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Hi 

I am a new member just been diagnosed 8 weeks ago with small cell lung cancer. 
my name is wendy and looking for online support my cancer is also in my chest , had chemo 7 times over the 8 weeks feeling a lot better as the tumour was obstructing the superior vena cava and my face and neck enlarged l also couldn’t breath and was starting to take panic attacks , could go to bed at night as l couldn’t lay down and was panicking more, eny way ended up in the western over in Edinburgh scotland , was given a lot of steroids and put straight in chemo for 3 days , having weak days now but have been fine with chemo up untill now , l was staged at 3  had my consultant app last week said the tumour had shrunk but still didn’t ask if l have a year or what ever to live l haven’t got the confidence as yet to ask but seeing her again on the 6 th of January and am going to ask , has any one had SVC obstruction l still have pain and swelling on my face and jaw line , was also asked by the consultant if l would like radiation to my brain at the end of treatment as seemingly this type of cancer can travel to the brain xx thanks for reading and listening to me going on about everything that’s popping in my head while writing it wendy

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Hi Wendy and welcome. I'm sorry to hear about your diagnosis. You've really been through a lot in a short time. I don't know of anyone who has had SVC obstruction, but it's possible that someone here on these forums has had and will respond. I do know that some folks on her have had whole brain radiation to help prevent brain metastases in small cell cancer. If you look at the section on the forums for Small Cell Lung Cancer and the one for Radiation, you might find something there about it. 

As far as survival predictions, doctors really don't know exactly how long someone will live. You can ask the question, but just be aware that survival statistics are based on large numbers of patients and each person is a case of one. Some live much longer than expected and you'll encounter some of them here. Also, there are new treatments for lung cancer being approved all the time, so older statistics may not be relevant to treatment today.

Let us know how we can support you- that's what we're here for.

Bridget O

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Hello Wendy ~ So sorry you are enduring all of this, but glad you found this site.  As BridgetO said, you really have been through a lot in a short period of time. That's a lot to take in and deal with.  Hope you have support in this journey.  I can't offer much information regarding SCLC or SVC; I am sorry. But I hope you will find others here who can help.

I think you are thinking what we all think when we are faced with this diagnosis... How long do I have?  I know I still do every day. How I deal with it varies. I've asked my surgeon - his response was "You're cured" which I found completely overly-optimistic and a tad misleading (I was diagnosed following a lobectomy in Oct 2018; no treatment beyond surgery) as I have two more small nodules that are being watched and likely cancer, so I am hardly "cured".  Sometimes I'll search for answers regarding "how long" on the Internet and I become completely depressed by the percentages given / statistics, so I don't find that helpful but it reminds me of what I'm dealing with here.  Reading the forums here gives me hope - there are a lot of very positive, long term survivors here. Yes; I want to know their "secret" to living longer with this diagnosis, but it is going to be different for each one of us. I always try to remind myself that none of us - whether we've got a cancer dx or not - knows when our time will come. I try to remember that and approach each day with gratitude and do what I can this day. Do what is important to you. Let those you love know how much they mean to you. Yes, you should talk with your consultant - I am sure she will want to help you in navigating this. Hopefully you can access some support / social services with this as well. I don't think there are many of us that are well-prepared for this. Wishing the best for you... Colleen

 

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Wendy,

Welcome here.

I understand stage III but in a difficult treatment location: superior vena cava. First, my view about whole brain radiation (WBRT).  Generally, normally, usually, folks who receive it only have the treatment when tumors are discovered in the brain.  Small cell does have a preference for metastasis to the brain but not all small cell progresses there.  So I'd wait until a diagnostic or symptom indicates a brain metastasis before undergoing WBRT.  Speaking of radiation, has your medical team discussed the possibility of treating your superior vena cava tumor with precision radiation (Stereotactic Body Radiation Therapy or SBRT)? I'd explore that possibility at your next appointment.    

I'd also ask if the pain and swelling in your jaw line are directly related to your tumor.

Stay the course.

Tom

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Sorry to hear about your diagnosis Wendy. I was diagnosed with sclc in February. I had tumors in my lung and one brain met at that time which was about 1/4 to 1/2" in size. They said every person and every cancer case is unique, so it's impossible to predict how long a person will live. Only God knows. They told me that mine was stage IV and typically a person like that may live 2-4 months, perhaps a year depending upon treatment. I've since heard that some people lived many years after being diagnosed with sclc. I was put on a chemo regime that included an immunotherapy drug named Tecentriq. I've had infusions (through a port in my chest) of Tecentriq every three weeks. My most recent CT in December showed that the brain met has all but disappeared, but my lung tumors are beginning to grow. I'll probably include radiation into my treatment plan going forward. Sclc is a nasty foe, but one that can be fought, and that's our job as patients. Use every tool you can to fight it, beginning with knowledge. Research the heck out of this disease, using the internet and most importantly from your health care team. Ask questions. Always. Of everybody. Take charge. In short, make yourself an expert on this disease and its various treatments.  Also make note of any cancer experts nearby or available to help. There are amazing people developing new treatments, so in my opinion the future is brighter now than ever before for sclc patients.  And there are some great folks on this website who will, no doubt, be sharing their knowledge. I'm a rookie as well, but what I've learned is that knowledge and a positive attitude are key elements in this battle. Good luck as you begin the battle!

 

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Sorry for this added message but thought it to be important. It was suggested that I undergo full brain radiation in May due to my brain met. However, my brain scans  showed the met decreasing in size from my diagnosis in February. I asked lots of questions, and the final decision was not to undergo that procedure unless it was absolutely necessary. It turned out to be the correct answer for me. I'm thinking a brain scan is a serious procedure. Scans will give you solid proof that the procedure is absolutely necessary.

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