My mom, turns 52 today and is receiving 1st chemo today. She lives in AZ and was just visting the family in MD few weeks ago. Upon returning home she felt body aches..thought perhaps from my 2 yr old son jumping on her or perhaps lyme diease. She got dramatically worse in few days and doc said it was arthritse. She went week half later to emergency room due to body pain where they thought valley fever but scans and a liver biopsy showed single cell lung cancer extensive, in her lungs, liver, bones, hip, femer but not in brain. She has been on morphine and can not talk function, etc. Her sodium is very low. I'm concerned that yes although she has smoked 30 years and her mother at age 65 had lung cancer that perhaps its not sclc and something else. I know that im in denial and greiving but I can't believe it. Since Friday when I heard the news I've not stopped researching... she has not shown any prior symptoms, she never coughs, nothing always healthly except One in a half years ago she had surgury on her pancreas. She has been in severe stomach pain since, always going back to doc to say something just isn't right and he would say scare tissue and still healing. I don't get why this happened so sudden and no prior symptoms at all. I've read numerous messages blogs from others and I've not came across not one where it was diagonised just by body pain. So my question is how often if any is sclc misdiagonised and is it typical that there are no prior common systems? She is getting treated today and I know time is not on our side. I simply feel so helpless and to sit knowing the expected outcome is unbearable. Thank you in advance for your time. I'm just reaching for another answer another outcome.
how often is sclc extensive misdiagonised - 1245197
amy16
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Reply # - July 16, 2012, 08:21 AM
Reply To: how often is sclc extensive misdiagonised
Welcome to Grace. I'm so sorry you mom and family are in this horrible situation. It's true that most lung cancers are found late in the game, late stage, because of the lack of symptoms. It's one of the biggest problems with treating it. Perhaps I'm not reading this right but it seemed you said there was only bone pain for the diagnosis. Do you mean to say bone pain was the only symptom, if so yes that is very common. For the diagnosis your mom had a biopsy, yes? That's where cells are taken from her tumor and looked at under the microscope and is the diagnosis all oncologist need to begin treatment.
I don't think anyone can say how well the treatment will work, how well you mom will feel, or how long your mom will live. So hope for the best and plan for the worse is a philosophy many take around here. This isn't a group that anyone wants to join but this website is very informative and can be trusted for its content.
Below is a couple of links that may be helpful.
I think things will begin to calm down once your mom is on treatment and you understanding grows.
Janine
http://cancergrace.org/lung/2010/08/03/intro-to-sclcref-lib/ says," In 2010, the American Cancer Society has estimated that approximately 222,000 new cases of lung cancer will be diagnosed, of which 35,000 will have SCLC. "
http://cancergrace.org/lung/2010/08/07/treatment-of-small-cell-lung-can…
Reply # - July 16, 2012, 09:09 AM
Reply To: how often is sclc extensive misdiagonised
Thank you for responding. I meant that her only symptom prior to being diagonised was bone pain. Yes a biopsy was done last Monday on her liver. This past Friday the results were given and she was diag. with single cell lung cancer, extensive stage. She will get chemo today, Tuesday and Wednesday then in 3 weeks will repeat this schedule for 18 weeks / 6 treatment sessions total. The doctor gave us Stats that reflect a 50 percent chance for 6 months and 5% for Two years. So I appreciate the comments and I am trying very hard to be hopefull. Again thank you for responding. We are getting a second and third review.
Reply # - July 16, 2012, 06:36 PM
Reply To: how often is sclc extensive misdiagonised
I'm afraid that the diagnosis of small cell lung cancer (I'm pretty sure that's the diagnosis you're referring to, not single cell lung cancer) is often pretty straightforward, and her symptoms sound very much in keeping with it.
The treatment is generally quite well established...most typically a combination of a platinum agent (cisplatin or carboplatin) and etoposide, as illustrated in the summary pieces that Janine provided links for. I would say that the evidence supports a 6 month survival a little better than 50%, but unfortunately I think that the 5% survival at 5 years is inaccurately high, though that's probably hard to imagine.
The good news is that small cell lung cancer can often respond very nicely to initial treatment and lead to a significant improvement in symptoms, activity level, and quality of life. The challenge is that these benefits are typically quite transient, and the cancer is notoriously less responsive when it progresses again.
Good luck.
-Dr. West
Reply # - July 16, 2012, 07:27 PM
Reply To: how often is sclc extensive misdiagonised
i think one of the challenges of the disease is the speed with which is takes hold. I went from no symptoms to sounding like Darth vader, and not being able to breathe lying down within about a fortnight... it was very scary.
For me, the good thing was it reversed even more quickly than that when chemo started. By the end of the first round of chemo, I had no symptoms, and I had no further major symptoms for around 18 months, when I started to get bone pain.
I've just passed the 2 year mark... so I'm definitely one of the statistical "outlyers", but I was also an outlyer going into the disease as well - having never smoked, and never been exposed to passive smoking to any degree.
Its certainly a challenging journey, but dont give up hope just yet. Wait and see how she responds to treatment - I hope she has a response like mine!
Reply # - July 16, 2012, 08:28 PM
Reply To: how often is sclc extensive misdiagonised
Thank you for sharing and responding. It is very encouraging to hear positive feedback. Take care
Reply # - July 16, 2012, 08:41 PM
Reply To: how often is sclc extensive misdiagonised
Yes I meant small cell and not single..... mind is a mess to say the least. Also, rate I indicated was not 5years but 2. To me I don't want to focus on the average survival rates because my mom is one in a million and we are going to fight with everything. Thank you for responding. I was just reaching and hoping perhaps it could be something else but its clear.
Reply # - July 18, 2012, 06:35 PM
Reply To: how often is sclc extensive misdiagonised
Amy,
Sorry to read of your mom's condition.
My mom had ex-sclc and she was misdiagnosed. After suffering what she thought was a sinus infection she went to a local urgent care office (seen by a LPN-C) who diagnosed her with strep throat. Thankfully she had an appointment with her regular doctor about a week later and that is when the sclc was discovered. Within two weeks she was in the hospital getting chemo and on very high levels of oxygen. As Dr. West said, the chemo generally works very well with sclc. Though doctors thought mom would not survive, she was released from the hospital in less than a week and lived another seven months (passed: 2/12/12). Though there was no cure for her she did get to see a new grandchild and spend extra time with the family. Even though she had troubles with "chemo brain" I still would not have traded that last few months for anything. Dr. West says "the evidence supports a 6 month survival" but keep in mind that every patient is an individual. My mother survived 8 months after diagnosis and there are folks on this board who have survived one or more years. My advice is to treasure every moment regardless of the amount of time.
Jeff.
Reply # - July 18, 2012, 07:34 PM
Reply To: how often is sclc extensive misdiagonised
Well, what I actually said was that the evidence supports a six-month survival better than 50%, which is the stat her oncologist had relayed. I agree also that there is a good deal of individual variability. The statistics do a fine job of telling how a population of people do but don't do a good job of predicting how an individual person will do. Some do far better, and some do worse, than the averages.
-Dr. West
Reply # - July 24, 2012, 04:47 AM
Reply To: how often is sclc extensive misdiagonised
Dr. West,
Sorry if I misunderstood what you were saying. You, and the other doctors here on GRACE, do such a wonderful job helping people better understand what they (or their loved ones) are facing.
Jeff.