What do I do next - 1271500

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aaron
What do I do next - 1271500

I am sure that I have SCLC. After a general anaesthetic last year for an appendectomy I had a sharp pain in my chest when breathing. This pain subsided after 2 weeks. Since then I have had extreme tiredness, fatigue, weight loss (but central weight gain), muscle loss particularly in arms/shoulders and now progressing to my legs, loose bowels and dull headache. I did notice these symptoms before my operation but they have become more marked. I often wake in the early hours of the morning with a need to urinate, however my bladder is empty when I go to bed and I stop drinking at 6:30pm. A urologist has confirmed that my bladder fills and empties correctly, I suspect that something is going on with ADH hormone. My cortisol is at the high end of normal (serum and 24 hour urine) and I failed to fully suppress on the 24 hour dexamethasone test, but did suppress on the formal test. I am more breathless than before when I exercise and I am constantly finding thick phlegm in my throat. The various tests I have had have shown Vit D severe deficiency, B12 deficiency and low testosterone (this seems to vary between low normal and low). Blood tests ruled out diabetes, celliacs and thyroid problems. Three CXRs have not shown abnormalities. A contrast enhanced CT revealed minor biapical scarring. A chest physician has examined the scan and does not think the scarring is significant. I am 48 years old and smoked for 25 years approx. 5 per day, giving up 18 months ago. I have been very healthy up until now and can only find lung cancer as a diagnosis that would answer all the symptoms. After all the tests I have had the doctors are not prepared to look any further for a possibility of cancer and dismiss my concerns as anxiety. Are there any tests I should be asking for, or is there a way in which I should be articulating my concerns to help the doctors understand my concerns? Many thanks for any help.

JimC
Hi Aaron,

Hi Aaron,

Welcome to GRACE. I'm sorry that you are experiencing all of these symptoms, and I don't have an explanation for their cause. But it is extremely unlikely that SCLC that does not appear on x-rays or a chest CT could be causing them. One of the problems with lung cancer is that it doesn't tend to cause symptoms until it is advanced in stage. At that point it is easy to see on a scan.

You may need further follow-up to discover a cause for your symptoms, but I don't think you should assume it is cancer.

Good luck finding a better alternative cause for your symptoms.

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

aaron
Thank you so much for your

Thank you so much for your response Jim. I'm based in the UK and have struggled to talk to anyone about this. The doctors have not really been able to communicate as well or as clear as you have. It is great that people like you are prepared to give up your time to help others. I cannot express how much I appreciate and admire what you do. Kindest regards from Aaron.

aaron
One worry that I have is that

One worry that I have is that I am experiencing endocrine paraneoplastic symptoms. I did mention this to one of the doctors and I was dismissed and recommended that I went for councilling (which I did). Trying to read up on this I get confused as some papers say that the paraneoplastic symptoms are often the first to appear while others say that they come later. Given the negative CT scan is it likely that I am experiencing a paraneoplastic syndrome? I have an appointment with a doctor next month and it would be great if I could have some questions prepared for him, otherwise I feel that I will be dismissed with a diagnosis of anxiety purely based on the negative CT. My appendectomy was in Aug 14 after which I had chest pains for 2 weeks while breathing. These subsided without any medication. However since that time (and probably a bit before) I have experienced the other symptoms mentioned in the original post with them slowly increasing in severity. My CT scan was in Apr 15. Xrays were in August 14 (pre-op), December 14 and March 15.

Once again, many thanks for being here to talk to, I feel quite alone at the moment and have no direction to take.

Aaron.

aaron
Reply To: What do I do next

Apologies for asking another question, which is basically a follow on from an earlier question. I am trying to find out more about endocrine paraneoplastic syndromes related to SCLC. I have gained central fat, redness in my face, sleeplessness, muscle loss in arms (ectopic ACTH? ) a change in urination (ADH?), and have extreme fatigue. I don’t think that my cortisol would be high enough to be classed as having ectopic ACTH but it is at the high end of normal. My sodium level is at the low end of normal so I wouldn’t class me as having SIADH. Is it possible to have some element of ectopic ACTH and ADH without the full blown syndromes? Also, as my CT scan was clear, is there a recommended next test I could ask for?
Thank you for helping, it has been hard work getting answers here in the UK.
Aaron.

catdander
Aaron,

Aaron,

As Jim said, a CT is the gold standard of finding solid tumors such as lung cancer. Without that there's nothing to biopsy.

Mayo clinic has an excellent site with in-depth basic info. Note on the left side column links to content.
http://www.mayoclinic.org/diseases-conditions/paraneoplastic-syndromes/b...

From Grace this link provides what's been written on the subject. Unfortunately it appears that without a cancer diagnosis there is nothing an oncologist can do this syndrome is usually treated by a neurologist. http://cancergrace.org/search-results?q=Paraneoplastic%20

I hope you're well soon,
Janine

catdander
Aaron, I hope you don't mind

Aaron, I hope you don't mind but I merged the 2 threads. I'd already replied about paraneoplastic syndrome on your other thread.

Best of luck,
Janine

aaron
Thanks for being such a great

Thanks for being such a great help Janine. I am now more reassured by the CT scan, I had ever heard it referred to as the gold standard test, and hopefully an endocrinologist is the right person to see next. I did see a neurologist and he did not think I had a neurology problem.
To all of you at GRACE, thanks for being here.

catdander
Your very welcome Aaron. A

Your very welcome Aaron. A gold standard just refers to the present preferred way most people do something. A CT is the best way to find solid tumors and nodules.

aaron
I thought I's send an update

I thought I's send an update as I had some blood tests run. The results were that sodium was down to 131 (ref 135-145). To me this seems to relate to my thoughts about ADH hormone. I never managed to get another cortisol reading done. But my red cell count is now abnormal low 3.88 (ref 4.5 -6.5). A couple of other readings relating to red blood cells were also abnormal. I've noticed my platelets drop too, May - 210, Aug - 185, Nov - 150 (ref 150-400). I was also wondering if my gastro trouble could be due to Pro-GRP. I can see that diagnosis is difficult (if not impossible) if there is nothing appearing on imaging. So I guess my question is do you normally wait until imaging picks something up, is it a case that as nothing was on imaging then malignancy is unlikely or is there any other option. My GP is not concerned with the blood test results but my thinking is that they don't often have to deal with a lung cancer diagnosis so there could be a chance that they are missing something.

Thank you once again for all your help, I do feel that my knowledge of cancer is increasing, just sorry that it has taken me until now and to be worried about it to start this journey.

I hope you all have a peaceful and pleasant thanksgiving.

Aaron

JimC
Hi Aaron,

Hi Aaron,

Though your symptoms and your blood test results indicate that something is going on, since nothing appears on a CT cancer would not be suspected. There are all sorts of less serious conditions which can cause abnormal blood test results. In addition, the only way to make a definitive cancer diagnosis is a biopsy, and as Janine pointed out, there is nothing visible that can be tested.

Best wishes for a happy Thanksgiving as well.

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

aaron
As always, thank you Jim. I

As always, thank you Jim. I'm glad you guys are here, it's reassuring to speak to people with such a depth of knowledge.

aaron
Can I add to this question as

Can I add to this question as I am finding lots of great info on this site which is making me think (which could be dangerous in itself), hopefully you will be able to answer this and help allay my concerns.

I agree that if nothing shows on a CT then cancer would not be suspected. However there appears to be occasions that break these rules. From another thread, Dr West states that:

<span style="font-size: large;">"We often have situations where we know someone has viable cancer cells even when they're not visible".</span>

Is this for solid tumours?

http://cancergrace.org/forums/index.php?topic=949.0

Hopefully the link above will work, I wanted to include it to make sure that I am not quoting out of context, I hate to confuse the great work that you guys do.

Are you able to expand on the situations when we know that someone has cancer but nothing showing on imaging?

Many Thanks for you guys being here,

Aaron

JimC
Hi Aaron,

Hi Aaron,

In the context in which Dr. West made that comment, he was talking about the situation in which visible cancer was treated, with the result that no further evidence of cancer could be seen. In the stage IV setting, it is usually presumed that there may be additional cancer cells in the bloodstream, which cannot be seen on imaging until they form tumors/nodules.

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

aaron
Thank you Jim. I love the

Thank you Jim. I love the fact that I can come to this site and get clarification. The internet is wonderful for gaining information, but it is so easy to read something and interpret it in a way different to the intended meaning. To me, the two way dialogue you have here is what makes the site educational rather than just informational. Again, I really appreciate your time, many thanks.

aaron
I have had a repeat x ray and

I have had a repeat x ray and it has been noted that there is increased interstitial markings possibly bronchitis. I was surprised that this was picked up after a negative ct in April. Does lung cancer (especially SCLC) ever present in this way? I first went to my doctor a year ago after suffering some weight loss and having fatigue and thick phlegm. From my expanding knowledge of small cell I would have expected to see something more significant being picked up on imaging. I was also wondering if it could have spread to the bone marrow (due to low red cells and declining platelets) but is this possible without something more significant showing on xray. Any thoughts on this will be gratefully received as I so much value your knowledge and experience. Thank you.

JimC
Hi aaron,

Hi aaron,

I think you've pretty much answered your own questions, but just to confirm it's unlikely that SCLC would present in this manner, or that it would spread to other locations in the absence of any more definitive findings in the lung. As noted before, your symptoms indicate something is going on, but they don't appear to point to SCLC.

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

aaron
Thank you for the prompt

Thank you for the prompt reply Jim, as you know I really value your input. I served in the military for 23 years and perhaps became conditioned to having enough information to make sense of any situation, so maybe I am a bit over concerned as I don't feel in control of whatever illness I have or the way to get to a diagnosis.
I must say that I have found GRACE to be really informative and a trusted source of information. I am so glad all the staff and volunteers make this site possible.

aaron
Hi Mods and Drs,

Hi Mods and Drs,

Is there a link between low serum bicarbonate and SCLC? My bicarbonate level is now abnormally low and when I have tried to research this I can find a Manchester Index Scoring system that is a predictor of prognosis of SCLC. I therefore made the link that SCLC can adversely impact Bicarbonate. Is this a fair assumption and would it relate to stage?

As always, many thanks for your expertise.

Aaron

JimC
Hi Aaron,

Hi Aaron,

I understand your frustration at not having a diagnosis, but I don't think it helps to try to work backwords from a symptom such as low serum bicarbonate to a diagnosis of SCLC. Plenty of conditions can cause this; assuming that it is an indication of SCLC is like saying fatigue or headaches are a certain indication of cancer, when those symptoms are almost always caused by something else.

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

aaron
Hi Jim, thanks for responding

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.

aaron
Hi Grace,

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

catdander
Aaron,

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

onthemark
Hi Aaron,

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-scl...

aaron
Hi,

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

JimC
Hi Aaron,

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...

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

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

onthemark
Hi Aaron,

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.

aaron
Hi Jim and Onthemark,

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

onthemark
Thanks Aaron,

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=...

aaron
Hi Onthemark,

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

JimC
Hi Aaron,

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

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

aaron
Hi Jim,

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