Hi. I'm managing my husband's care and he is encouraging me to compile as much info as possible.
Hubby was dx Gleason 8 and PSA - 30 in 2008; RP 2009; SRT 6/2012 (nadir reached year later). Both showed failure with slowly rising PSA within 6 months of nadirs. Against medical advice he chose to avoid SRT until his PSA rose to 2.0.
After post SRT rise in 2013, oncologist recommended waiting for further treatment because QOL would be affected, but stressed a rising PSA after SRT nadir indicated cancer was systemic.
Scan results last week showed suspicion for cancer of iliac lymph node or nodule with mild focal uptake similar to bone marrow, which increased in conspicuity and uptake from last year's scan. Doc gave option to watch or start aggressive treatment and hubby said doc told him there was "No downside to choosing either option." Hubby opted for recommended Lupron and focal radiation.
(1) Can anyone tell me what "uptake similar to bone marrow" means? (2) When is the start of systemic disease for calculating life expectancy? Is it upon PSA rise after SRT or when there are symptoms or physical proof, such as a scan?
Hi. Thanks Tall-Allen. I will check the SUVmax but all I know it was a recently approved PET/CT with Axumin.
What I should have asked is what is the standard for declaring biochemical recurrence? Is it 1 year or less? Is it from the point the PSA starts to rise first from nadir? Or is it when there is actual evidence to be seen? This study uses one year or less based on "early failure" but doesn't define the criteria: journals.lww.com/amjclinica...
I'm trying to figure out (generally) where he is in his progression so I can best advocate for existing treatment options and stay abreast of new ones along the way. I know there is no way to pinpoint exactly where he is. He has admitted it has all been too much and has asked for me to keep an eye out for the latest news based on his situation. It has always been too scary for him to research the topic.
You know, I didn't add that in because it's a squirrelly PSA. Here are his PSAs going back to give you an idea, starting arbitrarily from 6/14/16 and ending 7/23/18:
Same lab. Squirrelly, like I said, so it's been impossible to track the velocity. Doc said they see this from time to time but no one knows why and hubby was gently advised not to read anything into it. It rose steadily until 12/2014 (two-plus years after radiation) and then 0.29, 0.20, 0.08 then to what I mentioned above, starting at 6/2016. Up until now, it has been a roller coaster ride--his hoping for a cure after every decline--but the scan put a lid on that. He's just overwhelmed.
So is it enough to know it was the Axumin scan to ask question #1 again, about the report indicating "similar to bone marrow" found in the uptake? Do you have any idea if that means there's a hint to the possibility of cancer in his bones? I would think primary tumor cells would only be found in there, not bone marrow. Unless there's a possibility of lymphoma or similar bone disease going on too? It's just a weird statement of finding.
Oh. OK. I'm trying to get that info and the full radiologist report.
The radiologist's quote the doctor sent last week read:
"A subcentimeter left external iliac lymph node or nodule with mild focal uptake, similar to bone marrow, increased in conspicuity and uptake from PET-CT 8/3/2017. "Indeterminate 7-mm right upper lobe pulmonary nodule. Differential considerations include post infectious or inflammatory nodule versus an indolent neoplasm. Recommend pulmonology referral."
Husband says he's not going to see pulmonary doc because oncologist said it's not particularly worrisome as it does not take up the fluciclovine.
Will check back soon when I have the added info. I asked hubby last week to email Doc to answer these questions and get full path report, but he hasn't so far, so that might be a reason for me to let this go. (I'm probably more curious and worked up about this than he is.) The rest of the letter states it's probably cancer showing up because that's how the process evolves but hubby tells me that that doesn't mean the scan found cancer (hmm...!). Doc also wrote there is no way to be certain of undetected sites...
Injection of 10.7 (mCi) of 18F-fluciclovine (axumin), then a multi-bed 3D acquision with low mA CT attenuation correction was performed from upper thigh to skull vertex.
Up-to-date CT equipment and radiation dose reduction techniques were employed. CTDIvol: 3.4 mGy. DLP: 315 mGy-cm.
Blood pool activity (SUVmean): 1.1 g/ml
Bone marrow uptake in L2 vertebral body (SUVmean): 1.9 g/ml
Lots more in Findings, but keeping focus on "Narrative" here. Did mention latest PSA 1.66 ng/mL in July, doubling time 1.6 months. Not sure how they figured the doubling time with his up/down PSA.
Hi. Tall Allen. Does that mean that perhaps with this information he could have chosen not to start ADT because there wasn't enough SUV value to start treatment?
I worry about treatment toxicity of ADT and and radiation again. Radiation seemed like overkill to me and I questioned that, especially because he had a hip replacement in that area and it's so close to his small bowel. His QOL has been good up until this point...the only issue was loss of weight and major stiffness when sitting for more than 1/2 hour, which then takes him time to recover to his regular (albeit less stiff) gait.
You are asking very good questions. I am confused by your post - SUV is NOT in g/ml- it is just a number. And I thought they looked for SUV max, not SUV mean. It is saying that there was slightly elevated uptake in the bone marrow of L2. That's the bone marrow he is comparing the external iliac node uptake to. There is also no mention of the size of the LN from the CT scan. I would talk to the radiologist or, better yet, get another opinion from David Schuster at Emory (he invented Axumin). One of the problem with new scans is that the radiologists don't always have adequate experience at reading them.
Thanks, Tall Allen. I feel I have already used up too much space on this forum so I have tried to pick and choose what information I think might be relevant, especially now with the very long pathology report. I avoided a lot of info in the Findings report, just sticking to the Technique and Impression Sections.
So I now think I have the information you asked for:
"Mild focal uptake is present in a 1 x 0.6 cm left eternal iliac lymph node (IM 219 SUVmax 2.0, previously 1.5) which has increased in conspicuity from 8/2017.
I would think this sounds like a problem but probably somewhat normal since it wasn't mentioned in the Findings: "Intense physiologic uptake present in the liver and pancreas... mild in the spleen and renal parenchyma....salivary glands...Mild nonspecific activity is present in the bowels....Presumed left renal cyst is incompletely characterized."
This is your forum - take up as much space as you like. You can't judge what is important if you don't really know about this stuff. What you just posted makes more sense. So this is his SECOND Axumin scan - he had one last year as well? I suppose the increase in SUV max makes them suspicious that the external iliac node is cancerous even though the value is below a definitive diagnosis. The size is also borderline. I suggest you send both reports to Dr Schuster.
I am doing the same for my husband, for him to be on this blog would be way to much for him. He likes to pretend but I hear him telling friends exactely what we both heard, so I know he knows. Everyone handles news different and how they want to go about things. I want my husband here with Quality of life as long as possible so I will gladely do the research.
Hi, I am a realist and take a pragmatic approach to kicking this bastard of a disease down. First, Tall Allen has given you excellent information; he really is on top of his game.
You husband has received excellent care based on his wants and needs. He opted for palliative treatment preserving as much QOL as possible. But he never had a real shot at cure. His path is typical and most followed. Keep the disease at bay hoping to die from other reasons rather than Prostate Cancer. This is very possible with research finding new silver bullets to add to a Medical Oncologist’s arsenal.
In the last two years he essentially has had six undetectable PSAs with three PSAs as detectable. As his Oncologist has suggested, this is typical in the onset systemic disease. I suspect with future scans that he will soon have an “official” diagnosis of metastatic disease. How this happens can be explained as micro-metastasis. It’s a good topic to discuss with your Oncologist. The simplified explanation is unseen cancer cells travel through the lymphatic and vascular systems, like a highway, looking for a place to land and multiple. (This explains why in my case, it did not matter which primary treatment I had for my PSA 6.8 and Gleason 7(4+3) initial diagnosis, it was too late - as cancer cells had already escaped the prostate capsule on initial diagnosis. Within a year I had mets to T-3 and L-2 of my spine. This was over 14 years ago.)
There is no sense in worry, panic nor fear. As you are intimately involved in his treatment plan, the both of you should attend appointments together. Some do this; some do not. You might want to re-visit what the Oncologist meant by aggressive treatment and weigh options. No one can give you a guarantee. Even the experts disagree. Yet, if your person recommends with treatment plan A, then I would give credence to his recommendation. This is his professional training and experience speaking.
Never second guess the path taken as it is the best path for you and your family at a certain point in time. Stay positive.
Who am I? Just a guy who could not accept palliative treatment and went for a cure with very aggressive treatment in a research trial in 2004. We will see down the road on how it turns out. I have been most fortunate in that I was able to stop all drugs for PCa in February 2010. I remain undetectable.
I was fortunate to being at the right place at the right time. However, I asked both of my Radiation Oncologist the same question after they told me that anyone could give me Lupron, etc. “Doc, I have a question for you. If you were in my shoes, what would you do?” After thinking fir a minute, the first one said, “ I would find the best Medical Oncologist that specialized in Metastatic Prostate Cancer; not just any Oncologist. Not one that treats Breast, Lung Cancers, etc. preferably one in research.” Follow up question, “ Do you know one?” His reply was no. (This from a Private Practice)
The next week I asked the other Radiation Oncologist (Academia Research) the same question. His response was the same, however, he added, “I sit on a committee with one, but I don’t know if I can get you in. I’ll call him.”
About two hours later, I got a telephone call at home. The doctor has already seen your scans and he wants to see you tomorrow. After almost two hours meeting with him, I enrolled. Again I was most fortunate and asked, what I think is the the right questions. Most important was a referral from a treating Phyiscian.
The research Medical Oncologist is also a Professor at a major medical school. Unfortunately, he is no longer in clinic due to an illness and spends his time in research and lecture. Besides his class at the medical school, he also travels worldwide giving seminars. I know that he is in Japan next month.
If I had to search without a referral, I would research the staff at medical schools paying attention specialities, interests, and research; then I hope that I qualify. Seek out trials, you may or may not qualify. And, it may take time, but I would keep searching.
Thank you for your time and detailed explanation. Most appreciated !
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Hi. Thanks for your thoughtful reply. I am a realist also. My initial post was written to be brief, to be less intrusive on the ones who live this disease. But there is always more to the story and I hesitated to spend much time here. To save time, the last paragraph directly addresses the clinical trial subject.
I can tell you that when an oncologist doc gave us the initial news, My husband asked for 3 months to research options. Doc said no, you can't wait that long. He also wanted to do Brachytherapy and was told no, not with a Gleason 8/PSA 30. It was a crazy, confusing meeting but finally my husband bargained the doc down to 1 month, but he was warned time was a ticking and not in his favor.
As the days went by, he burned up the telephone wires calling anyone who had cancer, a concern because he never once asked their Gleason score, PSA or staging. On Week 3, I asked where he was in his research and he said he was in contact with a doctor who uses Hifu and had decided to fly to Canada to be treated. I reviewed the information and shared that their fine print noted relative success on Gleason 6 and less and nothing on more aggressive forms. Finally, it became apparent what his main concern was: ED. A doctor friend of a concerned friend called him and got him to change course. He told him, "We can fix ED but not death."
Back on board, he was told he was eligible for a clinical trial with aggressive treatment. He asked my brother, a physician, to join us during the visit to discuss the trial. Upon conclusion, he asked for his advice and my brother told him if it were him, he wouldn't give it a second thought: he'd choose the trial. A few days later, my husband declined to participate. I believe his choices from that point on still had something to do with ED, including later stalling when additional treatment was recommended. He eventually reached total ED after SRT. Eventually he opted for a penile implant.
As for waiting 3 months to make a decision, the data show that even for high risk men, men who waited more than 3 months had no difference in outcomes from men who did it in less:
You just gave the best reason to NOT talk to a medical oncologist when the cancer is still localized. MOs have no experience with curative treatment - they chemically manage men who live with the disease. I think a brachytherapy boost therapy would have been ideal and might have spared his erectile function, but that is water under the bridge.
ED was my primary concern as well, which is why I did not consider surgery for very long. Judging by my live support groups, incontinence and ED are the biggest concerns among men. Wives (and surgeons and MOs) often take a "just cut it out" attitude, no matter what the cost to QOL. It's very understandable because most wives don't want to risk losing their husbands. The husbands may feel guilty about having different goals. That's why we don't allow wives in our support groups - men speak more freely when their wives aren't there. I'm glad your husband got the implant - most guys I know who get them think they are just great.
Tall-Allen has certainly pointed you in the right direction, has asked the right questions, and has given very reasonable answers.
I have a question for you, which I have asked myself over and over again when a spouse posts a question, without being able to provide a good answer. What is it about a man who has a serious disease but asks his spouse "to compile as much info as possible" about his disease, to purportedly report back findings for his benefit? Why isn't he personally asking the questions you are asking on this Site? Lack of interest in the answers? Apathy about his own condition or treatment? Physical or mental disability? Lack of time? Likes others to do his work? Wants you out of his hair? You are the patient but you are posting in disguise?
Please don't get me wrong - your husband is fortunate to have a spouse like you to help him out and you are as welcome on this site as any patient is - but please help me to understand the thought process behind or the reasons why the man/patient himself is not the one posting the questions or compiling the information. You are not the only spouse who posts on behalf of the patient on this Site and others as well, or who does the research for the patient. Thank you for your insights!
To Notsdr HERE'S WHY - cause most men are grown up babies (ostriches). When a doctor tells a guy he's ok then it's "Look out I'm outta here". When a doctor tells a woman she's ok it's "What do you mean by ok doctor?"
My husband is doing the same thing as Tennis11’s. I’d love to have someone explain why! He was diagnosed in December 2017 and so far, has done no reading/research on his own. It’s true that I was always the spouse to research options when we bought a car, or insurance, or a major appliance. It was a matter of time for him and skill on my part.
But advanced prostate cancer? I continue to be baffled by his seeming detachment from his diagnosis. He has done little in terms of lifestyle changes recommended for men on ADT-or for his other comorbidities of diabetes and hypertension. For my own peace of mind, I do what I can as far as learning about PCa. I have stepped back some since he completed EBRT. He is in the wait to see part of his treatment plan with another year of ADT planned. I’ve talked to the MO about the issue and she referred him to a psychologist affiliated with the hospital oncology center. He’s seeing that person monthly. I am powerless to make him engage more in his health. I accept that despite not understanding his attitude.
I think many of us go all out when we are caregivers. But when we are patients, we don't always treat ourselves as we would like to be treated. We wouldn't dream of not feeding our pets with proper nutrition or giving them their medicine as directed, but we may be lax about how we feed ourselves or take our own medicine. Men have traditionally given their wives full rein in caring for their kids (or give up fighting about it) - maybe tacit roles in a relationship has something to do with it - I don't know. I do know that anxiety and depression often accompany a cancer diagnosis. It's been compared to PTSD.
Great question! I have an answer. I can only address my husband and not men in general when it comes to this. I'm guessing some of us see our illnesses as a sign of weakness, and perhaps more so for men, since society puts a lot of pressure on them to be strong.
My husband is deathly afraid of death. I'm not - I respect it (or so far, anyway), so it's easier for me to gather the intelligence than him. He's been in deep denial in many ways since childhood. His denial is SO deep that when he was directed by his RP surgeon to see an oncologist to start radiation, he clung to the belief for two years the rising PSA was only harmless, still-to-be-absorbed prostate tissue from surgery. He even saw a controversial, outside-the-box (watchful waiting advocate) oncologist 250 miles away to be told it wasn't tissue that was causing his rise.
Yet that wasn't enough and he waited. When he did meet with the referred oncologist to start radiation "today - before the cancer escapes the prostate bed," he tried to talk the doctor out of his recommendation. The doctor, clearly exasperated, turned to me for answers, and I explained my husband couldn't understand the difference between high grade cancer and low grade, like some of his friends, and wanted the same medical advice they received. The doctor's report expressed concern over my husband's denial and the need for immediate radiation.
As denial goes, my husband dismissed the oncologoist's recommendation, calling the doctor "a negative sorter." He took some time before finding another oncologist he had heard would be in line with his "positive sorting." He chose right! I was there when the oncologist told him to continue with WW because the PSA rise was so slow he would probably never need radiation. At that point I told the oncologist my husband believed he was cured and would he please be upfront with him so he could make choices based on his staging? The oncologist hemmed and hawed and finally told him it was "...in his bloodstream" but chances were he would probably die from something else. Three months later, his PSA lurched up and immediate radiation was recommended.
So I can't make this up: Hubby, instead, left town to ski everyday for a month, saying it was always something he wanted to do and I'm thinking yes, he's stalling, but frightened and perhaps he will have time to reflect. He returned with a not-so-surprising attitude: He ordered a new PSA test to confirm there had been a lab error and he didn't need radiation. Results came back higher. He had to wait 3 anxious weeks to get the tattoos and a date to start radiation.
Now, he says the scan doesn't prove it's cancer, but in his favor, he took only one day to decide to get on ADT. The flip side is he rearranged his 3-month check-up to be 2 hours before his next shot. My guess? He's hoping to talk the oncologist into saying he's cured.
In retrospect, reading these posts has made me reflect. I understand fear drives me to try and fix things, put them in order, so to speak, to keep me from feeling vulnerable. Add to that I don't want my kids to feel badly, which goes to show I'm trying to control my husband, myself, and them. I'm aware I am carrying his burden willingly while he stays in La-La Land.
But once I realize I'm starting to take charge, to over-control, which I'd say is about now, then need to back to working on firming up boundaries while maintaining love and compassion. It's easy to be reactive to negative news but harder to acknowledge feelings and accept them without judgment. I stopped going to his appointments awhile back because it was so frustrating, so I need to continue in that vein. Thanks for the opportunity to correct my course; I'm working on it, folks.
Hopefully I can get a few more opinions from this group about the bone marrow comment (once I receive the path report) and in the meantime, stay focused on the here and now.
Thank you for you very detailed and thoughtful response. It was indeed insightful and provided rational, understandable, reasonable, and caring reasons why you are seeking answers to questions about your husband's condition. I suppose there are as many reasons why a spouse would research and post for the patient as there are types of tumor cells in metastatic prostate cancer. Too numerous to count! My best to both of you.
And thank you to the other posters who have also responded to my inquiry.
To Tennis11 HERE'S WHY - cause most men are grown up babies (ostriches). When a doctor tells a guy he's ok then it's "Look out I'm outta here". When a doctor tells a woman she's ok it's "What do you mean by ok doctor?"
When I have been to pCa seminars I have admired the men who are so involved in their own treatment research.
My husband is not involved besides being the patient and listening to what I have learned or researched but that is usually while he’s watching tv or reading.
He has always preferred to go off to work and ignore this whole cancer thing hoping it will just go away. He often won’t talk at the doctor’s office. One nice doctor asked him if he knew how lucky he was to have me because his own wife wouldn’t even Have a meal ready for him and he (the doc) was diabetic. That’s the first time hubby acknowledged that he was aware of my caregiving but it took the doctor bring it out.
I gave up figuring it out a long time ago—18 years dealing with this BS. 30 plus married and it is what it is.
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Metastatic Castration Resistant prostate cancer 
Monitoring disease during ADT/Zytega vacation. 
Second full body scan 2+ yrs later
Decision time. Input welcome
docrok; 15 year update. Rising PSA, Pet Choline Acetate Scan test results Mayo Clinic, Minnesota. 
