Medical Forum / Diseases and Disorders / Prostate Cancer / October 2004
Conflicting "expert" opinion
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Gareth Jefferson - 21 Sep 2004 20:32 GMT Hi Group,
C. Palmer, a regular contributor to this group, will be thoroughly familiar with the following, thru private correspondence. I have to say he is the most wonderful guy, and has been a tremendous support and help to me thru difficult times.
After a pelvic MRI, I had conflicting reviews from my oncologist and urologist. The Urologist said that he thought the pelvic lymph nodes were not seriously involved, and that Radical prostatectomy coupled with radio of the lymph nodes in my pelvis might offers some real hope for improvement.
My Oncologist, on the other hand, said that the involvement of the lymph glands was beyond doubt and that only palliative care could be offered.
I have asked for a second oncologist's opinion, but have not yet been favored with an appointment.
My first, fatalistic, oncologist said that in her view my PCA cells were of the type unlikely to respond to testosterone deprivation. Mr. Palmer, who knows a lot more about all of this than I do, suggests that PCA cells that do not respond to testosterone deprivation are very slow to develop.
I have been put on testosterone-blocking drugs that supposedly deprive my body of testosterone and my mind of any interest in sex. The first may have happened, but the second has happened only to a degree. I still find attractive people attractive, but I have no idea what I would be able to do, or even want to do, if ever I had the unlikely opportunity to do anything with them at all. Nothing, is what I suspect. It's funny how the sex performance drops off before the residual interest therein. Strange, huh?
To by told by one "expert" that nothing more can be done for me, and by another "expert" that RP and radiotherapy might be helpful does not help my state of mind, which, as you all will recognize, is currently in a predictable mess.
Regards to the whole group, and especially to all those who answered me either privately or thru the newsgroup.
Kindest regards to all,
Gareth Jefferson.
jimhoney - 21 Sep 2004 20:47 GMT I have to admit my ignorance here. I have never heard of this diagnostic procedure, pelvic MRI of lymph glands. How does the oncologist know that the lymph glands are involved?
jimhoney
Outlivecancer - 22 Sep 2004 01:59 GMT He doesn't just checks during surgery.Lymph glands number in the hundreds and are one of the body's filtering defenses against cancer.Notice how more serious lymph node involement is with breast cancer.
Danny McCarty - 22 Sep 2004 02:17 GMT >Subject: Re: Conflicting "expert" opinion >From: outlivecancer@aol.com (Outlivecancer) [quoted text clipped - 5 lines] >serious >lymph node involement is with breast cancer. There is one particular lymph node close to the prostate. During surgery, it is removed and examined. Usually, if cancer is found in it, the surgery is discontinued and the the patient is closed up. In -any- metastatic cancer, cancerous cells will be lodged in the lymph nodes early on.
jimhoney - 22 Sep 2004 02:49 GMT > He doesn't just checks during surgery.Lymph glands number in the hundreds and > are one of the body's filtering defenses against cancer.Notice how more serious > lymph node involement is with breast cancer. But Gareth's oncologist says she already knows there's cancer in the lymph glands. My question is how exactly does she know that when the urologist doesn't?
I don't want to tell Gareth what to do, but if it were me I would say goodbye to both oncologists and let the surgeon get cutting.
jimhoney standard RRP age 52, cured, no significant aftereffects
Alan Meyer - 22 Sep 2004 06:06 GMT > > He doesn't just checks during surgery.Lymph glands number in the hundreds > and [quoted text clipped - 5 lines] > glands. My question is how exactly does she know that when the urologist > doesn't? Jim,
I'm not an expert on this, and anyone who knows more than I do should certainly jump in and correct my errors, but here is what I think happens.
I had extensive MRIs taken before my radiation clinical trial. The doctor showed me the images constructed from the magnetic imaging data. The tumor in the prostate was startlingly clear. It showed up as a big black mass in the images. The resonant frequency of the tumor was different from the resonant frequency of the healthy tissue and it showed up in the computer synthesized image as black.
She also showed me the MRI scans of the lymph nodes and other surrounding tissue. There were no black spots in the images - which, as I understood it, meant that there was no obvious MRI evidence of lymph node involvement.
I say "no obvious evidence" because, if I remember correctly, the MRI images are only accurate down to about .5 millimeters. If the tumor spots were smaller than that they would not show up. But if they were larger, and they were sufficiently differentiated from the surrounding tissue, they would show up.
The MRI makes its images in slices or layers. It's also possible to miss evidence of cancer because the slices were not positioned correctly.
Now, if the black spots (or whatever color the computer was programmed to synthesize) showed up in the MRI at the expected frequency for tumor tissue, then the doctor had evidence of cancer in lymph nodes. If not, she does not _know_ there is no cancer in the lymph nodes, but it is not obvious to her that there is cancer there.
> I don't want to tell Gareth what to do, but if it were me I would say > goodbye to both oncologists and let the surgeon get cutting. I would talk to a radiation oncologist, show her the MRIs, and ask if 1) she thought they showed cancer in the lymph nodes and 2) could she reach it with radiation?
If the answer to both is Yes, I think I would skip the RP and go straight to radiation. The reason is:
1. We would already know that radiation is required. Why suffer the trauma from two kinds of treatment? Why not just suffer one kind?
2. Administering radiation immediately after surgery might be problematic. If the radiation hits the healthy tissues already damaged by surgery - which it will - it may cause healing problems. But if the patient waits for healing to complete, the radiation will be delayed and the cancer in the lymph nodes go untreated.
Of course everything I've just said is the uneducated speculation of a layman. It may be wildly wrong. But it seems reasonable on the surface and, if I were the patient, I'd ask my doctors to explain why this reasoning is wrong if they think it is.
Finally, I would say that I agree with the spirit of what you, Jim, are saying, namely that if there is a chance of a cure, go for it. But I really would like evidence that there is a chance for a cure. I'd rather die of cancer without having had major surgery than have major surgery and then die just as quickly anyway.
Alan
Lorelei - 21 Sep 2004 21:07 GMT > Hi Group, > [quoted text clipped - 38 lines] > > Gareth Jefferson. you have our sympathies. (lori and curt). Best wishes in whatever you decide. Curt got the "palliative" only prognosis from the only Onocologist that he has seen. I am glad that you have been seeking more than one opinion. hope things go well for you
 Signature Lori Devoted wife of Curtis, Stage 4 Prostate cancer at age 40 PSA 865 Dec 30,2003 44 Feb 23,2004 17.3 Mar 15,2004 18.9 Apr 16, 2004 17.3 may 15,2004 14.59 =))) July 10, 2004 Next set of tests scheduled for Sept 30. Bone scan, MRI, PSA, CT Results to be known Oct 5. mets to bone and lymph Lupron Q3months Casodex 50 mg daily Zometa qmonth http://community.webshots.com/user/lorismiller
Me - 22 Sep 2004 04:44 GMT > Hi Group, > [quoted text clipped - 5 lines] > My Oncologist, on the other hand, said that the involvement of the lymph > glands was beyond doubt and that only palliative care could be offered. 1. To echo what someone else has already said ("I have never heard of this diagnostic procedure, pelvic MRI of lymph glands. How does the oncologist know that the lymph glands are involved?"): My surgeon said it is impossible to determine lymph node involvement on the basis of a CT scan -- MAYBE (but it could be doubtful too) they can see the lymph nodes on an MRI much better, but I was led to believe you don't know about lymph node involvement until they cut you open, remove some lymph nodes, and examine them under a microscope. 2. As I replied to your earlier post: "WOW - you REALLY need to get another opinion on the MRIs!! You should go to wherever you had the MRI done and get a copy of the images in your hand and find yourself another pathologist and/or oncologist to read them. ... have SOMEONE ELSE read the slides!" I do not know where you live, but if not in a major metropolitan area it might be worth traveling to Sloan Kettering or Johns Hopkins or elsewhere. For example, you can lookup Sloan Kettering docs on their web site and call (you can begin at http://www.mskcc.org/mskcc/html/8616.cfm).
Lorelei - 27 Sep 2004 19:54 GMT > My surgeon said it is impossible to determine lymph node involvement > on the basis of a CT scan -- MAYBE (but it could be doubtful too) they > can see the lymph nodes on an MRI much better, but I was led to > believe you don't know about lymph node involvement until they cut you > open, remove some lymph nodes, and examine them under a microscope. Curt was originally diagnosed with "some type of cancer" the first day because they did a CT of his abdomen to r/o bowel obstruction and saw the edge of his pelvic lymph nodes then scanned him to the neck and found them in his upper chest. (he thought it was his heart hurting, but it was the huge lymph nodes) So at least in Curt's case, they were found by CT. HTH
 Signature Lori Devoted wife of Curtis, Stage 4 Prostate cancer at age 40 PSA 865 Dec 30,2003 44 Feb 23,2004 17.3 Mar 15,2004 18.9 Apr 16, 2004 17.3 may 15,2004 14.59 =))) July 10, 2004 Full set of scans to be redone and compared Sept 30. results to be know Oct 5 mets to bone and lymph Lupron Q3months Casodex 50 mg daily Zometa qmonth http://community.webshots.com/user/lorismiller
Alan Meyer - 22 Sep 2004 06:14 GMT > ... > I have been put on testosterone-blocking drugs that supposedly deprive my [quoted text clipped - 5 lines] > performance drops off before the residual interest therein. Strange, huh? > ... The effect of the drugs grows over time.
For the first couple of weeks after a Lupron injection there is a "testosterone flare" that may actually make you more interested in sex than before. Then that tapers off.
I found that by around 6-8 weeks, my interest in sex really tanked. I was still capable of having sex, and I did it, partly because I still wanted to try to satisfy my wife, and partly because I feared a sort of "use it or lose it" effect and I was hoping my interest would come back in the future. But the experience was more psychological and less physical than it had been in the past.
I'm not on Lupron now and, when the drug wore off, my interest returned. It was a real lesson in how the things that you consider to be core parts of your personality can be turned on and off by trace amounts of chemicals.
Alan
Bill Denton - 22 Sep 2004 15:45 GMT Gareth, I think your oncologist is assuming that PCa in lymph nodes means that you are already systemic or probably are, and that no local treatment is going to cure you. Of course, that may be a faulty assumption and RT might knock it out before it has spread. I believe you can have lymph nodes biopsied independently of surgery so you might ask about that if that is going to make or break you. Also, even if you have systemic disease, you also have local disease so local treatment might give you a fairly lengthy "remission," especially w/ HT too. However, all of us amateur docs would need to know your PSA, pathology, etc. to give better advice.
Bill Denton RP 2/12/02 Memphis
CB - 02 Oct 2004 06:10 GMT Hi Gareth,
When my father, then 78 years old, was first diagnosed with PCa in 1998, we brought him to the U.S. to see a doctor at the Memorial Hospital, in New York City. But since we were unable to confirm the appointment before we left from South America, we also arranged a visit to a cancer hospital in Detroit. At the Memorial, the doctor said he should go straight to RT. Then, maybe, to chemo. But since we had already booked the trip to Detroit, we decided to get another opinion. In Detroit (sorry, but I forgot whe hospital's name), my father was seen and examined by a doctor who, not knowing about the previous opinion, said he should do hormone therapy only.
We had the luxury to be accompanied by my cousing, who, although from a totally different medical field (he is a children's surgeon), is the kind of doctor who keeps himself informed about everything, he will go to international conferences every year etc. He didn't like the idea of hormone therapy, which he labeled "sleeping with the enemy". It won't (try to) cure the cancer, but only postpone its recurrence. He mentioned the Memorial doctor opinion in favor of RT, and the doc from Detroit then said he would convene other two doctors to give their opinion. The second doctor defended the hormone therapy, citing my father's age and the likelyhood that he would be dead anyway within the next several years that the hormone therapy would supposedly last. A third doctor, a radiologist, came in and insisted that we send my father to radiotherapy, citing his overall well-being apart from the cancer itself, and his family history of longevity (my grandmother and her sister lived to over 90, their only brother died much younger, but from a liver disease).
The reality is, it seems, that doctors do disagree, based upon how they interpret exams' results, how they consider several other health-related recovery factors etc., but also because of differing views of medicine, well-being and life.
My father didn't want to do the radiotherapy at first, given the conflicting medical suggestions we received, but changed his mind when his PSA (back then controled with hormone therapy in somewhere around below 5), started to jump up. He did the RT and the cancer apparently went away, but only to return, with metastasis, in 2002. But during his years he held a relatively normal life -- eating regularly, walking around the house, stubbornly driving his car, and even drinking his one or two shots of whiskey every Sunday. This condition lasted untill late 2003, when his health started to deteriorate.
My father is currently 85, with a PSA above 1,300, and being treated both with hormone and chemotherapy. He is taken care of by a nurse and by my mother -- who, like every other mother in the world, is the best mother in the world! He now needs their help to get up, to go to the bath, to move around the house and pretty much everything else ... except to talk to us and to smile when he sees his children and grandchildren and when he hears about his first great-grandchild, Maria, expected to be born in January 2005.
So, as you see, conflicting opinions are part of the game, doctors may know a lot, but don't know everything. My suggestion is that you do hear a third opinion and then take whathever seems to be the most optimistic and "you can do it"-like of them.
I pray for you to get over this!
CB
> Hi Group, > [quoted text clipped - 38 lines] > > Gareth Jefferson. Danny McCarty - 02 Oct 2004 18:26 GMT >Subject: Re: Conflicting "expert" opinion >From: "CB" SPAMNOT:cb.net@verizon.net >Date: 10/2/2004 12:10 AM Central Daylight Time >Message-id: <dLq7d.2385$L91.862@trndny01> Gareth, Prostate Cancer treatment is a matter of trial-and-error, mostly. Presently, my doctor is testing whether I am one of the 25% whose PCa regresses when Casodex is stopped. If the PSA keeps going up, we try something else. More than palliative care can always be offered- we can always look for something that will actually make us live longer rather than merely make us more comfortable while we die. They might actually come up something that resembles a "cure", if we can hold on long enough...
>Hi Gareth, > [quoted text clipped - 105 lines] >> >> Gareth Jefferson. Gareth Jefferson - 25 Oct 2004 17:20 GMT Thanks again to everyone who has responded, especially CB.
I have had a bone scan and it appears to be clear. My current oncologist is recommending radiotherapy -- why, as opposed to RP, is not clear as I'm only 60. I guess his decision is based on the possibility that the cancer has metastasized to my lymph nodes. My MRI did show an apparent 1/2 inch growth in my right pelvic lymph node which they first thought was a secondary; they now appear to think it is a calcium deposit. They seem reluctant to do an independent pelvic lymph node biopsy.
Kind regards to all in this group,
Gareth.
Danny McCarty - 25 Oct 2004 19:47 GMT >Subject: Re: Conflicting "expert" opinion >From: Gareth Jefferson atug17@dsl.pipex.com [quoted text clipped - 14 lines] > >Gareth. The radiation will kill the cancer in that lymph node, if there is any there. The swollen lymph node may have just tipped that scales a little- since if surgery had been done the lymph node would have been removed and examined and the surgery discontiniued if any cancer was found therein. They just removed two lymph nodes from just below my heart and found PCa tumors in them. Now I get to enjoy another round of chemotherapy.
gourd_dancer - 28 Oct 2004 07:40 GMT Danny, what day is your chemo on? I go on Tuesday's...
Spent yesterday doing re-staging scans and blood work. Today I met with our Doctor. No disease progression after 16 weeks as expected. The concern is that chemo dropped the PSA from 3.0 to 1.0 after the first cycle ( which was real good). PSA still at 1.0 after the 2nd cycle. He thinks a recessive gene is the culprit. Anyway, start 3rd cycle on Tuesday with PSA every 4 weeks for at least the next year instead of the normal testing regime of 6 months....
Mike
> >Subject: Re: Conflicting "expert" opinion > >From: Gareth Jefferson atug17@dsl.pipex.com [quoted text clipped - 21 lines] > two lymph nodes from just below my heart and found PCa tumors in them. Now I > get to enjoy another round of chemotherapy. Danny McCarty - 30 Oct 2004 01:04 GMT >Subject: Re: Conflicting "expert" opinion >From: "gourd_dancer" mnospam@sbcnospamglobal.net >Date: 10/28/2004 1:40 AM Central Daylight Time >Message-id: <tv0gd.17247$5b1.3161@newssvr17.news.prodigy.com> Mike, the new sequence has not been started yet- they gave me time to recover from the lymph nodes removal. I get to see the PCa doc and the thorathic surgeon this Monday, the day before the election... and find out more about the chemotherapy then. I'm praying my PSA has actually gone down a lot, as they expect...
>Danny, what day is your chemo on? I go on Tuesday's... > [quoted text clipped - 41 lines] >Now I >> get to enjoy another round of chemotherapy. gourd_dancer - 30 Oct 2004 04:13 GMT My prayers are with you also.
> >Subject: Re: Conflicting "expert" opinion > >From: "gourd_dancer" mnospam@sbcnospamglobal.net [quoted text clipped - 51 lines] > >Now I > >> get to enjoy another round of chemotherapy.
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