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Oncologist check up call confused and then some.

9 REPLIES 9
Anniej
Community Champion

Re: Oncologist check up call confused and then some.

Exactly! Your body, your life! Ask for a face to face. Change your Onco. Change your hospital. It’s your right to have the best treatment .  I know we’ve had people from Yorkshire and Cumbria attend the Freeman in Newcastle. It’s a centre of excellence for Cancer. My thoughts are with you. Good luck. Ann x

Cumbrian Lady
Member

Re: Oncologist check up call confused and then some.

@AnniejThank you I have never gone with the belief you can be called 'cancer free' we can only hope and keep carrying on.
The trouble is I have never met my Oncologist face to face all have been my telephone, and then only twice.
He has booked me the scan for the lung nodes and a blood test for the blood clotting I will wait for those results and then take it from there.
Personally, I think with Covid, no GPs appointments if I ring them they refer me back to the hospital - the whole thing is a mess I am just thankful I got my treatment - but as we all know it does not end there for  us.
Cannot worry and let this get to me, I need to stay strong and focused.

Much appreciate your reply and I will get to the bottom of all of this😁

 

Poppy xx

Anniej
Community Champion

Re: Oncologist check up call confused and then some.

Hi Poppy, where I’m being treated I’ve never heard anyone use the term cancer free! The new terminology appears to be NED ( no evidence of disease) as there is always a chance that cancer will return. In some cases of BC the % can be quite high. If you are happy to wait for him to explain then that’s ok. All sounds a bit fluffy to me though. Sit him down and sort him out next time you speak to him. You aren’t stupid, you’ve been through a lot , and in my opinion a bit of plain speaking wouldn’t be amiss! Ann x

Cumbrian Lady
Member

Re: Oncologist check up call confused and then some.

@scientistamafier Thanks for your reply - but no he was referring to the chemo and how lumps can still shrink weeks/months after the treatment is over - but then went on about the chemo not always working and the cancer could still be there.
But my surgeon said she had removed ALL the cancerous nodes and the two breast lumps (which I take his comment was about) telling me that I am technically cancer-free.
But he confused me and confused himself as he also had me down as having had treatment for lung cancer which is not so - so he must have been looking at someones else's notes at the same time.
I shall wait until the scan and bloods, it is impossible to hold such a detailed and important conversation over the phone, the whole process is so draining without having your head filled full of comments that you cannot understand and in one instance were not even about me.

 

Thank you much appreciated.
Poppy xx

scientistamafier
Member

Re: Oncologist check up call confused and then some.

You don’t say exactly what treatment you have had so I may be coming at this from the wrong angle. I wondered if your consultant meant that physically things may change and settle down now your treatment is over. For example surgery scars will fade, swellings might shrink, etc. 

Cumbrian Lady
Member

Re: Oncologist check up call confused and then some.

Thank you Evie
I am lucky, as I can put things on the back burner something to do with my other health issue, and some solid counseling along the way, one step at a time is how I have come to view things.
At the moment I am watching tennis, been doing my garden and some craftwork during the week I love to make things there is something so therapeutic in taking some bits and pieces and turning them into whatever.
I have my little get-together on the 19th for the friends who helped me along the way, because of covid it was emails, phone calls, flowers, chats on the phone - but boy did they mean a lot and it was good to laugh. So we are meeting in the local tea rooms also coming is Margaret we were in adjoining beds after surgery and met up again when having our rads - we spurred each other on nice to have someone who understands in their own way what you are going through.

I do accept and understand that you can never be told you are fully cancer-free not even the specialists have a crystal ball - all we can do is keep going and live for each day.
I have truly surprised myself over it all, before the diagnosis it was a word that scared the hell out of me I thought I would crumble if ever told I had it.
Maybe it is something that many people come to, you cannot waste your energy wondering and worrying, you get on that treadmill and keep going. I managed to take it all in my stride it was not all rough sailing, positives can and do come from all manner of life.

Anyway enough from me the tennis is hotting up😁 plus one of my cats wants feeding.

Lots of love
Poppy xx

Evie-S
Community Champion

Re: Oncologist check up call confused and then some.

Hi Poppy - thank you for your kind reply. You are very wise in your approach, taking one day at a time is the best way - I often advise others to do that, but forget to do it myself! I read somewhere that if we worry about something and it turns out to be ok then we have wasted time worrying, and if it isn’t ok then we have worried twice about the same thing. Wise words - of course easier to say than put into practice.

I would hang onto the words your consultant has used that you are “cancer free”, that’s a good positive description. They don’t use these terms lightly. You are so right that we need a strong head and body to go through all this, as well as a degree in understanding what they mean. I remember one letter after a mammogram was worded so badly that I wasn’t sure if they had found something or not 😳

I’m happy to chat anytime you need while you wait, the wait time is always tough.

Hugs, Evie xx

Cumbrian Lady
Member

Re: Oncologist check up call confused and then some.

Hi Evie-S
Yes, they do have their own language😉 you need a degree to decipher it.
I shall wait until the scan etc - after all finding out what he meant will not change anything at the moment outside of perhaps spook me more and what good will that do?
I shall carry on in my usual way and wait to see what is around the corner - then face those challenges if and when they arise.
It is such a journey isn't it, you certainly need a strong head as well as body to keep going.
Thank you for your reply means a lot.🌻

Poppy xx

Evie-S
Community Champion

Re: Oncologist check up call confused and then some.

Hi Poppy - Doctors/consultants often seem to speak in what I call “Doctor language”, and they forget that their patients don’t always understand. I’ve had appointments and letters where I’ve had to ask them to clarify as their terminology can seem alarming sometimes. I’m sorry I can’t help with your question but would suggest you either try to get hold of your oncologist, or sometimes you can speak to their secretary and email a question for the consultant, or call the nurses on here for advice.

I hope the bruising on your stomach clears up quickly and that all is well once you have had your scan. Evie xx

Cumbrian Lady
Member

Oncologist check up call confused and then some.

I had my call from the oncologist yesterday as it is several weeks since I finished treatment.
He is arranging a scan to see how the 2 (indiscriminate nodes) as they called them on my lungs are doing as well as a blood test as I have bad bruising on my stomach - he was chatty and friendly and booked a face to face in 3 months time (although this may change depending on the scan results).

He said Technically at this moment in time I am cancer-free (whatever that means) but went onto say things settle and alter once your treatment has settled down? - confused I am.

Poppy xx