Hidden Primary SCLC - 1273734

Hi Kev,

It's unusual to not be able to see the primary lung cancer tumor on a CT, but by no means unheard of, as you can see from this comment in a post by Dr. Pennell:

"If the primary tumor is fairly obvious such as a big lung, colon, or breast mass, then most of the time we have a good idea what it is before we even get the pathology report. But it isn’t always immediately obvious where the primary site is located. Some patients come in with metastases to the brain, bone, lung, and/or liver, but with no obvious primary, and then we really rely on that biopsy to help us decide what type of cancer this is." - http://cancergrace.org/lung/2009/04/04/dx-of-primary-tumor-with-oligonu…

Chemotherapy is the treatment of choice for a small cell lung cancer which has spread to the bone, whether or not the primary tumor can be imaged, although if the bone metastasis is causing a great deal of pain or threatening a fracture of the bone, then focal radiation to that spot may also be used.

In the absence of a measurable primary, it may be difficult to judge the efficacy of chemotherapy, but if after a couple of cycles of chemo she is feeling better, and a follow-up scan shows nothing new, that will be a good indication that chemo is having its desired effect.

JimC
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Hi Kev,

It's likely it will, although treatment itself can cause fatigue. The fatigue from chemo often can be worst in the first half of the cycle, lessening after that. So if you see that pattern, and overall your wife is feeling less fatigue in the last week of the chemo cycle than she is now, that's a good sign it's working.

JimC
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The biopsy shows where the cancer originated from, which is what it did in her case. Her biopsy shows lung primary without a primary tumor in the lung showing, This doesn't mean that there aren't cancer cells there, just that they're not large enough to form a tumor. But the biopsy showed it.
You see a consultant which means you're not in the US. If this is in fact SCLC, then I would think chemo would've been started ASAP. As you've already know, it can be aggressive. Why are they doing a bronch now? Has she had a PET scan and brain MRI? I would think if this is actually SC, they'd be moving to treatment as quickly as possible since you say she's been sick for over a year. This would not follow how SC progresses. I'd want a second opinion as well, but not knowing where you are other than not in the US, don't know what else to tell you. Wishing her all the best.
Take care, Judy
P.S I am a lung cancer survivor of almost 6 years and not a medical professional. My info is from personal experience and research. My Mom passed the year before I was diagnosed. She had ext SCLC and beginning to end for her was only 6 weeks.

Hi Kev,

I'm not sure I'm clear on your meaning when you say that "the leg pain was due to small cell carcinoma not SCLC", as those two terms tend to be used interchangeably. If it wasn't clear from the biopsy, then I can understand that further diagnostic procedures such as bronchoscopy may make sense.

It is true that SCLC tends to be aggressive, and would normally grow quickly over a 14 month period. But there seems to be enough doubt about the diagnosis to be certain that's what's going on. I would certainly want to clear that up with her doctor to find out if the biopsy pretty clearly pointed to SCLC, something else, or it was inconclusive.

JimC
Forum moderator

Hi Kev,

Thanks for the clarifications. As far as the statement regarding lymphadenopathy, I would not assign any significance to the choice of words. In viewing the images from a CT, a radiologist cannot identify a cancerous lymph node other than by noting that it is swollen (and lymph nodes can swell for a variety of reasons). The statement merely indicates that there was nothing seen on the scan which would suggest cancerous lymph nodes. The radiologist's statement leaves open the possibility that there may be slightly swollen nodes seen, but that is not significant with respect to a cancer diagnosis.

I'm still not certain of the reason for the bronchoscopy, and I would ask the respiratory specialist why it is needed if there is already a definitive diagnosis of SCLC.

JimC
Forum moderator

Kev,

That makes sense, but the location of the tumor would need to be visualized in order to plan the radiation treatments, as the beams are very precisely aimed.

JimC
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