Recent diagnosis: My husband was... - Advanced Prostate...

Advanced Prostate Cancer

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Recent diagnosis

debbiejayn profile image

My husband was diagnosed,a few days ago with Advanced Prostate Cancer. He is 63 and had a RP two years ago with a PSA of 12 and Gleeson score of 7..He now has a PSA of 0.5 and 2 Mets..One on his pelvic bone and a micro one on his lower rib. He has a PSMA scan at a clinic in UK,.We are both devastated...He is a natural pessimist anyway and I am trying my best to find out as much as I can. The Consultant( the Prostate surgeon who did the OP )was quite positive and said could probably keep it under control with Hormone therspy and Radiotherapy..We are seeing the Oncologist in the next few weeks to draw up a plan..Does anyone have any thoughts or encouragement?..I'm struggling..Thankyou.D.x

36 Replies

while nothing cancer related is a walk in the park, don't think of this as a death sentence. My condition is similar to his and I have been doing quite well. Six years in June on hormone therapy. There were a few hiccups along the way but this is the right place for positive support. Good luck to you

debbiejayn profile image
debbiejayn in reply to mrscruffy

Thankyou so much for your input...I think its difficult when you have never had any symptoms but find you have s serious illness..I shall definately use this site for information..Thanks again.D.

mrscruffy profile image
mrscruffy in reply to debbiejayn

I was being tested frequently because my dad died from this. What a difference 5 years have made. Things are available that just weren't when he got it. Mine is hereditary and saw how well my dad did so we "circled the wagons" and got premium care. We also have female friends that are super supportive, guy friends are scared of it, no fear in this house

debbiejayn profile image
debbiejayn in reply to mrscruffy

Thankyou so much for your positivity..My husband had none of the risk factors or symptoms..( his father died at 93 basically of old age..)It was a completely unrelated visit to the GP where he was offered an examination (just to check) as he was 61. Thank goodness the GP did this.. It makes me angry that our girls will get regularly screened for various cancers but our son wont..All it would take is a regular PSA test .Obviously now he knows he can be proactive in making sure that he is checked regularly.Anyway thankyou again for your input and stay well.D.

Initial shock of hearing this diagnosis is profound experience. I remember the tears in my wife's eyes and even my primary doctor's eyes (doctor is a family friend)..I thought this is the end. Here I am after 3 years alive and doing well ..living almost normal life. Remember, men with PCa live anywhere from 3 yrs to 30 years. Wish you best of luck.

debbiejayn profile image
debbiejayn in reply to LearnAll

Thankyou so much..My husband is a born pessimist anyway so I'm trying to find out some more positive information..I hope you continue to be well..Many thanks D.

He seems to have the type of PCa that can be managed for a very long time with just hormone therapy. The indeterminate one on his rib may be a false positive from the PSMA scan. He can get the pelvic one zapped with targeted radiation. I'm not sure if it accomplishes anything to do so, but why not try?

Thankyou for your input...I have heard that ribs can show false positives but not sure why..We will see what the Oncologist says re radiotherapy ..As you say probably worth a try..Thankyou again.D.

I'm not sure why either. But I've heard that from several nuclear medicine specialists. They look for a CT correlate.

Fingers crossed that my husbands is a false positive!

Schwah profile image
Schwah in reply to Tall_Allen

What’s a “CT correlate “?

Tall_Allen profile image
Tall_Allen in reply to Schwah

Evidence on a CT scan that there is indeed a lesion at the site of the uptake.

My husband was diagnosed in 2018 with oligometastatic (less than 5 mets) one in his spine and one lymph node , he was on casodex and zoladex for 18 months he had RRP and has radiotherapy to his spine and prostate bed/lymph nodes . He has been off all meds since feb 2020 and his psa sat at 0.03 , it has recently risen slightly so we need to wait 3 months to see if there is another rise before deciding g if he will need to go back on the meds, he is great and feels well although less energy than before the treatment but works a stressful job and enjoys life , he is 61 . It’s not a death sentence just a bump in the road that you will deal with , best of luck

Thankyou..Its good to hear from another wife .I think that my husbands personality type makes it difficult too..He always describes himself as a "glass half empty "kind of man!..and I'm always the one to be positive...He does have only one,possibly two mets..both in bones.. so hopefully hormones will help initially. He is due to start on those this week..It sounds as if your husband is doing well..and hopefully mine will too..Thanks again.D.

I am 12 years on now from my RP at 58, I have had various treatments since to manage the cancer Radiotherapy, Bicalutamide for 8 years, then hormone injections and Abiraterone for the past 4 years.

I have 3 metastasis, in my hip, groin and spine and 2 years ago I had SABR treatment to one of the metastasis as part of a clinical trial.

Recently my PSA started to rise again and I had some further Radiotherapy to the 2 metastasis in my spine and groin and a change of steroid from prednisolone to Dexamethasone. Yesterday I had my lowest PSA for over 6 years 0.44!!

I celebrated my 70th birthday last month with my wife, 4 children and 8 grandchildren, (who I thought I would never see 12 years ago).

My message is one of hope, faith and perseverance. Be vigilant and positive, yes this may be a killer but many men die of other complaints and carry on as normal. Its all about looking for solutions, this site is a major help with that, and having a positive mindset.

Thankyou so much for your positivity..Its great to hear of men still living good lives with this disease.Im hoping that when we meet with the Oncologist and have a plan in place,things will become a bit clearer..I hope that you continue to do well, and thank you again for your support.D.

👍😃

I am in Liverpool so if ever you want a listening ear on UK treatments and options get in touch through this site

That's brilliant..Thankyou.We are in the Midlands..I will definately take you up on that.

Proflac profile image
Proflac in reply to debbiejayn

Hi. I am a wife in Nottingham UK. Husband on ADT plus abiraterone. 6 years post diagnosis. Happy to chat anytime. X

CAMPSOUPS profile image
CAMPSOUPS in reply to Proflac

Small world. Big world. One of my trips from home in Chicago to Nottingham I took this picture.Hope all is well there. It has been about 6 years since my last trip there.

SERVICE TRIP AT NOTTINGHAM
debbiejayn profile image
debbiejayn in reply to Proflac

Thankyou so much.I will definately take you up on that..We are in the Midlands...Many thanks for your support.D.

Thankyou..Its great to hear positive stories.My husband and I have faced many challenges together and this is the latest. I am trying to be positive..I think once he gets to meet the Oncologist and has a plan he will be better..Fingers crossed..I hope that you continue to do well.Thanks again.D.

Good day:

Glad to see you’ve found this site.

My Joe was diagnosed in 2009. We’ve been through many treatments since then. He’s starting a second course of chemo next month. The last round was in 2017, so we’ll be very happy if we get another 5ish years of the quality life we’re living. It’s a new normal, for sure, but beats the heck out of the alternative.

He sometimes goes to the dark side, but I remind him that none of us is getting out alive. I then remind him how grateful we can be that they diagnosed it when they did; that it’s not worse; that there are so many treatments now - and more innovation is on the way…..And I remind him that HIS attitude is one of the determining factors of the success of his treatment.

Sending prayers for your peace on your journey. Know that we’re all here for you!

debbiejayn profile image
debbiejayn in reply to Cateydid

Thankyou..You are very kind..I'm very grateful for everyones support..D

Yep it is a horrible feeling when first diagnosed but please don’t despair. I’m 75 and was diagnosed eight years ago and during that time I have lead a very active life(tennis,cycling,walking)and the NHS has done a wonderful job looking after me and it is only the last couple of month as I move into heavier drugs and radiotherapy (no chemo yet) that it is affecting my lifestyle. I would check out food and drink restrictions. Good luck

debbiejayn profile image
debbiejayn in reply to Rogersw

I will do that..We have always eaten a very healthy diet..(no meat for about 49 years@) and no processed food...not sure if that helps but will read up on it..

Rogersw profile image
Rogersw in reply to debbiejayn

I’m a veggie too I found a book ‘prostrate cancer by Jane Plant’ very useful

debbiejayn profile image
debbiejayn in reply to Rogersw

I will have a look at that..Thankyou.D.

Confirmed pessimist here! Thanks for asking <g>

On the one hand, I often feel like death would be a welcome respite from this awful world of war, stupidity, and more stupidity. I'm not afraid of death necessarily but every living thing is afraid of dying, the process.... (and I know a guy dying right now from prostate cancer)

On the other hand ... from the beginning I sought to combat the fear with information; it's a sure-fire cure. Find the best doctors you can, get their advice, check that advice here if it seems fishy, and don't accept a doctor who wants to dictate a care plan to you.

It's not a matter of being optimistic or pessimistic IMHO, it's a matter of taking the situation for what it is and dealing with it the best you can.

Some really exciting developments in treatments, many of them chronicled here, are in the offing. I hope that I can hold out long enough to take advantage of them.

Of course, nobody wanted the cancer, nobody deserved it. But you can deal with it one step at a time. Don't try to get too far ahead because there are almost infinite possibilities of treatments.

debbiejayn profile image
debbiejayn in reply to SteveTheJ

Hi...You sound just like my husband!!..I must admit I'm the one that does all the research and gives him the information . He is a very intelligent and private man..( and a terrible Patient like a lot of men!).. I know that it will take him a while to get his head around this but hopefully it will be ok..Many thanks and good luck.D.

Cancer is just a word, not a sentence.

I survived my first Cancer 40 yrs. Now in my 7th year with pca, Gleason 9, aggressive at diagnosis, I am now 74, active and have no issues. On Nubeqa & Lupron. Both psa and T undetectable.

That's brilliant ..Its good to hear positive stories.. Hopefully things will go well for my husband.. He is 63 so hopefully many more years yet..Many thanks.D.

Debbie buy 85 + 1 candles for his 85 Birthday (the 1 is for luck). He will be around so long that you'll be sleeping in different beds. Pessimists? That's me for sure, my blood type is "B Negative".....

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 05/12/2022 7:37 PM DST

debbiejayn profile image
debbiejayn in reply to j-o-h-n

Bless you!..I really hope so...Just all a bit daunting at the moment.. Just been to our GP to get the prescription for hormone tablets but somewhere between Consultant and doctor the letter has gone astray so down again on monday to sort it out...All seems to be an uphill battle.. Thankyou so much for your positivity. I shall buy those candles! .D.

Debbie......... Unfortunately we all have been in the exact same predicament that you both are experiencing....It's overwhelming to say the least. Just remember Prostate cancer (Pca) is a slow growing disease so you have some time to get ready to "fight the beast"...Tell your dear Husband that it's okay to be a pessimist but I want to warn you both that every little hangnail or bump he feels he will think it's the Pca getting him....Just live your lives...... because he will be 85 years old in a flash (and of course you will still be 21). Post here, this is a great site for information and camaraderie.....Cin-cin...........and God Bless...

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 05/13/2022 1:13 PM DST

debbiejayn profile image
debbiejayn in reply to j-o-h-n

Thankyou so much...We have been overcoming hurdles together since we were 17 and will continue to do so..Many thanks.D.

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