Re: Spread to Lymph Nodes

[Guest guest]

Clare

Sorry to hear your news, we have great empathy with you and your family and your father.

What hormone manipulation therapy is he on?

Spread to Lymph Nodes

Hi all, I'm a long time lurker whose father was first diagnosed 3 years ago. Dad's psa level on diagnosis was 19 he had radiotherapy and continues on hormone therapy. He was given the all clear and told not to come back for a year, however we decided to have a psa test halfway just for our own piece of mind and has levels were raised, 5, since then (3months or so) they have continued to rise to the current level of 29. They are not so concerned about that as they are about a large lump that has developed on his neck which they are saying is prostate cancer that has spread to the lymph nodes there. He is having a biopsy today and is already booked in for radiotherapy next week but I just wondered if anyone else has had any experience of this? I have to admit that we are all pretty scared and my own fears are if its spread to there could it be somewhere else (we will know that answer next week as he has had a number of scans)Sorry to have waffled on and I hope I have given enough background info that someone will be able to reply. I'm just feeling lost right now, which I'm sure is a feeling most of you and your families have felt.Wishing all light and love, Clare

[Guest guest]

Mal wrote:

> Hi all, I'm a long time lurker whose father was first diagnosed

> 3 years ago. Dad's psa level on diagnosis was 19 he had

> radiotherapy and continues on hormone therapy. He was given

> the all clear and told not to come back for a year, however we

> decided to have a psa test halfway just for our own piece of

> mind and has levels were raised, 5, since then (3months or so)

> they have continued to rise to the current level of 29. They

> are not so concerned about that as they are about a large lump

> that has developed on his neck which they are saying is

> prostate cancer that has spread to the lymph nodes there. He

> is having a biopsy today and is already booked in for

> radiotherapy next week but I just wondered if anyone else has

> had any experience of this? I have to admit that we are all

> pretty scared and my own fears are if its spread to there could

> it be somewhere else (we will know that answer next week as he

> has had a number of scans)

>

> Sorry to have waffled on and I hope I have given enough

> background info that someone will be able to reply. I'm just

> feeling lost right now, which I'm sure is a feeling most of you

> and your families have felt.

>

> Wishing all light and love, Clare

Clare,

It appears to be pretty certain that your Dad's radiotherapy

didn't kill all the cancer. It's very possible that some of it

had already escaped the prostate area even before the radiation

treatment and just couldn't be reached by the x-rays. If it has

spread to the neck it has almost certainly spread to other places

too, though the amounts may still be small and not yet causing

any problems.

Since he is still taking hormone therapy but the cancer is

growing anyway, it appears that he has become " hormone

refractory " .

There are other systemic treatments that can be tried. Your Dad

needs a good specialist medical oncologist who has experience

with prostate cancer and is aware of the current state of the

art. Some treatments that might be tried are ketoconazole,

docetaxel, revlimid, leukine, and some others. There are also

some promising experimental treatments available in clinical

trials including Abiraterone, MDV 3100, Alpharadin and others.

I don't know about conditions in the UK, but in the U.S., the

most advanced treatments and treatments in clinical trial are

usually only available in the larger cancer centers. If you live

in a smaller town, you might ask your local specialist about

whether your Dad should get a referral to one of the major cancer

hospitals associated with a large city or university.

It is possible that further treatment can prolong your Dad's

life. There's no way to know until it is tried. He will very

likely live for several more years but he could possibly live

for many more years if the treatments work for him. Each cancer

is different and we just don't know yet who will respond well to

treatment and who won't. If treatment is unable to keep the

cancer from growing, he should at least be able to maintain a

reasonable quality of life for a long time. Cancer is a very

painful and debilitating disease, but modern palliative care can

keep that well controlled give him a chance to continue to live a

good life in the time he has left.

I wish the best of luck to your Dad and to your family.

Alan

[Guest guest]

Clare,The first thing is that you must move to a new doctor immediately.  The doctor that sent your father away for a year clearly does not know prostate cancer.  He should have been actively monitored at least every three months.  Find a doctor who is a medical oncologist who has a practice  specializing in prostate cancer.  Do not go to a urologist, go to a medical oncologist. 

Before you can assume that he has become castrate resistant you must know what his testosterone level is currently.  A simple blood test will give you this information.  I would suggest that you sign in to the advanced prostate cancer  (with a lump in his neck and a PSA of 29 he clearly has advanced prostate cancer. even if the lump is not prostate cancer). This group is an on-line group similar to the ProstateCancerSuport group, but it is specifically designed to deal with advanced, metastatic prostate cancer.  You can join by going to:

 http://health.groups.yahoo.com/group/advancedprostatecancer/join    Between this group and the advanced group you will have multiple heads supporting you.

When you make your first post, after joining,  on the group let us know more about his history; his general medical history, his PSA and testosterone  history, what medications he takes, specifically what has made up the hormone therapy he has been on. 

Have the scans that were scheduled. 

 

Hi all, I'm a long time lurker whose father was first diagnosed 3 years ago. Dad's psa level on diagnosis was 19 he had radiotherapy and continues on hormone therapy. He was given the all clear and told not to come back for a year, however we decided to have a psa test halfway just for our own piece of mind and has levels were raised, 5, since then (3months or so) they have continued to rise to the current level of 29. They are not so concerned about that as they are about a large lump that has developed on his neck which they are saying is prostate cancer that has spread to the lymph nodes there. He is having a biopsy today and is already booked in for radiotherapy next week but I just wondered if anyone else has had any experience of this? I have to admit that we are all pretty scared and my own fears are if its spread to there could it be somewhere else (we will know that answer next week as he has had a number of scans)

Sorry to have waffled on and I hope I have given enough background info that someone will be able to reply. I'm just feeling lost right now, which I'm sure is a feeling most of you and your families have felt.

Wishing all light and love, Clare

-- T Nowak, MA, MSWDirector for Advocacy and  Advanced Prostate Cancer Programs, Malecare Inc. Men Fighting Cancer, TogetherSurvivor - Recurrent Prostate, Thyroid, Melanoma and Renal Cancers

www.advancedprostatecancer.net - A blog about advanced and recurrent prostate cancerwww.malecare.com - information and support about prostate cancer

http://health.groups.yahoo.com/group/advancedprostatecancer/ - an online support group for men and their families diagnosed with advanced and recurrent prostate cancer

[Guest guest]

Hi all, thank you for the relies. Dad is now being seen at an oncologist centre

and he is receiving radiotherapy to shrink the tumor on his neck which we have

now been advised is prostate cancer that has spread. As such after the

radiotherapy he is to be sent for chemotherapy to hopefully kill off any

remaining cells in his body. He is still having injections of Zolodex into the

stomach every 3 months and is now on steroid treatment. With regards to his

general health he has had one hell of a ride of poor health of late - he has had

a heart attack in the last few months and trapped sciatica in his back which has

left him unable to walk more than a few yards and even then he needs a walking

stick.

Understandably he is now quite down by all this and its taking its toll on the

family as well as him. Though we know being supportive to him is the most

important thing.

Thank you again for the replies, I will sit down with dad and go through them

with him. Wishing you all love and health, Clare x

[Guest guest]

Mal wrote:

> Hi all, thank you for the relies. Dad is now being seen at an

> oncologist centre and he is receiving radiotherapy to shrink

> the tumor on his neck which we have now been advised is

> prostate cancer that has spread. As such after the

> radiotherapy he is to be sent for chemotherapy to hopefully

> kill off any remaining cells in his body. He is still having

> injections of Zolodex into the stomach every 3 months and is

> now on steroid treatment. With regards to his general health

> he has had one hell of a ride of poor health of late - he has

> had a heart attack in the last few months and trapped sciatica

> in his back which has left him unable to walk more than a few

> yards and even then he needs a walking stick.

>

> Understandably he is now quite down by all this and its taking

> its toll on the family as well as him. Though we know being

> supportive to him is the most important thing.

>

> Thank you again for the replies, I will sit down with dad and

> go through them with him. Wishing you all love and health,

> Clare x

Hello Clare,

I'm sorry to hear about all of your Dad's problems.

I'd like to caution you about expectations regarding the

chemotherapy (usually docetaxel, trade name Taxotere). It is my

understanding that, for prostate cancer, chemo is not curative.

It will kill off some of the cancer, reduce or postpone the

incidence of cancer pain, and prolong life. However, as I

understand it, it cannot kill off all of the cancer and,

eventually, it will start growing again. At some point, further

chemotherapy will no longer work and will be discontinued.

How effective the chemo will be cannot be predicted. Some men

get no benefit at all. Some get many months or even years of

benefit. Most get a few months added to the length of their

life.

I'll also point out, however, that your Dad was probably not at

the end of his battle with cancer. Even if the chemo only gives

him an extra X months, that doesn't mean X months from now. It

means X months from when he would have died of the cancer.

There are things a family can do at this stage of life that can

make things easier for the future. These include:

Learning about hospice care and treatment for cancer pain. It is

my understanding that, even in late stages of cancer, it is

possible to make a patient reasonable comfortable. Some doctors

and hospice settings are better at that than others and some

research into local alternatives might be desirable.

It's a good idea to be sure that financial affairs are in order.

A good will and legal power of attorney for you or another

trusted family member to act for your Dad can make it much easier

for both him and his family to handle these issues.

There may be stories that your Dad knows about relatives, about

his childhood, about the history of the family, that no one knows

but him. He might like to write some of them down, or speak to a

video camera or tape recorder, or be interviewed about these

things with a tape recorder. There might be old family photos

with people in them that no one recognizes but your Dad. He

might like to identify them. A good way to identify old prints

is to write information on the back, in pencil. Ink can leak

through and damage the photos.

There might be places that your Dad would like to visit or things

he'd like to do that he hasn't been able to do yet. His problems

walking will limit that, but there may still be people he'd like

to see, or movies, books, music, or other experiences he'd enjoy.

This time of life is often filled with anxiety and depression.

It's hard to overcome that. But it's worthwhile to try. There

are still tasks to complete and still pleasures to be had. I

hope that your Dad is able to make the most of the time he has

left.

Best of luck.

Alan

[Guest guest]

Mal,There are other treatments that might help your dad before he moves on to chemotherapy (which as Alan has rightly mentioned will only work for a limited time period).  Before it is decided that the Zolodex is no longer working have the docotors take a testosterone level to confirm that your dad is actually at a castrate level.  If not, work with them to knock down the testosterone level.  If he is ask them to add casodex to his medications, casodex will block the testosterone from " feeding " the cancer.  Additionally, there are a number of other 2nd line hormone therapies that could be tried prior to chemo (they are easier to tolerate and can push off the time to starting chemo).  They include estrogen compounds and  ketoconozol. 

You should also be aware that all these hormone therapies can have negative cardiac effects, with a history of a recent heart problem his cardiologist must be aggressive in monitoring him. 

 

Hi all, thank you for the relies. Dad is now being seen at an oncologist centre and he is receiving radiotherapy to shrink the tumor on his neck which we have now been advised is prostate cancer that has spread. As such after the radiotherapy he is to be sent for chemotherapy to hopefully kill off any remaining cells in his body. He is still having injections of Zolodex into the stomach every 3 months and is now on steroid treatment. With regards to his general health he has had one hell of a ride of poor health of late - he has had a heart attack in the last few months and trapped sciatica in his back which has left him unable to walk more than a few yards and even then he needs a walking stick.

Understandably he is now quite down by all this and its taking its toll on the family as well as him. Though we know being supportive to him is the most important thing.

Thank you again for the replies, I will sit down with dad and go through them with him. Wishing you all love and health, Clare x

-- T Nowak, MA, MSWDirector for Advocacy and  Advanced Prostate Cancer Programs, Malecare Inc. Men Fighting Cancer, TogetherSurvivor - Recurrent Prostate, Thyroid, Melanoma and Renal Cancers

www.advancedprostatecancer.net - A blog about advanced and recurrent prostate cancerwww.malecare.com - information and support about prostate cancer

http://health.groups.yahoo.com/group/advancedprostatecancer/ - an online support group for men and their families diagnosed with advanced and recurrent prostate cancer