Possible spread to right hip bone

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

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.

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.

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