That is, in your own opinion, your medical care is going mindlessly by the book, by the numbers, ignoring the context of the numbers, and you feel that your treatment is commmitted to a limited series of sucessive failures ending in hospice, and a planned giving seminar.
What do you do when you get home, and... - Advanced Prostate...
What do you do when you get home, and it dawns on you that you are getting hosed?
48 Replies
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I would consider a second opinion. Is this a medical oncologist? Have you had this conversation with him/her?
in reply to YostConner
I just him yesterday, and on reflection, posted situation here.
You can see my treatment history in my profile.
YostConner in reply to
I am confused by something in your history. Your 2015 August 03 entry says "mCRPC," or metastatic castrate resistant prostate cancer. Then in 2017 Dec, you note "not castrate resistant." Have you been on ADT the entire time? And have you remained on the alendronate noted 2015 Oct 13? You seem still to have your PSA somewhat under control, though I acknowledge you do not say what the number was in 2017 Nov. What is the new trial you want to join? It seems to me that while your disease is not curable under approved therapies, you have options and the potential for a long, happy life. I still think the key is having a medical team you trust. You're not happy with whomever you're seeing in Roswell. Was there anyone you saw at MSK or Hopkins you think you might trust?
Hit that nail, Yost.
in reply to YostConner
Because I had Testosterone supplementation, my T was high. This was interpreted as "you are not castrate" ie not T <50. If I am not castrate, the question of castrate resistant cannot be asked. This is bizarre, since no one thinks that my resistant population of cells was all killed by the JH Trial just concluded.
[Alendronate is unrelated. But conceptually yes, remained on.]
The new treatment sought is abi, plus the trial drug, a PARP inhibitor. But abi has to wait until my next nadir, PSA now 70, and presumably will fall as T falls. A three month wait, for what?
I agree with Yost. If you feel that strongly talk with your Onc. If you get a ho-hum response, definitely a second opinion and maybe change in provider.
Martin you already know what to do. You want confirmation. Bring the research to the doctor, explain it. Harp on the issue that this is the science. Prevail on the doctor that you know both of you want to extend your life. If you are talking to a stonewall; I would get another prostate cancer specialist.
I hope, you prevail.
Rich
Excellent advice. I can connect with Marty's situations. All too often, I get f*cked over with the what my PCP, my Uro's and my Onc, seems is wrong with me. A bad doc is a bad doc, but why do some of us always come across them? I'm fed up that I now have to find another primary over plain old stupidity.
As you know not all doctors are created equal. If the doctor won't let you be a member of the team, then you have to move on. I had this doctor years ago, who said; I would explain it to you, but you wouldn't understand it. He implied it was his way or the highway. I took the highway and never looked back.
Today, I like my medical team, I am able to share insights with them and discuss the issues.
Rich
I totally agree with the first three comments Martin. Seems you have lost confidence in this provider. I would get another opinion, the sooner the better. Preferably not within that practice/hospital.
Good luck, God Speed.
Being hosed seems to be my total interaction with the hospital. I have a rare form (Ductal), that outside of text books, none of my medical team ever seen. It seems like no one wants to go back to look it up.
For me I did research on the medical articles available on the open web, gave them copies, argued, argued some more and sh$t canned my first medical oncologist.
While I am getting better care than the cut and paste procedures they wanted to use, I still do not think their heart is into going the extra mile without constant prodding. It does get very tiring.
My real problem is insurance. To get any coverage I am stuck with the hospital I have now. Even with insurance, I owe the hospital and clinic a ton of money. If I went somewhere else my insurance would not cover it. I will not bankrupt my wife for my care.
Your the man, Walt! I wish I could give my insurance to all my friends here. I see a switch from Z to X real soon. Looking forward to see how long it lasts.
There are a lot of guys out there that had to fight harder than I did. Glad to here that you have good insurance. Sometimes I think that insurance companies are so hard on the doctors that they just walk around in a daze.
The thing is, we all deserve the best care possible. The issue with us is we have so many, way too many, variables in our disease. Your ductal is rare, and hard to Dx and care for. What about the men, soldiers, homeless, who are forgotten about? It's a tough life.
in reply to Dr_WHO
Prostate cancer that has invaded the seminal ducts is "well known" if a less common complication, appearing in the literature 30 years ago.
ncbi.nlm.nih.gov/pmc/articl...
Dr_WHO in reply to
Yes there is literature on it. I had to provide it to the doctors. (However, not the article you posted - thanks).
However, at about 0.4% of the cases are Ductal I was the first one with it anyone on my medical team has seen. To make it harder, it is often mistaken for intraductal (where as you say the cancer grows in the ducts). Ductal cancer is determined by the shape of the cancer cells, more of a lattice. However, I can not tell the difference when looking at pictures of Ductal vs regular cancer cells. In my case they misread the biopsy and stated it was intraductal. It was not until I had surgery that the pathology found it was instead Ductal. It took two reads of the slides to clear up that issue. Both are rare, but Ductal is harder to treat than intraductal (not that this is a contest). It does not respond that well with radiotherapy chemo treatment (but I did have radiation anyway).
Here is a note that one of my urologist sent me describing the differences between Ductal and intraductal
To answer your question, ductal adenocarcinoma is a unique subtype of prostate cancer characterized by the presence of tall, pseudostratified, columnar cells with abundant cytoplasm arranged in a papillary pattern. It often is diagnosed with a high Gleason score and at an advanced clinical stage. Ductal adenocarcinoma is rare and comprises between 0.13% to 6% of all prostate cancers. Although prostate ductal adenocarcinoma has distinctive pathologic features, its biologic and clinical significance remain unknown. Intraductal carcinoma of the prostate us a proliferation of malignant epithelial cells which fill large acini and prostatic ducts with preservation of basal cells. It is also associated with adverse pathological findings including high Gleason grade, high volume tumor and higher likelihood of extraprostatic extension by the cancer cells. They are both still treated the same and need to be treated more aggressively.
I hope this answers your questions. If you have any additional questions, please let me know.
Dr. Witherspoon
Dr. Who,
The end of the year is upon YOU, you could change insurance, (can't you?) til 12/15? (I know, today is 12/16). Have you tried that route to get coverage under another plan that will give you in-network coverage at a hospital/doctor you think you'd like?
herb
Still to young for Medicare. We looked at the Obamacare options available and, at least for us, did not like them. So for now we pay $1600/month for retirement medical from work (retired at 55) and end up going to a well known Hospital. They are a great hospital as long as you have a “regular “ Cancer. They are not that great with rare ones.
in reply to Dr_WHO
That's a tough spot, especially the financial part. I am lucky to have Medicare Supplemental and not stuck in a network. Sometimes I wonder if all doctors are afraid of lawyers and thus are reluctant to depart even slightly from the standard treatment norms. I wish you well on your continued and long journey.
The medical-industrial complex is a massive, impassive monolith that sustains itself, and moves slowly but inexorably forward, devouring everything in its path. We are not victims, but mere molecules to be absorbed, nay, devoured.
1984
Don't wait or delay. Go set up multiple second opinion appointments. And at least a few that require plane flights.
I agree, but why can't I find a good/better doc in Philly? No Mayo, no lettuce, no tomato. (Just had to type it when it came up) But a good doc at any level, is hard to come by.
No doctor cares about your life as much as you do so it's imporatnt that as long as there are treatment options available for you, you find a care provider that will provide them for you. We only get one chance to do this right. Don't hestiate to do what you need to do in order to fight this disease. Don't take no for an answer. There will be a time for all of us when we run out of options, but until we get there we should keep fighting. Find somone who wants to fight with you.
It is not a question of accepting my own mortality, if that is what you mean by disagreeing with the decision to wait. Dr Kwon says evey nadir is just another wasted chance to cure the disease, and they want to wait until my cancer becomes resistennt to Lupron, waisting any effects of the trial I just left. See my profile for treatement history if you like.
Serial failure is the approved scence based model.
Dan59 in reply to
I am sorry if I was misinformed,I am still not sure what it is you are doing ,or want to do at this time.Perhaps try zytiga or xtandi now with ADT ,which they will not let you do without the term castrate resistant, at which time the standard of care would add zytiga or xtandi at first sign of castrate resistance, which some would argue not achieving a UD PSA would make you castrate resistant. It should be no problem to get casodex, even my local MO gave when I asked 11 years ago. Dutasteride is a better drug than Proscar in that class , as it blocks more DHT, That can be had through a Urologist when you describe slower stream in Urination, it is approved for enlarged prostate,There are studies in Nw England Journal of Med out of Harvard showing better TTP with dutasteride and Ketoconazole, It is a study before zytiga , so keto was used. I have been on it for 11 years.It may still be helpful to call PCRI, Or set up an appointment with Dr Sholtz , as he is able to think out of the box. IMO D Kwon was right, My psa nadir was 3.0 a decade ago.
Email sent:
-----------------------------
Am I correct in understanding that the basis for the delay in a change of treatment or eligibility for a trial is based on the following observation?
1. Not castrate. Testosterone levels are not castrate
2. Not castrate resistant. PSA is falling.
My recap of hormone related treatment:
* 07/01/2015 - put on ADT and have remained on ADT
* 01/01/2016 - PSA somewhat less than 2, nadir
* 01/01/2017 - PSA 3+
* 11/14/2017 - Johns Hopkins RESTORE trial, shot of testosterone
* 11/16/2017 - Roswell performed a testosterone assay getting an off the chart value (1500+)
* 12/02/2017 - Left RESTORE trial, results not encouraging. PSA 50
* 12/14/2017 - Accelerated review appointment. change in treatment postponed to January 22nd
My observation:
1. We did not get a testosterone assay this visit, and so we have no idea whether my T level is <50 or not.
2, No doubt (one hopes) that PSA is falling, but we do not yet have the lab result to show this.
I also feel that unless you suspect that the percentage of castrate resistant cance cells has been driven to 0% by the RESTORE study, there is no reason to suspect that my cancer does not still contain a castrate resistant population.
Please reconsider, or prescibe something in the meantime abi, enza, casodex, proscar, metformin to try to preserve whatever good the RESTORE trial has done, assuming it may have done some good.
I do not believe that it is appropriate in my case to wait for a second nadir before commencing something beyond ADT.
Your thoughts?
leswell in reply to
There must be someone to prescribe a CAB. At least try the 5 known combo. Metformin is cheap. At least do that. Add MCP. And then plead for Casodex to add to the Lupron. You know I know nothing except what I’ve been reading. But please take action. We want you alive! Leswell’s spouse
Where to start? What to say? You are loved and appreciated, Martin. I’m so sad about your post. Jan and Les
Go to MD Anderson in Houston. They are great. I feel so confident that I get there best possible care there.
Paul
in reply to auroracham
I wonder if the MD Anderson in the Phoenix area is anywhere near as good. Anyone have experience with this facility?
auroracham in reply to
Phoenix is a franchise. My mother went to Houston 40 years ago. It is huge. It was an incredible experience. My doctor there does only prostate cancer. Nothing else. I have 110% confidence in them. They are the top cancer hospital in the US none of the last ten years. Why go anywhere else if you can afford to. It is your life.
Paul
auroracham in reply to
And I believe in teaching hospitals. My daughter is a general surgery resident at VCU in Richmond. I think that she would always work in a teaching hospital as she later specializes in trauma. I believe that they best doctors stay in teaching institutions for their career.
Paul
A private practice oncologist could be the best option (more flexibility) to avoid the massive bureaucracy of a teaching hospital like MD Anderson. My father who has been treated there for over a year has not been offered one single clinical trial for his advanced cancer. After a whole month of waiting after the 3rd biopsy for a treatment that his primary oncologist had promised might come, crickets.... the cancer in the mean time was spreading and has spread. While his Dr. seems like she tries...there is no multi-disciplined approach, she recently looked at the floor and shook her head in frustration when my father told her he had heard NOTHING from the "World Acclaimed" clinical trials department. Their multi-disciplined approach is very weak in my opinion and lacking. Now she is more open toward some of the the treatments that up till now she had turned up her nose at, that we had desperately tried to present, but now it may be too late. In many ways the "textbook" treatments he has received has been little different from anywhere else. But boy do they bring in the money....and that "Cancer" logo with the line through it looks so cool!
in reply to foreman471
Most hospitals do not push trials, especially do not push trials at other institutions, and most especially do not look at It from a patients point of view to "multi-center" the small simple early trials that are so instructional so as to quickly enroll these trials without requiring travel and overnights for medicines that are easy to administer and observe. More trials means more progress, and more small trials means faster course correction.
This (not pushing trials) is true despite NCCN guidelines that recommend consideration of trials at all disease stages. I say especially for initial stages of metastatic prostate cancer, where curative efforts are limited to trials, and those trials exclude castrate resistace - ie more than a year of ADT, typically.
One needs to search the government clinical trials for oneself, and that takes a period of familiarization, an encyclopedia, a bottle of aspirin, and a bottle of whiskey.
'
foreman471 in reply to
Your exactly right, do your research on clinicaltrials.gov and they also have a helpline where you can phone in and they will point you in the right direction unless you enjoy the bourbon and aspirin. The problem often times is of having any certainty of the efficacy of a particular trial for your particular cancer that might seem to have better outcomes, better quality of life than a standard treatment. Previous trials of new treatments often are skewered because they have small pools and improper screening. While its no problem to find something to enroll in, at the end stage of a disease making this choice over standard treatment could mean life or death. Also, when a oncologist at the the "worlds foremost" cancer teaching hospital turns their nose up, it indeed has more bearing and weight than a "local" doctor with the patient. This is what we have struggled with. All the "Institutionalized Oncologists" we have had contact with seem to still put "clinical trials" on the caboose - when all else has failed regarding CRPC.
in reply to foreman471
Many completed trials so not post results. This seems wrong.
My husband is a patient at MDA. Gone through all of SOC, looking for what's next. His Doc recommended going to Germany for LU 177 treatment with specific doc at specific
Meanwhile Excel Diagnostics in Houston has opened a Phase III trial on LU 177. Husband sent trial description to doc as an alternative to Germany trip. Current doc says "cannot even comment on Excel. Best of luck."
Now we're wondering about the private oncologist route ourselves.
The study he's investigating is at Excel Diagnostics clinicaltrials.gov/ct2/show...
Best of luck, indeed!
Take heart, it doesn't just happen for PCA. I'm going through the same thing with cardio recovery post triple bypass. Just completed the circle, back to internist-only doc I trust!
h
Sorry, but what ideas a nadir? Keeps coming up. Thanks.
Paul
in reply to auroracham
Nadir is the low value of a test number. PSA should fall to zero. If it goes to 2 and then starts back up, the nadir is 2, the lowest point. Actually of course it may have gone lower, but you missed it.
In medicine and oncology the Nadir just means "the lowest point" of a series of test results that are taken during a treatment. It might apply to a falling-then-rising trend in a particular blood count test value during chemotherapy, or, in the context of prostate cancer, it is often used in regards to the lowest PSA value obtained after trying a new treatment option.
(In astronomy, the nadir point on the celestial sphere is the point opposite the zenith point for an observer. The observer's zenith is straight up, and the nadir is straight down, i.e. also the "lowest".)
Charles
Definitely get a second (or third) opinion. When my husband was first diagnosed, we had a doc who was "by the book" and thought we should be impressed. He was 52 with Stage IV, mets in spine at diagnosis. We were not impressed. We changed oncologists. And we regularly see a consulting research oncologist from UCSF. Any general oncologist should be happy to have a consulting oncologist on board. The general oncologist sees all kinds of cancers, even though he's interested in prostate and keeps up. However, he really appreciates getting info/suggestions from the resarch oncologist -- all he does is research prostate cancer, talk to other researchers, and design clinical trials, and keep up with everything prostate cancer.
Neither of these was easy by the way. There is one oncology group in our area, and they don't like people to change oncologists (?????). Fortunately the one we wanted to change to is a senior person in the group, and there were some logistic "rationales" (location of office) that helped. For the consult, we have to fly 2500 miles 1-2x/year. There is also some online communication.
Don't give up hope. As it looks like people have suggested here, take the reins on your own care and treatment -- obviously with doctor consultation, but it's your life and your body.
Good luck and hope this works out better for you!
Did you say you are in Philly? We love our team at Foxchase. But also met with Jefferson and Abrahamson at Penn before choosing. All three were def not talking conservative treatment for us- and all three talked clinical trials and Foxchase even talked about one at Jeff after my husband finishes his 6 Taxotere treatments.
My husband is 49. We wanted to hit it hard in the beginning so liked the aggressiveness of all three places we met with. I concur with everyone here. If you think there are clinical trials or a more aggressive treatment you could be eligible for I'd go get other opinions. No matter wgat be your own researcher and present things to your docs. I keep a notebook and bring a list of questions and new (to me) things I find to every appt.
Here are studies (STAMPEDE and LATITUDE) that show that abiraterone is useful in the hormone sensitive case. That means that it is useful both in hormone sensitive and in castrate resistence, so waiting for a 2nd nadir looks like it is unsupportable.
Mailed my MO.
am.asco.org/adt-plus-abirat...
Link found via Patient Power, and Dr Neal D Shore, here
Well, I am too tired to go fight those battles with my docs, so I just send my medically literate wife there, and she uses her flying monkees to pursuade them to change.
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