Recently Diagnosed, SCLC

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This topic contains 5 replies, has 5 voices, and was last updated by  certain spring 2 years, 4 months ago.

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May 10, 2012 at 4:25 pm  #10082    

sarahs

My husband was diagnosed last week with Extensive SCLC. He is 34 yrs old and a non-smoker. He had no symptoms except a cough that wouldn’t go away. It has already spread to a few local lymph nodes and he has a malignant pleural effusion. He has an 8 cm tumor in the right hilar lung and a 6cm tumor in the base of the right lung. His mother passed away from adenocarcinoma last year and she was also a non-smoker.

We are just getting started on treatment. We had Cisplatinum and Etoposide on Tuesday and Etoposide on Wed and Thursday of this week.

We want aggressive treatment. My husband is young and strong and wants to fight. We don’t know where to start. Where do we start looking for the best treatment?

May 10, 2012 at 5:00 pm  #10085    

certain spring

SarahS, I am so sorry to hear about your husband. What a shock for you both.
We have a lot of information on the site about SCLC. We also have some wonderful GRACE members who are living rewarding lives despite their disease.
When you say “where do we start looking for the best treatment?”, do you mean in terms of geographical location? Or do you need advice on choosing a hospital/oncologist?
For an introduction to SCLC, you might like to look at this briefing by Dr Gadgeel. (You’ll need to scroll down to get to the section covering extensive SCLC):
http://cancergrace.org/lung/2010/08/07/treatment-of-small-cell-lung-cancer/
This post by Dr West may also reassure you that your husband is getting the treatments that most oncologists would use:
http://cancergrace.org/lung/2008/09/05/wird-ed-sclc/#more-1452
I am sorry this disease has entered your lives, but hope we can help. All best to you and your husband.


49-year-old non-smoker, dx stage IV NSCLC May 2010 (squamous tumour of the left lung with multiple brain metastases). Radiotherapy to chest and brain; progressed through two cycles carbo/gemcitabine. Repeated lung collapses; pneumonia in collapsed lung, Nov 2010; bronchial stent placed, Dec 2010. Declined second-line Taxotere. Mutation testing Feb 2011, surprise EGFR exon deletion 19. Started Tarceva (150mg), Feb 2011. Progression in liver and elsewhere, May 2013.

May 10, 2012 at 9:22 pm  #10101    

Dr West

SarahS,

I’m very sorry to hear about your husband’s diagnosis. As you’ll see from the links above (and certain spring has provided some very good pages to get the highlights), there is a very standardized way to treat SCLC. There really isn’t a “best” or more aggressive way. Kind of like an appendectomy, there just isn’t a lot of variability in the approach, no matter where people are treated.

Good luck.

-Dr. West


Howard (Jack) West, MD
Medical Oncologist

Views expressed here represent my opinion, not those of GRACE or Swedish Cancer Institute. This information does not constitute medical advice and is intended to supplement and not replace medical information provided by your doctor.

May 11, 2012 at 2:26 am  #10113    

warriorprincess

Hi Sarah,
Sorry to hear about your husbands diagnosis. There arent many of us who have SCLC and are non/ never smokers, and also very young. The only nice thing about my diagnosis was that people kept telling me how young I was! Your husband even more so.

Its not a very nice diagnosis to get, because there are few options for treatment. Cisplatin or carboplatin with etoposide is very standard and effective. It is the standard and in my understanding, most effective first line of treatment.

If your husband responds well to the chemo, he should push for Prophylactic Cranial Irradiation (PCI), which significantly reduces the chance of brain metastases. Brain radiation sounds a bit scary, but assuming your husband is well and responds to the chemo, then I think the rewards outweigh the risks.

The challenge with SCLC is that it responds very well to chemo (I found my cough went on the first day of chemo), but tends to come back. But you should take things one step at a time and not worry about that too much just yet.

I was diagnosed 2 years ago, and am still working full time (although I work from home, so its quite flexible). I have had very few side effects from chemo. I’m currently on my fourth line of treatment.

Most of what you read about SCLC is very depressing, so its best to be careful what you read, and keep it one step at a time. I think being young and a non-smoker mean that its easier to fight, but there’s no doubt that its a nasty disease….


*************************************************************************** Diagnosed ex-SCLC at 42y.o in June 2010. never smoker. 1st line carbo/etop. PCI Nov 2010. 2nd line CAV may 2011. severe hip/leg pain sept 2011. lung and spine radiation in hosp Nov 2011. 3rd line carbo/etop Jan 2012. progression march 2012. 4th line irinotecan. progression may 2012. 5th line carbo plus taxol

May 11, 2012 at 10:51 am  #10129    

Dr. Weiss

As you’ve heard more than once, SCLC in a young never smoker is rare. It’s so rare that I tend to do something rather nonstandard (and I’m sure that some might call unnecessary) : test for treatable molecular changes, starting with EGFR. The MGH group has shown some data on mechanisms of resistance to EGFR-mutated adenocarcinoma and one of them is emergence of SCLC. My thought is based on the idea that if a SCLC clone can emerge after treatment with a TKI, why shouldn’t it be possible for one to emerge earlier on?

Your husband is young; in fact, he’s my age and I am also a never-smoker. If I were in his situation, and if I had the means, I would seek a second opinion at a major academic center. In particular, I would be looking for a clinical trial with the hope that it would be better than standard of care.


Jared Weiss, MD
Lead Medical Oncologist

Views expressed here represent my opinion, not those of GRACE or University of North Carolina. This information does not constitute medical advice and is intended to supplement and not replace medical information provided by your doctor.

May 11, 2012 at 11:19 am  #10136    

certain spring

I’m following up with Dr Weiss’s excellent guide to getting a second opinion:
http://cancergrace.org/cancer-101/2011/11/13/an-insider%E2%80%99s-guide-to-the-second-opinion/
Just to expand on his thoughts about why a second opinion might be worth having. As you probably know there are two main types of lung cancer, small cell and non-small cell (NSCLC). Recent research in NSCLC has focussed on developing drugs that can “target” particular cell mutations, of which the most common and best-known is called EGFR.
But this research has also taught us more about the incredible versatility of cancer – how it can change its nature in order to evolve and survive. We’ve actually seen examples of NSCLC changing into SCLC, as Dr Weiss mentions. And what he’s suggesting is that a thoughtful oncologist – and someone who spends a lot of time on research – might want to delve a bit deeper into your husband’s diagnosis, for example by testing to see if he has the EGFR mutation (this is done by biopsy). Such a specialist would also have a good idea of what clinical trials might be available and/or suitable for your husband.
Oh, and you’ll realise from her post that warriorprincess was one of the people I had in mind when I mentioned patients living well with SCLC! She is wise as well as resilient, and any advice from her is well worth taking. All best.


49-year-old non-smoker, dx stage IV NSCLC May 2010 (squamous tumour of the left lung with multiple brain metastases). Radiotherapy to chest and brain; progressed through two cycles carbo/gemcitabine. Repeated lung collapses; pneumonia in collapsed lung, Nov 2010; bronchial stent placed, Dec 2010. Declined second-line Taxotere. Mutation testing Feb 2011, surprise EGFR exon deletion 19. Started Tarceva (150mg), Feb 2011. Progression in liver and elsewhere, May 2013.

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