Hi Moozel,
Welcome, you will find plenty of help here. There are friendly people with a wealth of experience.
Sorry hubby's situation is as it is. Your GP is on the ball, and seems to be getting things moving fast. The sort of time scales you are looking at are; one to two weeks to get an appointment, one to two weeks to get a scan/biopsie, one to two weeks to get results. Different trusts do different scans MRI, mpMRI, CT, bone scan, and there are two types of biopsy trus and template.
Some trusts do one scan first then book you in for the next, etc.and it can drag on. It sounds like your trust is doing everything pretty much at the same time which is excellent. Covid may be causing delays, but in your case it may have freed up appointment slots so they can get things moving.
A referral from GP to oncologist has a target of two weeks, you have beat that target. Start of cancer treatment has a target of eight weeks, I think you will beat that target.
My guess is you will get results from all tests after about a week, you will then be called in for a meeting and be told a gleason score and a staging. I am sure another member here will advise what questions to ask at that meeting, take a pen and paper. It can be hard to remember all the numbers.
Psa 76 is not dreadful, mine was 25. As a guide a psa of 10 is about 50% chance of cancer, a psa of 30 is about 100% chance of cancer. So yes expect a diagnosis of cancer. A psa in the hundreds or thousands is advanced cancer, so hubby is not in that class (we hope) . Sadly some people on here have had psa in the 10s and it has progressed to advanced cancer, so this disease has no certainty. Hardly anyone has symptoms of this disease even with high psa. If your prostate gets large enough to block flow of urine you have symptoms, if not you have no symptoms.
Once you have a diagnosis you will start getting treatment options. If your planning on children get things sorted now, this will almost certainly leave hubby infertile. With covid delaying things the first treatment may be hormone therapy, it is very effective in stopping cancer until you can get the more permanent treatment.
Good luck. This will change your life, but is not all doom and gloom. The disease can be beaten.
Edited by member 20 May 2020 at 10:16
| Reason: Not specified
|
User
Hi I’m looking for any advice and guidance whilst my husband is starting his tests for possible prostrate cancer....
He is 52 in general good health and noticed his flow has changed whilst urinating....no other issues with his water works. He had a DVT last September after a long haul flight and is now on blood thinners so we thought it may be a side affect of his medication.
He arranged an appointment last Thursday after I’ve badgered him to check out his prostrate just as a routine for his 50+ health check. We were shocked after bloods were taken and we received a call the following morning for us both the attend together at his gp’s.
His doctor explained his PSA level was extremely high 76.8 and that a physical examination was required. The examine concluded that his prostrate was hard and enlarged. He has been fast tracked for a bone scan today and a biopsy & CT scan next Wednesday and we have been told to expect cancer.
Can anyone help explain why he has had not symptoms with such a high PSA level and what can we expect with lead times on results?
User
Not all men exhibit symptoms of cancer regardless of whether PSA is similar to your husband's or even quite low. There are different types of PCa and some produce more PSA than others. Hubby has not had PCa confirmed yet but from what you say it does seem very likely. His change of urine that prompted his visit is one of the symptoms of PCa but not a definitive one. Have to disagree that a PSA of about 30 is a 100% chance of PCa. Men have had twice that figure and more but have not had PCa.
I would ask for an MRI before biopsy because if it is preceded by biopsy it has to heal before a good MRI can be done. Also, the MRI often helps identify where the biopsy cores may be best taken.
Edited by member 20 May 2020 at 13:59
| Reason: Not specified
Barry |
User
Hi Moozel
Sorry to hear about your husband’s potential diagnosis of prostate cancer.
My husband had it two years ago and I found this forum extremely helpful to me. Obviously your OH is the one that may have to go through treatment but it is also difficult for partners and wives. We have to try and be strong for them when inside we experience disbelief at diagnosis, upset, anger etc. It is a tough road but you will get lots of support.
If you ever want to PM me please feel free. I do not claim to be an expert but if I can help from a different angle of being a wife supporting her husband then please contact me.
My husband had a radical prostectomy followed by radiation treatment a year after his op so can advise on that side of treatment.
Good luck with the results and hopefully he will be seen quite quickly.
Sue
Do as you would be done by |
User
Hi Moozel
Sorry to hear about your husband’s situation. It is a worrying time waiting for tests and results. I’ll keep my fingers crossed for a good outcome.
Stay strong and I wish you both all the best going forward.
Ange x
User
Hi Moo,
My friends in America have an annual PSA test aged over fifty, but it's not considered efficacious here, although women have regular cervical and mammary tests...
Do yourself a favour and order or download the comprehensive information "Tool Kit" publication from this website right now.
Ask your old man to insist on an mpMRI scan before any biopsy (which is considered best practice anyway, although we don't know what resources Consultants have to hand at any time).
Then a transperineal biopsy (if required post-mri) is preferable to the now outdated TRUS (up the bum) biopsy, which involves piercing the bowel wall multiple times and inevitably increases the risk of post-operative infection.
Hope it all turns out for the best. Do let us know.
Cheers, John
User
Not many men do have symptoms really. The PSA on it's own isn't conclusive - if it is any consolation, his PSA is high but not scarily high. We have had men on here with PSA of up to 80 and tests found no cancer at all and we have had men with PSA of 200 or more and it was still contained within the gland - conversely, there have been members with PSA of 3 but it had spread throughout their skeleton. The highest we have seen on here at diagnosis was 13,000. PSA just indicates that there is a problem that needs further assessment, not always how serious the problem might be.
On the other hand, a hard prostate is almost always indicative of prostate cancer so you are right to prepare for a positive diagnosis. Once all the tests have been done, the results are considered by a multidisciplinary team and then your husband will be told what treatments might be suitable for him. Varies by area but some MDTs only meet once each week which is why there can be a wait between tests and next steps.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Hi,
Just a quick one from me as my PSA was similar at diagnosis as your husband’s is now. The change in flow was my only symptom as well. With me it was PSA, followed by DRE which indicated most likely cancer. Then came bone scan, CAT scan, MRI followed by biopsy. That all happened very quickly and led to a diagnosis of advanced PCa. If you take a look at my profile it is all up to date but bear in mind just because your husband and I have the same/similar PSA starting point it doesn’t mean the diagnosis or progression will be the same.
For what it’s worth over three and a half years since treatment started I feel great physically and although the cancer will always be there currently I have no symptoms.
If I can help with any info I will but treatment options have changed (for the better) even in the relatively short time since my diagnosis.
All the best and take care of each other
Dave
User
Hi Lexi it really is torture not knowing as it’s difficult to prepare ourselves mentally....I’m still not sure how to manage my feelings let alone my husbands. I hope you receive good news on the MRI...I’m trying not to obsess until we have a confirmed diagnosis. Take care x
User
Great news about the bone scan. I hope the good news continues.
Dave
User
Hi Moozel, glad bone scan was clear. I can totally relate to your feelings.....my husband had been having physio for sciatica, he also has knee pain.....my mind was working overtime after his diagnosis. He is so fit and active with hill walking, gym etc so HUGE relief to learn bone scan clear.
He has his MRI on Monday and I hope after that the MDT will decide on treatment and we can speak to someone. Its almost 3 months since he had first PSA taken which is worrisome 🌹
User
Wow 3 months...your state of mind must be in tatters. I feel I've lived each hour walking over hot coals and it's only been 12 days to reach DRE, TP biopsy & bone scan.
A question for everyone are the odds better for his lymph nodes also being clear if it hasn't reached his bones?
Edited by member 27 May 2020 at 21:42
| Reason: Not specified
User
I don’t think anyone can give you the answer to that. It would be just guesswork even by the experts. I have spread to bones in two locations and to seminal vesicles but nothing in lymph nodes.
Dave
User
My lymph nodes were cancerous at surgery 5 yrs ago. Only recently has any activity shown up on bones
User
Not all by any means but most surgeons remove a few lymph nodes when they take out the prostate because the lymph nodes are the most likely place for early mets, so a clear bone scan does not infer a clear MRI
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Just received a phone call to invite us into hospital tomorrow for my husband’s results....too say I’m terrified is an understatement for him. Is it usual for the consultant and nurse to attend the meeting even if it’s good news and no pc found or is it an indication that it is bad news 😭😭😭
User
You wouldn't normally have the urologist and nurse at the appointment if the results were all clear, but you already knew they were fairly certain it is cancer from the fact a bone scan had been arranged plus the hard prostate at DRE. I don't think you can interpret anything about the extent of the cancer from knowing a nurse is going to be there - it is probably routine at that hospital to have two staff present.
Try to get some rest tonight - tomorrow you will see that knowing is always better than what imagination can do.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Hi,
So sorry that the results were not what you’d hoped for. I know it not much comfort but the word aggressive doesn’t mean that the cancer is going to be suddenly rampaging through his body. It’s used to describe the risk of the cancer reaching or having reached other parts of the body. My cancer was described as aggressive at the very first urology appointment confirming diagnosis but nearly four years later the only symptoms I have are from the treatment not the cancer.
I can’t give you any reassurances but although the results weren’t what you wanted to hear it’s not necessarily a disaster. We are all scared, sad and worried and that’s ok - just remember to love and look after each other. And don’t ignore your own feelings.
Take care
Dave
User
Hi Moozel, your stress, anxiety, worry are all normal.
The physical effects of this disease are slow, treatments may be curative or at least slow the progress of the disease.
The mental effects of the disease are much quicker they start the first day you have an abnormal psa result. I won't say the mental effects are as serious as the cancer itself, but they have the ability to ruin your life.
Surgery, radiotherapy, hormone treatment will all have some impact on the cancer, possibly kill it; worrying about it will not change the cancer one iota.
Make sure you have a positive mental attitude, you will never go a day without thinking of cancer (well I don't anyway) but make sure it is only at the back of your mind, not at the front. Sure some days you will have hospital appointments and tests and have to decide about treatment plans and you will have to put cancer at the top of your priorities, but every other day push cancer thoughts to the back and bring normal every day thoughts to the front. I'm not saying you suppress the cancer thoughts or go in denial, that's not good for mental health, just give them a low priority.
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User
Radiotherapy is a fairly "gentle" treatment and the majority of men don't have too many side effects from it. In my own case it was just bladder irritation (which quickly went away once treatment finished) and an occasional discharge of mucus from the back passage (which is unexpected at first, but completely harmless).
What does cause side effects is the hormone therapy, but they vary dramatically from one man to the next. Common side-effects include a complete loss of libido, weight gain, getting very emotional, and severe fatigue.
As has been said, it sounds as if your husband is on a curative treatment path. Prostate cancer (it is "prostate" and not "prostrate"!) is eminently treatable and long-term survival rates are excellent. Most men diagnosed die with it, not from it.
I know from personal experience what a huge mental impact a diagnosis can have, but you WILL come to terms with it - everybody does, although that may be hard to believe at the moment - and cancer becomes the "new normal". Most of us here with cancer are living normal, happy lives, and that day will come for you too.
Best wishes,
Chris
Edited by member 04 Jun 2020 at 18:45
| Reason: Not specified
User
I can echo what Chris has said above about happy normal lives. I am probably as happy now as I’ve ever been. There is not a day goes by when I’m not grateful for that happy, normal life. I am still fit, strong and with a near normal sexual function despite the effects of hormone therapy and advancing years.
All positive stuff even though at my first oncology appointment I was told that PCa will kill me (my profile mentions the not so positive emotional effects)
Take care
Dave
User
Hi Moozel, I am sorry to hear of your husband’s diagnosis and for your pain and anguish. I am glad to read from the other members that this physical pain doesn’t last. I feel my every moment is consumed with PC 🌹
User
Sorry to hear of your husbands PCa Moozel but as many on here have already said, don't despair, his diagnosis has a lot of positives. Mine was almost exactly the same, 5 of 5 sample on left side, 3 of 5 on right in my case, plus a suspected nymph node, T3 was my stage. I had hormone therapy, radiotherapy and HDR brachytherapy as not suitable candidate for surgery.
Diagnosed in 2015, now almost 5 years later and I have no real side effects and my PSA is less than 0.1 for the 3rd time, so whatever you do not let this get you down or let it get on top of either of you. My wife gave me the greatest support for which I am eternally grateful, so just remember, you can and you will beat this.
All my best to you both going forward
Mike
User
Just an update.....It’s been 8 weeks since my husband had his 1st hormone injection....his first PSA test this week has his levels down to 6 and his testosterone under 1 which is good news that it’s heading in the correct direction. We will meet with his Oncologist next Tuesday for the first time so hopefully will get a better understanding of his cancer and a start date for his radiotherapy therapy. He has fatigue and strong hot flushes which could be the reason for his fatigue with disturbed sleep. Other than that he seems to be plodding on. His mental health seems to low but it’s still early days since his diagnosis, we hope he can chat to a counsellor soon to help with his anxiety.
Edited by member 13 Aug 2020 at 15:55
| Reason: Not specified
User
Nice that the psa is coming down. I don't get many hot flushes but they are worse in hot weather, so hopefully once this heatwave is over he might not get them as much. I know that ANDY62 runs some courses on surviving hormone therapy, it might be worth finding when he is doing the next one. I didn't know about this forum until I was just finishing treatment, but as you are at the beginning Andy's course may help you for another two years.
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User
Well wishes to you and your husband Moozel 🌹
User
So 20 fractions , a few tips wear boxers , and joggers most comfortable. As you might know first 10 fractions seem ok but sometimes the following 10 is when the side effects kick in I found , but every one is different . Get a toilet card from Macmillan centre or even from this site , I only had to use it once but handy to have . Are you having treatment locally ? Know where your nearest toilet is , I carried a bottle in car and towels . During my treatment it was like a family atmosphere ! Yes 99% of patients knew each other well after a wk ! And we exchanged tips and ideas , drink a lot of water every day . Best of luck
User
Forgot , let me assure this cancer is so so common I personally know 8 of my acquaintances /friends who had it or going thru treatment I found it very very reassuring talking to my friend who had it 6 yrs ago he gave me lot of encouragement and tips , which helped me a lot !!!!
User
The clear bone scan is good news and as you say offers the chance of a permanent remission with whole pelvis RT.
I would also ask your ONCO about adjuvant chemotherapy or Abiraterone too. That may be appropriate as your fella is so young.
User
Good news. Don’t get hung up on what the exact PSA figure is. Mine was 4.6 two months after RT, 2.0 six months later, and bottomed out at 1.4 six months further on. My oncologist said at the start of my treatment that a nadir (minimum value) of 2 or less he’d consider a successful outcome. Your husband still has a prostate and is still producing PSA. What matter is how it changes between tests.
Best wishes,
Chris
User
Yes, good news indeed!
Enjoy Christmas together.
Angex
User
Happy Christmas news Moozel!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Hi Moozel,
Welcome, you will find plenty of help here. There are friendly people with a wealth of experience.
Sorry hubby's situation is as it is. Your GP is on the ball, and seems to be getting things moving fast. The sort of time scales you are looking at are; one to two weeks to get an appointment, one to two weeks to get a scan/biopsie, one to two weeks to get results. Different trusts do different scans MRI, mpMRI, CT, bone scan, and there are two types of biopsy trus and template.
Some trusts do one scan first then book you in for the next, etc.and it can drag on. It sounds like your trust is doing everything pretty much at the same time which is excellent. Covid may be causing delays, but in your case it may have freed up appointment slots so they can get things moving.
A referral from GP to oncologist has a target of two weeks, you have beat that target. Start of cancer treatment has a target of eight weeks, I think you will beat that target.
My guess is you will get results from all tests after about a week, you will then be called in for a meeting and be told a gleason score and a staging. I am sure another member here will advise what questions to ask at that meeting, take a pen and paper. It can be hard to remember all the numbers.
Psa 76 is not dreadful, mine was 25. As a guide a psa of 10 is about 50% chance of cancer, a psa of 30 is about 100% chance of cancer. So yes expect a diagnosis of cancer. A psa in the hundreds or thousands is advanced cancer, so hubby is not in that class (we hope) . Sadly some people on here have had psa in the 10s and it has progressed to advanced cancer, so this disease has no certainty. Hardly anyone has symptoms of this disease even with high psa. If your prostate gets large enough to block flow of urine you have symptoms, if not you have no symptoms.
Once you have a diagnosis you will start getting treatment options. If your planning on children get things sorted now, this will almost certainly leave hubby infertile. With covid delaying things the first treatment may be hormone therapy, it is very effective in stopping cancer until you can get the more permanent treatment.
Good luck. This will change your life, but is not all doom and gloom. The disease can be beaten.
Edited by member 20 May 2020 at 10:16
| Reason: Not specified
|
User
Thank you for your quick response and positive outlook for my husband...we are both terrified and at the stage of imagining all sorts of outcomes so it’s good to know that his PSA score ahead of all his tests isn’t absolute for advanced cancer.
We have adult children and grandchildren so not worried about issues with infertility....I’m still hopeful that it’s something else underlying that has caused the high PSA level and he comes pack as clear.
I want this stage to be over but realise that tests & results are what they are....I will try to hold my head & tears until we have the diagnosis and support him without burdening him with my fears.
User
Not all men exhibit symptoms of cancer regardless of whether PSA is similar to your husband's or even quite low. There are different types of PCa and some produce more PSA than others. Hubby has not had PCa confirmed yet but from what you say it does seem very likely. His change of urine that prompted his visit is one of the symptoms of PCa but not a definitive one. Have to disagree that a PSA of about 30 is a 100% chance of PCa. Men have had twice that figure and more but have not had PCa.
I would ask for an MRI before biopsy because if it is preceded by biopsy it has to heal before a good MRI can be done. Also, the MRI often helps identify where the biopsy cores may be best taken.
Edited by member 20 May 2020 at 13:59
| Reason: Not specified
Barry |
User
Hi Moozel
Sorry to hear about your husband’s potential diagnosis of prostate cancer.
My husband had it two years ago and I found this forum extremely helpful to me. Obviously your OH is the one that may have to go through treatment but it is also difficult for partners and wives. We have to try and be strong for them when inside we experience disbelief at diagnosis, upset, anger etc. It is a tough road but you will get lots of support.
If you ever want to PM me please feel free. I do not claim to be an expert but if I can help from a different angle of being a wife supporting her husband then please contact me.
My husband had a radical prostectomy followed by radiation treatment a year after his op so can advise on that side of treatment.
Good luck with the results and hopefully he will be seen quite quickly.
Sue
Do as you would be done by |
User
Hi Moozel
Sorry to hear about your husband’s situation. It is a worrying time waiting for tests and results. I’ll keep my fingers crossed for a good outcome.
Stay strong and I wish you both all the best going forward.
Ange x
User
Hi Moo,
My friends in America have an annual PSA test aged over fifty, but it's not considered efficacious here, although women have regular cervical and mammary tests...
Do yourself a favour and order or download the comprehensive information "Tool Kit" publication from this website right now.
Ask your old man to insist on an mpMRI scan before any biopsy (which is considered best practice anyway, although we don't know what resources Consultants have to hand at any time).
Then a transperineal biopsy (if required post-mri) is preferable to the now outdated TRUS (up the bum) biopsy, which involves piercing the bowel wall multiple times and inevitably increases the risk of post-operative infection.
Hope it all turns out for the best. Do let us know.
Cheers, John
User
Not many men do have symptoms really. The PSA on it's own isn't conclusive - if it is any consolation, his PSA is high but not scarily high. We have had men on here with PSA of up to 80 and tests found no cancer at all and we have had men with PSA of 200 or more and it was still contained within the gland - conversely, there have been members with PSA of 3 but it had spread throughout their skeleton. The highest we have seen on here at diagnosis was 13,000. PSA just indicates that there is a problem that needs further assessment, not always how serious the problem might be.
On the other hand, a hard prostate is almost always indicative of prostate cancer so you are right to prepare for a positive diagnosis. Once all the tests have been done, the results are considered by a multidisciplinary team and then your husband will be told what treatments might be suitable for him. Varies by area but some MDTs only meet once each week which is why there can be a wait between tests and next steps.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
"Start of cancer treatment has a target of eight weeks, I think you will beat that target."
That is not quite correct. Hospitals have a target of starting treatment within 62 days of the treatment choice being made, not 62 days from diagnosis. Even then, it is only a target and hospitals are not being held to it during COVID anyway. If someone asks for a second opinion or transfer to another hospital, the clock stops ticking whereas if the patient has been given the options and asks for time to think about it, the clock doesn't start ticking.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Hi,
Just a quick one from me as my PSA was similar at diagnosis as your husband’s is now. The change in flow was my only symptom as well. With me it was PSA, followed by DRE which indicated most likely cancer. Then came bone scan, CAT scan, MRI followed by biopsy. That all happened very quickly and led to a diagnosis of advanced PCa. If you take a look at my profile it is all up to date but bear in mind just because your husband and I have the same/similar PSA starting point it doesn’t mean the diagnosis or progression will be the same.
For what it’s worth over three and a half years since treatment started I feel great physically and although the cancer will always be there currently I have no symptoms.
If I can help with any info I will but treatment options have changed (for the better) even in the relatively short time since my diagnosis.
All the best and take care of each other
Dave
User
Thank you for your response and kind words...I would love a chat once I know what we are dealing with as I know it’s difficult not to burden my husband with all my fears & feelings on what he is already feeling 😭
User
Hi Moozel, my husband has just been diagnosed. Due to CV19 he couldn’t get an MRI before biopsies (TRUS) he had elevated PSA 12.9 and abnormal DRE. Eventually his TRUS revealed a G8 cancer and a bone scan was clear. We still await an MRI.
We have decided not to tell to our family at this stage as we need to get used to the diagnosis ourselves and prefer to be able to tell them once treatment options are known.
The waiting and the unknown is torturous.... I made enquires a few weeks ago re private MRI....but anyway here we are today.... 😘 I wish you well 🌹
User
Hi Lexi it really is torture not knowing as it’s difficult to prepare ourselves mentally....I’m still not sure how to manage my feelings let alone my husbands. I hope you receive good news on the MRI...I’m trying not to obsess until we have a confirmed diagnosis. Take care x
User
Hi just updating on my husband’s progress after all the support you have all offered.
We are extremely thankful for such a fast response from our wonderful NHS with the original call back on the 15th May to advise us of the high PSA level. My husband received his Bone scan on the 20th May and a TP biopsy this morning, some suspect samples taken but hopefully receive the results next week.
He will have a CT scan on Monday afternoon and hopefully all results other than the Bone scan which has already came back clear will be ready for us within 7 days.
A major sigh of relief hearing his bone scan was clear as he is having some hip & lower back pain but that must be age related!
I’m hoping Lady Luck is still by his side.
Edited by member 27 May 2020 at 13:00
| Reason: Not specified
User
Great news about the bone scan. I hope the good news continues.
Dave
User
Hi Moozel, glad bone scan was clear. I can totally relate to your feelings.....my husband had been having physio for sciatica, he also has knee pain.....my mind was working overtime after his diagnosis. He is so fit and active with hill walking, gym etc so HUGE relief to learn bone scan clear.
He has his MRI on Monday and I hope after that the MDT will decide on treatment and we can speak to someone. Its almost 3 months since he had first PSA taken which is worrisome 🌹
User
Wow 3 months...your state of mind must be in tatters. I feel I've lived each hour walking over hot coals and it's only been 12 days to reach DRE, TP biopsy & bone scan.
A question for everyone are the odds better for his lymph nodes also being clear if it hasn't reached his bones?
Edited by member 27 May 2020 at 21:42
| Reason: Not specified
User
I don’t think anyone can give you the answer to that. It would be just guesswork even by the experts. I have spread to bones in two locations and to seminal vesicles but nothing in lymph nodes.
Dave
User
My lymph nodes were cancerous at surgery 5 yrs ago. Only recently has any activity shown up on bones
User
Not all by any means but most surgeons remove a few lymph nodes when they take out the prostate because the lymph nodes are the most likely place for early mets, so a clear bone scan does not infer a clear MRI
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Originally Posted by: Online Community MemberI don’t think anyone can give you the answer to that. It would be just guesswork even by the experts. I have spread to bones in two locations and to seminal vesicles but nothing in lymph nodes.
Dave
I know it’s a million in one question to ask about his lymph nodes but I was hoping that the experience and diagnosis of you guys that I could relax a little until we receive the results if it was unusual to receive a clear on bones but still have mets elsewhere:(
Waiting game I suppose and hoping Lady Luck stays with us...
User
Just received a phone call to invite us into hospital tomorrow for my husband’s results....too say I’m terrified is an understatement for him. Is it usual for the consultant and nurse to attend the meeting even if it’s good news and no pc found or is it an indication that it is bad news 😭😭😭
User
Moozel
Every meeting I have ever had with a consultant for what ever reason there has been a nurse present. I don't know why especially just for follow ups etc.
Good luck with your results
Cheers
Bill
User
It’s perfectly natural and normal to be scared. I was that scared I was practically numb. With that in mind take a notebook with you and ask as many questions as you can think of and try to write the answers down because you are not likely to remember everything.
You already know that the bone scan was clear so that’s a good start.
I hope your husband’s consultant is as kind and informative as mine. Chris (my wife) and I are still asking questions nearly four years on and always get a full explanation, sometimes including graphs and drawings. It can be very interesting - if you can forget it’s you being discussed!
All the very best to both of you for tomorrow.
Dave
User
You wouldn't normally have the urologist and nurse at the appointment if the results were all clear, but you already knew they were fairly certain it is cancer from the fact a bone scan had been arranged plus the hard prostate at DRE. I don't think you can interpret anything about the extent of the cancer from knowing a nurse is going to be there - it is probably routine at that hospital to have two staff present.
Try to get some rest tonight - tomorrow you will see that knowing is always better than what imagination can do.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Very wise and true words at the end there Lyn.
Edited by member 02 Jun 2020 at 21:46
| Reason: Not specified
User
Wishing you all the best for the consultation.
Some days you just have to create your own sunshine...... |
User
From our diagnosis appointment onwards I have asked for copies of documents shared for own own records. It’s amazing how quickly you can forget or write something down a tad incorrect.
i like to have hard copies of all and it made us feel more in control too.
Tricky times generally and I can still remember 20th December 2016 when my husband got the results from his biopsy.
Thinking of you
User
Aggressive prostrate cancer including 1 lymph node, devastated and trying to understand what my husbands diagnosis actually means...
Gleason score 4+5 left side of prostrate with 10 out of 12 samples positive and 12 out of 12 samples positive for right side...some 5+4 right side of prostrate
TX, NX, MO
HR therapy for 3 months then radiotherapy to follow
User
Sorry to read your unfortunate diagnosis.
What are TX NX M0? There should be numbers where the Xs are. If you don’t know then phone the nurse and ask. Did she give you her business card?
There will be lots of guys here with similar diagnoses who are doing well with treatment, so don’t despair!
Best of luck.
Cheers, John.
User
Hello Moozel
I’m sorry to read about your partner’s diagnosis.
I live with Jonathan who was diagnosed with a Gleason 9 (5+4) in January 2019.
I remember hearing the diagnosis and how totally ‘gutting’ it was, even though we’d been expecting to hear that he had cancer.
Always here if you want to talk.
Jane x
User
Hi,
So sorry that the results were not what you’d hoped for. I know it not much comfort but the word aggressive doesn’t mean that the cancer is going to be suddenly rampaging through his body. It’s used to describe the risk of the cancer reaching or having reached other parts of the body. My cancer was described as aggressive at the very first urology appointment confirming diagnosis but nearly four years later the only symptoms I have are from the treatment not the cancer.
I can’t give you any reassurances but although the results weren’t what you wanted to hear it’s not necessarily a disaster. We are all scared, sad and worried and that’s ok - just remember to love and look after each other. And don’t ignore your own feelings.
Take care
Dave
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Moozel
There have been a lot of excellent comments posted. When you sit with the consultant, and nurse, they will give you the news. One thing you must keep stored away is there are a multitude of treatments that address PCa at all stages. In my case I was frustrated that the consultant didn’t give a definitive path, rather he gave me a range of treatment options and said ultimately it’s the patients choice. So to help with the choice Cancer UK offers a fantastic toolkit that reviews treatment options - and there are many good options. Make use of this, it’s excellent. Try to avoid reading too many unqualified blogs and web sites - they only confuse at best, at worst give bad information. My Macmillan nurse was amazing and always responded to my questions- in hindsight some were stupid questions but she always treated me with respect - so don’t be afraid of asking questions, when you leave the rooms get a contact number. Another recommendation I was given was don’t be afraid of mentioning it to people particularly older men as I suddenly found a whole lot of people I knew had it and their comments and experiences were absolute gold.
When you leave the consulting rooms try not to let the mist of cancer hide the fact there are many excellent treatment options. I had a less than good prognosis When I walked out of the rooms - 2 years on my life is fantastic and I am looking forward to a lot more of it.
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Originally Posted by: Online Community MemberAggressive prostrate cancer including 1 lymph node, devastated and trying to understand what my husbands diagnosis actually means...
Gleason score 4+5 left side of prostrate with 10 out of 12 samples positive and 12 out of 12 samples positive for right side...some 5+4 right side of prostrate
TX, NX, MO
HR therapy for 3 months then radiotherapy to follow
I think that could be a far better diagnosis than you feared - the mention of RT in 3 months suggests that at this point, they still believe it could be a curative treatment path.
'Aggressive' is used to define it because the total Gleason is 8 or above. 'Aggressive' does not mean 'advanced'.
The TX NX indicates that they are still waiting for some diagnostic information - the scan results. At the minute, they can't give you a staging (the T number) or say whether there are affected lymph nodes further afield (the N number) so they use X to show that they don't know yet. However, the offer of RT indicates that they have reason to be hopeful that the T is either T2 or T3 and that the N is going to be N0.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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X indicates that they don't have the results yet. We see it most commonly with MX, meaning that someone has had their MRI and biopsy but the uro decided not to request a bone scan due to low numbers, for example where a man is diagnosed G6(3+3) T1a N0 MX.
In Moozel's case, the bone scan was done first and the biopsy second so they have those bits of the diagnosis - G9(5+4) TX NX M0 - but I think the MRI was only done yesterday?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Hi Moozel, your stress, anxiety, worry are all normal.
The physical effects of this disease are slow, treatments may be curative or at least slow the progress of the disease.
The mental effects of the disease are much quicker they start the first day you have an abnormal psa result. I won't say the mental effects are as serious as the cancer itself, but they have the ability to ruin your life.
Surgery, radiotherapy, hormone treatment will all have some impact on the cancer, possibly kill it; worrying about it will not change the cancer one iota.
Make sure you have a positive mental attitude, you will never go a day without thinking of cancer (well I don't anyway) but make sure it is only at the back of your mind, not at the front. Sure some days you will have hospital appointments and tests and have to decide about treatment plans and you will have to put cancer at the top of your priorities, but every other day push cancer thoughts to the back and bring normal every day thoughts to the front. I'm not saying you suppress the cancer thoughts or go in denial, that's not good for mental health, just give them a low priority.
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Our first meeting is already a blur and I'm not sure what was now said....I made some notes but Karl had a CT scan after his biopsy so I assume a MRI will be arranged to confirm staging.
It will take me awhile to process the news and all the groups help and kind words are greatly appreciated.
His prostrate is positive on both sides along with 1 node that's all I can recall.
22 samples tested positive with a mix of 4 & 5 grade cells.
He has started Bucalutamide & Tamsulosin to help keep his bladder in good working order whilst they reduce his testosterone.
His injection is booked for the 19th June and then 3 months later will start radiotherapy.
I know need to learn what life will be like for us both so point me in the right direction please.
Thank you
Originally Posted by: Online Community Member
X indicates that they don't have the results yet. We see it most commonly with MX, meaning that someone has had their MRI and biopsy but the uro decided not to request a bone scan due to low numbers, for example where a man is diagnosed G6(3+3) T1a N0 MX.
In Moozel's case, the bone scan was done first and the biopsy second so they have those bits of the diagnosis - G9(5+4) TX NX M0 - but I think the MRI was only done yesterday?
User
Radiotherapy is a fairly "gentle" treatment and the majority of men don't have too many side effects from it. In my own case it was just bladder irritation (which quickly went away once treatment finished) and an occasional discharge of mucus from the back passage (which is unexpected at first, but completely harmless).
What does cause side effects is the hormone therapy, but they vary dramatically from one man to the next. Common side-effects include a complete loss of libido, weight gain, getting very emotional, and severe fatigue.
As has been said, it sounds as if your husband is on a curative treatment path. Prostate cancer (it is "prostate" and not "prostrate"!) is eminently treatable and long-term survival rates are excellent. Most men diagnosed die with it, not from it.
I know from personal experience what a huge mental impact a diagnosis can have, but you WILL come to terms with it - everybody does, although that may be hard to believe at the moment - and cancer becomes the "new normal". Most of us here with cancer are living normal, happy lives, and that day will come for you too.
Best wishes,
Chris
Edited by member 04 Jun 2020 at 18:45
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I can echo what Chris has said above about happy normal lives. I am probably as happy now as I’ve ever been. There is not a day goes by when I’m not grateful for that happy, normal life. I am still fit, strong and with a near normal sexual function despite the effects of hormone therapy and advancing years.
All positive stuff even though at my first oncology appointment I was told that PCa will kill me (my profile mentions the not so positive emotional effects)
Take care
Dave
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Hi Moozel, I am sorry to hear of your husband’s diagnosis and for your pain and anguish. I am glad to read from the other members that this physical pain doesn’t last. I feel my every moment is consumed with PC 🌹
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Sorry to hear of your husbands PCa Moozel but as many on here have already said, don't despair, his diagnosis has a lot of positives. Mine was almost exactly the same, 5 of 5 sample on left side, 3 of 5 on right in my case, plus a suspected nymph node, T3 was my stage. I had hormone therapy, radiotherapy and HDR brachytherapy as not suitable candidate for surgery.
Diagnosed in 2015, now almost 5 years later and I have no real side effects and my PSA is less than 0.1 for the 3rd time, so whatever you do not let this get you down or let it get on top of either of you. My wife gave me the greatest support for which I am eternally grateful, so just remember, you can and you will beat this.
All my best to you both going forward
Mike
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Just an update.....It’s been 8 weeks since my husband had his 1st hormone injection....his first PSA test this week has his levels down to 6 and his testosterone under 1 which is good news that it’s heading in the correct direction. We will meet with his Oncologist next Tuesday for the first time so hopefully will get a better understanding of his cancer and a start date for his radiotherapy therapy. He has fatigue and strong hot flushes which could be the reason for his fatigue with disturbed sleep. Other than that he seems to be plodding on. His mental health seems to low but it’s still early days since his diagnosis, we hope he can chat to a counsellor soon to help with his anxiety.
Edited by member 13 Aug 2020 at 15:55
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Nice that the psa is coming down. I don't get many hot flushes but they are worse in hot weather, so hopefully once this heatwave is over he might not get them as much. I know that ANDY62 runs some courses on surviving hormone therapy, it might be worth finding when he is doing the next one. I didn't know about this forum until I was just finishing treatment, but as you are at the beginning Andy's course may help you for another two years.
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Well wishes to you and your husband Moozel 🌹
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Had our first visit to meet the oncologist and he explained more about my husbands pc.
Without having an MRI he suggested that he was likely to be T4 N1 M0 with both side of the prostrate containing cancer, seminal vessels, 1 lymph node and his bladder.
He explained the chances of a cure were slim but they will radiate the full pelvic area and we may find he is one of the lucky ones that is cured.
Radiotherapy is scheduled to start in 4 weeks over a 4 week period.
Feeling exhausted for him :(
Edited by member 27 Aug 2020 at 18:26
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So 20 fractions , a few tips wear boxers , and joggers most comfortable. As you might know first 10 fractions seem ok but sometimes the following 10 is when the side effects kick in I found , but every one is different . Get a toilet card from Macmillan centre or even from this site , I only had to use it once but handy to have . Are you having treatment locally ? Know where your nearest toilet is , I carried a bottle in car and towels . During my treatment it was like a family atmosphere ! Yes 99% of patients knew each other well after a wk ! And we exchanged tips and ideas , drink a lot of water every day . Best of luck
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Forgot , let me assure this cancer is so so common I personally know 8 of my acquaintances /friends who had it or going thru treatment I found it very very reassuring talking to my friend who had it 6 yrs ago he gave me lot of encouragement and tips , which helped me a lot !!!!
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The clear bone scan is good news and as you say offers the chance of a permanent remission with whole pelvis RT.
I would also ask your ONCO about adjuvant chemotherapy or Abiraterone too. That may be appropriate as your fella is so young.
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Exactly 2 months today my husband completed his final radiotherapy treatment and received the good news thus afternoon that his PSA level is sitting at 2.37 and Testosterone under 1.
We can now look forward to ending 2020 on a high and hopefully he continues in 2021 with his PSA dropping under 1.
Stay safe everyone and enjoy your Christmas 🎄
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Hi Moozel, nice to hear from you again. Yes let's have a better 2021. I think this year needs tearing from the history books.
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