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JoshK

SCLC - Terrified please help

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I've had a tough few months.

My father died 2 months ago of long-term Parkinson's Disease. In the midst of her grief, my mother, who was the picture of health, collapsed and had a seizure. She had a small-ish tumor (<3cm) removed from her brain. She bounced back from that like a pro and was walking 2 days after. She is due to have gamma knife just to remove any residual malignancy. However, we found that the tumor had metastasized from her lung. To make matters worse, though the doctors originally thought it was Adenocarcinoma (lots of new treatments for that), it turned out to be SCLC. 

I'm totally distraught - the prognosis is so grim for this. I'm looking for some good news - any good news. The only thing I have to say is she is in excellent overall health and spirits, and the doctors were all amazed by her performance status. In addition, though by definition her disease is extensive stage, it's actually quite limited - a small tumor (2 cm) in her lung and the small-ish one in her brain, which was already resected. No other evidence of tumors.

So, what I'm wondering is...we do hear these stories of people living 5, 6, 7, 8 years with this disease. Is the fact that she had such a limited spread actually good news, or am I kidding myself? Essentially, I know that the 2-year survival rate is like 5%, but I also know that by the time it's discovered most people have multiple tumors and metastatic sites. The doctors all said it was quite unusual to have just one small primary tumor with one small metastasis. 

Should I take it that her chances are better than average? For the people here who are long-term survivors or the stories you know of long-term survivors, did they also have a very limited spread?

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Hi Josh, You've really been through a lot!  It's understandable that you're terrified. I don't know much about SCLC. It's good news with any cancer that the person is in excellent health and spirits and that actual spread is limited. I hope that others on this forum who are better informed than I about SCLC can give you some more meaningul answers. Hang in there and stay with us. This forum can be a good source of hope and support as well as information.

Bridget O

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Welcome Josh,

Wow, your mom has been through the ringer. 

Rather than talk about survival statistics, let’s focus on curative treatment. By curative, I’m talking about Intensity Modulated Radiation Therapy (IMRT), Image Guided Radiation Therapy (IGRT), or Stereotactic Body Radiation Therapy (SBRT), or surgery or a combination of both.

The tumor in the brain is fried, and the one I the lung can be fried or removed. Her chances are way better than average. New modern radiation is a marvel and radio oncologists are getting very aggressive about attacking multiple tumors. 

Go to our forum blog tab and read Mary M.’s blog on treating stage IV disease with modern radiation. The type of cancer doesn’t matter if it can be fried!

Stay the course,

Tom

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Wow that is encouraging but are you sure it's relevant to SCLC? Basically what the doctors said is this cancer is so aggressive that little bits of it hang out everywhere and just pop up all over the place so generally surgery isn't an option and targeted radiation is just used to contain it locally. Have you heard of this used on SCLC?

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Josh,

It can have little bits popping up all over but I've known several on this site who've received curative treatment for SCLC extended stage using these techniques.  One even got it at the VA. So, if a PET scan clears her tumors to the one remaining in the lung, you bet yah!  Radiosurgery or conventional surgery can be curative.

Get her stage tested with a PET scan and engage with a surgeon or radio oncologist.

Stay the course.

Tom

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Mom had a PET scan today, and we're praying that it shows no other signs of disease apart from the primary tumor. She's doing Gamma knife tomorrow to remove any residual cancer from the tumor that was resected. The doctors decided to hold off on WBRT given that it's not needed yet and that there are potentially serious cognitive side-effects.

We're getting a second opinion next week from a terrific expert in this cancer at Memorial Sloan Kettering. 

The prognosis is so grim, but we're doing all we can. I know there are some things finally being developed for this cancer, (e.g. https://www.mskcc.org/blog/scientists-home-treatment-advance-chemotherapy-resistant-small-cell-lung), so we're just praying that she can hold on.

It's just a very strange place to be. She looks great and feels great, but she has about the worst cancer you can have inside of her...5% 2-year survival rate. Chemo starts in 10 days or so, and then I think this will become very real.

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Remember, those survival statistics are based on people diagnosed 5 years ago.  As you noted, new treatments are being developed all the time--no reason not to believe your mom will be one of those who makes it, right?

Will keep you guys in my thoughts--keep us posted, k?

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Thanks so much LexieCat.

We'll get the very best in terms of new treatments given that we're seeing the guy who's basically writing the book on this type of cancer, but from my understanding there really haven't been any breakthroughs (standards of treatment are the same as in 1990), and the new and exciting stuff is all experimental at this point.

I'm just trying to concurrently savor every day and moment of my Mom's good health while learning as much as I can both to be her best advocate and also to be prepared for whatever comes.

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Ok, so we got the PET scan. No other metastases. It's a small 2x1cm tumor on the periphery of her right central lobe with 2 nearby lymph nodes and 1 lymph node on her other lung which look questionable (not confirmed as cancerous). Yesterday they did a targeted gamma knife procedure on her brain which required an MRI, and that showed no brain abnormalities. Bones, liver, kidneys, etc. are clean, and no pleural effusion in the lungs. She'll start chemo in a week. The doctor also mentioned she would be a good candidate for thoracic radiation depending on how she does in chemo.

The doctor was very guarded with me. She said my Mom's relatively limited spread and very strong performance status and overall health were "good prognostic factors." However, when I asked if that resembles the patients she has who have survived long-term with this, she said it's kind of random. When I asked if she would look at my Mom with the usual prognosis (median survival of 1 year or less after diagnosis) she just said "hope for the best but be prepared for the worst." So, I really don't have a good feel for this. I know the doctors  have to be very neutral about these sorts of things, but it didn't leave me feeling any better.

 Anyone know of any cases like this? Any good stories? What are your thoughts?

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Josh,

From your post, I deduce your mom is seeing a medical oncologist.  She needs to consult with a radiation oncologist, and the radiation oncologist should give an opinion on frying all reported tumors, including perhaps the questionable one, with modern radiation technology.  These would include INTENSITY-MODULATED RADIATION THERAPY (IMRT), IMAGE-GUIDED RADIATION THERAPY (IGRT), or STEREOTACTIC BODY RADIATION THERAPY (SBRT).  Read about these methods here. Select the > What are the different types of external beam radiation therapies (EBRTs).  These methods generate surgery-like results.  Again, I deduce "a good candidate for thoracic radiation" as meaning Standard External Beam Radiation Therapy and that is an area treatment as opposed to a laser-like treatment.

She could have both chemo and the aforementioned modern radiation treatments, so I wouldn't delay the chemo.  But, do press for a radiation oncologist consultation.

Stay the course.

Tom

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Hi Tom,

She is seeing a team of doctors, including a medical and radiation oncologist. They work closely together. The radiation oncologist is terrific, so I'll call him directly and discuss this.

Can they do these in tandem? The medical oncologist suggested the radiation would be after the chemo or near the end of the course.

Thanks a lot.

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Josh,

I'm not a doctor.  I had my conventional radiation and chemotherapy in tandem (together).  But my CyberKnife, a form of SBRT, was performed without chemotherapy.  Best to rely on the doctor's call.  I would hope the medical team has considered these modern radiation techniques but perhaps they've overlooked them.

Calling and asking directly is a good approach, but get a specific answer as to why she cannot have these modern technologies.

Stay the course.

Tom

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So I spoke to the radiologist. I'll have another talk with him as we move along, but here is what he said  (hopefully I'm characterizing it correctly):

He's eager to be as aggressive as possible given the relatively limited spread of my Mom's disease plus her overall very strong physical condition. In addition, the tumor is peripheral so there's much less risk of any collateral damage. However, the decision about what kind and if to pursue radiation will depend on my Mom's response to chemo. If the chemo is effective at shrinking the tumor and those lymph nodes, then radiation has shown in can get the body to an NED state and really delaying the recurrence. However, if the chemo is not very effective, at that point radiation is more palliative, helping to de-bulk the tumors as they grow. I believe he added that in a situation where you have cancerous lymph nodes that were not responsive to chemo, radiation is attractive because it can quickly deal with those sites but in the long run didn't improve patient outcomes because the chemo didn't eliminate the little cancer cells hanging out elsewhere around the body. On the other hand, if the chemo is effective, then destroying that tumor with radiation will really slow the disease because the little cancer cells hanging around are still there but very much diminished, and then getting completely rid of the tumor can get you to an NED state for some period of time.

Makes sense? Thoughts?

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Josh,

Yes, the explanation makes sense to some degree.  True, cancer cells in the lymphatic system are not interrupted by precision radiation thus allowing a future recurrence.  But, the tumor killing power of radiation is undenied.  I'd have both forms of treatment concurrently.

Stay the course.

Tom

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Great, thanks so much Tom. He did seem eager to do radiation on the tumor, but he will re-visit after one round of chemo to see how my Mom is doing.

You're the best!

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