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PSA 1524 Guess I'm doomed.. now what? Quality of life, letting my family and friends know

twowheelsonly
Posts: 22
Joined: Sep 2010

Hi

This is my first post and I am dealing with advanced Prostate Cancer. I met with my doctor today and he gave me the news, I have not had a biopsy but my CT Scan showed lots of issues with enlarged Prostate, Lymphs with irregulairies and urine flow.. My PSA has climed from 40 to 70 to 1524 in the last 6 years...

Fortunately with all these health complications I still feel pretty good and I hope to enjoy what time I have in this lifetime.. probably will work less now and take time to be a human being rather than a human doing.. got to get my house in order and get rid of the clutter so it won't be such a burden on my family when I check out of this world..

I am determined not to let the big PC control my mind or things I like or want to do, I am planing on eating much better, only organic or at least as much as I can afford.. I have a good holistic program I will be starting call Iscador which is a immunity Therapy and I will be trying to reduce my stress level by emotional freedom techniques .. I am hoping that with some changes & more knowledge on what I can do for myself that I will extend my quality of life.. I don't want to be a burden on anyone and just want some tips or ideas on what has worked for other people on this forum..

Last thing is I am really at a loss on how to let my family and firends know.. should I wait to let them know..

God Bless you all...

Stewart

2ndBase's picture
2ndBase
Posts: 220
Joined: Mar 2004

I am in hospice care with terminal prostate cancer and my advice would be to get all the stress out of your life and it sounds like you already know this. I would not wait to let them know you have a problem and then get a handle on the diagnosis. When told I had maybe a year to live it was expected but still a little surprising. I do not believe it and know I will be here much longer than that. I am still working a couple of part time jobs that I totally enjoy and play golf and garden every day a can. Your friends and family will not consider you a burden and you will need some help at times as you move forward.
I am concerned for my wife as all this goes down and we are making plans to simplify the process. There are many hard choices in dealing with death but they are better made today while we see the grass from the top side.
Your biopsy will give the doctors alot of info as to what they think and then it is all up to you. I chose the minimum amount of treatment and am happy I did. Because my cancer had already spread before the biopsy I absolutly believe I would have been better off with no treatment whatever. Since we can not go back I am still very happy I chose quality of life as my main goal. I have survived nearly 7 years with a diagnosis of a 50% chance to survive two years. I hope your future is all you hope for.

griff 1
Posts: 114
Joined: Jun 2010

how are you doing, i hope good. i,m glad you are happy with what you decided. good luck to you griff

havit2
Posts: 19
Joined: Jul 2010

You should not panic or jump to conclusions, get the results from your biopsy and discuss all possible options with your doctors and get another opinion just to confirm. My PSA was also high (980) with mets to my legs, spine, pelvis and skull, my last PSA was 0.1 ..... I am hopefull to live many more years and continue with my life as normal as possible. Treatments as well as results can vary from one individual to another, so dont hesitate to ask questions and seek other opinions. Best of luck and prayers to you

Susiebelle
Posts: 15
Joined: Nov 2009

TwoWheels,

I don't post too often, but I read here everyday.

My husband was diagnosed with stage IV PC in May of 2009, at the age of 56. He has mets to his entire lymph system, virtually every bone in his body, two tumors in his right lung and several tumors on both of his adrenal glands. At diagnosis, his PSA was over 3000, and dropped to 1910 after the first Lupron shot. He started chemo (taxotere) in January of 2010, and that quit working in May. He then went to Mitraxatone, which stopped working in August. He is on his third type of chemo, cabazitaxel, which is very new. We will be having another CT in late October to see if this chemo has had any effect on the tumors in the organs.

He kept working until mid January of this year. He has just recently decided to retire from the Sheriff's department. He has had some pain issues, and does not always enjoy the side effects of the chemo, but he is happy with the treatment choices he has made.

We have not even discusssed prognosis with our oncologist. And we won't until there are no other options left to him. After a consultation at UCSF we learned he was not a candidate for Provenge. That was a disappointment. But we forged on and have done the best we can.

We tried the holistic approach in the very beginning, and found that after 9 months of doing exactly what was recommended, there was virtually no change to his cancer at all. No numbers improved, nothing. This may not be the case for everyone, but for him, there was no improvement whatsoever. He has changed his diet of course, we did that at the beginning and have continued that throughout this process. We see a nutritionist several times a year, and she is in contact with his oncologist. Everything is well co-ordinated, and he is content that he is doing all he can.

As far as telling family and friends, well, that is also a personal choice. We talked about it at length, and decided several things. We thought that when we told our children and the older grandchildren, we would make sure we had the right attitude. They will look to us on how to handle this, and we want them to understand that this can be done without their lives falling apart. As a result, both our children and grandchildren have taken all the news, each step of the way, quite well. Oh we all have our moments to be sure, but on the whole, we don't fall apart or cry all the time. I have had my moments with my daughters, and our grandchildren, and we allow ourselves that. It has been difficult, but honestly, I am not sure we would have done anything differently along the way. We got all our ducks in a row, and have everything done that should be done. And life goes on.

Our youngest daughter who is 30, had decided (after she got over the initial shock), that every little holiday would be an event. Never knowing when it would be the last that she would her father around. And this has been how we proceeded. We have family dinners on a regular basis, we enjoy being together, and we enjoy each other. We make sure that we are making memories along the way for the children and grandchildren. At some point, this will be very helpful and important for them.

It is, as everyone always says, a very personal road full of choices that are right for you. When all is said and done, you have to be comfortable with your own choices, and know that in your own mind, you did what was right for you.

I wish you the best of luck on this unwanted journey. It is not fun, it is not easy, but, it can be done. You just have to decide the way that is right for you.

Susiebelle

mrspjd
Posts: 688
Joined: Apr 2010

From one PCa wife to another, kudos to you and your husband for setting such a positive example and being a great role model for your family and loved ones during such a trying and difficult life challenge. From your post, it sounds like you have a strong support network and that's not surprising considering your attitude and the courageous approach you have taken in fighting this beastly disease. My heart goes out to you both, but to you in particular, as undoubtedly, you are the "glue" holding it all together for everybody. Wishing you all the best. Stay strong.
mrs pjd

laffinlill
Posts: 3
Joined: Oct 2010

I was happy to find this site. My husband was diagnosed in 2007 with advanced prostate cancer. He started hormone therapy, and was fine til Dec of this year. His mets started spreading fast, and it was in every short bone and long bone in his body...It looked like somebody had salted his bones with it. He had hypercalcemia, renal failure, his enzymes were out of control, etc. He has been hospitalized for four months since Dec., on and off. He started chemotherapy, and it seemed to be working, but his tumor was blocking his bladder, so he had some issues with that...along with a blood clot in his leg. He had to have a filter put in his neck because he was bleeding and they couldnt give him coumadin. Things looked up, and the chemo worked for awhile...His psa was down to 75...then they put did a turp in him, and his kidneys started working. So, he had radiation, and his psa level lowered...it went down to 0.4..but it recently raised again to 122. He hasradiation cystitis now.. He is on docetaxel
for cancer and pamidronate for the hypercalcemia...We cant understand why the psa spiked after radiation therapy....He has two more chemo treatments left, and if it doesnt get better, we are going to be asking about other therapy...If anybody has any ideas, pls let us know...We have a hard time believing these numbers, because he is feeling so well.

We are not ready to stop the fight...And, we are as much in love today as we were when we first got together. He is 63,and wants to go on a mission to Mexico...We wanted to travel...together.

Any ideas about whole food diets, and alternate treatments will be appreciated.

We are hoping he can have hyperbaric oxygen therapy to help with his cystitis.

In the meantime, pls pray for Mr. L.

J.L.

bdhilton
Posts: 752
Joined: Jan 2010

Susiebelle,

Well said. Thank you for your post and the best to you and your family

lewvino's picture
lewvino
Posts: 1004
Joined: May 2009

Thanks for posting! Do keep us posted along the way of this journey that you are travelling.

Larry

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

I was very moved by your well written, inspiring post which I am sure brought much comfort to twowheels. I think you should think about posting more often.

twowheelsonly
Posts: 22
Joined: Sep 2010

I am sure that there will be challenges for my family and me.. I do agree that having a positive outlook is so important and I am lucky to have been unaffected by any real illness my last 59 years!!!

I know that there is a lot of treatments available to me through my health care professionals and luckily I have insurance should I need advanced assistance with PC.. I do not know what I will try from my doctor and I still plan to proceed with a holistic approach to my care.. hopefully it will help me with quality of life.. I think the world is so poluted with so many toxic chemicals that end up in our food and water that cancer will become a much bigger problem for humans in the future.

I plan to continue to post my progress, treatments on this forum, hopefully, it will help other people in their journey.. I don't know why I got what i got but I do! Thanks again for your insight and bless you and your family!

Stewart

PS I would like to Thank everyone who has took sometime to share what their experiences with me, it makes this journey a lot less scarey and gives me hope that there is a life after the Dr says you have PC,, Thanks again! Bless You All!

ob66
Posts: 214
Joined: Apr 2010

We are all on here because we suffer PCa or are spouses of same. We all share your fears, and the path you face; but within ourselves we all face the same concerns, just a matter of when. Just like you, we are scared. I guess you can put more or less on it, but I think every poster who reads what you write, can relate very closely. I would only hold every hope that the quality of life is as good for you as for as long as possible. Miracle of miracles, that quality extends. More importantly, Bless You and keep in touch.

142
Posts: 169
Joined: Dec 2009

As I was reading through the thread, thinking what I might offer in support, but when I hit Susiebelle's post, I decided there was not much else to say - she covered it all.

Have the conversations with the doctors, perhaps HT will help. I am a Surgery and IGRT survivor at 57, knowing that some day I could be looking at the "next steps" as well.

I wish you well in your journey, and will watch for your updates.

BRONX52
Posts: 156
Joined: Apr 2010

Thank you so much for sharing. Many posters can relate to your story but rarely speak of how we shared with family and friends the impact that this disease has on loved ones. Best wishes on your journey to defeat this beast and keep on enjoying life.

JR1949
Posts: 230
Joined: Jun 2009

Susiebelle,
Thank you for sharing. Please do keep us posted on your journey.
JR

Susiebelle
Posts: 15
Joined: Nov 2009

I am not sure why I don't post more often. I guess because most of the members here are dealing with earlier stages of the disease. I know there are a few who have it more advanced as my husband does, but mostly everyone here is dealing with decisions on surgery or radiation choices. Perhaps I will try to add my two cents worth more often.

I truly hope Twowheels will find his way through this. I pray he finds the pathway to his own decisions on all the choices that lay ahead of him. And I hope he finds it in his heart to let his family and friends in. They will all be affected by his cancer, and he will find their support and caring far more important than any fear he may have of being a burden.

In the next few days I will update you all on the new chemo my husband is on. He is the first one in our medical facility to have it.

Susiebelle

Mallie
Posts: 10
Joined: Sep 2009

Hi Susiebelle,

Thanks for sharing that. My dad has advanced PC with mets to his bones, lumbar spine, ribs, thighs, etc. This has been an extremely rough road for me, my mother, my husband and my children. My heart feels as though it is breaking in a million pieces never to be mended back together. My dad went to the doctor yesterday and was told that he is nearing the end stages of this dreadful disease and that pain management is going to be the main concern. He has been taking Lupron injections since last July but they seem to be failing at this point. He also takes another injection which is suppose to boost his blood and immune system because his blood count is so low. His pain is beyond belief from what we see and he is losing massive amounts of weight due to poor apetite. The doctor recently gave him a stronger dosage of pain meds and it barely takes the edge off. This is a serious nightmare to live through or watch someone that you love so very much have to go through. My children ONLY know that their grandfather is extremely sick. They have no idea that he has cancer. I feel as though it might destroy them because they are so incredibly close to him. I am struggling now as to whether or not I should tell my oldest child who is 16 years old. I just don't know if my baby could handle it. I feel as though my world is falling apart and can't imagine that my baby (let alone my younger ones) won't feel like doing the same. I guess it's a no win situation either way. I guess there are also pros and cons to both.

I pray for everyone on this site and please do the same for me and my family. My Dad is the definition of unconditional love. He is my "Hero" and he always will be. I will cherish any time that I have with him and I will forever carry him in my heart. This is just so hard.

Kentr
Posts: 111
Joined: May 2009

I don't post very often but wanted to chime in on your situation. I'm not an expert on PC but do remember my doctor telling me about a patient he had with a PSA of roughly 18,000! It was an older guy (around 80 as I recall) and he lived another 5 years. I'm just saying you need to keep things in perspective and not throw in the towel.

Please continue to visit this site. There are SO many people here that can/will provide encouragement and support.

As far as telling family and friends go, that's an individual choice. I elected to do so a few days after I found out and have no rerets for doing so.

Our prayers are with you!

Kent

Mitch128
Posts: 20
Joined: Oct 2009

Stewart,

I decided early on NOT to let my friends know; only my wife and 3 physicians are "in the loop" and that's the way it will be until the end.

Rationale? It's a gut-check personal thing on the same order of choosing the right PCa treatment. IMO, IF you tell your friends, they will never look at you the same way again. It's a tribal reaction, or possibly an evolutionary one - they will avoid you, you're tainted by death. Worse than that, friends start treating you like you're dead long before you die - nobody wants to be reminded of his own mortality and your condition acts as unwelcome affirmation. Your friends, illogically will shun you thinking your condition is somehow contagious - it reflects the fragility of human nature.

Maybe the best reason: I'm guided in this regard by the purely unselfish thought that, by telling my friends, I'm really imposing an unnecessary, wrenching burden any true friend shouldn't have to shoulder. Better to go on as before and make excuses when necessary that you're a little "under the weather".

Hope this adds some insight.

Mitch

twowheelsonly
Posts: 22
Joined: Sep 2010

I agree that it's better not to have everyone in your life know you have C.. believing what one focuses on comes to be, so having everyone seeing your fate is not such a good thing.. whatever my course with is with PC I still believe I will be able to enjoy my life and my all blessings..

I still have to meet with my Urologist and a couple of other MD and Holistic doctors in the next couple of weeks.. I am sure they will have suggestions as to what can be done.. I am still optomistic that my time on this earth is not coming to an end anytime soon!

I have already started a regiment of natural (organic)vitamins and foods to support my body, I plan to start a injection I can do at home, this therapy has been offered from Switzerland since the early 1930's, is all natural Mistletoe extract that is converted into an injection, it's called Iscador, it is used by the health care system as a Immunity Therapy in Europe for people undergoing conventional C treatments, it is designed to support your immunity system, all these things I plan to do may not stop my PC but I still think that they are a better than the alternative... definately eating organic food is better alternative. A book that was recommended to me by a doctor was titled Gersons 50 case study, the book reflects 50 case study's of peoples story's dealing with C. He felt it gave a very good understanding of what a person faces dealing with C.

The only other option is to continue to consume processed foods and radiated vegetables,& the genetically modified foods offered at the local supermarket, which I have stopped doing, I did not realize that the FDA would have these foods labelled so consumers were aware of these foods were modified but they don't require any labelling.

I recently was ucky enough to take a 3 week trip and rode my motorcycle mainly on country roads from Atlanta to Vancouver B.C. & back, whle I was going through Nebraska I smelt a vile odor for about 10 miles, I was riding into the wind, I came around a curve on a hill and there it was a huge FeedLot.. must of been 50,000 to 100,000 cows jammed in outside several large pens, with no real room for the poor cows to move around.. some locals told me years ago Nebraska had cattle ranchs everwhere and cows would graze the fields but now there are a few companies that bought out all the ranchs and now they don't allow the cows to graze, they are kept in pens and fed corn, antibotics & never get to graze in any pastures, to put it simply DISGUSTING! In my ride through Nebraska I hardly saw any cows on any of the vast ranges but I did see a few more feedlots.. I thought this is not good...

I blame big business, I saw a documentry on TV that 5 or 6 company's now control most of the foods we eat, it's my feeling that these types of foods are a big reason that so many souls suffer from C.. if you can afford it buy organic or at least buying at the local farm or farmers market it may not be convenient but will be much better for you & your family in the long run.. As my wife suggest "this is not a time to be thrifty on yourself"

I will update my progress and treatment as I go on this journey.. may you all be blessed with Happiness & lots of Love.. Take Care!

Stewart

gkoper's picture
gkoper
Posts: 174
Joined: Apr 2009

You can win the fight Stewart-----you have the right attitude.....good diet, staying abreast of the latest tools to fight the beast, a supportive homefront and belief in a higher power. And ride that motorcycle, keep living what brings you joy. And for the bad smell of pent up cows--------though I eat very little beef.....lets only buy grass fed when we want a dose of red wine.....oops, beef.
Cheers,
George

Kimken
Posts: 1
Joined: Oct 2010

This is my first post. My husband was diagnosed with prostate cancer in May of this year. His original gleason score was reported as a 10. His radiation therapist has his gleason recorded as a 9. We are told he has one of the most aggessive types of cancer there is. He was advised against having surgery and instead he will take hormones for two years and eight and a half weeks of radiation. He is currently in his fifth week. It's encouraging to read all the positive prognosis.

Wanttoknow
Posts: 7
Joined: Oct 2010

Kimken:
My doctor is suggesting Hormone therapy as my next course of action. I am reluctant because of the side effects. Can you enlighten me as per your husband's experiences. Hope all is going well.
J

Life Explorer
Posts: 5
Joined: Nov 2010

This is my first post, but wanted to respond to your question about side effects during hormone therapy. My husband has been on Lupron since March of 2010. (He had a radical prostatectomy when his psa was 5.3. His gleason score was 8 and he had a positive lymph node. He started on lupron 12 weeks after surgery because his psa 6 weeks after surgery was 0.08 and then it jumped to 0.12 after another 6 weeks.)

The side effects that drive him crazy are dry mouth, hot flashes and impotence. The hot flashes are the worst, but they have improved over time. He tells me that all these side effects are a small price to pay for keeping the cancer at bay. I couldn't agree more.

Best of luck to you and everyone on this site!

PA_grandma
Posts: 48
Joined: Oct 2010

My 79 year old husband was diagnosed with advanced PC and had his first (double) Firmagon hormone injection on October 16th.

The immediate side effects were a bit startling.
Lethargic and sedentary
Hot flashes alternating with chills
Night sweats
and
Taste buds affected.

They have diminished somewhat slightly these past two weeks.

My husband will see his Urologist this afternoon for the update on a second lymph node biopsy. The first was 'inconclusive'... but we expect the report has found there is involvement. We were told that if this is the case, that hormone therapy is the only course of treatment. Surgery and or radiation would not be an option.

We have told family and close friends about this diagnosis, and don't (as yet) regret this decision.

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