My husband has been recently diagnosed.

[todokomo3]

Just found this group and hoping someone could give us some advice. My husband is 52 years old and was diagnosed a few weeks ago with prostate cancer. His gleason score was 3+4 = 7. His psa was 31.43. He just had the CT scan and that showed lymph nodes in the pelvis and also a 4mm spot on the liver. Tomorrow we are going to Sloan in NYC. I welcome any information you can share. I don't know where to begin and I'm a wreck. Thank you all.

[todokomo3]

Thank you Nalakrats. I am grateful for your advice and for replying. I am trying to get familiar with some of the information posted on this site so I have some knowledge going in tomorrow.

[kenner in reply to todokomo3]

When you mention or hear the word cancer we all get stressed, I know I was. My PSA was 37.5 upon discovery 18 years ago.I'm still here smelling the roses with my wife.

[Hidden in reply to kenner]

Kenner , your words and experience bring great hope to,us following Behind or just starting out. Thank you.

[Tall_Allen]

Michael Morris at MSK is excellent. I expect they will start him off right away with hormone therapy, which should halt progression for now. The two great therapies for men in his situation are docetaxel or Zytiga. You can read about his options here:

pcnrv.blogspot.com/2017/06/...

In addition, MSK is one of a very short list of hospitals in the world that are on the forefront of personalized medicine. I'm sure they will want to do more diagnostic tests to tailor the right therapy for him. They also have many great clinical trials going.

[todokomo3 in reply to Tall_Allen]

Thank you so much!! My daughter is actually a nurse at MSK, but just started on another floor.

[dockam]

They may offer hormone therapy to stop testosterone production with Lupron shot and a pill of daily Casodex which prevents the T from attaching onto the cancer. They may offer chemo also - that's new protocol that has proven enhance longevity. Zytiga may be offered also. He should prep for hormone therapy by getting in as good a physical shape with cardio and weights to offset possible muscle mass, bone loss, fatigue and other side effects.

Btw - I'm GL 7, PSA at 840, 15 chemo, 30 months hormone therapy. Got down to 0.1

Best to y'all

Randy

[todokomo3 in reply to dockam]

Thank you Randy!! Good luck to you as well. He's in pretty good shape, but I'll tell him about the weights and cardio.

[dockam in reply to todokomo3]

This forum is a great resource, but as ads state: "individual results may vary" Do research, print up questions - so you won't forget any, bring a notebook too.

There will be good times and bad, like any journey - prepare for him to have mood swings/hot flashes/man boobs if on hormone deprivation therapy.

I have modified my diet with mostly whole grains, low carb, lotta veggies/fruit. I try to do some exercise daily. No red meat, dairy or poultry. Seafood at least twice/week

An article from my local paper:

theloopnewspaper.com/story/...

Carpe Diem and Fight On - Randy

[todokomo3 in reply to dockam]

You are an inspiration. Thank you for sharing.

[Chiquis]

I can understand how you feel. When my husband was told he had cancer over 7 years ago I had all types of emotions. Take a deep breath. I hope the appointment goes well tomorrow. Keep us posted. A hug to you.

You are not alone.

Sincerely,

Erika🙏💛

[todokomo3 in reply to Chiquis]

Thank you Erika! There is comfort in knowing so many are fighting this beside us.

[Darryl Partner]

Your husband is welcome to attend the nyc Prostate Cancer Support groups. Schedule is here: Https://Malecare.org/nyc

[todokomo3 in reply to Darryl]

Thank you Darryl!!

[Emmett50]

My spouse was diagnosed in December 2017. The first few weeks and months made my head spin. RP, RT, EBRT, ADT, etc., etc. I read and read and read some more. It’s great that you have access to MSK. Ask any question that you have. Do not hesitate. While it’s your husband with the PCa, this darn disease affects you and your family too.

My hope is that you find a medical oncologist who not only specializes in PCa but who engenders confidence and hope in all of you. The early part of the cancer ride is rocky but you will find that the path gets clearer and a bit smoother as you choose a treatment program. My best wishes and a virtual hug from San Diego! Mary

[Haniff]

Hi

Keep your spirits up Your husband would need all the support he can get. Breathe easy and listen to the doctor's advice, if need be no harm in getting second opinion to cross reference. You have found the best site, cause everyone here is fantastic.

Take care and smile

[pakb]

My husband was diagnosed on August at age 49 Gleason 9 with mets- you can read what we have done on my bio but I need to update it. I don't have in there that he started 2 months ago with Zytiga + prednisone. He was/is in great physical shape but mskes sure he works out a few times a week now. He also went completely plant based eating in August. Besides his oncologist and team we also talk to an intrgrative doc who helps us make sure he's getting the nourishment he needs. This site is fabulous for support and information. Take in all you can- I do limit myself to a research or else I would spend all day doing it- make sure you also are living, trying to keep both your stress levels low, and taking time to breath. Hard in the beginning especially. Go to all his appointments with him and keep a notebook with detailed notes as well as questions to ask at each appt. No question is trivial or silly. Take care of yourself too- I have found I need a little time each day to reflect on non- cancer things and positives. Most days my husband and I take time to write down something we are grateful for. It really helps. ❤

[mdiaz76 in reply to pakb]

My husband was dx at 48. Stage 4 extensive mets to bones and lymph nodes. We discovered it only because his shoulder was hurting him while swimming. We are approaching the one year anniversary of his dx. Some days are rough especially with the mood swings etc. but we too are doing integrative measures. We do supplements and Vit C IV. We have found that when he stopped his VIt C from twice a week to every other week he has had insomnia and crazy depression. So now we are going back to twice a week to see if it changes.

I am 37 myself and this disease has tried to handicap me from living too. My outlets are to work out vigorously and take it day by day

Only treatments he has done so far:

7/17 - PSA 250

8/17 - PSA 489; started Firmagon then docetaxel

Currently only on Lupron. His PSA went up a bit but I probably can contribute that to his 3 hour bike ride before the doctor appointment and our intimacy the night before.

[Hidden]

Welcome to the site. It is chock full of enough experiences and information to help guide and support you and your husband with decisions that will be challenging. It was here that one of the folks suggested Dr Drake at Columbia/NY Pres. Went to see him yesterday. Prostate cancer diagnosis at 58 yrs old. Gleason score 4+3 Decided on radiation txs and Elegard injections and thought all was well till I was told it is now outside the prostate 2 1/2 yrs later. New line of meds in order now. So onto the next steps. This cancer diagnosis is frightening and of course you are a wreck. Do your homework. Get a second opinion. Going to see Dr. Oh at Mt Sinai next week although I am leaning towards Dr Drake at this point. He's a brilliant guy as so many of them are who work, study in this field. I will suggest a book I read written by a physician who had prostate cancer himself Dr. Snuffy Myers. Beating Prostate Cancer. Consider it as a baseline study guide. It helped me. Best of luck. Lots of prayers.

[Surfside in reply to Hidden]

Dr Oh is awesome

[Hidden in reply to Surfside]

Looking forward to meeting him next week. I’ll keep you all updated

[larry_dammit]

Welcome to the group 😀. First. My doctor told me when I was diagnosed no one wants cancer but there has never been a better time to have it . Stage 4 here with bone,spine and lymph nodes 20 months ago. My doctor went after it , 6 rounds of chemo, lupron and Xgeva shot monthly .psa is zero now but going in monthly . Every doctor is going to be different as every patient is different. My wife has been seeing a councilor to help her with the worry and I lean on her. Just don’t give up the battle

[ronnie1943]

Hi, my name is Lynn. My husband has stage four Pc . I totally understand the feeling of hearing the word cancer,..I felt like my world was turned upside down. That was almost ten years ago. I feel some times it's just as hard on the spouse and family. There will be bumps in the road along the journey but some how we learn to live with it. I'm so very sorry to hear about your husband. You will find this site so helpful, so many have so much knowledge and we are all in this together and support one another.

Sloan is a great hospital, your husband will be in good hands.There are so many treatments today, and many more in the making everyday!! ,

Keep us posted....we are all here for you. 😘

Best wishes and sending hugs.... Lynn .Pa.

[tallguy2]

I was referred to this site last weekend, six years after first diagnosis. It is a blessing...the only site I’ve found with postings from guys like us. It sounds like you were well-prepared going to MSK. Good luck and please keep the group posted! Once you have your care team in place my suggestion is that you don’t overdo the research. It can be overwhelming. At least for me.

[Litlerny]

I’m really sorry to hear about your hubby’s diagnosis, but welcome aboard to the “train” of a bunch of caring and sharing PCa patients and their co-suffering caretakers. My wife has been my combination saint, angel 😇 and cheerleader since my Stage 4 diagnosis in 2015. The people in this group have a lot of valuable information, and loads of compassion and empathy for each other, including you and your husband.

There’s not much I can add here that hasn’t already been conveyed by all the other replies you have already received, but it sounds like you are off to a good start to putting the brakes on this insidious and cruel disease.

Since each of our situations and circumstances is somewhat different, I like to think we are all on the same train but in a different car. But the more I think about it, it’s more like a roller coaster than a train. We all went through the initial shock and panic when we were first diagnosed. There is a very rapid learning curve for dealing with the disease and fighting the battle. You and your husband will be fine. MSK is one of the top prostate cancer centers in the world.

Just recognize that you have a “new reality” to face and some adjustments to make, but try to keep your lives as normal as possible. I know...easier said than done. But there are people in here who have been living (with a fairly good quality of life) with Stage 4 PCa for 8-10-12+ years. After 3 years on ADT with Eligard and Casodex, and a recent elective course of chemo with docetaxel, my PSA is still undetectable, I have no bone pain, I have adjusted to the side effects from the Eligard/Lupron and bicalutamide (Casodex), and I still golf 2 or 3 times a week...albeit just as badly as I did prior to my diagnosis 🏌️⛳️😎.

Keep your faith strong and attitudes positive. They are important factors in dealing with advanced PCa.

Thoughts and prayers are with you both.

Mark

[chillywilly]

Having been diagnosed not too long ago myself (March, PSA 130, Gleason 9, lymph nodes in pelvic area and beyond.Currently on Lupron/6mos; Zytiga and Prednisone ), I can echo many of the comments here. At this stage, you and your husband have to do everything you can to stay positive and focused. Health of the mind is just as important for this bastard decease. Don't let it get in your head! Have many questions for your doctor, don't leave anything unanswered (there are no stupid questions). Inform yourself about the different treatment options they will present. Ask about expected side effects. Have your husband be involved in the decisions as opposed to accept and follow. This helps with the mental health (at least it did for me). I am grateful for this community for there so much information, love, and encouragement. Stay strong!

[Apollo123]

Hi I was diagnosed Gleason 9 with lymph spread to pelvis and chest at 47. That was over a year ago, I’m now PSA undetectable And was put on Zytiga plus predisonon and Zoladex. It’s a hard time those first months, the rollercoaster of emotion, the anger, denial but now over a year later I’m much calmer and feel more positive. There are men on here that offer knowledge and support and proof that you can live a very long time with prostate cancer. I live life to the full and have accepted this new life. Stay positive and surround yourself with good friends and family. There are amazing new treatments being developed all the time. 👍

[todokomo3]

Did anyone choose surgery in this thread? The surgeon feels that is the best option for my husband due to his age. Meeting with the Radiation Oncologist next week. Thank you all.

[Hidden in reply to todokomo3]

I had a RRP 2004, lesson 4/3, PSA < ten. No probs over the years but, 14 years later, my PSA started increasing. Bone scan showed Iliac node with PCa, stage four. On a three month dose of Iligard, results next month. DOB 5/5/36... Cinco de Mayo

[Hidden in reply to Hidden]

36. Wow! Feliz cumpleanos senor! I m sorry to here of this uptick for you. A14 years , that was great. I started out stage #4 in pretty bad shap I’m on cruise control now with a no signs status for almost 2yrs. I thank god for this continuously . So for a guy like me reading your story. I know I’m in the first rounds. Treatments can push even a stage 4 back with a lot of luck. I say 5-5-36 is a dam lucky day to be born. God bless you in this plight and Happy birthday amigo.

[j-o-h-n]

Greetings.

Well I would also recommend MSKcc. In the future if surgery is his option, try Dr. James Eastham (he performed my RPD), and as far as an oncologist Dr. Michael Morris( My Oncologist). I'm not sure if he will have to go through the protocol of seeing a urologist first.

Good Luck and Good Health.

j-o-h-n Wednesday 05/02/2018 2:14 PM EDT

[dockam]

The latest protocol is to debulk the source of the cancer which is the prostate, but surgery has it's own concerns. When I was diagnosed that was not an option as I had mets to l side ureter lymph nodes - MedOnc said "horses left the barn", I replied that the terrorists left the base camp.

So, doing hormone therapy(Lupron and Casodex) and maybe with Zytiga will get any cancer throughout his body. Maybe a minimum of 6 Taxotere sessions will also be added to kill off the weakened cancer.

Randy

[SsgCulldelight]

First, take a deep breath, relax, PC is serious but by no means a death sentence, even in advanced stages it is a progressive disorder. I call it that because dis ease is misleading. There are many options available, if he's highly active, tell him to stay that way, matter a fact find more ish, to do, that'll keep spirits high and his mind off of his condition. Know that all illness or disorder IS 90% psychological, and the rest is physical. I know they sounds strange, but these things beat you when you let them. Change diet exercise and do a lot of what you love, that's the best medicine. STRESS is the number one cause of cell morphing, or changes in healthy cells, we don't understand that yet, but we will. Take a deep breath and relax, think positive and make a plan you can live with.

[Hidden in reply to SsgCulldelight]

Sage advice..ssg

[Blair77]

Also, and not to give false hope but my husband was diagnosed with lesions in his liver. They had nothing to do with the prostate cancer, they were from Fatty Liver Disease ( completely not harmful or related) and he's 48 and his PSA was 1044. Wait till you have more information...

[Hidden]

To todokomo3 , our partners need to take xtra good care of themselves.. This is a taxing event for loved ones and especially the spouses. It’s normal to be overwhelmed with fear of the unknown and the reality of needing to fight to survive a terminal #4 diagnosis.. He will make it thru treatments and then recovery. He has you . He’s in good hands .. Love can cure all .

[Giorgos]

Dignosed at age 52 4 years ago

Physical exam normal

Digital rectal examination revealed enlarge prostate

Biopsy : ADENOCARCINOMA

Gleason score 8(5+3)

involving left>right lobe, established capsul penetration, lemph nodes involved.

Laborator data normal- negative for mets

Hormonotherapy FIRMAGON. PSA resitant.

20/10/15 Surgical intervention. Total prostatectomy (L. Da Vinci robot assisted ), removal of seminal vesicles and lymph nodes.

Biopsy DIFERENCIATION TO NEUROENDOCRINE

Hormonotherapy ELITYRAN and chemotherapy TAXOTERE -CARBOPLATINE (4 cycles). PSA decline for a litle time

After PSA is rising to 200 ng/ml despite 2 new cycles chemotherapy and hormonotherapy.

There are met points in bones

4/11/17 removal tumor urinary tract and pigtails

8/11/17 trial anosotherapy whit ATEZOLIZUMAB and XTANDI . PSA rising to 300

Last proposition Ga 68 PSMA PET/SCAN and , if responsive, Lutenium 177 PSMA Therapy in CHARITE Hospital Berlin Germany.

Targeted therapy for neuroendocrine CR prostate cancer , + mets and Lymph nodes involvement, resistant to traditional therapies.

[Hidden in reply to Giorgos]

To Giorgos , We are close in age . My dx was 3-15. I’m now 57. You have been on this unstable battlefield for some time.. that’s a lot of suffering. I’m sorry to hear of such a rough trip.. I am pulling for you to get a break somehow some way.. keep me posted ... please. Prayers to you .. Hope that you can find some solace and get out of pain and treatments soon with better results. It sounds like to me that you really have a tuff one.. I pray for you to have the strength to .. endure.. for some years away from this cloud over your had.. Keep the faith. God Bless!