Am I nuts or should my gp/ internist have an idea of side effects of advanced prostate cancer treatment. Seems like there is a disconnect in my overall treatment, which is not only cancer, but the result of it.
Any recommendations for a doctor who is up to speed in seeing pc patients? NYC area, Mt Sinai preferred, but other hospitals considered. Thanks
Don't you see a medical oncologist for that?
He is treating my cancer. Doing a great job. When I go for my annual, seems like there is no understanding of side effects. I’m doing the talking. Shouldn’t it be the other way around? Or am I making a big deal out of nothing?
I'm big on patient empowerment, and you sound like an empowered patient. You are the only true expert in the way the disease is in you. No one knows your disease the way you do - it affects everyone differently. In this era of specialists, only a medical oncologist has the training and experience to understand all the potential interactions of all the drugs you take and your anatomy and history. Your PCP isn't trained to know any of that stuff, probably has little experience of patients with advanced PCa, and has to rely on you a lot. He is there for all the stuff that your medical oncologist can't help you with, and to send you to other specialists as needed.
Good points. Guess I was expecting too much. Thanks
Probably just me but I haven't seen my GP since my diagnosis. Luckily I haven't had the need and my oncologist has been responsive to my requests for whatever blood tests I request i.e. Cholesterol, Thyroid, Vitamins, etc.
I am a physician and any PCP that would treat prostate cancer scares me!!
Absolutely. But that certainly doesn't mean the PCP shouldn't know what's going on--including with PC and treatment side effects. Some physicians can't be bothered to get on the horn with other specialists and discuss what may be happening outside their primary health concern. I ran into that frequently when I was practicing. And I generally (not always, but generally) found specialists to be cooperative with making sure I had all the information I needed to do MY job. (And of course, being able to say "I don't know, I have to check with your specialists" is also very important.
Good advice. My PCP is able to access my data records, and I tell all my specialists to share my records with him.
That's ideal of course. There are docs who are just too busy and "can't be bothered". I remember early on in my career taking a medical history on a patient who had developed chronic kidney disease and whose PCP had no idea that the patient was taking lithium, prescribed by his psychiatrist. Definitely not cool. Why should a dentist have to straighten that out?
No, not necessarily. Remember, a PCP or internist is a generalist. Your MO, RO or uro should be the individual informed as to what side effects your treatment has or will have. My GP will look online during an appointment to review side effects with me. I cannot expect him to know everything. But, your GP/internist should take the time to inform him/herself as to what side effects there are.
Guess every gp is different. Thanks
Maybe you will find it helpful to think of it in the framework of their education. Your MO completed an internal medicine residency before completing a fellowship in oncology. Your MO has the big picture of all your medications, their side effects, and their interactions. While under active treatment, your MO is the person in charge of your overall care, while your PCP is there to manage unrelated conditions, albeit keeping your MO fully informed. So your PCP would manage your gout, diabetes, thyroid, blood pressure, cholesterol, etc, often checking with your MO before changing anything.
Bingo!. Same experience with PSMA PET..the answer was a quick YES, but I had to ask...for high risk Gleason 4+5?????????????????????????????????????
My female GP stressed that PCa was for the specialists only in general, but she did ask for my approval before she ordered annual PSA for me..though not annal, because i didn't visit her annually. She DID NOT offer a digital exam...my friend had to ask his male GP for a digital exam. I was fine with the omission of a digital exam...later a urologist did that of course.
Once I knew I had recurrence I switched from my urologist to a urologic oncologist. That switch was based on sound advice from men who’d traveled that path before me.
I would submit that in my experience is oncologists have minimal knowledge of the overall side effects of prostate cancer treatment and primary care physicians are clueless.
You need to find better doctors.
Based on my own experience I would wager the majority of posters on this board have more "working" knowledge about PC, it's treatments and their side effects than their respective GP's/internist.
Jim's PCP prescribed Rifampin having no idea it altered the absorption of Abiraterone. Had I not messaged Jim's MO, we would have been in trouble. I feel his PCP should have known that or at least checked before prescribing. I know PCP's don't treat PC and aren't specialists, but I feel they need to be aware of their patient's conditions. They have a list of medications in his computer chart and confirm them every visit. What's the point of that if they don't know what some of them are?
It's helpful if you specifically request all labs and test results go to all your doctors. No doctor can know everything. We have to be proactive in conveying everything , just in case.
I make sure all of my husband's doctors have all his tests, medications etc. But there are many people out there, especially older ones, that would not think to do that and have complete faith that their doctor understands all the medications being taken. At the least, the PCP should advise the patient to run it by their specialists.
From our experience, no. Your primary care doctor usually isn't aware of the ins and outs of all cancer treatments. That's why it's important to tell them yourself...and why you see an oncologist who is trained in that area.
PCP's are generalist's whereas MO's are specialists......
Think of them as, one is your wife and the other is your girlfriend.....
Good Luck, Good Health and Good Humor.
j-o-h-n Saturday 02/18/2023 5:52 PM EST
My radiation oncologist seems to be completely out of the picture now that my radiation treatments are over, and when I mention the side effects I am still experiencing from the radiation to my urologist he just tells me that they are "normal" and can last for at least 2 years. Two years from what I'm not sure, since I had both IMRT and LDBrachy treatments in series. At least my GP when I talk to him is sympathetic and has tried a couple of things, though they haven't helped much. I have also been trying LDN on my own but it doesn't seem to be doing anything either. I guess I will need to find a urologic oncologist in the future if any serious PC complications develop, but I'm a little mystified why they didn't just refer me to one initially but instead have me keep going back to a urologist. I guess it's probably a business decision. 🦊
I developed advanced PC due to my PCP not knowing beans about it. He directly ignored my bringing up issues that had he acted on I would have gone on normally with my life. He acted like he had the knowledge and even made proclamations about PC. But later admitted he knew little about PC, said after I did a few months of research on PC that it looked like I knew more than him.He missed every sign, didn't have any knowledge from a multi day PC what do they call those conferences oh ya "golf outings" that would have saved me from APC.
And I paid the price.
Don't count on you PCP for any cancer care. Don't count on your local hospital to deliver anything but SOC.
Get to a major cancer hospital.
During my last annual physical, my GP readily volunteered that he knew nothing about Xtandi. Yet, he went on to prescribe two meds he thought might help me. Unfortunately, both quickly potentiated the fatigue and brain fog so after enduring that for a few weeks, I stopped taking them, one at a time, to check my hypotheses. Both were culprits. Then I alerted his nurse.
When we had a recent scheduled follow up, he was suddenly interested, expressed regret for the side effects of these two meds recently tried and actually volunteered to an online look up to figure out what Xtandi and Xgeva are about. He seemed onboard about Lupron. I brought along the Xtandi insert that comes with and he waved it off. However, he did look the others up on line during my office visit so I give him credit for that. Defer to the MO.
Unfortunately my reply will probably not been seen by many as last reply was 2 months ago. Noted personal experiences pretty much are in line with mine as well. I’m exhausted as not only been dealing with what was thought to be late onset hypogonadism prior to PCa diagnosis, which four years later I diagnosed most of those symptoms were from the high dose statin I was taking for lipid abnormality. The brain fog and weakness were severe.
Also I discovered FSH and LH were three times high level of normal and Prolactin was mildly elevated as well. All these are know to promote angiogenesis so not good in setting of neoplasm. And Vit D was low. See previous postings if interested. It’s complicated!!
After stopping statin most of these symptoms dissipated over months and I feel best I have in years as my uPSA rate of rise began increase with T rising to as high as 700 and cholesterol 225. While LH, FSH, and Prolactin remaining elevated.
Then I noted incidental finding on my PSMA PET CT report (which was negative for any metastasis) of an opacified left Sphenoid Sinus. That along with recent worsening vision along with having vision only in eye on same side as opacified sphenoid sinus got me into emergency sinus surgery which improved vision (thankfully). Mycetoma
At 82 years of age I’m exhausted trying to stay abreast of all this and frustrated; just as other postings here describe. Have served as interpreter for Urologists, endocrinologists, ophthalmologists, cardiologists, oncologists, ENTs, radiologists, neurosurgeons, internists, sleep medicine doctors, rectal surgeons, etc., etc.
Thank God for my regular primary care internist who has walked this path with me.
Maybe AI will be helpful in the future. But can’t see AI will be able to practice appreciate the Art of Medicine. Medical practice of today cannot deal with such complexity nor deal with everything is connected to everything.
There may not be a solution in our current paradigm. I’m reminded of one of the rules of the House of God was, ”If you don’t take a temperature, you won’t find a fever”. Would appreciate if anyone reads sends a reply or a message so I might get an idea of who saw this reply.
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