Well, after the slight increase in my dad's PSA (from .07 to .13) I went with him to the oncologist armed with research and questions.
Unfortunately, his regular oncologist who we really like was on vacation so we had his colleague standing in for him and from the moment he walked into the office and shook my dad's hand but didn't so much as glance at me, I knew I was in trouble.
I asked him if we shouldn't test testosterone along with my dad's PSA, as I have seen many men's doctors do. He replied (and proceeded to grope my dad's chest) that since my dad is still having hot flashes and still has enlarged breasts than we don't need to test testosterone since that shows that it's low. I really can't understand that as I have read many reports of men ceasing Lupron and continuing to have hot flashes and enlarged breasts for many months. To me, it seems like it would be a simple, yet useful additional test that would give us insight into the changes we may see in other areas such as his PSA.
Secondly I asked him if we could have a referral to a radiation oncologist since my dad's PC was limited to his lymph nodes (and I cited several studies that you all sent my way that showed great results with pelvic radiation to men who have localized lymph node involvement). He wouldn't even hear me out. He declared that since my dad is stage four there's nothing we can do further for him.. no surgery, no radiation.. and he used the old idea about "once it's escaped you can't treat locally."
Regarding the slight increase in my dad's PSA he wasn't concerned and said that it's staying nice and low and he said he was in a "remissive state." And while these words would usually bring me great comfort, after hearing about his lack of knowledge in other regards it's hard to share his enthusiasm and joy for my dad's latest PSA.
I think from here I'll send a message to my dad's regular oncologist via MyChart. He's been very open minded about reading and looking into any research I have to share. I trust that even if his gut reaction is to shut me down, he'll at least look the research over and give me valid reasons for why. He was very accommodating when I requested an appointment with a geneticist even though he doubted we'd find any responsible genes (and he was right).
Anyhow, I just wanted to share a little update for those of you who took the time to advise me and to ease my never-ending fears!
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Something I've learned over the years in dealing with doctors - if you can, send links to articles in peer-reviewed journals before the meeting, with a note that you'd like to discuss it at the next meeting. I think you will get a better response than if you dump a lot of paper on him at the meeting and expect him to respond on the spot.
That's certainly good advice. Like I mentioned, I think I would like to send him over some of the research that you had shared with me regarding radiation as well as some other links that others have shared regarding the issue. I had misgivings about talking with a new oncologist about making changes anyhow, but I had hoped that he would at least give me a referral to the radiation oncologist to get the ball rolling!
Would you mind sharing your thoughts on getting his testosterone levels tested alongside the PSA?
Oh, and I forgot to mention this in the original post but he seemed to think that my dad didn't need to take Casodex alongside Lupron any longer. He said that while Casodex has been proven to keep the PSA down longer than Lupron alone, it doesn't extend survival time. He suggested that we talk with our regular oncologist about dropping the Casodex. He's been on it for 4 years and this is the first time it's been suggested that he drop it. What do you think?
That's what I figured and as far as I can see it, additional information into his testosterone levels shouldn't cause any harm. And no, he is not taking tamoxifen for enlarged breasts. I only started going to his appointments with him since my mom's stroke in 2017, so unless it was discussed with my dad before that, I haven't been heard anything about it! I'll look into it, however.
And yes, I had actually read an article about that as well. That casodex can actually become an antagonist after some time. I always figured that once we saw the PSA begin to rise, we'd drop the casodex to see if that changed the course for some time.
I've just completed 3 years of Lupron and it was successful. Went to LA Fitness almost daily but did not take tamoxifen due to fear of nausea. Is it too late to take it. Breasts didn't become too large until 3rd year, but they made up for lost time. Will or does tamoxifen help at this point. I'm hoping my muscles start developing again as daily walking of 2-3 miles and general machine exercises are OK but biceps seem a bit like Nerf balls. Have about 2-3 weeks til Lupron's time is up.
That works for some doctors I can’t even get my dads doctor to return my call let alone email him something he always has his tech who is only a tech and not a nurse to return my call and she has no clue. Why are these doctors you can email a concern too they r all to busy and self absorbed
I can't think of any reason to play phone tag with a doctor in this day and age. Every health institution I've dealt with has an email system for patients. The govt encourages doctors to use online systems and will eventually penalize those that don't.
I can sit face to face with MO and see he is in such a hurry he won't take the time to explain thingsand answer questions properly. I find mychart to be valuable but always address my questions to the nurse practitioner. She shows more concern and respect in appointments and always gets me answers sooner via mychart.
Unfortunately, nurses seldom know as much. My experience with nurses has been they often say things that are wrong, and don't get the question precisely right when asking the doctor for me. Why would you not just email your question directly to the doctor on mychart?
One time I called the urologist and told them my dad had unbearable pain because he has cancer that has mets to bone and we assumed it was getting bad the receptionist said he will call back and never did few days later the tech called back and told me nothing more doc can do for ur dad? Go see a radiation oncologist I said without looking at him? So she gave a phone number but then I called family doctor and he referred us to a orthopedic doc did a mri and it was sciatica and arthritis no cancer in that area
So I don’t know u r fortunate with ur doctors
There was a cancer doctor here in Michigan that was well recognized and had all these awards only to be investigated and they found out he was killing healthy patients that didn’t have cancer for Medicare his name was Farid Fata he’s in jail now this happened a few years ago so it’s pretty recent he is another reason my dad is afraid to go to an oncologist it was terrifying how he fooled his patients and all the doctors that referred him were shocked it was on the news daily and the former patients that survived the chemo talked about what he put them through and the ones that died there families were on the news to get justice so docs scare me they r greedy they showed his huge mansion and all of u look him up it’s all over the internet
Doctors have a God complex I worked for many and they belittle their employees
Ur fortunate ur doctors email u back it’s all about money and not patients I don’t know we have no luck with a lot of docs
I am fortunate. I've met many doctors and never found one who had a "god complex." In fact, the opposite- they want the patient to make decisions. The ones I've met get frustrated by patients who refuse to make informed decisions about their own health.
A remember recently it made the news when a patient killed a nurse. Should all nurses avoid patients because of it? Tell your father that the reason that killer doctor made the news was because it was very unusual. If it were common, it wouldn't be newsworthy.
Yes, you are indeed fortunate to have met "doctors" who didn't have a "god complex". Most of the "doctors" I have met in Bombay (more than 80%) think they are Gods. Of course, you are living in the US and things may be different there.
How I wish I had your experience. It would make things so much easier and better.
They actually teach doctors "shared decision making" in US medical schools and have for the last 40 years or so. I'm sure there are rural communities where paternalistic decision making still occurs, but it is increasingly rare. Most doctors expect patients to have searched the internet before the meeting. However, not every patient wants this.
I suspect it has to do with culture. There is a strong culture of individualism in the US that does not hold true in most other countries. I know it's changing, but there is a history of varnas in India, and I suspect that the doctor "varna" (I know there is no such varna, but the principal is the same) is treated and expects to be treated like Brahmins. It can only change if both patients and doctors want to change it.
I go to Cleveland Clinic....Who does he see usually? I believe they have Dr Garcia and Dr Ornstein at Taussig in Cleveland... Don't know about Wooster...
We see Dr Masci.. he's a wonderful person, although I know that the bulk of his patients are breast cancer fighters, so while there's the hormonal factor that they share in common, prostate cancer isn't his specialty. I do appreciate that he is open minded to my questions and requests. I believe he cares deeply about my dad's health, too, I just wish he would be the one to bring up the ideas such as radiation, etc. We'd probably go to the main campus if it were closer. We're about 2 hours south of Cleveland and driving in Cleveland is pretty intimidating for us country folks. =)
I am 3 hrs south of Cleveland near St. Clairsville, Ohio.... I go to Dr. Ornstein at Taussig--I like him, but he is an SOC guy...he knows I take supplements and did stereotactic radiation (did not endorse it but was fine with it) .not sure about Dr. Garcia at Taussig. They both specialize in urological cancers and do prostate cancer research.
Yes, we come in on the highway and it is a pretty direct shot off 90 to get to Carnegie Avenue--we go in the afternoon and it usually isn't too bad....
I am sure you have asked this of Nalakrats whom you follow-- we have a similar regimen I am sure--D3, Curcumin, 5 Loxin Inhibitor, Grape Seed Extract, Zinc caps, etc.... Does that answer your question??
U r a good daughter I’m my dads advocate too and I go to every appointment with him and look at my chart every time we get blood work done so I know what his psa level is and what to expect when we r there. But I feel u. I’m in the same boat.
You can get anything you want as long as you are willing to pay for it..Referrals to RO's, testosterone tests, PSMA scans, you name it. But if someone else is paying for it (insurance) then you must follow their rules, and THEY make the rules..
You can always request the "self-pay" option from providers when insurance companies refuse to cover. This can really save a chunk of $ compared to what is charged to them.
I had a PET scan denied, then found a radiologist that did it for a lot less when I told them I did not have coverage. In hindsight it was a good move on my part as the scan revealed previously unknown metastasis.
This seems like a doctor who is covering for another doctor due to a vacation simply saying "relax, don't change a thing now, steady as she goes". Just make another appointment with your actual MO when he or she returns. Doctors don't like to change to many things while covering. IMHO.
Absolutely ask to speak to his usual doctor. My Partners radiologist and oncologist are both saying his treatment (Radio, ADT and Chemo will be to "cure" not manage as its was only in one lymph node! Get more information.
Your father is very fortunate to have such a caring and involved caregiver and advocate as you. I think the advice that Tall_Allen have you is very good. I go to a M.O. at the Mayo Clinic in Jacksonville, FL. After 4 years of undetectable PSA mine is starting to creep up, now 0.22, still very low. My M.O. is very open to discussing my concerns, answering my questions, and explaining why things are being done the way they are. At our most recent visit he advised me to stop taking bicalutamide. It sounds counterintuitive, but as my M.O. told me and TA said in his reply to you, after taking bicalutamide long term, stopping it sometimes results in a decrease in the PSA. I’ll find out when I visit him again in mid-August. I would think (and hope) it would help eliminate some of the nasty side effects that bicalutamide gives you.
He was pleased with the fact that other than some fatigue I am totally asymptomatic. Even my lone pelvic bone tumor disappeared from scans a couple of years ago, and has remained gone as of a recent Axumin PET scan. I had a little bit of localized uptake in the left seminal vesicle. He said we probably could zap that area with radiation, but since it wasn’t causing any issues right now the potential for collateral damage outweighed the potential benefits. I trust his judgment and advice. He always allows me to be part of the decision making process, and always explain the pros and cons of various treatments and the ramifications of our decisions. He said that at this point he is more concerned with any emerging symptoms as he is with the small increases in my PSA. Since My PSA (in spite of the recent minuscule increases) is still very low and I am still asymptomatic he was pleased with how stable I am staying in terms of lack of disease progression. We discussed where we will likely go next whenever I hit the point that I need to add additional treatments (Zytiga, Xtandi, etc.).
BTW, a few years back while my one pelvic bone hot spot was still active, we discussed zapping it with SBRT. My M.O. wasn’t in favor of it at that particular point in time, but he didn’t dismiss my concerns about it. While I was sitting at his desk he got on the phone and spoke with one of their radiation oncologists. She pulled up my scan images while we talked. After I left him, we went down to her office to discuss it while she went over the scan, and the pros and cons of zapping it then. She said it was do-able but, like my M.O., suggested that I wait. Both she and my M.O. said that sometimes these things resolve on their own. Sure enough, it did.
I guess my point is, I’m not a very patient patient, especially with a killer lurking inside me, and that as much as I would like to take a shotgun approach and throw all my weapons at the cancer all at once, there is a reason they do what they do in the sequence they are done.
That is just my own personal experience. Everyone’s situation is different. I hope now that your father’s primary M.O. is back, he will get a higher quality level of treatment.
Best wishes to you both.
You can order just about any blood test you want through New Century labs. newcenturylabs.com/ Select, pay, print the order and go to any nearby Quest labs for the blood draw, and you will get results within a couple of days. Just be aware that there are several different methods of measuring results depending on the lab. For instance, PSA blood results will be 20% higher with Quest than most other labs because they use a different assay method, which they note on the results page. So try to avoid comparing results from different labs.
This is a situation I hear about frequently and it is insanely frustrating. Most Urologist and MO's are either not up on the possible imaging or targeted treatments, or just not interested enough in prostate cancer to go beyond dated standard of care. There certainly are a few docs that can help, myself included. I have been using advanced imaging (C11-acetate and now more recently PSMA) and other testing for several years to guide and navigate treatment. If something can be safely approached with radiated or removed, we would help you understand the merits and risks of doing so - and help arrange for the treatment. I work with folks all over the country and as an integrative oncologist, together we'd look into possible treatments and also consider alternative treatments if they appear reasonable. Give my office a call if you would like to discuss further. 480-881-5621 drfabio.com/integrative-onc...
It is my opinion that "the substituent doctor is a chauvinist A.Hole". I would write a letter to his superior and tell him how you were treated. I know there is a lot on your plate but it irks me to no end to see a patient get the old "here's you hat what's your hurry" routine.
You are a wonderful daughter and God will bless you for your love and devotion to your Dad.
Please! Don't stress ! I am almost 19 years since my radical prostate surgery. My PSA is now 0.21.....I got as high as 0.29 2 years ago. I'm now 67 ...68 in Sept.I have not tried to kill this thing right off as I am not willing to sacrifice my quality of life. I have a low Testosterone now as I have gained 2 cup sizes for sure & my weight is hard to control...not fat....but a little chubby. I am happy with my decision. I am in a golf tournament this weekend with guys that are significantly younger than me....I'm not a great golfer by any means...but I stayed with them today, & I will tomorrow too!God Bless You!
even though you are at Cleveland Clinic -- you might consider a consult with a prostate cancer specialist at a major cancer center (like MD Anderson). It is worth a special trip. This expert wouldn't take over care but can provide the kind of big picture advice that is really helpful to you and your dad, and also should be perceived as helpful to your local oncologist (who doesn't specialize in prostate, so he cannot be up on everything). They do seem underinformed. The substitute should just be avoided, but the main guy you see does seem receptive. We live in Hawaii and we see a consulting oncologist in San Francisco, and it is one of the best things we do both medically and for peace of mind. And our oncologist here is happy to have someone else on board with the treatment plan. By the way - that doctor *does* recommend getting a testosterone level once every few months added on to the PSA (every month). I can't imagine why a doc wouldn't simply add on a testosterone level - it's not a big deal. Same with a referral to radiation oncologist. if you want to see a rad onc for pain that is perfectly 100% reasonable. Although at stage IV, radiation is not curative, the treatment plan overall is palliative --> reducing pain!!! We find consulting with the RadOnc also really helpful in deciding whether to spot treat or not for pain. RadOnc can explain why you might want to wait or go forward -- e.g. radiation to pelvis does more bone marrow damage, but if the pain and mets are significant, can be worth it.
Good luck with all of this. You are doing well with it all -- you just need to get better response from the doctors. Keep looking for the sweet spot, and see if you can get an expert second opinion. Health insurance will usually pay for this as well.
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