Need help

[Collarpurple]

Just on the start of this my husband psa was 62

I need to find Strength for him how do you guys do it

[16starsky]

Hi,we have been on this journey for 8months now, and my heads still spinning. My husband (62) APC GL9 PSA 310, All I could do for the first 6months was cry all the time. I fell upon this site by chance and after reading and asking my own questions I have a more positive attitude now. Yes its VERY scary, and yes I still cry occasionally, but reading all the inspiring posts on this site has given me hope for the future.

I never thought I would be on a PCA forum , but im glad I found this one, . you can ask anything and someone with knowledge will answer you. I feel more confident when we go to see the oncologist and can ask questions that I would never have known to ask before.

You need a positive attitude, it will bring you closer, and try not to think too far ahead, as I did at first. (what if)

As you can see there are many people who are in the same position, and hoping your husband gets the treatment he needs to stop this evil disease in its tracks. , have you had your diagnosis ? what age is your husband. ? (if you don't mind me asking)

Where are you based ? we are in the UK.

[Collarpurple in reply to 16starsky]

Age73. So far only his psa was 63. Did the blood test the ultra sound and the mri next visit the April 18

[Tall_Allen]

It's not a question of strength. It's just taking one step, and then taking another step, etc. Trying to predict the future is an exercise in depression and anxiety. Just deal with what is on your plate today. Your racing mind is your own worst enemy. I went to see a psychotherapist and learned to practice mindfulness to help me stay focused on the present. There are probably support groups for caregivers in your community that you may find helpful.

[Collarpurple in reply to Tall_Allen]

If pelvic area and no bone cancer could you still get a hip replacement no lesions seems to be

In prostate the cancer

[Collarpurple in reply to Collarpurple]

Dr said it is the treatable stage

[Tall_Allen in reply to Collarpurple]

I would think so. Ask your orthopedist.

[ctarleton]

There will be time for you both to be getting into the "left brain" details of how to learn more about the details of his individual prostate cancer situation, and how he can get access to good doctor(s) and treatment options. You've come to a good place where you can tap into the collective experience of many others who have been down similar roads.

I think it's Great that you are already reaching out for something more involving the "right brain" stuff. In my experience, there was a period of many months where both I and my spouse were emotionally shocked by the news of a Stage IV diagnosis, very many metastases, and a PSA in the thousands. Her being there for me at some appointments, and in some regular cancer/prostate cancer support groups was helpful for us. I had to learn all over again how to be "brave" enough to overcome my lifetime of "male-pattern-independence", and to open up about my sadness, anger, grief, and anxiety .... instead of trying to keep it all bottled up inside. And that was a two-way street, too, between me and my spouse. At first, she was very scared, too. In my experience, dealing with these "spiritual strength" things sooner, rather than later (or never), has been helpful. It's also been helpful to share some hugs, affection, and compassion about some of the side effects that some of the treatment drugs bring to the body, body image, and one's changing physical capabilities while on long-term treatments. It takes time. It takes love. It takes compassion. It takes resilience. It takes some well-placed humor and affection.

For me, that was 5 1/2 years ago. I still have ultimately incurable Stage IV cancer, but I've also already been Healed in many ways. Just some thoughts....

Charles

[Collarpurple in reply to ctarleton]

Charles thanks for the words. You are one of my HERO. You guys give this wife a place to vent and so much more❤️

[ctarleton in reply to Collarpurple]

"Aw Shucks", he said,... twisting the toe of his cowboy boot in the dust, "It twernt nuthin', Ma'am."

[Hidden]

Lots of prayers ...

[tallguy2]

Amen!

[Jmhanshaw]

Like said above....first year is a blur. Try to learn about this disease yourself. Go to a prostate oncologist/specialist .....until you find one you respect and like. After a year the ADTside effects settle down. I find exercise helps. I am busier now than before my stage 4 diagnosis which helps me not think about my pca.

[Sootymk3]

Keep a positive attitude dont Google too much and smile you can win

[Harry_B]

As some have said, there are great people here who can help you understand your options. Here is my 'Mantra' and it has proven helpful to me.

My cancer is now part of me and will be till the end.

We had best be friends then!

There is no cure today but with my team and hard work I can live well and keep it calm.

Some days will be good…some days will not be.

I will celebrate the good days and do the best I can on the others.

If I struggle to do small things, I will forgive myself.

When my family finds it hard I will not expect more than they can give.

I will live with humour before pathos until I’m done.

Stay strong together - that has also worked for me.

I wish you the best.

Harry

[Mish80]

You have come to the right place (in the crappest of circumstances). The men and women here are both knowledgeable and supportive. They genuinely care. I come here to get the info but also to feel a part of a community where we all ‘get it’ and understand that this pca train ride is like. As cliched as it is, I don’t feel as alone when I am here. In terms of finding strength... you will. As everyone has said, go day by day. Plan future stuff too, because your husband has lots and lots of years left! Remind yourself that pca can be a slow growing cancer and there are many treatments available and new ones evolving all the time. While this disease isn’t curable it IS treatable....

[Collarpurple in reply to Mish80]

Thank you

[2dee]

First, find a local Prostate cancer support group. Likely a group of men, and women, who have already gone through the confusion and concern you are just now experiencing. Regularly attend meetings to learn from those who precede you.

Excellent chance treatment can extend life. Read, question, find out all you can to make the most informed decisions.

2Dee

[Collarpurple]

Thank you to everyone. For answering

I have times that I can’t get my breath

But your replies have helped

I know I can’t fall apart

[CaregiverWife in reply to Collarpurple]

Hi Collarpurple. First, welcome! And as others have said, ask any question at any time. I wish I had a tenth of the smarts some have on this forum.

Second - yes, you can fall apart at times. I did, but not in front of my husband. I cried, screamed, ranted and begged God for a miracle. And when I was finished I took a deep breath and said to myself - We are here today, go be happy with John and make the best of every minute. And sometimes we cried together, but always picked ourselves up and went on living. There is nothing wrong in giving in to your emotions at times as long as you don’t dwell on the negative. Your husband knowing that you are there for him every step of the way will make a huge difference. Love each other deeply, do things that make you both happy and laugh a lot! I wish you and your husband the best outcome as you fight this battle together. Hugs! ❤️

[Collarpurple in reply to CaregiverWife]

Thank you I have seen how fast you feel the love and hope from everyone here

I Don’t feel alone and I’m really trying to realize that every day is a good day it’s so much I think to taking it first the unknown what’s gonna come next I’m gonna try Not to think about that and just deal with hour by hour I was really confused about PSA I didn’t know it Could get so high I thought my husbands at 63 was unbelievably high now we wait till the 18th to do the biopsy and as always know that I found this site my prayers are with you all these people

[Collarpurple in reply to CaregiverWife]

Bad news today Gleason score is 8

Bone scan next week hope it is clear

I wrote you because I felt close to you

You first said welcome

[Collarpurple]

Thank you. Prayers to you too

[PommyB]

I won't go into the treatments I use as they are unconventional and this seems a very orthodox site but I started off with a PSA of 79 at age 77 ten years ago in June. Today I am fitter than I was then, and much happier, and thank the cancer for the turnaround in my attitudes and lifestyle. The common thread of most seeming miraculous cures seems to be forgiveness of self and others, trust that you are healed and asking for that healing, and gratitude. At one stage I had a PSA of 134 and had to be catheterized for 6 months pending a TURP, not long after my wife died unexpectedly. A Nuclear scan showed stage 4 with right kidney totally involved and a patch on the right hip, my urologist gave me 7 years with one kidney. Another Nuclear scan 12 months later showed only the prostate involved, and I didn't get an explanation, but I did give some heartfelt thanks to my Guardian Angel. Talking of him, a few weeks back I dislocated a knee. 18 hours after visiting the ER and getting no-one able to put it back I faced another 2 hour drive without painkillers. I appealed to him out loud and with passion to restore its full function, and sat down for a coffee before leaving, lifted my dislocated leg to put it over the other as it hurt more dangling --- it went back in, no pain, full function ! "Ask and ye shall receive", where have I heard that before? :>)

[monte1111 in reply to PommyB]

Oh, my gosh. You do indeed have a Guardian Angel. Do you mind if I borrow him from time to time?

[Collarpurple in reply to monte1111]

Anytime. We got great news

He does have a tumor but it is very treatable

No spreading

[Scruffybut1 in reply to Collarpurple]

I was dxd Stage 4 in Oct 2014.Told I had lived with this damned disease for up to 3 years no symptoms. PSA 167. 20 bone tumours. 4 weeks later PSA 200. Not suitable for radiotherapy nor surgery. Settled for ADT still on it, 8 months of chemo.. then nil bone tumours. Now so many years later multiple multiple tumours, PSA 0.25 and rising. Am 73 and know cancers getting tired. If they don't die before me at least I know they will not survive my death.!....Wife wants another 10 years from me. I won't bet against her. Love to all, be strong, be happy ask for all the love you can get from family and friends and give even more back. David

[TommyTV]

It’s tough at first, as the word cancer brings back memories of grandparents and parents dying from it. But hey, that was years ago, and treatment has moved on dramatically since then.

There are lots of men like me, who were diagnosed stage 4 quite a while ago. In my case, 7.5 years ago, multiple Metastases, PSA of 571.

I’m still here and in good health. My cancer doesn’t control my life anymore, I rarely dwell on it, I’m just happy in the knowledge there are loads of new treatments coming along. The longer I live, the longer I’ll live.

[Sherpa111]

Strength in the physical sense, most of us work out in a gym for 4 to 6 hours a week. It is priority one in fighting this disease. Hire a trainer if you can afford to do so. Strength of family and of your Higher Power. I took a meditation class that taught me mindfulness. It was well worth it, however, it takes practice. Daily practice for a minimum of 20 minutes a day. The strength you seek for your husband is already there in you. Unite your family and friends around him and offer love. Strength will come. Read about this disease and ask questions. You are in the right place by joining this forum.

[Hidden]

I too have a husband who is 62 years of age and diagnosed with stage 4 prostate cancer. I read everyone of the above responses. They are filled with hope and love. This is exactly why I stay close to the folks on this site. They understand this disease BETTER than most. 1 year ago I lived in fear every minute of everyday. Now, I take it slowly. I ask questions, I read, I pray. The people on this site have been amazing. They want to help. Let them. I’m sorry you are going through this but know you do not have to suffer. 🙏

[Sherpa111]

Indeed!

[larry_dammit]

A friend of mine gave me a little Yorky. Dog. That helps keep me busy, once I got all my financial stuff in order I spend a lot of time with my wife and kids, blessed to have a 6 year old granddaughter that keeps me busy. But I guess when it comes down to it. I write a lot on this blog and keep a ledger of my thoughts. Stay busy ,say your prayers. And my wife found it helpful to talk to a counselor as well. Good luck with the monster 🙏🙏🙏🙏

[bobdc6]

One step/day at a time. Step one, get a good diagnosis, I got a 3T MRI to see if anything was there. 3T is operator dependent, so go to a radiologist who does a lot of prostates. My 3T indicated that I needed a biopsy, so I got one in-bore of the 3T machine, very accurate.

[Magnus1964]

I have been on this journey for 27 years. I too started with depression. Mental health is important. At first you live from PSA test to PSA test. It takes time to get over that. Learn all you can and be his medical advocate. All our love.

[Scruffybut1 in reply to Magnus1964]

I am astonished and enthralled by your blog. Thanks for giving so many of us more hope.

[Jackpine]

My wife and I have been on this journey for 5 1/2 years and like everyone on this sight we have all range the range of emotions from shock to hopelessness to out right joy when you get your first of many wins in fighting this disease.

I would recommend not askingDr. Google for answers, but would recommend asking questions here as you have a global collection of knowledge and treatments.

As others have said faith is very helpful and I know my wife and I have become closer to our God. We find strength in him and each other.

Find a great OC and center of excellence near you who specializes in PC, if you need recommendations this site is a great source. Be your own patient advocate and do not be afraid to question your husbands treatment plan if you do not feel comfortable with it. There are so many new treatments that help us live very normal lives. My last recommendation is to hold hands a lot, express your love for each other, and make plans to do the things you like. Staying active helps both the physical and mental strength to fight this battle!

We will be praying for you and your husband.

[Stegosaurus37]

As others have said, attitude is everything. One day at a time. Your imagination is your worst enemy - it always conjures up good or bad scenarios which will be far beyond whatever will happen in reality. When you're feeling bad, the best remedy is to do something good for someone else. That's sovereign.

Make time for yourself. You can't help others if you're not in good shape yourself. Try to find ways to laugh; sometimes just acting silly can do it.

We're all here for you and your husband; you both have our thoughts and prayers. Courage!

[dmt1121]

For me, it has been a combination of what has already been said by many. It has been a physical, psychological, emotional and spiritual journey for me. Finding the RELIABLE and REPUTABLE sources for information about the disease to inform yourself gave me both information and helped me feel more in control and gave me soem calm to just have some idea of what I was up against.

Seeing a therapist that deals with patients with potentialy life-threatening conditions may help to deal with depressions, anxiety and add clarity of thought. A psychiatrist may be able to prescibe a mild anti-anxiety and sleep aid if needed.

Working as team has helped my wife and me feel supported and like we are "covering the bases" for knowledge and questions to ask my MO. Keep in mind that there are a lot of efefctive treatment options out there that can be used to manage this disease as it progresses.

Most important for me is balancing treatment options with quality of life. Meditation definitely can also help keep one in a calm and clear mental state to reduce confusion and depression. It requires daily practice and serves as a "reset" for that day. Exercise will help him keep his energy up, imp[roves self-image and mainatining a positive outlook.

Finally, living in the moment and putting one foot in front of the other and doing those fun things you may have been putting off. It can be invigorating and improve his outlook by visiting family, friends, travelings, etc...

Also, you may need a support group or therapist to shoulder the burden or caretaker and advocate. It is my opinion that this is often harder on the family member(s) providing the caretaking and medical treatment advocacy...so pay attention to your mental and emotional state and find ways to renew yourself!

Let us know how you both are doing. Our experience is that this can be overwhelming but knowledge and experience gives perspective and help you mainatin a better quality of life.

Good luck.

[WifeofD]

Thank you Nal!! Everyone on this site is in our prayers...Prayer is Power! My husband never realized how many friends and family members he had until this cancer hit our life. Some days it was overwhelming, but so appreciated how many people poured their hearts out to us in prayers. We have become so much closer to our church. The Liturgical Director of our church has asked me to start a Cancer Support Group...I feel like this is my calling to give back to the church for what they have given to us in their support the last 6 months.

[WifeofD]

Hi Collarpurple! It's a journey that is very over whelming at first. We are 7 mos into this journey and finally have peace..Finding this site along with several others has been saving grace for us. My husband calls me the Research Queen of Cancer, but it's these sites and wonderful men here that I have to Thank!! Their knowledge and passion to help us all is power for us to advocate for our husbands! That is the one piece of advise I can give, be the advocate for your husband. He will need you more than over!

[j-o-h-n]

Strength? We get here.

Now please tell us more about your husband. AGE? LOCATION? TREATMENT SO FAR? TREATMENT CENTER? DOCTORS NAMES? All this info is voluntary but it can help us help you and your husband. The info can help us too. Please answer on a new post and do not answer to me. Hang in there for you husband and -

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 04/07/2019 4:37 PM DST

[Shadow46]

As I have posted before....I had the prostate removal surgery in 2003.....You do learn to cope with the idea of having a non-curable cancer....

My cancer was declared stage 4 in 2008....a battle since....different hormone suppression

meds, luprone injections....lots of blood labs, CT scans and bone scans....

Lots of side effects from meds.....you just learn to cope and have confidence in your doctor that he or she is doing they can for you. Maintaining good health keeps the side effects from getting worse....and lots of faith. As you will learn it is a very strange and can be dark

journey. Hopefully new meds that arrive on the scene are better at keeping the cancer at bay. I have been on Zytica for 14 months....I have been blessed with strong support from

my wife...it is not easy for her.

[WifeofD]

AMEN...

[Godschild62]

Amen- we could not have gotten through the journey without our faith in God.

[Cosette100]

Thank you for this wonderful message...how nice..

[gleason9guy]

It's a journey that you can choose to fight for life, or not. I decided to fight because I have family. And I know what it's like to see family give up on life. It affects everyone when that happens. So I fight, in the light and the darkness. I do it for them. And I do it because I need to live an honorable life to set an example. I know I will not win this battle in the end, but that's not the point anymore. Death with honor is a victory for all. That's my story.

[monte1111]

Glad it wasn't just me googling all those words. And the acronyms and abbreviations from hell.

[Jimdoud1]

Keep moving! Live your life. There are no guarantees. Find God!

[Todd1963]

Well, my PSA was over 3200. (Not a record dammit) the docs gave me a year. That was 12 years and 10 months ago. The cancer is currently undetectable. Life is going to change but it is not necessarily going to end soon

[SuppWife in reply to Todd1963]

Dear Todd1963, it's always warms my heart, lifts my soul, and steels my spine to read check-ins and updates from you. For those of us who are in this with and for the men we love you give us all the greatest hope. Thank you so much for staying connected to the boards.

[Collarpurple]

I’ve decided I’m so angry my husband told me that you can decline getting a PSA because your insurance may not pay for it what the hell is wrong with this world and when you do have a high PSA why doesn’t your doctor say do you want to live get it to the Urologist and get it checked don’t wait

[JimVanHorn]

I had prostate cancer for 11 years. I have had 72 radiations and 6 1/2 years of Lupron therapy. My insurance company Medicare (United Health) never refused to pay for a PSA. Find out about the tumor and keep us informed.

[Collarpurple in reply to JimVanHorn]

Gleason score 8

[Collarpurple]

I believe this is a new policy by insurances not Medicare It was stated to him that the insurance may not pay for it

[Collarpurple]

Can you still have hip replacement if your pelvic area is clear and bones are clear too