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advice on which way to go - oncologist or urologist? HT length?

iowahawkfan
Posts: 7
Joined: Sep 2012

I posted earlier this month about my friend. He is 81 years old and has stage 4 prostate cancer, gleason score 8 and many, many bone mets. We actually found the cancer due to his collapse from renal failure - the prostate has blocked his urethea tubes and he had to have bilateral nephrostomy tubes inserted. He was in the hospital for 10 days as they got him stable and has spent the last 20 days in a care facility getting physical therapy. He is getting released to go home tomorrow with home health care coming in to help him. Yay!!!!

Yesterday we had appointments with an oncologist, a urologist and his nephrologist. His kidney function has improved but it will never be "normal". Due to this, he can't take zometa or these kind of drugs to help with his bone mets. They said it would just be too hard on his kidneys at this point in time. They also said that they feel his bladder/uretha are too damaged to recover and he will have to have the nephrostomy tubes in for the rest of his life. They don't seem to bother him too much but he does have a lot of pain in his lower back.

So here is my questions - Doyle HATES and I do mean hate, doctors! He had not seen one in over 20 years and he collapsed before getting help with his current situation even though I had been urging him to go for months. Yesterday, he physically got sick in between each appointment, he was that nervous. I am trying to limit this anxiety for him by limiting at least one appointment and during our interviews yesterday, it sounded like both the oncologist and the urologist would be doing/recommending the same treatment path of lupron depot shots with a casodex daily pill. Both doctors were equally good with him but he said maybe two words (let me do all the talking - didn't hardly answer their questions). If you were going to choose just one doctor to go see, which one would it be?

Also - both urologist and oncologist thought depending on how Doyle responds to the shot (his only side effect so far is hot flashes and we re-check his PSA next week), they thought anywhere from 6-24 months before he became hormone resistant to the treatment. He has said he will only do this treatment, he wants no chemotherapy, surgery, or radiation. I have never heard these kind of numbers - if anything I have heard the opposite - years and years of success. It could be that his is just that far advanced that they do not expect long term success or that the complications from his renal failure/prolonged damage since he didn't seek treatment earlier. Are there others on this board who have seen this kind of advanced cancer?

The good thing is that he is coming home! He is in much better spirits and he says that his leg (where he had a very large tumor) is feeling much better. I take this as an excellent sign of his responding to the hormone therapy in a good way. I couldn't be more pleased and just hope it continues. I am worried about him living alone and with me two hours away but I have lined up a life alert and have arranged from home health nurse to come in daily and help him.

I certainly appreciate all your help and advice through this last month. You guys probably don't even know what I help you have been! I realize as a woman, I have absolutely no concept of what he is going through and reading many of your comments and posts have helped me have a greater understanding of this disease. For that, I thank you and wish you all nothing but the best on your own journeys . . .

Samsungtech1
Posts: 350
Joined: Jan 2011

Iowa,
Had a friend of mine in Chihuahua, he is a miner, collapse. Turns out he had metastic prostate cancer. It was in his bones, etc. He is on HT, casodex, and radiarion. When he started he could not walk. He is walking, with a walker, but is much stronger. They gave him 3 months, he is still here and doing well.
If he does not want anything but HT he will probably be in alot of pain. Bone mets are really painful. They use radiationmto kill them and reduce the pain. When it gets bad enough he might rethink hismtreatment plans. There is nothing nice about this. If he likes pain he should be happy, but I would suggestmhecheck out radiation.

Mike

hopeful and opt...
Posts: 1304
Joined: Apr 2009

Since the cancer is outside the prostate, my layman's opinion is thazt Doyle would do best with a Medical Oncologist, hopefully one who specializes in prostate cancer. Try to find the :best" Medical Oncologist thatyou can to improve his outcome ... Medial Oncologists specialize in hormone and advanced case treatment type.

There are several type hormone drugs, aside from lupron and casodex. If Doyle becomes resistant to these drugs, I am hopeful that there are others that he could could take, some of which are very high tech. To be perfect honest, I am not knowledgable about the best seaquennce for hormone therapy. Ileave that to the Medical Oncologist. There is an other at this site who is very knowledgeable about hormone therapy, ..Mr. Vasco DeGama.

I do know that many men who are treated live for several years.

In my layman'sopinion, other prostate therapys are not appropriate

I wish you and Doyle the best

VascodaGama's picture
VascodaGama
Posts: 1543
Joined: Nov 2010

Iowah

I am very glad for seeing you so involved in Doyle’s care. You surely are trying the best and he is fortunate for having someone to rely on.

Sincerely I think that doctors/specialists should be “chosen” for what they are good and needed for. The advanced status of Doyle will require several specialists along his journey. For the prostate cancer and metastases probably an oncologists specialized in targeted medication (hormones and medicines for the side effects) is the best as his “main” physician. The urologist and others may be needed to follow up any aspect regarding the kidneys and other conditions he may come across.

Doyle will relax once back to the comfort of his home. The daily nurse’s service is a wonderful idea. He will require constant vigilance of lipids (in particular for anemia) and he needs to take the medication as recommended. Hopefully the nurse does his/her job properly.

Doctors may be right regarding their opinion on hormone resistant. However the cancer in Doyle’s case is responding and such could continue for more than two years. It all depends in the type of cells (grade of cancer) and their ability in surviving an environment without testosterone. I hope that the response is long. In any case they have changed from their initial statements regarding “time”, and I like to know about that.

The drug’s effectiveness can be better controlled through PSA and testosterone tests. The PSA will verify the response to cancer and the testosterone will verify the effectiveness of the drugs. Doyle should be tested for both periodically. The same sample of blood is used to do the tests including the lipids.

If the PSA increases the oncologists may increase the Casodex potency (50 to 150 mg/day) or change to other drugs or protocols. In the future Doyle will have to subject to intravenous medication for controlling pain. This is the worse aspect in prostate cancer treatment and affect. Maybe Doyle will consider from time to time in having spot radiation to bone tumours for alleviating pain. Radiation is done in a matter of few minutes, simple and pain less. In some centres they do the image/”photo” study to locate the spots and deliver the radiation at once.

In my lay opinion, traditional chemo therapy does not alter or give better moments of living in advanced cases. Newer drugs for androgen ablation named as second-line HT are better and cause lesser side effects as seen from trials.

You will have to discuss the matter with the oncologist and you should inform him about Doyle’s wish in having no traditional chemotherapy. This is important to be discussed at this timing because the doctor will have to establish a protocol for his future care.

Please note that I have no medical enrolment. I have a keen interest and enthusiasm in anything related to prostate cancer, which took me into researching and studying the matter since 2000 when I become a survivor and continuing patient.

I believe that Doyle will be here and enjoy the moments of his life if he manages to control the pain and lipids. Diet is also an aspect he should care for. Other health issues should be followed accordingly (heart, liver, etc)

Your posts are wonderful and I hope that you get the peace of mind you deserve.
You can’t do better.

Regards.
VGama

iowahawkfan
Posts: 7
Joined: Sep 2012

Thanks Vasco -

The change in Doyle's timeframe is simply from his change of heart to have any treatment at all. I had to beg him to allow the lupron shot and casodex while he was in the hospital. This has been a really rough last couple years for us. My beloved mother, and Doyle's long term companion, died December 31, 2011 from colon cancer. She was diagnosed with stage 2 colon and stage 3 breast cancer with the HER/2 neu gene mutation in August of 2010, they treated the breast cancer and she had an awful time with both the chemo and the radiation. We actually had to stop her radiation treatments due to her having deep wound penetration that covered 30% of her chest. She took her last treatment in June of 2011 and in July was diagnosed with a different type of colon cancer again. . .they did surgery but a month after when she was to start chemo again, they had told her the cancer had spread throughout her abdomen and gave her 6 months to live. She survived approximately 3 months and died a horrific death in hospice. Trust me, my mother did not go gently into that good night.

Had I known then what I know now, I would have never put her through the treatments as she was absolutely miserable having numerous bad reactions. My mom was a fighter her whole life and she wanted to live so badly for her kids and grandkids but it was not meant to be. Doyle has suffered greatly since her passing, being depressed and has become anorexic. He has truly wanted to join her in heaven. I feel very guilty about this but I begged him to fight for me. I just couldn't lose him too. Having the doctor assure us of the relative benign side effects was the only thing that convinced him to try. There is no way he will do chemotherapy or radiation.

He agreed for these two treatments to see how they would go. They prescribed him an antidepressant which I think has helped his attitude and he has regained some of his strength from the physical therapy. I am just not sure how long he will continue to fight this disease though. I spent all day in the kitchen making his favorite meals and trying to get him to regain his appetite but he only eats a few bites of anything before he says he is full. He is 5'5 and weighs only 116 lbs. Keeping the weight off will help his weakened bones but he needs the nutrition to fight off infection, keep up his strength and to fight this battle.

I am hoping his PSA test shows a lot of improvement and that he continues to have few side effects from the drugs. He has some obvious concerns with his kidney function and he will need to be very viligent against infection in his nephrostomy tubes. He has to keep up with his physical therapy and he needs to eat. I think if he starts having a hard time with those, he will refuse treatment and go right into hospice. His willingness to fight will hinge on these few factors and right now, I feel it can go either way. I will continue to pray and do everything I can for him. It was my mom's last request to take care of him and I will not let her down now.

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