godisgood
Posts:7
My mom was recently diagnosed with ex SCLC with mets to both left and right supraclavicular nodes, mediastinal nodes as well as having multiple nodules on the upper and lower part of her right lung.
She is due to begin chemotherapy on Monday.
I asked her Onco why she didn't recommended radiation and she said that it was because Mom has multiple nodules on the upper and lower part of her lungs.
Any thoughts on this?
I would want her to undergo radiation with chemo a I have read that it is more beneficial.
Thank you and God Bless!
Forums
Reply # - July 19, 2013, 02:13 PM
Reply To: Mom with ex SCLC not candidate for radiation
I'm very sorry to know your mom has been diagnosed with ex sclc. When someone has extensive stage it isn't considered curable but it is treatable to extend life and raise or maintain quality of life. Chemo treats the whole body (systemic) and is used for those with extensive sclc or stage IV nsclc. Radiation only treats the target areas and isn't helpful in extending life or enhancing quality of life; unless it's used to shrink tumor that is causing pain or pushing on an organ. Here are a link that discusses this.
http://cancergrace.org/cancer-101/2011/01/01/cancer-101-faq-i-have-meta…
http://cancergrace.org/lung/2010/04/05/an-introduction-to-lung-cancer/
http://cancergrace.org/lung/2010/08/07/treatment-of-small-cell-lung-can…
I hope this helps answers some of your questions,
Janine
forum moderator
Reply # - July 19, 2013, 05:15 PM
Reply To: Mom with ex SCLC not candidate for radiation
I'm sorry to learn of your mother's diagnosis.
Janine provided a great summary of why chemotherapy alone is the main approach for extensive stage SCLC. I hope she responds well. Please let us know if you have particular questions after reviewing some of the info in the links Janine provided, which should be quite helpful.
Good luck!
-Dr. West
Reply # - July 19, 2013, 05:38 PM
Reply To: Mom with ex SCLC not candidate for radiation
Thanks Janine for prompt and very informative reply.
I have a question for Dr. West though, in your post on SCLC 101 there was a chart of how to differentiate between limited and extensive stage. If I clearly understood it, mom should be under the limited stage coz only her supraclavicular and mediastinal nodes as well as her right lung is affected. There are no mets outside of these.
Is the presence of nodules on both upper and lower part of her right lung the reason why she is considered to be extensive?
Thank you your input Dr. West
Reply # - July 19, 2013, 05:42 PM
Reply To: Mom with ex SCLC not candidate for radiation
She was diagnosed in the Philippines and I'm afraid that our diagnostic and treatment for cancer is not as advanced as in the US.
She has no other symptoms except a nodule which was in her left supraclavicular area which she had excised and biopsied.
Reply # - July 20, 2013, 05:35 AM
Reply To: Mom with ex SCLC not candidate for radiation
The nodes crossing over to the other side of the chest maybe the reason for the staging but we do need further input in can't readily find on from previous posts. I will ask a doctor to elaborate.
All best to you, your mother, and family,
Janine
Reply # - July 20, 2013, 03:52 PM
Reply To: Mom with ex SCLC not candidate for radiation
Technically, SCLC should be staged by the same TNM system that NSCLC is staged by. In practice, we usually stage it with the simpler (and more functional) system of limited vs. extensive stage. In practice, we usually define limited stage as when all the cancer can be encompassed within a single radiation portal and extensive stage as when it can't. This judgement can sometimes be subjective. But, even if a patient is very fit (good performance status, good lung function) and you CAN do radiation it doesn't mean that you SHOULD do radiation. Cancer being large and having spread to many nodules and lymph nodes means that there is a very high probability of microscopic spread elsewhere, that's too small to see. While chemo gets almost everywhere in the body and can try to suppress even what you can't see, radiation only works where you shine the beam.
This doesn't mean that radiation can never help in extensive stage disease. When chemo works, after 4-6 cycles preventative radiation to the brain improves survival. There is controversy over whether some radiation to the chest might help after chemo is completed, in patients who respond; the radiation therapy oncology cooperative group is currently studying this question. When SCLC spreads in such a way that it causes problems in one spot (painful bony met or lung nodule pressing on an airway, for example) radiation can certainly help in those spots.
Reply # - July 21, 2013, 09:10 AM
Reply To: Mom with ex SCLC not candidate for radiation
Thank you Dr. Weiss for sharing your views regarding my mom's case.
I emailed her onco and got the same response as what you said. Now I feel that mom is getting the right treatment for her illness.
Thanks to Janine too for your fast response and willingness tp help.
God bless you both.
Reply # - July 21, 2013, 12:30 PM
Reply To: Mom with ex SCLC not candidate for radiation
I know how important it is to have a good enough understanding to feel comfortable that one is getting the right treatment. It's quite difficult to explain the relief that Grace can provide, I'm just honored to be a part of it and help out.
All best,
Janine
Reply # - September 24, 2013, 09:31 AM
Reply To: Mom with ex SCLC not candidate for radiation
Just received the result of Mom's CT-SCAN after 3 cycles of Chemo (1 Cisplatin/Etoposide, 2 Carboplatin/Etoposide). Unfortunately there was no change in the lesions found during her diagnosis last July. But at the same time there is also no development of new lesions.
I would like to ask your opinions as to what options are available for my Mom as of the moment?
a. Does she continue her current treatment in the hopes that she will eventually respond to it?
b. Is the result of three cycles enough to gauge her general response to this line of treatment?
c. Switch to a 2nd line in the hopes of achieving better results in the reduction/ eradication of her lesions.
Mom has taken her 3 cycles so well, we thought that surely, this must be an indication that it is working, apparently not. We feel so devastated, but we are not giving up hope.
Any information you can provide will be highly appreciated.
Thank you and God Bless.
Reply # - September 24, 2013, 10:25 AM
Reply To: Mom with ex SCLC not candidate for radiation
I'm sorry your mom didn't get the results she wanted. I will ask a doctor to reply to your questions. I hope she remains stable for a long time.
All best,
Janine
Reply # - September 24, 2013, 05:13 PM
Reply To: Mom with ex SCLC not candidate for radiation
Hi,
In cancer, we do view stable disease as a good thing. Of course, we would like to see the cancer shrink. However, many times we do not see this and as long as things are not progressing, I would continue the therapy. In SCLC, I have seen that sometimes additional cycles are needed. Since there are few treatment options in this disease, I would not switch to another line of therapy.
It is reassuring to know that she is tolerating the chemotherapy well.
Best,
Cathy
Reply # - September 24, 2013, 07:23 PM
Reply To: Mom with ex SCLC not candidate for radiation
Thank you Janine for always being there to offer words of wisdom and comfort. I am grateful to have someone like you in this forum
To Dra Pietanza, I appreciate your valuable opinion regarding my mom's case. It gives me comfort to know that stable is good. I guess I placed so much hope on SCLC generally being more responsive to chemo that we felt down when there was no reduction after 3 cycles. Mom is slightly depressed because she feels that all the inconveniences she went through were for nothing. It is my hope tht after reading this she will feel better.
Thank you and God Bless.
Reply # - September 25, 2013, 09:26 AM
Reply To: Mom with ex SCLC not candidate for radiation
Mom emailed me about her consultation with her Onco today. She would just have one more treatment and from there will be monitored with follow-up check-ups.
Is this normal protocol for resistant cases like my mom's? Do you think that additional treatments will make any difference? Is there anything more that can be done?
Please help, I am so confused right now.
Reply # - September 25, 2013, 10:51 AM
Reply To: Mom with ex SCLC not candidate for radiation
Thank you for your sweet statement. I'm so thankful for Grace without whom I'd be a much bigger mess.
I've pasted some quotes from a blog post written by one of our faculty who has a specialty in sclc. Dr. Gadgeel describes limited stage first then extensive stage starts somewhere in the middle of the article. It was written 3 years ago and still is the standard of care today. http://cancergrace.org/lung/2010/08/07/treatment-of-small-cell-lung-can…
" Assuming that the cancer is shrinking or stable and the patient is tolerating the treatment without significant side-effects, the treatment is extended for 4 or perhaps up to 6 cycles. There are no data to suggest that extending treatment with this chemotherapy beyond this point has any benefit."
"After this fixed duration of treatment, patients are monitored with physical examination and scans to assess if the cancer is remaining stable. This assessment is usually done every 6-8 weeks. Unfortunately, it is expected in ED-SCLC that the cancer will show evidence of growth again, at which point the next chemotherapy treatment is started or consideration of a focus exclusively on symptom management."
Some of the titles that follow the heading "Treatment of Extensive Stage Small Cell Lung Cancer Patients" are,
Second Line Treatment
Retreatment with Cisplatin (or Carboplatin) and Etoposide
Subsequent Chemotherapy
This article will go a long way in helping you understand what your mom's options are. Such as doing 4 cycles of the platinum doublet then break then scan and possibly start a 2 line of treatment, which is what her doctor is suggesting.
I'm going to continue in another post...
Reply # - September 25, 2013, 11:10 AM
Reply To: Mom with ex SCLC not candidate for radiation
Another decision point is when to treat and when focus on comfort care alone (not to be confused with giving up). Treatment decisions are made with an equal dose of quality of life and longevity. Every person is different so treatment decisions are made with those most closely involved with her treatment and everyday living. If you're not sure you're getting the appropriate treatment it's always appropriate to get a second opinion from a specialist. This blog from Dr. Weiss is very helpful when considering a second opinion. http://cancergrace.org/cancer-101/2011/11/13/an-insider%E2%80%99s-guide…
While Grace isn't in a position to make those decisions through a forum setting we are here to help you understand how to care best for those with cancer, so read through the info I've posted, consider how it fits your mom's situation and don't hesitate to ask any questions you have.
All best,
Janine
forum moderator
Reply # - September 25, 2013, 08:29 PM
Reply To: Mom with ex SCLC not candidate for radiation
Janine,
Thanks so much for providing such a great summary of some big questions. I really agree with the strategies highlighted by Dr. Gadgeel, specifically that more is often not better.
Good luck.
-Dr. West