Partner has gone through Brachtherapy

User

Posted 19 Jan 2019 at 22:29

I've finally joined up after reading the conversations for many months!

In 2017 my partner (58) had a "routine" blood test which gave a PSA of around 5. This was just a routine test and no symptoms had been experienced. The basic checks all appeared fine and so another PSA was done a few months later and this showed a slight increase.
He was referred to the Urology for a biopsy in early 2018 and the results from this were all ok. This lead to the MRI which showed some suspect areas and so when through the template biopsy.

In July 2018, the results were received and the news was the bad news - a score of 3+4. The Urologist offered the RP or HT & 4 of radiotherapy. He was given a period to go away and think about it and read about Brachytherapy. At the next Urologist consultation, he brought this up and got referred to the urology clinic. At Nottingham, they don't offer Brachytherapy, but Lincoln can offer the treatment.

After a discussion with the Urologist, Brachytherapy was the decided treatment. At the end of September the HT started for 4 weeks and then in November the operation took place, and he was released the same day. Another dose of HT was planned for 24 December 2018 (planned by Nottingham) but Lincoln said this wasn't needed (including in writing) This is where the admin problems started! Trying to get a definite answer of whether this 2nd dose is impossible! Nottingham don't respond, apart from when he didn't turn up for the appointment... with Nottingham saying Lincoln shouldn't be saying overriding Nottingham's plans (they must of forgotten he called days before the appointment to check and they didn't get back to him)

He's been back for a CT scan at Lincoln, and continued to chase Nottingham for a follow up appointment and next steps - but this is proving impossbile. It just feels like he's been lost in the system.

Today was the final straw - out of the blue he's received a letter for a MRI scan on Thursday in Lincoln. No explanation was given. The letter was stamped first class and short notice, so of course this unexpected letter is running wild in our minds.

We've maintained a normal life throughout this, and apart from some minor side affects so far, all has been well. But it's amazing what this illness can do. No symptoms were ever experienced, but the mental pain caused by the process is much more painful. As much as we've been strong and positive, tonight due to this MRI letter we are feeling let down by the system and the support channels.

Apologies for the rant and thanks for listening.

User

Posted 20 Jan 2019 at 01:38

What a nightmare for you both. In the interim, who has been arranging his PSA tests - Lincoln or Nottingham?

It seems what is needed is to clarify whether he was removed from the Nottingham urologist’s list when he was transferred to Lincoln, in which case it is the Lincoln uro who decides whether he needs extended HT. If he stayed on the Nottingham uro’s list and was only on the Lincoln list on a temporary basis then the care needs to be transferred back to Nottingham properly. Have you tried phoning the Nottingham uro’s secretary to see whether he is still his patient?

Unless he has had a recent PSA test that was high, I wouldn’t worry about the MRI; it is probably just routine.

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

User

Posted 20 Jan 2019 at 08:57

Herenow

Were you given the contact details of the uro onco nurses and the onco uro nurses, they are in different departments ? I have only had one occasion in probably 30 phone calls where a return call did not happen.

Thanks Chris

User

Posted 20 Jan 2019 at 11:52

I would contact the Patient Liaison Service at Nottingham and tell them of your experience. If necessary they can liaise with their colleagues at Lincoln. You shouldn't be having these problems trying to coordinate tests, appointments etc. We've always found PALS to be very helpful at sorting things out.

Best Wishes

Ann

User

Posted 20 Jan 2019 at 11:57

I would second Peggles advice re: PALS as they have also been helpful to us.

My husband had permanent seed Brachytherapy in 2014 (see his profile) although no HT was required.

Like your partner, he had no symptoms and the cancer was discovered after a routine blood test.

Just out of interest, what kind of Brachytherapy was given. Low Dose seed (permament) or High dose via a rod inserted into the back passage?

I did look at your profile and couldn't see which was given and you don't mention it in your post

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

User

Posted 20 Jan 2019 at 12:01

The GP of the patient is somebody who should be kept informed by treating hospitals of plans and progress. With the lack of response here, I would contact my GP and enlist his/her support in establishing responsibility for who was taking on further treatment and monitoring. Also, I have found that complaining to the hospital PALS office has resulted in a quick response from a hospital.

Barry

User

Posted 24 Jan 2019 at 21:36

Thanks for your replies - To answer the question about the treatment is was Low Dose Permanent Seeds and so far no further blood tests have been done since before the operation.

On Monday he called Lincoln to ask about the MRI scan - only to be told he had missed 2 previous MRI appointments (which he wasn't aware of!), but they explained it was "routine" as part of the treatment which was reassuring. Given the distance needed to travel and the 5.30pm appointment, he was able to reschedule the appointment to next week at Grantham (not sure having a 3rd hospital involved was a good idea!!). Although it didn't answer all questions, he decided he would follow up after the scan. He said he would get a call back from the Lincoln consultant on Tuesday, but this didn't happen.

In the post on Wednesday he received another letter for yet another MRI scan, again in Lincoln but on a different day!! This was the breaking straw (it resulted in a treatment side affect accident!!! After initial tears, we were able to laugh about this!) He called Lincoln again and this time was insistent on getting an answer. He did manage to get a call back from an Onco nurse who just kept saying the Nottingham consultant should be explaining the situation! It was at this point he mentioned going to PALS (thanks to the suggestion!) and this triggered something. The nurse actually did something and within an hour or so he got a call back from his Nottingham consultant. This was a result!

It turned out.... he did not need a MRI scan and the CT scan showed what was needed. He should've gone for the second HT injection, but now that is too late despite Lincoln saying it's not needed. The Nottingham consultant took on full responsibility and even arranged for a consultancy appointment next week.

So hopefully this is back on track and we can focus on the the wellness, rather than the stress from the admin and processes!

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