Unsatisfactory appointment

[Beryl71]

Yesterday's phone appointment left me confused so I had to phone up the breast care nurse.

He questioned my next bone treatment not realising it was the 12 weeks that he'd prescribed. He offered me two months palbociclib, so I said I'd been having three and had planned my life around it.

He questioned my calcium levels and whether I could have my next zolondronic acid infusion. When I said I always have blood test beforehand he didn't seem to know.

And at one point said, you seem to have your treatment under better control than I do!

And this was the consultant not one of his registrars!

What a fiasco. I decided not to tell him about the sciatica I've just recovered from as he might have had me off for more investigations. I'm glad I wasn't looking for advice and support.

[Titaniam_Turtle]

I am sorry your appointment went so poorly. I was confused just reading it. I saw you were from the UK and I am from the US so some of the terminology is different. We do not have anyone called registrars. What do they do? Also, I was curious about the zolodronic acid infusion. What is that and what does it do? I enjoy having people from other countries in this group so that I can learn about other treatments. By the way, I hated Tamoxifen. I only took it 1-2 years. I can't even remember. I used to say to myself, life saving, before every pill I took. It was 10 years ago when I started and all the literature said it was a cure. I was diagnosed with MBS after just 2 years of my original diagnosis. I hate to hear that you made the 10 years and yours came back. What a shock that must have been.

[Beryl71 in reply to Titaniam_Turtle]

Registrars are more junior doctors in the team .The zolondronic acid is for bone strengthening.

I had 10 years tamoxifen. I had very bad side effects, probably because I was pre menopausal at the time. I was told I was protected for life but that was not to be! Yes it was a shock to get my diagnosis, but at least it was an explanation for the strange symptoms I had. And I really had felt like I was going downhill.

I too like the international element of this group. X

[mariootsi in reply to Beryl71]

I was on letrozole for 4 years after initial dx and it was supposed to be a cure! Well, that didn't work!

[Nocillo in reply to Titaniam_Turtle]

Zolodronic acid is Zometa. Used for bone strengthening. It’s an infusion every 3 months generally. I’ve been on it for 7 years and it’s doing a good job.

[Beryl71 in reply to Nocillo]

That's good to know.x

[Ursula_I]

Sorry to read this. Also UK here. When I spent time in hospital 6 months ago, I got the best care from the junior doctor who was amazing! Very knowledgeable despite being only 1 year out of university. Very present whereas I saw my consultant only once in the eight days.

More recently I've been seeing the registrar at my oncology appointments more frequently than the consultant - also much better 'bedside manner' than the consultant. I've considered asking to change consultant but I know they all work in teams and treatment decisions come from all of them not just him.

Furthermore the pressure of their caseloads means they only look up your notes when you're right in front of them. Happened with both registrar and consultant. So I'm expecting the same on Wednesday when I go to my post-scan appointment.

Lucky you being able to get hold of a breast-care nurse... in my area you have to leave a message and sometimes they ring you back, sometimes not! If I have an urgent question I ring the nurses on the oncology ward!

Very different experience from when I was bring treated privately for the primary cancer. Immediate access to both BCN and consultant (via secretary). However, it was actually the same consultant and at the time I thought he was good. My eyes have been opened!!! I somewhat blame him for my progression because of his lack of interest in me / my symptoms over the five years.

Oh well. For you I wish you all the very best. As I said, for myself I trust the fact that treatment decisions are made jointly by the team so you're not dependent on just one person. Sounds like you are a great self-advocate too. FWIW I also have the zoledronic acid every three months. Not Palbociclib tho as I am HER-2 positive.

Wishing you strength and hoping the sciatica is not too bad... (my friend swears by her "Sciaticalm" machine).

[Beryl71 in reply to Ursula_I]

Thank you for your lovely reply. X

[wendle3007]

Hi Beryl - my experience of the registrars has been awful, mainly because it's generally a different one each time who only knows what's in my notes and usually cannot actually "do" anything. Fortunately my "actual" oncologist is on the ball and everything he says will happen does happen.I just want to check about the Palbociclib and your saying "3 months" - do you mean you will only have three cycles of it? I was told I would be on it for as long as I tolerated it and as long as it was working - I'm due to start my 8th cycle next week. I'm on a different bone treatment (Denosumab/Xgeva) so can't comment on your treatment.

Regarding the BC nurse, does your breast unit have a BC nurse specifically for patients with secondary cancers? Mine does and she is my new Best Friend and attended the most recent oncology appointment with me.

[Beryl71 in reply to wendle3007]

Thanks for replying, I've had a few registrars and inevitably they don't stay long as they move on to something else. The three cycles is how I get my palbociclib , three months at a time. I started in May 2020 and started with monthly appointments. I feel less pinned down if I can have three months at a time.We now have a new MBC nurse, we'd been without one for about a year. She's now sent me all her details. X

[PJBinMI]

When I read your note, I wondered if perhaps our doctors hate telephone appts as much as I do! and whether they have a chance to look at our records just before they talk with us. This pandemic has sure made health care more complicated, and not in a good way! I'm glad you had access to a bc nurse. I hope that in a few weeks you can look back at this and know it hasn't had any impact on your "big picture" with MBC! Sending love and friendship across the pond...................

[Beryl71 in reply to PJBinMI]

Thank you. Yes I could almost hear him searching out the information, there were long periods of silence. X

[mariootsi]

Yes that is very disappointing. Sounds like he didn't review your case before speaking with you!

[Hidden]

That is very frustrating.