Slow growing sclc

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This topic contains 17 replies, has 6 voices, and was last updated by  erka9132 1 year, 6 months ago.

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May 8, 2016 at 3:26 am  #1273958    

erka9132

Hi I came on to this site to look for info for my mom and realised that over the years a number of people have been asking about sclc and when it might have started. Three years ago my mom had siadh, a CT scan was clear. After this was controlled she went home and weeks later the low sodium appeared. Another CT scan showed a 2cm nodule, must have been very quick growing? A biopsy confirmed SCLC and it was also in her lymph nodes. Before treatment could be started the tumors were shrinking and no action taken taken. Roll forward a year and a small tumor was noted on the adrenal gland. Roll forward to now and the tumor is growing and treatment started 3 years after initial diagnosis. In our journey we have come across others with slightly similar tales, yet when speaking to very experienced oncologists they have some disbelief that it could have been sclc three years ago. I was going to ask if we should have started treatment 3 years ago but this is probably not a fair question. But the information is probably worth sharing and I did wonder if any of the doctors or staff on this site had encountered anything similar. Maybe the chemo will have a different impact on something behaving like this? The SCLC was confirmed at two different labs, in two countries.
Thank you all so much.
Erka

May 8, 2016 at 10:08 am  #1273964    
JimC Forum Moderator
JimC Forum Moderator

Hi Erka,

Welcome to GRACE, and thank you for sharing your story. I am not a medical professional, but any scenario in which SCLC is confirmed yet disappears without treatment is very unusual, as lung cancer tends to grow over time. SCLC in particular tends to grow rapidly. On the other hand, cancer is not always known to follow rules, so this type of unusual situation is not unheard of.

Good luck to your mom with her treatment.

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

May 8, 2016 at 11:59 am  #1273967    

erka9132

Hi Jim,

I can provide more details if it would help anyone. Mom is on chemo (etoposide and carbo), and we wondered if anyone here had experienced a sclc that was slow growing. From our limited knowledge, we know that the chemo targets cells that are multiplying quickly. If the cells are not multiplying quickly, should we be looking at a different chemo?

Thank you so much

Erka

May 8, 2016 at 1:51 pm  #1273970    

cards7up

Wish my Mom’s had been slow growing. From beginning to end for her was only 6 weeks and one chemo treatment. Good luck to your Mom. It is very rare I think for it to happen this way, but as Jim said, cancer is not known to always follow rules. Take care, Judy


Stage IIIA adeno, dx 7/2010. SRS then chemo carbo/alimta 4x. NED as of 10/2011.
Local recurrence, surgery to remove LRL 8/29/13. 5.2cm involved pleura. Chemo carbo/alimta x3. NED

May 9, 2016 at 11:04 am  #1273984    
catdander forum moderator
catdander forum moderator

Hi Erka,

Welcome to Grace. I’m so sorry your mom is going through this. Yes it’s very rare to hear a story like this not in my 7 years on Grace however I too am not an oncologist. All chemo works the same way in that it attacks dividing cells. I wouldn’t expect your mom’s situation to be the usual though including how well she responds to treatment. Hopes for the best are always in order.

All best,
Janine

May 10, 2016 at 12:47 am  #1273993    

erka9132

Thank you all for contributing. Although moms sclc has been slow growing, she has still experienced a lot of symptoms, so it hasn’t been an easy ride for us by any means. I did come here to see if we should have started treatment three years ago but when I rooted around the site my interest was sparked by others who felt that they were experiencing symptoms years before there diagnosis (or in some cases the person never returned to the forum so we will never know). What I did think, was that maybe slow growing sclc isn’t as rare as we thought? Posts by Buroang (symptoms for nearly 2 years, never updated us with diagnosis), Simon 54 (symptoms 2 years before), TradingDavid (mother had symptoms years before), David (symptoms a year before) and there were some others. As Jim reiterates, cancer does not follow rules, so always worth bearing this in mind and maybe a defined treatment path will be documented for slower growing sclc.

Thank you all so much

May 10, 2016 at 12:02 pm  #1273999    
JimC Forum Moderator
JimC Forum Moderator

Hi erka,

It’s certainly true that it would be best if these slow growing SCLCs could be detected earlier. Unfortunately, many patients have non-specific symptoms and many also have small lung nodules, the vast majority of whom do not have lung cancer. If surgery/biopsies were performed on all of such patients, there would be a very high percentage of unnecessary procedures, each of which entails risks. It’s definitely a catch-22, and there isn’t currently an answer to the problem.

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

May 10, 2016 at 1:58 pm  #1274000    

cards7up

The thing with many of these symptoms is that they can also be caused by other illnesses. Without a biopsy, there’s no other way to diagnose lung cancer. They are now coming up with blood tests, but I don’t know how those will work either. But it could be a beginning for situations like yours to avoid invasive surgeries.
Take care, Judy


Stage IIIA adeno, dx 7/2010. SRS then chemo carbo/alimta 4x. NED as of 10/2011.
Local recurrence, surgery to remove LRL 8/29/13. 5.2cm involved pleura. Chemo carbo/alimta x3. NED

May 11, 2016 at 12:31 am  #1274009    

erka9132

Thank you Everyone, a blood test would not have helped my mom as she was diagnosed through biopsy. Perhaps in the time period before this a blood test could have identified it earlier as she wasn’t herself for a while. What I have found difficult to understand is the almost certainty that people put on the fact that SCLC would not be giving symptoms for years without death if no treatment was available. My mom is alive after 3 years with confirmed SC and has only just started treatment.
Looking for sites to try and guide us through this, we have come across what seems a not insignificant number of cases that people felt that they may have had the symptoms for some time before diagnosis, yet this seems to be given responses that SC just does not behave in this way.
What I have only just thought about is that in the US there are tens of thousands of cases of SC a year and only a small proportion, probably biased towards those with unusual presentations, come asking for advice. All we can do is hope that treatment is successful and maybe highlight that fact that we can’t rule out SC based on length of illness. I’ll update you when we get some feedback on moms treatment.

Thank you all so much

May 11, 2016 at 10:57 am  #1274012    
catdander forum moderator
catdander forum moderator

Erka,

I sort of understand what you’re talking about when it comes to extremely unusual situations. My husband’s has been one such situation. Really all are different your mom’s has a facet of which is usually determined to have an alternative explanation. Don’t let that worry you, you have enough on your plate. Doctors will treat the best they can. Another secret about cancer treatment, it’s very difficult to ever guess how someone will react to treatment, even the most typical cases.

I will ask an oncologist on our faculty to comment. While they are very busy with their own practices and research endeavors they are tops in explaining in laypersons terms and passionate about educating us so we can be a part of the team.

Following is a link to a post about a theory that may never be able to proven or disproved. I’ve noted it as an example of how we all too often can’t explain cancer. BTW, my husband spontaneously stopped smoking about 3 years prior to diagnosis though he started back a couple of months later, stopping for good prior to surgery. http://cancergrace.org/lung/2009/11/30/can-smoking-cessation-be-a-presenting-symptom-of-lung-cancer/

All best,
Janine

May 11, 2016 at 11:37 am  #1274013    
Dr Pennell
Dr Pennell

I have never heard of a small cell lung cancer growing slowly over years, but of course we usually only see them once they become advanced enough to cause symptoms so it is often impossible to know how long they have been there. I personally have never seen a true SCLC case that did not grow aggressively. We do know that a small subset of SCLC patients have tumors discovered at an early stage and can be cured with surgery, which is rare enough that I have always wondered if perhaps there is a group of SCLCs that have a different biology that is less aggressive.

There are also some other possibilities. Neuroendocrine cancer has a spectrum of aggressiveness, and it is possible that some cancers that are called SCLC could truly be lower-grade neuroendocrine tumors (like carcinoid) and were just misclassified.

There are also rare cases of cancers regressing spontaneously, although this isn’t common for lung cancer and is classically seen in more immunogenic tumors like melanoma and kidney cancer. However, we know that immune therapies can work in SCLC and so it is conceivable that once in a while the immune system causes the cancer to regress without treatment and keeps it in check for some time. We also know that patients with autoimmune paraneoplastic syndromes may have a better prognosis. Perhaps that is what happened, but I don’t think we would ever be able to say for sure.


Nathan Pennell, MD
Associate Professor, Solid Tumor Oncology
Cleveland Clinic Taussig Cancer Center

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

May 11, 2016 at 11:51 am  #1274015    

erka9132

Thank you again, fascinating article. What is pertinent is that my mom gave up smoking a few months before diagnosis, it started to make her feel sick. I am pleased that she is now getting treatment but can say for a period I let anger rear its ugly head and was trying to question decisions that had been made. Now I understand that they were made for a reason and in fact the team looking after her seem so dedicated to her welfare that I feel ashamed that I was looking for evidence to show that they should have done things differently. Great to see that your husband has been NED for some time, he must have had a good team too. Thank you so much, this site has been a very good help to us.

May 11, 2016 at 4:16 pm  #1274016    

onthemark

Janine,

I find the phenomenon of smokers quitting prior to a lung cancer diagnosis, even without symptoms, intriguing because this is precisely what happened to me and its spooky too.

I quit after 34 years of smoking on July 14, 2015. I didn’t have a cough or shortness of breath, I was just fed up with smoking — tired of being an addict and not enjoying it at all.

Then I got a bunch of tests including colonoscopy, mammogram, physical, mole check and various other tests concluding with a chest xray and pulmonary function test in October 2015 because I wanted to be sure I was ok. Well it turns out I was not ok.

Chest xray showed a nodule in the lung, went on to VATS and now chemo (almost done). I want to emphasize that I had absolutely no symptoms driving my quit or getting me to get these tests. My mother had two independent cancers (breast and colon) before she turned 50 so that was in the back of my mind.

One thing that wasn’t clear from reading the article, is it really true that the risk of lung cancer goes up for a few years after one quits relative to someone who keeps smoking? Here is a quote from the article:

Although we don’t talk much about it, we’ve known for some time that the risk of lung cancer exceeds that of continuing smokers for a few years after quitting.

Is it possible that quitting triggers lung cancer? I find this hard to believe but with cancer anything is possible and certainly quitting is a big shock to all the tissues in the lung so it is conceivable.

May 12, 2016 at 1:46 pm  #1274018    
catdander forum moderator
catdander forum moderator

The theory behind this is that it’s very rare that people spontaneously stop smoking without planning or having health or traumatic issues for stopping. It’s also been noted that some of those people who did spontaneously stop also developed lung cancer. We don’t know if there is even a connection but if there is it’s not thought that stopping causes the cancer but there may be minute triggers that happen when lung cancer is developing that also trigger some people to just stop.

There’s no thought or theory that stopping causes cancer. I remember a discussion on that when this was written. There’s plenty of evidence that the longer it’s been that one stops the less likely one develops cancer or other respiratory issues. The triggers that cause this spontaneous stopping is thought to be associated with the development of cancer.

I hope that’s clear.
All best,
Janine

May 12, 2016 at 11:48 pm  #1274024    

erka9132

Thank you for all this information and the input from Dr Pennell has helped us accept that we are in a rare situation and that it must be as difficult for the doctors to tackle this as it is for us to come to terms with it. Just hearing this information from such a respected oncologist reassures us of how unusual the presentation is.
Thank you all so much.

May 14, 2016 at 2:25 am  #1274037    

erka9132

The carcinoid suggestion by Dr Pennell was interesting, my mom seems to think that was mentioned to her in the past. Do you know if carcinoid would cause siadh and also would it be likely to respond to chemo?
Thank you all so much.

May 14, 2016 at 5:00 pm  #1274041    
JimC Forum Moderator
JimC Forum Moderator

Hi erka,

I would not really expect a carcinoid tumor to cause siadh, since these tumors do not typically grow rapidly or spread, limiting their effect on most bodily functions unrelated to the site of the tumor. Also, carcinoids typically do not respond to chemo, as stated in this page from the American Cancer Society.

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

May 15, 2016 at 2:55 am  #1274048    

erka9132

Thank you, the post gives us confidence that the sclc diagnosis is likely correct. We will be hoping mom gets a good response to chemo.
Thank you very much for all this information.

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