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Topic: Husbands of Stage IV Breast Cancer

Forum: For Family & Caregivers of Loved Ones With a STAGE IV Diagnosis —

A place where family members, caregivers, and loved ones of people having a Stage IV (metastatic) diagnosis can share, discuss, and support one another through the tough times unique to this diagnosis.

Posted on: Mar 1, 2014 11:27PM

RoyL wrote:

I'm not entirely sure how to start; I don't post, I don't do Facebook and I have no idea how to go about this.

My wife just went through her 2nd round of chemo for her2+ stage 4 breast cancer that also shows in her liver. She's 34.  She's as diagnosed maybe 8 weeks ago

Question is: where is the forum for the husbands?  I need to be there 100% for her but need help balancing this "strength" and (I guess what I'd call) denial.  I also need help knowing what to do, what to expect and how to be there for her.

Any thoughts? Thank you

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Jan 26, 2016 09:47AM DivineMrsM wrote:

Eternal & Trying, as stated in my previous post, I am not a trained therapist. It would never be my intention to become involved in any kind of arguement with either of you regarding the difficulties of your marriage when both of you are hurting in so very many ways. Even tho you both write lengthy posts, I know that there are countless aspects of your relationship I know nothing about. I don't want to know. It's not for me to sort it out and I would never sit in judgement over emotional posts from two people sincerely searching for answers, who are actively seeking positive solutions to their pain. I certainly wish only and all the best for each of you, individually and as a couple. I hope you find the answers you are looking for. You shall both be on my prayer list. Best wishes to both of you.

found lump 12/22/10~er+/pr+/her2- stage iv bone mets~chemo~lumpectomy~radiation~arimidex~ "The world breaks everyone and afterward many are strong at the broken places."
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Jan 26, 2016 04:53PM - edited Jan 28, 2016 01:31PM by Moderators

We too wish the very best for both of you, and hope that you can work through things that are hurting you both. Hopefully you will find the opportunity to discuss these sentiments together, in person, and perhaps with a trained professional.

Warmly, The Mods

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Jan 26, 2016 10:12PM edwards750 wrote:

I am so sorry Eternal for you and your husband and your mother. My mother had BC many years ago. She died 10 years ago but not from BC. My sister and I both have BC but neither one of us is Stage IV and we are both older than you are. I cannot begin to imagine how difficult it has been esp since you are so young.

I sure don't have any sage advice because I'm not in your shoes except I have BC too. We all need help and support. Things we took for granted like driving now have to be done by someone else. Who better than your mother. I wish mine was still living. Your in-laws should be ashamed. It's time for family to pull together.

The thing is we didn't ask for this. It really irks me when people treat us like lepers acting as if we somehow deserved this. Seriously? I know several people whose husbands bolted. Never in a million years did I think those guys would react that way. The sickness part of the marriage vow apparently doesn't apply - it's only words not a commitment. Sad.

I don't know you but I'm praying for you just the same. Try and keep the faith. When it comes down to it it's the only thing we have to hold onto.

Diane

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Jan 27, 2016 11:18PM PatrickG wrote:

Eternal72, and bc husband.

I can't express the sorrow I feel for the both of you. Ma'am you are having to endure what I think as the most difficult thing in a persons life I wish you the best with your treatments and that they work wonders for you. I am also sad to see two people in is situation that can't get along are not there for each other. John Lennon said all you need is love smart man. All you need is love true but love shows itself in our actions thoughts and deeds. Love is a two way street in each passing some rubs off and the others feel it. You have to be able to feel it revel in it and bask in the glory that love can bring one another.

Nobody on here claims to be good at giving advice we are on here to help each other get through some of the hardest times life can bring. You know as well as my wife and I do that these are hard times fraught with pitfalls at any turn. If what the two of you want is to be together than try just that, be together. Forget the past it's done over and finished no matter how many times you go back to it it won't change. The only thing that matters is if you both of you are willing to change things about yourselves the things that have tripped you up in the past. I know I can't give you the roadmap to happiness it different for all of us, but you can get on the road together in love and see which way the roads turn.

If living together can't work and husband you still want to help offer it, be sincere really be there when she needs you. Us husbands (bad English) are only trying to help our wives cope with this terrible disease. We have to think about their needs ahead of our own, my life revolves around my wife she is my sun and I get my energy just trying to help her. I fail as regularly as any other man but try as hard as I can to make her happy. I get worn down and feel sorry for myself at times but think look at her my angel doing all she does all while dealing with being a truly sick person.

We the caregivers really do take a back seat with all this, we are important we have value we are good loving people but still in the backseat. That is ok it good and good to understand that's where we are because it's reality. We are the support system for the most valuable person in our lives. Nobody knows how long we are going to be here so it's incumbent upon us to be the best we can be to live as if we are all dying so that there can be no regrets, no I wish I would haves.

We all have apologies we have had to make thing we wish we could undo some big some small, but they don't define who we are. What defines us is wether or not we continue to do what harms the other. Painful to know but some things can only be forgiven so many time before it can't be again. In other words if you both want to be together finally forgive forget and move on but do not fall back to what happened before.

I hope the best for both of you I want everyone to have what my wife and I have but understand it can't always be that way.

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Jan 28, 2016 12:29AM PatrickG wrote:

Batfax,

Can you update us again on how your wife is doing? I am sitting here thinking of the two of you. I hope treatments are going good. How are you doing? It's hard sometimes talking about all that goes on with our lives. If you need to talk and vent we are here and ready to listen

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May 20, 2018 04:33PM JVanSciver wrote:

Hi everyone,

This is my first post. I'm struggling. My wife is 46 years old. We've been married for 24 years, and we've been through quite a bit. Specifically, my J was an invaluable companion as I lost my sister to pancreatic cancer and my father to esophageal cancer. My brother died of leukemia long before I met her. I never thought that she would be the one to develop cancer. She was diagnosed stage IV de novo in August 2016. She's erpr+, HER2- with metastases to her bones. lymph nodes, and liver. For 13 months, anti-hormonal treatment was effective at containing the disease. However, the tumors in her liver are not responding to treatment, and she's been on three different chemotherapies since December, taxol, jemzar, and now exeprar. But her abdomen is seriously distended and her edema is debilitating. She's now on gabapentin, potassium, and a strong diuretic in addition to her treatment. But the love of my life is not herself, she's exhausted all the time and she's distracted and easily irritable. I get it, and I don't fault her for any of it. I help her to get rest and support her in any way I can. What I'm struggling with is the nagging fear that she is dying already. I've seen it before. The doctor is focused on getting her liver to calm down. She's had 2 treatments of exemprar. Can someone please tell me that this is temporary, that your wives came back after a prolonged downturn? I want to have hope, but I don't want to be irrationally idealistic. I'd rather deal with realities.

Thanks,

Chris

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May 20, 2018 10:22PM DivineMrsM wrote:

JVan, I don’t really have any answers for you. I am so sorry to hear what you are currently going through and what you have dealt with in the past. Some things you already know, like you can only take this one day at a time. No one can say what the future holds for you and your wife, so living in the moment is where you are. I think I understand how you want to hold on to hope that things will turn around and yet want to remain realistic about things. You kind of have to find a place where you are comfortable with all of these conflicting emotions swirling about. One thing you may find helpful is to write or journal your thoughts every day, about three pages of,your thoughts. No one ever has to see the pages. But writing can help sort things out in your mind and heart and can be very comforting. My best to you and to your wife.
found lump 12/22/10~er+/pr+/her2- stage iv bone mets~chemo~lumpectomy~radiation~arimidex~ "The world breaks everyone and afterward many are strong at the broken places."
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May 21, 2018 12:28PM edwards750 wrote:

Bless your heart Chris you are such a loving husband. I wish I had answers for you but I don’t either.

BC is not a one size, fits all disease. I’m not familiar with those drugs because I didn’t have chemo. I do know women who have and had to change their meds regularly.

One day at a time sounds lame but it is the best suggestion for your situation. There just isn’t any way to know for sure whether the drugs will take until they don’t.

You aren’t alone because we are all here for you and also you might try and find a support group. I have one and it was a godsend.

It’s hard to watch a loved one suffer. I know you feel helpless and scared but I’m sure your wife’s medical team is doing everything they can.

I have a friend in my group who was recently DX with Stage IV BC. Actually she had BC a few years ago and it came back and metasized to her hip. She found a psychologist with the cancer center where she has treatment and this lady has been helpful. Not so much a cheerleader but a good listener.

Keep the faith and keep us posted.

Diane

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Jan 3, 2019 12:45PM jhj0112 wrote:

Hello,

I don't know where to find someone like me and this thread seems to be the only place for me. I have been lurking for a while and am hoping that I can get some support. I'm a husband of 42 yrs old wife who got diagnosed stage IV recurrence about 3 weeks ago. She was diagnosed LABC in May 2013 and had been healthy until few weeks ago when sudden groin pain hits her with limping.

With Radiation completed, the pain has almost gone but she is still limping and we(including RO) can't figure out why. we used to walk for an hour everyday with our dog but we can no longer do that. this really crashes me and my wife.. Things that we used to do, we can't do it together any more.

We have 2 young daughters 12 yrs and 10 yrs old. they know cancer is back ( I told them calmly) but don't know it is bone mets. I don't know how to break the news or if I have to explain them in detail.

I have a full time day job and my wife is tutoring kids. I'm taking over her tutoring after my day job to get ready when/if she can no longer work.

I have trouble sleeping since the news. it is more of passing out for 1-2 hours and waking up again...

I'm sorry if what I type does not make sense.. I just wanted to get these off my chest... I try to take day by day approach but I already start hating our new daily routine(more work, less activities with kids).

How you (Husbands) deal with these? I'm sure I'm the not only husband who is going through this... It will be another busy & exhausted day...

Husband/Caregiver Dx 4/10/2013, IDC, 3cm, Stage IIIC, ER+/PR-, HER2- Chemotherapy 4/28/2013 AC + T (Taxol) Surgery 10/30/2013 Mastectomy: Left, Right Hormonal Therapy 12/12/2018 Femara (letrozole) Dx 12/13/2018, IDC, Left, 5cm, Stage IV, metastasized to bone, Grade 3, ER+/PR-, HER2- Radiation Therapy 12/20/2018 External: Bone
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Jan 5, 2019 10:50AM - edited Jan 5, 2019 11:18AM by Godspeed

jhj0112,

Sorry to hear about your wife's newly diagnosed Stage 4 BC. From your e-mail it sounds like you are trying to handle the situation as a good man should do.

Addressing the sleep deprivation and worry may be first on your plate to be able to help everyone else. Like the stewardess says on the airplane, in case of emergency secure your own mask first before helping others with their mask. This is needed so that you can continue to help.

Worry will really screw things up if it isn't addressed. For me I still start to worry, but I have to stop and discern whether it is simply worry or really a concern. Worry is when a mind concentrates on things the individual can't address. For instance, “how can I cure my wife's cancer" or “what if she dies and I have to start my life over" or “will my employer try to phase me out when they find out about my wife's cancer" (which actually happend to me). These may be able to be addressed in the future, but it doesn't need any thought in the middle of the night when attempting to sleep.

Concern is more constructive. It starts with a worry but it can be addressed with actions. Concern is more like “do we have our list of questions together for the ONC and the information requested by the ONC", “"did weget the paperwork in to the insurance company", “did my kids finish their homework", “do we have an advanced directive and will set up" and “did I hug my wife today and assure her that I will never leave or give up on her".

Sometimes I wake up in the middle of the night with thoughts that I think are very important, which threatens my sleep. To address this I will grab my phone and set an alarm with a reminder for the next day for the thought described. This allows me to go back to sleep knowing that I can think about it when I am fresh and more capable to address it. I then pray for discernment and go back to sleep. A lot of times I look at what I wrote in the night and realize it was worry, not concern, which drove me to awake. Sometimes it wasn't worth writing about

I don't have good advice for your particular issues above, the circumstances would be too detailed for me to make a call for you. I do know that if you get sleep then you will make better decisions.

BTW: When my wife was first diagnosed with stage 4 I thought she may not be around in a few months (could have been true). This moved me from worry to almost panic, with very little sleep. I ended up in the hospital with kidney stones, a burst appendix, and gallstones which may have been worry driven. In March my wife will have had 7 years since her diagnosis. Every 3 months we find out if we may get 3 more - it's the new reality. I find that my biggest concern now is trying to find ways my wife and I can enjoy the time we have. I still wake up in the night but my goal is trying to get back to sleep as soon as possible.

Husband/Caregiver------- \Gód•spêd\ n (1526) phrase - used to wish somebody a safe trip or successful endeavor Dx 3/8/2012, DCIS, 2cm, Stage IV, Grade 2, mets, ER+/PR+, HER2- Hormonal Therapy 3/8/2012 Aromasin (exemestane) Surgery 3/22/2012 Lumpectomy: Left Radiation Therapy 4/12/2012 External: Bone Hormonal Therapy 5/7/2012 Arimidex (anastrozole) Hormonal Therapy 8/1/2013 Femara (letrozole) Hormonal Therapy 12/23/2014 Fareston (toremifene) Radiation Therapy 12/29/2014 External: Bone Hormonal Therapy 6/30/2015 Femara (letrozole) Radiation Therapy 8/31/2015 External: Bone Radiation Therapy 10/5/2015 External: Bone Hormonal Therapy 12/31/2015 Faslodex (fulvestrant) Radiation Therapy 2/29/2016 External: Bone Surgery 5/9/2016 Chemotherapy 5/17/2016 Abraxane (albumin-bound or nab-paclitaxel) Surgery 5/20/2016 Chemotherapy 8/9/2016 Gemzar (gemcitabine) Chemotherapy 9/1/2016 Xeloda (capecitabine) Chemotherapy 4/10/2017 Halaven (eribulin) Chemotherapy 7/24/2017 Taxol (paclitaxel) Targeted Therapy 3/23/2018 Verzenio Radiation Therapy 11/13/2018 External: Brain Radiation Therapy 1/4/2019 External: Brain
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Jan 5, 2019 11:56AM pajim wrote:

Godspeed, that's a lovely lovely post. And so true.

jhj, radiation causes changes to the body for months after it's over. Things are still happening with her leg. Can you get physical therapy? That might address the issue that you are bringing up.

But of course that's only a symptom of the entire picture. Your fear, anxiety, everything -- they're perfectly normal. Your wife feels them too. So long as you are talking to each other you'll do fine. And if YOU need help, get some. See your doctor and ask for some antianxiety meds. Or some sleeping pills. Just to get you over the hump. We make that suggestion a lot to newly diagnosed women. I took sleeping pills for 6 weeks after I was diagnosed. After a while I didn't need them any more.

I hope your wife's treatments kick the cancer to the curb and that she can soon walk properly again. You're in a tough spot (as are we all). Many hugs to your family.

Dx 4/20/2008, IDC, Right, 4cm, Stage IIIA, Grade 2, 1/15 nodes, ER+/PR+, HER2- Dx 2/1/2013, IDC, Stage IV, metastasized to bone, mets, ER+/PR+, HER2- Hormonal Therapy 2/27/2013 Femara (letrozole) Hormonal Therapy 4/22/2013 Faslodex (fulvestrant) Targeted Therapy 2/25/2016 Ibrance (palbociclib) Chemotherapy 6/19/2017 Xeloda (capecitabine) Targeted Therapy 8/15/2018 Verzenio Hormonal Therapy 8/15/2018 Faslodex (fulvestrant)
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Jan 5, 2019 04:15PM DivineMrsM wrote:

jhj, I agree with the good advice already given here.

As pajiim said, perhaps effects of rads are affecting your wife. You definitely have to shift into a lower gear, but it may be only temporary until your wife processes the stage iv diagnosis and whatever physical issues she has and can move forward. In the meantime, try to stay as in the moment as you can. Deal with what is in front of you and not the future which you can’t see or predict.

Try your best to find a little time each day for soemthing light hearted. A good tv show or movie or some music. For you and your wife. And your kids. And if you cannot walk with the dog, take a drive, maybe take the dog to a big area it can play while your wife can see from the car. Try to get out in nature as much as you can. It has healing effects on the spirit.

You are smart not to give too much info to the girls. Just play that by ear and trust your gut.

Best wshes to you as you, too, process the latest healh matters of your wife.

found lump 12/22/10~er+/pr+/her2- stage iv bone mets~chemo~lumpectomy~radiation~arimidex~ "The world breaks everyone and afterward many are strong at the broken places."
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Jan 7, 2019 02:30AM - edited Jan 8, 2019 12:37PM by jhj0112

@godspeed, Thank you so much for your words.. Your wife case is really encouraging!

The last time I seeked for help, I felt like sleeping pill or antidepressant did not help me at all. I don't want to be dependant on them.

your post is the one which helps me the most as I now know that I'm not alone on this..

I will print it out and carry it with me.

As for me, panick+worry+ concern are all mixed.

I keep saying myself " Be thankful that she is not in pain, we are having dinner together TODAY, don't think about tomorrow" but it hits me hard when I lie on my bed looking at her...

I try music on the headphone to sleep but waking up everytime it stops.. I guess I will get used to this..

@pajim, @Divine, Thank you for your posts.

my brain knows this is like marathon and have to get myself better first but my heart is not following my brain..

Bone biposy will be done on Tuesday then CT scan on 16th.. I hope it all gives me the good news..

Thank you all for taking time to read my post and posting yours! it means a lot to me.

Husband/Caregiver Dx 4/10/2013, IDC, 3cm, Stage IIIC, ER+/PR-, HER2- Chemotherapy 4/28/2013 AC + T (Taxol) Surgery 10/30/2013 Mastectomy: Left, Right Hormonal Therapy 12/12/2018 Femara (letrozole) Dx 12/13/2018, IDC, Left, 5cm, Stage IV, metastasized to bone, Grade 3, ER+/PR-, HER2- Radiation Therapy 12/20/2018 External: Bone
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Jan 7, 2019 12:44PM LoriCA wrote:

My heart goes out to the husbands on this thread. My husband almost had a breakdown after my diagnosis and there are so few support services for caregivers. I think that in many ways it's harder on the spouse than it is on us, most of us learn to make our peace with it but our husbands have to stand by and watch our suffering while everything is out of their control. But once we both got our feet back under us and found our path, it brought us closer together and strengthened our relationship.

One thing I would like to suggest - anyone with a Stage IV diagnosis qualifies for a palliative care program (which shouldn't be confused with hospice). Most palliative care programs don't just focus on the patient, they provide support services for the whole family, including mental health, psycho-social, and spiritual support depending on wants/needs. Maybe something like a caregiver support group so you can talk with others who are going through the same thing would be a good fit. I believe that Canada has similar programs to what we have in the US. I'd encourage you to look into it. We Stage IV people need our spouses to take good care of themselves so we can spend as much quality time together as possible, and we worry about you a lot.

Hugs and best wishes to both of you jhj0112.

IBC Stage IV de novo - presented in right breast, within days spread into left breast, skin, chest wall, metastasized into brachial plexus (lost complete use of right arm for several months), liver and throughout skeleton. Dx 9/8/2017, IBC, Both breasts, Stage IV, metastasized to bone/liver/other, Grade 3, ER+/PR-, HER2+ (IHC) Chemotherapy 9/25/2017 Taxol (paclitaxel) Targeted Therapy 2/5/2018 Perjeta (pertuzumab) Targeted Therapy 2/5/2018 Herceptin (trastuzumab) Chemotherapy 11/25/2018 Taxol (paclitaxel) Radiation Therapy 1/29/2019 Whole-breast: Breast, Lymph nodes, Chest wall
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Jan 7, 2019 01:39PM KatyK wrote:

Lori, yes this awful stage IV diagnosis happens to both of you in a relationship. My DH and I have been together many years and have a very close relationship but this diagnosis has caused us some emotional difficulties that we are working on. I do see the palliative care team and it’s nice that the doctor is my husband’s internist, kind of a nice fit. I would love a support group for couples going through this, alas my cancer doesn’t even have a support group specific to a stage IV diagnosis. There is a support group at another hospital that I may try. I actually think there is a lot of support for caregivers, as there should be. Where I get treatment all the services are also available to the caregiver - counseling, psychiatry, palliative care team, massage, acupuncture, etc. I use caringbridge.org to keep folks updated on my health and there are great resources there for caregivers. I also find many articles about caregiving. I do see a gender difference(being a bit sexist here) in that women tend to reach out more to others for support than men do. Not easy being in either shoes. My DH and I do our best to communicate and be in the present moment. No road map for this “journey” but we all muddle through the best we can. It is so helpful to have a caring partner, I could not do this without DH.
She believed she could, so she did. Dx 7/2017, Stage IV, metastasized to bone/lungs, ER+/PR+, HER2- Hormonal Therapy Femara (letrozole) Targeted Therapy Ibrance (palbociclib)

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