Extrapulmonary small cell cancer - Lung Cancer Support

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Extrapulmonary small cell cancer

Mitski profile image

Hi everyone,

My wife was recently diagnosed with extrapulmonary small cell cancer which presented in the breast. After having PET scan and brain MRI the cancer was thankfully no where else in her body. This type of cancer is very rare and the treatment is typically the same as for small cell lung cancer (SCLC). She is currently receiving 4 cycles of chemotherapy (carboplatin and etoposide) - she is in the 3rd cycle at present. She is also receiving targeted radiation therapy (she has almost completed her scheduled 25 sessions). From what one reads, the general prognosis is poor with small cell cancer, and depending on how the tumour responds to treatment, we are left with very little else in terms of secondary treatment. We received the tumour sequencing results and there are no targetable genes for immunotherapy. I am just wondering if anyone else has been in the same/similar situation, and what possible treatments there are that could be available to her? Physically, she has handled the treatment like a warrior, she is a bit fatigued but generally fine physically. We have a 12 year old son, and it is this that takes the most toll on my wife. The mental struggle knowing that she might not be here to see all his landmark moments (going to secondary school, graduating from College, getting married etc,) is extremely difficult. If anyone can suggest any way of how to ease this struggle, it would be greatly appreciated. It is hard to have any hope when faced with limited options, so any good news stories would also be appreciated.

Stay strong everyone

9 Replies

I don't know if this would be of interest to you -- a Zoom program on small cell LCa. Here is the registration link (copy & paste into your browser)

nccn.org/patientresources/p...

Mitski profile image
Mitski in reply to Lyubov

Many thanks for the link, that is very much appreciated.

Mitski, I am sorry to hear about your wife’s diagnosis. My husband has small cell, Extensive. He has been treated with Carbo/Etoposide, then Topotecan. Now he is doing radiation to left lung and stomach. Reading anything on the internet about Small Cell is disheartening to say the least.

Mitski profile image
Mitski in reply to DahliaBloom

Dahlia, I am sorry to hear that your husband has extensive sclc, and I hope he is doing well with his treatment.

Denzie profile image
DenzieModerator

You mention that this is limited to the breast, are they calling it sclc-limited then? My coworker’s husband was diagnosed with sclc. He lived 7 years with it before a heart attack took him.

This link will take you to some helpful articles about SCLC. go2foundation.org/?s=Small+...

Mitski profile image
Mitski in reply to Denzie

Hi Denzie, the oncologist described it as localised (which I presume is similar/same as limited). This is the bit of hope I cling on to, as I hope it hasn't since spread to other parts of the body, as her Ki-67 index was very high. The tumour appears to be responding to treatment, which was expected, and if it shrinks enough then surgery might be an option. Just worried, because of the high Ki-67 index, that the cancer will come back very quickly. Sorry to hear about your co-worker's husband. Did he undergo any treatment?

Denzie profile image
DenzieModerator in reply to Mitski

First, my apologies, you did post that it was extensive. Yes, he had Cisplatin and etopicide and preventative cranial irradiation (PCI). That was done prior to 2008.

Please get a second opinion. Immunotherapy is now being used in sclc and I don’t see that she has been offered any. nccn.org/home/member-instit...

PS: I promise not to answer these at 2 am again.

Hi, I'm sorry to hear about your wife's cancer. Maintaining hope is is so important. The what ifs are normal but not a place to build your house; meaning that she is a lot more than her cancer. I would suggest contacting the Go2lungfoundation for their expertise and more support. I send you my thoughts and prayers.By the way, I am a stage four nsclc survivor and am doing well. I was diagnosed 18 months ago. My prayers are sent your way. Keep the faith. Best of luck to you both.

Mitski profile image
Mitski in reply to etpd2226

Many thanks for your kind words and great to hear that you are doing well after being diagnosed with stage 4 cancer, and I truly hope you have continued positive outcomes. I'll forever be hopeful.

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