Firstly I must make clear how supremely grateful I am for all the treatment I’ve had since getting an unexpected BC diagnosis last year. (Being diagnosed when you think you’re fit and well is a weird thing to get your head around first of all - and while someone is telling you what your treatment will entail, your brain refuses to engage properly!)
So now I’m due my annual check-up but I’m feeling torn between gratitude and also frustration with the system!
Letter comes about annual mammogram, make appointment…no idea what to expect. A friend in a different part of the country told me she’d had her mammogram, plus an ultrasound, seen her consultant and had the results on the same day. Minimum stress.
However, I rang my breast care team to find out that I will just have a mammogram, speak to no-one (despite having rungs my nurses several times about late onset pains) and will have to wait 2 to 3 weeks for the result which will come in the post. The nurse said they’d probably ring me if there was any problem rather than put it in a letter. I find all that a bit upsetting and said how it made me feel but was told this is the procedure for everyone. So I immediately feel guilty for making a fuss.
I keep being assured that my pains are just treatment related but sometimes I don’t feel they’re really listening - I explain what and where but over the phone it’s difficult and sometimes we’re at cross purposes or they’re not understanding what I’m trying to describe! Anyway, the nurse said they don’t offer any treatment for these things - just take painkillers and perhaps I should see my GP about it. However, I’m pretty sure if I went to the GP he’d refer me straight back to my BC care team.
Eventually the nurse said she’d make an appointment for me to see my consultant after the results of my mammogram. This feels like it’s only because I’m making a fuss.
Is it really asking too much to have a meeting with your consultant as an annual follow-up after BC surgery and radiotherapy particularly if you’re having pain issues??
You’re preaching to the choir here Geeps. I had one face to face meeting with the surgeon, one face to face meeting with a Registrar oncologist, two telephone appointments with registrar oncologists and then discharged to the “self referral” protocol, which I take to mean that I can ask for an appointment if I feel it necessary but only following a discussion with the BC nurse, if you can find her. I admit the discharge appointment I had with the nurse over the phone was helpful but that particular nurse has since moved on. I did ask for an appointment following my discharge and, once again, was given a telephone appointment with a registrar oncologist who seemed quite annoyed that I was wasting her time by asking questions that the BC nurse could not answer. Nor could she in some cases and said she’d have to ask the Head of Department and get back to me. I’ll leave you to guess whether I was got back to.
With regard to the first annual mammogram, after it had been done, I was asked to take a seat for them to check with the reviewing doctor whether the prints were good enough. I happened to be sitting outside the doctor’s office so she came out and asked me if I wanted to see the images, which I did. I only saw the right breast, the one which had had the tumour, but she said it looked clear and then added that I don’t have very dense breasts so she wouldn’t have thought I’d have breast cancer. Yes, well I did. She then said that protocol dictates that two doctors review the images and she was on her own so they’d be reviewed in due course and a letter would be sent in 2-3 weeks. I’ll leave it to you to guess whether I got a letter.
I have now decided that, unless a recurrence or new primary is discovered, I am pretty much done with oncology. Whilst, like you, I’m grateful for the treatment I have been given, particularly by the surgeon, I have got nothing out of oncology except a feeling that I was being a nuisance for asking questions and a blunt expectation that I will do what they’ve told me to do - which I have to date. I don’t expect to speak to them again.
Thanks so much for your reply Tigress - it helps. You sound frustrated too! I admit I did feel abandoned when I was ‘signed off’. And that was after the more or less opposite feeling - having felt overwhelmed and slightly ‘bullied’ during diagnosis and treatment! I use the word bullied carefully, I just didn’t feel I had any choices - I felt out of any control. That is until I met the oncologist who actually asked me how I felt about treatments on offer. For the first time I felt like I, myself, mattered in the process!!!
The annual check up seems unnecessarily cruel - particularly when compared to my friend’s treatment. She also had a single assigned nurse who knew her - no looking her up before engaging with her!!
It just stirs up old anxieties when it shouldn’t need to - I was told at the very beginning that they KNOW the waiting is the worst!! My late onset pains are dismissed and I’m not even granted a routine face to face with a nurse. Isn’t it hard to describe symptoms over the phone?! I keep pointing to bits and waving my hands in the air - to the phone!!
I think I might put it all in writing eventually - with a SAE for a reply! Will it help to improve things for others? Worth a try I guess.
How are you now? Are you having to take the horrible AIs that I refused? All the best for the New Year…
Hi there,
Felt well looked after during treatment for my primary 16 years ago. Was diagnosed with secondaries over 4 years ago. I think I need appointments more now than then, as my situation is so much worse, but we have no secondary nurse, and the primary bc nurses don’t see us. I haven’t seen an oncologist in person since January 2020. Appointments are video or telephone calls, varying frequency over the years. It sucks. Cancer sucks.
The period after primary treatment i found hard, getting used to a new normal took some time.
All the best to you.
No Geeps it’s not. You should be seen and have blood work done and possibly a scan depending on where your pain is at and what it feels like. Pain should never be ignored by professionals when you have a past breast cancer patient with it.
Hi Geeps, yes I am taking Letrozole. I started it in late Oct 22 but stopped taking it the following February because the fatigue I had, from a mixture of rads and Letrozole, was so debilitating, and lasted so long (5-6 months), that something had to give. I then got the collywobbles about mets and started taking it again in July and am still on it. My SE are a bit of joint pain and an expanding waistline. If either get too much I will stop it. The fatigue, brain fog and low mood seemed to lift after a year so am not doing too badly thanks.
Like you, in the early days, I was told what my treatment would be - I was having 5 days of rads and Letrozole for 5 years. No explanation, no mention of SEs, no long term prognosis. Just went along with it as I was so relieved not to have chemo.
During the aforementioned discharge appointment with the nurse, we did my Predict score. Very little % improvement for me in taking the AI and she said if I wanted to come off it I should speak to the oncologist. Hence my requested appointment after discharge. It was during this when I asked my five questions and she could not answer a single one in a meaningful way. Nothing definite just waffle. That was when I realised that they have no more idea than we do about our likely outcomes. It is completely reactive and I felt that the brick wall I was hitting comes from their realisation of that.
Now you MUST insist on seeing someone about this pain. It may be post-surgery fallout, it may not. The point is that it is a source of great concern for you and you should not be left twisting in the wind like this. If they are saying ‘see your GP’ and the GP feels that you should been seen by oncology, then surely they cannot ignore a referral from him/her? In extremis could you contact the PAL department at the hospital and explain your situation?
Hi Ladies.
There appears to be a protocol of discharging primary breast cancer patients back to the care of their GP once all the active treatment is over.
The BCN should discuss this with you and provide contact details for the BCN team. You will invariably end up leaving a voicemail.
I have to say that i had a similar experience. I found out about the discharge back to GP by letter. Fortunately it was a couple of days before a face to face clinic and i did not mince my words. A follow up appointment was scheduled for 12 months time to align with mammogram.
Shortly after i received a letter from BCN to say i was being discharged back to GP and appointment had been cancelled.
As i’d had issues with the BCN on additional occasions I decided enough was enough and sent in a letter of complaint to PALS which they lost… So i phoned them to ask about time scales they set for replying to complaints and emailed them everything.
A suitable response was received within the hour and my annual appointments re instated.
I dont think its too much to ask to see a specialist on an annual basis.
For my last BC nurse ‘sign off’ appointment, I refused to do it by phone. You cannot do such an important communication without having time to think, ask questions and interpret replies while being able to look at each other face to face. Lots can be read in body language. It was a good meeting. I was told that although I was on my own now until my annual check up, I had the reassurance of the important BCN phone number and could ring it any time! Well, that’s quite different to having a scheduled check up when a professional asks how you are! You have to pluck up courage to ring up - and you feel you need a good reason to do so - not a piffling tweak or twinge. How do I even know what’s relevant? Whether I’m being a fusspot? How do I know if they can help if I don’t know the questions to ask?? I seem to get mixed messages…
eg “Don’t suffer in silence - ask if you have any concerns!” But then I finish a phone call feel slightly stupid for imagining they can help with the expected treatment related discomforts and pains that I’d already been told about.
“Talk to people who’ve had the same experience - it helps!” But then when I ask about differences in treatment I get told not to discuss actual treatments with other women - “it’s not helpful!” the nurse said!
I have been promised a meeting with my consultant after the mammogram results (2-3 week wait AGAIN!) but only because I wouldn’t shut up! I almost cancelled it after the call because I immediately felt he’d judge me for making a fuss! But I’ve come to the conclusion that you only get heard if you make a loud enough noise. I really don’t want someone saying “it’s a pity you didn’t tell us about this earlier!!!”
I can so relate to how you went along with everything because you were so relieved not to have chemo! That was my cold fear - but I now know that that was a very unlikely outcome in my case. My husband got the impression that it wasn’t likely at the meeting when I got the BC diagnosis, but all I could remember was the surgeon adding it to the list, last thing, at the bottom of his diagrams that he was drawing for me - just covering himself I suppose in case of an outside chance. But for me it was the biggest, main item on the list!!! Not helped by subsequent chats to BC nurse who kept covering herself by telling me ‘everything is on the table’ until the subsequent surgery results came back.
As to AIs - I am concerned how many people are suffering from a strong potentially dangerous drug with very little advantage to them re BC recurrence. I feel I was lucky to get an oncologist who asked me what and how I felt about everything! He helped me come to a decision and I felt so happy after seeing him! Then the nurse signing me off radiotherapy handed me all the Letrozole paperwork! Not taking it?? She actually questioned whether it was one of their oncologists I’d made the decision with! That immediately made me doubt my decision and worry! Such is the cancer fear that plays with our heads!
My concern with the drug is the extent of damage it can do to thousands of women while it saves only hundreds. It’s a cheap tool to save the NHS a lot of money, but that isn’t always best practice for individual women. Fear trumps our grasp of the probabilities of recurrence. Women with less than 1% recurrence are suffering SE which impact their quality of life because they are scared of ANY chance of recurrence. The decision should be discussed and be given to the individual women, but I see that women are often expected to just take them - no question, and then are just being offered different drugs and/or more drugs to counteract SEs. The drugs and the misery increase which is cruel. Especially with women in their late 70s! I think I’ve just had a rant!?! Such is the game cancer plays with our heads!
The evidence seems to show that breast cancer follow up annually makes no difference to survival, so the practice of seeing women every year to say well done you are still cancer free has stopped so there can be more resources available to check people who have symptoms. So that’s why there aren’t any follow up appointments with consultants in cases of no evidence of disease. I am pleased I don’t have to go to purposeless appointments but I remember going to a consultation on this and some women who had been going to these appointments annually for years for in my view no purpose found this shocking. In the end I got symptoms 19 years later and had a new primary in the same breast. As I also don’t go to mammograms, this was detected by me through breast awareness. Can’t say I wanted to find it, but I did and I am told it is early breast cancer whatever that is!
Seagulls
Good (and very genteel) rant! Believe me, Geeps, I have thought about these things every single day for the past 18 months. So here’s the thing. All indicators point to a very small risk of recurrence for me, which is why I stopped taking it for 5 months in the first year. I hope what I’m about to say is not triggering but it is germane. A lady I’d been through rads with, with similar histology to me, contacted me in June to say that she had been diagnosed with bone mets - it had obviously spread before the primary from which it came had been diagnosed. This sent me into a spiral of fear and panic so I started taking the Letrozole again. SE haven’t been too bad for me and I know that most of them dissipate without long term damage (osteoporosis excepted) once you stop.
It is pretty well documented that AIs can be extremely effective as neo-adjuvant treatments with 4-6 months often being quoted as periods in which tumours can be shrunk, often to nothing, so I have said to myself, in the unlikely event that I have stray cells somewhere in the body, if I take the AI for a whole year, maybe the strays will be killed. So I have worked out, with the gaps I’ve unilaterally taken, that a year comes up at the end of March 2024. This is the point I will take a view. Yes, a Heath Robinson approach but the best I can do in the circumstances.
This is what I was trying to discuss with the oncologist during my requested appointment but everything I asked in order to get information to factor in to my decision was met with “maybe/maybe not”, “no-one can give assurance on that”, “it’s impossible to say”, “ there’s no hard and fast research into that” etc etc all said with a barely disguised irritation. We did the Predict score again over the phone at my request (benefit of AI = 0.4%, 0.9% 1.2% over 5, 10, 15 years) but she insisted that it was their recommendation to keep taking it and she put that in a letter to the GP afterwards.
So I tried to have a nuanced discussion with oncology but just got the brick wall of “you WILL take it”. I want to do one year as a minimum but there is no way I will do the full five years as my DEXA scan showed no deterioration of bone even at 67 (now 68) and I want to keep it that way for as long as possible as I live on my own.
I apologise for keep writing these novellas! In conclusion, the irony is, having very extensive personal involvement in dementia, this is what I fear most, so I have to put the BC into that context too. But that’s another story and one not for this forum …
No need for apology!
My oncologist don’t try to persuade me at all. He set out the risks, listened to my fears about the drugs and let me make my own decision without arguing either way. I was told he was ‘an expert’ on AIs. I remember him saying Oh you would get symptoms! The nurses had said blithely Don’t worry, you might not have any symptoms…!
I still can’t understand how a less than 1% chance is more risk to health than the side effects of eosteogen depletion!! It seems that there are higher risks of incontinence than recurrence! Even elderly women are being put through this regime - why? To get them cancer free (but crippled) when they’re 90?!
I sometimes wonder if they believe their own prediction tools? Why do them if they’re going to persuade people they need to take the drugs anyway??
But it’s difficult to get my head around this idea of ‘mass population treatment results/outcomes’ v individual care. I think mass drug prescription (whatever the individual costs - that’s not their problem) is probably a cheap way to guarantee NHS savings.
I also think that stopping yearly meetings with ‘symptom free’ patients is missing an important point…some women will not report things for fear of making a fuss - but they may be bursting with fears and questions! A face to face ‘how are you feeling?’ would release all this and be beneficial to physical and mental health. Not everyone is prepared to make a fuss over perceived ‘little things’. I am a medical advocate for a friend and I have had to jump up and down to get her heard when she’s too ill to argue her case!!
My husband is having to weigh up drugs v SEs with his heart condition. He has come to terms with the fact that there’s often a ‘one size fits all’ approach and that you have to take your own view on it all in the end as the doctors can’t REALLY give their own advice!!! I hope I can become so sanguine!!!
Hi All,
In my circustances at my annual checkup. 2 years in I reported side effects of Tamoxifen which resulted in my being diagnosed with A typical Hyperplasia which could only be treated by a hysterectomy (as cancer is Er+) then 2 years later after a clear mammogram questioning whether a small lump near the surgery site could be clearly seen. Resulting in an ultra sound (to reassure me) and a secondary BC diagnosis, which came as a shock to all concerned!
Had i had to go through my GP (its a battle to get an appointment) I think i would still be in blissfully ignorance of the recurrence and still taking ineffective medication.
I was also never happy that my GP (with whom i have no regular contact) would be responsible for the decision to switch me from Tamoxifen to Letrozole and ensure that all the relevant scans were done to check bone density.
I’m not clear YT, when you say secondary do you mean it was a local recurrence in the same breast or metastatic?
As for my GP being my first point of contact a) utterly impossible to get an appointment, only ever see registrars (who have the benefit being keen) and b) she knows the Head of Oncolgy at the hospital and seems to be terrified of her. Has impressed upon me that she cannot take decisions about my treatment and after care. So I get Seagulls point but, as you say, there is too much potential for things to slip through the cracks or get delayed this way.
Hi,
Turned out to have also spread to my bones.
Oh I’m sorry. I do hope nothing I’ve written has been insensitive. I suspect anything I might say could be construed at best as cliched, at worst as patronising so I think it’s time for me to shut up.
what a very strange disease breast cancer is and I would rather be breast and body aware than depend on any mammograms or scans that don’t know my body better than I do. I’m quite good at recognising unusual symptoms/bulges etc. In some ways I would prefer not to know. I am still trying to work out what I would prefer to die from Alzheimer’s, heart disease or breast cancer. Seagulls
Part of the problem lies in the first line of your post where you talk about gratitude. Presuming you have been using the NHS,remember that you pay handsomely for what is for far too many an obscenely inefficient organisation with rather poor outcomes. Funding for the NHS now takes far too much of our gdp at a time when its output is patchy and declining. By all means express thanks to individual medical professionals who may have gone the extra mile for you, but otherwise you are simply receiving that for which you have paid.
You now have questions which you need answered so I urge you to press for the information that you need. Yes, it is sad that you have to push and shove and be strong at a time when you are at a low ebb, but this is the only way these days to get your needs met. I urge everyone to sign up for private health care if their circumstances permit. Eventually we will have a government with the guts to do what is right for the country and introduce an insurance-based system which will be patient rather than staff focused, but until then it’s BUPA all the way for me. They saved my life when the grossly inefficient NHS threw me under a bus in lockdown.
Spot on with the GP. We get a different one every time and have no knowledge of each other. I think they’d refer me back if I went to them.
I’m so sorry…how are you getting on now? Thank you for your contribution x