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The other C word - extra care needed in the current COVID situation?

User
Posted 27 Mar 2020 at 19:08
I went in for my 7th cycle of cabazitaxel yesterday. It’s hard to give up on a treatment that’s working. The main precaution our hospital is taking is to have as few patients in as possible. They also asked me to wait in the car and texted me when they were ready so no wait in waiting room. My wife was not allowed in. The nurses were not masked, nor had they been tested, but they are not being allowed to work if they or any of their household are showing even the least possible symptoms. We are observing the strictest isolation at home. Not so bad actually!
User
Posted 28 Mar 2020 at 14:14
I am terrified they are delaying treatment now.

My husband is locally advanced, bulging into seminal valves. 1% on one side and 5% on other. The nurse said it was small but quite active. T3b MO NO. G8. He had a bonescan a week ago but we've heard nothing. Couldn't get through on phone at all, presumably because of the virus. They were not expecting to find anything on the bone scan. The MDT meet on Fridays. I presume he missed last weeks as he had the bone scan the day before. I am thinking he would have come under yesterday's?

I keep hearing how cancer treatments are being postponed and it terrifies me. The nurse said they were looking at ' curative' treatment but we are both scared they won't do it because of the virus.

User
Posted 28 Mar 2020 at 14:16
I am terrified they are delaying treatment now.

My husband is locally advanced, bulging into seminal valves. 1% on one side and 5% on other. The nurse said it was small but quite active. T3b MO NO. G8. He had a bonescan a week ago but we've heard nothing. Couldn't get through on phone at all, presumably because of the virus. They were not expecting to find anything on the bone scan. The MDT meet on Fridays. I presume he missed last weeks as he had the bone scan the day before. I am thinking he would have come under yesterday's?

I keep hearing how cancer treatments are being postponed and it terrifies me. The nurse said they were looking at ' curative' treatment but we are both scared they won't do it because of the virus.

User
Posted 28 Mar 2020 at 16:50
I think we would have been more relaxed about a wait if we'd had a lower Gleason. When she said grade 4, G8 we nearly fell off the chairs. She did say it was small but quite active. We are just scared because she said although, it hadn't broken free as such, it had bulged into one of the seminals. Waiting on treatment to us, means an aggressive cancer breaking out and running away with itself.

are we being dramatic or can we 'relax' with the extra wait, given his Gleason.

User
Posted 28 Mar 2020 at 17:29
That's is with this virus isn't it? No one knows...

Our business is aligned closely with the holiday trade. Our income has gone literally to nothing within a couple of days :( It will take a long time before people start going on holiday again and the summer is when we make the money to tide us over the quieter winter months. We are watching what the government give the self employed. We are worrying about our longer term ability to pay the mortgage. It is a mess to be sure. So we are either worrying about the state of our finances or his PCa. Oddly he's sleeping like a log but I'm averaging 4 hours. I nod off ok but I'm awake worrying about either or both in the early hours.

Although I reckon we will all go mad from this lockdown.😄 Jigsaws at the ready.!

User
Posted 28 Mar 2020 at 19:38
Littlewren - bearing in mind things might be slightly different - I was diagnosed t3b in Sept 15 with Gleason 8 but with slight spread to the seminal vesicles so on paper not too different. My treatment path was hormone therapy (Zoladex) for 3 yrs (now would probably be 2?) and radiotherapy. Although I started on the HT right away I didn't have the RT until Nov/Dec 2016 with the delay due to TURP in May 16 and marriage Oct 16. The oncologist and others said the delay no problem as HT doing its job etc and things went to plan. Saying that though I admit I was pretty bothered about the delay at first but was assured that it was no problem and PSA checks were done regularly. When you start on this type of thing you don't have a clue what to expected so worry is unavoidable isn't it.

Peter

User
Posted 28 Mar 2020 at 21:46

We are both in the 'get the bugger out' brigade but we will do what's best. We just want something to start soon....and if I hear of one more report of cancer treatment being delayed...well it gets me very scared and flustrated.

User
Posted 28 Mar 2020 at 22:33
In the end, it is all about statistics. Statistically, a man diagnosed in 2009 and having no treatment (just active surveillance) did just as well as the man who had surgery, the one who chose brachytherapy and the one who had radiotherapy and all 4 of them had a very high chance of still being around in 2019.

If those 4 men were being diagnosed right now, the stats would be rather different. The one who went into hospital for surgery would be far less likely to still be here in 10 years than any of the others, who would be either self isolating at home or possibly venturing out for a hormone injection and then staying safely at home.

I can imagine it is scary to be diagnosed and then seem not to be doing anything about it. If following the MDT they still think surgery is feasible, they may suggest hormones for the time being to control the cancer until COVID has abated. On the other hand, if the MDT decided that surgery was not a suitable option because of his staging, he could be starting on the hormones within a couple of weeks.

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

User
Posted 28 Mar 2020 at 23:41

Recommend checking out The Rutherford Cancer Centres as although private their CMO stated today they would open up to NHS patients to ease delays in treatment etc. They have latest kit etc and very good consultants so might be worth investigating. I agree that waiting not ideal. If I had pushed my RARP back six months chances are the tumour would have breached the capsule and I’d have a very different outcome.

TG

User
Posted 29 Mar 2020 at 17:40
So are we awaiting a letter or a phone call to discuss the results of the mdt meeting? How long from the date of the meeting does contact normally take?

Sorry for the questions....I'm being bombarded by a very concerned other half and I don't really know anyone else to ask.

User
Posted 29 Mar 2020 at 18:32

Highly variable. With mine the MDT meeting was London based and they meet monthly. So I had to wait pretty much a month due to timings of initial diagnosis etc. The guidance from the MDT was the same as my local consultant with active surveillance thought to be safe the other recommended option due to young age was surgery if I wanted to go down that route. As it turned out surgery was prudent as active surveillance would probably not have resulted in a good outcome for me.

Be mindful that in most cases post surgery histology in ~44% of cases sees the Gleason score upgraded. In my case it was thought to be 60-70% likely of an upgrade from Gleason 6. And indeed that was the case 3+4.

TG

User
Posted 02 Apr 2020 at 15:19

Originally Posted by: Online Community Member
If those 4 men were being diagnosed right now, the stats would be rather different. The one who went into hospital for surgery would be far less likely to still be here in 10 years than any of the others, who would be either self isolating at home or possibly venturing out for a hormone injection and then staying safely at home.

Erm - do you mean as a result of more likely to be exposed to CVD or because surgery is rubbish?

User
Posted 02 Apr 2020 at 17:52
I read it as meaning risking exposure to Covid by having surgery.

Still nothing from the MDT. We have rang the uro dept and get a message saying we'll get back to you so don't leave multiple messages.... Yes well people wouldn't leave multiple messages if indeed you got back to them.

Not even had the results from the bone scan which was 2 weeks back.

We just want to talk to someone about treatment timetables. Appreciate it's probably mayhem with doctors from all departments pitching in. It says on their website that cancer treatments are still going ahead but I have my doubts. He's said that he just wants to start HT to hold the thing up somewhat and then decide what treatment is best after this dies down. But there's literally no one to talk to.

User
Posted 02 Apr 2020 at 19:13
"I read it as meaning risking exposure to Covid by having surgery."

Surely the major part of the risk is going into a hospital for any reason at present and all surgery has been postponed. And doesn't RT damage your immune system?

I've still not had the results of my post-op prostate biopsy, but then I was told to expect 6-8 weeks and I'm not quite at 4.

And I've still not had the results of my skin cancer scan from November.

User
Posted 02 Apr 2020 at 22:09
18 months I was a T3B (was T2 pre surgery) - had RP and no complications other than some ED. PSA undetectable at 18 months. I am 63.

My wife and I are religiously following govt advice and doing the whole isolation thing.

I didn’t go through all this to let some grubby little covid bug get me!!! My neighbours have been fantastic. Only complaint, TV is crap and we are desperately waiting for spring to come. My hospital has been great (Marsden/Epsom) and suggested I delay my next blood test which was due in a couple of weeks until the peak is over.

There is absolutely no need to risk getting this bug - a good 20 sec soapy wash as regularly as possible especially if you’ve been in public places.

User
Posted 03 Apr 2020 at 02:51

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member
If those 4 men were being diagnosed right now, the stats would be rather different. The one who went into hospital for surgery would be far less likely to still be here in 10 years than any of the others, who would be either self isolating at home or possibly venturing out for a hormone injection and then staying safely at home.

Erm - do you mean as a result of more likely to be exposed to CVD or because surgery is rubbish?

 

Sorry, I meant as a result of being in hospital and therefore at increased risk of being exposed to the virus but also because there is clearly going to be a shortage of ventilators and ICU / HDU beds so if it goes wrong, there is no guarantee that the hospital staff would be able to keep the patient alive. There is also going to be a significant impact on community health care provision for the foreseeable future.  

We know that in many areas, operating theatres and recovery rooms have been converted to ICU / HDU rooms so it is a brave person that decides to go for non-emergency surgery right now, I think. 

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

User
Posted 04 Apr 2020 at 13:16
Finally had a letter this morning. It said they were changing his face to face appointment on the 15th April to a phone one on the same day.

Great, except he didn't have an appointment on 15 th in the first place...or any other day for that matter. Some sort of cock up but we are happy that we have some sort of contact and an appointment on 15th.

So we will see....surgery when this is over or HT/RT. Either way, he's going to push for HT to start asap to halt things.

User
Posted 04 Apr 2020 at 16:36

I feel very sorry for many, many cancer patients at the moment and those with other life-limiting illnesses or long term health conditions. Whilst I fully understand the need to make all the resources available for those suffering from Covid19 and those treating them.  I fear there will be another humanitarian crisis occurring with the cancellations of hospital consultations, scans etc.

I had a scan on January 12th  on my lower back I understood I was having my pelvis done as well at the same time as per the musculoskeletal specialist's request.  I was due to go back to see the specialist on 31st March but the appointment was cancelled and I had a telephone appointment instead and was told that for some reason the pelvis wasn't done and I would have to wait now until the present crisis was over. I'm not too worried even though I have had colon cancer myself and have ongoing screening for an atypical enchondroma in my femur, but for many patients, it must be so stressful.  

 

Some days you just have to create your own sunshine...... 

User
Posted 04 Apr 2020 at 18:53

My next appt with the oncologist is scheduled for 6 May, when we're supposed to be discussing the timetable for my EBRT.  Given the current situation I'm expecting both the appt and the EBRT itself to be postponed, maybe for months.  Haven't heard yet but then we've had no post here for quite a while as the local sorting office has a lot of staff off sick.  Obviously my HT is continuing so I'm not badly off compared to others.  Would have been nice to get the EBRT under way but these are crazy times for everyone.  Stay safe all.

 
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