What can I do to help from here?

ConcernedNiece

Hi All, I live in Ireland, but am very close to my uncle who lives in New York, When out there on vacation 3 years ago (exactly) he told me he'd been diagnosed with PC, but that he was told they would keep an eye on it and probably something else would get him before this would.
He sent me a St Patricks Day card which arrived last Friday, telling me his PSA levels had gone from 1.5 - 29. He has had bloods done, bone scans & a biopsy, but had no results on the 12th when he sent the card.
I rang and he told me they took 12 samples and all 12 showed 80% cancer cells, but that it has not spread outside the prostate. He is going for Radium soon. I know he's going to see his Dr on Monday 26th in Sloan Kettering Memorial. I was planning on going out there this year anyway, but this result has made this trip more urgent.
To my knowledge his wife doesn't know about this at all. (They have a strange relationship). His sister (my mother) doesn't know the new results, he said that he'd leave it to me to tell her the bad news. I feel it should be him that tells her? I ain't sure his job knows either, as he intends working through treatment. He's such a secretive individual I'm priviledged to have been told, I know that.
He doesn't want me out there till he's over treatment & healthy, I wonder is this possible with the diagnosis? Cancer is scary when you have support around you, but to try deal with all this alone when his family are here in Ireland. Do I wait for him to invite me out or do I just pick a time and go out there for support. How can I help him from here?? I have started sending letters weekly as I used to, but due to family commitments and hectic lives they had stopped being sent. We did however keep in touch by phone and sicne getting this news last friday (16th) I've rang him twice in the past week, I'm trying to find a balance between support but not hounding him. His birthday is April 2nd so we're sending him out a card from each of us (I have 4 kids). Just looking for advice on what to do from here.....

lewvino

I am sorry to read about
I am sorry to read about your Uncle and wish him the best. I'm sure it is encouraging to him to have such a caring niece.

Offering support from long distance can be by sending him encouraging notes, letters or books from his favorite authors. Also just listening to your uncle will help him.

I agree with you that your uncle should be the one to tell his wife.

I would aslo ask your uncle to share his gleason score. This would be made up of 3 numbers something like 3 + 3 (6) or 4 + 3 (7) or perhaps 4 + 4 (8).

The higher the two numbers on a scall of 1 to 5 will tell the members on the forum how severe the cancer was graded. The higher number the more aggresive the cancer. I would assume the number may be high due to the volume of cancer found in the 12 samples.

You should also tell your uncle about our forum. There are many men that have been down this path before that like to encourage others.

Keep us posted!

lewvino

ConcernedNiece

lewvino said:

I am sorry to read about
I am sorry to read about your Uncle and wish him the best. I'm sure it is encouraging to him to have such a caring niece.

Offering support from long distance can be by sending him encouraging notes, letters or books from his favorite authors. Also just listening to your uncle will help him.

I agree with you that your uncle should be the one to tell his wife.

I would aslo ask your uncle to share his gleason score. This would be made up of 3 numbers something like 3 + 3 (6) or 4 + 3 (7) or perhaps 4 + 4 (8).

The higher the two numbers on a scall of 1 to 5 will tell the members on the forum how severe the cancer was graded. The higher number the more aggresive the cancer. I would assume the number may be high due to the volume of cancer found in the 12 samples.

You should also tell your uncle about our forum. There are many men that have been down this path before that like to encourage others.

Keep us posted!

lewvino

Ok I will try
Well lewvino, I maybe confused things above: As far as I know his wife doesn't know, as anytime he's talking to me on the phone about it, as soon as I hear a noise or her voice in the background he changes topic to something banal or ends the call abruptly. I know he has not told his sister & this is who he told me to "tell the bad news" to, I still think he should be the one to tell her not me.

As regards the Gleason score, I will try gain this information asap. Do you think I should hang back and let him decide when I go out there or should I just pick a date and go out there anyways. I just have a bad feeling about all this and I'm afraid to leave it too late I guess.

I just rang him in work, he sounds in good spirits, but maybe this is a front. He said he'll ring me later - we'll see if he does.

He has not got a computer or the knowledge of how to use one He can get text messages on his phone but can't send them (mind you it's complicated - I think an iPhone would be a great asset to him & easier to use).

Thanks for your advice about how to support him from here, this is a big thing to me and he's such a sap I'm sure he'll appreciate it too. Keep the ideas coming

Will be back when I get the Gleason score.

lewvino

ConcernedNiece said:

Ok I will try
Well lewvino, I maybe confused things above: As far as I know his wife doesn't know, as anytime he's talking to me on the phone about it, as soon as I hear a noise or her voice in the background he changes topic to something banal or ends the call abruptly. I know he has not told his sister & this is who he told me to "tell the bad news" to, I still think he should be the one to tell her not me.

As regards the Gleason score, I will try gain this information asap. Do you think I should hang back and let him decide when I go out there or should I just pick a date and go out there anyways. I just have a bad feeling about all this and I'm afraid to leave it too late I guess.

I just rang him in work, he sounds in good spirits, but maybe this is a front. He said he'll ring me later - we'll see if he does.

He has not got a computer or the knowledge of how to use one He can get text messages on his phone but can't send them (mind you it's complicated - I think an iPhone would be a great asset to him & easier to use).

Thanks for your advice about how to support him from here, this is a big thing to me and he's such a sap I'm sure he'll appreciate it too. Keep the ideas coming

Will be back when I get the Gleason score.

My first impression is to
My first impression is to wait on a visit. I assume he will have some treatment and then I think would be the ideal time to go and help him and his wife with follow up care.

lewvino

ConcernedNiece

lewvino said:

My first impression is to
My first impression is to wait on a visit. I assume he will have some treatment and then I think would be the ideal time to go and help him and his wife with follow up care.

lewvino

Well I still don't have the Gleason score
But he did tell me today that he has been to see the Dr's in Sloan Kettering NYC. Where they did more tests including internal. They discussed the option of Brachytherapy in conjunction with Radium, which would shorten his treatments from 9 weeks to 5 weeks. Whats the results and or side effects from this? I know he will have to cut out any foods or drinks like alcohol, apple juice (acidic) which would agrevate the bladder. I know it has an effect on urination & can have an effect on sex also, but if it means he survives it I don't really mind about these, nor does he.

Will get you the Gleason score though.

ConcernedNiece

News Just in
He is going to see his Dr on Monday 16th April, to see if he is a candidate for the Radium rods, which as I said would shorten treatment from 9 weeks to 5. I will contact him next week to see what was decided. I ring him at least once a week, just to let him know I'm still supporting him even from the other side of the atlantic.