For those of you who, like me, are being treated by an oncologist who treats other cancers in addition to prostate cancer: Do you have any reservations about being treated by a what I will call a general oncologist? Do you sometimes think that perhaps you should seek out and switch to a PCa specialist? Are you reticent to make a change simply because you like your current oncologist and you believe that he/she is fully competent?
For others of you who have an opinion on this subject: For a man with Stage 4 PCa, how critical is it for him to be treated by an oncologist who treats (and perhaps researches) PCa exclusively? Yes, I know, "It all depends." But try to explain.
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Gearhead
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Oncology has become very complex. One should be treated by oncologists dedicated to prostate cancer. If this is impossible in your area try to get an oncologist specialized in urogenital cancers. I believe it is impossible for an oncologist to be up to date in the treatment of all solid tumors.
May be right, but for those of us who live far from anything..(North Idaho 30 mi from Canada) we don't have many options... 8 hrs to Seattle or 10 to Portland is a bit far.. My local ( 32mi) young MO is quite knowledgeable and has known about all drugs and treatments I have asked about. This forum is great and I have run my own treatments since I started this trip, Maybe not the greatest Idea, but one that has worked so far/.
I understand, and I am not criticizing people who get treatment with a general medical oncologist because there is not any other option.
You could have annual or bi-annual consultations with an oncologist dedicated to prostate cancer. Medicare covers this type of consultations.
My local oncologist is not a dedicated prostate cancer oncologist. I consult once or twice a year with dedicated PC oncologists at major cancer centers. Most of these oncologists are doing video consultations because of the pandemic. The video consults makes everything simpler and less expensive (no travel etc.).
Sometimes these consultations are very useful, because these oncologist know about the main clinical trials done at their cancer centers and in other places. One of my consultations resulted in a Ga 68 PSMA PET/CT in 2016 which identified the mets even when CT scan and bone scan were negatives. We now know about these type of studies, but very few people in the USA knew about them in 2016.
Ditto on mine.. although he has cut back his patient load due to a great job he got in the drug industry - he still keeps a few patients he really enjoys treating and talking to. I was lucky, I'm one of the few.
In general, a specialist in urologic oncology is preferred, but I know some general medical oncologists who are very good. There is something to be said for a good working relationship. A general MO who is willing to do research, reach out to colleagues, and practices shared decision making may be preferred to a urologic oncologist who hasn't kept up with his field (it changes very quickly), who thinks he has all the answers, and is paternalistic in decision making.
I wholeheartedly agree with TAllen. The exchange between doctor and patient is extremely important to me. I much prefer seeing someone who listens, answers questions and is caring and knowledgeable. I live in Seattle, where the exchange of information about new treatments is a given. I am resistant to paternalistic doctors who only have time to give information and not answer questions.
Hey Gearhead ! ...............My urologist dxed me after almost killing me . I was elated the day that he told me that I now had Dr. Singh a prostate cancer specialist that also happened to be running a test for Tak-700 an adt drug . The uro told me that I’d do six months of chemo and that I’d live 24 months from the adt and 12 more from chemo? I asked him ,is there anything I can do to change this? He said no.. He also gave me a 50/50 shot of surviving the treatments . Some others might poo poo a specialist . But I know that this Dr Singh chose the correct path for me . I was stage#4 t-4 non op . Given 36 months by the uro ,I needed him ,his team pulled me thru hell .. I got the tubes off . But the specialist called the cancer shots .. I’m working on six years past dx undetectable still . I’m still on the Tak -700 . Nothing last forever . I’m the only one on this cite that has ever used that drug. It failed and was cancelled .. Dr Singh told me that only two of my pelvic lymph nodes were lit up on the scans . There for directed me to 8 weeks of imrt and the test drug plus Lupron . Singh first told me that I’d never see 80 . I was then 53 . A year and half later ( after shedding the tubes in my back and foley ) he told me that I have 30 years left..Either way? Who knows ? I felt blessed the day I met Singh . He’s now at Mayo ,Scottsdale .. My MO now , is also a hematologist .. but thankfully they don’t need to do anything to me right now .So I really don’t really know the breadth of his skills ? Good luck .
I had respond to this one. I know everyone responds differently and you just can't be sure which direction yours will go. But in 2009 the chief of a top comprehensive cancer center told me 3 - 5 years once the cancer came back (we all know it was never gone - just beat down for a while of course). So it came back in 2011. I still have not had treatment yet - but will soon. I changed a lot of things in the direction of my life - especially financial and job related - as a result of that "prognosis". Now I know it could have easily gone the other way quickly and if I did not change my life plans I would have wished I did - as I have seen others on this website go downwards fast and count my blessings. But I bounce back and forth on this subject. Would no "prognosis" been better then the doom-and-gloom? It did scare me into taking much better care of myself and losing 45 pounds. On the other hand it did make me worry a lot and withdraw emotionally from the family. What does everyone think? Since the "prognosis" is almost never correct (one way of the other) is it worth hearing?
You ask about asking for a prognosis. My husband is 80, diagnosed with stage 4 in October 2020. We have not asked for a prognosis. We live very much in the moment. The future will come soon enigma.
We do, however have a plan for future care and all papers are in order. But that was true long before this diagnosis.
Good luck to you. I hope this response was useful.
Thanks! It was. I am 63 - hoping to hit 80 - but shouldn't stick my head in the sand and ignore this as I have been doing. 17 years more with this disease is highly unlikely for me - but who knows? I just don't want the side effects yet - I still have kids in college and ski with them.
A generalist has to keep up with new developments for multiple kinds of cancer, rather than just one kind. So it seems to me that an MO specializing in PC might be more likely to read more papers on PC and PC treatment, and to have delved more deeply into some intricacies and newer developments, opinions, problems, etc.
But if you as a patient are doing a ton of your own work, in reading papers and listening to interviews, lectures and panels relating to all things PC, and you already have a good idea of your treatment options and how you want to proceed, then perhaps it matters less if you have a generalist.
Personally, I would want a more experienced MO whose experience is mostly in MY specific disease. This seems especially true for something like PC, that varies so much from man to man. The more men with PC a doc has seen, the more likely it would be that "this type of thing" he sees in ME (for better or worse) is something that will trigger his sense of how things are progressing.
I started with a local general oncologist, who got me going on good treatment(s) at the time, 7 years ago with a high prostate cancer disease burden and a PSA in the thousands . Over the next couple of years I traveled to consult with some top specialists about "next steps". As I got into needing secondary treatments, my local oncologist was perfectly happy to have the opinion(s) of the specialist anytime things started to change. It was a large convenience to get local labs, drugs, infusions, some imaging, and IVs very close to home, whether ordered by the local oncologist or by the top specialist. A few things I would get at the specialist's site. Most was local. After a few years of experience and some growing fatigue side effects, the physical travel to the specialist's site became more burdensome. Tele-health appointments via Zoom with the specialist in these days of COVID-19 has made some of that much easier.
(The same goes for the metastatic melanoma cancer I got about 1 1/2 years ago.)
Often times you’ll have to travel a couple times a year to see the specialist in between visits with your local guy. Just let your local know what you’re doing, they shouldn’t have a problem, if they do find one with less of an ego.
In Vero Beach. I agree. Rough to find PCa oncology specialist anywhere in FL. Excellent radiologists, yes, but the specific PCa onc specialist, no - not that I've been able to find.
I've been to Moffett but it's a 3 hour drive. And on a college campus, so it's like every prof and student is going in for a digital rectal every day. And I wasn't blown away with their "expertise." Also been to Florida Proton and Mayo in JAX.
I'll look into it. We saw a CLL specialist at Moffitt last June, decided on him over the one at Mayo JAX. What a disaster that office was. Husband is established with Dr. Kwon at Mayo RST, but after what T_A has recently written about that program, I'm rethinking that for the future. I have utmost respect for T_A.
I switched from urologist to oncologist and am very pleased. My urologist was the wrong contact person when it came to participating in studies.
When I brought up the subject of genetic testing of tumor material, I had the feeling that I was stabbing him in the back.
My current oncologist is more of a generalist. But when it comes to decisions for a new therapy, she discusses it in the tumor board. Urologists are also on the board.
I have not regretted the change from urologist to oncologist.
In my opinion, the oncologist is also the better contact when it comes to painkillers.
I’ve had both a local, general MO and a PCa specialist whom I travel to see for about 6 years now. The first specialist was Snuffy Myers who I credit with me still being alive today (that is after God of course). When Snuffy retired I was fortunate to become a patient of Oliver Sartor at Tulane, who is one of the best out there today IMO.Both work/worked together with my local MO and all three are/were acquaintances of each other which is nice. For me being a Stage 4 patient having access to a specialist has been extremely important. My local MO is excellent but since PCa is not his sole focus he is not as knowledgeable about the latest treatment strategies or clinical trials as Dr. Sartor is.
I also have a GP and cardiologist on the team, together they all work to keep kicking that can down the road. I’ll be coming up on 7 years since dx, I have a feeling I’ll need to really lean on Sartor’s knowledge sometime soon since I’m on the right side of the bell curve. Till then just trying to get one more cast in. Tight lines.
I am from Canada and I have 2 oncologist.One is a General Radio-Oncologist for my PCa and the other one is an General Haemato-Oncologist for my Lymphoma LNH. I also have an Urologist, a GP and a Pneumologist.
I do not know if we have these specialist.
I am treated in a BIG Cancerology Center in Laval.
I used to be treated in another nameless hospital but after a few screw-up I swicht to my actual center.
I have the same clinician Nurse wich we call "Infirmière Pivot" for both cancers. She is very compacionnated and even helped me to find the Special Psychologist who treat only patients with at least 2 cancers with multiple Chronic Health Diseases like me that devellope Severe Depression.
She is very good but with the COVID-19, my treatments went from every 2 weeks to every 4 weeks now. But I still consider myself lucky because with my Agressif PCa, I managed to get all my treatments: VMAT-RT 3Gy X 20 Fx in June 2020 and Lupron Depot 22.5mg/12weeks X 2.
2 days ago they top my Sertraline to 200mg.
I woke up twice last night and got up at 05:30. Took my multiple medications, then a warm bath and lay down at 06:30 and felt asleep right away for 3 hours.
No matter how good your Urologist is, my advice is to please switch or even ADD a Medical Oncologist Specialist..NOW. If I had listened to my Urologist, I would be dead by now. in 2012, He gave me 3 years left, because he did not know the oncology filed. Here I am 8+ years later on a good path in Remission, with Cancer Treatment Center of America. Wings
NOT using a PCa specialist / oncologist would suggest that you are willing to go with a 'generalist' who needs to keep up to date with far too many numerous files to be fully competent in many or most of them.
A generalist needs a bit of extra time to get up to speed as they focus on the 'recipe' of the day, that is assuming they need to wear more than one hat on an ongoing basis.
Oncology is a specialized field, no doubt, but specialists exist for a reason.
Dealing with Stage 4 of a disease would certainly make me think about rolling the dice with a generalist who is trying to put out too many fires at once.
Even the BEST generalists NEED to adapt and put in additional efforts to deal with a specific case and diseased condition.
WHY would I state this position ?
Because I was considered a 'generalist' in a very complex field. I was 'employed' in several disciplines over a span of decades.
I was successful because I would apply my skills to the task at hand - my training allowed me to qualify and become productive very quickly, because I had the background to 'adapt' and run with the ball / go with the flow quickly.
However, the task at hand and the 'project' took all of my efforts to make it a 'GO'.
A generalist will be limited on how quickly' they run with the CURRENT task at hand.
I am not criticizing myself - I was very successful and highly sought after IF they could not find the 'IDEAL' candidate for the 'job'.
I was ALWAYS employed (self or otherwise).
I'm just calling it as I see it - NOT an ideal scenario.
I have one of each. My local oncologist treats all cancers but has a lot of prostate cancer patients. My oncologist who specializes in only prostate cancer is a 4-5 hour drive but offers consultation via phone or web conference. They work collaboratively together on my case and the cases of many other patients I know.
Aside from having more experience with the specific disease we have, a big advantage of having an oncologist who does only prostate cancer is that they learned a long time ago that every single case is truly unique, and that there is no such thing as one size fits all when it comes to prostate cancer. So you are more likely to get advice that best matches your own personal case.
Think it is very important to go to an oncologist who specializes in prostate or at least urinary tract cancers. A general oncologist is good for standard cancers such as low gleason prostate, colon, and breast but at stage 4 you need a specialist
It is intuitive, given the sheer volume of new material out all the time, that a specialist in one's particular cancer would be better, and that seems to be the trend (my late wife's wonderful oncologist specialized in lung cancer); but it may be that being in a dedicated center that can handle all the possible complications of treatment might be more important. And then there's the old saw that "the definition of a specialist is one who knows more and more about less and less until they know everything about nothing" (I've heard the reverse as well). So I tend to agree with Tall_Allen (who seems to know everything about quite a lot)--that the competence of the individual(s) responsible for your care is more important than the degree of specialization.
I have utilized the Prostate Oncology Specialists in Marina Del Ray, CA since diagnosis(2015). Dr. Scholz has steered the bus since, and now has me starting on Chemo right away, yet my local MO didn't even consider nor mention it. So yes, I would recommend a specialist.
Look at it this way..... if you owned a 1962 Volkswagen Karmann Ghia would you have Mohammed Siraj repairing your car or Albrecht Wagner repairing it?......
After 5 1/2 years on AS with PCa Grade 2, my most recent PSA spiked from 10.6% in May,2020 to 18.5 this month. I have a 3T MP MRI scheduled for 2-6-21 to see what's going on and, depending on the results, i plan to find a new specialist to evaluate my case. I'm almost 81 with heart disease and Type 2 Diabetes so Im basically opposed to starting any treatment, but this sudden spike in PSA makes me inclined to at least reconsidering my situation and decisions. I have gone to Emory in Atlanta for 4 years and have not been happy with those folks. I live 50 miles from there and am looking for a PCa Specialist i can go to for my next critical case evaluation. Can anyone recommend an Urological Oncologist within a few hundred miles of Atlanta i could consider? Im 250 miles from Nashville ..and about the same from Raleigh NC and Charleston SC. Those places have Vandy, Duke and MUSC which from what i read are all pretty good Cancer Centers. Because my experience with the Emory Winship Cancer Inst wasnt good ...at least for me.. I just dont have the confidence that going with another doctor there would be different. Anyway, thanks for any suggestions.
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