Need Advice Quickly Post 6 weeks lab report .

[Benshelper]

Hello everyone, Sorry we are all having to be in a group as this but I really am seeking advice about my husband. He is 56 yrs old and was just operated on by robot in Nashville Tn 6 weeks ago. We were told his cancer was contained and should not have any problems. Soon after they called to say they found some in lymph nodes which were also removed. Now he just had his six weeks check, PSA is now a .45 indicating they explained cancer still showing present. The dr is advising come back in 3 months and one week before coming back have a PSA done again locally, we live about 100 miles from Nashville. He also mentioned having bone scans done then. Here is what I am asking. Isn't 3 months a long time to be waiting? He had a gleason of 7 before the surgery and a quickly rising PSA before surgery, we don't want to wait around if this is very aggressive. We have never faced this before, should we contact a local oncologist? go to our local Internist , they said something about you have to wait to see anything on the bone scans? It wouldn't show anything now? We were made to wait 3 months from the initial diagnosis to the actual surgery date to remove the prostate and were assured oh there is no harm in waiting, obviously that wasn't right or it would not have escaped right? Im sorry for so many questions but I need someone to tell us should we call back up there to Nashville and say NO we want to do something now or is this normal to make you wait 3 more months? Thanks for any inputs and God bless to each of you.

[Hidden]

Hi Benshelper,

First thing, just relax. I think it may sound bad, but it appears Ben caught it early enough to control it. Don't go crazy dwelling on numbers, just yet. If my uro told me I had a .45 psa, I'd be ecstatic. I hang out around 5. Currently, as of 5/13, at 8.85. But, I'll be getting an ADT shot next month. Which should bring it down.

I'd like to hear more about Ben's process. Did they know prior to surgery there was lymph node involvement? They wouldn't do surgery on me because of lymph involvement. Is there radiation being done? And, bone scans don't mean much right now, if it's contained to the prostate and nodes. Has anyone suggested ADT treatment? Did they remove the prostate?

If you hang out here, you'll find a lot of help and info.

Good Luck, Joe

[cfrees1]

welcome to the forum. I am right with you and our paths are pretty similar. I knew right from the start that my lymph nodes were involved but have similar feelings about wanting to move quickly. My urologist also did a post-surgical exam and then said "come back in three months". I asked if perhaps we should get the ADT treatment started and he agreed and gave me a shot of Lupron right on the spot. So I think the idea of waiting 3 months is pretty common as they are looking to see what happens with his PSA, but given that it's already above a 0.2, which I believe is considered surgical failure, I'm surprised that his doctor didn't suggest getting on a testosterone deprivation therapy in the meantime. From your doctor's standpoint, there probably won't be immediate metastasis and 3 months isn't significant probably, but I do know how you feel.

I think it's important to recognize a few things. My PSA was 99, post-surgical Gleason score was 9 and I also had cancer in my regional lymph nodes and positive margins and yet, based on my Decipher test, I have a 41% chance of metastasis in 5 years, and a 20% mortality risk in 10 years. So, your husband is looking at years of treatment even under the most unfavorable conditions and is very likely to do much better than the worse case. A few months here at the beginning may seem like along wait, but if he gets a shot of Lupron, that will slow the growth of the cancer.

Are they considering adjuvant radiation after he recovers? I'm starting 39 radiation treatments in early July.

[Dr_WHO]

Hello and sorry for you being part of this group. I am 58 and had surgery on April18 of this year and will get my six week PSA soon. I had to wait three months for the surgery - even though they knew via CT that it was in my lymph nodes. Did you get the results from the pathology report? You have the right for a hard copy. If you do not have it, please request it. The report should tell you the status of the prostate, how many lymph nodes were removed, how many where positive for cancer and how advanced. You could then take this data to both an urologist and oncologist for a review. Also, what other tests did your husband have? Did he have a CT or bone scan before the surgery? Also, I was told that sometimes it takes months and months for the PSA to go down.

My pathology report was an eye opener. I have a rare form of ductal prostate cancer that effects about 0.4% of the cases. It is very agressive but does not raise your PSA (Gleason 8, Stage IV, T3N1, ductal, clean margins, 1 of 14 lymph nodes positive but where the lymph node was totally replaced by cancer.) Was told before the surgery that the SOP is to wait three months after your first post PSA for the follow up. They stated that normally they want to wait until then for treatment. The rational is not to let the treatment hide the cancer. However, since my case is unusual, they are stepping that up.

I can not give you the names of any doctors to review your case, but I am sure that some members iPod this group could list them. Please know that you thoughts and prayers are with you.

[Hidden]

Hi Benshelper,

I went thru a similar scenario starting in December 2008 with recurrent PSA after surgery, then 38 rounds of IMRT along with one year of Lupron. The PSA was undetectable until it starting rising in 2011 at which time I went on ADT4 (Lupron, Casodex, Avodart and Cabergoline. My Testosterone and PSA went undetectable and I am still on continuous ADT4 plus I have added 500 mg of Metformin daily. I strongly suggest that you read the the papers that Chuck Maack has written over the last 30 years of his Journey with this disease. See his observations at

theprostateadvocate.com/obs...

Good luck,

Clint

[Papillon2 in reply to Hidden]

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[Beauxman]

I had a similar PSA level after surgery. My docs said next step would be radiation, but wanted to give me time to heal and regain urinary control, first. They said that whatever the incontinence status is at start of radiation treatment, it generally stops getting better once the radiation treatment begins.

[Beauxman]

Cancer was detected in lymph nodes after surgery, but not before, most likely because the detection technique (dissection versus scans) was different, not because cancer had escaped from the prostate during that time.

[Gultch]

Excellent advice from previous comments . I might add one more thought as you go through this difficult phase. Find a Cancer advocacy/support group locally (within reasonable driving distance). Use them to get information, support, perhaps a local medical oncologist to work with you. Fear of the unknown can paralyze us, knowledge gives us strength and hope. I am a 5 + year survivor of stage IV metastatic PCa. By following similar advice as those who replied above and my own advice here, I believe you can weather this storm. Do not look at this as a death sentence - rather; look at it as a chronic illness that with good medical care and continually advancing therapies, today's cancer patients are living longer and having a better quality of life. Peace.

[RandyT]

The same thing happens to many of us. It's very likely they will start him on radiation treatments. They will zap the whole area and hopefully they will get it. They have to wait for him to heal from the surgery first. It doesn't hurt. He just lays on a bed and the machine goes around him. You're only in there for five minuets or so a day. Monday thru Friday. For about four weeks. Only about an hour there then he can go to work or whatever. Good luck. Sorry for the bad news. Randy

[maack1]

The expected PSA following successful surgical removal of the prostate gland is <(less than) 0.03ng/ml since PSA production primarily in the prostate has been removed. Your husband's 0.45ng/ml PSA post-surgical removal does indicate the continued presence of prostate cancel activity. Since imaging prior to surgery already identified lymph node activity as well as pathology report of cancer cell activity in one or more remove lymph nodes, this is likely the continued location of activity. If this activity was known prior to surgical removal, I would have expected external beam radiation as the choice of treatment that includes the prostatic bed and its periphery (adjacent lymph nodes) rather than surgery since it was known of this cancer presence that was outside the prostate gland. With the level of PSA that continues higher than expected with surgical removal of the prostate gland as well as lymph nodes and seminal vesicles, if imaging is unable to identify metastasis elsewhere, it is likely external beam radiation to the prostatic bed and its periphery will be recommended and followed by six months to a year of androgen deprivation therapy (shutting down of testosterone production (primary fuel to prostate cancer cell growth) as well as blocking with an anti-androgen the route of testosterone (aka "androgen") to cancer cells. Explained here: Recurring Prostate Cancer: tinyurl.com/krfq9pa

[boc13]

Hi, 9 years ago my husband was diagnosed from a psa of 70. He was 49 and it was aggressive. Had radial surgery. Nodes were not positive, but his final gleason was a 9/10. his post surgical psa was .03. He was told athat time, that psa is not "steady" after surgery. You have to wait a few months to see where it goes up or down. As well as what someone else here said...they don't want treatment to mask what's really going on. 6 months later his psa had more than doubled. They decided at that time the right course of treatment was Lupron (I think it was 3 injections) and radiation (45 treatments) and might zap whatever was left. His psa remained steady at .01 for about 4 years. It very, very slowly started to rise in his 4th or 5th post surgical year. He has now been diagnosed with bone mets. Only one lesion in his clavicle. He has refused further treatment right now. It has been nine years. He realizes as his psa continues to rise he has to have treatment. He is still working, uses his weekends to rest, and tries to participate as much as he can in normal activies. Take a deep breath. THis can be a managed illness. Don't rush on any decisions. And from what I understand waiting 3 months is the norm. I wish you both the best.

[Magnus1964]

100 miles is long way. If you went there just for the surgery than get a local urologist. I had my surgery at Johns Hopkins which is about 90 miles away. Since then I use local doctors. By the way, don't sweat .45 PSA. I wish mine were that low.

[tomhawk88]

Took about 2 years for bone scan to show after my PSA started rising. 3 months is the spacing of my appoint!ents. I was Gleason 9 with lymph node involvement.

[erjlg3]

It's terrifying Mrs. Benshelper. Keep asking questions. Get every doctors report lab report scan etc and start a folder. Take a copy with you everywhere. There is also a ladiesprostateforum.com that you may love also. You're both in my prayers. Oh. ..... my husband gets labs every month. It took a few doctors before that happened. Best wishes.

Jackie

[Shepard]

I was told that it was typical to register a PSA of greater than zero after surgery and that was the case for me. I was told not to react until a reading at six months. In my case, the measure increased to 1.1. That was an indication that the cancer was present and growing in my body. At the time of surgery I was classified as Stage 3 so it was not totally unexpected to find that the PSA would increase. IMRT treatments did not lower the PSA so I went to hormone therapy. Now PSA is less than one, but greater than zero after two years of Lupron. My reading is that generally the cancer is slow growing so you have some time to judge what is going on. For me, I wish I had not taken the radiation treatments. Sadly the outcome is not 100 percent predictable. Hormone therapy is effective, but the side effects are life altering. Weighing the impact of various therapies is important and sadly my Doctors were and continue to not be concerned with the effects on daily living. Their focus is on the lab numbers. Good news is that the therapies following surgery failure extend life and that life can still have value. Rejoice in each other.

[Wrgatewood]

I'm sorry you and your husband are going through this. I am in nearly the same situation as your husband. I had my procedure in March and was told to wait 90 days as well. The explanation I received from two doctors is that PC moves slowly. It takes time for the PSA to rise and fall. It's not an immediate thing. It is hard to wait, I know. I am waiting on my first check up. I pray your husband and I have a great result.

[Benshelper in reply to Wrgatewood]

I pray your results are good also, thank you.

[Hidden]

Suggest you find a medical oncologist who specializes in prostate cancer to determine appropriate follow up as to timing and whether it should be broad band radiation to the pelvic region and/or hormone deprivation

[Ihurwitz]

I think it should be treated quickly and aggressively. Get to a oncologist or another Uro Opinion and I would think at least get started on ADT to get the Ca under control and bring down the PSA. Good luck.

[Hidden]

Hi

My suggestions are below and please keep in mind I am not a medical expert only a patient.

First I would get a second reading of his pathology done by Dr.Epstein at Johns Hopkins or similar specialist.

Second I would consult with both medical and radiation oncologists who specializes in prostate cancer. Did your husband go to Vanderbilt University medical center? If so they should have these specialists available. If not I would go to a major cancer center that has a speciality in prostate cancer for a consultation.

Third do some research on C-11 Choline and C-11 Acetate Pet/ CT scan. Mayo Clinic in Rochester, MN does the C-11 Choline and several places do the C-11 Acetate but see this website for the place in Arizona phxmi.com. These scans are much more sensitive and may be able to locate where the reoccurance is located and possibly can can treated directly with radiation to the exact spot.

Fourth please get some books on prostate cancer and read up on this disease. It is important you and your husband understand as much as you can about this disease. Do not place too much reliance on advice provided in internet sites. Most posters (including me) are not medically trained but merely relating there own experiences. Also do not take any doctor's advice on face value. You need to make sure you are getting treatment advice that is right for your situation. Understand all the side effects of any additional treatment.

Finally the 3 month wait seems long to me, but is fairly standard. Keep in mind it is the Psa trend and doubling time that you want to track.

I hope this helps. I do not post much on this site and I have not included my history in my profile. I was dx'd in 2005 at age 49.

Bill Manning

[JoelT]

This has been an interesting string. Basically, Chuck's general recommendations should be followed as your husband's PSA does show that he still has active prostate cancer in his body. My only additional is that I would not wait to start the hormone therapy until after the start of the radiation. Hormone therapy does attenuate the effectiveness of radiation, so earlier therapy will begin to control the cancer now and assist the radiation therapy when he does start it.

Have you obtained the post surgical pathology report? If not get it and share it with us. Instead of a second opinion on the biopsy pathology that has been suggested, I would arrange for a second reading of the post surgical pathology. This is much more important and will give us more valuable information.

A local oncologist is a good idea as long as the oncologist specializes in prostate cancer. General oncologists do not have the same expertise and experience od specialists that will foster better outcomes.

Joel

[BobChanin]

Please go to Vanderbilt. I will be glad to talk to you about my experience

there. Bob Chanin

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615-879-2935