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

Living with secondary breast cancer Supporting each other and sharing experiences
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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!

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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

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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

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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 :two_hearts:

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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