New member looking to support my husband

User

Posted 29 May 2020 at 07:25

Originally Posted by: Online Community Member

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

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

Posted 02 Jun 2020 at 14:50

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

Posted 02 Jun 2020 at 16:51

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

Posted 02 Jun 2020 at 18:51

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

Posted 02 Jun 2020 at 19:59

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

Posted 02 Jun 2020 at 20:45

Very wise and true words at the end there Lyn.

Edited by member 02 Jun 2020 at 20:46 | Reason: Not specified

User

Posted 02 Jun 2020 at 22:52

Wishing you all the best for the consultation.

Some days you just have to create your own sunshine......

User

Posted 02 Jun 2020 at 23:03

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

Posted 03 Jun 2020 at 15:49

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

Posted 03 Jun 2020 at 16:21

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

Posted 03 Jun 2020 at 16:47

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

Posted 03 Jun 2020 at 18:13

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

Posted 03 Jun 2020 at 18:18

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.

User

Posted 03 Jun 2020 at 19:25

Originally Posted by: Online Community Member

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

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

User

Posted 03 Jun 2020 at 19:31

Originally Posted by: Online Community Member

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?

Cheers, John.

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

User

Posted 04 Jun 2020 at 00:12

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.

Dave

User

Posted 04 Jun 2020 at 06:07

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

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?

Cheers, John.

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

Posted 04 Jun 2020 at 07:10

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 17:45 | Reason: Not specified

User

Posted 04 Jun 2020 at 10:04

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

Posted 04 Jun 2020 at 15:17

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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