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Husband's long wait for op, worried about spread

User
Posted 26 Oct 2015 at 01:19

Hello, I would like some opinions on wait time for Da Vinci robotic surgery. It is seven months since my husband first went for a PSA test, and he is still waiting to have his operation, and I want to know if you think this is reasonable. His father died of PC at the age of 79, five years after diagnosis. We don't know much about it, except it was described as 'indolent' at the time, although he later had RT.

Due to this, my husband asked to have a PSA test in his mid 50s, and had had two before the one in March, both of which were OK. The latest one was 5.5, so he was sent for an examination, which proved negative for anything suspicious, however, due to his dad's PC, the consultant sent him for a cautionary MRI, which didn't happen until four or five weeks later. Something was seen on this, so he went for a biopsy, after another long wait. Five weeks after that, he was finally diagnosed in mid July, and there followed a bone scan a couple of weeks later, which proved negative, thankfully. Another month's wait until he saw a consultant at another hospital in August, when he was told he would have his operation in October. We still haven't got a date. A second phone call to the surgeon's secretary two weeks ago resulted in him being told he is 6th in line, and the surgeon has now scheduled his ops until around mid November, so it won't be before then and could be delayed even further due to any emergencies (general urology, not just prostate) coming in. It does seem an inordinate amount of time to wait for treatment for an aggressive PC.

Due to this, my husband and I are growing increasingly concerned that the cancer may have spread by the time he has his op. His PSA may have been just marginally over, but his Gleason score was 8 (4 + 4). The surgery was put forward as his best bet for a cure and, at the time of the MRI back in early May, the tumour was said to be touching on the outside of the capsule, but still contained within it. The surgeon who will perform the op put him on hormone tablets after he saw him in mid August. 

In July, when he got his diagnosis, he was classed as T3a NOMO (don't forget, this was based on an MRI in early May), but we are obviously worried the tumour has broken out of the capsule now and the pathology report will be even worse after his op - whenever that might be. If we had known in July or August that he might not have his op until late November/early December, we would have considered going private, but we put our faith in the NHS system and are now wondering if we made a mistake.

I know they are under pressure, but the very long wait time makes a mockery of the urgent 2-week referral to the suspected prostate cancer clinic back in early April after his PSA result came back. Since then, everything seems to have slowed right down, if not completely stopped. 

Thank you for your time.

User
Posted 26 Oct 2015 at 13:42

Hello,

I am no expert just a survivor.Prostate cancer is slow growing apparently but I believe the waters are muddied by there being different types of cancer. My journey was three months from confirmed diagnosis to laparoscopic RP. I was originally offered open sugery but held out for keyhole and that did delay the treatment.And the op was postponed once.

Your partner being on hormones should help to shrink the cancer.

My gleason was 4+3 on one side and I was told that the MRI scan revealled the the cancer was just breaking through the capsule on that side. Post operative histology backed that up.

I know how anxious I felt waiting the relatively short time for my op so can only imagine how your partner must be feeling. It does seem a long time to have him hanging on. I must have been lucky on reflection. Maybe the De Vinci is the hold up?

THE CHILD HAS GROWN, THE DREAM HAS GONE
User
Posted 26 Oct 2015 at 15:08

Hey Nellydean,

I waited 25 days from diagnosis to operation.

However, I did let the administrators know that I was self employed and very flexible as to when I had my DaVinci RP.
I was given 3 dates which moved around a bit, but diagnosed on 01 April 2015, operated 25 April (home the next day)!
I think the normal wait time for DaVinci at my hospital was 5-6 weeks.

Edited by member 26 Oct 2015 at 15:09  | Reason: Not specified

User
Posted 26 Oct 2015 at 16:35

Just to say welcome Nellydean.

Have you contacted the consultant's secretary and voiced your concerns, or asked to be put forward for any cancellations that appear?

You do seem to have been waiting a long time, but as Paul says, perhaps it's the Da Vinci bit that's held it up.

The hormones will be doing their job of shrinking the tumour so hopefully it will remain contained but not knowing that isn't helping is it.

Were you not given a designated cancer nurse so that you could ask for reassurance.

Anyway, I'm sure other members will be along to reassure you if they can or give their advice as to what to do next.

If it was me though, I would be ringing the secretary and saying we'd take a cancellation and explain that the waiting is causing too much stress and would it be possible for the consultant to advise us on the possibility of spread given the length of time since first diagnosis. Or even ask if there is a possibility of getting it done earlier at a different hospital

Good luck and best wishes

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 26 Oct 2015 at 16:49

My wife and I keep questioning my waiting time . It was all a bit strange . I had a PSA test that came back as 15 in Sept 14. It wasn't till June 15 ( 9mnths ) that I had the operation . However in this time I seemed to have fantastic service from the NHS with no end of scans , appts , biopsies etc . Unfortunately my cancer was very aggressive as well as evasive to detect , and I am now faced with HT / RT with a post-op PSA now at 2.4 .

User
Posted 26 Oct 2015 at 17:35

Hi,
NHS waiting times are about the space between diagnosis, making a choice of treatment and then the treatment actually starting. In your case, the hospital is well within the targets as your husband started treatment the day he had his first hormone. The cancer will not be spreading while you wait for the op as the hormones will be starving the cancer cells.
In addition, I have interpreted from your post that your husband went for a second opinion at another hospital and then opted to be treated there? If that is the case, your first hospital has been able to close the file so NHS target is irrelevant and I understand that the second option hospital are under no obligation to operate within a certain time which is why more urgent cases are slotted in ahead of you.

Personally, I think it is a great shame that people assume da Vinci is the gold star option and worth waiting for - if he had opted for open surgery he would probably be on the mend by now. it might be worth contacting your nurse specialist to ask how long before the hormones start to make the op more difficult to do.

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

User
Posted 26 Oct 2015 at 22:38

Thanks to everyone for their replies, much appreciated.

 

My husband is 62. A second PSA test he had in the summer showed it had gone up to over 7. Still not a lot, but we were told some PCas don't secrete much of whatever it is they secrete. Each step of the way, the news has been a bit worse than expected. He only got the PSA test in March because he pushed for it, not because our GP surgery was keeping an eye on him (he'd told a previous doctors there about his father, but he dismissed his concerns and said if he wasn't having symptoms not to worry).

As regards the second hospital, this was not for a second opinion, my husband was referred there for the operation, and the consultant at this second hospital recommended the da Vinci, and he himself pioneered the technique in the region, so is much in demand. 

Specialist nurse: He had one at the first hospital but not at the second, so far. He has rung up the surgeon's secretary twice to ask about a date, to no avail, so I don't think there is any chance of a cancellation.

Good to hear, though, that the hormone treatment should be keeping it in check. 

 

User
Posted 27 Oct 2015 at 09:26

Originally Posted by: Online Community Member

 

Personally, I think it is a great shame that people assume da Vinci is the gold star option and worth waiting for 

[Lynn, DaVinci was the only surgery on offer to me! quote]

User
Posted 27 Oct 2015 at 11:28

I am really surprised - perhaps having invested in the machine and the training, the urology dept needs to prove to the grey suits that it was a good investment? Early data from the European research (which is a large scale project) indicates that open, LRP and robotic all have about the same outcome in terms of 10 year survival and likelihood of recurrence, that LRP and robotic have much quicker recovery times but that open is the least likely to cause permanent side effects such as incontinence and ED. A quick scan of members on this forum seems to support that.

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

User
Posted 27 Oct 2015 at 11:34

Yes, it was the only option offered in my husband's case too. I can't say with 100% certainty, but I don't think they do the op there any other way now. We live in the West Midlands, and were told not even Birmingham offers da Vinci, so he is going to have it done at Wolverhampton New Cross Hospital, which is the lead hospital in the region for the procedure. As mentioned before, the surgeon pioneered it there about four years ago, and we are happy my husband is going to be in expert hands, it's just the very long wait that is a bit concerning, and also frustrating for my husband, as he was hoping to have been well on the mend by Christmas.

Still, as long as it goes OK and the outcome is good, that is all that matters.

User
Posted 27 Oct 2015 at 11:34

"As regards the second hospital, this was not for a second opinion, my husband was referred there for the operation, and the consultant at this second hospital recommended the da Vinci, and he himself pioneered the technique in the region, so is much in demand."

I am sorry to say it Nelly and hope I am wrong but perhaps this is the nub of your problem - a medic who is promoting his own self-interest rather than thinking what is in the best interests of the patient? Based on your further information, I would perhaps start to pester and complain although technically the uro doesn't have to operate on your husband within a specific timeframe.

Edited by member 27 Oct 2015 at 11:36  | Reason: Not specified

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

User
Posted 27 Oct 2015 at 11:41

The hospitals must offer the other types of prostatectomy for all the men who can't have or don't want robotic!

You could always ask your GP whether OH would be treated quicker by going back to Birmingham and having open or LRP

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

User
Posted 27 Oct 2015 at 15:47

Could be down to Cannock/Stafford hospital problems still causing longer waiting time issues in Wolverhampton - Walsall - Sutton ( on another medical issue I waited nearly 2 months longer and that was after phoning) even with Saturday appointments coming on - line for some.

Ray

User
Posted 27 Oct 2015 at 16:57

My area didn't have Da Vinci although my surgeon had apparently helped develop it in London ? I was only offered hand Laproscopic and not "open" which Lyn talks about a lot as being superior in many ways . I guess if they can avoid a large abdominal cut and maybe extra days in hospital recovering because of this ( and recovery time at home / risk of hernia etc ) , then they try to avoid it . Shame though if for many men it could give far better results on the ED and incontinence front ! I'm covered in scars anyway from hard work and motorcycles , so one more big one wouldn't have bothered me

Chris

Edited by member 27 Oct 2015 at 17:18  | Reason: Not specified

User
Posted 27 Oct 2015 at 17:48

Not superior, just a different viable option for many. Hernia is a risk for all methods of RP

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

User
Posted 27 Oct 2015 at 22:42
Hi

I've read with some interest about HT treatment before surgery, I was told by consultant today that if I started HT today then I would not be able to get surgery at all. Also da vinca is seemingly not available in Scotland, no good to me anyway. In this day and age you would think that money would be targeted at this type of machine.

User
Posted 27 Oct 2015 at 23:08

This is common in some areas as the hormone treatment can also make the prostate harder to remove in one piece.

I guess that until there is some evidence that Da Vinci is better than the other ops rather than just more convenient, it is considered a luxury to have the machines. There is also all the additional expense of training people to use it

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

User
Posted 28 Oct 2015 at 10:33
Hi Nellydean

Just to clarify, was your husband told by the QE Birmingham that they dont perform Da Vinci as the following link would suggest otherwise, it refers to the surgeon that carried out my operation at the Priory which was not carried out by robot, I know he has perfomed many of these operations, and is one of the top surgeons in the country.

http://www.uhb.nhs.uk/news/first-robot-assisted-op-and-keyhole-patients-meet.htm

As regards the hormones prior to RP, I had 6 months of hormones prior to my operation due to a PSA of 94.4, and sugeons don't always like to operate with hormones in the equation, as it is harder to stage the gland once it is removed due to the hormones affecting the structure of the cells resulting in a possible false Gleason score being reported.

All the best

Roy

Edited by member 28 Oct 2015 at 10:34  | Reason: Not specified

User
Posted 28 Oct 2015 at 11:48
Hi Roy

Just been offered HT followed by RT, was told that surgery wouldn't be possible if given HT first due to my T3b and PSA32.

Again just shows the different opinions of consultants etc, I knew that it could make it more difficult for surgery but told not possible at all.

Been referred to 2 professors in this field for second opinions.

Sandy

User
Posted 28 Oct 2015 at 12:14

Hi Sanders
Some people on here have been offered HT, and RT in the middle of it , and then HDR Bracchy on top as well. Would this be an option for you ?? Just wondered

User
Posted 28 Oct 2015 at 12:54
Hi Chris

This is a question I will ask at next meeting.

Although the consultant stated that surgery was not an option once HT had started he did say that salvage RT would still be available in future if cancer came back.

I think that brachytherapy could be an option.

Cheers

Sandy

User
Posted 16 Nov 2015 at 12:11

Thanks to everyone for replying, sorry for late response. We live in the Black Country, so husband was automatically referred to Wolverhampton from the local hospital where he first attended. There have been no second opinions.

Anyway, pleased to say that his op date is set for the first week in December, so fingers crossed it goes ahead then.

I am a bit perturbed to hear about hormone treatment beforehand potentially affecting the removal of the prostate, and the Gleason score afterwards, but we can't do anything about that now, except hope that it goes well for him.

Thanks again.

User
Posted 16 Nov 2015 at 12:28

Wishing you both all the very best for the operation with a full and fast recovery!

User
Posted 16 Nov 2015 at 12:45

Good luck to your husband for his op in December.

I hope it all goes well for him and doesn't put a damper on your Christmas.

He'll need to put his feet up and relax.

Best wishes

We can't control the winds - but we can adjust our sails
User
Posted 16 Nov 2015 at 13:55
Hi nellydean

Good luck to your husband on his surgery.

I too now have a date in first week of December, but unfortunately da vinca is no good to me, needs to be open surgery.

Anyway best wishes and hope all goes well for you and your husband.

Sandy

User
Posted 16 Nov 2015 at 15:18
Hi William

I spoke to a surgeon at Ross Hall at the start of November and he informed me that these machines were ready to get installed at those locations by December.

But unfortunately due to my PCA having left the capsule this is not an option for me. Open surgery needs to be done so that they can get as much of the PCa as possible as the da vinca would not guarantee that.

Sandy

User
Posted 16 Nov 2015 at 17:21
Hi nelly

Glad to see you have a date arranged for op, hope all goes well for you.

Lesley

User
Posted 21 Jan 2016 at 00:56

Hi, here is an update for all those kind enough to respond to my original post.

My husband attended his 7-week post-op (da Vinci robotic) appointment with the consultant today, and was given the great news that the op had been very successful, cancer was still contained within prostate (which was a worry after such a long time from diagnosis to surgery), lymph nodes clear and vesicles clear, Gleason had been downgraded slightly to 7-7.5 from 8 and he doesn't need any radiotherapy treatment and can stop the hormone tablets. A bonus is that he saved one set of nerves completely and partially the other side. I guessed when he opened the conversation about erections and how he could come back from a demo about a vacuum pump that the news might be good (although you don't dare presume until it's actually said)!

He just has to return in four months for another PSA, and then every four months thereafter. He said he would only start him on RT if it reached 1 (which is apparently lower than the usual 2), but he calculated the odds of him needing to start RT within the next few years were quite low (rising to 30% over ten years).

I know there is no guarantee this will not come back but, after almost a year of worry, this news was a great relief to us both, and my husband near bounced out of the hospital with joy. The change in him is amazing - he feels he has his life back. 

I had read beforehand that people with a Gleason 8 aren't usually offered surgery, but the consultant said my husband was a perfect example of it being the correct course of action, given that he is relatively young (62) fit and otherwise healthy man. He has also not had much problem with incontinence or anything else so, after a series of disappointments, when everything was always a bit worse than expected, it was lovely to have better news than expected for once - in fact, the best. We can't thank his surgeon enough. He did a terrific job, by all accounts.

I hope this gives confidence to other men facing similar treatment, and I wish you all well, and thanks for listening again.

User
Posted 21 Jan 2016 at 05:30

Excellent news for you both.  

Now, have you got the medication and equipment that you may need to facilitate rehabilitation of the penis to try to maximise the chances of EF returning?  Is he exercising the area to promote blood circulation?

The subsequent PSA tests and the wait for results is usually the next cause of anxiety.  We have all been in that situation.  At some point that anxiety becomes easier to deal with, to manage, by accepting the fact that there's nothing that you can do about the result, so there's no point worrying about it.  I call this a state of acceptance, took me a while to reach it, but my life is happier and my anxiety level more constant now that I am there.  Hope you can get there as well.  

Atb

dave  

Edited by member 21 Jan 2016 at 06:26  | Reason: Not specified

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User
Posted 21 Jan 2016 at 07:43

Congratulations to you both. Seems like a fantastic result all round so far. Good news is greatly welcomed on here
Chris

User
Posted 21 Jan 2016 at 09:20

Fantastic news Nelly, and very much welcomed by all.

As you say, it might help somebody else in the same or a similar situation.

Well done that surgeon !!

We can't control the winds - but we can adjust our sails
User
Posted 21 Jan 2016 at 09:22

Nellydean, did they tell you his first post-op PSA reading?

And could you have misheard the bit about starting RT at 1 rather than 2? Usually, RT or other salvage treatment would be started at 0.2 although some will do so when the PSA rises above 0.1 if there have been three successive rises.

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

User
Posted 21 Jan 2016 at 09:58
Brilliant news.

Let's hear more good news stories.

Sandy

User
Posted 21 Jan 2016 at 10:03
A great encouragement to others

Arthur

User
Posted 21 Jan 2016 at 10:50

Excellent news
Hope you had a little celebration ☺

Garry

User
Posted 21 Jan 2016 at 11:04

Excellent news for you both!

I remember how elated I was when I heard and read my histology report from the surgeon. ( I still read it on occasions to remind myself how lucky I was ) 

I was fully expecting to be having adjunctive RT after my op...... to be told I didn't need any further treatment at present really gave me a boost.

Best wishes
Luther

User
Posted 21 Jan 2016 at 11:25

Great News!  Enjoy.

Best Wishes,

Steve

User
Posted 21 Jan 2016 at 12:22

Top news and best wishes to you both!

User
Posted 21 Jan 2016 at 15:22

No, he hasn't even given that aspect much thought yet tbh, Countryboy9, think it will take him a few days to really accept he's been given good news, despite his initial jubilation,  as he was prepared to have to undergo RT sessions - he lost his rag with the dog today on a walk, when she played up, and I told him it was probably pent-up stress coming out. 

Edited by member 21 Jan 2016 at 15:22  | Reason: Not specified

User
Posted 21 Jan 2016 at 15:30

His PSA was 0.008, which the consultant said was excellent.

Tumour measured 20mm on the left side, mostly pattern 4, some pattern 3 and a few little bits of pattern 5, so a fairly aggressive cancer, but one he felt they had dealt with. Think consultant and his colleagues were highly delighted themselves as, pre-op, they felt he would probably need some RT.

He might have said .1 as the marker for starting treatment but, anyhow, he was pretty confident in the prognosis, and said even if he did ever need RT, it would be deemed as curative, so that was encouraging to hear as well.

They took out 15 lymph nodes and they were all clear.

Thanks for your good wishes, and my best to you all too.

 
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