Hi, I’m new to the site so just finding my way around it. I’m sure I’ll find a lot of information from people going through the same as us

[Ktm990jan]

Hi all, I don’t have any questions as yet as I’m just finding my way around the site but my husband was diagnosed in May after his Prostate cancer was missed for nearly 2 years. He is currently on his 4th round of chemo.

Kind regards to all

[tango65]

How many metastases does he have and where were they located.?

[Ktm990jan in reply to tango65]

hi, it’s in multiple lymph nodes and pelvic floor

[tango65 in reply to Ktm990jan]

Was the cancer classfied as M1 or all the nodes are inside the pelvis and the cancer was classified N1 M0. ?

If the cancer is N1 M0 is not considered metastatic and it could be cured with radiotherapy to the prostate , lymph nodes and affected areas if it is possible. The radiotherapy is usually associated with 2 years of ADT and possible ADt plus abiraterone, A brachytherapy boost could be also considered.

I f the cancer is N1M0 , it is important to consult with a RO and see what is possible to do and if radiotherapy treatment is indicated.

If the cancer is classified as M1, triple therapy with ADT (lupron or similar) plus chemo and abiraterone or darolutamide seems to be the best treatment for de novo mCSPC.

[Ktm990jan in reply to tango65]

he has advanced cancer, not curable. We were told because of the multiple lymph node spread and pelvic spread it is T4, he has Gleason 9 and is stage 5. His prognosis is 18 months if treatment dont work and 4 years if does.

he’s currently having chemo, lifelong hormones and will get radiotherapy after chemo finished.

[tango65 in reply to Ktm990jan]

My understanding is that a PC could be T4 but it could be M0 . The cancer has only grown locally in the pelvis and there are not distant metases .

cancer.org/cancer/prostate-...

My understanding is that M1 cancers are impossible to cure, M0 cancers may be possible to stop depending where the cancers have extended in the pelvis and if there are affecting or not other organs and radiation treatment is impossible to do.

[Ktm990jan in reply to tango65]

it’s a question we asked but due to the multiple spread to nodes and the aggressive cancer etc it’s classed the same, unfortunately. They are hoping f hormone and chemo will slow the pace and shrink but he will need treatment as long as he lives

[tango65 in reply to Ktm990jan]

Something I learned along the last 20 years dealing with my PC is that one needs to have second opinions in centers of excellence..

I have consulted with the Sloan Kettering in NY, Dana Farber in Boston, UCSF in SFrancisco, UCLA in los Angeles, City of Hope in Duarte Ca etc. There are other centers like MD Anderson in Houston, Cleveland Clinic in Ohio, Ann Arbor in Michigan, Northwesten University in IL, Tulane University in Louisian etc.

cancer.gov/research/infrast...

I wish you the best of luck.

[Ktm990jan in reply to tango65]

we have had, we live in the UK

[MarkBC in reply to Ktm990jan]

Sorry to hear that your husband has joined our club. I am in Canada so I have a similar health care system to yours. I was 55 when diagnosed with Gleason 9. Don't pay too much attention to the prognosis you were given. Those statistics include a large number of much older men who get prostate cancer compared to those of us in our 50's. I'm approaching 4.5 years of life under treatment. I'm living a full life and still have many treatment options available for use in the future. Let's hope your husband responds well to the chemo. It really worked well for me and knocked my cancer down.

[Ktm990jan in reply to MarkBC]

hi MarkBC,

We were told that my husband’s symptoms were of no concern as he was so young, I can’t get my head around why GPS are still saying this is an older person’s disease when clearly it isn’t.

I do wonder why the oncologists give the porgy they do when reading on this site, along with macmillen, the statistics are so much better sounding, it it because I’m only reading good, either way it’s a positive to read you are doing well and it gives me hope for my husband

my husband will get scans after chemo so everything crossed they are good

[Hidden]

Wife of hubby who is 1 year into this shite desease. Shropshire Lass living in France for last 16 years. You will get lots of good advice here on treatments. Sorry you have to use this site

[Darryl Partner]

welcome to Malecare. Subscribe at YouTube.com/malecare and for our newsletter at malecare.org/prostate-cance...

[spw1]

Hi I hope the chemo is working for your hubby. What are the indications? I would not take that prediction of a range of life as anything fixed. There are some doctors who are not aware of the advances. Men on this site have beaten those kind of odds given to them. Keep your hopes up. Best

[Ktm990jan in reply to spw1]

hi, thank you for the reply.

my husband doesn’t finish chemo until 22nd December then apparently we wait for scans for 4-6 weeks.

I cannot understand why the consultants give this prognosis as it clearly isn’t the case for a lot of men, not sure if majority or minority 🤷‍♀️

X

[spw1 in reply to Ktm990jan]

Although they do not do scans, are they following his PSA during scans? My husband underwent Docetaxel chemo and after 4 sessions they agreed that it was not working. I knew in two. The Starting pre chemo PSA was 99 and after 4 it was nearly 468. Then they ordered scans and those with the increased symptoms confirmed that the chemo was not working. If it is not working, it is not a good idea to keep doing it. Blood test is not expensive to keep an eye on the PSA, ALP and LDH readings. Some doctors will give prognosis but it is not accurate in relation to PCa as each individual has a different response to some drugs. Some people are on Abiraterone alone for 5 years and it works for them.

[Ktm990jan in reply to spw1]

hi, my husband is non secreting so doesn’t show, he was at 3 when he i it went to the GO and was the same 2 years on. We did ask the question of how we would. know treatment is working if it can’t be monitored via PSA and they responded with it will still go lower than 3 if working. They did a PSA in September which showed it was lower than 3 which was great, however after reading some posts I can see that the PSA is an artificial reading because of hormones, this is something we will ask at the next appointment.

how did you know that chemo wasn’t working after 2 sessions? I do worry in case it isn’t for my husband.

all we can do is to trust the healthcare system and hope they do the right thing but I am trying to make sure I have as much information as possible to make sure he does get the best possible

X

[spw1 in reply to Ktm990jan]

Hi as your husband has such low PSA, it will not be a good marker for him. My husband's PSA was 99 and kept doubling after each chemo. His symptoms worsened; from not much pain at all to pain. They insisted that it had to be tried a few more times so we did 4 sessions and then 2 of Cabazitaxel. They only stopped after bone scan showed clear progression. We did not need that confirmation as my husband went from relatively fit guy doing press ups (75-100 a day) to not being able to walk without an aid. I hope that the chemo is working for your husband. Wish you well.

[Ktm990jan in reply to spw1]

My husband does suffer with extreme pain from day 2 until day 7/8 but seems to be able to manage after that. He does get side affects throughout the round but they seem to be manageable. I did wonder if chemo wasn’t working now as he started to lose his hair during round 1 but then it started to grow back round 3, this will be one of the questions we ask when the oncologist rings at the end of the month but fingers crossed all ok

very best wishes

[spw1 in reply to Ktm990jan]

Hi my husband had a bit of hair loss after the first round of chemo and then did not lose his hair at all. His chemo side effects lasted a week but were pretty manageable, and pain was definitely felt before the next chemo was due in the third week. He could feel tenderness in new spots and these were later identified as new mets. He was on steroids in between the chemo sessions and if he forgot his 10 mg prednisolone, the pain would remind him of it. It would be great if they would give your husband a scan to see how things are going. You are right about having to trust them. Have you ever had any CgA and prolactin tested? Are the liver functions good? Keep an eye on all round blood tests.

[Mrtroxely]

This site has been a blessing to find.Stay positive.

We can use this site to help others, help ourselves, share info.

It's not just sitting and accepting a strained, stretched level of care from NHS, backed up by a charity(Macmillan)

There is more.....

[Kaliber in reply to Mrtroxely]

❤️❤️❤️

[Bebby1]

welcome

You have come to a safe place, with great advice and genuine interest in your journey

[Kaliber in reply to Bebby1]

❤️❤️❤️

[Doseydoe]

Hi, this is a good place to find answers to your questions. Which in turn will help reduce your fears. I'm into my third year post diagnosis and can attest to the great people here who provide advice and support. You'll be ok, you've got this, cheers DD 😎.

[pakb]

I wouldnt pay too my attn to prognosis stats. Most are based on older treatments/plans. My husband was 49 and in great health when he was diagnosed in Aug 2017 with Gleason 9 aggressive, stage 4 (I never heard of a stage 5- maybe that's new since 2017), PSA of 677 at first PSA check (he had already been on Casodex for 2 weeks before first PSA chevk- that's another story). He had metastasis to hip, pelvic bone, local lymph nodes, several on spine. He started Sept 2017 with ADT (Lupron) and 6 rounds of Taxotere (chemo). After chemo he added abiraterone (Zytiga) plus prednisone to his ADT. He also started Xgeva last year. His scans in 2018 showed great improvement and scans in 2019 and 2020 showed no active metastasis. Dec of 2021 he had one spot on his spine (on T4 spinous process bone) show brighter so he had one high dose spot radiation done. He is definitely sleeps a little longer and some brain fog (not noticeable to others though) but otherwise still works, is social, surfs, works out with weights... he also went vegan and had no alcohol his first 2 years- I think he wanted to feel he had some control and it did help him feel better physically- he now eats no dairy, eggs or meat but does eat seafood and occasionally alcohol. Keep a good notebook for you to write down all things at appointments- and also to jot your questions in. That has helped me a lot. And take time for yourself to have some quiet each day. I take 15 mins each morning to read, have my tea or coffee, write down 3 things I'm grateful for and other thoughts. It really helps!

[Ktm990jan in reply to pakb]

hi Pakb, thank you for the reply.

I will check my profile but it’s meant to say T4, N1, Gleason score 9 stage 5 but that’s in terms of the Gleason score.

It’s all quite new to us and we are still coming to terms with the diagnosis, along with anger that it wasn’t picked up a couple of years ago. I am feeling positive in terms of prognosis after reading others stories, I’m just curious as to why they give those timescales for lifespan.

it is a great idea to keep a notebook, I find the calendar really hasn’t enough space on it for all the appointments etc. I have kept notes on how he has been on chemo so we know when his bad days are and when we can plan doing stuff, that’s been a great help. X

[pakb in reply to Ktm990jan]

Must be a new thing- the Gleason stage. Yes- my husband had symptoms for 2 yrs and family history yet urologist did no tests despite our questions. So I can empathize with your anger. Our oncologists didn't give us any time frame for life. I was always grateful. They told us they didn't know because the treatments were new and the way we were using them was newer as well. We definitely got all our affairs in order (our kids were 14, 16 and 18 at the time if my husband's diagnosis) but after that we have planned a year out and lived each day grateful. It's mot always been easy though.

[Ktm990jan in reply to pakb]

we are trying to not let anger get in the in the way of living but it’s a disease that’s curable if caught early and they are missing common signs and symptoms because of age etc, it’s a common cancer so makes you wonder how they can miss it on so many men, it’s costing lives.

I am thankful our kids are grown up, my husband was 58 2 days ago, but we have a 1 year old granddaughter who he adores, these make him fight as much as he can. I can imagine it was extra difficult when ur children still relatively young.

although his battle is early days I can understand difficult times, everything has changed for sure. I am thankful we both decided, and we’re lucky enough, to retire 4 years ago as we have traveled and just ended life. we are still hoping to do the same once chemo done, maybe a holiday in January, before radiotherapy begins 🤞

[lokibear0803 in reply to pakb]

Yes this is a relatively new thing, called “Gleason Grade Group”:

pcf.org/about-prostate-canc...

Previous Gleason scoring was confusing, so things were updated.

Ktm990jan , it’s a mixed bag — I welcome you to the group, but at the same time I wish you didn’t have to be here. I would not read too much into anyone “prognosis” — these are based on large populations, and your husband is not one of those statistics. Ignore that stuff, focus on getting the right treatments at the right time, and get hopefully many benefits from the wisdom on this site. Get to a center of excellence if you can.

[pakb in reply to lokibear0803]

Got it. So it's a grade not stage. Gleason 9 means the same as grade 5. Thanks for the article!

[Ktm990jan in reply to lokibear0803]

hi, thank you for your reply.

I’m not sure if centre of excellence is the place of trials? The oncologist said chemo and hormones was the best for him in the first instance and then 20 rounds of radiotherapy, if treatments fail then he would able to go for trials

[lokibear0803 in reply to Ktm990jan]

I think I’m seeing that you’re in the UK, but clinicaltrials.gov still lists trials worldwide; for that matter, I’m considering traveling to Europe or Australia for the treatment I may need, if-and-when. So, that’s the clinical trial part.

A “center of excellence” is simply an institution that is considered to be, well, excellent in how they diagnosis and treat. I have only locations in the US, sorry to say, but perhaps our members from across the pond have better information for centers closer to you…here’s what I have:

urologytimes.com/view/clini...

pcf.org/va-partnership/coe/

cancer.gov/research/infrast...

In terms of your MO’s guidance, I lack the expertise to comment. My strategy has been to find an MO that I consider well-informed, current and that I trust and can talk frankly with, and then decide on next steps as a team. Flexibility on both sides of the team is important.

In terms of the wisdom here, I’ve used that to help inform what questions to ask, what ideas to suggest, etc.

[PSAed in reply to lokibear0803]

Thanks for that link and article. Its very well put together, wish I had that when diagnosed.

I was referring to your link on Grading, but can't seem to target that post for some reason. Anyway thanks.

[Bspouse in reply to pakb]

Curious as to how low his PSA has gotten. Husband started really high at 5000 September 2021 . His mets sound similar to your husband's. After ADT, chemo and Zytiga PSA is now hovering around 4 for the past 3 months. We were hoping to get to 'undetectable' but I fear it is going to start going up now.

[pakb in reply to Bspouse]

His PSA got down to 25 after 6 rounds of chemo. And has REALLY taken its time to continue down. It just got to 1 this week- thats the lowest yet! In June is was 2.6 I think. It has always gone down over the last 5 years- but VERY slowly. But his scans have been great and he feels good. So I don't worry about the PSA unless it were to start trending up.

[Bspouse in reply to pakb]

Thank you for your reply. - Good to hear that PSA can keep dropping. He feels good except for tiredness. Praying that next scans show there has been improvement.

[Kaliber]

welcome to the group. Lots of top notch medical info and , hopefully, great camaraderie from other guys and gals in your same situation. Who “ gets it “ more than brothers and sisters rowing the same boat !!! I echo the great welcomes of all the other posters . Sorry you have to be here, but you’ve come to a great supportive place.

❤️❤️❤️