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Recently diagnosed

lookingforhope50
Posts: 4
Joined: Apr 2016

Hi all,

I am now in the position where my father was diagnosed with prostate cancer with bone metastasis. The CT scan report read that "Lytic sclerotic lesions are identified in all the visualized bones icluding the proximal femora consistent with bony metastasis."  His GP was not very clear on what that  meant . He also referred to him an oncologist and urologist . He has his appointments for next week. All I understand from this and from my readings is that the cancer has spread from the prostate to the bones. He is experiencing pain in his right thigh and the GP said that this is consistent with the spread of the tumor.

Other than that all I know is that his PSA level in Dec 2015 was 19.1

I know I should wait on the specialist appointment to get further information but I feel so overwhelmed with this new development in our lives and I want to know that all will be well. I have read other posts from survivors and that has given me hope. The fact still remains that my family's life has now changed with diagnosis. We  have moved from having a peaceful state of mind to a worrisome one.

Looking forward to your responses

Swingshiftworker
Posts: 1013
Joined: Mar 2010

Sorry to hear of your father's diagnosis.

It would help to get the results of your father's prostate bisopsy but you already know that the cancer has metastasized and is in his bones.  So, he as at least a Gleason 8 and more likely a 9 or 10. 

This, as you also should already know, is VERY serious.  Prospects for long term survival are frankly minimal BUT, with proper treatment, your father should be able to survive a bit longer.  The question is what the quality of that life will be in the interim.

Not sure why the GP waited this long to refer your father to an ongologist and urologist.  This obviously should have been done LONG ago.  Was the diagnosis a surprise?  Frankly, your father is probably beyond localized treatment and is pretty much limited to chemotherapy and/or hormone therapy at this point.  

Although I've read a lot about it on this forum, the treatment of advanced prosate cancer which has metastasized is not something I have experienced and can comment on w/any authority. 

However, there are many others here who can.  I'm sure they will chime in shortly.  In the meantime,  please post more info about your father's prostate biospy, his current PSA level and his age, so that those who can will be better able to comment.

Best wishes to you father and your family.

 

Rakendra's picture
Rakendra
Posts: 198
Joined: Apr 2013

I am sorry and sympathetic for you and your father.  I, too, have very advanced bone metastesis, and was given no chance.  I am alive three years later and doing great.  My advice is usually out of the box, as you can see if you follow my previous posts.  There are two choices now for you to consider, and they are do anything for extension of life or do anything for quality of life.  My choice was the latter.  Be very, very careful here at this stage of your fathers illness.  If you choose life extension at all costs, surely, the side effects will be at least unpleasant and at most create more suffering than the cancer.  Bone cancer can be very painful.  An extended life with pain may have no point.  

      In the Western world there seems to be huge fear of death, and very little done to prepare for it.  I have no fear, because I have prepared and will celebrate death.  My, teacher, Jesus, forgave those who tortured and killed him, and all of his life he was never judgemental and taught his disciples not to judge.  So, I have no fear of being judged or punished, and will celebrate death just as I celebrate my cancer.  In other words, make the most of what you do have in this moment and let the future take care of itself.  Use this time celebrate the time you have left.  Be very careful of choosing expensive medical treatments that may not be successful, may have horific side effects, and, even if successful only extend life for a few months.

   I wish you success in your and your fathers new adventure in life.  love, swami rakendra

lookingforhope50
Posts: 4
Joined: Apr 2016

Thank you very much for your response. Your post has given me some more hope seeing that I am a strong believer in God and believe all things are possible through him.

Glad to know you are doing well and I pray this will continue for you. God has blessed you immensely and I pray that he will continue doing so.

 

Will Doran
Posts: 207
Joined: Sep 2015

Lookingforhope 50,

I'm so sorry to hear of your Father's diagnosis. Know that You and your family and your Dad are in my daily prayers.  As I have said before.  Please make sure and study as much as you can about the treatments, and be as fully educated as you can about this battle we are all in.

I was diagnosed two and a half years ago.  My PSA was 69 with a Gleason of 7, and one test as an 8.  There was no bone involvent, but after surgery they found a very small spot in one of the lymp nodes that were removed at the time of the surgery.   Thus I was diagnosed as an early Stage 4.  I had a Robotic assisted Radical Prostatectomy in Dec. 2013.  I went through 8 weeks of Radiation, and two years of Chemo (Lupron--Hormone Treatments).  So, far we have kept the cancer at bay, according to my MRI's and other tests.  So, there is some hope.  However, as Swami said, Make sure and understand all the side effects that will happen during all the treatments.  This is a long, hard battle, and we all react to the treatments in different ways.  Make sure and weigh the risks and all the side effects.  Quality of life in one's remaining time is very important.  Make sure you Dad is completely at ease with the treatments, and the possible side effects. 

Peace and God Bless

Love,

Will

lookingforhope50
Posts: 4
Joined: Apr 2016

Glad to know that you are doing well and have this vicious disease under control. How was the chemo treatment ? How did you feel following the chemo and how often was it done ?

Will Doran
Posts: 207
Joined: Sep 2015

Looking for Hope50,

You must remember that I didn't have the "Bad kind of Chemo" that is associated with cancer. At least so far.    I had 8 weeks, 5 days per week, of Radiation and was on Lupron for two years following my Robotic Assisted Prostatectomy. I started with an infusion every 6 months for the first year, and then we went to every 4 months for the second year.   The Lupron had some nasty side effects.  There are the easy ones (hot flashes, and such).  However, the worst problems I had was weakness in my legs and bone and joint pain.  I was off the Lupron for one month, and we did a bone density scan.  That showed that I had actually gained bone density in all of my bones, except for my Femurs.  That is the area that was under the radiation for 8 weeks, plus the Lupron also causes bone density to be lost.  I was just starting to feel some relief from the side effects (Muscle & Bone) and I had to go on Prolia to rebuild bone density in my femurs.  Prolia has some of the same side effects (Bone & Muscle Pain, Muscle Cramps, etc) that the Lupron had.  So, that was a step backwards.  As to the other side effects from the Lupron (hot flashes, night sweats, etc), that is still going on.  The side effects will hang on at least 4 months after going off the Lupron and can stay for up to a year. 

Best Wishes and Prayers for You and your Father.

Peace and God Bless

Will

VascodaGama's picture
VascodaGama
Posts: 3029
Joined: Nov 2010

Lookingforhope

From the data you share (high PSA, positive lesions in bone and pain), I also believe that your dad is confronting a case of metastatic prostate cancer; however, he needs to have a biopsy to verify the type of cancer (adenocarcinomas, small cell carcinoma, Gleason rates, etc). The urologist will most probably request such exam. From the results they will provide a clinical stage and recommend a treatment.
With metastases in bone your dad would become stage IV and such limits the choices in treatments, which would also depend on his age, fitness and any other existing illness.

As you may recognize, if the cancer has spread then radical approaches (surgery and radiation) done with intent at cure may be futile. Palliative treatments are more recommendable. In cases of adenocarcinomas, hormone therapies can control the advancement of the cancer during long periods of time (years) providing some quality living to patients. Chemotherapies are more aggressive in terms of nasty side effects but they also are used with success in the control of the cancer extending life.
In very advanced cases of metastases, oncologists reserve the radiation administration to attack those spots causing unbearable pain (cure therapies may be unpractical). This would occur in the cohort of patients, when close to the end of their battle.

Your father is yet susceptible to treatment so that he should be looking for ways to care about the cancer with considerations to quality of life. From data retrieved in clinical trials, experts found that combination therapies (chemo plus hormonal) are more efficient and have shown better outcomes in the treatment of stage IV patients. You dad may also discuss with his doctor(s) ways to participate in a clinical trial. These are safe and provide the benefit of using newer drugs or treatment techniques in the fight against prostate cancer. One example is the use of Radiopharmaceuticals as therapeutical means to treat prostate cancer, such as the Lutetium-177 administered with the agent PSMA-617. These are newer “bullets” showing fantastic outcomes in clinical trials to treat advanced cases.

I would recommend you to read past threads on metastatic cancer and get second opinions from various specialists, crisscrossing their suggestions and opinions, before deciding on any “move”. Prepare a list of questions and take notes as you go around. This link may help in preparing your own list;

http://www.cancer.net/patient/All+About+Cancer/Newly+Diagnosed/Questions+to+Ask+the+Doctor

This one may help you understand details of prostate cancer, prevention and treatments;

http://www.lifeextension.com/Protocols/Cancer/Prostate-Cancer-Prevention/Page-01

A good book on hormonal drugs and therapy;

Beating Prostate Cancer: Hormonal Therapy & Diet, by Dr. Charles “Snuffy” Myers

Details of Hormonal therapy;

http://www.cancer.gov/types/prostate/prostate-hormone-therapy-fact-sheet

Prostate CancerRadiopharmaceutical Therapy;

https://www.dkfz.de/en/presse/pressemitteilungen/2015/dkfz-pm-15-26-Award-winning-agent-developed-for-prostate-cancer-diagnosis-and-treatment.php

http://www.cancer.org/treatment/treatmentsandsideeffects/treatmenttypes/radiation/radiationtherapyprinciples/radiation-therapy-principles-how-is-radiation-given-radiopharmaceuticals

http://www.ncbi.nlm.nih.gov/pubmed/26222274

 

Details of Clinical Trials;

http://www.cancer.gov/search/results

https://clinicaltrials.gov/ct2/results?term=prostate+cancer&Search=Search

 

Best wishes and luck in your dad’s journey.

Welcome to the board.

VGama

lookingforhope50
Posts: 4
Joined: Apr 2016

Thank you very much for your response. I appreciate it deeply. I am looking forward to the oncologist and urologist appointments to determine at what stage we are at.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3307
Joined: May 2012

Looking,

With everyone, I am sorry you and your dad are in this bleak position.  All the guys have written with great insight and much overlap, despite differing emphases and perspectives.  PCa (prostate cancer) is usually very treatable, but some newly discovered cases like your dad's are far advanced. My experience with PCa is a little different than the others. While I have had a mild case of the disease myself, I have also followed two close friends through years of monitoring and treatment to their eventual end, death. I studied the particulars of their treatments in a lot of detail, but I have not had metastatic prostate cancer myself. Their deaths came two years ago and six years ago, respectively. While some treatments have changed or improved since then, the generalities of treatment remain similar today.

There is a 'middle way' between wanting 'quality of life' and simultaneously wanting to live as long as is feasible within a certain quality of life. All patients have to weigh and balances these issues.

What is your dad's age ? Is he clear-minded and able to make his own choices ?  It is fundamental that he be told the full truth and, insofar as is possible, make his own free choices. Doctors will give you a lot of numbers about survival times and such. Know that these are statistics, gathered from similar cases. But what any given individual will get from a given treatment can vary dramatically from others. Estimates are educated GUESSES, little more.

As some others noted, he is mostly likely going to receive hormonal therapy, unless he is deemed too far gone for HT to help. HT itself is challenging, but does in many cases give men years of life, sometimes relatively comfortable.  The final treatment option against PCa is 'chemo.'. I myself have received a lot of chemo against a different type of cancer, for which chemo was 'curative': given to 'cure' the disease. Chemo for PCa is never given for what oncologists call 'curative' effect.' Against PCa, chemo is given for 'palliative effect': to extend life and in some cases, reduce pain.  But chemo is always tough, even horrible in many cases. It varies by individual. It is usually much harsher for the elderly.

With the minimal information you have been able to share so far, it sounds like his case has poor prognosis. Undoubtedly he is far past treatment for curative effect. It is a question of how reasonably treatable he is for palliative care.  Know now that the choices will be limited and of unpredictable effectiveness. Often, a patient and doctor cannot know what a drug or approach will do until it is attempted.

Like some of the others, I too am a person of faith. The importance of that goes to the core of dealing with this.

The singer Leon Russell, back in the 1970s, had a thoughtful hit entitled 'Tightrope.' One line went,

"I'm up on the tightwire, flanked by life and the funeral pyre."

That is sort of where he is at now....

max

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