Hello Everyone! I am new here too!

I found this forum a few months back, and found the posts informative, the stories/reports/updates both sad and comforting even feeling happy for those who have progressed!
My reason for joining you, is that I hope you will be able to help me with my husband's journey with prostate cancer.
He had a psa reading of 5.5 was referred to a urologist, underwent a prostate biopsy which showed T2c however a Gleason 8.
That seems "contradictory" to this naive writer! I have since done more reading. He had had full bone scans, mri's, ct's and last week a needle biopsy on L3, the results are not yet fully revealed, but would suggest a non related plasmacytoma.
The Urologist is recommending, at this stage radiation therapy on the prostate and dismissed my concerns at the likely side effects of the treatment.
My dearly beloved is 67, healthy, active and at the moment does not seem to be too willing to look/read the information I have downloaded on treatment options and side effects and life changing effects.
We have been together for 47 years, working together for 30 years, and I love him to bits! I will be with him every step of the way, not intruding, but caring and supportive and only want the best possible outcome for him, so he may continue to enjoy his sports and his love of life. Any thoughts, suggestions on how to do this and his future would be greatly appreciated!
Cheers!

Hi Cajun Jeff!
Many thanks for the welcome and reply! I am afraid, I did not make myself clear, sorry! I am hoping for "guidance" on the approach to subtly get my husband to become more interested in forms of treatment, side effects, treatment options, being comfortable in talking about it, telling his male siblings and sons etc.
We are opposites! I will talk, research, air my fears, explore options etc., Husband is the opposite!

I guess at the moment, the whole diagnosis etc. and ramifcations (sp?) are sinking in, but I do not want him to become withdrawn and depressed! At the same time, I do not want to be a "nagging fish wife" !!

So, if anyone has been in a similar situation, pointers on how to be supportive without being annoying etc. is what I am seeking!
Thanks!

Welcome to HW, sorry you need to be here.

First, RT is a very good option in your husband's case. The side effects are no worse than surgery. Yes, the thought of radiation is scary, but having been through it myself, I can say the fear was much worse than what happened.

One of the facts about PC is that it is a a very large emotional shock to learn you have cancer. Some of us respond by going numb and being unable to deal with it. Depression is a normal result and many of us have struggled with it. How to be supportive? Tough question, hopeful some of the other ladies who've been there will jump in and give better words.

All you can really to is to be there. Be ready for when he is ready to talk. PC touches one of the most basic things of manhood - to loose that or face the possibility to face serious chances there is not something all of us are willing to talk about, even with our wives. I am sure the conversation is going on in his head - someday he might be able to talk.

I'll tell a little story: While doing my radiation treatments, I met a number of other men with PC and we'd talk from time to time. Many had done their research and knew they were doing the right thing. Some were just following doctor's advice. A couple of guys were driven to the daily treatments by their wives, most of us went on our own in the early days and asked for support later as the treatments began to wear us down. There is one man who sticks in my mind, Joe. I asked him why he picked RT. Joe's reply was, "I don't know. My wife does all that research. She said it was the thing to do and she knows more about it than me."

Hang in there, it's a strange road you'll have to follow. Normal will change but you can get through,
Andrew

Welcome waggles,

I have the same situation that you do. My husband goes to a doctor and blindly follows whatever the doctor advises him to do. He was badly hurt by doing this before his PCa diagnosis, so I had to step in and get involved in his medical care.

My husband is a smart, Ivy League educated guy, so I do not understand why he does not have more medical curiosity. When my husband was diagnosed with PCa I found healing well and did a lot of internet research. My husband's position was that he would not take medical advice from strangers on the internet. We ended up somewhere in the middle, which is probably a good place.

My husband was treated with surgery about 2 years ago. At this point I go with him to a lot of his medical appointments and he relies on me to take notes and do research. I keep track of his medical instructions from doctors and then he just asks me what he is supposed to do. He says that he has so much on his mind from his job that my involvement makes it easier for him. I think that PCa and the side effects from his treatment are upsetting to him, so he avoids focusing on it too much.

I made sure that my husband was treated by excellent doctors, so if he wants to blindly follow their advice, he is being led by some of the best doctors in the country for PCa.

I know that I cannot change my husband in this way. So I try to fill in where he needs help. He does not want to talk about PCa issues very much. So I do research on my own, and then just communicate to him what I think is important.

Waggles

Welcome and sorry you have to be here. This forum is great for information needed to make these hard decisions.

Your husbands stats are similar to mine. I went with IMRT radiation and ADT and am completely pleased so far.
Side effect for me were very minimal.

Be sure to see one or two Radiation Oncologists and maybe get a Medical Oncologist involved. Multiple opinions help you make your best decision.

We are all here for you.

Hi waggles,

There's nothing contradictory in those findings, however the cancer is not staged by the biopsy. T2c means the doctor felt lumps on both sides of the prostate or he saw them there on MRI or US. If he felt or saw nothing, he is stage T1c.

Did you get his Gleason score confirmed by Bostwick or Epstein - a valuable next step?

Some doctors don't like to recommend surgery for any high risk men (Gleason 8 is high risk). Many surgeons disagree as long as the cancer seems to be well contained (which is hard to know with certainty). At any rate, getting another opinion may make your decision harder, but better-informed.

There are also several radiation approaches to the problem, including IGRT/IMRT, IMRT with a brachy boost, and now even SBRT. You have to talk to specialists in each to understand those options. The radiation decision is further complicated by deciding whether and for how long hormone therapy should be used with it, and whether whole-pelvic radiation ought to be used.

As my mentor Tall Allen just said, even for advanced cases, SBRT is an option if the disease is locally advanced with no distant bone metastesis.

An hour or so ago I completed session 3 of 5 SBRT radiaiton treatments. They are generally given Mon-Wed-Fri-Mon-Wed and you are gone, but for other reasons Dr Chris King at UCLA my Radiation oncologist appproved me doing Mon-Fri - Mon - Fri - Monday and I will be done with no side effects so far 3/5 of the way completed.

This SBRT treatment for high Gleasons as far as I know is only being done by Dr King at UCLA, by a group of doctors in Toronto or by Dr Allen Latz in NY State.

I aksed Dr King jsut a few minutes ago and he confirmed that anything that can be done with 7-9 week IMRT radiation daily, he can do as well in only 2 weeks with SBRT every other day.

That was a major factor in my treatment decision, along with my extreme confidence in Tall Allen as a mentor.

LuprponJim

Thank You All!!!! I was very grateful and humbled to wake this morning and read all your words of comfort, support and encouragement! Thank You!

Yes, I am the "bill payer, researcher, worrier, problem solver"!!!! I had all the treatment options with us yesterday, having read them all thoroughly before seeing specialist. My husband had only glanced at them.

I was hoping against hope that he would recommend "active watch" due to my "ignorance", he will be sending us back to the medical oncologist for onward referrals.

After 15 years of annual testing on MALT lymphoma in bowel, he was told in August that there was no need for anymore testing of that as negative results had been in place for over a decade!

Just had a call from the Urologist, the plasmacytoma results are being "re - examined" by several pathologists due to "the most unusual findings"? Husband is now required to go and have immediate blood and urine samples to give some more clarity to situation!!!

I thank you All again, I now know where to come to share my fears and concerns in relation to "the boss" a nickname he has, as when we worked together, there can only be "one" boss!!!! Cheers!!!