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User

Posted 07 Sep 2018 at 21:28

Hi I’m hoping someone out there can help me. My husband was diagnosed last Tuesday with prostate cancer on both sides that has spread to his pelvic bone and these last few days have gone by in a blur with constant tears, worry and our whole day taken up with thinking about the future and even if there is one. It’s so so scary and actually makes you realise how much you take for granted. My husband has already started on hormone therapy and has a bone scan booked on Monday to check the cancer hasn’t spread to any other bones. I’m trying to stay positive but he is convinced that the bone cancer has spread and that his not going to get through this and that bone cancer is incurable. Is this true? Please someone help me and give me some positive feedback

User

Posted 19 Sep 2018 at 23:32

Louise, start your own thread tomorrow so that your information doesn't get mixed up with Sharon's - it will be easier for you to keep track of your dad's story as you get more details.

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

User

Posted 07 Sep 2018 at 21:28

User

Posted 08 Sep 2018 at 22:41

If you imagine the prostate to be an orange, T3b means that the cancer has broken out of the orange skin and is clinging to the outside but hadn't spread to nearby organs like the bladder or bowel. N0 means that it hasn't spread to the lymphatic system. M1 means that it has spread to the bone, which you already knew from his pelvis.

Prostate cancer that has spread to bone is still prostate cancer, not bone cancer, and while M1 is incurable that doesn't mean that he won't still be here for many years. Incurable doesn't mean the same as terminal.

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

User

Posted 10 Sep 2018 at 19:05

Sharon

I was diagnosed Gleason 4:5 = 9 in March and T2C. I think the terminology used in the case of your husband is negative and unnecessary your husbands cancer should not have been referred to as nasty. That is of course, just my personal opinion and nothing to do with this Forum

https://prostatecanceruk.org/media/2491080/locally_advanced_prostate_cancer-ifm.pdf

The article above explains what T3b and M1 in your husbands diagnosis mean

https://prostatecanceruk.org/prostate-information/just-diagnosed/advanced-prostate-cancer

There is information in the above document about PCa that has spread to the bones.

with a bone scan a radioactive tracer is injected prior to the scan and the tracer is attracted to any cancer on the bones, showing it to the radiography team

as someone said earlier, please download the toolkit, you will find an answer to all your questions in there and there are plenty of us on here that can help with actual experience of what is described therein. I have just completed a journey in the last week that started in March. My experience is of a large specialist Oncology and Haematology hospital in Bristol, so I have up to date information I can share that may in some part be relevant or help you

glad to hear your OH is on Hormone Therapy. Testosterone deprivation starves prostate cancer wherever it is in the body and without it the cancer cannot grow and will in fact start to shrink.

I felt similar to you as my cancer is in both sides of my prostate totalling 84% and some cores were actually 100% cancer. Never once was any negative terminology used during my initial diagnosis and laying out of my treatment pathway.

Higher Gleason scores are categorised as aggressive but this does not mean aggressive in the way it normally means, it just tells people that it needs dealing with quickly. I was given this information by Lyn on here.

T2C in my case means I scans initially indicated that the cancer was contained within my prostate but to be sure I was sent for a bone scan a CT scan and two further detailed MRI scans one of which was my spine.

The x rays in addition sounds like to me your treatment team are being thorough. MSCC is Metastasis Spinal Cord Compression, that is something that needs to be ruled out as soon as possible, that is a possible reason for the x rays, but keep,asking “why” all the time if you are not given reasons for some treatment your OH is getting.

At all stages I was told this treatment was normal to completely rule out any metastasis of my cancer and in my case I was lucky they all came back negative so I was put onto a purely curative pathway.

I have been on hormone therapy since the beginning of April and I have just finished a course of 20 fractions of radiotherapy in the last week.

My oncologists plan for me is that the radiotherapy will have killed all of the cancer cells in my prostate and to be sure I will stay on hormone therapy for a further two years which means that any remaining cancer cells missed by the radiotherapy will be starved to death by the Hor one therapy.

There many people on here who have experienced a wide range of prostate cancer in varying degrees and will be able to help you come to terms with what your husband must go through and offer advice and support.

Alan

Edited by member 10 Sep 2018 at 20:31 | Reason: Spelling

User

Posted 10 Sep 2018 at 19:34

Hi Sharon

I was diagnosed in March this year, T2c, G4+3=7 but with a PSA of 39.

I have followed a almost identical treatment plan to Pallance. I have found I have learned so much more from Alan and others on this site than any information from my consultant.

I am sure like me you will find this site very helpful in finding someone in a similar situation to your husband.

I am so grateful to Alan for all his posts they have helped me understand the path I am on.

Best wishes

Phil

User

Posted 19 Sep 2018 at 21:41

This illness is tough. Once it’s spread outside the prostate there’s no cure (that doesn’t mean there’ll never be one). Howeve, you try to get travel insurance and their interpretation of terminal is that your life expectancy is shorter and if you have mets then that’s the club your in. I was diagnosed May 2017 with widespread through the bones. I’m still here 16 months later and still doing okay. PSA not registered for 13 months. However, I had private medical cover and went on to Abiraterone instead of chemo. This will, hopefully, become standard first line NHS treatment if approved by NICE in December, thus avoiding the impact of chemo as I have. All I can say really is all the very best and stay strong. Never give up hope. This time two years ago Abi was a trial drug and hopefully it will now become the go to treatment. It changes all the time.

User

Posted 19 Sep 2018 at 21:47

What Tony says is true on the basis that Oncologists will never use the term cured, rather in remission.

But, although Tony’s comments are valid you do not even have a Gleason score for your dad yet, so do not worry in advance until you have the information you need to see where you and your dad are going .

The Gleason score will tell you what the grade of cancer is that your dad has and the T score will give you the full information on how advanced his cancer is so until you have this please do not beat yourself up over outcomes that you do not know even exist

User

Posted 29 Sep 2018 at 15:42

Originally Posted by: Online Community Member

hi barbara and welcome. Who would have thought in a million years we would be here. It does get a bit easier when you get over the shock and actually know what you’re dealing with and I’m hoping once treatment starts things will get even better. My other half has since had his first hormone therapy injection and yesterday we had counselling which tbh don’t really think helped. We were told we need counselling separately which I don’t understand coz I’m just going with my OH for support and it’s not about me. We also have our first consultation with the oncologist on the 17th October to discuss chemotherapy but unsure yet when that will start.

I just wonder if alan or anybody would know about the different stages of cancer. My OH was originally told he was stage 3 but that was when they knew it had spread from the prostate to the pelvic bone but after the bone scan when they found it had spread to the lumber region of his spine and the chest bone (just hot spots). He is now convinced he is stage 4 and keeps saying there isn’t a stage 5 😢

Also my OH is concerned the hormone therapy may not be working. How will he know? He thought his libodo would drop (well that’s what we were told). It’s a bit embarrassing but he still manages to get an erection but doesn’t climax fully but he said it still feels like he has. Does that mean his still producing testosterone?

Hormone Therapy is working if your OH is getting what are known as “dry ejaculations” I have these and the feeling of climax is different as there is no fluid or ejaculate. The lack of ejaculate is a direct effect of the HT so it is working in you OH’s case.

My libido has dropped and I don’t initiate any sex with my OH due to this, but she is still able to get me an erection with a little more work than it used to take, but that’s what a loving partner does.

My wife has been to every meeting I have had about my PCa including every fraction of my Radiotherapy and I am eternally grateful for her support.

Mind you, I thought at one stage it was because she wouldn’t trust me to tell her if I was more ill than she was aware, but she laughed and refuted this.

lastly, our relationship has got stronger as we progress through my journey and although I only have a post Radiotherapy review and PSA test to go to we will do it together

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User

Posted 08 Sep 2018 at 04:51

Hi Sharon,

Sorry you have pitched up here, but it will be most helpful if you could give us some more information about your husband’s condition.

Gleason score: ?+?=?

PSA:?

Staging: T?N?M?

There will be lots of people here to pitch in and tell you of their experiences.

It’s not the end of the world, as so many will tell you.

Best of luck.

Cheers, John

User

Posted 08 Sep 2018 at 08:00

No one uses the "cure word" with cancer, rather they will talk about remission. The good news with prostate cancer is that it can be kept in remission for many years. How many years? Well that depends on the aggressiveness of the cancer and the individual the tests you are undergoing now will help establish the grade.

So it's going to be tough for a while but it will get better once the treatment kicks in an you take back control of your life from prostate cancer..

It's important to keep informed and do not be afraid to challenge the medical profession if you think they are not on the ball..

All the best

User

Posted 08 Sep 2018 at 16:39

Thank you so much. This is such an awful journey that I wouldn’t wish on my worst enemy. His psa levels are not extremely high at 7.64 on16/08/18. His Gleason score is 4 + 3 = 7 and it’s grade group 3. His T stage at diagnosis is T3b. N stage at diagnosis is NO. M stage at diagnosis says MI? i really don’t understand none of this at the moment but I’m sure it will all get clearer as time goes on and I think this is going to be a very very long journey. When my hubbie was told he had cancer l Tuesday it felt like our whole world was falling apart. But after the shock and the tears reality sets in and you somehow get this inner strength and you think right my husband has got cancer and we can deal with this 2 ways. You can sit there crying and feeling sorry for yourself and thinking why me (I’ve never drunk and I’ve never smoked and I’m fairly healthy so WHY ME) or you can think I’ve got to much to live for and this cancer ain’t gonna get the better of me. And to be fair we were going down the latter route. But today my husband gets a letter saying his bone scan is on Monday which is so fast but also the consultant sent my husband a copy of his letter (not sure if it was by mistake) and in it it says it’s a ’nasty‘ cancer in his prostate (both sides) and I fell we are back to square on. I’m getting loads of negative comments saying that this is it now and he just feels he is going to die. It’s totally breaking my heart and his family. This is all so new to us all and I really don’t know what to say or do. Sorry I’ve gone on so much but just hoping that someone can help me out there with some advice and hope x

User

Posted 08 Sep 2018 at 18:58

Hi Sharon,

Nobody can give a definite time line at this stage but the disease progresses in men at varying pace and much will depend on how he responds to treatment which is again variable. Also, new drugs and forms of treatment are becoming available which are extending the lives of men so affected, although with side effects to some extent. Your OH may well be here for quite a number of years. My advice is to try to enjoy them and not let this disease rob you of some quality time you can still share. Another thing is to try to keep active and fit.

Barry

User

Posted 08 Sep 2018 at 20:38

Hi Sharon sorry your husband has joined us, his psa is low and the grading of 4+3 is also is not high so wait for his bone scan take a note pad list questions you want to ask as you will forget as everything seems a blur at times, I remember the consultant telling me mine was aggressive and waiting wasn't a option, thought the end was nigh but things have got better, all the best Andy

User

Posted 08 Sep 2018 at 22:10

Hi Sharon,

i suggest you order by phone or download a copy of the Toolkit from the publications of this website which will be really helpful for you both.

Arthur

User

Posted 08 Sep 2018 at 22:18

Hi Sharon,

I've similar "category" as your OH T3bM1N0 and started with a psa of 394. It's actually good news bone scan is fast, which is should be. Once scans are all done your consultant will have a plan for you. At the consultation take a pen and paper or as I did recorded the consultation on my phone. I also had positive results on both sides of the prostrate, from memory 12/12. Once you have initial dx then you will know what to tackle. It does take a long time to get your head round the, I have cancer bit and it never goes away but you learn to live with you and how to get by. I always talked to my OH about it when it concerned me and she to me when it concerned her and you know, sometimes we didn't talk about it at all as life got on. Sometimes it's easier for those immediately in it then those just on the outside as they don't know how to talk about.

After me dx I've been on HT treatment then chemo and then other treatment for coming up to 4 years. Yes mets isn't curable but yes you can get on with it and there's lots of progress with treatments. I've seen that over a short period of time.

All I can say is your at the worst moment, which is initial dx, after that I found things got better. It's not going to be a walk in the park but you can see look up at the trees and enjoy the sun light!

Good luck with the treatment.

Steven

User

Posted 08 Sep 2018 at 22:28

Dear Sharon

All cancers are ‘nasty’ so try not to dwell on this wording too much.

You are at the most difficult time, still in shock over diagnosis and probably can’t believe it let alone get your head around it.

It is good that your hubby is having the bone scan so soon. The sooner you have all the facts then the sooner your doctors can formulate a plan of treatment. I am sure that you will feel a little better once you are being treated.

Try to take things one step at a time, getting an accurate diagnosis is the important thing now.

The toolkit, as another member has mentioned, is very informative.

Tests and appointments take time, and it is difficult to be left waiting and wondering, and of course thinking the worst.

We have all been there.

Please come back once you know a little more and we will try to help you.

kind regards

Alison

Edited by member 08 Sep 2018 at 22:29 | Reason: Not specified

User

Posted 08 Sep 2018 at 22:41

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

User

Posted 10 Sep 2018 at 13:52

Thanks everyone for your advice and support. It really is such a big help. My husband is in now having his bone scan. Had a bit of a bad day yesterday. I think he is feeling extremely tired but after a good nights sleep we are in a more positive mood today. Does anyone know how long it takes for the bone scan results to come back? This is such a roller coaster of emotions it makes you appreciate life so much.

User

Posted 10 Sep 2018 at 15:17

Hi Sharon
If you look at my bio information my MRI results were discussed with me 2 weeks after the scan.

Bone scan results did take longer, but that was just waiting for my next appointment.

Best wishes
Phil

Edited by member 10 Sep 2018 at 15:23 | Reason: Extra details

User

Posted 10 Sep 2018 at 15:26

Hi Sharon

I had my bone scan on 9 August and got the results on 20th.

Got my first meeting with my Oncologist scheduled for the 17th September.

Good luck

User

Posted 10 Sep 2018 at 15:30

Same for my Bone Scan at Southmead Hospital, two weeks for results

User

Posted 10 Sep 2018 at 18:49

This is so hard and I’m glad I’m not doing it alone. I cant tell you how grateful I am for all the support. I really didn’t realise until now how many people are in the same boat. Now it’s another wait for the bone scan results. I’m not feeling to hopeful coz while my hubs was having his bone scan today the radiography said he had to make a call (thankfully not to his wife) and then informed my husband he needed actually X-rays of his spine. You can’t help but think the worst. Is that normal?

User

Posted 10 Sep 2018 at 19:05

Sharon

https://prostatecanceruk.org/media/2491080/locally_advanced_prostate_cancer-ifm.pdf

The article above explains what T3b and M1 in your husbands diagnosis mean

https://prostatecanceruk.org/prostate-information/just-diagnosed/advanced-prostate-cancer

There is information in the above document about PCa that has spread to the bones.

with a bone scan a radioactive tracer is injected prior to the scan and the tracer is attracted to any cancer on the bones, showing it to the radiography team

glad to hear your OH is on Hormone Therapy. Testosterone deprivation starves prostate cancer wherever it is in the body and without it the cancer cannot grow and will in fact start to shrink.

I have been on hormone therapy since the beginning of April and I have just finished a course of 20 fractions of radiotherapy in the last week.

Alan

Edited by member 10 Sep 2018 at 20:31 | Reason: Spelling

User

Posted 10 Sep 2018 at 19:34

Hi Sharon

I was diagnosed in March this year, T2c, G4+3=7 but with a PSA of 39.

I have followed a almost identical treatment plan to Pallance. I have found I have learned so much more from Alan and others on this site than any information from my consultant.

I am sure like me you will find this site very helpful in finding someone in a similar situation to your husband.

I am so grateful to Alan for all his posts they have helped me understand the path I am on.

Best wishes

Phil

User

Posted 17 Sep 2018 at 14:22

Hi everyone out there. We have been to get the results from the bone scan and for my oh to have his first hormone therapy injection. Unfortunately it wasn’t good news (don’t think there is ever going to be good news when cancer is involved). So the cancer has spread from the prostate to the pelvis, the lumbar region of his spine and the chest wall (The latter two are hotspots). We have been told that now he is on hormone therapy the cancer won’t spread and he has got to start chemotherapy and we are just waiting for a call from the hospital to see the consultant. Has anyone had a similar experience and what was the outcome. we are both trying to stay as positive as we can.

User

Posted 17 Sep 2018 at 16:00

Prostate cancer feeds on testosterone. The hormones will starve the cancer so that it cannot multiply, and the tumours should shrink quite quickly. Giving chemo this early is quite a recent approach after some research showed that it makes the hormones more effective for longer. Some people have a cancer which resists all treatment but for most men, even those with bone mets, the hormones can keep it under control for many years.

The chemo used for prostate cancer isn't one of the toughest types to cope with and although he will have to be careful not to get any infection etc he may find it doesn't affect him too badly. Chemo can't be underestimated but we do have members that have been able to continue working or living an almost normal life during the treatment.

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

User

Posted 18 Sep 2018 at 07:56

Hi Sharon

Looks like I'm on a similar timeline to your OH. I had a very positive meeting with my Oncologist yesterday and he is arranging to get me on Chemo in the next fortnight, 6 sessions 3 weeks apart.

I've got a prescription for steroids (dexamethasone) and stomach medication (lansoprazole) to help prevent stomach intestinal ulceration during the chemo.

My Oncologist said by providing early chemo to the Hormone treatment results have shown that life expectancy has increased between 7-21 months in comparison to patients who were just on the HT.

Got a meeting with the specialist nurses on 27/9 which is a talk for new Chemo patients telling them what is going to happen although to be fair to the Oncologist he covered most of that yesterday.

From my perspective I'm keen to crack on with it, could be a rocky 3 months ahead but all i can do is give it my best shot by trying to keep fit and try and present myslef for the Chemo in the best shape possible.

I'm very lucky, i've got a brilliant supportive family behind me and the NHS treatment i've received since diagnosis has been top drawer.

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