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Wife of newly diagnosed husband

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Prostate Cancer
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Posted 6/6/2014 9:44 PM (GMT 0)
My husband has just recently been diagnosed with stage 4 prostate cancer. This has been a real shock to both of us!! We spent Jan.-April down south in our motorhome and the last month my husband, Tim, had begun to complain about increased frequency of going to the bathroom and a pressure when he did go. After a week of trying to get him to see a doctor, he finally relented and ended up with a UTI and antibiotics. That took away the pressure, but not the constant problem of using the bathroom. We came home in mid April with the problem still happening to him. I called our local urologist's office and they got him in that same day. Long story short, DRE revealed a concerned doctor who told us we would begin a whirlwind of tests, blood work, scans, and a biopsy. The results were stage 4 adenocarcinoma, T3N1Mx. PSA was 89.14. They immediately started him on casodex and tamsulosin. The one good thing is that the bone scan showed no definite evidence of metastatic disease (I think it is a positive thing!!) CT scan showed marked retroperitoneal and pelvic lymphadenopathy. The biopsy revealed a Gleason score of 5+5 in all 14 vials and the seminal vesicles contained a Gleason score of 9 (5+4). There is also a bladder obstruction. Our urologist suggested we go to Mayo Clinic for a discussion with one of the urologists out there to talk about the possibility of doing a radical prostatectomy with extended lymph node dissection.

We went to Mayo last week and met with the doctor (in fact, more than one doctor) who also discussed with us removal of the bladder in addition to the prostatectomy. However, he wanted to do a cystectomy in the afternoon to look at the tumor in the bladder which he did. Because he wasn't quite sure of what the growth was he wants to do a biopsy of the bladder. Tim is on aspirin and a blood thinner which has pushed the procedure out to June 18th. (in addition to other doctor appointments at home) We are driving out to Minnesota for the procedure (called a TUR, I think).

It has been a whirlwind and I hope this explanation has made sense. His PSA has dropped to 5.5 as of last week, which we are happy about. We keep looking for those bits of positive news!! Tim is coping as best as he can with the turn life has taken. I have a question for those of you with much more experience and knowledge. When does a medical oncologist come into the picture? Our GP told us yesterday he would get in touch with an oncologist at Mayo. Do we do that before the urologist does the bladder biopsy or do we wait and discuss it with the urologist as a part of his treatment? Comments would sure be welcome!!

I have become a better educated partner reading this forum from all your comments and knowledge. Thank you all. Hopefully, I have made sense in this post.
Posted 6/6/2014 11:20 PM (GMT 0)
Welcome to HW Sally and sorry that you find yourself here. The Mayo Clinic might answer your question regarding an Oncologist. My Urologist continues to follow my PSA and give me Eligard shots and casodex, however I have seen a Medical Oncologist and she wanted to start me on Zometa, but I have chosen to wait on that until my HT fails one time. Travel safely and others will chime in soon.
Michael
Posted 6/7/2014 12:48 AM (GMT 0)
Sally,

Sorry you had to find us....hope we can help. That is a whole lot to handle as the situation is serious. Fortunately you are in a good place and there are many effective treatments to make our disease manageable for a long time. Most important now is for both of you to strengthen yourselves mentally and physically.

Great to see the PSA plummet. Hopefully, the hormone therapy may be all that is needed. If more is needed there are some great options and many people on this board can help.

Best wishes,

Jack
Posted 6/7/2014 1:21 AM (GMT 0)
Hi Sally,

Welcome to HealingWell, and I too am sorry you have to be here. Your post made perfect sense; you catch on fast.

A drop in PSA from 89 to 5 is a huge piece of good news. I'm with Jack, we can be hopeful that hormone therapy will be all the treatment he needs. He sure seems to be reacting well to it.

As for the bladder issues, there are people here who are more knowledgeable than I am on that. I'm sure you'll be hearing from them. Meanwhile, hang in there. You're doing all the right things and so far Tim is responding well. This is a serious cancer, but I think there's cause to be optimistic.

Please let us know how he makes out with the biopsy.

Best,

Jonathan
Posted 6/7/2014 2:08 AM (GMT 0)
Hello Sally! I can't answer any of your questions but wanted to know I am here for you. My fiancée was diagnosed last month and its been surreal ever since. He goes to the urologist again next Friday so maybe then we will have a direction, and a start of therapy for him.

The drop in PSA is a great thing, too! Mayo Clinic is amazing btw.

If you ever need support, I am here for you and there are several other caring ladies on here too.
Posted 6/7/2014 2:43 AM (GMT 0)
Welcome to HW, sorry you need to be talking to us.

It's shock for sure to suddenly having to deal with this. Glad you got hooked up with Mayo. That's an impressive drop in PSA - a hopeful sign. You should be talking to an Oncologist that specializes in PC now. At G10 you'll want to throw everything you can at it. The key now is to get a good medical team behind you. Likely you'll need to have a few different specialties working for you - make sure you trust them and that they'll work together.

Sounds you two are in for a round of testing and fact gathering. That can be difficult - waiting for results and not really knowing which way to go. Get as much information as you can and get second opinions on everything you can. I won't speculate on treatment other than the HT since you still need to find out what's up with the bladder.

A clear bone scan along with the drop in PSA are good things. If the PC is confined to the prostate bed, it will be easier to treat and gives you one or two more options.

I know it must look bleak at times, but hang in there. You never know what the tests might turn up or disprove. You two still have reason to hope for a positive treatment plan and many more trips in your motorhome.

We're here most days to ask questions or just vent if you need to.
Andrew
Posted 6/7/2014 3:24 AM (GMT 0)
Sally,

Welcome to the forum. Glad you found us but sorry you have reason to need us. I hope we can help.

Its good that he has responded so well to the hormone therapy. That gives you some time to work out a plan with your doctors. If you can get an appointment to see the medical oncologist before the bladder biopsy I don't see a reason to wait. There is plenty to talk about.

We do have a number of really knowledgeable guys here on the forum who can help you work out which doctors you should consult and what you should ask them. But while we wait, I thought I'd say hello.

How old is your husband, by the way? If you said I missed it. Some treatments work better for younger guys, some for the guys with a few more years on them.
Posted 6/7/2014 5:09 AM (GMT 0)

MustangSally52 said...


We went to Mayo last week and met with the doctor (in fact, more than one doctor) who also discussed with us removal of the bladder in addition to the prostatectomy.

This is the same thing they wanted to do to my husband since the tumor was invading his bladder.

Please, please get a 2nd opinion or even a third from an oncologist who specializes in prostate cancer.

We sought out Dr. Scholz in Marina del Rey just 11 days before the scheduled surgery. his first statement to us was "Please tell me that you are not going through with that surgery."

That visit was a life changer for us. My husband had the same symptoms as yours initially. After a few months of hormone therapy, the tumor shrunk away from his bladder. He still gets up once or twice at night, but at least he can empty his bladder now.

After the tumor shrunk, he was a candidate for radiation.

His last PSA test, which was this week is still at <.015!

We are so thankful we sought other opinions. My husband is quite fond of his bladder and his completely happy to still be attached to it. :)

Kukukajoo,
Sorry for the delay in getting back to you and shipping the books. It's been a hectic week! Hopefully we can talk this weekend and find out which books you need so there is no duplication between JNF and me.
Posted 6/7/2014 5:14 AM (GMT 0)
We are here for you. Some positive signs such as lower PSA are great.
Posted 6/7/2014 1:31 PM (GMT 0)
Thanks, everyone!! PeterDisAbelard, Tim is 64. I also forgot to mention that he had firmagon shots last month and he starts Lupron this coming Thursday. I will call on Monday about oncologists at Mayo. Any recommendations for oncologists would be great!! When we had discussed the surgery with the doctor at Mayo he was not in a hurry to do it. He originally wanted us back in 3 months for more tests and then go from there. However, that was before the need for a biopsy of his bladder. This waiting is the tough part!! Ladies, thanks for your posts, too. It is nice to hear the woman's thoughts. I appreciate everyone's kindness!!
Posted 6/7/2014 10:32 PM (GMT 0)
Hi Sally....Finding out that a loved one has cancer is never easy and you have to be the strong one to help him fight this. My husband had his prostate removed 14 months ago. If you have any questions, feel free to ask. Have faith that you and him will get through this together and be able to move on with your lives.
Posted 6/8/2014 1:35 AM (GMT 0)
Gleason 10. You hit it as hard as you can with everything available to you..Yes, talk to a Medical Oncologist and a Radiation Oncologist. After the ADT reduces the cancer to a manageable level, a full pelvic radiation treatment might clean up the whole thing, including the bladder involvement. Removing his bladder involves MAJOR quality of life issues which you might be able to avoid.
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