Jump to content

I am new here, but came here because I am confused and angry


Recommended Posts

Please forgive me if I fumble for words or don't seem to explain clearly. This is my first experience with cancer.

My father in law was diagnosed with lung cancer 2 months ago. I just found out last night that it is SCLC and that he is terminal. They have said he won't make it until July. My husband is devastated, the whole family is.

When first diagnosed, my fil had a tumor in one lung and it had spread to the brain in the form of 3 lesions. The plan was to irradiate the lesions and treat with chemo. The prognosis wasn't good, but we thought that we had a fighting chance.

My husband and I saw him a month ago, right after the first round of chemo (3 days of chemo, 4 days off) and he was doing so well. He didn't have any side effects and his appetite had returned in full. We felt so positive!

2 weeks later, as he was finishing up his 2nd week of chemo(he had a week off), he just went nuts. He became very violent and aggressive. We had been noticing slight changes in his behavior, but chalked it up to the steroids. He was hospitalized, they did a CT scan, which showed that 2 of the lesions had disappeared, the third had shifted to the frontal lobe, and they felt it was affecting his behavior. This was 2 weeks ago and he was sent to a psych ward until they could get a handle on his behavior.

He has been in the ward for 2 weeks now and has not received chemo. Last night the Doctors told us there is no hope for him and they are sending him home so he can die there.

I am so confused about this whole thing. About how this could just pop up and take this wonderful man in 2 months. He was in and out of the hospital about 8 months ago for a prostrate infection. The Doctor's say that there was no sign of the cancer then, but I don't know whether or not I believe them. Is it possible that they just didn't do the right types of tests? He smoked 2 packs a day for the last 30 years, why wouldn't they think to look for that.

I am sorry that this is running on. I feel like I am dreaming. I don't know what to do. I have never been this confused in my life. Is there really no way to fight this?

Link to comment
Share on other sites

Dear Spazzums,

I'm sorry I am not as familiar with SCLC as many other members of the board who will, I don't doubt, have more detailed information for you, but I would really suggest seeing other doctors for second or even third opinions on your F-I-L's treatment ASAP. Praying for you all.

(BTW, way cool signature! :lol: )

Link to comment
Share on other sites

You definitely need to get a second opinion. SCLC grows very quickly and you've no time to waste! Either get him or his medical records to another doctor, one who specializes in lung cancer. I know how you feel about all this coming on so suddenly. My dad had a sore throat that turned out to be Lung Cancer! He went from "Healthy" to super sick in just weeks! He is stable now, but boy it's been a bumpy ride. You get your second opinion and write back. We really do care here.

Link to comment
Share on other sites

Thanks for being so understanding everyone. Reading back through my msg, I can see that I am not thinking too clearly right now.

I have tried to encourage the family to get a second opinion. But they won't budge. They insist that he is being treated by the best Doctor's we have around. We live in Pittsburgh and he is working with a team from UPMC.

It has been very difficult to get information from my Mother in Law or my husband. They just don't like to talk about stuff like this. It looks like my FIL will have to remain "in the system" and stay in a hospice or something like that, I guess that is what the social worker is recommending.

Link to comment
Share on other sites

Spaz,

Welcome to the sight.. sorry about your Fil ... Cancer sucks.. My Mom has SCLC too.. Shannon and Mike are good to talk to .. i think she was online early but she usually posts under SCLC section... She has exp with Mike SCLC with brain Mets.. What about the gamma knife..? Can they use that on the tumor?? You have to research.... and don't give up!

Laurie

Link to comment
Share on other sites

Spazzums, I agree that a second opinion would definatly NOT HURT. I am so sorry that things are going so terribly right now. Have you looked into Gamma Knife for the brain mets? My dad had it, and, according to his neurosergion-WHERE THE TUMOR IS (or tumors if applies) are NOT an issue in whether a person can be treated with GK-it dosn't matter where they are, just how many and how large.

SCLC is an aggressive disease, but that dosn't mean it is an automatic death sentence. I just received a private message from a woman named Lynn whose father had SCLC 20 years ago, and did great for 20 years!! It is just now that he may be experiencing a recurrance. And just think of the medical advances that are available NOW, as compared to 20 years ago!! If your husbands family choose not to get a second opinion, just try to know that this is ALOT to deal with. And that you tried. I would just think that they would be so sad if they ever found themselves saying "What if...we'd have gone for that second opinion" and then have to live with that on their consciences'.

Please keep us posted. Maybe if your husband read some of the posts here on this board, he'd find the strength it takes to get his dad a second opinion. Take care, Deb

Link to comment
Share on other sites

Guest sharon

so sorry that you have to go through this... but as you can see from the responses here, there are many people who are here for you. I know first hand it is very tough when people won't get a second opinion... it tends to be mostly older folks who believe somehow that one Doctor knows it all and they just don't question his answers. It is extrememly frustrating for you, I know. If you absolutely can't get your FIL to seek a second opinion, then you must, MUST, not blame yourself!!!! You can only do so much for someone and then the rest is up to them - so please, do or say what you fell you have to to get your FIL to change his mind, but in the end, it is really his decision and you can't hold yourself responsible for it!! Sincerely, Sharon

PS -They are lucky to have such a warm, caring and concerned daughter-in-law

Link to comment
Share on other sites

I wanted to thank you all for your care and concern!

I just spoke to my MIL and from what she told me, the cancer is in pretty much every major organ of his body. We have to put him in an assisted living facility as his behavior is so very erratic and he needs constant 24 hour care.

I really wish I could convince them to get a second opinion. This is something that I have placed great emphasis on since this started. But they just wont listen. I don't blame myself for it, I just feel absolutely horrible about it. Horrible that my husband has to watch this happen to his dad and he is absolutely powerless to do anything.

We could have only days, maybe weeks, but no longer than 2-3 months. And the worst part of it is that he isn't even himself. We lost him a couple of weeks ago and now we are left with somthing that isn't even him.

I appreciate your help, I just wish I could understand this better, I'm trying, places like this really help!

Link to comment
Share on other sites

By all means, I wish you luck and sucess with your FIL. I will be praying for your family as I know from experience what a wild ride this can be. My cancer was not SC, but I do live in the Pgh. area. I went to Allegheny and had just wonderful experiences with my surgeon and pulmonologist.

Perhaps you could try there for a start. Best wishes and lots of prayers as you fight the fight.

Terrie

Link to comment
Share on other sites

Spazz,

How do the know it is in "every major organ, did a CT scan show that?"

a cheif oncologist told us that before he did a scan... A CT Scan is the only way to know .. If they can do a gamma knife on the tumor it would only take one day... see if your MIL can get on this site.

Praying for you and your family

Laurie

Link to comment
Share on other sites

Spazzums -

I'm trying to understand why they haven't tried radiation to the brain lesions? It sounds like they didn't even treat the brain lesions....

The fact that it's all over his body has nothing to do with what they could do by radiation...They could reduce the pressure and at least the man could leave this earth with dignity.

Why won't they do brain radiation?

Please read Mike's story under SCLC section. He is doing good....still is...

Love and hugs,

Link to comment
Share on other sites

You guys have some wonderful and positive advice to offer! I will have to tell my MIL about this site, maybe it will help her.

As for all the questions, let's see if I can answer them:

They did radiate the lesions in the brain. Initially, there were 3 of them. 2 have disappeared, but the 3rd did not respond and shifted and now grew. They were talking about the gamma knife when his behavior became very erratic and they couldn't get him calm enough to get an MRI. Everything with his treatment has been put on hold for the past 2 weeks as they get his behavior issues worked out. He meets with his Oncologist next week to determine IF more chemo will help or not, but they don't sound to optimistic and my FIL has pretty much given up hope. But I am going to ask about continuing the radiation. I think this might be one doctor's apt that I insist my husband or I attend.

They did take him in for a CT scan and that is how they know that the cancer is everwhere. His psychiatrist told my MIL that postponing the chemo for another week won't hurt because the cancer is so far gone, she doesn't think it will make a difference.

I almost feel as if we are being given the run around with a lot of this stuff. I don't know who to believe or even if my MIL is telling us the whole truth. I wish I could find out.

And Terri, I wanted him to get his 2nd opinion from AGH because they come so highly recommended, but he insisted on sticking with UPMC because of his medical benefits. I also wanted to ask you if there are any support groups here in PGH that might be able to help us out?

Thanks to all!

Link to comment
Share on other sites

I can appreciate the medical benefit thing. My friends wanted me to go to UPMC for a second, however I was so confident in my surgeon - he and his staff are so knowledgeable and compasionate. Never once did he say "if" we do surgery, etc. It was always "when" - and then the means to the end. That place was great!

Unfortunately. when I asked in PGH and here locally I was told there were general cancer groups, but not lung cancer. My oncologist in Beaver has one like that. I was told several times here and at AGH - breast cancer support groups, but not lung cancer per se. American Cancer Society has that information, too.

Terrie

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Restore formatting

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

×
×
  • Create New...

Important Information

By using this site, you agree to our Terms of Use.