Bone mets and no Recommendes treatment

Im looking for thoughts on bone mets for my husband. In 2006 diagnosed with PSA of 69.5 at age 49. Final Gleason after a radical surgery was 9/10. Post surgical PSA rose to .06 six months after surgery and they did 45 rounds of radiation to the pelvic region with Lupron. For the next five years or so PSA running at .01 with absolutely no fluctuation. Approximately 2011 PSA rose to .02 very slow rise up and down for the next few years. Never surpassing 1.50. In 2014 A mets was found in his clavicle with PSA still below 2. They radiated clavicle which Helped pain. Did not start any medication as his PSA still has remained @ 5 or below and fluctuates. After his last scan this month, he now has mets to pelvic region spine and ribs. Albeit small lesions. Clavicle has remained stable. With Mets to spine and rib the most recent, at same time his PSA dropped 2.6. Very confusing. He is in constant pain and has developed new symptoms urinating every hour at night, extreme fatigue, some loss of appetite, and a 20 pound weight loss. He did have a elective surgery in dec seemed to go downhill from there. His oncologist is relatively new to us about a year and a half. We discussed his going out on disability at this point because he is simply exhausted all the time. His doctors response which I found quite bizarre, was that he had no idea and did not believe that his symptoms were related to his bone metastases. Quite perplexing. When asked what he should do about the mets to the spine didn't have any answer. He said perhaps lupron but if you're tired now that will only make you more tired. Not crazy about this new doctor but now I'm even less so. He offered us no answers no treatment options and basically said he had no idea why he had those symptoms. He is also showing a string of cysts around his liver and in his kidneys. there was uptake to the parietal and zygomatic bones as well. Again no response from his onc on this. I'm really, really disturbed and not sure if we should find another onc or just assume that his condition is not as serious as it appears to me. Any thoughts in this would be much appreciated. Everyone in this site seems to know more than the doctors.

30 Replies

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  • Seriously consider changing doctors. Seems like your husband should be on Lupron. Xofigo might help with the bone pain. If he doesn't respond to Lupron, many docs would consider Zytiga or Xtandi. Also, earlier use of chemo is showing some promise. I hope your husband (and you) find some relief.

  • Exactly what Yost said,

    I wish you the best

  • I entirely agree with Yost and Dan. Your husband should consider a new doctor and be put on Androgen Deprivation Therapy (ADT) and possibly chemotherapy.

    If you live in the U.S., here is a link to the National Cancer Institute's list of "designated cancer centers where specialists with research experience are found:

    cancer.gov/research/nci-rol...

    If you post information about where you live, someone in this group may be able to recommend a good doctor in your area.'

    Best of luck.

    Alan

  • Thank you all. We are near manhattan and actually his hospital is on the list. All his Doctors have been exceptional....until his oncologist left a year and a half ago. But all 3 of you have convinced me he needs a new dr. Hard for him as everyone else that has treated him for 10 years is there. But I feel this doctor either just doesn't care or doesn't know what he's doing. Appreciate the support and advice. I really needed to hear it from someone else and hope that he'll agree.

  • I agree with what Yost, Dan and Alan said. Find a new doctor. I'm being treated at the MD Anderson Cancer Center in South Jersey-2 hours from you. There are several MD Anderson throughout the country, with the main one in Houston. What each MD Anderson Center does is confer with the home office so they know the type of treatment you're in. This added a peace of mind to me. You might want to try a bigger cancer center like this. Please keep us posted- Nick

  • Thank you. Had no idea MD Anderson had satellites throughout. Thought they were only in Houston. He's really upset right now and saying he's done. Trying to give him time to process this.

  • Wait, his hospital is on the list of NCI-designated cancer centers? May I ask which hospital? Maybe you can post on this site to see if there's another med onc at your hospital who provides quality care. Some time ago, I had a couple of PCPs who didn't meet my standards. I managed to get some insider info, & picked a PCP who is even better than the PCP of my dreams at that point.

    I agree with everyone who replied to you & said his cancer needs to be treated. You could also ask his PCP whether any of his symptoms could be caused by an unrelated problem that might be worthy of evaluation.

    Your husband may be under tremendous stress from his health situations plus still being employed. Disability retirement or some type of retirement, if possible, might really help. Does he know how to have fun, at least before his current medical problems & symptoms? I was advised to retire at 64, even though I still enjoyed my job, in order to reduce my stress hormones, & to have more fun (live music, travel, etc.) in order to increase my pleasure hormones. 11 years later (longer than I was expected to live, & I'm not done yet), I think it was a brilliant idea.

  • I want to add one thing. Once you have a better med onc, please consider registering a complaint about the current one, with the hospital & probably also with the medical board (or whatever the state agency is called where you are).

  • Excellent advice. That's what we were assuming with this visit...it's time for disability. But this dr made it seem like there's nothing wrong with him. His work days with travel are 12 hours days. Way too much for him. He actually asked to see chair of Dept who used to see him before bone meta. He may be able to Recommened another onc who's prostat cancer dedicate. I'm. Not sure his current is. His last was and she had Bennett researching pc for 20 years

  • Yeah, that's way too much. Even before I retired, I arranged for a less stressful assignment. You definitely want someone who is a PCa expert. Best of luck.

  • If it was me, I would change Doctors. And I agree with Yost. Aggressive treatment may be needed for such a young man.

  • I have no help for the tiredness, but in my case where the cancer has spread to bones, lungs, and liver the solution seems to be for now, ADT (Lupron) along with chemotherapy (Taxotere and Carboplatin) and prednisone. I am up every hour and a half at night urinating, feel fatigued, and have a bad taste in the mouth. All of these I do not like, but the alternative was much worse. I will soon walk my son down the aisle (slowly), play with my grandchildren, hug my children and wife; no complaints. Hopefully, a magic bullet will come along to help us before it is too late but for now your husband should try to enjoy life.

  • Glad you are really living life and he now needs to do that. But needs his dr suppprt which he is not getting.

  • PS: I read your later blog and want to tell you that I am at Memorial Sloan Kettering Cancer Center (MSKCC) in Manhattan and since you are in the area you may want to consider consulting with them.

  • Are you with dr scher? I understand he is very good. Hope you are getting good results. He had a bad first experience at Sloan. But that was surgeon and I believe he should try them again.

  • My oncologist is Dr. Michael Morris, he does not do surgery. I have also heard good things, from other patients in the waiting room, about Drs. Scher and Slovin who also practice at the MSK urology center.

  • Michael Morris sounds familiar also...I'll have my husband check him out. Thank you.

  • As has been noted he should be on Lupron and a secondary hormone treatment like Zytiga and starting a 6 round Taxotere as per the Chaarter trials. Please find a competent medical oncologist.

    Good luck

    Ron

  • You need a very competent Oncologist, or a team, where they do Oncology, Nutritional Supplementation, ET, AL. I would have shot your oncologist if it were me. I highly recommend, Sloan Memorial Hospital in Manhattan. You can visit their Web Site, and narrow your search for an Oncologist who's 'clinical interest' is prostate cancer. hopefully one who is an integrative Oncologist.

    We have a number of men on this site that go to Sloan Memorial. I suggest you Start a new Blog Post---Title it: Looking for Recommendations for Pca Oncologists at Sloan Memorial.

    I am appalled, that bone mets are not being treated--we do not want spread to soft tissue, such as lungs or liver. Start a search ASAP. If still having trouble--call the PCRI, get an advocate, who can intercede for you.

    Nalakrats

  • We thought for sure he was going to start something after it was found in spine. They treated his very first lesion with radiation. Now that there are at least 4 we assumed that was next step. Ty

  • Your husbands history sounds similar to my husbands ..he started with the fx clavicle ..then the kidney cyst .liver cyst and a tumor blocked his ureter too ..they radiated it vs a nephrostomy tube ..then the mets spread ..fentanyl and oxy helped ..last and final treatment was xofigo injection ..after a pain flare of unbearable pain for 3 days ..the pain was better ..we deceased the drugs but it took its toll on his blood .my husband died 6 months ago ...there is something new found everyday ..we loved our Drs nurses and kind care we received ...everyday was a gift

  • I'm am so so sorry you've lost your husband to this terrible disease. Wow comparisons are very real. Why cysts around liver kidney if you know? He gave us no answers. I pray for everyone on this site for something new. The suffering that these men go through....and although many do live many years after dx, they suffer from the disease and the effects of treatment. I wish you well in recovering from your loss....❤

  • Prostate cancer can make cyst anywhere .my husband also developed a tumor in this jaw line ..a biopsy indicated it was prostate cancer ..the doc was surprised .they sent this info into the geo study but no trials or chemo meds were found ..keep fighting

  • Hormone therapy and chemo can cause even more problems. Since your husband's symptoms aren't typical, perhaps there is a problem unrelated to the cancer. Perhaps you should see a doctor who is not an oncologist. Also, you suggested the elective surgery might be related, but gave no details about that.

  • As explained to me thirteen years ago, not all oncologists are equal. Your husband should be treated by a Medical Oncologist that specializes in Prostate Cancer; not one who is general or handled other dancers. I found one from academia who is a Prostate and Kidney researcher to treat my Stage 4 PCa. Well versed in cutting edge treatment........

    I also avoided stellar teaching and treatment facilities where "cattle call" rules...... I may see a "student" twice a year, but only with the lead. During chemo, I wa assigned to a MD who was learning the trade of Geniurologic Cancer to take my calls 24 hrs a day, if need be, who saw me first each week for six months, then the lead always came in and together we discussed what was going on....

    Our relationship is simple, whichever facility he goes to, I go also. I have been most fortunate.

    Keep kicking the bastard,

    Gourd Dancer

  • I think that may be the problem. He's had an excellent team for 10 years. Then his onc who did specialize in pc left. And I believe you may have nailed it..,,thinking he's a general onc with no pc experience.

  • Get a new doctor. Too important to have someone like that!

    You might consider Xofigo -- which is an injectable radiation that goes after diffuse bone mets (big and small/undetectable). We did that for my husband. He only made it through 4 of 6 treatments but it seems to have worked. His scans stable 1+ years.

    Retirement is a good idea if you can do it. Note -- Stage IV Prostate Cancer (which he has with distant mets) is a qualifying condition for Social Security disability. If he has Social Security, he should be eligible and with little hassle. We're convinced that retiring has kept my husband a lot healthier for the past 1-1/2 years. Talk to your accountant and financial advisor, but if you have IRAs, you should also be able to withdraw without penalties (taxes you still have to pay if not a ROTH).

    Get a new doctor.

    Also see if you can consult with an expert at a major cancer center. Check your insurance -- it's usually covered. UCSF - California, MD Anderson-Texas, Dana Farber-Boston, Johns Hopkins-MD, many others. This has been a nice reassurance for us as we go through stuff. Our insurance is keen that it's a consult and any tests are ordered here -- seems reasonable.

    Good luck finding a new doctor.

  • Good to hear and very good advice. I've been after him for a year or Two to go out. He finally is considering it and gets little to no sport. Thank u for good practical info. It's also one of his concerns. He doesn't need the stress of worrying about work and with travel his day isn12'hiurs. I think, as a cancer survivor myself that he has done an incredible job working for 10!years with awful disease and the last 2,5 with bone mets. We initially checked out John Hopkins 10' years ago. Our ins would have covered. But his Surgeon here was on dr Walsh's team at Hopkins so he knew he had one of the best surgeons.

  • i feel a second opinion is in order

  • I concur with the others here suggesting a new doctor. Low PSA doesn't mean that the cancer isn't aggressive -- it obviously is, and needs aggressive treatment. I'm very surprised that he wasn't immediately put on ADT when his PSA doubled and redoubled. My PSA was 2.7 when I was diagnosed with aggressive (gleason 8) cancer. Good luck, I know this is a stressful situation.

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