Metastatic Small Cell Carcinoma to the Pleura - 1293726

rubberduckie83
Posts:4

My mother, 71, was recently diagnosed with Metastatic Small Cell Carcinoma to the Pleura after analysis of fluid drained from a pleural effusion. She has a history of breast cancer, invasive mammary carcinoma with ductal and lobilular features in 2010. Partial mastectomy with sentinel lymph node removal, clean margins, 30ish rounds of radiation and Tamoxifen since. She has been for all her screening and wellness visits over the years, with the last being in August 2017 with a clean CT scan. Started feeling unwell in November, diagnosed with urinary infection, prescribed Cipro, has had gastrointestinal issues (constipation) and pain since, the effusion was found running x-rays and CT scan of intestines to pinpoint problem. Drained December 28th and January 5th with diagnosis on January 2nd. She has a history of smoking, which has slowed and stopped recently since she has felt unwell. Her oncologist was given the report by the hospital when the results indicated cancer, but she told my mother she was very surprised by the results and all my Mom was told was she has Stage IV small cell lung cancer and will need chemotherapy and her response will determine survival rates. A consultation for a port is scheduled for Wednesday the 10th. We are very confused, how is the cancer metastatic if no primary lesion is noted and shouldn't it be referred to as metastatic breast cancer if it has metastasized from that? The literature the doctor provided indicates a dismal prognosis and it is hard to understand how the cancer can be in this one area, yet classified Stage IV and extensive. Much of what we read online says MPEs are unusual with SCLC and Stage IV usually includes metastasis to other organs. The effusion is located on her back, right by the lower lobe. We wonder if it was missed or has grown since the August CT scan. We have a second opinion being scheduled at a large university teaching hospital, waiting for her records to be sent.

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JimC
Posts: 2753

Hi rubberduckie83,

Welcome to GRACE. I am sorry to hear of your mother's new diagnosis, and I hope that she responds well to treatment. When cancer is diagnosed, in most cases laboratory analysis makes it possible to determine the type of cells which have mutated into cancer cells, even if the primary tumor cannot be seen on images. In your mother's case, testing has revealed that the cells originally came from the lung. If this was a metastasis from the breast cancer, then the testing would have shown breast cells.

In practice, SCLC is classified into two stages: limited and extensive. Extensive SCLC has spread to other areas of the body through the bloodstream, and that is how they would have reached the pleural fluid. That is differentiated from limited SCLC, in which the spread is local to the chest, not due to cancer cells traveling through the blood.

Pleural effusions can grow quickly, so it is more likely that it was not present on the previous scan.

Keeping you and your mother in our thoughts for effective and well-tolerated treatment.

JimC
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bobpaul152
Posts: 17

Hi Rubberduckie,
I hope that you nor the staff object to me posting a response. I am not medically qualified but I am in a very similar situation as your mother. I was diagnosed without any evidence of a primary tumor on CT scan, but through some procedure that looked at the cells. I can't offer any answers and I have looked everywhere I felt might provide a lead. The issue I have is I have no idea if the cancer has gone, as there did not appear to be anything visible to start with. I do feel for you and can understand the concerns you have. After months of searching I felt I wasted a lot of energy, perhaps it is better to focus on feeling well? It does seem a strange situation and maybe rare, but I would like to let you know that you are not alone.

Bob P.

rubberduckie83
Posts: 4

Thank you both for your replies. She had yet more gastro pain today so I called 3 of her doctors to get some attention. Another x-ray and CT scan today confirmed no involvement other than the moderate effusion, gastro pain is assumed to be referred. A PET scan is set for next week for follow up. The effusion is filling again from the drainage on the 5th, but the doctor said that will hopefully respond to the chemo which we hope to start ASAP.

bobpaul152
Posts: 17

Hi Rubberduckie,
I hope it all goes well over the next week or so. Keep us informed of the progress. I would be interested to know if a primary tumor is found as I have been looking at information in this area for a while and it seems most experts would find it incredulous that there would be no primary tumor yet my doctor seemed to think it was not out of the ordinary?

Jim, would a plural effusion be classed as a primary?

Good thoughts for you and your mother,

Bob P.

catdander
Posts:

Hi Bob,

The primary tumor would be a mass found in the lung. There are rare occasions when there is no primary but that is far from the norm.

Janine

rubberduckie83
Posts: 4

Hello,

Thought I would provide an update. Yesterday my mother had a PET Scan and today we met with her new oncologist who specializes in SCLC. It turns out the PET picked up a mass in her pleura, however there is no other cancer. This mass and the malignant cells in her pleural fluid are the only cancer that has been found. While it still is Stage IV, and classified extensive, it isn't truly metastatic as all the cancer is contained in her pleura and the resulting effusion. Going forward she will be doing chemo and is being screened for placement in a clinical trial with a possible chemo/immunotherapy first line treatment. She is having a PleurX catheter placed as well, since the fluid has had to be drained a total of four times.

catdander
Posts:

Hi rubberduckie,

I'm glad your mom is making headway into treatment.
Hopefully the PE will recede with treatment. I imagine this has been looked at but make sure the trial will still be available after she begins chemo. Trials have their own set of rules such as no previous treatment aka treatment naive. Another fyi, sometimes oncologists like to wait and see if chemo helps with the effusions before placing a pleurx cath. But with a mass in the pleura there could be some urgency. This might be a question for the onc.

The likely reason they are calling this stage IV is that malignant pleural fluid usually comes from a primary that metastasizes into the lymph or blood system suggesting cancer cells in the lymph or blood systems.

I hope your mom is feeling better soon.
All best,
Janine

rubberduckie83
Posts: 4

Thank you Janine!

The chemo and immunotherapy together is the trial. She will get the standard chemotherapy, plus a placebo or one immunotherapy drug or two immunotherapy drugs in the same day. We were cautious about starting chemo elsewhere so we could take part in the study if she qualified. They do anticipate the effusion shrinking with chemo, but as she has needed draining on a weekly basis they are concerned, even though chemo should begin within the week. Honestly, I think she pushed getting checked on this last drainage because she so badly wanted her care to be transferred from the facilities we were going to previously. They still need to do a baseline brain MRI, blood work and finish signing paperwork.
Thank you for your input. The information I've found on here has been helpful and I'm glad I have a place to share and get feedback.