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Welcome! New Member Dana Johnson -- Worried about husband.

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Posted 10/3/2013 8:13 PM (GMT 0)
I found a new member's first post on an existing thread. Her nom-de-forum is Dana Johnson. I am starting this thread for her so folks can say hello.

She said...
Hello everyone. I'm a newbie and looking for support/information. My husband, Jeff, is 53 yrs old. Diagnosed in 2010 and had radical prostatectomy done, May 2010.

This week he went for 6 month check up and his PSA has gone from .5 in April to 1.6. Dr's office called house and left message that they would be mailing info to us to contact another Dr. and he will be starting chemo.

I don't know anything other than that now - I've called Dr office and asked for his nurse to call me so I can get more info.

I do not remember what his gleason was prior to surgery. I guess I was naive in hoping that the surgery would take this all away.

I'm scared - but hoping I am overreacting. Jeff is doing well. He was very strong for me last night - he knows how I worry. But I know he's scared. He's still dealing with side effects of surgery (ED, Urination problems).

Just looking for suggestions - what to expect, what to ask, etc.

Thanks for your time.
Dana Johnson

Posted 10/3/2013 8:14 PM (GMT 0)
Welcome to the forum, Dana. Sorry you need to be here but glad you found us.

First thing, don't panic. His situation is almost certainly less dire than you are imagining. Lots of guys have a recurrence after surgery and, in most cases, it can be fixed up with a bit more treatment. Once we know a bit more we can tell you more.

Second thing, are you sure his doctor said "chemo"? That'd be somewhere is the vicinity of weird for a man whose only previous treatment was a prostatectomy. My guess is that he wants your husband to start on hormone therapy and that the other doctor he wants him to see is either a radiation oncologist or maybe a medical oncologist.

The usual treatment for a man who has a recurrence after a couple of years is radiation (to get whatever small amount of cancer might have been missed) plus hormones (to make the cancer more sensitive to the radiation.)

Chemotherapy is usually reserved for treating men for whom hormone therapy has stopped working.

But, anyway, welcome to the club. The smart guys will be along any minute with a million questions. They will want to know about your husband's post-operative pathology report -- what was his Gleason score, the size of the tumor, did he have positive margins, ... stuff like that. You might want to ask your husband if he knows that stuff, or have him give his surgeon a call to get it. You could also find out what drug his doctor wants him to start on. (My guess is it's bicalutamide (Casodex) and/or Lupron (hormone therapy drugs).

Post Edited (PeterDisAbelard.) : 10/3/2013 2:29:04 PM (GMT-6)

Posted 10/3/2013 8:40 PM (GMT 0)
I'm sorry about the bad news, but that IS bad news. There is clearly a recurrence underway. I'm sure there will be some good advice coming your way here. The only thing I would suggest is that perhaps you need a new doctor, or several. The previous PSA of .5 is already above the threshold at which salvage therapies are typically instituted, and waiting six months for another test seems much too casual an approach. And I don't know about going straight to chemo at this point, I would think radiation and/or hormone therapy would come first, but that's just my impression, I'm no doctor. You and hubby have a battle on your hands, and I think you need more help than you're getting so far.
Posted 10/3/2013 8:51 PM (GMT 0)
Dana, I'm one of the Healing Well prostate cancer forum wives and wanted to chime in.

As Peter DisAbelard has said, we have alot of questions (and I bet you do as well). You mention that your husband had surgery in 2010...do you by any chance have a copy of his surgical pathology report or any information on what was found (Gleason score, % involvement, any mention of positive margins, invasion of seminal vesicles, etc.). All of this would help you and your husband in the decision-making process.

If the doctor clearly mentioned chemo, then your husband's situation was found to be more advanced, whether from a high Gleason score, invasions of surrounding tissues including lymph nodes, etc.

While surgery often "takes care" of the cancer, there are many men who need additional therapy after surgery. Usually, it's radiation to zap the cancer cells left behind in the prostate bed. However, if there's evidence that the cancer may be more widespread (has moved out of the immediate area of the prostate), radiation would likely do nothing other than possibly add to your husband's side effects. The next step is usually one of the hormone treatments to "starve" the cancer cells of their "food" thus causing them to die off.

Did your husband's PSA ever become undetectable (anything below 0.1)? You mention that his PSA is now at 1.6, up from 0.5...what was it before the 0.5? Anything at or above 0.1 can be an indication that the primary treatment (in your husband's case, surgery) did not do the job.

I hope you see our posts and come back and let us know how things are going. If you have questions, ask. If you need to vent, come here and scream if that's what you need to do. There are a good number of wives on this forum, many of them with husbands still fighting their prostate cancer. We're here if you need us.
Posted 10/3/2013 8:53 PM (GMT 0)
Thank you both. I will know more in a few weeks and you can believe I will be coming back here for support. I hope to have his Gleason score by tomorrow.

I'm not positive about anything, other than what the NURSE told Jeff on phone when she called to tell him results of his blood work. She did tell him Chemo - but I thought that was a bit radical without knowing any more than we do.

What a relief to have found this forum and to be able to discuss some of this with people who have been thru it and can answer so many of our questions. God Bless you all. I'll come back once I have more info - or more questions.

Thanks again.
Posted 10/3/2013 9:01 PM (GMT 0)
His psa started out at 0, and has slowly climbed. 1 yr ago, it was 0.3, then 6 months later has gone up to 0.5, and now, 6 months later again, jumped to 1.6.

Is that number high considering he has already had surgery? (1.6)

Could the Dr know this is more dire by just doing the blood test (PSA) ?

I would think they need to do something else before they know where it has spread.

I'm so scared.... please keep us in your prayers.
Posted 10/3/2013 9:56 PM (GMT 0)
Hi Dana,
There are quite a few wives here who are trying to help their reticent or ostrich (as in burying their heads in the sand) husbands. There seems to be a protocol that is followed for most after surgery, as Stephie said. She is a good one to follow for advice here.
My husband had adjuvant radiation after his surgery, meaning that the doctors knew that his statistics put him in a high risk category and would treat him more aggressively than some. Adjuvant is usually administered within three months of the surgery. There is also salvage radiation which is given if the doctor suspects that the cancer is still localized in the prostate bed and hasn't spread but the PSA shows that something is going on.
If my husband has a recurrence, the first line of offence would be hormone therapy. That takes the PSA down for some years, a few or many depending on the person. After that, there are many conventional and new treatments that are added. Chemotherapy often follows the hormone therapy. My husband is in a study to see if hormone therapy plus chemo is beneficial before the surgery, but he is in the arm that went straight to surgery.
I think the best thing to do is find the best prostate cancer centre closest to you and take their advice. Find a teaching hospital or University research center. There are people from all over the world here, and I'm sure someone can advise you as to where you should go. Don't settle for a local urologist who hasn't got the experience or knowledge to deal with a recurrence.
Posted 10/3/2013 11:54 PM (GMT 0)
Hello Dana and welcome. As the others said, the immediate referral to "chemo" seems a bit odd but of course we don't know the full story.

However, here is what I would recommend at this time. YOU should look to find an excellent medical oncologist who is expert in prostate cancer to help manage your husband's case. I'm not saying that your doc's referral won't be good but you and hubby need to get assertive at this point because it certainly looks like the cancer has returned. There are plenty of ways of managing a cancer that has returned after surgery but it's best if a prostate oncologist is involved. If you will let us know your location and whether or not you are willing to travel, I'm sure some of our members could weigh in with suggestions.

Good luck, stay with us and we will help you get thru this.

Jim
Posted 10/4/2013 12:03 AM (GMT 0)
Welcome, Dana. To HW Prostate Cancer.

Looks like you are getting some good advice already, not much I can add to it.

Try not to loose your cool, your edge, your nerve, there are answers and solutions out there
for your husband.

We are here for you, anytime you wish, or if you need to vent, vent away.

David in SC
Posted 10/4/2013 12:27 AM (GMT 0)
We are 20 miles west of Winston Salem NC

we could not travel at this time - unless it comes to that, of course.

open to suggestions, thanks for your time.
Posted 10/4/2013 1:30 AM (GMT 0)
Dana, in answer to your question about PSA after surgery: keep in mind that the goal of surgery is to remove the cancer which, in theory, also removes the source of PSA. While minute levels of PSA are manufactured in the male body, they are too "small" to be detected through a PSA test. The fact that your husband had detectable PSA one year ago (0.3), and the fact that it has continued indicates that there are still cancer cells in his body. The trick now is to determine whether those cells are still confined to the prostate bed, in which case radiation may just do the trick. If they have escaped the area, radiation will accomplish nothing and hormone therapy will likely be his next step.

I'm concerned that the doctor didn't react to your husband's first detectable PSA (0.3) and that the doctor waited 6 months for a retest. Usually, the next test would be 30 days later followed by another test at 30 days. Once you have 3 consecutive rises in PSA (which your husband has had), secondary treatment should be initiated.

So, the answer to your question as to whether a PSA of 1.6 is high after surgery, the short answer is yes since the hope is that there is no detectable PSA after the prostate is removed. Your other question about whether the PSA test would tell the doctor whether your husband's situation is dire: the answer is "no". The actual PSA reading gives the doctor some idea of what he's dealing with but is not predictive of the extent of the disease. I agree with Tudpock's suggestion: find a good medical oncologist who deals with prostate cancer and he or she will guide you through the next steps.

I can feel your fear in your posts, and the best advice I can give you right now is to breath. I know it's easier said than done but try not to worry (too much). Get your husband's surgical records from the urologist (including the surgical pathology report and his PSA history) and get an appointment as soon as possible with a medical oncologist. I'm sure once you meet with the oncologist, many of your questions will be answered and you'll feel more in control of the situation.
Posted 10/4/2013 2:27 AM (GMT 0)
Dana,

One of our members has seen Dr. Ronald Davis at Wake Forest Baptist Medical Center. He is a medical oncologist and should be a short drive for you. (You said twenty miles west of Winston Salem... Yadkinville, maybe?)

I see Dr William R Berry at the Cancer Centers of North Carolina in Raleigh. That would be a longer drive for you but still not too bad. He is a very sympathetic and knowledgeable doctor who is himself a prostate cancer survivor.
Posted 10/8/2013 8:11 PM (GMT 0)
Thought I would check in real quick. No changes as far as what we know. I did find the pathology report from his initial diagnosis.

Gleason was 7 (3+4)

Has appt on 10/23 to see radiation oncologist. Is 2 weeks too long to wait for this appt? We will both have lost our sanity by the time this date gets here. I pray I am overreacting and making this much worse than it will be.

This is from the Pathology report:

The tumor involves 25-30% of the right lobe. Definite tumor was not seen in left lobe
Gleason pattern 4 - carcinoma was sometimes seen at capsular margin of right lobe for up to 4-5 mm

Of course there is a lot more on these 4 pieces of paper but I dont know what to put here.

Please continue to keep us in your prayers.
Posted 10/8/2013 8:25 PM (GMT 0)
Dana, first of all two weeks will probably not make a big difference but if you are unhappy with that wait then you should be assertive and try to get something sooner.

I also can refer you back to two earlier posts. Sephie raised some concerns about your doctor's delay in seeking additional treatment. I echo that and feel that you should have been referred for additional treatment earlier especially given the comments about capsular margin. So, I question the effectiveness of this doctor and I would question any of his/her referrals given what I think was an inappropriate delay in treatment (of course I am not a doc so take what I say as strictly my personal lay opinion).

PeterDA spoke of Wake Forest Baptist Medical Center. That place is first rate and I would recommend you strongly consider it. Also, Raleigh is not that far -- especially for a consult with an excellent doctor. You might want to consider PeterDA's referral on that.

The bottom line is not to panic but to have some sense of urgency and to seek out the best possible medical attention you can find. You and hubby will need to be assertive and take control at this point.

Please let us know what you do.

Jim
Posted 10/8/2013 8:29 PM (GMT 0)
Welcome Dana. I'm sorry your family is going through this. There are a lot of very intelligent, compassionate people here who can give you plenty (as they have above) of ideas.

Praying for you now.
Posted 10/8/2013 8:32 PM (GMT 0)
Dana,

Do you see anything about the "Surgical Margins" on the report? We'd like to know about that part. Also, any paragraph that has the words "stain" or "inked" in it.

Two weeks isn't too long to wait if you can keep your head from exploding but there is some urgency and sooner is better. Often men will start hormone therapy while they are waiting to see the radiation oncologist. I'm a little surprised that they haven't talked about that with your husband. I rather expected to hear that when the nurse said "chemo" she meant "hormones".

I'd still like for him to find a medical oncologist who does prostate cancer. You might call Wake Forest Baptist and ask who they recommend.
Posted 10/8/2013 9:06 PM (GMT 0)
Resection Margins: Involved. Gleasons pattern 4 carcinoma was sometimes seen at the capsualar margin of the right lobe, for a distance up to 4-5 mm


Seminal Vesical Involvement - not demonstrated
extracapsular extension - present right lobe
invasion of adjacent organs - not demonstrated
angiolymphatic invasion - not seen
total notes examined - 1 left pelvic


I hear what you are saying about baptist hospital. I'm concerned about our Insurance. i will start calling BC/BS and see if we have any options, and try to find a medical oncologist for prostate cancer.

This site is a blessing. At least I can ask you questions and you all are doing a good job at calming my nerves.

Jeff went to his regular MD yesterday, asking for something for his nerves. His Dr. told him "there's no need to panic" and gave him Ambien to help him sleep. He came home so pissed off.... just wanted a few xanax for this knot in his stomach. He didnt say anything to his MD... I'm gonna have to teach that man a thing or two... ;)

Thanks everyone....
Posted 10/8/2013 10:13 PM (GMT 0)
I went to Dr Hemal at Wake Forest Baptist for a second opinion before my surgery. I forget what insurance I had at the time but they paid for it. I currently have BC/BS NC and they pay for me to see Dr Berry (at CCNC in Raleigh) without complaint. I would expect they would pay for you to see someone at Wake Forest Baptist. You could call WFB and ask them whether they work with BCBS NC. I'll bet they do.
Posted 10/8/2013 10:57 PM (GMT 0)
Dana, just catching up on your husband's story and saw that you posted some info about his surgical pathology report. The extracapsular extension is a bit worrisome as is the positive capsular margin. I imagine that your husband's final stage was a t3a...that information should be shown on the report as well.

Tudpock said what I was thinking: I'm not sure that I would trust the opinion of a doctor who let a PSA rise "slide by". If I may suggest: listen to Tud and Peter DA, and get an appointment with a medical oncologist specializing in prostate cancer. Hopefully your insurance will cooperate.

Come back when you can and let us know how things are going. You and your husband will be in many thoughts and prayers.
Posted 10/8/2013 11:36 PM (GMT 0)
Dana,
It sounds like your husband went to see his primary doctor by himself???? If that's the case, I would not let that happen again, but that's me. I also took a recorder and when we each had a different answer to a question we replayed the visit to understand more clearly. NO doctor, well rather, no good doctor would question you recording your visit. Ambien to sleep..didn't work for me to husband, the Xanax made a huge difference, just takes the "edge" off so you can relax, and sleep if necessary, and sometimes sleep is a good thing. It's such an emotional roller coaster between these visits and I am a reader from Dr. Patrick Walsh's book to the Internet, this website and many others. For me I didn't want any surprises, on the other hand, my husband, just said tell me what I NEED to know and above all, never lie to me or keep anything you know to be the truth from me. We practiced that from the beginning to the end, July 5, 2013.
Just know everyone here has different advise, no one is always right and they all mean well with every statement. We listen without judgement, although, as happy as I get when I hear someone is is remission, I also ask why not my Jim. I get upset when people say dont over react, OMG! My husband cancer was very aggressive from the beginning and they kept telling us how rare it was...but I do know they see to be coming up with lots of new drugs and ways to use them these days...surround yourself and husband with love and ask to be surrounded by white healing light..and talk talk talk.
Blessings...LuAn
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