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Possible spread to right hip bone

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User
Posted 15 Jan 2020 at 18:10

Hi All,  have been following this forum since my husband, Keith, was diagnosed in August 2019 and have looked on the forum almost daily.  I have read profiles and journeys and have felt many emotions, admittedly shedding many tears. But to be honest there have been so many brave and inspirational men and partners expressing their feelings and different ways of coping, that I have found this a great help going forward and supporting Keith.  I have now completed Keith’s profile (Keith is  fully aware of this although he does not come on himself and read anything, I do relay what I feel he can cope with) and would like to share our feelings with this forum and hope Keith’s  experience may help others. if anyone has any advice for us this would be very much appreciated.

I nearly fell off my chair when the Urology Clinical Nurse Specialist was explaining to Keith and I how the cancer had gone outside of the prostate and it wasn’t appropriate for Keith to have it removed.  three monthly Prostap (3.75)  injections  to reduce testosterone.  First Prostap injection in stomach was given on the 18th September 2019.  As you will see from profile, everything moved along very quickly.

17th October 2019 - first meeting with Oncologist Consultant to discuss further treatment.  I looked his name up and delved into his background and was happy Keith had been referred to him, although we didn’t see the Consultant we had been referred to but a colleague of his who confirmed the procedure was going to be radiotherapy to the prostate and seminal vesicles with the intended benefits to offer cure, to reduce risk of recurrence., which would commence in March 2020. We asked about the lesion on the bone and he said they were not going to focus on this at the moment. Keith signed the agreement form and we came away with Keith saying “it is what it is” and we’ll just have to move forward.  I said I was not comfortable with this being left for 3 months (I was left worrying about the progression of the cancer on the hip bone). Neither of us like to make a fuss and I didn’t want to worry Keith about the bone lesion (we were both praying it was an old injury tbh). After a few days I decided I was going to call the department to see if we could discuss this further and before I did Keith received a call asking him to go back to see the Consultant we were originally booked in to see.  This meeting/scenario was completely different, the Consultant apologised for calling him back at short notice, saying they had decided on a different course of action and would be dealing with the lesion on the bone straight away. He was such a personable man, so lovely and very upbeat. He said he thought chemotherapy was the treatment to have as Keith was so fit and well he ‘wanted to throw everything at it’.  Form signed and within three days Keith had his first of six Docetaxel chemo sessions. He had his third one yesterday. 

 

 

 

 

Edited by member 18 Jul 2020 at 16:49  | Reason: Not specified

User
Posted 15 Jan 2020 at 18:10

Hi All,  have been following this forum since my husband, Keith, was diagnosed in August 2019 and have looked on the forum almost daily.  I have read profiles and journeys and have felt many emotions, admittedly shedding many tears. But to be honest there have been so many brave and inspirational men and partners expressing their feelings and different ways of coping, that I have found this a great help going forward and supporting Keith.  I have now completed Keith’s profile (Keith is  fully aware of this although he does not come on himself and read anything, I do relay what I feel he can cope with) and would like to share our feelings with this forum and hope Keith’s  experience may help others. if anyone has any advice for us this would be very much appreciated.

I nearly fell off my chair when the Urology Clinical Nurse Specialist was explaining to Keith and I how the cancer had gone outside of the prostate and it wasn’t appropriate for Keith to have it removed.  three monthly Prostap (3.75)  injections  to reduce testosterone.  First Prostap injection in stomach was given on the 18th September 2019.  As you will see from profile, everything moved along very quickly.

17th October 2019 - first meeting with Oncologist Consultant to discuss further treatment.  I looked his name up and delved into his background and was happy Keith had been referred to him, although we didn’t see the Consultant we had been referred to but a colleague of his who confirmed the procedure was going to be radiotherapy to the prostate and seminal vesicles with the intended benefits to offer cure, to reduce risk of recurrence., which would commence in March 2020. We asked about the lesion on the bone and he said they were not going to focus on this at the moment. Keith signed the agreement form and we came away with Keith saying “it is what it is” and we’ll just have to move forward.  I said I was not comfortable with this being left for 3 months (I was left worrying about the progression of the cancer on the hip bone). Neither of us like to make a fuss and I didn’t want to worry Keith about the bone lesion (we were both praying it was an old injury tbh). After a few days I decided I was going to call the department to see if we could discuss this further and before I did Keith received a call asking him to go back to see the Consultant we were originally booked in to see.  This meeting/scenario was completely different, the Consultant apologised for calling him back at short notice, saying they had decided on a different course of action and would be dealing with the lesion on the bone straight away. He was such a personable man, so lovely and very upbeat. He said he thought chemotherapy was the treatment to have as Keith was so fit and well he ‘wanted to throw everything at it’.  Form signed and within three days Keith had his first of six Docetaxel chemo sessions. He had his third one yesterday. 

 

 

 

 

Edited by member 18 Jul 2020 at 16:49  | Reason: Not specified

User
Posted 15 Jan 2020 at 20:59

The moderators removed empty space from the post we didn't remove any content from the post so the content is what was posted.

 

 

User
Posted 18 Jan 2020 at 11:59

Hi All, really struggling to get to grips with the way this forum works, I’m sure it’s just me and my state of mind at the moment.  

Anyway it is very helpful to read everyone’s posts and to know there is so much positivity and many further treatments out there if Keith’s Pca progresses.

Keith had his third chemo session last Tuesday and has struggled since then.  We think it may be because he had his Prostap injection the week prior to this.  He has been more sleepy, had a lot of pain in bones and quite down/irritable.  Today he is feeling much better, thank goodness.

onwards and upwards as they say.

Best wishes to all on the forum

Ange

 

 

 

User
Posted 11 Feb 2020 at 22:53

Thank you so much for your encouraging post.  Keith appears to be following a similar journey to the one your oh has been on for the last nine years.  He was diagnosed in September 2019 with a PSA of 10.8 and Gleason 3 + 4 with spread to seminal vesicles and possible spread to his right hip bone.  Keith’s Onco decided he should have chemo rather than the radiotherapy because of the spread. 

Like yourselves, we were totally overwhelmed and felt as though our lives were in limbo, but as time has gone on we seem to be able to cope better and just keep carrying on as best we can, enjoying our time with our family and our lovely grandchildren.  We will know more following Keith’s sixth chemo session and scan in March and are keeping positive.  We are looking ahead now and hope to have a holiday in May/June.  We promised ourselves new bikes for Xmas, which we still need to do, and exercise more. That’s the plan anyway.....

It has been encouraging to read that there are so many treatments out there, following chemo, if needed.

We sincerely hope your oh receives good scan results following his chemo sessions.

With very best wishes to you both, Ange & Keith

 

User
Posted 30 Apr 2020 at 15:25

Thank you Phil.  Will let you know the outcome.

Hope all keeps going well for you too.

All the best,

Ange (Angela)

User
Posted 04 Jun 2020 at 11:31

By the way Carl, I meant to say the Spider-Man cycle hat didn’t fit either of us!! Shame, it would have been a good laugh.

Keep waiting to hear good news for you.

Take care,

 

Angexx

User
Posted 04 Jun 2020 at 16:36

Great news

User
Posted 11 Jun 2020 at 16:29

Hi Phil,

Yes, such a huge relief.  I must have another read through your bio about HD Brachytherapy and EB Radiotherapy.  Keith’s Oncologist only mentioned Radiotherapy.  The disease has spread to his seminal vesicles so hopefully radiotherapy will blast these too.

I mentioned to Keith about what he would do if there was the possibility of him having a RP at this stage but he says he would still choose to take the RT route.  I know when they first mentioned the possibility of disease spread my thought was ‘oh no that means they can’t just take it away, get rid of it’ but of course I didn’t know then what PCa was all about.  Not as straight forward as that in many cases.


I hope you receive good PSA results and that your testosterone levels are increasing as they should.  I would think having come off your HT that you will start to feel stronger emotionally too.

I am sorry to hear about your pal’s outcome and can imagine how you feel for him.  All we can do is hope this disease can be kept at bay for as long as possible and try to carry on as best we can living our lives and enjoying as many good times as we can together.

I’m glad you’ve found counselling a great help.  I do think as we get older our memories dwell more on difficult times we experienced in our younger days.  I am absolutely certain that I could have done with some counselling from something that should have been dealt with when I was 6 that was brushed under the carpet as it was obviously thought better at the time not to dwell on it.  Maybe, looking back, I wouldn’t have had the insecurities/depression I experienced from the age of 13.  My life changed from when I met Keith and he’s been my soulmate for the last 33 years, lucky me....

All the best to you, your wife and family.

Angex

 

 

User
Posted 16 Jun 2020 at 14:18

That’s great Phil, cycling 8 miles and breathing in the sea air sounds wonderful....x

User
Posted 10 Jul 2020 at 15:33

Hi Phil, that’s exactly my thinking good to know that they are so precise. Just keeping our fingers crossed that all goes ok without any damage being caused to bowel, etc.

Yes, we were really pleased for Norris and looking forward to his next race.
Hope everything is going ok for you and for your pal who you were concerned about.
Enjoy the sunshine.

Angex

User
Posted 09 Oct 2020 at 23:22

Hi, just an update on Keith’s progress.  He had a phone consultation with his Onco yesterday, a week earlier than expected (don’t know which is worse, waiting for the phone to ring or sitting in the waiting room to be called in, but I think face to face is best option).  Pleased with bloods and PSA 0.101, down from 0.873 in June 2020.  We are so happy and relieved 😀 

Will have another PSA test in 3 months.  We are assuming that unless PSA shows any increase next time, and hopefully it will decrease even further, that the Chemo/RT/HT has stopped any progression and that the pelvis/hip lesion was not spread of cancer.  Who knows, there will always be that doubt now, but we are very grateful to be where we are at this stage.

We have decided to try our best not to worry until the next test and live our lives as best as any of us are able under the present circumstances.  

Thinking of all those who have had their lives turned upside down with the anxiety, pain and suffering this awful disease brings.

Keep safe all.

Ange xx

 

 

User
Posted 10 Oct 2020 at 17:08
Brilliant news!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 12 Feb 2021 at 16:30
Really good news. Delighted for you!

Best wishes,

Chris

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User
Posted 15 Jan 2020 at 20:41
Awww, come on moderators! Either delete the post or leave us enough to be able to work out whether there is anything we can say or do to support Ange? I am guessing that session 3 did not go well and they have decided to stop the chemo and revert to HT as a monotherapy?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 15 Jan 2020 at 20:59

The moderators removed empty space from the post we didn't remove any content from the post so the content is what was posted.

 

 

User
Posted 15 Jan 2020 at 22:26
Probably poor functionality of this site again.

I can't post new posts, probably many others in the same boat.

This new poster has managed to provide a partial post.

Time problem was sorted.

User
Posted 15 Jan 2020 at 23:03

Originally Posted by: Online Community Member

The moderators removed empty space from the post we didn't remove any content from the post so the content is what was posted.

 

Thanks for the clarification Carol

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

User
Posted 15 Jan 2020 at 23:13

Hi Lynne,

i was unable to continue with my post as I could not seem to edit it after going so far down the page and accidentally pressed post. So my fault it posted as it did. To continue........

Keith had a reaction to first chemo, unbearable back pain and bright red face (quite scary). The Oncology nurses were brilliant, stopped the chemo and administered piriton and steroids. Restarted chemo and all ok.  Keith is retired and although feeling tired during this treatment he carries on taking our dog for a walk at 5.30 am each day for half hour/sometimes an hour.  He also has a hobby doing 3D printing.  I have never known him sleep in the daytime but he was starting to need daily naps, which I encouraged.  He became frustrated about this but simply had no choice and unable to do much physical work. I was worried about the effect of HT and ED because of how he would feel about it but his libido just disappeared altogether and he didn’t feel frustrated. This surprised me but I am quite happy at the moment just to have cuddles and the shock of what has happened has brought us even closer together.  I hope for Keith’s sake it returns when he comes off the Prostap injections although I know this is a long way off. He became more tired after first chemo and also had itchy red patches on his arm, neck, and under armpits. He was prescribed steroid tabs and cream which relieved this symptom after four days.  Had same back pain/red face on second chemo and again they stopped it and gave piriton and steroids and then continued with the treatment but said if we had told them beforehand about the first time they would have given these meds immediately prior to the chemo (lesson learnt)  Third session Tuesday just gone and we mentioned straight away about the reaction Keith had with First and Second session so he was given meds first and then the docetaxel but he had same reaction so stopped chemo and gave more piriton and steroids and gave chemo more slowly.  Therefore at next session they will do the same again.  Keith had virtually no sleep last night, which we can only think was due to the extra meds. What is worrying us is that whilst on HT and prior to chemo Keith’s PSA had dropped to 1.35, after second chemo went up to 1.67 and on Tuesday was told it was 2.2 ( not sure if they meant 2.02) when asked the nurse said nothing to worry about. Does anyone know if this is normal with the chemo.

 

 

 

 

 

 

Edited by member 18 Jul 2020 at 16:54  | Reason: Not specified

User
Posted 18 Jan 2020 at 11:59

Hi All, really struggling to get to grips with the way this forum works, I’m sure it’s just me and my state of mind at the moment.  

Anyway it is very helpful to read everyone’s posts and to know there is so much positivity and many further treatments out there if Keith’s Pca progresses.

Keith had his third chemo session last Tuesday and has struggled since then.  We think it may be because he had his Prostap injection the week prior to this.  He has been more sleepy, had a lot of pain in bones and quite down/irritable.  Today he is feeling much better, thank goodness.

onwards and upwards as they say.

Best wishes to all on the forum

Ange

 

 

 

User
Posted 18 Jan 2020 at 12:40
Sometimes PSA goes up a little during chemo; think of it as the cancer cells screaming as they die.

The fatigue is a common side effect of the hormone treatment; you can call the PCUK nurses (number at the top of this web page) for some advice on how to manage fatigue. An allergic reaction to chemo is quite serious and sometimes the oncologist decides to either half the dose or simply stop after 3 or 4 sessions.

When writing a long post, you may find it easier to write it on a word doc and then copy & paste it onto here.

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

User
Posted 18 Jan 2020 at 12:43
PS You mention wondering what will happen to his libido when he stops the hormone treatment; with a met on the pelvis, he may be on HT for the rest of his life.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 18 Jan 2020 at 12:50

I always now compose detailed answers in another program as the Forum editor is clunky and not  really that user friendly 

User
Posted 18 Jan 2020 at 15:48

Thank you Pallance, I thought it was just me.  I’ll be doing just that in future if I make a lengthy comment.

Best wishes

 

Ange 

User
Posted 18 Jan 2020 at 15:58

Originally Posted by: Online Community Member
PS You mention wondering what will happen to his libido when he stops the hormone treatment; with a met on the pelvis, he may be on HT for the rest of his life.

question Lyn

Could they not do targeted RT to the pelvic met?

User
Posted 18 Jan 2020 at 16:04

Lyn, thank you for explaining about the chemo.  It will help to think of those cancer cells dying. With regards to the HT, I think Keith and I are still in denial about the possible bone met.  The reason being that they were unsure if the lesion was cancer and we didn’t really have a definitive answer from the Oncologist I.e. was he ‘throwing everything at it’ meaning the lesion on right hip bone or the prostate.  Originally was going to be RT in March 2019 and then change of plan to chemo immediately.  I am afraid to ask too many questions in front of Keith because he is so positive but I will be asking more when we see his Oncologist on the 30th January as things keep going around in my head.  Is there anything Keith should be doing re. ED at this stage as he has switched off completely in this regard?  This does not cause me a problem but I worry about his wellbeing.

i really appreciate having been able to put everything in writing, found it quite therapeutic you sort of think there I have said it, now move on.

Also appreciative of receiving replies.

Best wishes

Ange

Edited by member 10 Jul 2020 at 10:46  | Reason: Not specified

User
Posted 18 Jan 2020 at 16:07

I meant to say in March 2020. Still haven’t moved on to this year yet!!

Ange

User
Posted 18 Jan 2020 at 16:47

Ange

ED was a big issue for my wife and I. My assigned Cancer care nurse was brilliant and easy to talk to. Through her efforts I got an NHS supplied approved vacuum pump to help deter penile atrophy and to help with our sex life. Coupled with a prescription from my understanding GP for Sildenafil (NHS cheaper version of Viagra, but just as good) I am able to “perform” as close to before HT and RT as possible, albeit with the different “dry” ejaculations.

Alan

User
Posted 18 Jan 2020 at 18:28
As regards making a fairly long reply, I sometimes copy from elsewhere and paste to a thread here as occasionally if I post direct it has all disappeared or automatically posted or posted prematurely but if you post to a thread and then wish to amend it, you should be able to click on the appropriate green box and then be able to retrieve your post, amend it and then save it. Alternatively, you can click on the the appropriate green box to completely delete all of the particular post you wish to remove. (You can only change or delete your own post).

Sorry, I can't comment on Chemo but HT generally results in PSA falling dramatically, certainly by the second application.

Barry
User
Posted 18 Jan 2020 at 21:42

Alan, did you seek this advice on completion of your HT and RT or is it something Keith should look into now.  Only, since commencing HT he has no interest at all which I hadn’t realised would happen.  I suppose it’s the shock and he’s overwhelmed by what is happening to his body.  Presumably when his 6 sessions of chemo is complete, Keith will have more scans and then proceed with RT.  I think Keith has quite a journey ahead of him....

Thanks again for sharing your journey.

Best wishes to you and your wife.

Ange

 

User
Posted 18 Jan 2020 at 21:54

Thank you for your response Barry.  When Keith started on HT (Prostap) his PSA was 10.8 and it was down to 1.35 when he commenced Chemo ( Docetaxel) and prior to third chemo treatment the Oncology Nurse said it was 2.2 (or 2.02) we will check correct figure at next appointment with his Oncology Consultant.  Lyn has explained this sometimes happens when on chemo.

So helpful to be able to discuss issues on this forum,

Best wishes to you. Ange

 

 

User
Posted 18 Jan 2020 at 22:24

Ange

I should just mention I still have a prostate. After my biopsies gave me the bad news I was put on Bicalutamide in the April for two weeks prior to first HT injection, then off I went on my journey. At my progress review in July before Radiotherapy planning I had a frank discussion with my cancer nurse about “shrinkage” or penile atrophy and dry ejaculations after my Prostate was zapped and loss of libido.

So it was 3 months in I decided to do what I could to preserve our sex life. I used the vacuum pump 3 times a week and it was successful. The Sildenafil of course doesn’t just give an erection, sexual stimulation is needed, but I find it works for us. I must say though that we have always enjoyed an active sex life and I was determined to do everything so that my wife didn’t suffer emotionally in spite of what I was going through. I certainly noticed I had stopped initiating sex with my wife and I had to make a conscious effort as I found I had lost interest, but with love and understanding and a few stimulating movies we moved on in the right direction.
One thing my GP found amusing was that you are only allowed one pack of sildenafil which contains four tablets a month. He said to me isn’t it great that the NHS says you’re only allowed sex once a week!

I have mentioned in other posts that I had my last hormone therapy injection in July 2019 which expired in October so I am now three months since the end of hormone therapy but at the moment I have noticed no difference in any aspect of my life but as some people on here say it’s early days yet. I consider myself extremely lucky that I have only been left with acute flatulence, rectal mucus discharge, harsh hot flushes and mildly increased urination frequency. Having read the stories on here I’m sure there are plenty of people who would dream of just having the symptoms I have.
Please don’t hesitate to ask if I can be of any further assistance.

Alan Bennett

Edited by member 18 Jan 2020 at 22:31  | Reason: Grammar!

User
Posted 19 Jan 2020 at 12:09

Thanks for the info Alan.  Good luck with your decision to come off the HT after 18 months and we hope all progresses well for your future and that your PSA remains low and stable for a long long time.

Best wishes,

Ange.

User
Posted 11 Feb 2020 at 11:18

Just an update on my husband’s journey...  Keith has had 4 of six chemo docetaxel sessions.  Side effects have been excruciating back pain, so they now give meds intravenously and chemo infusion slowed down (which means we’re there for about 5 hours), itchy sore skin on hands, on neck, under arms.  Prescribed meds and cream to help.  The first two weeks after chemo has suffered low moods (very tearful), bone and muscle pains and extreme tiredness. Keith is usually quite active, (have never known him fall asleep in the arm chair during the day before);and was fit and healthy prior to prostate diagnosis but this has definitely knocked him sideways.  On the third week following chemo he appears to be okay and carries on with his carpentry and 3D printing hobby.

Cold Cap - Keith wanted to keep his hair if possible and decided to try the cold cap (was a little concerned as he suffers visual migraines). If you decide on cold cap apparently you need to wear this on your first chemo session and if ok you then continue wearing it on each session, you can’t not wear on first session and then decide to try it out as will not be successful.  On the first three sessions the cold cap was put on and allowed to go cold slowly and Keith found this acceptable, although did go through a brain freeze for a short while. On the fourth occasion it was switched on prior to him wearing it so was really cold to start and he found this quite unbearable but stuck it out.  Therefore he will be making sure it’s on his head first before being switched on for his fifth session.  Just wanted to let others know if they are thinking along these lines.  Keith’s hair is thinner but he still has a full head of hair, no patches, he is really pleased (so something on the plus side in the scheme of things). Scan towards the end of March at end of chemo.  Everything crossed that it’s worked.

 

 

User
Posted 11 Feb 2020 at 11:19

Just wanted to say good luck and best wishes to all on your treatment.  I follow every day hoping to hear good news from you all.

Angex

User
Posted 11 Feb 2020 at 17:08

My oh has his 5th chemo next week. Fatigue is an issue  as he can suddenly feel utterly drained but he continues to do most things. He has had pc for nine years, having had ht, radiotherapy  then a short break when things got back to normal but then put on zoladex due to psa rise. He then had arberatitone for nearly two years before psa steadily rose again. He is now on chemo and will be on zoladex  for life.

There are days when it all becomes a bit overwhelming but he soldiers on.

I hope all goes well for you and we will know after next scan if the current treatment is working.

It is hard but we all keep going somehow.

 

 

Edited by member 11 Feb 2020 at 17:09  | Reason: Not specified

User
Posted 11 Feb 2020 at 22:53

Thank you so much for your encouraging post.  Keith appears to be following a similar journey to the one your oh has been on for the last nine years.  He was diagnosed in September 2019 with a PSA of 10.8 and Gleason 3 + 4 with spread to seminal vesicles and possible spread to his right hip bone.  Keith’s Onco decided he should have chemo rather than the radiotherapy because of the spread. 

Like yourselves, we were totally overwhelmed and felt as though our lives were in limbo, but as time has gone on we seem to be able to cope better and just keep carrying on as best we can, enjoying our time with our family and our lovely grandchildren.  We will know more following Keith’s sixth chemo session and scan in March and are keeping positive.  We are looking ahead now and hope to have a holiday in May/June.  We promised ourselves new bikes for Xmas, which we still need to do, and exercise more. That’s the plan anyway.....

It has been encouraging to read that there are so many treatments out there, following chemo, if needed.

We sincerely hope your oh receives good scan results following his chemo sessions.

With very best wishes to you both, Ange & Keith

 

User
Posted 24 Mar 2020 at 22:54

Hi, an update on Keith’s progress.  Following his last chemo a week ago he was awaiting CT scan on the 30th March and a follow up meeting with his Oncologist on 16th April. However,  Keith had a phone call today to say they have had to postpone that date for CT scan and would be rearranging.  We are not sure if this is due to the COVID19.  We did feel that he was lucky to have his last chemo and are so sorry to read on the forum of some chemo cancellations.

Three monthly HT prostap injection due on 1st April so need to enquire how to proceed with that under these very worrying circumstances.  We have both been self isolating at home since last Tuesday’s visit to Oncology.  Our daughter has made sure we have medications and groceries, so very fortunate there.

Keep safe and we are thinking of you all.  Ange x

User
Posted 26 Mar 2020 at 18:42

It is good to hear your reports and even though no one may reply many are still reading them. Please keep writing if you can.

Fingers crossed that Keith’s treatment is all working. 

Stay safe and good luck

Phil

User
Posted 26 Mar 2020 at 19:49
Hi Ange

I've got my next prostap jab on 2nd April, GPs cancelled my appointment and said the District Nurse will do it as a home visit so maybe worth confirming.

User
Posted 26 Mar 2020 at 21:13

Thank you Phil, very much appreciated.  I follow everyone’s progress on this forum and feel for every person going through their own challenges with prostate cancer.  Until Keith’s diagnosis I hadn’t realised what an impact this particular cancer can have on men’s lives and the anxiety/depression it brings with it with changes in hormones and testosterone. I always hope to read good news from all and my heart goes out to those when it’s not so good.  I feel it helps to know that we are all supporting each other.

It was great to hear of your progress on completion of HT and I sincerely hope this continues and your testosterone levels improve, which in turn will help towards your recovery mentally. 

Keith does not know when his scan will be now but we are both still hoping and praying that the hip lesion is not cancer.  We know that Keith will have to be brave like so many if that is the outcome and take solace in the fact that there are many more treatments that can help stop progression for some time.

Thanks again for your support.

Angex

User
Posted 26 Mar 2020 at 21:34

Hi Jasper,

Thank you for this information.  Keith will speak to our surgery nurse tomorrow to check whether this will be the same scenario for him.

i see your treatment commenced as Keith’s, HT followed by chemo.  Great to see your progress following your chemo and EBRT sessions.  So encouraging to read.

All the best going forward.

Ange x

 

User
Posted 27 Mar 2020 at 10:28

Thank you Ange. 😊

Really hoping Keith’s lesion is not cancer. Fingers crossed.

As you are seeing everyone’s journey is slightly different , some much more difficult than others unfortunately. 

I don’t write often on the forum but it helps me that there is a real community here all offering help and advice, and often just someone wishing you well makes you feel a bit better. It feels that there is someone listening that understands.

Best of luck on your journey together.

Phil

User
Posted 27 Mar 2020 at 10:44

Bless you x

User
Posted 29 Apr 2020 at 11:53

Hi, just to update on Keith’s progress.  Oncologist phoned on 16th April and apologised for delay Re. CT scan and will rearrange ASAP.  He was pleased that last PSA reading was below 1.0 and Keith was quite upbeat following their conversation. Another PSA test in July 2020.

We now await new date for CT scan, and are keeping everything crossed for a good outcome.

We have taken delivery of our new bikes today (our Xmas gift to each other) Keith just needs to assemble them, after leaving them in boxes for 72 hours.  We will then start our keep fit regime and see if Keith can loose some excess weight he has put on since commencing his HT.  

Moving forward....


Take care and we are thinking of you all.

Angex

Edited by member 18 Jul 2020 at 17:04  | Reason: Not specified

User
Posted 30 Apr 2020 at 12:02

Hi Ange,

Hope you can get the scan booked sooner rather than later, but everything is messed up at the moment in the hospitals.

Good news with the PSA and the ED 😉.

Enjoy the bikes , fingers crossed we don’t get too much more rain . We keep saying we’ll get out on ours but the wife works as a dispenser in a chemists so doing extra hours at the moment which makes it difficult.

Take care

Phil

User
Posted 30 Apr 2020 at 13:55

Hi Phil,

What a coincidence, receiving your message today, Keith had a call from CT X-ray this morning to say scan will be at a private hospital and gave him three choices, so he’s taken the closest to home and now waits to hear from them with a date.  I must admit it will be scary with the virus but would hope that all precautions will be taken.  I wonder if they’ll be testing all patients prior to going in!  We will ask that question when they call.  Things do seem to be moving along now, just hope results are good.

i am assuming that if the lesion is same size as on the first CT scan then conclusion would be that it’s an old injury and not cancer?  

Thank you for your kind thoughts and hope you and your wife find time to get your bikes out soon.  My bright green cycle hat arrived today!! Don’t know what’s come over me, I usually like to not be noticed.

Very best wishes to you both.

Ange

User
Posted 30 Apr 2020 at 14:35

That’s great news Ange. I’m sure they’ll be testing for the virus and taking all the precautions needed. Fingers crossed for the results regarding the lesion 🤞.

Bright green is a good idea, always need to be seen on a bike 👍. I got a new hat the other day too but mine is a more sedate blue....my wife’s is a nice bright pink....her name is Angela , I presume yours is too ?

Keep us posted. Good luck and have a good ride .

Phil

 

User
Posted 30 Apr 2020 at 15:25

Thank you Phil.  Will let you know the outcome.

Hope all keeps going well for you too.

All the best,

Ange (Angela)

User
Posted 06 May 2020 at 23:08

Hi All,

My husband Keith had his CT Scan today (local private hospital arranged by NHS) so only postponed for five weeks which, under the present situation with Covid, hasn’t been too long.

No idea how long it will take to get results but has an appointment arranged to see his Oncologist on 16th July.  Hopefully we will have a phone call from him way before then.

A very anxious wait now.

Take care all and we are thinking of you.

Ange

User
Posted 07 May 2020 at 14:06

Hope you get the results for Keith’s CT scan soon and hopefully the results you want too.

Take care

Phil

User
Posted 07 May 2020 at 17:00

Hi hope you don’t stress to much waiting for the bone scan results. It was probably the most anxious I’ve been since being diagnosed with PC. It’s not easy to carry on regardless but I’m sure it will pass quite quickly and you get the results that you hope for.

Carl.

User
Posted 08 May 2020 at 12:16

Thank you Phil & Carl.  We’re very anxious and I must admit I’m feeling shaky today and Keith’s stressed but we’ll try to keep focused, as we all do in these circumstances.  Keep walking our beautiful Cocker Spaniel.... Perhaps go for a bike ride early evening.  Still waiting for Keith’s cycle hat to arrive, oh well he can wear my bright green one and I’ll borrow my Grandson’s Spider-Man one!!

Take care all,

Angex 

User
Posted 08 May 2020 at 14:03

I think you should make Kieth wear the Spider-Man one 😂😂👍 take a photo and post on here, god knows we could all do with cheering up.

Stay strong....

Carl.

User
Posted 08 May 2020 at 14:46

😂 Yes we all need a laugh at times like these.

take care.

Ange

User
Posted 04 Jun 2020 at 11:27

Hi All,

Just waiting for Oncologist phone call with results of Keith’s CT Scan he had on the 6th May.  The waiting has been difficult.  I am shaking from head to foot, so can imagine how Keith is feeling.  We’ve be in a sort of limbo but carried on our life as best we can.  We have both been out cycling on our new bikes!!  Keith is definitely feeling the benefit and has lost some weight after only two weeks.  So all good on the keeping fit side,  Just need good results from Oncologist now...

Keep strong everyone.

Angexx

User
Posted 04 Jun 2020 at 11:31

By the way Carl, I meant to say the Spider-Man cycle hat didn’t fit either of us!! Shame, it would have been a good laugh.

Keep waiting to hear good news for you.

Take care,

 

Angexx

User
Posted 04 Jun 2020 at 12:00

Fingers crossed for Keith’s results...🤞.

Phil

User
Posted 04 Jun 2020 at 12:25

Thank you so much Phil.  The phone appointment was for 11.45 and I just had this feeling that the secretary had forgotten to put it in the diary, guess what I was right, I’ve just phoned and she has now managed to fit Keith’s call in sometime after 12.30.  Gosh, we could have waited anxiously all day and not heard.  We’re not very pushy normally but this awful disease is changing things.  I have a long list of questions.

Hope all ok with you and your wife and that you managed to take some time out together during the recent sunny days.

Angexx

User
Posted 04 Jun 2020 at 13:41

Crikey Ange you really didn’t need that did you . Good job you phoned ...hope they get back to you this afternoon.

My wife had last week off so was really nice and we did manage to get out as I was going a little stir crazy with not really getting out. We even managed to pick up a platter of seafood from Leigh-on-sea which we shared with our oldest and his fiancé which was lovely ( in the garden and socially distancing of course ).

I have my next blood test Monday, just for PSA and then another 3 months for the PSA/Testosterone one ...

Hope your news this afternoon is good.

Phil

 

User
Posted 04 Jun 2020 at 15:03

Keith received his phone call from Oncologist.  I’m hesitant to say it’s great news, but he has given us a lot of hope.  He has a MDT meeting next Tuesday (I think his secretary had only just told him about phone call and has not had time to discuss the scans) and will phone Keith again next week after obtaining their views. However, he is of the opinion that the lesion in hip area is not spread of the disease and also said no lymph node involvement.  Comparing Keith’s CT scan from before his chemo and the one taken recently, he does not personally think there is any change in lesion in hip area following chemo and would have seen a change if it was cancer spread from prostate. Pleased with blood results and PSA 0.85. Yay, we are in a spin, but must wait until next week before we celebrate..

Its Keith’s 67th Birthday tomorrow and we are having afternoon tea in our youngest daughter’s garden, with our eldest daughter and our two lovely Granddaughters.  I think we’ll have beaming smiles on our faces from now until next week.

Keep strong all.

Angexx

User
Posted 04 Jun 2020 at 15:09

Phil, so pleased to hear you and your wife had some time to spend together and with your family.  Sounds like you have felt the benefit too.  

Good luck next Monday for your PSA result.

Angex

User
Posted 04 Jun 2020 at 16:04

That sounds like good news Ange, and no lymph node involvement is nice to hear.

Enjoy your tea party and fingers crossed for next week .

Phil

 
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