What do I do next

This topic contains 20 replies, has 3 voices, and was last updated by  aaron 1 year, 10 months ago.

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October 17, 2015 at 7:42 am  #1271500    

aaron

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.

October 17, 2015 at 8:34 am  #1271501    
JimC Forum Moderator
JimC Forum Moderator

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


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

October 17, 2015 at 8:48 am  #1271503    

aaron

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.

October 19, 2015 at 12:45 am  #1271517    

aaron

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.

  • This reply was modified 2 years, 1 month ago by  aaron.
  • This reply was modified 2 years, 1 month ago by  aaron.
October 20, 2015 at 8:45 am  #1271527    

aaron

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.

October 20, 2015 at 1:07 pm  #1271532    
catdander forum moderator
catdander forum moderator

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/basics/definition/con-20028459

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

October 20, 2015 at 1:15 pm  #1271534    
catdander forum moderator
catdander forum moderator

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

October 21, 2015 at 3:32 am  #1271558    

aaron

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.

October 21, 2015 at 6:16 am  #1271561    
catdander forum moderator
catdander forum moderator

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.

November 24, 2015 at 10:57 am  #1271953    

aaron

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

November 25, 2015 at 5:56 am  #1271958    
JimC Forum Moderator
JimC Forum Moderator

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


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

November 25, 2015 at 6:12 am  #1271959    

aaron

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.

December 15, 2015 at 5:52 am  #1272212    

aaron

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

December 15, 2015 at 7:22 am  #1272213    
JimC Forum Moderator
JimC Forum Moderator

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


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

December 15, 2015 at 8:23 am  #1272214    

aaron

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.

December 20, 2015 at 7:32 am  #1272251    

aaron

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.

December 20, 2015 at 7:57 am  #1272254    
JimC Forum Moderator
JimC Forum Moderator

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


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

December 20, 2015 at 8:55 am  #1272256    

aaron

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.

January 14, 2016 at 6:49 am  #1272583    

aaron

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

January 14, 2016 at 9:47 am  #1272585    
JimC Forum Moderator
JimC Forum Moderator

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


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

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