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Stage 4 Metastatic Prostate Cancer
Pennylynn
5 Posts

A few months ago, my husband went into the dr's office with what he thought was a bladder infection, and was diagnosed with Stage 4 metastatic Prostate Cancer. I'm writing because I'm a mix bag of emotions…and I'm not quite sure I'm hearing or reading the dr's reports (MyChart) correctly…. From what I understand, his main source of cancer is from the prostate - 2" wide, and has now metastized to his l4/l5 and femer, other areas upward his spine, spatula, all according to the bone scan wording… that scan result has yet to be fully talked about with his oncologist…it was quite vague. He is getting injections every 3 months…he was put on Xtandi, and getting blood work every 6 weeks… and after 5 bouts of radiation to his prostate and spine, we wait 6 weeks to see the oncologists/bloodword team. What "I know" is it has gone through his bladder/kidneys and liver… we have got cat scans, xrays and MRIs. The first initial meeting with the oncologist, they stated a couple of years if it's not aggressive and if the pills don't work. Maybe I'm blocking things as all this came to us like a train…. but what is really his life span? is it 2 or less years? can he live longer than that? I hear people talking 10+ years… After 6 weeks, are we headed to more radiation? in different areas? so many questions… and maybe I am asking the wrong people…I'm just tryin to wrap my head around all this… financially, emotionally, and trying to figure out the future… lack of better words.

10 Replies
Whitelilies
1667 Posts

@Pennylynn Hello….thank you for sharing with us, and trusting us….with where your husband is right now, and yourself, as well. Yes; the “train” came……it is all a whirlwind now…..we understand….many appts….many tests…..results on the way……not “knowing” is hard….."hearing" varying timelines is confusing……Please trust in his medical team……

write down all your questions…..attend, in person/if possible, his next appt with Oncologist…..most important questions on top of your list.

Please DO NOT google…..it is outdated….not a “number” that will be of value, to your husband….

Please reach out to the Oncology Social Worker, at his hospital…..they are a wealth of resources and contacts, and will see you/him, for appointments…..just to talk…this is vital as well….you can go solo….with your husband…..all up to you….you can do it over the phone; whatever works for you….

I am also in Ontario…..my treatment was at Sunnybrook Hospital (Toronto) and my surgery at North York General Hospital…..At North York Gen…..there was also a Psychiatrist/Oncology….I saw her-a-plenty! She helped me, with the tough times…..See if his hospital has this staff to help as well….might be a Psychologist……they can support you both.

If you need to talk…please call Canadian Cancer Society….

1-888-939-3333

Please meet: @Brighty @Cynthia Mac (Both from ONT)…..Thank you so much, if you could share some care giving experiences, coping strategies, to support our new member….caring for her husband….and needing to connect……much appreciation.

Penny-Lynn….we are all, here to support you……and your husband.

Regards

Whitelilies

#prostateCancer

Cynthia Mac
3417 Posts

Hi, @Pennylynn, I’m glad you’ve found Cancer Connection, but sorry for the reason. I’m here because of my Dad’s metastatic lung cancer, which was discovered a couple months after my Mom passed away in 2017, so I know about this train of which you speak!

If I might suggest, put together a book for your husband, so you have a place to write down all these questions you have. That way, you won’t miss anything at an appointment. When Dad was diagnosed, I grabbed a coil-bound book with tabs in it for contacts, medications, appointment/schedule, Q&A, etc. It helped us to know that everything was in one place.

Rather than trying to get a “timeframe” of how much longer he has, I suggest you focus on getting the most out of every day. Between changes in treatment regimens, and the fact that developments in cancer research are happening monthly, if not weekly, not to mention the fact that every patient responds differently to the various treatments out there, not even the doctors can pin-point how long a patient has.

We also advocate self-care for caregivers here, so find something that will help you be able to re-charge your batteries. The analogy we often use is that you can’t offer someone a drink if your own cup is empty.

I hope this helps. If there’s anything else we can do, write in.

Brighty
7731 Posts

Hi @Pennylynn just wanted to welcome you….I promise to write a more detailed reply shortly .

Brighty
7731 Posts

@Pennylynn, sorry I'm having trouble tagging your user name. @Whitelillies tagged me earlier and I wanted to reach out to you. @Pennylynn. I'm so sorry for what you are going through. I can not speak about prostate cancer or any of the medical questions……..but I do know of the train wreck cancer can cause in the lives of both the patient and the person who loves them. It's shocking, guttwrenching, heartbreaking and just plain unfair. I'm here because I cared for my fiance who had stage 4 esophegeal cancer.

You got some wonderful advice from @Whitelillies and @cynthia mac. Writing down your questions and keeping track of everything in a notebook is a fabulous idea. Are you able to go to appointments with him or do they have to be by phone? Can you possibly conference call with the doctor and have yet another family member as a third set of ears? Sometimes it takes a few sets of ears to catch all the information. There is so much coming at you. Don't be afraid to ask the oncologist to explain things if you don't understand, or even seek a second opinion if you feel unsatisfied with the care he is getting. Perhaps @jackwb and @Bluenoser13 can help you formulate questions to ask at appointments. They have experience with Prostate cancer and will be able to come up with questions for you to ask. The cancer info line is also a wonderful resource as well. 1888 939 3333. They will help answer any questions you may have.

I agree with @Cynthia Mac, try not to focus on how much time he has left, rather, live in the moment and focus on the here and now. Spend quality time with him, look at photos, watch tv, plan date nights if you can, take walks if you can, enjoy each other's company. And talk about every day things, like the hockey game, your day at work, or just ordinary things. he will want to hear about that, and hear about your day.

Treatments for stage 4 cancer now have come such a long way, and people are living longer and better quality lives. There is much hope.

Don't be shy to reach out to friends and family members for help, and be specific about what it is that you need. This is not the time to be proud, or to go at this alone. And take care of yourself too. Don't neglect yourself or your needs. We are here to listen and to support you both in whatever you need. @lianne I'm having trouble tagging, I hope you see this.

Bluenoser13
54 Posts

Hi @Pennylynn

Thank you for reaching out to this amazing group of caring and sharing folks. Sorry to hear about your husband's diagnosis but we are here to help you both through the many ups and downs of this disease.

Like many have already said, it is very important to write down any questions for your medical team and record what they tell you. There is so much information that you can get over-whelmed very easily. Once you are back home, you can review the information and that can help you both decide on what is relevant and what is not as important at this stage of his diagnosis.

I too, have stage 4 prostate cancer and after a year on ADT, I just take one day at a time. Many doctors won't give a “time” (including my own) as there are new medications be developed and clinical trials available that your husband my qualify for that can not only prolong his life, but his quality of life. Talk to your oncologist about options and don't take no for an answer if you're not satisfied, you can get a second opinion if you feel that is warranted.

Also, as his primary caregiver, there is help for you too. There are clinical social workers, some places call them navigators that an help you and your family as you fight this disease.

I know it's so much to handle but you have this and I'm sure you will find your way as each day passes. We are here for you and please reach out if you have any questions. Every cancer is different for each of us, but we all share our experiences and hopefully, you can take some comfort in that the process will become routine in time. Enjoy your time together and keep us posted as much as you feel comfortable in doing so.

Our thoughts and prayers are with you!🙏

Ellin
1 Posts
I do understand what you are going through — my husband was diagnosed with Stage 4 metastatic Prostate Cancer 4 years ago — and it has been a very emotional and emotionally exhausting time. I am sure you are feeling shocked, overwhelmed and frightened at the moment, but you will find that in time, you will begin to cope with the diagnosis and all the attendant treatments and effects. As others have said, write down questions before doctor’s Appointments and write down the responses — you will have to be an advocate for your husband in this— he might find all the information difficult to process. Remember — there is no such thing as a stupid question in this situation. Insist on clarity if what the oncologist says is confusing, or if you don’t fully understand what is noted in mychart; ask them to slow down or repeat what has been said if they’re talking too quickly. if you’re not happy with a response, tell them so (politely, of course); ask about new treatments, help in the home, or anything at all that worries or concerns you both. Don’t be afraid to cry if what is happening or what you’re being told is upsetting — I’ve found oncologists and nursing staff very sympathetic and helpful at all times, but particularly once they realize the pain you are in. If your husband is like mine, he will tend to downplay his symptoms — make sure the doctors hear what your impressions are of his pain, or reactions to treatment etc. As others have also said— new treatments and trials are coming up all the time so try not to despair. I know that is easier said than done! Don’t Forget there is help out there for you too — don’t be afraid to ask at the hospital for it. We now have a community nurse and a psw visiting weekly.
Finally, don’t forget the power of family and friendship — try to make time to be with friends— go out for coffee, lunch, or retail therapy —whatever you can manage — if your husband is up for it, try to ensure he has time with your joint friends and family that is social — not necessarily discussions about diagnosis and treatment. You will both need that kind of normality as you go forward (not always possible, of course, depending on treatments etc). But also let family and close friends know if you or your husband would like to have discussions about what is happening to you both —My adult son and daughter have been great sources of strength. I know you are probably trying to be strong for your husband — but allow yourself to cry on a few shoulders of good friends and family.
You and your husband are on such a difficult journey — you have all my sympathy and best wishes. I will pray for you both 💖💖💖🙏🙏🙏🙏🙏
ZIGZAG
2 Posts

Everyone has given such great tips and ideas, but I wish I had noted how my husband felt each day, maybe on a scale of 1 to 10. It's hard to look back and accurately remember how he felt and what symptoms he had with which drug at a certain time. How often a drug made him dizzy, sick to his stomach, tired, flu like etc. How many days were actually good and how many were very bad. It would make it easier to decide on whether or not to continue with a particular drug.

Charles
103 Posts

My heart goes out to both of you.

Estimating “lifetime” is a dumb game. Prostate cancer tumours mutate, and (usually) develop resistance to whatever drugs are used on them. So treating it is similar to a game of Whack-a-Mole – you never know what will happen next, or when.

I suggest that you find a local local support group for prostate-cancer patients. Some of them will have Stage 4 disease, and will be happy to talk with you about treatments, side-effects, and so on.

Don't be shy. Most groups welcome women, a few don't. The Vancouver group, and many others, have become Zoom-based during the Covid-19 plague. My group in Vancouver has a regular attendee who lives in the Maritimes.

The Canadian Cancer Society has a list of support groups. You can put “prostate cancer” and your location in, and out pops a list of local services (including peer-support groups), here:

https://cancer.ca/en/living-with-cancer/how-we-can-help/community-services-locator

If your husband is faced with androgen-deprivation therapy (ADT – Lupron, and several other drugs), he (and you) might find this online ADT course useful:

LifeOnADT.com

It goes into what to expect, and how you both can best deal with it. ADT has serious effects on male sexuality, and they can be very nasty for couples.

There's a lot to learn, and it's easy to become overwhelmed. I'm afraid that tears are a normal part of the journey.

Stay in touch --

. Charles

DSJ
32 Posts

@Pennylynn Your husband's experience sounds a bit like mine. Three months after a biennial physical exam including a DRE and being told everything is good a had a blood clot in my urine. After a year of diagnosis, including a negative biopsy, I was diagnosed with stage 3 prostate cancer. In a 6 month period I had surgery, radiation therapy and hormone therapy - which continues as of today.

Some suggestions: 1. Your husband should keep a log book of everything he experiences. You may want to keep one too. At the back, keep a section to jot down questions to ask the doctor when you meet them. 2. To help both of you get through the initial shock and depression that comes with this I found it very helpful to write down 10 things I am grateful for each day. Sounds corny but it works. 3. Sign up for the Peer Navigator program offered by Prostate Canada / Canadian Cancer Society. They will connect you to someone in a similar situation to help you “navigate” the maze. 4. Join a prostate support group. They are all over Canada and provide remarkable emotional support as well as offering seminars on many subjects.

Some good news, in the last year there have been some amazing developments in treating advanced prostate cancer which gives all of us renewed hope. The situation today is much better than 5 or 10 years ago.

Best wishes.

DSJ
32 Posts

PS - You may find the prostate cancer forum helpful.

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