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hubby stage iv. don't know if I can stay strong.

alexinlv's picture
alexinlv
Posts: 194
Joined: Jul 2010

Hello all. my husband "graduated" to stage iv yesterday. 4 lesions found on his liver. originally diagnosed in Nov. 2009 had a resection and chemo. he's going for the pet scan this week and will start chemo on Friday. he is 46. we have 3 children ages 17, 15, and 11. we are devasted but he is a fighter. definitely nervous for what the pet scan might show. I've found support reding posts in the past and need support as a spouse. I am losing my mind today. I dont think I can be strong for everyone again , and I don't wantto be strong. I'm f@&$!! scared. will he be around next year? what's going to happen. I'm a nervous wreck. he on the otherhand went about the day chatting with other parents on the soccer field and putting on his happy face. I am happy he can do that but I worry about. what he's really thinking. thanks for letti g
e vent

tootsie1's picture
tootsie1
Posts: 5065
Joined: Feb 2008

Vent away, dear! You've have devastating news, and you need to find a way to get through it. Go outside and scream, find a quiet place to pray, whatever works for you. And you're welcome to come here and vent all day, if you need to!

*hugs*
Gail

alexinlv's picture
alexinlv
Posts: 194
Joined: Jul 2010

Thank you Gail! yep, I can't really vent to hubby or kids! although I am so worried about the kids. my 15 year old caught had a really bad time went we went through this in 09. my 11 year old keeps everything inside. I'm irritable at my best friend because she reacts in a way thatI feel is insensitive. and what to say when people ask , "how are you doing?". I do want to scream

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

it seems he is in an excellent attitude and that's a good way to start to get cured. I'm sure you can do it you have done it before and now you got here a big gang of friends to help you and listen your fears .
Be strong my friend you have done it before!

alexinlv's picture
alexinlv
Posts: 194
Joined: Jul 2010

Thanks Pepe! I will try to be strong and won't vent in front of him. btw We are huge FC Barca fans! We never miss a game and would die to go to Barcelona!

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

You're invited!

Brenda Bricco
Posts: 579
Joined: Aug 2011

I know what you mean about insensitivity... I have been floored by what some have said to me as the wife. I had one "friend" (a cancer survivor even) say to me "oh it spread to the liver??? He's a goner" I think I was in shock when she said it, still can't believe it.
I have children very close to the same ages as you so I know your torment. I know that I have been on the "edge" many times and wondered where I would get the strength to go on. I try to take it a day at a time but somedays I have to do it an hour at a time because a whole day is just too much.
There are some amazing people in this group that just come along and pick you up, they don't know you or where you are from but for some reason GOD has given them the spirit that just want to help.
Vent away! I doubt that you could offend anyone and I hope I never do either. :)
Brenda

alexinlv's picture
alexinlv
Posts: 194
Joined: Jul 2010

One hour at a time is great advice! I know I will be visiting this board a alot! I can tell what a loving support group it is already. thank you. it's hard to k ow how to help my children. I am scared for them. I lost my mom when I was 18 and don't want them to go through the same thing.

Buckwirth's picture
Buckwirth
Posts: 1271
Joined: Jun 2010

Hi Alex,

Mets to the liver are sometimes treatable, with curative intent, via surgery.

Even if your husband is not a candidate for surgery at this time, there are other options, like chemo and SIR-Spheres which can shrink the tumors and may open the possibility of surgery in the future.

Even with that, the treatments for mCRC (metastatic ColoRectal Cancer) have come a long way, and a patient diagnosed after 2004 has a 150% better chance of being alive in five years than one who was diagnosed in 1999. There is a good chance your husband may see all of his kids graduate high school, and possibly college, even if they do not cure his cancer.

Some things to look into now though. Does he have a Long Term Disability plan at work? I went for a year and a half working through my treatments, but recently made the decision to retire (at 53). I am able to do this because Social Security Disability considers mCRC to be an automatic qualifier, and my employer had a good LTD policy that I can take advantage of. Disability retirement also removes any penalties for accessing 401k funds prior to the usual retirement age and, if you have life insurance through his employer, there may be the possibility of collecting some of those funds early to cover things like COBRA expenses.

As a caregiver, look into support groups via LIVESTRONG and the American Cancer Society. Schedule time for yourself, and make sure you get any assistance you need. I highly recommend scheduling a night out with a good friend, or even a weekend away if you can arrange it. It is a hard job, and often one that goes unappreciated when speaking with friends and relatives. For the moment, it sounds as if your husband can handle the kids for night or two.

Speaking as a patient, we have lots of good days, and it is helpful if our caregivers grant us credit that we are able to care for ourselves, at least part of the time.

There is a member on the Head and Neck board with the username soccerfreaks (Joe, and he is also the moderator of the chatroom here). He keeps an interesting blog, and I read it from time to time to remind me that my battle with cancer could be a whole lot worse. He has a lot of humor, and writes well, so I recommend looking it up.

This is not good news, but you can get through it. There is help, and there is hope.

Blake

alexinlv's picture
alexinlv
Posts: 194
Joined: Jul 2010

Great info, Blake. lot to think about and good questions to ask him. I wonder, do mets to liver typically respond to treatment ? he has 4 mets. is that bad on the scale for treatment? what to expect far as physicalsymptoms because of the liver mets? he's not a candidate for surgery yet. doing oxipilatin, avastin and the other one that I can't think of the name right now. thank you! Alex

laurettas
Posts: 372
Joined: May 2011

Blake, I wasn't aware that disability removes the penalty for early withdrawal from 401K plans. Does that same apply for IRAs? My husband has been retired for a few years so all of our retirement is in IRAs now. Hope that the penalty is removed there as well. That will make things a little easier, money wise.

Buckwirth's picture
Buckwirth
Posts: 1271
Joined: Jun 2010

Double check with a qualified financial adviser, as there may still be certain restrictions (such as SSDI vs private LTD or disability pension).

Also check on any employer funded life insurance policy that may have existed at the time of disability retirement. In most states these continue to be in force even without funding and there may be a possibility of obtaining some of those funds now.

laurettas
Posts: 372
Joined: May 2011

Jake is on SSDI so I presume the tax breaks will apply. Need to remember to ask that when tax season arrives.

Lovekitties's picture
Lovekitties
Posts: 3372
Joined: Jan 2010

While cancer has been in your lives for a while, this latest news has to have been a blow to you all.

Given your situation, you might want to seek some family counseling targeted for those dealing with a cancer diagnosis. Check with your local American Cancer Society and with your local hospital and docs. You and yours do not have to travel this emotional road alone.

Vent here as much as you need, but please find someone locally who can help you and your family through this trying time.

Prayers for you all.

Marie who loves kitties

alexinlv's picture
alexinlv
Posts: 194
Joined: Jul 2010

hi Marie. yes I am not waiting for counseling/support group this time. thank you for your support! alex

marqimark's picture
marqimark
Posts: 242
Joined: Jun 2011

The doc that did the colonoscopy came out and told my wife and I that I had cancer.
My wife cried, I said "okay".
I figured I was so young (55) the cancer couldn't be too far along.
My wife started crying when the surgeon told us that there were 4 of 33 lymph nodes involved.
She had done the research and knew that wasn't good.
I, on the other hand, was ignorant and had to ask if that was bad.
Ignorance is bliss in my case.

My point is, the spouse feels less in control, less able to affect the outcome of treatment.
Myself, I just decided to push forward and do the chemo, no big deal (which kicked my butt and I missed 5 months of work).

You are, emotionally, in a worse position than your husband.
You have no control and he does.
We may have no control over our cancer, but it is "our" cancer.
Ownership gives us an advantage over the beast that loved ones can never have.

If I do not make sense then I do not communicate well.
If I do not make sense then I am the only one that believes in what I am trying to say.
If I do not make sense then I am delusional.

Best wishes and prayers
Mark

alexinlv's picture
alexinlv
Posts: 194
Joined: Jul 2010

exactly! wow! you said it exactly right. I totally get it! and that's how I feel. I am soooo grateful for this board. thank you! alex

keystone's picture
keystone
Posts: 134
Joined: Dec 2010

This is so true. I also am the wife to a cancer patient. He is cool as a cucumber and I am at times (not all of the time) a basket case. It is wonderful that you recognize this. I am a "fixer" by nature. This I just can't fix. I truly believe every patient needs to have an advocate to look out for their best interest but the fear of losing your spouse of 30 years is a lot to take. I'm trying to trust that God has a plan and whatever that may be its a perfect one. Stephanie

laurettas
Posts: 372
Joined: May 2011

Mark. I had not thought everything through quite the way you put it but I see the validity of it. Gives me something to think about, for sure.

tko683
Posts: 265
Joined: Aug 2011

I can totally relate to how you are feeling. My husband was also diagnosed with stage 4 in June with 6 lesions on his liver. He was only 51 and we also have 3 children, ages 22, 19, and 14. I was also diagnosed with stage 3 cancer 7 years ago so this is the second time we are having to deal with advanced cancer. I am beyond scared for him and our family. He has never been sick in his life so this is all new to him. People keep telling me to be strong and I try. I just have to keep reminding myself to be strong and not let him see me upset but it is very very hard. My husband went through a time when he was kind of in denial and shock and acted like everything was fine but now he is in the next stage when he keeps saying he is dying. Did they tell you what side of the liver the lessions were on? They told us that if they are all on the same side they can do surgery and remove that part of the liver with good results. Sending your prayers for strength to get throught this. This board has so many knowledgable people with helpful info. Hugs to you. Teri

alexinlv's picture
alexinlv
Posts: 194
Joined: Jul 2010

thank you , Teri. I would have to lok at the reports to see what side they are on. how's your husband doing now? Alex

tko683
Posts: 265
Joined: Aug 2011

Alex,
My husband is actually doing well. He has good days and bad. Today we met with a liver surgeon. They believe that they can remove the lessions with surgery so that is good news but it seems like his treatment plan keeps changing. It is hard trying to understand all the information. Sending you prayers to stay strong.

here4lfe
Posts: 306
Joined: Jan 2010

Welcome to the board. My wife is Stage 4, diagnosed in July 09. I fully expect her to be here next year! There are a lot of ways to treat liver mets, as you and your husband will find out.
Hang in there, and come to the board for support and advice.

Best

alexinlv's picture
alexinlv
Posts: 194
Joined: Jul 2010

That's great news. what has it been like for her?

here4lfe
Posts: 306
Joined: Jan 2010

No one believed she was undergoing chemo she was so upbeat. The only time she got down was on this new regime of Xeloda, Irinotecan, Avastin, but she bounced right back. Just try to keep your husband's spirits up, follow his lead, and take care of yourself. It's not selfish. You are no good to him if you do not take care of yourself.

Best

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

Hi Alex,
I'm glad you've found us and I hope you can get some good support. Everyone has shared good stuff with you. My husband was diagnosed with stage 3c in January 09 and we had clear for a few months but then stage 4 in January 2011. He is on Folfori + Avastin every two weeks. It is hard on him, very hard during chemo. However, we are living a wonderfully full life. Tonight we went to our neighborhood park and watched surf movies with our neighbors under the stars. My point is that the stage 4 diagnosis is shocking and incredibly scary. However, you will have many wonderful days with your husband and so will your kids. I am planning on many years with my husband. The truth is we never know. BTW our kids are 17 and 14.

Keep in touch.

Aloha,
Kathleen

alexinlv's picture
alexinlv
Posts: 194
Joined: Jul 2010

Thank you Kathleen. I hope he has the strength and determination to live life fully during this time. I do remember thinking when I first joined the board, although I never posted, that you and I had a lot in common. children, time of dx, aren't you a teacher too? well I just wonder what the road ahead will be like. that's the scary part. take care, alex

keystone's picture
keystone
Posts: 134
Joined: Dec 2010

My husband is stage3 but we are also waiting to get a PET in a couple of months. He had no apparent mets to his organs but had a groin lymph node light up on his first scan. They brushed it off but the fear that it was something haunts me. This is tough, we as wives want our husbands well, whereas they seem to roll with the punches much better. My husband does no research and maybe I should not either but its all part of my wanting to be in control. My husband is also 46 and we have 2 grown daughters (we started young lol). I'm trying very hard to give this to God and understand that there is nothing I can do to change the situation. If you ever need someone to talk to message me and I'de be glad to send you my number. Even though our girls are grown I just can't burden them because they are "daddys girls". You do feel as if your going to lose your mind at times.... I understand!! Stephanie

Katteraus's picture
Katteraus
Posts: 3
Joined: Jul 2011

I was diagnosed with cancer and needed to vent! I stumbled upon this website and if you haven't already been directed to it but on the left side of the page you will see the word "Chat" click on it, its a chat room to where you will find that your not the only one. I hope it works for you, it helped me so much and have met so many people. Take care and hope to see you in the chat room!

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

the worst kind of graduation.

RE I dont think I can be strong for everyone again ,

I think we are all stronger than we realise.

You cannot defeat your fears without honestly facing them.
so venting is really really good.

we are all here for you.

hugs,
pete

farmgirl500
Posts: 8
Joined: Sep 2011

So many strides in treating colon cancer. Stay strong and see what the PET scan shows to know what you are dealing with. You can't always be strong...it's okay to have those moments of weakness and doubt. You sound like those are few and far between but you can't pretend not to have them. I think the waiting for the PET scan results is the hardest. Hope that nothing shows up and that you are just dealing with the spots on the liver.

I had a resection and chemo myself and finished up chemo last year in July. CEA went up and had a PET scan done which showed nothing but a small (eraser size) spot on my liver. I am confused as to what constitues Stage IV? I was Stage 2 bordering on Stage 3 in my initial diagnosis with cancer cells in 4 of my lymph nodes. Are you considered Stage IV if you have a spot on your liver? Surgeon said it is so small that he is fine with chemo before surgery and again after or just doing the surgery and then chemo after. Spot is on right lobe and surgeon says he can remove it laproscopically. I meet with oncologist tomorrow.

Buckwirth's picture
Buckwirth
Posts: 1271
Joined: Jun 2010

Technically, you will always be stage 2, but now you would be stage 2 with metastasis, or just mCRC.

There is no difference with stage 4, it is just a method used by NCI and CDC to measure the effectiveness of current treatments and to track survival statistics by stage.

Making up numbers here, but if I restaged up, the survival rate for Stage 2 would be 100%. By keeping it Stage 2, with metastasis, the 1% that do not make it change the rate to 99%.

The good news for you is that you are a candidate for surgery. Surgery of mCRC metastasis to the liver is done with curable intent and has a very good success record.

Hope that makes sense.

alexinlv's picture
alexinlv
Posts: 194
Joined: Jul 2010

thank you for the info and encouragement. he's getting his PET scam right now. How long do results take?

Buckwirth's picture
Buckwirth
Posts: 1271
Joined: Jun 2010

I have had results at my Onc the next day, others have had to wait two or more weeks...

Do you have an appointment coming up? If so, the results should be in in time for the consultation.

alexinlv's picture
alexinlv
Posts: 194
Joined: Jul 2010

omg. two weeks would be torture! yes, we have an appt on Friday. what do you think would be considered big tumors in the liver? thx. alex. oh and will the pet scan confirm the lover ct scan results?

Buckwirth's picture
Buckwirth
Posts: 1271
Joined: Jun 2010

On liver tumors (never had one). The PET will confirm the CT results, they should give a 3D view and will show the levelof activity (described as "uptake" in the summary).

judman92
Posts: 31
Joined: Jul 2011

I'm a 36 yr old and I am stage 4 with colon cancer and multiples mets on my liver. This has been a crazy summer for me. My chemo is working very good for me I have already killed half of my cancer cells and my last liver scan looked 30 to 40% better. There is hope out there and like others have said even if it's not operable right now does not mean that it won't be later. I have turned to my family and friends for support and it sounds like your husband already has a lot of support. I will keep him in my prayers and you just have to believe that there is hope and great doctors that are treating us.

taraHK
Posts: 1961
Joined: Aug 2003

I am sorry you have had this news and that this is happening to you all. I don't want to sound all "Pollyanna" but I'd like to say that it is possible to live for a long time after moving to Stage IV -- and to live a life of quality. I was initially diagnosed Stage III rectal December 2002. Surgery plus chemo. I 'transitioned' to Stage IV about two years later (spring 2005?). Six years ago. I've had several relapses (lung x 2 now bone) and have been in and out of surgery and chemo. But I believe I am living a great life. I'm still working, I travel periodically, exercise, see friends and lead an active life -- albeit one with a lot of naps! I've lived to see my kids (age 10 and 12 when I was diagnosed) finish high school, start college and develop into wonderful young men. I have an oncologist who listens, thinks and whom I trust. Life is good! Hang in there. Keeping breathing out as well as in!

Love,
Tara

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