is it normal for your oncologist to be very vague?
my dads oncologist doesn’t often tell us much or explain things throughly. Any information I get is through reading the scans. Usually my dad gets his scans done a week prior to his appointment with the MO and the blood test the same day. This means that sometimes he doesn’t get his blood test results in before he sees her.
Last month my dad changed medicines from Zytiga to Erleada, and he’s been doing well until he had some major stomach pains a week ago. His scan came back saying that all his metastases were unchanged (good). One new finding was a lesion on his liver they said was “likely benign” as written by the techs. Also he has bilateral nephrostomy tubes and one of them is a bit out of place which happens. Cut to his appointment, she never talked to him about the lesion and sadly the psa didn’t come in on time. Now that it IS in, his PSA which has been declining is now up from 1.66 to 3.44 in about 2 months. Personally I don’t know much about any of this stuff, I’ve heard “double means trouble” but the MO hasn’t called to inform us of anything unusual (she’s very hard to reach even if we would like to, understandably!)
Sometimes I feel like she is a bit lax and leaves us in the dark. Maybe I’m overreacting though! We only hear from her once every 3 months. Do you think this is of concern or is this a normal fluctuation?
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For me this is unacceptable! Did your dad get a PSMA Pet/CT? If not, can he manage to get one? Doubling time of 2 months is certainly something I would follow up.
He hasn’t had that before, no. I am located in Ontario, Canada so I have no idea if he can get it actually. I thought I read somewhere that you can access it only through research studies but someone correct me of that is wrong!
I’m sure the MO is busy with so many patients but for the past year it has felt like if I didn’t push them on certain topics, they wouldn’t say anything. It just has left us feeling super uninformed
I’m sure, that PSMA Pet/CT ist available on Canada, maybe some Canadians on this forum can inform/assist you. I also recommend that you start researching yourself if your dad isn’t doing it. With PC it’s most important to becoming a pilot of your life. And if your MO doesn’t provide the expected support, get another one. You’ll get advice for best MO in your region in this forum as well.
yes I am the primary researcher, my dad doesn’t do it at all. So I will continue to do more research. I did research the doubling time but I wasn’t sure if maybe some other confounding factor could contribute.
I will definitely look in the forum for MO advice, I didn’t think about that. Thanks so much for your input! I appreciate it
This forum is the best one, the people here are all fighting this disease (or supporting somebody, who is fighting) and some are exceptional experts. Even my doctor is interested. It’s kind of crowd intelligence here. I hope you get the right advice and all the best for your dad. He can be proud having a daughter like you.
I'm a big believer in patient empowerment. This means the patient takes responsibility in doctor/patient interactions. Instead of waiting for the MO to guess what is on your mind and say something, you ask questions and make sure you understand the answers.
thank you for this! I agree with this sentiment wholeheartedly. And a lot of what is in your post (taking notes, comparing notes, writing down questions) my mom and I have been doing.
I think the difficulty is that my dad is on the opinion that they lead the way and we should just sit silent. I think it’s out of fear. So for the liver lesion, I should have told him to ask her if she doesn’t bring it up because my mom and I could not be there.
That being said, something like the PSA coming in late and being double I guess I just expected to be addressed. Because we now will wait 3 months to get that info. Is it wrong to expect that kind of communication?
Try to see it from the MO's POV. When the patient doesn't enquire, perhaps he doesn't want to know the answer, and is fearful of what it may mean? The doctor is not a mind reader. If you and your mom aren't there, how do you know what was really said vs what your father heard? Does he record the meeting?
For the PSA - just arrange for a blood test the week before the meeting.
the oncologist always writes in the post appointment notes exactly what they have discussed for all of our record. We have access to that in the little portal we use. It always includes every topic discussed as well as course of action if any.
I understand their point of view in terms of dealing with a patient who is more on the apprehensive side, that’s the reason why I haven’t said anything about until now (and it’s how I have felt for many months). It’s just the PSA doubling that I felt was something that should have been brought up to us.
But yes we can ask to have an earlier blood test to reduce the chance of not having it on time.
It sounds like you are trying to imagine what the interaction was like from the notes - you can't. It sounds like you or your mom should go to the meetings- if you both can't make it, reschedule.
Regardless of the conversation, the PSA was not discussed as she didn’t have it yet and we have not been contacted otherwise, that’s the main point I am making here. If the PSA doubling is irrelevant then I guess it’s ok that she doesn’t say anything to until 3 months from now. That’s why I asked if it’s a concern, just to ease my own mind.
everyone’s personal situation is different, we do our best to be on top of everything. I am not judging the MO in their methods, I just wanted to know if it’s normally that way. I feel like we should not be judged for wanting to make sure that things don’t drop off if we aren’t there for 1 appointment because of other medical needs and a conflicting exam. Rescheduling was not an option due to a very long wait time (as is often the case in Canada). He was in pain and felt it was best he go.
I have sat in class, baby in my arms, with my mom at the appointment with me on the phone as a second ear. I’m doing my best, but I’ll take all of that into consideration
Normally that way, they avoid negligence and indeed more human personal loss to themselves given their job, specially if they take a liking to your Dad and/or his family, by saying as little as possible and emoting as little as possible. BUT you can work people to get them 'ínvested' as human beings, in your Dad's case. Attend and bring your child along, cry if you feel inclined. They are humans and react. Doubling in 6 months is a bad symptom, in less, is worse.
This is an interesting point! Because up until the MO, every doctor who has seen my dad has had a little more connection with him.
The MO is the only one who hasn’t really connected much and I gather it’s because she has so much to do! So I don’t blame her. Maybe the baby can come haha unfortunately crying in public is something I have only done once when I was like 6, so I know I can’t pull that off. Thank you for your input!
one of us is almost always in, just one appointment we both couldn’t. Both of us can’t be in I think cause of Covid but I think that will be changing soon
I don't agree with this. Not every patient is the type who will be "empowered". I also have to schedule MO appointments long in advance and things can come up an rescheduling can be very difficult. Fortunately I have two MOs one pretty good with a pretty good staff, who can be contacted if there is a concern between appointments, and another who is great. They both do a lot of explaining without having to be asked every possible question, And both also say something like "do you have any other questions or concerns". My main MO likes to get labs from his lab and this makes scheduling very difficult, we usually have to stay overnight because of the distance. I have never had bloodwork that was too late but I would expect that if it happened they would figure out something to do or contact me via the patient portal to discuss the results, not wait another 3 months. A doubling time of less than 2 months is significant and should be discussed with the patient not hidden from them to be nice. Even my primary care doctor will contact me if she sees something odd in my blood tests.
Thank you for your input. Our MO is definitely more regimented. Even the pharmacists were weary when they had to contact her because she forgot to refill a prescription. All appointments are pre-scheduled and are hard to change.
We have no contact in between appointments so it’s just very hard when something like this PSA doubling FEELS concerning but I have no clue what is right and wrong
I am but I understand that some people need the help of family and friends and doctors. If you are the type of doctor that can only handle patients that do most of the work, find another profession. Sounds like this MO is a bitch. The pharmacy is afraid of her? She was probably distracted, thinking of something other than her patients. I stay clear of this sort of doctor.
Monthly PSA will provide more information yes, but if I were you I would first firmly insist on getting results back within a few days at most. This is standard. Being made to wait more than a week for a PSA test is wrong. .
I don't know about Canada but the standard here in the UK is 28 days before the PSA result appears in the portal which is ridiculous. Fortunately I can call my GPs office and get the result in a few days though.
All other blood results come through the same day but they embargo the PSA for 28 days. Theory being it gives time for your MO to discuss with you but they never do.
Same in Greece. I get blood drawn at 9 AM +/- half an hour and receive the results by email at 5-6 in the afternoon. It isn't a question of being impatient. It is a matter of precision guarantee. If the vial with the blood sample is not promptly introduced into the analyzer, evaporation can take place resulting to a higher count. On the other hand, if the vial is hermetically sealed, so as to be stored for next day analysis, the PSA decay will produce a lower count. By getting the results within hours, the recipient gets assured that said systematic errors have been ruled out.
sorry for any confusion, the results do come to the portal within a couple days. It’s just that it came after his MO appointment. That means that she will not address it with us until the NEXT appointment in 3 months (if at all). So I’m just struggling to understand if the doubling is bad and what we should do in the next 3 months.
Can he get an appointment for labs a week earlier, then go back for the consult? I've done this with my m.o. for years...where I go to their convenient location for a blood draw, then the further distance for the consult.
I go to a major cancer clinic here in Seattle. I do my blood work when I arrive, then my Lupron shot and then meet with my MO. By the time I meet with them they have the PSA results. I’m shocked that people have to wait weeks for the results! Didn’t realize I have it good in that regard.
Our oncologist(s) is not vague. And we had a PSA test come back once after the appointment (we usually get results in our portal an hour after the blood draw, so a week is insane to me), and we messaged her about it after on the portal. Then did a phone call with her to follow-up a couple days later.
They always explain everything fully to us, including “what-if” scenarios, and ask repeatedly if there is anything else we have questions on.
PSA doubling deserves a faster conversation. You and your father deserve someone who will inform you of what you need to know, and answer questions related to his care and options. It’s not normal for an MO to not follow up with significant changes in PSA for months. I think you should get pushy with this personally.
oh I have no issue with the portal, it came to the portal promptly! It’s great. But we cannot talk to the MO through it, she is not responsive. And we have tried calling her in more emergent situations and we couldn’t get a hold of her at all. Even the pharmacists who needed her to clarify things had a hard time getting to her. So it just means our next conversation will be in 3 months
Thank you very much for your input. I want to get pushy like you’re saying, I just didn’t want to get pushy and it was unjustified
I'm in Canada. I know there's a line for patients to call oncology. They would message your MO with any questions you have. Doesn't make sense to not being able to communicate with MO for 3 months.
we can call the cancer centre we are at directly, and we have. But if you don’t catch them in certain windows (windows that clearly change), you can’t get a hold of them either and you have to wait on them to pick up the message and pass it on. We have done that but we never heard back and ended up just going to emerge in the end if I remember correctly
I’m not sure I have heard about the specific phone line! I’ll look into that
There should be a patient support line for cancer patients. Ours has nurses who answer. Makes sense especially for people going through treatment with urgent questions regarding side effects, meds etc. Which city/hospital are you in?
Ah yes! The nurses. We have called them before when we thought he may have an infection. I didn’t know if this was a question they would answer, so thank you.
All the comments are great but what does doubling of the PSA mean? Cancer is active ? Cancer is spreading ? Her question was great I do not see an answer.
All of the above comments are correct, but I would add: go to the meeting with a list of printed questions, or as I do sometimes, email them to the doctor a few days in advance so they can prepare answers. Also write down or record all of the doctors answers. And as you will shortly figure out, we have to be our best advocate.
It’s been my experience after the initial visit most oologists don’t even review your file on subsequent visits until you’re sitting in front of them. You need to be aware of your options by researching here and other places prior to visiting your doctors.
Please keep in mind that doctors in these teaching hospitals are overworked and underpaid. I’ve had responses via email at 8 o’clock at night presumably during dinner. As mentioned above, they are only human, but also capable of making mistakes. We can only expect so much from them in our difficult struggles.
Yes, 100%. We usually did come in with a pad of questions written down. Often I sent them in for my mom to ask and I was on the phone because we can’t both be in the room.
I understand how over worked they are, and underpaid That’s why I want to make sure that I’m not freaking out over nothing. I know the MO has a million people to see and do, research studies and what not. I am an underpaid and over worked graduate student, so I feel a tiny fraction of what she feels and I’m thankful for her! And thankful for all the doctors and nurses who have helped us thus far who have done all this with a smile on their face
I changed my oncologist as he was quite vague. He would answer my questions but I often felt I was leading the discussion. However, be careful, as my new oncologist has become quite forthright and I find I have to reign him in sometimes.
I see, yes. There are always two ends of the spectrum. I will at the very least discuss with my mom that our feelings of being a bit left in the dark are not completely unfounded. Switching scares me because of our crazy wait times, but I would do my research to see who is out there
Because my original oncologist was vague, I approached another oncologist requesting a second opinion. He agreed to revisit my file and provided me with his assessment of my care to date. The outcome being he would have followed the same treatment path that my original oncologist prescribed. So, what I achieved with all that is I now have piece of mind that my treatment decisions were good. I then decided to change oncologist as I thought it better to have more dialogue than less. In the end, we as patients have the final say on what treatments we have. DD 😎
Perhaps a second or third opinion might help? And, yes, attend the consults. And, yes, take control of the situation. To state the obvious: this is your dad's life that you're talking about.
Glad that you and your mom are asking questions. Keep it up. And, you'll get good advice here.
I had an issue with my dad’s last oncologist, he was retiring in about 6 months at the time and was very lax, didn’t seem concerned about much, and wasn’t clear on his answers to my questions. The ironic part was that we were at one of the top cancer hospitals in our state! However the good part was that I, like you, was not able to be at every appointment but our portal had very in depth notes from the visit that if I had any questions about, I would call his office and I received a call back about an hour later. Being that your dads oncologist is hard to reach, I wouldn’t hesitate to find a new one.
Once my dad’s oncologist retired, we have a new one who is more aggressive and precise with her responses. It has made me feel a lot less anxious! My opinion is—- get a new oncologist, the situation we are faced with as a loving family member is stressful enough. We don’t need the added stress of having to beg doctors for answers!
As far as the PSA— I would wait until the next reading because it would give you more information. In my dads case, his psa rose twice by more than double, and that is when we switched to a different treatment. Best of luck to you
your experience with your MO is a total replay of my experience with my urologist. Honestly I accept responsibility for this because in the initial discovery I was in shook, denial or whatever and was clueless to even ask a pertinent question. Thanks to this forum and other other means I have learned to be the manager of this disease.
When I joined this forum I had no idea what a MO was but the more I read I realized that my Urologist after my diagnosis of the cancer and my saying no to surgery he had no other options to really offer. I am the care giver to a handicapped wife with no real support system so surgery was not a real viable alternative.
So I asked for a Lupron shot and a referral to a RO. This week I also have a appointment with a MO and I am hoping she will take me on as a patient and manage the rest of the journey. I tried to get an appointment with the Phoenix Mayo but they declined.
I can not thank this forum enough for helping this clueless guy and giving me the power to take charge. It may not be a game changer but it has improved my quality of life. Thanks for all you do and for your patience with us struggling through this experience.
If I were your dad I would be concerned about the doubling but not drastically until the next test. Additionally, if able request a new Oncologist. Not sure how it works in Canada but where I am in the US we have portals as well. My blood test results come in before I wake up the morning after they draw the blood, it was slower at the height of covid but never more than 2 days.All of my Drs call me when something of interest occur and respond to all of my questions via the portal, usually by the end of the day I enter it. So this it what I gauge your concerns by.
I get a lot of info from this forum and researching myself online.
Since Canada operates differently you may not have access to any of this and may have to make the best with what you have but I agree with TA if your this concerned start studying and going with your dad to the appointments and getting the blood tests in advance of the appts with the MO which I always do.
I have access to all his test results but it seems that there is no good way to communicate with the MO between appointments, especially in situations like these.
While I understand our MOs and ROs have a very difficult position, usually more patients then they should, and so much responsibility on their shoulders, they are still caring for our loved ones (or us) with a life threatening disease. I’m saying that we, as patients, have the option of choosing our physicians, and being in control with our appointments. If we don’t get the answers we want, or need, then either he or I keep the oncologist in the room until we fully understand the discussion. We are blessed with a wonderful MO though, she is amazing. Draws pictures, writes everything down for us to take with us as she’s talking, he has labs 20 min before his appt, and she always has the results at the appt. It’s been this way for 5 years now. Sorry, long response! I’m just saying we push and push for answers and don’t stop until we get them.
If I don’t go to an appt with my husband, he has a hard time telling me what she said. He listens, he hears her, but it’s so much too important info to comprehend at times that it just doesn’t seem to register with him. Rather it be nerves, him simply not retaining the info, the info being something he doesn’t want hear .. he just doesn’t do well remembering or understanding… and he is a sharp guy. That’s why I am usually with him and I think why this oncologists manages her patients the way she does.
If after your dad’s appointments you (or he) has any questions about anything whatsoever, call the office or send a message via the portal. Even if that is a couple times a week after his appointment. Don’t wait for them to call you. The oncologist is working for your dad… and he has every right to remain in control of his situation.
Regarding the doubled PSA, we’ve had that happen but by more than double. My husbands increased from 0.015 to 3.6 in a 2 month window at one time. At that time, he started treatment and it immediately started to decrease back to being of no concern. It does happen, but it does usually mean the cancer is awake and active. When it happens here, his MO starts some sort of treatment again. If your dads has increased significantly then if I were you, I would want a monthly PSA to monitor it closely. Even if that means simply labs monthly and appointments every 2 months. I would also ask what is the best next step to keep it from continuing to increase.
Please don’t think I’m saying you and your family aren’t doing anything that I’ve just said, I’m just sharing things we’ve found that have worked for us. I love that you’re on top of things for your dad.
Sounds like you’re doing everything right and all that you can do for your dad. He’s lucky to have you in his corner.
thank you sooo much for this thorough response, I really appreciate it!
The portal doesn’t allow us to message the MO but we will call and try a get a hold of her or the secretary. Our MO is a lot more busy and she’s usually in and out of the appointment in like 5-10 minutes max, we talk more to I think the residents who take all his vitals and other symptoms. They are very nice and helpful.
In terms of the PSA, he hasn’t stopped treatment, he’s currently in treatment. His PSA went from 1.66 to 3.44 in 2 months, so if the cancer is awake and active, maybe there are other treatments that work better do you think? Or maybe this may resolve. Either way i agree, and will discuss taking more frequent blood work. Thank you again
Hi, I wish I could say something definite but one thing we’ve definitely learned is that each man’s case is different. For my guy, the treatments that have worked the best over the past 5 years was when he was taking Lupron, Casadex, and (I want to say) Xtandi. He couldn’t do the taxatere chemo treatments so they moved him to a pill form and I believe he started with Xtandi. What seemed to help him the most was the hormone therapy (Lupron and Casade) for about 18-24 months. I will say though, this completely depleted his testosterone to 0 and he was a mess. When he was able to go off the hormone therapy, his PSA stayed very low for a good year or more. Have him a nice break. I hope this helps.
Okay StayingSTRNG, Let’s discuss the PSA. A doubling time of anything less than 3 months is very concerning as it means the cancer is growing rapidly and exponentially. Out of control. So the hormonal therapy regimen is not working now.
Why was he switched from Zytiga to Erleada? Was PSA rising on the Zytiga before the switch? If so, then it means he developed resistance to it and the switch to Erleada would be appropriate. However, if his PSA continued to rise so rapidly even while on the Erleada, then it means he has resistance to that as well. A repeat PSA test now (not in three months) will confirm this. Request a repeat PSA test through the portal. And a PSMA PET scan (Pylarify)which is available in Canada to assess metastatic burden.
If he is resistant to ADT plus both Zytiga or Erleada, then he has few hormonal treatment options. Nubeqa could possibly still work. Or he could do a few cycle of BAT (monthly high dose testosterone) which can restore responsiveness to advanced androgen receptor drugs for many. Perhaps a clinical trial may be available for this?
If the PSMA scan shows high uptake in his cancer, then treatment with Lu177-PSMA (Pluvicto) may be a beneficial treatment. This too may be available via a trial.
These topics need to be brought up and specifically discussed with the MO for consideration. Perhaps you can send such a list of questions to her via the portal in advance of his next appointment so she can be prepared to discuss them. Paul/MB
His PSA was dropping on Zytiga but so was his quality of life. He was having really bad shortness of breath to where he was hyperventilating just putting his sox on. He was doing worse on ADT + Zytiga than he was on ADT alone (he did just ADT for a little while before hearing back from clinical trials). PSA only went up after starting Erleada
This is great information, thank you thank you thank you! I truly appreciate it!
actually one more question for you! My dads testosterone upon diagnosis was 3.7, so low as it is. It has gone down to 0.2 but over the last few months went up to 0.5 and 0.6. Just wondering if this matters at all because it’s still low. It’s never been discussed but just something I have noticed
Assuming that you are using ng/mL for your units (not sure since you don't say), my T stayed at .1 ng/mL (10 ng/dL) or lower the entire time I was on ADT. I'm not a doctor or an expert on PC, but it seems like increasing T could indicate a developing resistance to ADT. Possibly something else to keep an eye on IMO. If you are using ng/dL for your units, then even 3.7 ng/dL is ridiculously low, so forget what I just said. 🦊
ah that’s my bad, I assumed it was measured in ng/dL because it’s what I’m used to! It’s in nmol/L. So converted that is 3.7 = 107 ng/L, 0.6 = 17 ng/L.
So it went down to 6 ng/L and now it’s up to 17. This would make more sense haha sorry
Hope I'm not repeating something already suggested, but does your portal have way to message the doctor? If so, especially since the result came in after your appointment, you should be able ask for her take on the jump in PSA.
No worries! the portal doesn’t let us message the MO sadly. It seems like it has the ability to but she just doesn’t have her contact in it, other doctors do. Like we saw a geneticist for one appointment and I can message them
Maybe I can ask her to add it on the portal so we can message her
typically yes double does mean trouble. If my psa doubled in 2 months I would request another psa after a month, and see if it really is rising that fast. (I have actually done exactly that). If it is, then I would request a sooner follow up appointment. Is that an option for you?
there are no perfect Dr patient interactions. My experience required me to research my situation based on PSA and Gleason Score, etc. Based on my assertiveness I was treated aggressively, thank goodness. I am grateful but found the whole experience exhausting and scary. The doctors follow protocols and “evidence” based treatments. They do not think independently. Sometimes, you get lucky and get an empathic person. Be strong and respectful but be persistent. It is your health. Live long and prosper.
I did not read all the responses, so if this is a repeat, just skip it. We, too, are in Ontario (London). He has bloodwork monthly the day before the appointment and it is available to us within hours. If we get it the day of the appointment, we go in early and our MO has results before we see her. We do try to go in knowing the results. We also go to every appointment each with a set of written questions and take notes during the meeting. No question is ever left unanswered. Our MO and RO have known from the start that we are thorough, pragmatic people who expect answers, and we get them. In fact, our MO told us last meeting that she appreciated our appointments because we are informed and ask relevant questions.
PSMA scans are available, at least for people involved in trials. I have not researched the Illucix approval, but we know from our MO that there is an expectation that more approvals are in the works.
Yes many MOs don't like to be bothered with patient's concerns. However, through reading this forum, relying on TA and others to provide cutting edge info, you can confront the MO with your concerns. You might wind up changing MO. You don't owe them anything.
As for tests and scans, I also like getting the results ahead of meeting with MO. Some don't like that, but perhaps you should insist. If MO resists, at least consider changing to someone with a different system.
Hi. I am a Canadian living in the United States. As a Canadian who has experienced both the U.S. and Canadian systems first-hand in the context of cancer (my husband has advanced prostate cancer, and my deceased father had prostate cancer living in Canada), I would say you should look into getting treatment for your dad in the U.S. The Canadian system is in shambles since COVID, and the wait-times and inattention were terrible prior to that. To give you an idea - my husband's MO is extremely attentive. When my husband had his first PSA doubling she called me directly and got scans going right away. She regularly reaches out to me any time there's a result that is bad or even looks bad. She'll even call me directly (no nurses involved) if she thinks I might be worried about a result and she wants to tell my why I shouldn't worry. When my husband has been in extreme pain, he's been able to have an MRI within HOURS. Results posted within HOURS. I spoke to her yesterday to discuss next options and TODAY I got a call from a different hospital ready to register him for Lu177 treatment. The Canadian healthcare system is unacceptable. Get out of there and get real care somewhere else. Sorry for the rant, but when it comes to the lives of the people we love, Canada just isn't good enough. I will never go back.
We've seen many doctors for my dad. Most respond really well to questions. They all have been pretty tight lipped until I pressed on certain details. But if you feel brushed off or like your mo is uninterested... It's possible that they are. Your portal doesn't have a message function?
If your insurance will allow it (or... Idk how it works in Canada), try and visit another mo for a second opinion and see if you guys have a better experience. If you do ... Just switch
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That’s why I want to make sure that I’m not freaking out over nothing. I know the MO has a million people to see and do, research studies and what not. I am an underpaid and over worked graduate student, so I feel a tiny fraction of what she feels and I’m thankful for her! And thankful for all the doctors and nurses who have helped us thus far who have done all this with a smile on their face 
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