What to ask oncologist??

Hi Lex, I don't know what to say, I am familiar with some of your treatment, so it would be wrong of me to judge the whole, though a couple of friends are on abermaciclib + letrozole as it can be used at any point with radiotherapy, while still leaving surgery as an option later, But I am very familiar with going to consultations, believing what you've been led to believe leading up to it, was the way forward, only to find, they've change course.

Struggling so much just now. Been crying on and off all day.  It feels like I have two teams working towards different objectives. Surgical team ordered an ultrasound scan of lymphs which lead to a surprise biopsy. And oncologist said that was pointless. Surgeon said surgery after I was stable in treatment.  Oncologist said no, but radiotherapy (and completely dismissed my concerns that I was likely to have a panic attack, couldn't hold my breath for required time etc - so far bone scan is the only procedure I haven't cried all the way through, including CT scan). 

Also... Read the patient info leaflet that came with the drugs - the oncologist missed out SO MUCH about potential side-effects and what I need to be aware of. He said side effects were fatigue and diarrhoea.  I brought up liver toxicity. There's also lung implications, kidney issues, heart issues, increased infection risk,  hair loss. I feel completely underprepared and scared. 

Oncology breast care nurse called. Apparently one if them should have been there too (I'd been told there would be but no-one appeared at the appt), I should of been given information about all this to take away with me, been given a clear plan on when to start taking them, and advice on bowels as constipation is a huge concern given I had a previous ruptured bowel. I have no idea what to do as currently taking laxatives to prevent opiod constipation. Do I stop them?? Diarrhoea seems to be highlighted as a Really Bad Thing, but when is it likely? Immediately? After a while? Does it ease? Is it ongoing? 

Anyway, she's agreed that I don't start new drugs until I've met with her on 10th. And she'll talk to both surgeon and oncologist to try and see what the agreeded MDT plan is. 

Just feel so crappy and confused and.... no-one has mentioned fertility. At all. Not even to acknowledge they're taking away my last chance to have a child. Which faced with this diagnosis is probably a bad idea. But no discussion or even a mention. I didn't have a chance to speak to anyone before starting hormone treatment,  it was done as a memo to my GP. I should probably have caught on at that point. But it was a temporary thing until an oncologist was available. 

I am so so so tired of all of this. And this is life from now on. 

Hi Lex, I am so sorry to hear about your experiences, that's awful the way you have been treated my friend, your surgeon and oncologist SHOULD be working together, to produce the best care plan for you, not  putting their own interests over yours with little regard for your wishes or feelings is disgusting,  I really do hope your oncology nurse can  bang their heads together and remind them their priority is their patients and not themselves, and I totally understand why you're feeling disillusioned, sadly this sort of thing is not unusual, I have used  PALS,  a couple of times when my standard of care was woeful, and with good results, I hope you are sound asleep, and  have a better day tomorrow, how could it be worse.

Eddie xx

Oh Lex, I don’t know what to say. A Specialist Nurse attended my first few oncology appointments but she didn’t wear a uniform or introduce herself to me. It was only when I went to a McM coffee morning and was asking who I turn to for advice that I was told “Your Specialist Nurse” so when I said I didn’t have one, I was told everyone has one. So on my 4th Appointment I asked did I have one and she said “ME” it was the first time she had spoken. I wrote a letter of complaint and things changed dramatically! She called me 3 times a week to find out how I was etc. I was so distressed before that as I felt I was on my own.

Eddie is right the surgeon and oncologist are meant to work together to help form a plan of treatment for you. The nurse should have been there but I hope now she is going to try to make up for that. If not, don’t let them away with it. It is your life, please stand up for yourself if need be and hopefully things will improve!

Thank you both. I'm saddened that you've both had bad experiences. I'm just tired, so very tired. I had to fight not to be left for 2 months with no treatment. I had to complain to get a decent service with my GP. I'm constantly having to check things I've been told they'll do have been done. (Often not, and so back round again.) It feels like I'm constantly battling to get heard. And failing half the time. 

Hi Lex, I’m sorry you haven’t been taken care of properly. Maybe you should complain, not to them but to their bosses, then they will have to take notice because they have to answer to their superiors. At the beginning I was told I was to have a PET scan, then it was chang3d to a CT scan and eventually after months they gave me an Ultrasound. They all thought I had a Basil Cell Carcinoma but I had Malignant Melanoma which they discovered when I insisted on a PET scan because that was what I was told.

Please fight for what you are entitled to. Ask if you were their sister or mother would they be happy with the treatment! I asked that of the Dermatologist and he went white! Good luck. Don’t get tired, get angry!

Hi

I am so sorry your consultation went so poorly. With my treatment plan I found the oncologist wanted me to have radiotherapy but the radiotherapy team rejected it as there are 4 spots on my lung and NHS rule is no more than 3. However one spot has not changed for years and the oncologist said it probably is not cancer but it is too small to be determined. It seems quite common to have divergence between oncology, radiotherapy, and surgeons. They are the 3 pillars of cancer treatments but unfortunately not always pull in the same direction. 
With side effects you will experience some of it at some of the time. Not al of it at all the time. I would keep a dairy and alert the team any changes. 
is it possible to have another consultation with the oncologist again just to go through your concerns? 

I am so sorry you are being messed around especially at this very early stage when information is emerging, no one seems to have the lead, and you are also new to the system. I don’t know whether all health trusts work the same way, but I get the definite feeling that my oncologist is the person in charge of my case. I did have surgery before I was referred to her, but everything since has been led by her. There isn’t always a breast care nurse in the meetings (and a lot of them have been by phone anyway), but it’s also always been clear how to contact the metastatic nurse team (there are 3 of them attached to my consultant). I think it’s well worth while to try to get another session with the oncologist, with the breast care nurse there. Take someone with you, if you can, and don’t let them push you out until all your questions have been answered.

It is horrible but it will eventually feel easier.

Thank you all, I mean that so deeply and sincerely. I'm out the other side of that 48 hour emotional nightmare now, and you're words helped so much. I'm now calm, finding joy in things again. Hopefully the appt on the 10th goes better. Again, thank you. xx

Morning Lex, you are welcome my friend,  it's just not right we have to put up with things like that, but I'm so pleased to see, you've moved on, well done, what strength of character you have shown, and  I think you deserve to treat yourself, have a you day and pamper yourself. 

Eddie xx