI can tell but this would not change my regime.

(5) The 5th CT scan my onco put a statement "cancerous liver lesion". She tried to explain there was the confusion bcoz the lesions are a nodule...I then said but in 2011 I was told it was not cancer after a MRI. My onco said I didn't tell her this and she would change to "unidentified lesions". I asked for a MRI but she said only when a increase in size or number.

(6) the blood test two weeks ago showed my tumor marker CA15-3 further dropped to 13.2.

So I think you may wait until you get the MRI result (which should be in soon ? in a week ??) and based on that then you can work with your medical team for the best treatment plan for you.  

ps. (1) I totally understand where you come from. I concur they should not first stop Pablociclib then MRI.

(2)I am not any medical. I just guess your onco had asked for 2nd opinion. Probably the new lesions showed a different shape (speck??) on your scan compared to others.

Hugs, MelMel

[Liz0418]

so sorry you are in this dilema and as you say scan is so vague on what lesions in liver are and also the fact that they are small. I am on palbococlib since may 2018 so 2 years with now progression to secondaries in both lungs base of spine and pelvis. Initial scan at 3 months showed 4 of 6 tumours smaller. since the I have had scans 3 to 6 monthly which sometimes show ambigous spots which my oncologist is quite dismissive about. Is there no way you can discuss this with your oncologist via her secretary or whoever is standing in for her. I am continuing my treatment throughout this last month counts too low so waited a week for repeat bloods which were ok was on 125mgs now on 100mgs for past 3 months because of 2 low sets of neutrophils being too low. I really hope you get some answers and surely they could restart palbo its not a hard process to get funding so at least you are on treatment. I also know some on the forum have had their palbo stopped for now but I am glad to be continuing despite risk of low immunity. I agree they seem to have jumped to a conclusion re liver lesions and not looked at past scans tell bcn you want answers I asked for referral in august 2017 for increase in lump where initial tumour was and was told it was ok  5months later asked again and secondaries were found you know your own body and often the medical profession dont listen to you as a person ,I am an ex nurse, keep pushing to be listened too. Sending love and virtual hugs xoxo Liz

[Gillyflower]

Hi All,

Sorry in advance for the mega long post - I needed a rant as well as ask if anyone has any suggestions lol!

Here's the scenario:

My Palbociclib, which I was due to start 4th cycle tomorrow, has been stopped.  This decision has been made by my clinical MDT team (while Oncologist is currently on holiday) based on the following scenario:

My CT scan results from last week states "Stable hepatic cyst.  No new liver lesions".  However, my Oncologist decided to ask for a second opinion from a radiographer who is reportedly "more specialised in breast cancer".  I am not clear yet as to why she sought a second opinion and I can't ask her until she comes back from holiday.  The second opinion has been added to my CT Scan results as an addendum and it states "3 tiny new liver lesions, highly suspicious." 

Prior to going on holiday, my Oncologist advised me that she had pressed the second opinion radiographer to give her a "how sure are you that these new lesions are definitely mets" answer, to which his response was apparently "99% sure but we can't tell 100% because they are so tiny". 

Here's the tricky part.

I have an (unofficially) diagnosed poly-cystic liver disease (unofficially diagnosed because it was discovered when I was first diagnosed with primary breast cancer in 2018).  My liver likes to produces lots of lumps and bumps, most of which are simply cysts or haemangiomas.  These were always picked up on previous CT scans and throughout my time with Oncology, there is ALWAYS a CT scan that comes back with a result where they have found a "new unidentified lesion" on my liver.  The CT scan from January, where they had confirmed the bone mets, also stated "new unidentified liver lesion" back then and it was left at that, and I started Palbociclib no problem.  My breast care nurse agreed with me that when you compare past CT scans to the latest one, it is clearly evident that those past "unidentified" lesions either disappear or perhaps turn into cysts, nobody can quite say for sure.  The point is, they aren't liver mets (yet).

My Oncologist gave me the option to have an MRI to see if we can glean any further information about the liver or suggested I could switch to Capecitabine.  I was in a panic, so I signed the consent form for Cape and stupidly declined the MRI, but have since changed my mind and contacted my clinical team.  I have told the team that I do not want to start Cape until we have resolved the CT scan results for my liver.  I naively presumed I would remain on Palbociclib until we'd resolved the scan results issue.

MDT have requested an MRI for me asap, and I'll await the results.  When I queried if I could go back on the Palbo if the results were benign or we had new evidence to suggest no liver mets, my nurse told me it was unlikely due to funding arrangements specific to Palbo (apparently they must be stopped at any sign of disease progression, which I totally understand).  I received a copy of a letter from my GP Surgery today which states that there has been "disease progression" as of yesterday.  It looks to me like Oncology have already decided what they think is going on.

I'm pretty angry about all of this and them stopping the Palbo without further full factual information and evidence, as they don't know for certain yet that I have liver mets when taking into account my cystic liver disease.  I feel like my entire clinical team have made a massive presumption and nobody seems to be taking into account that I've been in this exact situation before with "unidentified new liver lesions" which have not resulted in mets for at least the last 2 years.

Does anyone know of any other avenue of complaint I can take aside from Patient Liaison Service?  I hate dealing with PALS as they always take forever and then I find they always manage to skew things in the hospital's favour!

Of course this will all be moot if the MRI is able to tell us I definitely have liver mets this time but I just needed to get that off my chest and prepare to get some support if the lesions are benign and they tell me they can't give me Palbo anymore.

Thanks for reading my drama, I don't know about anyone else but sometimes my Oncology team drive me absolutely crazy with the lack of proper full information that I then have to keep pushing to get!