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User

Posted 30 May 2022 at 14:51

Hi, my husband Mike ( 79 years) , was ? diagnosed with advanced prostate cacner with mets last Monday. Since then he is down for CT, Bone scans and MRI, followed by a biopsy. His chest Xray was normal. HIs PSA was 57.8 and Total Alkaline Phosphatase 213 u/l. He started hormone tabs last Friday. Apart from the intermittent pain below his right rib cage sometimes getting in the back below shoulder, he is eating well. Until 3 weeks ago Mike was playing tennis three times a week and badminton once a week. However since the diagnosis he was advsed to take it easy and not to participate in sports. Mike is still quite active doing gardening and going for walks.

The news of advanced prostate cancer has devestated us both and whilst Mike appears to be taking it in his stride I am nearly falling apart. Any support or advice on copind mechanisms would be greatly appreciated or even someone sharing their experience similar to my husband's.

Maud.

User

Posted 20 Jul 2022 at 21:53

Also look to see where your nearest Maggie's centre is, Maud

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

User

Posted 30 May 2022 at 18:14

Hi Maud, I found it helpful talking to the McKellen and prostate UK nurses. They are good at listening but also if asked at giving advice.

User

Posted 08 Jun 2022 at 15:25

Thank you for sharing your experience. I agree wit you re keeping up with your running. Hope all goes well with your results. This grey area is the worse bit waiting to hear the results.

User

Posted 22 Jun 2022 at 18:22

Hi I am not sure what happened to my earlier conversation as for some reason I cannot find having posted it a few hours ago.

I wrote to say that Mike ( hubby) had his Decapeptyl Intra Muscular injection this afternoon. He will have it again in 6 months time and I am not sure why such a long break before the next one? Mike continues to play tennis and badminton, is pain free and eating well and on the whole feels ok. Long may it last. Has anyone had experience of this particular type of hormone please?. Would be good to know how they got on?. We will see the Consultant in 2 weeks time to hear the biopsy results which of course I am dreading!

Hope everyone is enjoying the lovely sunny days we are having so far.

Maud.

User

Posted 05 Jul 2022 at 10:47

Thank you Lyn and have a good understanding of what to expect this evening. I have also spoken to a nurse who was very reassuring, especially with regard to my hubby's feelings of anxiety about this evening's meeting.

User

Posted 05 Jul 2022 at 21:07

Thanks for your encouragement Elaine. I will try and watch the programme you mentioned. Hope your husband is doing ok. X

User

Posted 06 Jul 2022 at 08:08

Hi Michael thank you for your positive thoughts. I note you have a very similar journey to Mike. I hope you are keeping well and staying positive.

We will wait for the next stage of our journey and see what the Oncologist has to say. Our Consultant said Mike will need Chemotherapy in tablet form. I hope we don’t have to wait too long to start treatment 🤞.
Warmest wishes to you.
Maud.

User

Posted 06 Jul 2022 at 08:51

Originally Posted by: Online Community Member

He has already started treatment Maud, the hormone therapy. The tablet form of chemotherapy that he referred to will probably be abiraterone or apalutimide, which he will take in addition.

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

User

Posted 12 Jul 2022 at 21:30

Hi. Sorry to hear this and I hope he and you are ok. I feel, as above, that going with the oncologist view, given Mike’s fitness, would seem the best course of action at this point. Good luck with it all.

User

Posted 12 Jul 2022 at 23:05

Thanks Mike for your good wishes. Just wondering how you are getting on with your treatment. Hope all is going well.

User

Posted 12 Jul 2022 at 23:15

Sorry to read this news again Maud.

Glad Mike has made his decision for chemo, I’m sure he will do really well. Reading the possible side effects is always a worry, but it’s really unlikely he will get them all and a lot seem to get very few. I think if we read all the possible side effects of paracetamol etc before taking we would probably think twice.

The main thing is that Mike continues to feel well, it’s great that he is continuing his sports….I’m sure it will make a huge difference physically and mentally.

Hope you’re ok too. Take care x

User

Posted 20 Jul 2022 at 10:17

HI All just to update on the latest development re Mike. Saw the Oncologis last week and we were told that Mike has T3bN1M1c. So a very aggressive cancer and confirmed as stage 4 metatastic . So he starts his chemotherapy treatment a week on Friday and we had his assessment meeting yesterday with the Oncology nurse. She was very thorough and whilst there was so much information to take in at least we were given the written stuff as well. I dont know how I feel anymore as the final diagnosis whilst it was verbalised to us to then see it in writing was another shock.

Apparently the bone scan has showon multiple bone metastases invnolving the thoracolumbar spine, bilateral ribs, bilateral hemipelvis, right humerus and right femoral shaft. he CT scan has shown metastases in the right pubic ramus, left acetabulum, left posterior ilac wing, bilateral ribs and spine. Also small lung nodules. Nothing in the liver! I was in total shock when I read the report from the Oncologist. Despite all of this Mike continues to play tennis as if there is nothing wrong with him. Even the Oncology Nurse who was at the meeting with the Oncologist told me on the phone that the findings somewhat do not match the evidence when she saw Mike and how fit he is. The Oncologist was just as taken aback. I am not sure what to make of it all, however I am staying strong for Mike as its the least I can do for him.

Hope you are all okay and looking after yourselves in this hot weather.

User

Posted 20 Jul 2022 at 20:19

HI Michael, thanks for your support. I also hope that whatever your news was at your oncology appointment you will commence treatment asap. I hope they have offered you a choice of treatments as my Mike was. Having done a lot of research on life expectancy it is not all doom and gloom. Of course the chemotherapy treatment hopefully will have a positive impact on you as I am hoping it will on my husband. I will phone Macmillan tomorrow and ask if I can have some counselling as I feel I need to share my thoughts etc with someone with experience in these areas.

Take care of yourself and keep in touch.

Maud.

User

Posted 02 Nov 2022 at 12:13

Fingers crossed it's nothing to worry about

User

Posted 11 Nov 2022 at 21:17

It is called peripheral neuropathy and is a common side effect of chemotherapy. Unfortunately, it tends to get worse as you go along. Talk to the chemo team - if it becomes a big problem, they may decide to reduce the dose. Also, keep an eye on his feet and make sure he wears well fitting shoes. Some people say that wearing chilled gloves during the infusions helps but I am not sure whether there is any science to prove it.

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

User

Posted 10 Jul 2023 at 18:08

Hi All

It's been a while since my last post, mainly this was due to having some of my own personal issues. Howeer things are sorting themelves out for me Mike ( husband) is doing well so far, his past PSA and Alkaline Phosphatase was well within the normal range. Of course when the time comes for him to have his 3 monthly PSA test I know I will be quite anxious. Mike continues to play tennis and badminton which is due to his mental strength and resilience. He refuses to let his condition take control of his sporting activities.

We had a lovely week in Orkney and I know Mike wanted to go there for a long time, I am so pleased we managed to do this. Sending positive vibes to all on the forum.

Warmest wishes

Maud.xx

User

Posted 15 Jul 2023 at 18:35

Hi Maud,

I've used Staysure Insurance, but I haven't had a diagnosis of advanced prostate cancer, nor have I had chemo, so my experience may not be relevant. I know that others have used Staysure, as well as one called Puffin. You could try those.

Best wishes,

JedSee.

User

Posted 15 Jul 2023 at 20:03

Try going with an insurance provider that can allow you to exclude previous conditions (on the basis that nothing is going to happen to Mike while you are in Cyprus for a week which would cause you to make a claim). For many years, while my wife was being monitored after treatment for bladder cancer, myself now with prostate cancer and my wife having recently been diagnosed with early-state Alzheimer's we've had annual travel insurance through M&S with all medical conditions excluded. The cost is around £150 and we are both in our mid to late Seventies but very active! Whatever might happen, the insurance will still cover non-related accidents and baggage loss etc.

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User

Posted 30 May 2022 at 15:14

hi Maud none off us like having prostate cancer but we are lucky we have the treatments available today that can cure or prolong our lives was diagnosed at 59 with prostate cancer gleeson 9 but now have a psa off 0.01 from 24.9 and doing reasonably well I know a couple off chaps that were diagnosed with bone Mets over 10 years ago and are still here and doing well I am sure your other half will do so too good luck gaz 👍

User

Posted 30 May 2022 at 18:14

Hi Maud, I found it helpful talking to the McKellen and prostate UK nurses. They are good at listening but also if asked at giving advice.

User

Posted 30 May 2022 at 18:57

Thank you for this. I will at some stage talk to the nurses.

User

Posted 30 May 2022 at 19:09

Ok, I want to wait until we get all the results from hubby's tests, hopefully in a couple of weeks time and then contact the Nurses for support and advice.

User

Posted 02 Jun 2022 at 20:23

Hi Maud, I think it is the HT which has relieved the pain. The HT puts the cancer to sleep pretty fast. I am fairly certain I have seen similar posts on this site where systematic treatment or targeting a met relieves pain very quick.

As he hasn't had a biopsy I assume he hasn't been fully diagnosed, but as he is on HT that does imply some medic thinks he has cancer. What is his PSA?

So good news that he has responded to HT, slightly bad news that this probably confirms the cancer has spread, but your probably going to be hearing that soon from a doctor.

With HT followed by some of the newer HT drugs he may have a very long future ahead of him.

Edited by member 02 Jun 2022 at 21:19 | Reason: Not specified

Dave

User

Posted 02 Jun 2022 at 20:55

Hi Dave,thanks for your response. I did wonder if the HT was suppressing the pain. I hope that when we get his rest results, there will a treatment plan which will work well for him. He has been very healthy uptil now. Playing tennis 3 times a week and badminton once a week. The other days he goes for his long walks. We are eating healthily, alhtough Mike does miss having a glass of wine at the weekends as he was told not to drink alcohol due to taking co codamol tabs for pain releif.

Gillian

User

Posted 02 Jun 2022 at 21:19

I've just read your first post.

Exercise can help a lot with HT. We have a member here with advanced PCa who has been running ultra marathons for years after a T4 diagnosis https://community.prostatecanceruk.org/default.aspx?g=profile&u=17723

I think once you have a treatment plan you should revisit the question of tennis and badminton. There may be reasons he should stop, but it could be someone being over cautious in the absence of all the facts.

Dave

User

Posted 02 Jun 2022 at 22:09

Thank you Dave. I did wonder if the Consultant Urologist was being over cautious. We will wait for the results and take it from there.

Maud

User

Posted 07 Jun 2022 at 18:35

So my hubby had his bone scan yesterday, we are not just waiting for a date for his biopsy. He is taking his hormone tablets daily which I beleive must be working to some extent as he is feeling much better in himself. Eating really well, very active and is very keen to get back to playing tennis again!!. I have advised Mike to wait until we hear the results of all the tests done. I dont wish to dampen his enthusiasm, just being maybe too cautious.

Gillian

User

Posted 07 Jun 2022 at 20:57

I was interested to read about your husband and advice to take it easy. I am in a similar situation with newly diagnosed Advance PCa and still don’t have all results back. I have mets in bones with lymph nodes also impacted. I am a runner and asked my urologist about keeping running. His view was that so long as I was careful and tried not to take fall if possible then keeping active could only be helpful at the moment. I have just started Hormone Therapy and have had some serious bouts of tiredness but i am finding keeping moving and active very helpful in managing this. Of course treatment to slow the the spread may cause me to have to stop but at the moment keeping running feels good for me mentally and physically. I hope you and your husband are ok, best wishes.

User

Posted 08 Jun 2022 at 15:22

Hi so hubby has his test results tomorrow evening and I am dreading it although Mike is quite ok about it all. Crossing fingers for a favourable outcome.

User

Posted 08 Jun 2022 at 15:25

Thank you for sharing your experience. I agree wit you re keeping up with your running. Hope all goes well with your results. This grey area is the worse bit waiting to hear the results.

User

Posted 08 Jun 2022 at 18:55

Sending positive vibes to your husband and yourself. It’s the unknown that is worse than the known, I totally agree. Thank you I hope to know more this week too.

User

Posted 09 Jun 2022 at 10:08

So this evening we will be told the results of my husband's tests. He is feeling really well and I much to my amazement he has gone of to play badminton!!. He has not taken any pain medication for the last 3 days now, eating well and back to his normal self of doing household stuff which he hadnt done since he was firsts diagnosed with advnaced prostate cancer wiht bone mets a few weeks ago. I am staying positive that the results will be favoiurable and we will have a good plan of action for Mike as he manages his journey.

Thank you to those who have suppored me during my journey and I will update on the latest developments.

User

Posted 09 Jun 2022 at 16:41

Good luck for this evenings meeting. What ever the news I truly believe that exercise and staying positive helps with energy levels while on HT.

User

Posted 09 Jun 2022 at 22:50

HI All, so its not good news at all. Mike's cancer has spread to his lungs, lymph and spine. I am devastated with the news and in shock. Mike for some reason is more accepting and matter of fact. He does find it difficult to beleive especially as he feels so well, taking part in sport etc. It hasnt affected his daily life at the moment. The consultnant has said that once he has his biopsy then the Oncologist will decide what treatment plan will be offered. However he also said that with drugs it would be managed and controlled. I am hoping he is right abou this.

User

Posted 10 Jun 2022 at 18:28

Hi there, my husband is not looking forward to having a biopsy ( next Thursday) on his birthday!. Has anyone had this and what was it like. It would really help just to know how people coped.

Maud

User

Posted 10 Jun 2022 at 20:30

Maybe they are wanting samples to help establish the type of PCa and how best to treat for good response. I would expect it to be from a number of various options to treat systemically in view of spread. If this reasoning is the case, your husband will probably be given a TRUS biopsy rather than the more involved transperineal one. With the former they just numb the area somewhat and take a few cores in hollow needles inserted through the rectum. The man just feels a slight sting like being flicked by a an elastic band accompanied by a click as each core is taken. Most men don't find this too bad. I drove home a few moments after pulling my trousers on. The patient may experience a small amount of blood in urine and semen for a few days afterwards. When they are looking more specifically to establish precise whereabouts of cancer in Prostate so as to consider the cancer treatment more precisely, there is more reason to use the more elaborate transperineal biopsy which often involves a local GA although it is sometimes done using deep sedation or other methods. Blood in urine and semen very likely in this case also. I was driven 200+ miles home shortly after this type of biopsy. There was a little pain afterwards but I didn't need the supplied pain killers although taking the antibiotics is essential. Nobody wants an UTI which can be difficult to eradicate.

Barry

User

Posted 10 Jun 2022 at 23:01

Really sorry to hear this news Maud. It is really difficult to take in I’m sure. My husband had the trus biopsy (I think) he didn’t have GA anyway. He said it was slightly uncomfortable but that was all. He had a little blood in semen afterwards but that was all.

So so much that can be done to help control this disease, so still lots to be optimistic about. Fingers crossed you get all the results quickly and get a plan put in place.

All the very best to you both x

User

Posted 10 Jun 2022 at 23:33

I had a TRUS biopsy. They gave me an injection which knocked me out so I don't remember any of the procedure itself.

Afterwards I had to stay in the ward until I was no longer peeing clots and blood. However, that night at home the clots came back and I ended up back in A+E but they checked me and said I only needed to worry if there was a blockage. Peeing the clots for a day or two is unpleasant but normal after this procedure. Can't quite remember but I think it took a few days for the urine to go clear again.

As for semen, ejaculating was painless but the semen it pure bright red like something from a horror movie. They never mentioned that to me so it was quite the surprise. I think it took a few weeks for the semen to clear up again.

Best of luck with the biopsy and everything that follows.

User

Posted 17 Jun 2022 at 21:17

Hi All, so Mike had his biopsy yesterday afternoon. He told me that they had taken 26 samples, isnt this a lot?? Anyway he felt ok and today continued to feel ok with no side effects. He came shopping with me and intends to play tennis on Monday. He is not in any pain at all so I am amazed at this husband on mine who is coping so well. Apart from a slight issue last night with PU he is okay so far.

We now wait for this results and hope all will be okay. I will need to find out if 26 samples from a biopsy is right. Has anyone else had this many please?

User

Posted 17 Jun 2022 at 21:29

Depends on the type of biopsy but anything from 12 to 40 cores is normal.

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

User

Posted 18 Jun 2022 at 12:08

Thank you for this, it has reassured me. Today in the Sunday Times there is a really interesting article entitled, " Prostate Cancer Patients to Avoid Chemo". I will try and find the link to it.

Mike has now been diagnosed with Malignant Tumor of Prostate and on the (th June after his MRI its Metastatic Cancer. Its all so frightening however hubby is taking it quite well, in fact a lot better then me!

User

Posted 18 Jun 2022 at 12:29

Hi Maud. It sounds like they have taken a good selection of samples which seems to be the norm for PCa. I know I had samples taken from 8 different areas but probably multiple samples in those areas if that makes sense. I am glad to hear he is coping well and I hope you are too. Fingers crossed for some good news from biopsies. Best wishes.

User

Posted 18 Jun 2022 at 14:07

I have just read the article entitled " thousands could be spared pain of prostate chemo."How I wish this had been known sooner. Chemo destroyed the last few weeks of my husband's life and the cancer escalated far more quickly than expected.

I feel angry and sad that he suffered so much pain and complications as a result of agreeing to something he believed would give him more time. It doesn't help when you are grieving to find out there may have been a kinder option. I hope all goes well for you and keep asking questions along the way.

User

Posted 22 Jun 2022 at 18:22

Hi I am not sure what happened to my earlier conversation as for some reason I cannot find having posted it a few hours ago.

Hope everyone is enjoying the lovely sunny days we are having so far.

Maud.

User

Posted 22 Jun 2022 at 18:46

Hi Maud been on 3 monthly decapeptyl injections for 13 months bit off weight gain so excercise is important generally tolerable had odd bone pain in the early days just two more to go I was Gleason 9 5/4 psa 24.9 now 0.01 so far so good good luck with his treatment 👍

User

Posted 22 Jun 2022 at 18:51

Thank you for sharing your experience. I really appreciate it.

User

Posted 22 Jun 2022 at 19:30

No problem found decapeptyl tolerable on the whole 👍

User

Posted 22 Jun 2022 at 20:14

So reassuring to hear your comments and thank you for sharing it. Hope you are doing ok as well.

User

Posted 22 Jun 2022 at 20:37

Thanks Maud doing really well feared the worst in the beginning had 37 sessions off radiotherapy as well as the decapeptyl worked all way through the treatment and still at work at the moment things are ok there is light at the end of the tunnel good luck to you both keep positive 👍

User

Posted 28 Jun 2022 at 14:32

Hi all, my hubby had his first Decapeptyl hormone injection last week and apart from feeling sleepy in the afternoons, he has been ok. However over the last 3 days he developed a hoarse voice and sore throat. This does not appear to be one of the side effects mentioned with this drug. My overactive mind is worried this could be something else. Has anyone experiened this at all please. Any feedback would be greatly appreciated.

Maud

User

Posted 28 Jun 2022 at 15:07

Hi Maud had similar symptoms after my first injection but it wore off in a couple off weeks and no problems ongoing 👍

User

Posted 28 Jun 2022 at 15:18

HI Gaz, thank you for your quick and reassuring response. I know Mike will be pleased to hear this.

Maud

User

Posted 28 Jun 2022 at 15:19

No problem odd off day but been on decapeptyl 14 months found it tolerable 👍

Edited by member 28 Jun 2022 at 15:20 | Reason: Not specified

User

Posted 04 Jul 2022 at 12:01

Hi All, so Mike will get his biopsy results tomorrow and whilst he is okay about it all, I am once again thinking the worst. What I cannot understand is that whlst we know Mike has stage 4 metastatiaac cancer, what other news will he reveive from the biopsy results. Can it be any worse that what we already know?. He is doing really well on his hormone injection treatment. Is now back to playing tennis and badminton 3 times a week. Looks well and is almost back to his normal self, also not in any pain what so ever. I hope all of this is a good indicator that the treatment is working, for how long though remains to be seen.

Hope you are all doing ok and taking good care of yourselves.

Maud

User

Posted 04 Jul 2022 at 14:17

From the medics' point of view, it is really helpful to have confirmation of which type of prostate cancer it is (there are 27 different types) as some types are more aggressive than others and respond differently to certain treatments. It is also the only way to find out the Gleason grade.

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

User

Posted 04 Jul 2022 at 14:57

Thanks for this Lyn, surely as Mike is doing so well on his hormone treatment despite the results he would be left to carry on with what he is on now?.

User

Posted 04 Jul 2022 at 15:13

Yes but they will still want confirmation of what they are dealing with. In very rare cases, where the PSA is in the many thousands and scans have shown extensive mets, the oncologist may decide to not do the biopsy due to increased risk, but for most men, the biopsy information is important.

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

User

Posted 05 Jul 2022 at 10:47

User

Posted 05 Jul 2022 at 18:39

HI all, just back from our meeting with the Consultant to het hubby's biopsy results. The bad news is that his Gleason score is 10 which is the highest you can get. Also confirmed the cancer has spread to most of the bones, pelvis, spine and lymph nodes. Mike is going to be referred to an Oncologist and we will wait and see what the next course of treatment is. So all in all we are trying to take in the latest bit of news. I need to look up a lot more on Gleason scores and the prognosis. IN the meantime I will try and make sure that Mike remains positive.

I am feeling a bit down as I was really hoping for a better outcome.

User

Posted 05 Jul 2022 at 19:53

Hi Maud 2 years ago my Gleason score was 9 oncologist said could have been 10 luckily bone scan clear now psa 0.01 and still working don't give up there is always hope see what the treatment plan is going forward hope this helps gaz 👍

User

Posted 05 Jul 2022 at 20:24

Hi Gaz, thank you for your encouragement. It does mean a lot. Unfortunately, Mike's bone scan showed cancer spread to the pelvic and spine, so not good . However, will wait for the next course of treatment.

User

Posted 05 Jul 2022 at 20:59

Sorry to see this Maud.

It’s so true that some can respond incredibly well to treatment so keep positive and keep strong.

When my husband was diagnosed and we were told it had spread to the bone (this later changed) we watched the programme that Bill Turnbull did called ‘staying alive’ it’s on All 4. Not sure if you’ve ever seen it but he was diagnosed I think 2017 and had extensive mets. I found the program really emotional but it definitely helped me to see that there are things out there that can help.

Wishing you both all the very best x

User

Posted 05 Jul 2022 at 21:07

Thanks for your encouragement Elaine. I will try and watch the programme you mentioned. Hope your husband is doing ok. X

User

Posted 05 Jul 2022 at 21:52

Hi Maud, I got a G9. I have no mets so hopefully with RT/HT I may now live forever.

To be honest getting to 79 and still playing tennis and badminton is a good news story. With HT followed by some of the more advanced drugs, he may be able to live long enough to die from something other than prostate cancer.

Dave

User

Posted 05 Jul 2022 at 22:19

Hi Dave , I am hoping that Mike who was 80 last week will keep going for a long time. The consultant did say that his physiology was that of a young man. RIght up to now at this age, he has never been to the hospital for anything. So apart from commencing statins at the end of last year and having eye checkups, his health has been extremely good.

I cannot believe that as cancer has spread to his bones (spine, pelvis ) he is able to carry on playing tennis and badminton. Even the consultant appeared surprised. So please to hear you are doing well.

Maud

User

Posted 06 Jul 2022 at 03:24

Hi Maud I hope you and Mike are ok. I know how you will be feeling emotionally. It is horrible during the diagnostic process when each test or meeting seems to bring bad news, I have been on a similar path almost on the same timeline as you. Just to say I am sending positive thoughts your way. I think and feel physical exercise and fitness is a great way to help so I hope he can stay well and keep at that. Best wishes.

User

Posted 06 Jul 2022 at 08:08

Hi Michael thank you for your positive thoughts. I note you have a very similar journey to Mike. I hope you are keeping well and staying positive.

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