What do I do next

This topic contains 31 replies, has 4 voices, and was last updated by  aaron 1 week, 5 days ago.

Viewing 12 posts - 21 through 32 (of 32 total)
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January 14, 2016 at 10:25 am  #1272586    

aaron

Hi Jim, thanks for responding and I get your point. I think you can guess that I am clutching at straws. I just wondered if there would be an outside chance of triggering a eureka moment in someone. I would say I’ll leave it to the doctors to fathom out, but they are scratching their heads as much as me but probably not as worried about LC as they can take a more objective view on potential causes and their likelihoods. Take Care, Aaron.

July 3, 2018 at 7:38 am  #1294785    

aaron

Hi Grace,

Well it is over two years since I last posted and I hoped that I would not have to post again. I have just been diagnosed with SLC and I am guessing it is extensive as there are liver metastasis.
It just shows you how devious this cancer is. I am still in shock but not surprised as the last few years have been a struggle.
I just wanted to post here in case it helps anyone in the future.

As always, best wishes,

Aaron

July 3, 2018 at 8:50 am  #1294787    
catdander forum moderator
catdander forum moderator

Aaron,

I hate hate hate to hear this. I’m so sorry. I hope you have the support you need and let us know if we can help in any way. Do you have a plan of action such as chemo or a trip somewhere?

All the best of luck,
Janine

July 3, 2018 at 9:10 am  #1294788    

onthemark

Hi Aaron,

I’m so sorry to read that you ended up with a diagnosis of SCLC after having enduring suspicions for a long time. As you probably know by now, there are some clinical trials and new results combining immunotherapies with traditional chemo, among other avenues.

Here is one recent (July 2018) popular article that summarizes new developments in the treatment of SCLC:

Expert Provides Insight on Shifting SCLC Treatment Landscape

https://www.targetedonc.com/news/expert-provides-insight-on-shifting-sclc-treatment-landscape


10/2015 Chest xray found a nodule as part of a physical (no symptoms).
01/2016 Upper left lobe lingula preserving lobectomy stage 2b for 1.9 cm invasive adenocarcinoma with additional 2 mm AIS nodule found in pathology.
03-05/2016 Sixteen weeks of adjuvant cisplatin/vinorelbine.
07/2016 Durvalumab adjuvant clinical trial discontinued after 1st dose knocked out thyroid.
12/2016 Revised to stage 1b (due to VPI) after new guidelines for multifocal lepidic lung cancer.
07/2019 Next scan.

July 4, 2018 at 12:55 pm  #1294792    

aaron

Hi,
Thanks for the information onthemark, I am in the UK so trials are quite limited, the only ones I can find are for people where the chemo isn’t working.
Janine, I should be starting a standard chemo treatment, I think he said cisplatin and something else. I don’t feel fit enough to travel and funds are running low. I lost my job a while back as I was struggling to complete my work. My employer would have been sympathetic if they had known I had cancer, this disease does stink. I question myself about if I made things more difficult by telling the doctors that I thought I was experiencing symptoms due to sclc. They kept telling me that it was extremely unlikely and the symptoms were not typical. It was the liver that gave the game away in the end. I was having to pay for investigations to be carried out, as our National Health Service doctors said there was nothing wrong with me. Our NHS is a great asset but, as I found, doesn’t really give the patient much choice or say. The private docs were the only ones happy to act on the test results. When I got diagnosed my doctors told me that cancer was very unpredictable, so my question was just how could they tell me so confidently that I never had cancer when all the while I was experiencing these symptoms? Looking through the various forums, I am not the first to be diagnosed late, but I wish and hope that I am the last.
If any questions come up in the next few months I will ask for advice. Thanks for listening and providing this valuable forum.
Best wishes,
Aaron

July 5, 2018 at 8:13 am  #1294803    
JimC Forum Moderator
JimC Forum Moderator

Hi Aaron,

I too am very sorry to hear of your diagnosis, and I’m sorry that you had such a long period of symptoms before it was discovered.

Cisplatin is generally used in first-line therapy for SCLC, often in combination with etoposide or other agents. As onthemark stated, immunotherapy may be an option for you at some point, and the GRACE faculty discussed this subject in this podcast: http://cancergrace.org/lung/2017/08/30/asco-2017-lung-cancer-what-is-the-role-for-immunotherapy-in-relapsed-small-cell-lung-cancer-after-asco-2017/

I hope your treatment goes well and you get a terrific response.

JimC
Forum moderator


Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19
4 cycles Carbo/alimta, 65% shrinkage
Tarceva maintenance
Mar 2010 progression, added Alimta, stable
Sep 2010 multiple brain mets, WBR
Oct 2010 large pericardial effusion, tamponade
Jan 2011 progression, start abraxane
Jun 2011-New liver, brain mets, add Tarceva
Oct 2011-Dx Leptomeningeal carcinomatosis; pulsed Tarceva
At rest Nov 4 2011
Since then: http://cancergrace.org/blog/jim-and-lisa

July 5, 2018 at 3:57 pm  #1294815    

onthemark

Hi Aaron,

Like Jim, I also hope you get a great response to treatment.

We also have publicly funded medical care where I live, but no option to access private doctors. Sadly, I am not surprised by what you wrote and the struggle you have been through to get a diagnosis. When one has alarming symptoms and test results it is natural to want to get a diagnosis and move on to treatment. Doctors can have a hard time making diagnoses when the presentation is not typical, and things often look different in retrospect.


10/2015 Chest xray found a nodule as part of a physical (no symptoms).
01/2016 Upper left lobe lingula preserving lobectomy stage 2b for 1.9 cm invasive adenocarcinoma with additional 2 mm AIS nodule found in pathology.
03-05/2016 Sixteen weeks of adjuvant cisplatin/vinorelbine.
07/2016 Durvalumab adjuvant clinical trial discontinued after 1st dose knocked out thyroid.
12/2016 Revised to stage 1b (due to VPI) after new guidelines for multifocal lepidic lung cancer.
07/2019 Next scan.

July 6, 2018 at 2:54 am  #1294821    

aaron

Hi Jim and Onthemark,
Thank you for your good wishes, I do expect to go down the cisplatin route, but there are question marks over my liver tests have been high and also some of the blood counts have been low. I will wait and see what they say.
Onthemark, I do think the majority of my symptoms were typical, especially weight loss, fatigue, sweats along with some others and questionable blood tests. When coupled with a positive test on the early CDT lung blood test I am not sure what more we could have added to raise suspicions. I am not the cleverest guy around, but I posted here 32 months ago or so suggesting I thought I had sclc and that was after a period of dismissal from my doctor. The only thing that looks to be non typical is the time frame. I am upset that I was left until I had liver metastasis.
I am trying to look at immunotherapy treatments but maybe this is too early yet.
Good luck to you with your treatment.
Aaron

July 6, 2018 at 3:02 pm  #1294826    

onthemark

Thanks Aaron,

I have a long wait to get the results from my latest ct scan… two weeks.

If nodules or masses do not show up on scans doctors may become dismissive of symptoms and test results that otherwise point to sclc especially if they go on for a long time without anything appearing on scans. Did anything show up on scans? My cancer was only caught because it appeared on an xray.

I am very sorry your cancer was dismissed. I hope you can get high quality treatment going ahead and have an oncologist who takes your concerns seriously.

clinicaltrials.gov has 18 clinical trials in the UK currently recruiting for SCLC. Some of these are for previously untreated patients and may be accessible to you, if you are interested in pursuing immunotherapy at this stage.

https://clinicaltrials.gov/ct2/results?cond=Small-cell+Lung+Cancer&term=&cntry=GB&state=&city=&dist=&recrs=a


10/2015 Chest xray found a nodule as part of a physical (no symptoms).
01/2016 Upper left lobe lingula preserving lobectomy stage 2b for 1.9 cm invasive adenocarcinoma with additional 2 mm AIS nodule found in pathology.
03-05/2016 Sixteen weeks of adjuvant cisplatin/vinorelbine.
07/2016 Durvalumab adjuvant clinical trial discontinued after 1st dose knocked out thyroid.
12/2016 Revised to stage 1b (due to VPI) after new guidelines for multifocal lepidic lung cancer.
07/2019 Next scan.

July 8, 2018 at 2:34 am  #1294831    

aaron

Hi Onthemark,

Thanks for passing me this information. I would think about immunotherapy but my bloods may prevent me from being accepted. I think I could get a transfusion to get my counts up but I don’t know what could be done about my liver enzymes being high. Getting diagnosed late really puts you in a bad position, I would encourage everyone to push hard for a diagnosis, I thought I did, but maybe not hard enough.
I did have a scan a couple of years ago, there was a small nodule but nothing to suggest cancer. Maybe some of the items noted in the report could have been more significant than we thought.
Good luck when you get your results.
Aaron

July 8, 2018 at 8:18 am  #1294833    
JimC Forum Moderator
JimC Forum Moderator

Hi Aaron,

I just wanted to add to the discussion of your late diagnosis. As I’ve said, I understand your frustration, as even in a typical presentation it can seem to take forever to get a diagnosis and start treatment. I spoke to Dr. West about your situation, and he had this to say:

I’ve had a similar case, but it’s quite unusual. I just don’t think you can treat someone with chemo based on symptoms suggestive of cancer but not with a documented diagnosis of cancer. Though obviously [this patient] was right, this isn’t a remotely typical scenario. For it to take years for it to manifest itself makes it so wildly different from the standard version of small cell lung cancer that it indicates it is likely to have a very different natural history/clinical behavior in the future as well.

Although some patients diagnosed with lung cancer elect not to receive chemotherapy based on their fear of its side effects, most patients are eager to begin therapy despite the toxicities. What is forgotten is that a small minority of patients experience such onerous side effects that their quality of life is greatly diminished for the rest of their lives, and in rare cases patients have died from those side effects. Those factors make oncologists hesitant to initiate chemo without a firm diagnosis.

I hope that Dr. West’s observation that a lung cancer that presents in such an unusual fashion is likely to be equally atypical in terms of progression proves to be true in your case.

JimC
Forum moderator


Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19
4 cycles Carbo/alimta, 65% shrinkage
Tarceva maintenance
Mar 2010 progression, added Alimta, stable
Sep 2010 multiple brain mets, WBR
Oct 2010 large pericardial effusion, tamponade
Jan 2011 progression, start abraxane
Jun 2011-New liver, brain mets, add Tarceva
Oct 2011-Dx Leptomeningeal carcinomatosis; pulsed Tarceva
At rest Nov 4 2011
Since then: http://cancergrace.org/blog/jim-and-lisa

July 8, 2018 at 9:28 am  #1294835    

aaron

Hi Jim,
Thank you for adding to this, I now understand what the doctor was trying to say about how I need to think about chemotherapy very carefully. Like you say, I was keen to get started as soon as possible but even if my blood tests allow it, I really need to be realistic about the quality of life. This has given me enough courage to really think about, and influence, my decisions. My doctors are very eager for me to make decisions – which did scare me! But, as Dr West says, the disease could have a different natural behaviour to typical small cell.
Lots to think about, but good that I am now starting the thinking process better equipped.
Best Wishes
Aaron

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