Hello All, got ER8 PR8 HER2 3 + 25mm T2 N0 M0 stage 2a diagnosed as a result of routine screening .
Am 58 - HRT for 2/3 years - came off as soon as i found out. Treatment plan has changed because of the HER2 positive result so now will be Chemotherapy. My issue at the moment is the waiting - the last appt with the consultant was 3rd December and she said the Onocologists were very busy and i should be seen within 2 weeks but this may extend. Ok so i get a letter saying 6th Jan 2025 , ok and then start the chemo two weeks after - fine.
Another letter today saying the appt has been cancelled due to unfortunate circumstances with no new appt given - nothing
I am so upset, angry - everything. I was quite angry with the NHS anyway as its so badly run, the amount of post and people phoning me is ridiculous. The information that i do want i cant find
Starting to see something about a PREDICT test - what is that ? I have read all the booklets and i cant recall seeing that being mentioned
so anyway Hello and sorry for banging on but i am so so cheesed off (i would use a swear word but id probably get kicked off.
Anyone with anything similar ?? that could advise - maybe i need a referral out of this trust that i am in i dont know as you cant see what the stats are for the treatment in trusts only what people feel., i would like to see what the wait times are and how they are in this trust at the moment or for past couple of years. They seem overrun with cases
Dear @itbird66 , firstly i am very sorry to hear of your diagnosis and understand your head is in a whirl. This is my best advice - advocate for yourself assertively. Yes most breast cancer units are overwhelmed with cases. Having lost faith in my oncologists very quickly i asked my gp to refer me to another trust which she did. My request was refused because that other trust had no capacity. I even tried to get a 2nd opinion from yet another hospital privately but was again turned down due to lack of capacity. It is not a good situation but its all we have. If you need answers just keep making a nuisance of yourself and seek support from PALS if needed. I had a similar diagnosis to yourself in 2023 and boy did i make a nuisance of myself. I also refused to be rushed and chucked out the door after the 15mins allocated for appts until my questions had been answered. Predict is a database of a cohort of cancer patients which can be used as a tool to determine the benefit of particular treatments. However if a tumour is her2 positive then chemo is the gold standard protocol. It can be offered before or after surgery. I feel for you and wish you well love Tulip x
Sorry your in the “waiting” situation, no body likes it, and it causes so much stress and anxiety.
I’m not in the same boat treatment wise, but I did have the oncologist cancel. Literally had letter one day confirming appointment, about three days later a letter to cancel. But the good news, a new letter a week later, confirmed another appointment for the same date but with a different consultant. So there might be hope….personally I would ring, and ask about it. Just prompt them.
Regarding Predict, if you do a Google search for NHS Predict v2 or v3, you will find the right site. You fill in the boxes with the information you know and it will give you some statistics on how effective certain treatments are. The options are limited but you can change them around a little, for example what your “odds” are if you have hormone thearapy or not. Use it as a guide, there is no exact science when it comes to cancer, as there are too many variables.
Thanks Tulip - I have spoked to PALS today and the woman was limited in her assistance - think if i wanted to book patient transport she probably could do that perfectly but anything else she struggled so no confidence that they are anymore than a tickbox (another one)
the letter i had today was awful , no new appointment, no reassurance - nothing just its cancelled !! its appalling. I have been a great supporter of the NHS but once you need it for something like this , its abysmal, so much rubbish about patient led , feelings, experiences etc and no learning taken from any of it. The NHS app and the Patient knows better/best - whatever that one is - is ridiculous , none of my tests results diagnosis is on there , the appt they have cancelled is not on there - nothing so they are obviously not using the systems that they have to record this information at this trust . Why do we all put with it - why is no one shouting about the way cancer is dealt with , about the way the NHS works or doesnt work ? its just rubbish and i cannot be the only one who is horrified and disappointed that this is what we have to deal with ? I have called the Oncologist Team to see when the appointment is likely to be but they have not responded - they are probably writing to me again telling me some tosh about it - why why why can they not email me or text or whatsapp - so tired of all this rubbish they are spending money on - i want the money to be spent on oncologists and treatment not stamps and printing .
i am angry and sleep deprived (HRT related) so yeah think i will have to see my GP and have a discussion, see if he can suggest or reassure me that this is normal
aw thank you Sal ill try that for Predict. So this is useful information for me unlike the 70 page booklet about to put a wig on and draw eyebrows on. I am just so angry but also i can laugh because its literally how not to run a company/business/service and each day brings something more ridiculous. This does not lighten the fact that i have breast cancer and i am totally at their mercy
I fully understand your frustrations. The staff I’ve met (bar the first oncologist who was thankfully cancelled ) have been wonderful and I know they are working within limitations.
I went through a few weeks of anger, disbelief and everything else under the sun. I’m in a happy spot at the moment - which could be a turning point and gives me hope for a normal return to life.
Hang in there and stay strong, you’ll get past these obstacles. New year and new hopes x
Well that is good to hear Sal. i hope it is a turning point for you.
I dont have a problem with the breast cancer staff and completely understand they are working with what tools they have. Its probably the Trust that i am angry with and the system. Best wishes to you and i echo your positive message about a new year. I havent even got a tree, there is no time with work and everything else going on in my world haha
So sorry you are having such a terrible time with appointments etc.
You can move your hospital, firstly chat with your breast cancer nurse she should know what going on and when another appointment will be scheduled for you. Should you decide to move I think you will need a referral maybe your GP could help you get to a good consultant, I moved halfway through my treatment to Guys in London a few years ago, and all for the better I found them outstanding.
With Christmas ahead, it always delay appointments and throws things out, which isn’t fair and doesn’t help.
I do hope you get sorted very soon, wishing you health and happiness ahead.
@itbird66 if you know the name of the Oncologist you should have an appointment with, ring the hospital switchboard and ask to be put through to the Oncologist’s secretary. Explain what has happened and that you were initially offered an Oncologist appointment 5 weeks after the first appointment but that has been cancelled so you are now facing almost 2 months before starting any sort of treatment. for you x
Completely understand how you feel. Nhs target is for treatment to start within 60 days of diagnosis so this may give you an idea of timescales.
You should have been assigned a breast care nurse to support. Most ive come across are useless but its another avenue for you to contact/hold to account/complain to.
If you dont get answers within a reasonable time its within your rights ti make a formal complaint & theyll definitely get back to you.
Wiahing you luck
Why is nobody shouting about the NHS? Are you kidding - some of us have been howling from the treetops about this terrible organisation that takes all our money and provides very little except total inefficiency.
Your anger is at least positive in some ways. I have been pointing out that UK health care is PANTS for more than ten years but until Covid, very few people would hear anything bad about it and somehow they became immune from criticism. However, this attitude is changing fast as people have started to realise just how terrible the NHS is and that our treatment and outcomes across all areas are much worse than virtually anywhere else in Europe. Until a couple of years ago, the NHS got away with it by playing politics and claiming they didn’t have enough money, but people now understand that if we all handed over our entire salaries each month, they would still claim poverty as it is so badly run. For a capitalist country, quite how we have ended up with communist-style health system is a mystery; we need urgently to change to an insurance-based system and I had hopes that Wes Streeting understood this. He made all the right noises whilst in Opposition but has now reverted to type and is chucking more money down the black hole.
I was diagnosed with cancer at quite an advanced stage in November 2020 and the NHS threw me under a bus because they had become the Covid only service. BUPA saved my life and although I am not well off, I will scrub floors before I give up paying the premiums as without their excellent care I probably wouldn’t have made it.
I cannot think how to advise you other than to say that just when you are in need of care and support, you are going to have to become a dragon and shout and push and shove for the treatment you need. Not nice, I know, but its your best bet.
@itbird66 I am so sorry you are having such a rough time getting your treatment started. It’s a time when even the bravest of us is at our most scared, once treatment begins we tend to just plod on, one foot in front of the other, trying to see light at what seems a never ending tunnel. I was due to have my breast cancer surgery on January 3rd this year but then the junior doctors went on strike and it was postponed until the 31st. Just last week I had a major thoracic surgery but prior to it I needed a PET scan - the appointment for which was cancelled on the day of the scan on three occasions until I finally got the scan on the fourth try. Yes it’s been hard, frustrating, disappointing and downright just blooming awful and yes the best thing is for patients to kick up enough fuss to try and make the NHS a better and more efficient service but there are so many causes and so many factors involved it seems an impossibility. One thing I refuse to do though is to let it add to the stress already placed on my mental health. I do hope you can get your treatment sorted and started quickly and I hope you kick some butts along the way and let them know that you aren’t for messing with. Please go to your GP and get all the help you can - whatever will help you through this - but please look after yourself too, you are the important factor in all of this. Sending you love and quick results, with you in my thoughts xx
