Meetings with my Oncologist

User

Posted 15 Dec 2015 at 19:36

The purpose of this post is to explain how I try to get the best possible use out of every meeting I have with my Oncologist. I hope it may be of use to others.

Like I'm sure everyone else does I always go to these meetings with a written list of questions. I also take one other thing with me, it's what I call my health progress report. I fill it in prior to the meeting and it's the first thing we discuss at the meeting. It helps me quantify what has changed since the last time I saw her. My Onco seems to like it. I've copied it below. Obviously the row titles will vary for each individual.

Current state of health – progress report

In the table below a rating of 0 means bad and 10 means excellent.

Item 2/1/14 26/6/14 30/10/14 30/12/14 29/1/15 2/7/15 26/8/15 22/10/15

Physical condition 10 10 8 8 8 8 7 8

Mental condition 10 7 10 8 10 10 10 10

Weight gain 10 10 10 9 10 10 10 10

Bladder 7 7.5 7.5 4 9 9 9 10

Bowel 10 10 10 7 10 9 10 10

Fatigue 9 9 9 9 9 9 8 8

Strength/muscle loss 10 10 10 9 9 9 8 8

Breast swelling/soreness 10 10 10 10 10 10 10 10

Bone pain 10 9 9 9 9 8.5 8.5 9

Hot flushes 9 7 7 7 8 8 7 7

Lymphoedema 10 10 10 10 10 10 10 10

Memory/concentration 9 9 9 9 9 9 9 9

Edited by member 15 Dec 2015 at 22:43 | Reason: Not specified

User

Posted 16 Dec 2015 at 06:26

looks a good idea but my problem is I seem to see a different registrar every time I go

regards
nidge

run long and prosper
'pooh how do you spell love'
'piglet you dont spell love -you just feel it'

User

Posted 16 Dec 2015 at 08:42

Thanks, that's a really constructive idea. Even if we don't see the same person each time, it will still give them an overview of any changes or trends.
Marje

User

Posted 16 Dec 2015 at 09:22

Excellent idea, well done.

Every time we go we have a booklet to complete and the scores are laid out like yours and covers everything from toilet to ED to fulfilling and satisfactory sex (not just being able to get an erection) to general/ mental health and well being.

Works well for the docs because they have the previous results in front of them, but for us, we always rack our brains and try to remember what the scores were previously. It doesn't matter in the wider scheme of progress since we always answer as honestly as possible, and it's the now that really matters but it would be good if we had our own copy.
That couldn't happen of course since it's quite a large booklet and costs would be expensive to duplicate.

We can't control the winds - but we can adjust our sails

User

Posted 16 Dec 2015 at 10:13

I Agee this is a great idea and I'm going to start it.
As with Johson I have to complete a questionnaire every time I see the Oncologist.
I also insist on getting a copy of all my blood results and am trying to get a copy which I can review before my actual consult. I'm finding this to be like getting blood out of a stone because even tho my Onco has agreed to the nurses are so busy it's difficult.

I'll keep trying tho.
My next consultation is January

Cheers

Paul

User

Posted 16 Dec 2015 at 14:57

Hi all haven't posted for a while
Looks a good idea I keep a similar thing but with not as much detail .
Been to see my Oncologist for 6 monthly check today and got good news P S A down again to 0.13ng/ml last reading 0.30ng/ml , he dosen't want to see me until Oct 2016 and if my bloods are OK it will be telephone appointment which is good saves travelling and parking problems
Things are going good at the moment, hope everybody is OK.
Good luck.

KEEP POSITIVE and CARRY ON

Cheers
Alan

User

Posted 16 Dec 2015 at 16:27

Originally Posted by: Online Community Member

I also insist on getting a copy of all my blood results and am trying to get a copy which I can review before my actual consult. I'm finding this to be like getting blood out of a stone because even tho my Onco has agreed to the nurses are so busy it's difficult.

When I visit my Onco every 8 weeks I am given two bloods envelopes for bloods to be taken by my GP Practice's nurse and then sent on to the Royal Devon and Exeter hospital every 4 weeks. There is a space on the envelope entitled 'For EXTRA copy reports, state doctor and location'. If I wanted those results to come back to my GP Practice as well as going to my Onco then I could easily add the relevant details. Could this be a solution to your problem?

User

Posted 16 Dec 2015 at 16:49

Every patient is entitled to see his or her records. I urge all to make a point of it at Oncology and other consultations. Also try to break the bad habit some have of updating your GP after an appointment but not copying in you! This is all about patients owning their treatment and retaining control, with the medicos being expert advisers.

AC in Northants.

User

Posted 16 Dec 2015 at 17:18

I do so agree, Auld Codger. Tony now gets copied in to the follow-up letter to the GP, although we sometimes have to remind them to do this.

Re the blood tests: Tony gets the bloods done at the GP surgery and they send it through to the hospital. Then the results come back to the GP. Sometimes this has meant he can get the result before the oncologist consultation, which can be helpful if it's a shock result that we need time to absorb. The GP seems happy to let him have the whole blood test print-out if Tony calls in for it, which is useful.

From now on, the cancer unit who dispense the Enza will phone Tony the day after the monthly blood test to (hopefully) give him the all clear for the next 4 weeks of the drug, which will be delivered next day. They'll tell him the PSA and ALPs readings, and he can get the print-out of the rest of the stats from the GP. They also need to know his blood pressure, which he will get done at the surgery along with the sample but, weirdly, the surgery cannot or will not relay this direct to the hospital, they'll write it down and Tony can tell the cancer nurse on the phone. When NHS policies result in such failures in communication, all the more reason for the patient to be kept informed!

Tony has never had any kind of assessment form of the sort some of you mention. They just ask how he is, in a general way. Perhaps now he will consider creating his own.

Marje

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