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No news is good news?

User
Posted 05 May 2015 at 08:22
My husband was diagnosed in 2007 and he had a RP , radiotherapy eye at that time but for years later he was told that it had spread to his pelvis and lungs. At the end of March he had a high contrast CT scan. Since the cancer returning he has been seeing both respiratory and urology specialists. But he asked to just see the urologist . Three weeks ago he had an appointment regarding his scan results but he came back with the news that the specialist " did not have the notses an the scan" I didn't go with him as he is very independent. He said that the consultNt's secretary would phone him regarding the results. So fR, no phone call.

He reckons that if it showed a problem they would contact him but he is not keen on chasing up the results.

I feel help,ex and very worried

Any suggestions? Ideas?

User
Posted 05 May 2015 at 12:44

Hi Judy,

 

My Husband is only at the beginning of this journey, if it has spread to his Pelvis and Lungs I would be concerned enough to chase it up after 3 weeks even if there is no change. Also not good that the Consultant didn't have the notes regarding the scan and really I would think that he ensured his secretary would have called within a couple of days to re-assure your Husband, I would try and get your Husband to call and if he and get the results as there may be a mix up. Good luck and hope you get a good outcome.

 

Trish

User
Posted 05 May 2015 at 14:18

Hello Judi

My husband is very much like yours and doesn't like to make a fuss by chasing things up. He also takes the view that if anything was wrong you would be contacted.

There is always the possibility that you have been overlooked and his results lost in the ether somewhere.

There is never any harm in doing a follow up call to the consultant's secretary to ask for more information. Providing such information  is what she is paid to do. Do you/did you get a designated nurse when your husband was first diagnosed. Is it possible to ask them to follow it up.

I personally would not be happy to leave it along the lines not wanting to bother anyone. I'd want that reassurance

Edited by member 07 May 2015 at 06:30  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 05 May 2015 at 14:44
Thanks for your concern, I did contact the designated nurse, usually she is excellent, we have had her for ages but I still have no response from her, I'm tempted to get in touch with the patients' group at the hospital. Difficult because it is my husbNd's case not mine confidentiality is a problem
User
Posted 05 May 2015 at 17:35

Judi, probably not what you want to read but I wonder if your husband knows exactly what the situation is and is choosing not to tell you everything? If the nurse is usually excellent but is suddenly not responding, your OH may have specified that he does not want you to be told.

I think before you contact the hospital again, you might perhaps be able to have a frank conversation with him and ask if he knows whether the nurse is avoiding calling you.

Has he discussed with you what treatment they are giving him? Is he still on hormones? Has he mentioned whether they discussed chemo or any of the newer drugs? If not, ask him. He can't be forced to tell you but some of this will have been discussed with him when it was found in his lung, not just at the most recent appointment when the results were 'not available'. Sorry if I am completely wrong but this just does not ring true at the moment.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 06 May 2015 at 22:17
Judi

From experience no news can mean "missed news", a raised PSA result was missed for three years by my GP, in my defence I did not even know what a PSA test was at the time and the test was not related to any urology problems.

I wanted to do it all on my own, so Lyn may have a point.

Thanks Chris

User
Posted 06 May 2015 at 23:37

Lyn may have a point so discuss with your husband first - developments obviously impact on you too and could affect both your future plans. If he genuinely is still waiting results, I would suggest an enquiry be made. I know from my own experience and that of some others that not only are notes lost but information is not always passed on to the patient whether this is good or bad.

Barry
User
Posted 08 May 2015 at 09:46
Lyne you are echoing my own thoughts. He is still on hormone treatment so that is promising. He is very protective of me. I had a stroke last year but I am fully recovered bu he is concerned about me I know. After 44years of marriage I can almost read him like a book . But I am frustrated that the nurse won't respond to my emails. I can't blame her. Thanks for your concerns. I'll try talking to him again but I hate to see him getting upset or even worse, angry hormone treatment is not helping obviously.

Edited by member 08 May 2015 at 09:47  | Reason: Not specified

User
Posted 08 May 2015 at 19:36

Well in that case I think your problem is slightly resolved, for the time being at least. The time to worry will be when you notice that he has stopped taking any hormone tablets or, if he is on injections, noticing that he has gone past the 13 weeks and hasn't had an appointment.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

 
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