Is this just how this process is for everyone?

Hi LM70 , sorry you’re feeling so unsupported. I’m not surprised, it really does seem like you haven’t had much support at all so I think you’re right to feel aggrieved. I’m happy to outline the contacts I’ve had over the 6 plus years since my diagnosis. But before I forget, I’d definitely want more of an explanation re why you were initially told you’d have CDK inhibitors and bisphosphonates, but never got either. I assume from what you’ve said that the plan changed once your pathology results came in but this doesn’t seem to have been explained to you at any point. I feel this really needs clarifying. I wonder if it’s worth putting your query on the Ask a Nurse section on this website. And/ or phoning the MacMillan helpline to speak to someone? I did when I had a query re work and they were very helpful. 
So re contacts and monitoring, it seems to vary hugely according to regions. 
I saw my oncologist in person pre Covid - Anastrozole prescribed and 3 weeks of rads. Oncologist requested a dexa scan. As it showed osteopenia, I have repeat scans every 2 years which my GP requests (when I ask for it, it’s not automatic). Had a follow up oncology appointment 10 weeks post rads. Annual mammograms were automatic for 5 years and I also saw a breast surgeon a month later. Feel very lucky as I think this is rare. It was very reassuring. In between annual mammograms I did have a couple of ‘blips’ - nipple discharge and skin infection on treated breast. For the nipple issue I phoned the breast clinic, left message and a nurse phoned back. Got appointment with surgeon, had ultrasound, nothing found, still a mystery! The skin infection was dealt with by my GP (antibiotics). 
Sorry so long! Can’t be precise these days, I blame the Anastrozole…. 
I was never spontaneously called by breast nurses or GP, but feel I was able to access them when necessary. No monitoring re Anastrozole - I did ask GP for a medication review a few years in, had phone appointment with the practice pharmacist who quite reluctantly agreed to order blood tests. Any further blood tests have been for unrelated things. 

Not sure any of this is much help! I’m wondering about other sources of support: Maggie’s centres (I had ear acupuncture at the one in Addenbrookes to help with hot flushes); Future Dreams House in London is wonderful and does online stuff as well as in person if you’re nowhere near. Sending love and a big virtual hug, HFxx

I am so sorry you feel like that, its dreadful that you have had such little care and support!  Are you in a city?  I am in Warwickshire, and I couldn't have had better care than from Warwick hospital, and also occasionally from Coventry and Stratford hospitals.  I had lots of support and a number I could call at any time until 6 weeks after chemotherapy finished.  Then I was referred to my doctor, but I still see my oncologist occasionally.  All hospital letters are also being sent to my doctor, and I had a message from the surgery to say that I could contact them for support if necessary.  I am now suffering from an inflammatory bowel disease brought on by the chemotherapy, and the doctor and Warwick hospital are still caring for me well.  I wonder if it's because you have never been to your doctor's surgery or contacted them that you are being forgotten?

Goodness me LM70. You must feel so alone and confused by all of this.
My NHS trust has a fantastic breast care navigator service, offering really great support. Google about cancer care for your area, you may have that too? If your BCN isn't being responsive ask to speak to the supervisor of that team and request to be reassigned to a different nurse. The BC nurse should be there for you, to answer questions and follow things up for you. That is their role. f you get nowhere with this then complain to the Patient Liason Service.
This is such a worrying time for you, and you deserve, and are entitled to, much better support. This isn't how it is for everybody. I have had numerous bumps along the road, things have gone wrong, test results have been lost, misinformation has been given out, but by and large the support and care has been, and continues to be, excellent. Postcode lottery perhaps....

I am very different from you, experience of system, age treatments, etc, but I did struggle with the letrozole. It was changed to exemestane, and that is marginally better. There was a Macmillan centre in my hospital and I had very good support from them. If there is one near you, I do think a chat with a nurse there might help. They can advise if nothing else, on how you can get some more structured attention. Alternatively, ring the nurse service on this website.  I would write directly to your oncologist clearly laying out your situation and what you would like. Ask for a face-to-face appointment. You can also ask for a copy of your medical notes. If none of this works, complain to PALS, and if there are other oncologists, consider asking for a change. You sound like you have had thoughtless and appalling treatment. There is also your local Health Watch that might be able to help.  

I feel for you and trust you get some face to face consultations and end up with a clear understanding of what your situation is, after all at the end of the day you are supposed to take part in the decision-making about your health and body. Good Luck

Hi all

Thank you for your replies, you are all fabulous and it has been really useful. I am quite rural, Welsh border so not in a city. Maggie's is a little too far away for me, I think Coventry or Bristol, but I am aware of how amazing they are and that online support is available for us. 

After my little whinge I decided I should be more proactive and went through a form on the surgery website to request a referral letter for a Nuffield DEXA and the GP texted me within a couple of hours to ask a few questions and has requested an NHS DEXA and bone health bloods for me. I have emailed the hospital BCN nurses and asked for copies of my oncotype and pathology reports as well as I have never seen them and it may be that I decide to get a second opinion privately now or at least be more educated about what my disease was. The whole thing did fall apart at the results stage, both sets were wildly late and I had two appointments cancelled last minute because they weren't ready.  

For the CDK, it was the main reason why I emailed the BCNs to ask if my treatment was over. It was mentioned in a letter to the GP that I was sent a copy of and again when I saw the oncologist who told me to have my teeth checked (I did and had one removed as a precaution) but all the research I have done mentions that they should be started within 3 months of commencing AIs or 3 months of finishing radiotherapy and I will be out of time by the end of August whichever parameter is used. The nurse's reply just reconfirmed my August appointment and said the oncologist would talk to me then about whether I need more treatment. My tumour was 5.5cms so qualified there but micromets only so that may be why they changed their mind (remember the oncotype wasn't back the only time I saw the oncologist, it was ready I think 8 weeks after surgery and I got a score of 3, his secretary called me). Realistically, to take a CDK now and suffer the side effects when the time frame for their usefulness has maybe passed and they might not work? It seems unlikely they will prescribe them. 

I think the process has just been very disjointed, too many people and three hospitals involved. The nurses have replied quickly to emails but I don't feel like they answered the questions I am asking and I am very concerned the GP has had to book the DEXA when I now believe the oncologist should have done that, I am only 5'1, had a low BMI all my life and a menopause at 36. I am going to try the letrozole again when this hot spell has passed as I think the worst of the effects were peaking 2 weeks after my radiotherapy and that could have had a hand in it. I am aware how important they are, but would like someone to actually explain the difference in them and which would be most suitable rather than just send me more bloody leaflets. That may be where a private oncologist comes in.

Thank you again for all your replies, it really has spurred me in to action. I do have to bear some responsibility and make more noise and the quick response from my GP was really heartening. 

Hi LM70,

That is really not good after care. I'm not surprised you are feeling lonely. I think that is a good idea getting your pathology report and getting a second opinion I would be doing that. Do you know what grade cancer it was? I felt like i had to keep asking about starting bisphosphonates and chasing timelines and like you i was told to get a dentist check up first but then felt nothing happened for months, but I'm on herceptin so i have to go in every 3 weeks for the year so much easier to chase face to face. In regards to letrozole I'm on this and I have really modified my diet cut out diary and other stuff and drink very little alcohol and loads of water and I've found this has helped with side effects massively.

Nobody likes to feel  they are being a pest but i think you need to be!! 

Xx

Hi, my journey was very similar to yours. Not great but I decided to stop the Anastrozole after 2 years and I finally have my life back. 
I too have mostly had telephone consultations and not an awful lot of actual support. Was basically told that it my life and they can’t make me take the tablets if I don’t want to.