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My husband has just been diagnosed with lung cancer

BrendaRae
Posts: 20
Joined: May 2011

I am new here and to have to be here is frightening; I never thought I would be facing such a situation.

My husband was recently diagnosed with lung cancer. I do not the specific type, but it is in the upper lobe of his left lung and a small bit may be present in a small area of his other. That is all I have been told and he knows not much more because we are in the preliminary stages of this. But, the doctor who discovered has stated that he may have a year; that is a speculation based on statistics I guess and yes it scares me.

But my heart tells me do not give up yet and I have placed this in God's hands. I have read the forums here as well as others and I have seen that people have beat the odds even when they were told there was no hope. There is hope in everything even this. My husband is a fighter and said he he is going to fight with all he has in him as he is fighting for me-I consider that to be a very positive attitude and knowing my husband and knowing how much he lives for me I know it will be a powerful factor in this battle.

He is being sent to a very good facility one of the best I am told. Yes this is hard on me especially being that I am having to go it alone right now. He has to concentrate on working at doing all he can do and that is what I want him to do. I asked God to help convince him to go to the doctor after he was feeling bad for some time and God persuaded him and my heart tells me God is the motivating factor in all of this. Something inside me spoke and told me "get your husband to go, for it will be something that will make a powerful difference."

What is also hard is that I also found out my sister died a year ago and when I told my husband I said 'everyone is leaving me" and out of the blue and with a powerful voice he said to me "I am not leaving you baby." I don't know what that meant but my heart tells me to hold on to that very statement.

I thank you all for listening and any support you can offer is appreciated. Please pray for us.

God Bless

Elizabeth15
Posts: 37
Joined: Apr 2011

Your first sentence is what I think everyone of us felt and had pass through our mind when we initially registered here. With time I can now say I am so grateful to have found my spot here. The exchange of fears, wishes, loss, hope, tears, joys, sweet and sad memories any and all emotions, feelings and all else that goes hand and hand with a cancer diagnosis of ones self or loved one is made here without judgement but instead met with understanding, a willingness to listen, share and offer suggestions or just a place to vent with like minds. It is a place laced with grace and a willingness to be a shoulder to cry on when one may feel there is no where else to turn...turning here for me made me feel better and not alone...

Your husband and you sound like my honey and me when we first got the news...I always said I am staying on the sunny side of the street...I had too...I had to march forward head held high...I demanded it from all who came near me and my husband...I refused to let negativity enter any conversation...my husband needed positivity to face the road ahead...I guess it was all I was able to control at that point...We prayed together and alone... my husband was Catholic but I am Protestant...he was always applying holy water...why heck even I started dabbing myself with it...figured it couldn't hurt.

What helped me the most was buying two journals...one for the medical stuff...sometimes so much comes flying at you that by writing it down I had a reference later one as well as when the medical staff sees you writing stuff down it seems to be a little more serious with these two! The second journal was for me...everything I felt, wondered, questions, hoped for and feared...I recorded...I am so so thankful I did that...when I felt things were out of control, scary, good or whatever I wrote it down...when I couldn't say things to my Bob I wrote it down...then it was out of me even if for just that moment. My husband had a cough and did not want to go to the doctors...I had to call and make the appointment and remember telling him I would have been irresponsible if I turned my back...it would seem you had a similar experience with your hubby...guys never want to go to the doctors...good thing you are a take the bull by the horns kinda gal! That attitude will pay off as you go along!

BrendaRae, you and your husband have started on an unenviable journey...journeys take many twists, turns and side roads...finding this forum was a positive part of my journey...I could never imagine saying welcome - glad you are here...but I can say I believe your finding this place was meant to be...God led you here for a reason..so many folks here will listen...I for one am so grateful to have found CSN...I hope it offers you the same comfort it has me...Elizabeth

BrendaRae
Posts: 20
Joined: May 2011

Yes I know God led me hear because he knows I need people who can help me cope. I am a recluse and will not bore you with the details of my existence or emotional disorders.

I am not throwing in the towel and my husband said a year but I don't know if that is his fear talking but somehow I feel the doctor did not say that.

Read my reply to Diana as I have discovered something call actinomycosis that can appear as masses on the lungs and in similar fashions to those like my husbands. A major factor is bacteria/toxins formed by poor dental health and my husband's mouth in in extreme poor shape and he has been playing with his teeth for some time as if there is something bothering him that has not usually bothered him before. I will just have to wait and see but above all I still hold out hope and I thank God for you and everyone here.

God Bless

KLScoville's picture
KLScoville
Posts: 161
Joined: Mar 2011

Hello Brenda,

Once I read about your husband's mouth I just shook my head. Same thing with my husband Mark. Unfortunately he has stage IV nsclc with adnocarcinoma and mets. He is currently on hospice. As he told the nurses and social worker..."it's a guy thing" in regards to going to the doctors at the first sign something is amiss. I am planning on going on a campaign about this "guy thing" and not going to the doctor to get a regular check-up. There are at least 19 tests every man should take when they are nearing the age of 40.

Presently because of Mark's bad mouth and the cancer he now has thrush which is a yeast infection of the mouth. It has gone down his esphogus (sp?) and I have to puree all his food. If your husband is a fighter then he better make sure he takes care of his mouth too! All the tests, treatments and such are going to reak havic because everything is now out of whack.

This forum I use as my journal with my husband, these people are the most caring, blessed people on here and I am glad I found them on this journey as my husbands caregiver.

May God keep you in this time of trial. God Bless!

~Kelly

lekkerone
Posts: 199
Joined: Jan 2011

I think you need a lot more specifics about your husband's condition. What tests has he had? How many doctors are involved and what specialties are they? For a doctor to say he has a year it would seem a lot more has been done than has been indicated. Maybe if you could fill in the blanks we would know what to say to you. Thanks, Diane

BrendaRae
Posts: 20
Joined: May 2011

Diane;
I do not know if it was the doctor who said he had a year. I have only spoken to my husband on the phone and things have been happening fast since I made him go for a checkup. The place where he is I believe has only did preliminary things maybe nothing more than an Xray. I have a feeling my husband is thinking the worst; I know him and somehow something tells me I must get ahold of myself and not jump to conclusions.

I have read up on this alot as you can imagine and have put it in God's hand. It was the Lord who persuaded me to send my husband in and when I did I had this feeling that it was for the right reason and not necessarily to present us with something horrible. That is coming from my heart. I also asked God to take control and promised Him I would put my needs aside for my husband and it gets tough but he is worth it.

Something that has gotten my attention and I cannot say it applies is something called actinomyosis. It can show up as masses in the lungs on Xrays and if often caused by poor dental hygiene and not to make fun but my husband's teeth are in horrible shape and need to removed. And for quite a while now I have caught my husband fiddling with his teeth constantly. For some reason it has caught my attention and now I feel that there could possibly be a connection. Like I said it is only something I found out by exploring.

I thank you Diane and everyone for your support. I am having a tough time but my heart says do not make rash assumptions and I am holding on to that.

z's picture
z
Posts: 1266
Joined: May 2009

Hello, Sorry you had to find us. Has your husband had the biopsy yet, as thats they only way to confirm cancer. There are many treatment options and the drs don't know how long we have. Please keep us posted. Lori

BrendaRae
Posts: 20
Joined: May 2011

Lori;
I don't think my husband has had any biopsy yet, or any type of invasive procedures. It is just pictures this point and speculation is I think erring on the side of caution yet not letting anything go unchecked. I hope that makes sense. Like I said previously I do not think it was the doctor who said a year, I think that was shock being experienced by my husband and that he felt he was automatically doomed. I know that I have to understand things from his point of view and that I cannot be upset that he felt that way.

I am not giving in because my heart says not to. My husband is concerned for me I know, he worries about me incessantly always has. He called me and he sounds good do that is encouraging. I tell him to concentrate on him that I am okay and that I am being looked after by our dear friend and landlord. I think he gets upset because he loves me but even so I must insist and keep on him to keep his focus where it needs to be on him. It is hard at times to know what to say-I want to be mushy, but if I do that could upset him-not good, I want to keep him focused, but without being preachy. These are things I am having to learn to adapt to but I am getting along and I thank all of you for being here. Keep us in your thoughts and prayers and each of you are in mine.

God Bless Each of You and thank God for bringing you to me

SamanthaBrophy
Posts: 24
Joined: May 2011

I am proud of you for your strength in such a hard time. I believe that with the love of his family around and the right treatment there is always HOPE. keep by his side and stress talking about what hes feeling. and you of course. the best way to be there for eachother is to understand eachothers fears. I applaud your positive words about who your husband is, you must let him know everyday that you feel this way for him. you and your husband will be in my prayers and i hope that god will not be ready for him to come. good luck
Samantha

BrendaRae
Posts: 20
Joined: May 2011

My husband had a biopsy today and the doctor called me and said his right lung was cancerous but the left lung is clear. He told me that there was no hope but we are not taking this lying down because we know people do without one lung. We feel this is a bureaucratic/system unwillingness to help and listen to how this doctor acted. He did not even bother to tell my husband at all-in fact he has still not told him and I feel he has no intention of telling him. He called me laid it in my lap and hung up abruptly. Something is smelly here-can any of you tell me how to get a second opinion or get steered towards a place who is more caring than a greedy town hospital establishment that may guide us in this matter. God tells me not to take this lying down. I came here for help and I am asking for it so please if any of you can help an uneducated person please do!

BrendaRae
Posts: 20
Joined: May 2011

My husband had a biopsy today and the doctor called me and said his right lung was cancerous but the left lung is clear. He told me that there was no hope but we are not taking this lying down because we know people do without one lung. We feel this is a bureaucratic/system unwillingness to help and listen to how this doctor acted. He did not even bother to tell my husband at all-in fact he has still not told him and I feel he has no intention of telling him. He called me laid it in my lap and hung up abruptly. Something is smelly here-can any of you tell me how to get a second opinion or get steered towards a place who is more caring than a greedy town hospital establishment that may guide us in this matter. God tells me not to take this lying down. I came here for help and I am asking for it so please if any of you can help an uneducated person please do!

Ex_Rock_n_Roller's picture
Ex_Rock_n_Roller
Posts: 276
Joined: Mar 2011

"He told me that there was no hope..."

I've never heard of a doctor using wording that abrupt, especially after an initial diagnosis. Not only do people do with only one lung, people can make do for some time even without the option of removing a cancerous lung. It really sounds like you need an advocate in your area. Can you get hold of a social worker in the hospital? They could probably steer you in the right direction. That's where I'd go.

With the amount of information you've given, I don't think any of us here will be able to do much more than guess.

cabbott
Posts: 1046
Joined: Aug 2006

Cancer is diagnosed by biopsy. The pathologist and surgeons can look at the cells to see if they look like cancer cells. Cancer cells are regular cells that have gone crazy and they don't look quite the same shape as regular cells. After the doctors figure out that there is cancer, they have to figure out what Kind of cancer they are dealing with. There are many kinds of lung cancer and there are also many cancers of other organs that travel to the lung. Different treatments work on different cancers. They also have to do tests to see how far the cancer has spread. The doctors have to write up reports on all these tests. These reports belong to your husband, so he can get them if he asks. They are written up in medical language so they are sometimes hard for regular folks to understand, but that is where you will find out what you are dealing with.

One common test most folks with cancer have is a PET scan to see how far the cancer has traveled. The test takes about two hours but does not hurt any more than a CAT scan. Cancer cells grow quickly. Growing cells need energy to keep growing. Sugar solutions with some radioactive ingredients are given to the patient to drink. After a set amount of time, the patient is scanned. Spots of cancer light up on the films. That way the doctor can see if the cancer has traveled. If the cancer has moved out of the lung, then doctors do not operate. They will not remove a lung or part of one if the cancer has already left the lung. Lung operations will not stop the spread of cancer if it is already out of the lung and major surgery has its own side effects. Since the operation will not stop the cancer if it is already out of the lung, the operation will not be "worth" the risk of side effects.

Even though doctors will not operate if the cancer is out of the lung, they usually will talk about treatment with chemotherapy. Chemotherapy attacks the cancer throughout the body including the lung. Chemotherapy also has side effects, but if the patient is well enough to stand the side effects, it can sometimes reduce the size of the cancer and lengthen the life of the patient. Yes, there are many patients that have lived a long time with lung cancer that has spread. But there are also patients that were not helped by chemotherapy. Good doctors will try their best to do whatever the patient wants, but they do not have a cure, much to my dismay. If they do not believe the benefits of chemotherapy will be worth the side effects of chemotherapy, they will not recommend it. They still should provide some kind of treatment to increase quality of life and reduce pain, right up to the end.

If this doctor cannot communicate with you so that you understand what is going on, see if another medical person can get the reports and explain them to you. Your family doctor may be able to get copies if your husband will sign to share the details with him. Or possibly your local hospital has a medical social worker that could sit down and explain what tests have been done and what the outcome was.

Doctors cannot change the outcome of the tests. They can only report what they have found.But if they don't have a good bedside manner, can't communicate with you, or seem to have given up before you have started to fight, you should get a second opinion. Most insurance companies not only help with second opinions, they require them. Call your insurance company and see who they recommend. And get those reports to someone who can explain them to you.

Good luck!

SamanthaBrophy
Posts: 24
Joined: May 2011

I just wanted to say thanks. You have probably helped her who knew to contact your insurance company. Also i was wondering about something you said. You said that if the cancer has spread from the lung they wont opperate because its inneffective. But i was wondering, my mother in law has a 5cm mass in one lung and small bits in the other. I was wondering if its possible for chemo and radiation to shrink or get rid of the bits in the one lung so the other lung is opperable? Is it even possible for chemo or radiation to get rid of cancer cells or does it just shrink it? Im sorry im still trying to understand so much so fast.

Thanks Samantha

JUDYV5's picture
JUDYV5
Posts: 392
Joined: Jun 2010

I was told that for the cancer to totally disappear from the chemo is very rare. What happens (if the chemo is effective). It will shrink it. If it shrinks over 25% it is called partial remission. People can stay in partial remission for "months", however, they will grow back.

SamanthaBrophy
Posts: 24
Joined: May 2011

Thanks so much for you input. its hard trying to take in all the information when you have so many questions. So if she has lung cancer now and they tell us that they cant operate then chances are she is going to have cancer in her lung for the rest of her life. does that mean she can live years still if her cancer goes into remission then comes back and she does the treatment again and it goes into remission again. is that possible, or is she going to get treatment now and if she goes into remission she'll be ok until it comes back? can you have chemo and radiation over and over for the same cancer if its working??????????
Samantha

Ex_Rock_n_Roller's picture
Ex_Rock_n_Roller
Posts: 276
Joined: Mar 2011

"Can you have chemo and radiation over and over for the same cancer if its working?"

If it were working, you wouldn't need to have it over and over. The short answer to that is definitely not for radiation -- it does too much damage. From what I understand, it's typically one and done with that, although when I asked my radiologist, he said, "Maybe, if your really beg me" (this guy has a sense of humor). But I'm pretty sure you can't have the same location irradiated more than once. They hit it as hard as you can stand the first time.

I'm no expert on chemo, but the first-line treatment will also wreak some pretty heavy damage on you. I think they typically come back at it with different agents, but even that has its limits.

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

If a doctor told me I only had one year to live before they had done a biopsy and then called and said there was no hope after doing the biopsy I would be seeing another doctor!!

Many people get a second opinion for their own piece of mind, in your case, I would seek a second opinion because this doctor doesn't sound like he is willing to do anything to try to help your husband.

Please keep us updated.

My best to you and your husband.
Glenna

catcon49's picture
catcon49
Posts: 388
Joined: Aug 2008

Prayers on the way.

grannylove
Posts: 183
Joined: Apr 2011

I am in agreement with the others here, that you definitely need to get a second opinion. This present Dr. needs a class in bedside manners, at the least. Most hospitals have a social worker or a patient advocate that you can call and get some one-on-one. Please do not hesitate to call! Time is of the essence. You and hubby need to know about his condition so don't be afraid to ask questions. There are no stupid questions when it comes to life and death decisions. God bless and keep us posted!

BrendaRae
Posts: 20
Joined: May 2011

Hello all;
it has been a while since I have posted, but you all have been good to me and i wanted to update you.
My husband is home now after being in the hospital almost 6 weeks undergoing treatment. It was hell let me tell you hell-for him and me. What upsets me is that we have never really been given any clear cut responses-findings have wavered back and forth-it just seems so swooning-they either know or they don't. They treated my husband but have never really "told" him anything-they treated him like crap-his nerves are shot. When I went to visit on the one occasion they acted like I wasn't even there. It just seems so unfair to treat anyone like this. But, since he has been home he is calm peaceful and has not had any pain whatsoever. Home care was offered but they acted like they really didn't even want to extend that. We have chosen to go on our own as we have in any storm we have weathered. Sometimes I don't know what to think, but I do know that many of you here believe in God's power and my heart tells me do not fear that God is with us-I think my husband are entering into "that part of our journey that couples who are so deeply in love enter into" many don't understand nor can you really explain it but I am at peace in knowing that no matter what black marks we have received God has promised we will never have to be apart because he knows we cannot survive without the other. We may have a dark cloud called cancer over us but somehow I feel that it is not going to be our doom and that something more beautiful is coming to set us free. I hope this brings others peace as well.

mamacita5's picture
mamacita5
Posts: 254
Joined: May 2010

Have they still not told you the type/stage of lung cancer he has? I am so sorry for the poor care and lack of concern you have gotten. What type of treatment did he receive?

BrendaRae
Posts: 20
Joined: May 2011

hello;
No they have not ever given us any clear cut answers. One minute it was supposedly NSCLC then one day supposedly SCLC. I did overhear a doctor speaking with my husband over the phone and it was labeled NSCLC. I just really do feel they consider us to be expendable people, that is the way it is here where we live and many have suffered for it.

But, somehow and don't ask me how we are both at peace. My husband has been comfortable since being home he does sleep a lot and is a little worse for the wear but he has no pain, etc. His nerves are settled and so are mine. When we went into this we agreed that he would go in for the treatment regimen then come home and we would pick up living where we left off and that is what we are doing. We haven't even needed any home care and are doing well on our own. It was offered but they sort of acted like they didn't want to or they just saw that they knew we could fly on our own. It is there is need be is what they told us.

He did receive radiation and chemotherapy, but nothing was said to him or me about any outcomes. I think that our case is different and this is more of a personal journey than anything. Each person on this earth has struggles and trials and each of us has our own way of getting through them-we go with each other and God. It may not be the way for others but as long as a person is at peace with what they feel than that is what matters. After all no one knows anyone better than they know themselves.

lekkerone
Posts: 199
Joined: Jan 2011

I am sorry but none of this is making sense to me. If these doctors are so uncaring, do you not have other choices. Second opinions are quite acceptable to doctors. Are you asking questions and receiving adequate answers? Are you hearing the doctors or just set on doing the journey alone. Please at least make an appointment with your husband's oncologist and get some answers. Write down your questions before you go. I don't want to sound harsh but going it alone is not noble when there is help available.

mamacita5's picture
mamacita5
Posts: 254
Joined: May 2010

Don't go down without a fight. I am a true believer in prayer and all that goes along with that, but I am ALSO a believer in medical science. I have to agree with lekkerone, you MUST become an advocate for your husband if he will not be one for himself. If your oncologist will not give you clear-cut answers then get another one. I ask my doctors anything and everything that comes to mind when I see them, and when I have a question outside of my appointment time I email them. I usually have a response the same day. Please remember they are working for you!

BrendaRae
Posts: 20
Joined: May 2011

Hello;
I wanted to take the time to explain things better. What is truly happening here is that my husband is more or less going through the motions with severe anxiety. He was labeled as being stable as far as his medical situation goes-vitals good, etc. About two years ago he was diagnosed as being schizophrenic (paranoid subtype) which often makes chaotic situations a bit much for him. His refuge from that? Me. I have anxiety but have adapted and learned to take efforts to clam myself, but that is not always easy for others like my husband. So, when he can see I am calm he will come around. He was desperate to get home and the excitement was a bit overwhelming so it is taking him some time to unwind and readjust. I know it is rough and I feel bad but with a lot of love and patience he will calm down and settle back into the home routine. I discussed this with some of his nurses and they understood and noticed that after talking to me on the phone he would calm himself. I just guess that when you love someone you want to take away the aggravation as quickly as possible, but as the Lord says we must have patience and I do I do.

Thanks for listening and pray for us to just relax.

BrendaRae
Posts: 20
Joined: May 2011

Yes I heard the doctors-he is stable and I was told on every occasion I called that he was doing okay-vitals good etc. He is just having problems with his nerves (read response to Mamacita). He is not having any pain at all, and has actually done quite well since coming home but he is just having to take baby steps to readjust and allow his nerves to settle the natural way. He responds well to me-we eat together and we rest together, etc. When it comes to his nerves and support he prefers to rely on me as we share a special closeness. That is why we opted to do his home care on our own as it less stressful and we have all we need, etc. We have a phone number if we need something but other than that we are just trying to unwind.

lekkerone
Posts: 199
Joined: Jan 2011

Believe me you have my sympathy as you seem to be having anxiety issues as well as your husband's cancer. You say in an earlier post that he had radiation and chemo but nobody explained to you the status of the cancer. I still say that you should meet with the oncologist and find out exactly what is next for your husband. Surely that would relieve some anxiety for you both. Cancer is not something that you can or would want to hide from. It needs to be attacked head on. I wish you and your husband well.

stayingcalm's picture
stayingcalm
Posts: 656
Joined: Feb 2007

BrendaRae,

At the very least, if your husband isn't willing to continue under a doctor's care, you might consider calling Hospice. It seems to me you may need some help caring for him eventually, and Hospice can take a lot of that burden off you . Please consider it?
Stayingcalm

BrendaRae
Posts: 20
Joined: May 2011

To all who have responded;

My husband passed away here at home by my side over the weekend. We were happy to have the time we had together and the Lord has assured us both that our separation from each other is only temporary. We will be joined forever together at each others side with the Lord one day-perhaps soon and although once that happens we will not be as husband and wife we are satisfied in knowing the Lord has fulfilled His promise to us in that we will never be apart again-even now. This was very important to us as our journey together is forever and even death has no dominion nor can part us. We started out together at the Lord's side and are truly soul mates bound by all of our unlimited love and dedication to each other and what we wanted. I am truly one of the most blessed women ever to live because I let God lead me-he led me to William and he keeps me with him and even better he will keep me with him at the Lord's side as well.I am having his remains brought home to me and he is with me in spirit and we spend our time "together" each day. We were blessed to have time to prepare and we went to the Lord and said "Lord we know this is coming, and I the wife will give my husband to you as he could not have survived one day without me, and for our faith and belief we rest assured we will be together always and even better at your side-AMEN!!!

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

BrendaRae, at times like this I am always at a loss for words. Please know that I am thinking of you and praying for you. Your faith will see you through until you are together again.

My sincerest sympathy,
Glenna

BrendaRae
Posts: 20
Joined: May 2011

No need to be at a loss for words Glenna; William and I knew our life plan from day one; we had been together since I was 13 years old. He is still with me and we will be together with each other and the Lord perhaps sooner than we think; but all of this has been a great comfort and just goes to prove the Lord rewards those who walk with Him in faith rather than by walking in sight which really does nothing more but to further blind us. Faith is being certain of what we hope for, knowing He will make those promises come true and being certain in what we do not see rather than in what we do here on earth.

Brenda

grannylove
Posts: 183
Joined: Apr 2011

So sorry for your loss Brenda. So glad you have your faith to comfort you in this difficult time. Know that my prayers are with you also.
Cheryl

mamacita5's picture
mamacita5
Posts: 254
Joined: May 2010

Very sorry for your loss, Brenda. Please stay with us for awhile. We would love to hear from you from time to time. Keeping you in my prayers.

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