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New to small cell lung cancer extensive - please HELP

kimbee1218
Posts: 29
Joined: Jun 2010

My Dad was just diagnosed with extensive sclc. Dr. says that is doesn't look good, he has 5cm tumor and it is throughout his lymph nodes in his chest. Trying to get appt with Sloan Kettering. All of the info I find does not have much to say about small cell. Is there hope? I have worked with my Dad for 30+ years. I want to make sure that he has every chance that is available. I know time is very important with sclc. Any information or advice would be greatly appreciated. I have basically no knowledge of sclc. We have a Dr. appt tomorrow and would love to have some good questions to ask, but I am having a hard time finding some for sclc.

hope0310's picture
hope0310
Posts: 324
Joined: May 2010

Shame on the doc for saying it does not look good.

My mom was dx w/SCLC with Mets to brain on 3/1. (5cm tumor on upper rightlobe and 20 tumors in brain) She endured 12 rounds of radiation to brain. On 3/31 Mets to spine, another 12 rounds. Both of those areas responded GREAT!! She is in the midst of chemo for the lung and those treatments are going well too. (she is now dealing with some weakness that we cannot find a source of just yet, but all other good)

SCLC is agressive, but it also responds quite well. Moms doc did not throw out statistical numbers and I do not think he (or any of them) should as we are all a stastic of ONE!

If you do not like the doctors answer, by all means, get a second opinion.

My best to you and your father, there is always hope!

kimbee1218
Posts: 29
Joined: Jun 2010

Thank you for the ray of hope, I was getting real worried. The Dr that did the bronchoscopy came out when he was done and gave us the grave news, before the test results were in. He said that the PET scan showed cancer throughout his entire chest. We are going to Sloan Kettering in NYC for a second opinion. I am very glad that you Mom is doing well and hope she continues to do so. I am so glad that I found this website, it is very encouraging.

deb_needhope
Posts: 38
Joined: Jun 2010

Hi Kim, My Mom was just diagnosed too w/small cell lung cancer. It has spread to the liver and the brain. The last several weeks they've been re-checking the pathology results and did a 2nd MRI yesterday. Monday, 6/21 she is scheduling to get her Port a cath put in. We're hoping she will also get her first chemo treatment.

I just joined this network too to learn as much as possible.. My sister and I are trying to mentally prepare my Mom for her treatments and side effects but she only wants to know the day to day stuff..

We're just trying to stay focused and keep positive.. Deb.

kimbee1218
Posts: 29
Joined: Jun 2010

Thank you for your input. I am really glad that I found this site, it makes me feel like there is hope. We have a Dr appt today to go over the biopsy results, but the Dr already told us it was small ce ll and had spread to the lymph nodes. We don't know if it is anywhere else. What test did they do on your Mom to find that it had spread to the liver and brain? How long ago did they diagnose her? The waiting for appointments is terrible, seems like it takes forever. Why did they keep retesting the biopsy? They did a PET scan on my Dad, but not a MRI. Do you know why they do the MRI - maybe this is in his future testing. I hope they get started on your Moms treatment soon. I have been reading alot about the Chemo and it says that it responds well to sclc, which is a good thing. I think positive thinking is a must. Good luck...I will keep your Mom in my thoughts.

deb_needhope
Posts: 38
Joined: Jun 2010

Hi Kim, On 5/21 her primary care doctor told my Mom that her x-ray showed that something was on her right upper lung. (Had x-ray because she mentioned she was having slight pain in her back.) From there, her doctor ordered a CT Scan for the following Tuesday, 5/25. He shared the results of the CT scan the following day (Wed.) which told us that she had more than one tumor.. (We were SHOCKED!..Thank goodness she wasn't by herself!) He then made an appointment for her to see an Oncologist which we saw that Friday, 5/28.

The Oncologist ordered a bunch of tests to be done for the following week after the long weekend. Biopsy on Tue., MRI on Wed, saw a radiologist on Thur, then all results with Oncologist on Friday again. We were told she had Non-small Cell at first.

In the meantime, because of where my Mom lives (2 hours away from myself and my sister), we took her results and went to a hospital closer to us. From there we saw a new Oncologist. In the meantime the first oncologist called the new one to say they thought they made a mistake and that they thought she had small cell lung cancer. RI took the tissues and reviewed themselves and confirmed it was small cell today.

So that's where we are.. It's been crazy..

I'll keep you posted on my Mom and keep your Dad too in my thoughts and prayers.. Deb.

kimbee1218
Posts: 29
Joined: Jun 2010

Hi Deb,

This is all so sudden and crazy. Has your Moms spread to her lymph nodes? When the Dr first told us (without my Dad there), he said that it would be months and maybe treatment would buy him 6 months. This was 6/10 and since then I have been reading the posts on this site and it doesn't seem so hopeless. It is so hard because my Dad doesn't know that his time is so limited. He thinks that they will treat and he will carry on. I am so worried that we will not pick the right treatment and you only have one chance. Are they going to start your Moms treatment right away? I hope all goes well, I will be thinking of her. Definitely keep me posted.

Kim

love4life
Posts: 40
Joined: May 2010

I've been through cancer with my husband and mom both and now we are waiting to see if my dad has lung cancer. I can tell you that through my experiences so far I wouldn't hesitate to get a 2nd opinion if you feel the doctor isn't giving it his "all" for your dad. You only get one dad in life so if you have any questions about this doctor doing all he can or being knowledgable about your dad's type of cancer then get a 2nd opinion. There are many great doctors out there and you have to find one that you and your dad feel comfortable with. My mom had went to a doctor for her kidney cancer and they wanted to cut her from front to back and do an "open" surgery. I found out by doing my own research that it was most likley possible for her to have laproscopic surgery and so I asked her to go get a 2nd opinion. She already had her surgery date set but after we met with Dr. Rogers she called the 1st doctor and cancelled that surgery. She has thanked me several times for doing that research. Not all doctors have the same capabilities and in my mom's case the doctor that couldn't do the laproscopic surgery never even mentioned the possibility of it. I would choose a doctor that gives you hope. I also had an uncle that died of lung cancer while my husband was dealing with his cancer and shortly before he died he told my mom how happy he was that we moved beyond the local doctors and got the best care we could for my husband. My uncle just accepted what his local doctor told him and by the time he decided to get a 2nd opinion the cancer was too far advanced. My husband went to Mayo Clinic in Minnesota and my mom went to Henry Ford hospital here in Michigan. I would travel to the ends of the earth if I thought someone there could do more for my loved one than where I was at.

kimbee1218
Posts: 29
Joined: Jun 2010

I have appt for 2nd opinion at Sloan Kettering in NYC on 7/20. They said it would be fast when I first inquired. Then I had the patholgy report faxed to them and the appt is 5 weeks out. When I asked why I was told fast and if surgery faster, she said if he was having surgery he could get in on 6/19. She asked where he was going to be treated and I said wherever is best for him - home or there. She said Dr that does 2nd opinion and works with treatments at home couldn't see him until 7/20. I said would it be faster to get in if he were treated there and she said no, wouldn't matter. I dont think that 5 weeks is fast, especially with sclc. It seemed like something changed after they received the pathology report. Don't know if it is because they feel he wont last and it wouldnt be worth the trip. They said to ask local dr if they thought he could wait that long for treatment. If not then to do treatment here. My worry is that he will be too weak to travel if he starts treatment. Also, if they start radiation he will not be able to be gone long, because that is everyday. I just want to do the best thing for him and nobody seems to help to let you know what that may be. He is also starting to feel worse real fast. It is so hard to figure out the right thing to do. I am sorry for rambling, that is how my mind works lately. When do you find out about your Dad? I cannot imagine going through this as many times as you have. I wish you luck.

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