New and nervous

User

Posted 28 Nov 2018 at 12:36

Hi Everyone,

My husband who is 67 had a uti in September and when it cleared his gp ordered a PSA test which came back at 30. She ordered another one a week later which came back PSA 24, then a third a week later was PSA 30 once again. The gp referred my husband to a urologist who phoned and told him that it is likely to be cancer and that he needed to come in the following week for an MRI and bone scan followed a week later by a biopsy. The urologist told my husband he would know one way or the other within a month.My husband had the mpMRI and bone scan last Friday and they sent him away saying he would be coming back in a week for the biopsy. We hadn't heard anything about a biopsy appt., so my husband rang the hospital to find out when his appt. was and they have no available places before the 18th of December. They told him it takes at least ten days to get the scans (?) I've seen advice on here about being proactive, so I phoned and asked to speak with his consultant's secretary and they weren't keen to let me and told me there would be nothing she could do for us. The person finally offered to speak with the consultant and get him to phone or email my husband and I said yes please. So much for within a month.

I've been lurking on here for a few days and The Toolkit just arrived in the post. Thank you to all the fantastic men and women in this community whose posts have kept me (fairly) sane and helped to educate me.

Janet

User

Posted 28 Nov 2018 at 19:40

What a wild ride you've had so far. One small gland causing so much strife. Rude.

I hope this Christmas is as memorable for you for all the best reasons.

Janet

User

Posted 03 Dec 2018 at 17:45

I think you mean Mr Angry, not John.

I am not the only one here who has a sense of humour!

Sadly there are many who do not, which is a shame as medical science has proved that those with a positive attitude fare better than miserable old gits (the phrase used in the learned medical papers I have read).

Cheers, John.

User

Posted 03 Dec 2018 at 19:28

I do indeed mean Mr Angry. Sigh.

Sorry Mr Angry I often make these sort of mistakes. I blame my age. 😀

Janet

User

Posted 04 Dec 2018 at 11:23

Hoping for the best on Thursday. Whatever happens treatments now are better than ever. I agree on the proactive philosophy and also found the forum informative and very supportive. Obviously the subject matter is serious but they say laughter is the best medicine.

User

Posted 04 Dec 2018 at 23:29

Hmmm....well if it changes his sex life, it changes mine too ...

Seems like a legitimate interest to me ( laughing!)

Clare

User

Posted 07 Dec 2018 at 09:04

Originally Posted by: Online Community Member

Janet, I hope all goes well, wishing you all the best for Christmas. I'm with you on the positive mindset and humour. There are several posts that have made me laugh out loud, I was brought up on irreverence 😄
Although I may show my worries here, I am very good at switching on the positive, in control face when I need it. :)

Thank you 😊

I and my husband were both widowed at a young age and left with kids to raise, humour saved us both. Some people think it's denial, but it's definitely not in our case. I mean, what's the alternative? No thanks.

Wishing you a wonderful Christmas too.

Janet

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User

Posted 28 Nov 2018 at 15:27

The cancer pathway targets are 14 days from GP urgent referral to first appointment at a hospital and then, once diagnosed, 31 days from agreeing which treatment to have to start of that treatment. You are caught between the two. There is no point having the biopsy until the MRI has been evaluated and the results communicated to the urologist; mpMRI can take longer to evaluate than normal MRI so 3 weeks in your area isn't too bad.

There are data protection issues to consider as well; medical staff are usually not permitted to communicate with family members without written consent from the patient - your husband might have more luck if he rings them himself but until the urologist has those mpMRI results, s/he can't arrange the next step.

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

User

Posted 28 Nov 2018 at 16:12

Thank you for your reply.

Sorry in advance if two replies show up. I pressed post, left the site, came back and it wasn't there, so I'm posting again. 🙂

We honestly don't mind waiting as long as it does no harm, and it seems from your post that it won't. Good.

Yes, I knew when I phoned that data protection was an issue but my husband was a bit shaken and stuck in meetings, so I did what I could.

The issue for us was being told one thing, both on their site and from the consultant, and having the reality be completely different. Now we know.

We'll just distract ourselves in the meantime and make the most of the holiday season.

User

Posted 28 Nov 2018 at 17:05

Keep distracted Janet!

In the meantime, bear in mind that if there is prostate cancer it is usually very slow-growing in most cases, so a few weeks here or there of anxious waiting will not make much difference. How inconsiderate of this problem to show up over Christmas! Others here have said that nevertheless they had a full service and diagnosisis over the festive period.

When you know more about his situation, it’s very helpful for the people here if you fill in full details of his condition under your profile. Click on mine and others’ to see what I’m on about.

Hope it all turns out for the best.

Cheers, John.

User

Posted 28 Nov 2018 at 17:50

Hi John,

I'm doing all I can to distract myself. My house looks like Santa's grotto... I may have gone overboard.

I know, the cheek of my husband's prostate acting up at the holidays!

I will absolutely fill in all the details of my husband's condition under my profile when I have something more concrete to share. Who knows, he may appear here himself.

Thank you for your reply and all my best to you.

Janet

User

Posted 28 Nov 2018 at 19:40

What a wild ride you've had so far. One small gland causing so much strife. Rude.

I hope this Christmas is as memorable for you for all the best reasons.

Janet

User

Posted 03 Dec 2018 at 11:49

We just received a call asking if my husband could come in for his biopsy this Thursday; they had a cancellation. My husband has taken it. The nice lady on the phone said we shouldn't have been told initially that it would have bern a week after the mri and she was happy she could get us in sooner than the 18th. Guess my call may have done something after all. In any case, I think we're getting excellent care so far.

Janet

User

Posted 03 Dec 2018 at 14:10

Hi Janet,

For all the great treatment on the NHS I have ‘enjoyed’ this year, it has not been without pro-activity on my part. Luckily I am a control freak, so it comes naturally.

You did exactly the right thing, phoning the consultant’s secretary so that your old man could fill an appointment which could potentially have gone to waste. Keep up the good work!

My mate Walter is going blind through cataracts, aged 75, and has got an ‘urgent’ first appointment with a consultant sometime in April 2019. Luckily for Walter, I know Mandy the appointments booking secretary in the ophthalmic department as a result of taking two other old blokes for regular eye injections (macular degeneration) - they both say it doesn’t hurt - I would rather stick pins in my eyes!

I doubt Walter will be waiting until April and Mandy will be getting a nice box of chocs for Christmas.

Cheers, John.

Edited by member 03 Dec 2018 at 14:25 | Reason: Not specified

User

Posted 03 Dec 2018 at 14:45

Hi John,

Yes, being proactive comes naturally to me as well. I don't enjoy doing it a lot of the time, but I'm compelled to do it anyway.

Our daughter has a multitude of health issues and I have, over time, found out who to phone and, more importantly, the "real" phone numbers of the departments that care for her. One of them is neurology and I'm convinced the number they give to everyone initially is attached to a phone that lives in a disused cupboard as no one ever answers.

As promised, as we learn what his diagnosis is I'll post it in my profile. I've told him about how lovely and helpful people have been and he says if it is PCA he'll join.

Kind regards

Janet

User

Posted 03 Dec 2018 at 17:17

Ahahahaha Mr Angry. He'll love that. Of course, you don't want another member, but if he does acquire the secret handshake he'll love the humour.

Janet 😂😂

Edited by member 03 Dec 2018 at 20:00 | Reason: Changed "John" to "Mr Angry"

User

Posted 03 Dec 2018 at 17:45

I think you mean Mr Angry, not John.

I am not the only one here who has a sense of humour!

Cheers, John.

User

Posted 03 Dec 2018 at 19:28

I do indeed mean Mr Angry. Sigh.

Sorry Mr Angry I often make these sort of mistakes. I blame my age. 😀

Janet

User

Posted 04 Dec 2018 at 11:23

User

Posted 04 Dec 2018 at 13:10

I often wonder if support forums for female forms of cancer are full of postings from husbands worrying about their wives, or is it just men who are reluctant to talk about their health?

Chris

User

Posted 04 Dec 2018 at 13:29

Originally Posted by: Online Community Member

I often wonder if support forums for female forms of cancer are full of postings from husbands worrying about their wives, or is it just men who are reluctant to talk about their health?

Chris

Yes, I was new to all this since I have been here boring you all for the past year, but I find it very strange as well.

I did take charge of Her Loveliness’s menopausal problems, consultations, and eventual hysterectomy.

Where at one point, her brilliant surgeon admonished me saying: “I’m talking to my patient, not you”.

I sent him a bottle of Chateau Latour to assuage his feelings after her highly successful operation.

Cheers, J

Edited by member 04 Dec 2018 at 14:17 | Reason: Not specified

User

Posted 04 Dec 2018 at 15:16

History on this forum underlines what is common knowledge that women in general are naturally more proactive regarding health and heath problems both for themselves and for other members of their families than men are. In the 10+ years I have been a member of this forum I have noticed the tendency has increased. There are probably a number of reasons for this but generally it is women who have the more direct responsibility of looking out for their children and this extends to husbands/partners. Also, perhaps in some cases, they may be concerned about financial implications for their families or mother about effect of incapacity or loss in some where the man is the main bread earner . Certainly, women are far less reluctant to check out medical concerns than men.

Barry

User

Posted 04 Dec 2018 at 23:29

Hmmm....well if it changes his sex life, it changes mine too ...

Seems like a legitimate interest to me ( laughing!)

Clare

User

Posted 06 Dec 2018 at 10:27

It's probably a generational thing too. Since most of the men on here are of a certain generation, I assume many of their partners are as well. If prostate cancer isn't eradicated in a couple of decades (or sooner), we may see a change in how men advocate for themselves in general and on these boards.

Janet

User

Posted 06 Dec 2018 at 18:22

Biopsy done. Husband said it was " a piece of cake". A specialist nurse performed the procedure and she told him his MRI was 5, that's all he remembers anyway as he was quite stressed before the procedure. We should hear from them within three weeks and if we don't we're to phone them.

Janet

User

Posted 06 Dec 2018 at 18:46

I'm 10 years younger than my husband. I definitely fit the stereotype as does my husband.

Janet

User

Posted 06 Dec 2018 at 22:39

You're almost right Mr A, 16 years between me and oh.

"You're only as old as the women you feel!" Is the catchphrase that's followed us through the last 20 years...

Oh has absolutely no grasp of modern technology or any interest in mastering it😄 which is why I'm on here and he's not. If it's not face to face he's not interested and even then he can be an unsociable fella and not want to join in.

"Opposites attract" is another phrase that springs to mind for me and the oh.

In terms of advocacy, oh is acutely dyslexic and we put together anything he wants to say before hand, write it down and practice. He actively asks me to speak for him in appointments as he gets in a verbal muddle under pressure. He'll have a go if he can, otherwise he just tells the Dr we've written it down and I'm reading it.

Although I may show my worries here, I am very good at switching on the positive, in control face when I need it. :)

User

Posted 07 Dec 2018 at 09:04

Originally Posted by: Online Community Member

Thank you 😊

Wishing you a wonderful Christmas too.

Janet

User

Posted 20 Dec 2018 at 11:48

The results are in and my husband does not have cancer. We are beyond thrilled. There is something there but it's benign. He has a follow up appt in January and I'm sure there will be talk of what's next for his symptoms.

I can't thank everyone on this board who gave support enough. You are all amazing.

I'll post on the appropriate board when I find out next steps and Prostate UK is our new chosen charity to give support to each month.

All my best to everyone

Janet

User

Posted 20 Dec 2018 at 13:07

Fantastic news. Have a very merry Christmas. Xx

User

Posted 20 Dec 2018 at 13:21

Thank you Kentish. You too.

User

Posted 20 Dec 2018 at 14:06

Excellent news!

The very best Christmas present!

Best Wishes

Luther

User

Posted 20 Dec 2018 at 15:08

Great news.

Ido4

User

Posted 20 Dec 2018 at 15:23

Thank you Luther.

User

Posted 20 Dec 2018 at 15:24

Thank you Ido4

User

Posted 20 Dec 2018 at 16:49

Excellent news, and just in time for Christmas too!

Have a great Christmas and a very happy new year,

Chris

User

Posted 20 Dec 2018 at 23:28

Thank you Chris. A very Merry Christmas and Happy New Year to you too

Janet

User

Posted 21 Dec 2018 at 06:09

Hi Janet,

What a nice Christmas pressie for you two!

We see people come on here as newbies and ‘we’ think ‘Uh oh, another one with it’, but we never say, and I personally try to be positive with them and say ‘it could possibly be a urinary infection or benign hyperplasia’ when I know it most likely is not. So great news he is in the clear, it doesn’t usually pan out like that.

Of course there is still the little matter of what caused the problem in the first place, and subsequent treatment for that to ‘look forward’ to ☹️.

Anyway, good news and enjoy your Christmas!

Cheers John.

User

Posted 22 Dec 2018 at 10:04

Thank you John.

We realise how lucky we are. We didn't expect this outcome at all and it came as a shock, a good shock. We were so prepared for other news it's taken a couple of days to get our heads round the good news.

Yes, there will have to be something done about whatever the problem is that's causing his symptoms. When he was having his biopsy a darker area within his prostate was quite visible on the screen and it was an area the biopsy was focused on. We'll know more in January.

Have a lovely Christmas.

Janet

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