sclc

[Izzycat]

Hello, I have been visiting this site for a couple of weeks now and I am so happy to have found you. I am sorry it has taken me this long to intoduce myself.

My husband (29) was diagnosed with SMLC in July. He has refused all treatment and will not talk willingly about the cancer. He met with an onc in September but has not been back to the doctor in the last three months.

I am struguling to understand why.

He has so far only had symptoms of extream tiredness, headaches and stiffness so it feels unreal and yet I am waiting for something horrible to hit. I know the pain he is experiencing is getting worse. Much worse.

I have no way to know how quickly this is going to progress. I am so scared. We have small children and he has no patience with them any longer. His moods are very unpredictable.

He is so young, a non-smoker and this was very unexpected as I'm sure it is for everyone. I'm so unsure how to deal with this.

Thank you for listening

Barbra

[Bev'sSister]

Hi and welcome to this site.

29 years old is very young to have this. I am sure your husband is scared beyond his years. Small cell lung cancer does progress pretty fast without treatment. Forgive me for being blunt, but he absolutely has no chance without treatment. Where are his parents in this? Also, I thought only smokers got the small cell. Has he ever smoked?

I really haven't got a clue as to what you can do if he is refusing to get treatment.

Someone should come along soon and answer that question. There is a lot of knowledge and experience on this board.

Keep us informed,

Bobby

[nancyf267]

I have been told by several doctors that you only get SCLC from smoking. I was 38 when diagnosed, went through radiation, chemo, then PCI...less than a year later another biopsy was taken and I was told SCLC was back and they sent me to a doctor in a bigger city to talk about 2nd line chemo and trials...long story short, he order his own biopsy and it was determined to be Carcinoid Tumor - which does not respond to chemo or rad.

GET A SECOND PATHOLOGIST TO LOOK AT THE SLIDES! 29 and a non smoker doesn't make any sense...I was told that these cancers are in the same "tibe" but a different "family" and are "notoriously" hard to read. I was so very lucky in my situation....and have found several others that have the same story to tell.....I wish I would have pushed the doctor more each time he said "you are so young...my youngest patient ever with SCLC...I just can't believe it."

[Connie B]

I'm sorry you've had the need to find us. Your husband is pretty young to be giving up without a fight not having very much inforamtion regarding lung cancer, and that there are MANY of US who DO SURVIVE IT! I agree you might want to make sure he does have Small Cell rather then Non Small Cell. Small Cell is connected to smoking, but I'm sure it can happen to non-smokers as well. It's just the % might be very very very slim. But we never say never.

You both can learn a LOT from this board. And you will get a lot of very good imforation and eductaion and support from all that post on this board.

Good luck. Hope he will consider changing his mind!

Lung Cancer is NOT ALWAYS a death sentence. (depending on who you talk to!)

[nyka69]

Barbra,

I agree with the consensus - get a 2nd opinion.

My husband also refused treatment for three months. He did not want to know what type of cancer he had, he did not want to know his prognosis. He did not feel sick at all. He had a hoarse voice that lasted too long and long story short, discovered he had a 10cm mass in his lung.

Because he was feeling well, he did not want chemo or radiation to "make him sick." He remembered seeing others go through chemo many years ago, before side-effects were as well managed, and didn't want to feel that way.

SCLC (if that's what this is) progresses quickly. I would try to find out what his fear is. Is he afraid he'll "get sick" from treatment? Is he afraid he'll lose his hair? Is he feeling depressed? If you can find out what his concerns are, there may be ways to allay those fears.

I knew my husband's prognosis. I was terrified that he wasn't open to treatment. But I had to respect his wishes. Over time, I finally convinced him to at least TALK to an oncologist. Just talk. Hear what he has to say, then decide. Thankfully, the first question the onc asked was "what is your goal? what are your concerns?" They discussed hubby's fear of feeling sick, and the doctor worked really hard to manage side effects. Thankfully my husband had very few side effects and he was able to keep his regular routine.

Anyway, I'm rambling.

Be gentle with him. Time your conversations carefully. If he becomes closed or withdraws, wait for another opportunity to talk. But ultimately, it is his decision to make. I just hope that it will be an informed decision.

I'm sorry you are going through this, especially so young and with small children. We are here for you anytime you need to reach out.

Peace.

[JB]

Barbara welcome to the "did anyone get the number of the truck that just ran us over"club. It sucks that you have to be here, but there is a lot of good advice from many people who have been through this.

There are many people here to help. Your situtaion is similar to ours, as well as many others here, so you should be able to find support from people who have been through the emotional ride you are on.

At 29 I would hope that your husband realizes everything that he has ahead of him, and will decide to fight this with everything he has. It is certainly something that I would not want to wait very long, however, I'm certain he needs some time to get his head around the DX.

Fortunately Colleen and I have always been on the same page on her treatments. Read her profile below the post. Brain surgery to remove a huge tumor, 6 rounds of Chemo, and now Tarceva. Tarceva is a bit of a "breeze" compared to all the stuff before it, so we're hoping it continues to work it's magic for a long time before we have to look for other options. If you ask her, she'll tell you it sucked, and she felt like mud, but she'll also say she'd do it all again to be where she is today.

I wish you, your husband and family all the best.

[Patkid]

I am glad you posted to introduce yourself.

I will hold your family in faithful prayer.

I am sure you and your husband feel as though you have been sucker punched.

I am so sorry and hope your husband seeks a second opinion.

Best,

P

[Don M]

Hi Barbara; I hate it especially when young families have t deal with this lc c**p. I hope your husband sees an oncologist for a second opinion. The first oncologist may have not been very positive. Here is a link where you can choose a major comprehensive cancer center by state;

http://cancercenters.cancer.gov/cancer_ ... names.html

Don M

[fillise]

I hope you can convicne your husband to at least talk to an oncologist about possible treatment options. It can be treated and he doesn't have to give up. They can manage the side effects wonderfully. If you will do a search for chemo I think you will find that many of us or our loved ones found that the chemo was not nearly as bad as we feared.

If nothing else, we can be a place where you can vent or cry or just say all the things you won't feel like you can say to him.

Susan

[Muriel]

Welcome, Barbra. Glad you found us. I think this group can offer a lot of support for you and many, many suggestions. I'm with the other people who have suggested a second opinion. It never hurts. Are you near a cancer center? Best wishes for success in getting your hubby to allow treatment.

Muriel