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Recently diagnosed at 46. T3b Gleason 9

User
Posted 05 April 2017 18:34:34(UTC)
Hello! I'm 46 and was diagnosed in November 2016 with T3b (threatening T4 whatever that means?) Gleason 9, stage 5.

Luckily CT and bone scan came up clear so hopefully have caught it in time before spreading further.

I was started on HT immediately in November and have HD Brachytherapy due in May followed for 5 weeks of external beam RT.

The wife is not dealing with it well so we don't really talk about it which is not healthy for either of us.

Be good to hear from anyone who has gone or is going through a similar journey.

Sorry about user name, was having a bad day and it seemed apt at the time!

Cheers
User
Posted 07 April 2017 06:20:47(UTC)
WTF

Just bumping you up the list, your post seems to have been delayed a long time in the moderation queue.

Thanks Chris
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User
Posted 07 April 2017 06:20:47(UTC)
WTF

Just bumping you up the list, your post seems to have been delayed a long time in the moderation queue.

Thanks Chris
Thanked 2 times
User
Posted 07 April 2017 07:33:38(UTC)

As Chris says WTF you do see to have got a bit lost in the moderating. The site isn't perfect unfortunately, but moderating is a protection for us all so serves a purpose.

I'm sure you will get replies now that Chris has bumped you up the list but I just wanted to add that apart from advice we do offer support to both the man and his partner.

As a wife I do understand how your's feels. Her whole world has imploded and she is frightened. I'm sure you are too but she is lost and hurting.

I wish you could talk together because talking helps to clear the air. Perhaps she feels that by expressing her fears she is laying an extra burden on you that you could do without at the moment.

To get through this you really need to work together.

We can't control the winds - but we can adjust our sails
User
Posted 07 April 2017 07:41:33(UTC)

Hi, WTF!

In my opinion it would be better for both wife and you to deal with the issue and get familiar with it.

This is a good site for help, support and knowledge of the disease. You will find out many cases like yours and it helps.

My best wishes,

Lola.

User
Posted 07 April 2017 13:02:24(UTC)

Hi Sussex Man,

 

I can appreciate your previous name, as it covers how we felt too ;-)

My husband David was diagnosed with TB3 Gleason 9 in October 2015

 

He has since then had three moths hormone treatment before having HDR Brachytherapy on April 19th last year (2016) followed by 5 weeks of radiotherapy, and he will be on Prostrap hormone treatment until June 2018.

His last the PSA test have come back <0.1

 

The radiotherapy he found hard going as he had to live away from home as we live rurally, we rented a small place for him to stay near the hospital, he has his treatment Monday to Friday and came home for the weekends.

 

He found the radiotherapy gave him disturbed nights and he had to urinate regularly through the night, he had little sleep and he was very tired.

Some men I have heard breeze through this treatment, and carry on working. David could bot have managed to do this, fortunately he did not have to.

 

The brachytherapy was in his words much easier, he was in hospital overnight, and came home; he was cutting the grass within a few days!

 

The side effects of all this are no libido, ED he has aches in his body, and days of regular fatigue.

 

David does exercise every day, we have an acre of garden where we grow or own veg. David is a professional musician and most days he sings and plays music, although he has not been doing ‘ gigs’ for a while, he is now getting to the stage where he wants to gig again.

 

From my perspective as David’s wife, it has been hard, but we have found talking about it helps but it has sometimes been difficult for both of us.

I’ve made mistakes and sometimes I said the wrong things. We have cried and laughed, sometimes the PCancer took over our lives ruled us.

Now we are in a stronger better place and we are making plans. We have had three holidays, been to visit people and joined our local prostate cancer support group, and I wrote an article for them from a wife or partner perspective., doing this helped me a great deal.

 

If you would like to converse further please feel free to direct message me.

 

 

 

 

 

 

 

 

 

User
Posted 07 April 2017 20:10:13(UTC)
Hi Leila,

Sounds like we're following a similar path, you husband is lucky to have such a supportive partner. I guess early days but my wife has done no research into my diagnosis and would certainly not be on a site like this. I guess this does frustrate me as I feel I'm fighting this alone at the moment. I'm sure we'll work it out, I know HT has changed me so we're both adjusting and I know I can be a mood hoover sometimes!

Can already identify with the loss of libido and ED but making sure it's used once a week!

Have stepped up exercise going to gym 5 days a week and running 3 days a week.

Would be interesting to hear what everyone's opinion is on diet. I've cut out meat and dairy and have adopted a plant based diet, seems to be a lot of evidence that animal protein is like gasoline for prostate cancer?

It's not the amount of years in your life it's the amount of life in your years....

User
Posted 07 April 2017 21:34:15(UTC)

Hi Sussexman,
I think we all deal with diagnosis so differently. My husband would never dream of coming on a site like this but i find it extremely helpful in all sorts of ways.
I don't know what your circumstances are but my husband is 44 and I'm 42 with 2 young kids of 5 and 7. I often get accused of not caring or not understanding where in reality I'm just trying to keep things as normal as possible for the kids and getting on with life because I have to.
If you don't have kids, were there plans to have any or even if you do have kids was there thoughts of having more.
I hope you are able to talk with your wife, I'm sure she like the rest of us is fearful of something. If you can get it out in the open you can face the fears together.
Even if your wife won't come on the forum she can phone or message the nurses if she has questions. I found this very helpful.
Good luck with your treatment and post whenever you have questions or just a need to voice something.
Julie

User
Posted 07 April 2017 21:36:15(UTC)
Our diet has changed, very little dairy, lots of veg, fish or chicken once a week. David also takes Pomi-t lots of tomatoes, broccoli turmeric, apricot kernels, we have carefully researched the diet.
David loves cheese, and would find a totally veggie diet difficult, so we have compromised the best we can.
The Pomi-t has been devised by an oncologist from Bedford, with some research from Cambridge.
It is hard to come to terms with the changes the HT has on his body, we both were aware of the potential impact both physically and emotionally.Thankfully we are able to talk, I've done most of the research and reading as David was so dumbstruck he felt frozen, it also gave me something to think about and do whilst we he was going through treatments.
David has days when he feels tired and sometimes he gets emotionally low, but the excercise and gardening seems to have helped this. He has not really had any significant mood swings. I hope this helps.
Leila

User
Posted 09 April 2017 18:00:19(UTC)

HI Sussexman 

My hubby was diagnosed age 50 TB3 no mets ,he had a TURP and radiotherapy for 7 weeks , (he is 59 now ) he had no problems at all with the radiotherapy and each treatment only lasted about 90 seconds it was just the travel parking and getting changed that took the time, you will also meet other men attending for their radiotherapy, some maybe well into their treatment and we actually got treatment envy of those eg in week 5 when he was on week 1.

The hormone blockade made my husband very tired he also had to have radiotherapy for his breast to stop them growing, but this was not very successful and he was prescribed tamoxifen. hot flushes are also a problem for him.

Just a thought has your consultant not considered removing your prostate as it has not spread? robotic surgery has very good results. 

it must hard not being able to talk to your wife ,maybe when you feel the time is right ask your wife how she is feeling and what her fears are about the cancer.  it is a time when you need to talk as a couple like you have never talked before, my hubby is not good at talking to others but he talks openly to me.   

It is good that you have found this group, so much knowledge and experience here.

My husband made no real changes to his diet, we just eat a healthy balanced diet, food is a big part of your life making so many adjustments can be extra stressful, on the other hand alcohol was dramatically reduced to about 2 units a week max. he does not smoke.

Exercise is good, sometimes the more you do the better you feel but there will be days when you may just feel too exhausted just go with how you are feeling.

take care 

jools

 

 

User
Posted 09 April 2017 19:17:50(UTC)

T3b threatening towards T4 probably ruled out surgery

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


User
Posted 13 April 2017 21:40:05(UTC)
Hi sussexman.

I can't really help with the choice of treatment, my OH has had surgery, then salvage RT. He was diagnosed aged 57.

We are the opposite way round. He doesn't want to discuss it at all. I want to know everything. In the early days, I spent a lot of time talking to people on this forum, and filtered information through to the OH when I thought it was important. Occasionally I lost my rag with him and told him he was being selfish. It's got better as time has gone on.

Good luck for your treatment plan.
L
User
Posted 21 June 2017 11:01:39(UTC)
I was diagnosed 2.5 years ago as T3a, Gleason 9. I was started on a 2 year course of Triptorelin straight away, followed by HD Brachy and several weeks of Radio therapy. I completed my Triptorelin course on 30th October last year. I had a really bad time with the hormone treatment and although things are improving slightly, I'm still struggling. In addition to nerve damage I've also been diagnosed with radiation cystitis. My wife has taken it bad but talking has helped both of us greatly.
User
Posted 21 June 2017 18:23:38(UTC)

Hi I was Dx 2011

with 4+5 T3b still here 

see profile

Regards 

Barry

 
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