My 65 year old husband was diagnosed December 20, 2017 via biopsy. 11cores were obtained; one was 40% and ten were between 60-80% cancerous. Gleason is 5+4=9 and PSA is 34 so he has high risk PCa. Due to bureaucratic hoop jumping with both Medicare and private Medicare Advantage, he hasn’t had scans yet. The abdominal CT scan and the PET bone scan happen this Wednesday, February 21. The first medical oncologist visit is Monday, February 26.
I’ve been immersing myself in both literature and discussion boards and have learned a lot. We’ve also attended support groups. What I haven’t heard yet is how other existing illnesses affect treatment options and outcomes. He’s been hypertensive and on multi meds for almost 30 years. He was diagnosed with Type 2 diabetes a few years ago. He had 3 episodes of congestive heart failure requiring week long hospitalization between 2014-16. He does not have congestive heart failure in progress; rather as cardiologist explained, these were discrete episodes.
As a result, he’s been followed by an endocrinologist for two years. His probable diagnosis is hyperaldosteronism, an adrenal gland hormone issue that can cause all of his other problems. He is casual about his medications running out and is non-compliant with lifestyle changes like diet adjustments and exercise. He’s about 50 pounds overweight. You can imagine that this has caused me no end of frustration and anxiety. I do recognize that I can’t force him to do better.
Now for PCa. We have his endocrinology records for the first oncologist appointment. The scan reports should be ready too. My questions are: anything else we should have for that appointment and what questions should we be asking? Also, does anyone else have experience with having co-morbidities at the time of PCa diagnosis? How does that affect your treatment?
Thank you all for your sharing. It’s immensely helpful. Gung hay fat choy! That’s Happy Chinese New Year to all of you! May the Year of the Golden Dog bring you much improved health and happiness. Mary
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Because of his heart condition he may not be able to have a RP or chemo....but all the other good drugs..lupron...zytiga...xtandi + radiation should be available
As a result of my concern with some systolic hypertension, I noted that elevated BP can be a side effect of Zytiga and Xtandi; don’t know about Lupron— am I reading this incorrectly?
I would just be really open about his list of current medications and conditions, and ask about any drug interactions or possible side effects/adverse events with whatever treatment(s) may be offered. Otherwise,....
This link contains lots of "food for thought" for initial meetings with various prostate cancer doctors, including some lists of possible "questions to ask". You might pick and choose from something like this and add individual questions of your own, based on his unique situation and personal history.
You might also ask the doctor if it's OK to record some parts of the conversation, perhaps with an app on a cell phone if you have one, for your own future review purposes. This would be a good time to ask for your own personal copies of the various scan Radiology Reports, too, for your own files.
Showing the doctor some photos of your family or things you love & hope to do in life can often be helpful, too. (You will be less likely to be defaulted to being just some patient number, or a set of numbers or images in your reports, files, and on your diagnostic imagery.)
Thanks, Charles. I’ve checked out the link and it’s got me thinking. I have an iPhone. Is there an app you recommend? Someone on another board suggested having our own copies of records and I’ve been gathering those.
I think he can have practically all the treatments. I believe surgery may no be indicated because cancer is already very superficial (If I understood correctly 90% of 10 cores were + for cancer) indicating a cancer close to the capsule. We have to way to see what the scans show. If possible a PET/CT scan should be done to see extension of the disease.
He qill probably be treated with castration therapy with lupron or similar and they will have to do changes to his meds for all the problems he has. He needs a good medical team of oncologist, endocrinologist and internist.
Thanks, Raul. All 10 cores were positive for cancer with the percent of each core being cancerous ranging from 40-80%. He has a great endocrinologist who isn’t affiliated with the cancer center but I know she’ll contribute what she can. We fired his internist who failed to tell him his PSA was 9 in July 2016.That alone should have warranted a urologist consult. This same internist ordered some routine blood tests in November and snuck in a PSA without telling my husband. That came back at 34 which finally got the Doctor to tell Paul and advise a urologist visit. The cancer had been growing for 18 months without treatment because the internist goofed.
I have Hypertension, a-Fib, Kidney disease, Diabetes, and Pca. I lost 100 lbs. 45 lbs to go; I am taking Lupron, Zytiga, and prednisone. I avoid red meat, dairy, and sugar. I eat whole grains, fruit, and veggies. I only tell the following to give you hope: I am in my 20th year in fighting the beast. Get a good medical team, read all you can about the disease.
Wow! That’s so encouraging, Rich. I hope I can convince my husband to get on this board and talking to someone like you. As he’s feeling now, he’s “staring death in the face.” So far he seems resistant to educating himself. I’d say he’s been depressed for sometime but I’m not sure that he would agree.
Gung Hay Fat Choy! Your husband has some very agressive disease that will no doubt require some complex treatment. I suggest you seek a Genitourinary Medical Onclolgist (Specializes in Prostate Cancer). You can find them in various Centers of Excellence such as UCSF, UCLA, MD Anderson, Mayo, Memorial Sloan etc. There are a few in private practice as well. Your husband will need to be followed carefully so it behooves you to find a good Oncologist that you trust and feel comfortable working with. This might not be the closest one to you. Mine is 2,500 miles away, but he looks out for me.
Thank you for your reply. We live in San Diego County and I’ve convinced him to see a genitourinary medical oncologist at UCSD/Moores Cancer Center. She seems young but her training is outstanding - Harvard Medical School and Fellow at Johns Hopkins. We’re meeting her in a week.
Thank you! The local support group told us about the Marina Del Rey group and I’m reading a book by them. My hope is that Paul will get a 2nd opinion from them or maybe USC/Keck. Scripps has just reorganized and has a new cancer center opening this Summer. They are no longer partnered with the proton center and have a new director from MD Andersen. It’s some sort of joint program. It sounds good but I’m wondering about the learning curve for any new venture. I know the doctors and research have great experience. My concern is more about administration and communication in a new partnership. Still, it’s a good close option.
The PCa literature on the effect of body mass index [BMI] on PCa survival is quite large at this point. Being "50 pounds overweight" is the comorbidity that stands out to me.
The problem with excess visceral fat, is that it is hormonally active, & in a way that favors PCa progression.
As a diabetic, he no doubt knows to limit his carbs.
A Medierranean-style diet (40% fat) may help with weight loss.
Is he using Metformin for diabetes? A daily intake of 2,000 mg (4 pills) may have survival advantage.
BigRich would be be able to offer better advice than I could.
It was approved by the FDA in 2016 for "prostate ablation" (ie zap the tumor) ... but they didn't come right out and accept it as prostate cancer treatment. The doctors (including my urologist, who didn't approve of it) keep saying that they need ten years of results. I think they've been saying that for ten years and will be saying it ten years from now. There isn't enthusiasm from the urologists who are invested in conventional surgery, and the radiation oncologists who have big investments in radiation equipment. HIFU has been practiced for over 20 years now outside the US, with tens of thousands of men treated. I opted for it for its claims of reduced quality of life side effects due to its precision. It is past the 'clinical trial' stage, just like RP surgery and radiation are past clinical trials.
I'm very impressed with the research that you are doing. I think that if I were giving advice to your husband, the first thing I'd say is, Listen to your wife!
I don't know the answer to the comorbidities question. One problem we face is that doctors tend to be so specialized that they don't know enough about unrelated conditions and unrelated drugs. It's so difficult to keep on top of the constant stream of new information about their own specialties that they don't spend much time looking at other things. One way to deal with that is to do your own research by checking drug labels for anything the oncologist prescribes. See for example: accessdata.fda.gov/scripts/....
If you find a drug (not always easy because each drug can have many versions), click the "Labels for" link, choose the PDF, and look at the document. Pay special attention to (or search for) "Drug interactions", "Contraindications", "Warnings", "Precautions", "Information for Patients", etc.
Your husband's endocrinologist probably knows a lot about hormone therapy, the most common first treatment for advanced prostate cancer, and may be able to provide information about potential drug interactions.
As far as what treatment to try, I don't know. The standard curative treatments - surgery, radiation, maybe cryotherapy and HIFU, don't have a great track record with very high risk cancer. Typically these cancers have already spread outside the prostate and the chance of getting all of the cancer is significantly lower than for low and intermediate risk cancer. However, that does not mean that your husband will necessarily die of the disease. It is possible that one of the curative treatments will work or, if not work, than at least help. There is a lot of debate right now in the medical profession about how to treat high risk cancer and whether to "de-bulk" cancers that have already spread outside the prostate. It is also possible that the medical treatments, which have improved enormously in just the last few years, will keep him alive for a long time, perhaps long enough to live into old age and/or get still newer treatments in the next decade that might cure him. There are men in this group who are still alive and symptom free 10, 12, and more years in spite of very high risk disease diagnoses.
In the meantime, he will do himself a favor by losing weight, exercising, and eating a balanced diet. It won't just contribute to slowing his cancer growth. It will enable him to better tolerate the side effects of the drugs he will probably have to take and will also help him with all of his ailments and make him feel better overall. But I know that I don't have to tell you that. Tell him I said it. :>)
Thank you, Alan. He and I have known each other since 1977. I suffer from no delusions that he’ll listen to me about lifestyle changes. My way around that in the past has been having our son talk to him. I’m not talking about any sneaky manipulation. Our boy who is about to turn 28 is very loving and direct with his Dad. During the hospitalizations in the past, K has been blunt with his Dad about diet and exercise. His Dad seemed to hear him-at least for awhile. Then it’s back to old habits. If K has no luck, I’ll recruit you, ok? I think your first advice is spot-on! (Wink wink)
Your husband and I are not that different. When I was diagnosed 3 months ago with stage 4 metastatic, I was 5’9” and weighed 235 lbs, I was on high BP meds, and I was borderline diabetic. I was also the center of the party at the grill or smoker on weekend afternoons.
But I want to live. I now eat a plant based diet, weigh 200, and my PSA is 0.14. It hasn’t been easy or fun, but I have no pain and believe the future is bright. And despite the lack of sex, my marriage has never been better. My wife is my everything, including the one who tells me to get on that rowing machine even when the fatigue is overwhelming.
You can get through this. Every day you think about living rather than dying is a day that you beat this disease. And it is so much easier if you do it together.
Thank you, Canoe. That makes me hopeful. May I ask what your treatment has been? And your age? My husband is 65 and with his Gleason 9, not a candidate for surgery-not that he wants that. He has several friends who recently had the RP and they’re all struggling.
Age 67, Gleason 8, still working. Getting Firmagon, casodex, xgeva and prednisone. Pretty standard stuff. Have also finished 4 of 6 docetaxel infusions. Not fun. Plan to start Zytiga when chemo is done. I’m also getting a second opinion in a few weeks, not because my treatments aren’t working, but to see if there are some other ideas that might be helpful. Getting informed, keeping an open mind and asking questions are usually likely to result in better treatment
18 months into this monster, the first 6 months were the worst as you think about meeting your maker and leaving your loved ones, second 6 months went around and got all my affairs in order, Doctor put me on Effexor for my hot flash’s but it also helped my mood. Then out of the blue a friend gave me a pocket dog. She is a wonderful distraction, moved the monster of my mortality way back on my list of worries. 😀😀😀
I echo Raul's comments. You need a team that communicates. For example, my Cardiologists manages my healthcare, not my Primary Physician. The Cardologist talks with my Medical Oncologist and Orthopedic Surgeons. And because if that they are in the same page. Imagine one bring in the Texas Medical Center, one 40 miles to the West and the other 49 mikes to the North. Zero connections as Physicians, yet, they talk. Even when I had a Radiation Oncologist 200 miles to the West, they talk.
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Update- new treatment plan and a sprinkle of hope 
DEXA Scan - how often?
Why is oncologist not concerned about liver lesion?
Oncologist said dad has 1-2 years left 
