Wife of Newly Diagnosed PC patient needing advice support

Nena · Regular Joined: 05 Nov 2007 Posts: 10

Hi, I am new to this forum. My husband has been diagnosed with prostate cancer just 2 weeks ago. I need some advice here. I'll try to keep this brief. During routine yearly physical, PSA numbers were high so we were sent to a urologist who ordered a biopsy. Our urologist tells us that 10 out of 10 samples are positive but when asked what stage cancer we are facing, his answer is either 2 or 3 I don't know. My husband is then sent to get a bone scan and an MRI which reveals no spread to the bones. When asked if the cancer is in the soft tissue or any organs, the urologist's answer is I don't know. He hands us a bunch of pamphlets, tells us to read and come back in a week with our decision as to treatment. I do most of the research on the internet looking for the least evasive treatment. I read all about the Nupron shots and how people are getting sick from them, how these shots have not been proven to help stave the cancer, and all the law suits that are going on in about 10 different states for fraud so when we go back to the urologist we say we would like the surgery. He tells us he would not consider doing surgery because my husband has asthma and the surgery is too intricate. My husband is 50 and his asthma is under control. We decide on the radiation and he schedules us for Nupron. We object to it and he gets condescending with us that we are questionining his authority and/or his knowledge. He goes so far as to ask me where I got my medical degree and then proceeds to tell us that he has been practicing for 10 years and that we have no choice we have to have the Nupron. We say no. We do not want invasive treatments if we can avoid that or any experimental or non-proven drugs particularly ones with law suits. Then he goes and schedules a cystoscope procedure to scope out polyps in the urinary tract. We go to our family physician and he says he doesn't see a need for the cystoscope if we do not want that, which my husband does not want and refuses to go through.
We want to change our urologist to an oncologist, urologist says no. Family physician says yes and gives us two names. Family physician recommends surgery- cut it out and get it done with- he says. We kind of agree. If we can get clearance from the asthma doctor, we want to get the surgery and use the radiology as a second choice if we cannot get clearance.

Do we go to the oncologist or find a surgeon and if so, what kind of surgeon? What is this doctor who specializes in cancer and can operate called? Our insurance is PPO so we are limited and we need a starting point. Should we dump our urologist altogether? He is so condescending he makes my husband nervous and just ticks me off. Also, after we put up a fuss about the Nupron he goes and prescribes a pill form of Nupron!

Anyone been there done that and can give words of advice? TYIA

johnw100

Dear Nena,

Don't feel rushed into an immediate decision when you are not comfortable about it.

An oncologist consultation is good advice.
You need a top "medical oncologist" who is expert in prostate cancer.

A good medical oncologist can answer all your questions. He will be unbiased and will not be the one performing your procedure or surgery.

He can suggest treatment options which might be effective, and the side effects associated with each one.

The good major hospitals provide this consultation service by an oncologist or a panel of experts. They also have radiation oncologists and urologists should you want 2nd opinions on surgery or radiatioon treatments. If you have to travel, they might be able to arrange any consultations you want for the same day.

It depends on where you live and whether it's convenient for you to travel, you might like to choose one that your doctor has suggested if you feel confident with them, or consider one of the top hospitals like Johns Hopkins, Sloan Kettering, M. D. Anderson, Norris Cancer Center.

Books worth reading are the ones by Dr Charles Myers who used ratiation treatment and hormone treatment for his own cancer, and the book by Dr Peter Scardino who is a top surgeon.

Best wishes. Keep in touch and let us know how you progress.

Nena · Regular Joined: 05 Nov 2007 Posts: 10

Thank you so much for responding. My husband and I sure are feeling rushed by these doctors pressing us to make ill-informed decisions and choices based on their own specialties and their own agendas and that's what we don't like about all of this. Finding information (other than this website) has been nearly impossible, there is so little information out there on this. It's overwhelming!

johnw100

Yes, feeling rushed is not necessary, but it's a common problem.
Most important thing is to have a top doctor, so I hope you can find one near you or that you are able to travel if necessary.

There is a lot of information online: especially if you can obtain more information about your diagnosis, (Gleason Score from your biopsy, PSA number etc), you can post again, or get some more details on treatment options at the prostate-cancer.com site or the yananow.net site which also has mentors experiences with stories from lots of men who have used the various treatments.

The major hospitals I mentioned can also provide a 2nd opinion on your biopsy slides. Biopsy readings give the "Gleason Score" which is usually a number between 6 (the best) to 10 (which is the most agressive cancer). These readings are subjective: it's worthwhile having the slides sent for another reading, as it's one of the main considerations for treatment options and prognosis.

Feel free to ask as questions come to mind.

provenge · New User Joined: 07 Nov 2007 Posts: 4

Please read the following link. This could really be your solution. Google it. And see proofs for yourself.
http://www.cancerforums.net/about7765.html

Nena · Regular Joined: 05 Nov 2007 Posts: 10

Hi, John. Thank you again so much for answering. You guys have no idea how much you are helping us and relieving our stress over here. My husband's urologist doesn't really give us too much information. He said that my husband's score was 7 (he mentioned something about a scale from one to ten, ten being agressive. My husband is 7.) And he said that ten out of ten samples came back positive from the biopsy. That's about all we know. He could not tell us if the cancer is contained within the prostate or has spread, but he did say that the bone scans says zero spread to the bones. We are going to find a second opinion and are looking seriously into the new DaVinci Robot surgery. We have to find out if the insurance even covers any of of this, and if so, what and how much and what they will and will not approve. I appreciate the links that you mentioned and have put them in my husband's favorite places along with this website. I am trying to encourage him to post himself here and talk to you all and eventually I think he will. In the meantime, I am relaying everything you guys are advising to him. I can see by the tension draining from his face every time I tell him so and so said this or that, you have no idea how much you are helping. You guys are a Godsend.

To Provenge, I am sorry I have no idea what you are talking about and to be quite frank, I am dealing with too much right now to figure it out. I appreciate your effort, but I would rather talk to folks that have had personal experiences on the treatment options right now. All I do know for sure is that we are not having any Lupron or any other type of drug that is engaged in a law suit. Rest assured.

brainman

Hi Nena, I too am very sorry about your husband's cancer but it does sound like you are trying to make informed decisions and that is very good. As John said, you do not need to feel pressured into a snappy decision. You are already talking with an oncologist. You might also ask to speak with a radiation oncologist. They have a lot of neat weapons in their arsenal as well.

I have heard a lot of great things about the DaVinci Robot surgery. If it is available to your husband that is definitely something to consider.

If you haven't visited their site yet, a good source of easy to understand information is the NCI website at http://www.cancer.gov . Just do a search on their site for Prostate Cancer and you will have great, nearly up to date information about PC in general and even trials that NCI sponsors, if that ever becomes necessary.

The Gleason score is actually made up of two part. Do you know if your husband is a 4+3=7 or a 3+4=7? The first is slightly more aggressive than the second on and will give a better feel for how aggressive your husband and his medical team should be.

I know it is frustrating when your doctor answer your questions with an "I don't know." However, what he does know so far sounds rather good... it currently shows no signs of having spread outside of his Prostate. Unless it is clearly evident that the cancer has already spread to other organs or surrounding tissue, the doctor cannot really be 100% sure that it is contained in the Prostate, that is why he/she is giving ambiguous answers.

You and your husband are in my thoughts and prayers.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

Nena · Regular Joined: 05 Nov 2007 Posts: 10

Dear Jim, thank you so much for the link and the words of encouragement. I know that all of you can relate because you have all been through this and sharing all of your experiences with me (so I can relay them to my husband) helps us so much, you have no idea. We are getting a second opinion thanks to so much information and advice from here and I will keep you posted as to my husband's progress. We also have a radiation oncologist who is trained on a new machine called Cyber Knife, if that is the route my husband decides to go. Otherwise, he is hoping for the Davinci Robot. I'll keep you posted. Thanks!

Dalec · New User Joined: 13 Nov 2007 Posts: 3 Location: TN

Nena
I am a 45 year old that was diagnosed with advanced prostate cancer in July of this year. Please email me and I will give you what ever information I have. I went thru a failed surgery and I am now on Lupron that seems to be doing ok.

peace and grace
Dale
_________________
Dale Childress
l

Nena · Regular Joined: 05 Nov 2007 Posts: 10

Dear Dale, thanks for the reply and the information. We are in the middle of trying to get rid of our urologist and find a doctor that is trained on the DaVinci. Our family physician is strongly recommending this surgery for my husband. I doubt very much that my husband and I will ever be copacetic with having those shots no matter what happens with the surgery. We have read too many controversies involved in that drug and the fact that there are at least a half dozen states involved in class action law suits against the pharmaceutical company that makes the drug, for fraud, kickback schemes and failure of this drug to do what the makers claim it does, is enough for us to steer clear. We are counting on computerized radiation as a backup plan in case the surgery fails. I wish you the best of luck and a successful recovery with whatever treatment you choose, and I hope that everything turns out well for you! God Bless!

sequoiaranger · Posted: Tue Nov 13, 2007 1:04 pm Post subject: You Are In Charge!

I firmly believe that the PERSON is in charge of his/her own treatment and has the absolute RIGHT to refuse treatment or switch doctors. From what you have said about your urologist, he seems way too "possessive" of your husband and his treatment. Bad sign, in my opinion, and MOST un-professional. Most professionals would be willing, if not eager, to work with another professional for the PATIENT's benefit. Second opinions are ALWAYS valuable, but remember that the man with two watches never knows what time it really is--that is, if you get a second opinion differing from the first, where are you??

Anyway, my urologist (who did my prostatectomy) had a computer program from John Hopkins University that could take various parameters from biopsies and data and, by comparing those numbers to a huge database of real cases and their results, come up with some revealing probabilities on what was most likely happening with the tumor. That is, in my case he said that the prostate tumor had most likely pierced the prostate wall (proved true), likely infected the seminal vesicles (proved true), but not likely had metastasized. The last item was confirmed by a cursory pre-prostatectomy examination of lymph nodes, but a later, more careful examination found a few loose cancer cells. So the "metastasis" prediction was "wrong", but only barely, as my cancer apparently had JUST metastasized prior to my operation (if the cancer cells had been discovered in the immediate pre-surgery phase, the operation would not have been undertaken, but I am glad to be rid of that ***THING*** maliciously growing in my body.)

I have not heard of lawsuits pending over "Lupron" or such. I had taken "Eligard", similar to Lupron, and it worked WONDERFULLY for a short period. For some unknown reason, it stopped working, and I am presently trying to find out why. There was a Lupron scandal a few years back involving placebo doses (so SOME unscrupulous person could make a profit on this expensive drug), and I believe my father's advanced prostate cancer gained a foothold because of it (and died). I have had no ill effects from the "Eligard" except a drop to zero of my libido--COMPLETELY lost all interest in sex, intimate touching, etc (very sad, but "life-giving" if it suppresses the cancer as well!).

If you haven't learned by now, cancer is really tricky and SO MUCH is unknown about it and the body's response. It is about half "art" and half "science" right now. Your urologist seems not much of an artist or scientist right now. I had to get rid of my former urologist, too, for being way too much "old school" (less complete biopsies and sloppy follow-up procedures with staff) for my unusually aggressive cancer.

Best of luck.

Nena · Regular Joined: 05 Nov 2007 Posts: 10

Dear Sequoiaranger, Wow! I just printed up your post above and am going to bring this with me to the new doctor that has agreed to take my husband's case. He is going to review all the medical reports and figure out what stage my husband is in (says that if he has to send him for further testing so be it and we agree). He is trained on the DaVinci Robot and got his medical training in Sloan Kettering out in New York. We should be seeing him within the next 3 weeks. I agree that our urologist is not motivating himself in the best interests of my husband and needs to be replaced. Anyway, we feel alot better dealing with a prostate cancer specialist rather than a urologist anyway. Thanks for the information as at least now we have some help here. Before this forum, we were literally in the dark! God bless!

sequoiaranger · Posted: Tue Nov 13, 2007 2:24 pm Post subject: DaVinci Robot, etc.

I have heard of, but not informed of details of, the DaVinci Robotic techniques. I had asked my urologist/surgeon about it, but he said in my case that wasn't the best idea (right now I have no idea why). My "style" of operation was "Radical Retropubic Prostatectomy" and my abdominal muscles had to be cut (causing much pain and post-op discomfort and slow healing) rather than operating from the pelvic floor upwards. I'm not sure if the "Robotic" method goes through the pelvic floor or not.

Because my cancer was so large and aggressive ("T-3" with Gleason 9+) he wanted to sweep out the whole area around my prostate to get out any stray cancer cells in the immediate area. He didn't want to take chances on missing anything as long as he was "in there" anyway. It turns out that the cancer had already metastasized, but the idea was sound.

I am glad you found my information useful.

brainman

Hi Nina, the Cyber Knife is not actually a new technique. It has been around for years. However, the DaVinci Robotic Surgery is new. I have heard great things about it. But you are wish to try to find someone with experience using it successfully.

Before totally ruling out chemotherapy, you might want to talk with your husband's oncologist and ask about your husbands prognosis with and without treatment and how chemotherapy will effect his quality of life.

You and your husband continue to be in my thoughts and prayers.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

Nena · Regular Joined: 05 Nov 2007 Posts: 10

Sequoia, Thanks for sharing your experiences. We were just talking about this very thing, we have no idea at this point if my husband's cancer has spread, or even what stage it is definitively. I guess we will talk about all of these things with the surgeon that is taking over my husband's case who will be seeing us for consultation in about 3 weeks. It's good to know your experiences too because at this point for us, nothing is written in stone. We were never told a T number or a Gleason, the only numbers they told us were "stage 2 or 3, I'm not sure" and "10 out of 10 slides are positive" and "you are a 7 on a scale of 1 to 10" what ever any of that means. This is the reason we are dumping our urologist. You can't get a straight answer from this guy, except that he is hepped up for pushing Nupron shots and hormone therapy.

Brainman: I hate to think of my husband going through chemo and we sort of discussed it and made an agreement that if either of us were faced with chemo we would both pass on that, even if that was the last resort. We made a pact that we would not let each other go through that. I don't even like to think about that.

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