Hi Grace,
I posted around 18 months ago regarding a very small nodule. As thought, the nodule didn’t grow and was therefore benign and unconnected with the symptoms I had been experiencing in 2014,2015. Earlier this year I thought that maybe some sort of malabsorption was at play and could explain the symptoms, my main concern was an underlying malignancy. Change of diet didn’t help and my doctor explained that it would be something I needed to learn to live with. Three weeks ago I felt very under par and I had a CT scan which showed a suspicious lymph node between my lungs and a spot on my liver. Just prior to this I had a lung function test which was normal. Further testing showed small cell lung cancer in the node. I see my oncologist next week where we will talk about a treatment plan. Given that I have been suffering with this for over three years I was wondering if conventional chemo therapy would be optimum as I thought this would be targeting rapidly dividing cells. Is there any information on what the response might be to chemotherapy when it looks like the tumor is not growing rapidly? Surgery has been ruled out. Is there a more appropriate treatment out there for cases like this? I have had a search of all the resources I know and just can’t find more information.
I would be very grateful for any information that you might add.
Robert
Reply # - October 25, 2017, 02:44 PM
Hi Robert,
Hi Robert,
I'm so very sorry you've been diagnosed with cancer. As you know anytime a cancer is found to have metastasized without a primary tumor it's a rare occurrence. If the type of cancer is known it's usually treated like any other metastatic cancer of that type, in your case sclc. However you've got suspicions that your cancer may have another unusual feature of being very slow growing. It's possible. In a case where extensive stage cancer is quite indolent treatment types remain the same, systemic, but are given less often/only when needed, such as 4 cycles of a platinum base doublet then take a wait and see break, scanning every 3 months until progression (a pretty typical approach even if it' not indolent). With indolent cancers a person can go several months or more before more treatment is needed, an excellent position for a person with metastatic sclc to be in. Dr. West describes this type of treatment in most of his posts on BAC because BAC is the usual place you see an indolent lung cancer. But it can and does happen in other types of lung cancer and the same treatment schedules can be followed so to allow the person to get the most out of treatments for the longest amount of time.
If the cancer is in the liver then the cancer would be considered extensive but if not it's possible the cancer is only in the lymph node and could be removed before chemo with a possibility of cure.
Whatever the case these are rare occurrences so not really studied or understood very well. In a case such as you've described a second opinion is a good idea. Here's a good post on the subject, http://cancergrace.org/cancer-101/2011/11/13/an-insiders-guide-to-the-s…
I hope you do well and don't hesitate to ask questions as they arise.
All best,
Janine
Reply # - October 26, 2017, 01:08 AM
Hi Grace,
Hi Grace,
I thought, or perhaps assumed, that the cancer that was found in the lymph node was the primary and that the liver was secondary. The lymph node is mediastinal, is it correct that this is outside the lung and the cancer in this is probably a secondary? The scan report did say that the lungs are clear. I believe one option is to use radiation on the lymph node. It is good to hear that chemotherapy could be more spaced out, I am terrified of it. I have no idea if it could be slow growing or perhaps symptomatic from a very small size? Grace has been invaluable in getting to my diagnosis, I changed primary care doctor a few months ago and could show my new doctor posts from 18 months ago. This helped me to convince him that things had been going on a while. The notes transferred from my old provider were quite brief so it was useful referring back to Grace. Thank you for this.
Robert
Reply # - October 27, 2017, 06:37 AM
Did they biopsy the liver?
Did they biopsy the liver? This is something that would normally be done. You can ask the doctor what the path report showed to be the primary. They can tell this from the Immunohistochemical stains done. See link.
Take care, Judy
https://www.cancer.org/treatment/understanding-your-diagnosis/tests/tes…
P.S. I am a LC survivor and not employed by GRACE. I share my knowledge and experience only.
Reply # - October 27, 2017, 09:19 AM
There has been no biopsy of
There has been no biopsy of the liver, only a pep scan and a biopsy of the lymph node.
Reply # - October 28, 2017, 10:13 AM
Hi Robert,
Hi Robert,
When someone doesn't have a normal primary tumor but has lung cancer in the mediastinum it may be that the immune system took care of the cancer in the lung but not before it moved into the lymph system.
It's possible the lymph node is the primary even though it's not in the lung but is between them. Cancer often follows a pattern oncologists can predict, however there's usually at least one thing about someones cancer that doesn't follow a pattern. Your lack of a primary tumor in the lung and the possibility that a sclc has been active for 3 years without treatment are both very unusual. Cancer can and will do anything and all too often there are questions that no one will be able to answer. This type of situation is a good example of where the art of oncology comes into play and why many oncologists say that there are as many types of cancer as there are people who have/have had cancer. Your oncology team make decisions based on individual aspects of your case that may not fit into other cases. Too, having such unusual aspects to your cancer is a good reason to have more heads in the game, i.e. a second opinion to weigh in on how to look at possibilities.
Although you no longer have a cancer of unknown primary the info in the following link might be helpful in better understanding your situation. https://www.cancer.org/cancer/cancer-unknown-primary/about/cancer-of-un…
I would want to know for sure if he liver nodule is cancer. If it is, is it the same as the lymph node. If it is then you would probably be treated as a stage IV or extensive sclc. If there's no relation between the liver nodule (it could be just inflammation or infection) and the lymph node then I'd want to know if it's possible to treat the sclc with curative intent. The answer to these questions have pretty significant implications in treatment decision making.
I hope this helps,
All best,
Janine
Reply # - October 29, 2017, 03:36 AM
Hi Grace,
Hi Grace,
This is very helpful. I will ask about a biopsy of the liver. My next appointment is to discus and plan my course of treatment. I feel a bit more confident going to this appointment now and have a few good points to ask about.
Thank you for helping.
Robert.
Reply # - October 31, 2017, 01:45 AM
Hi Grace,
Hi Grace,
Is it acceptable to get treatment started and then get a second opinion? I met with the doctor yesterday and in some ways he gave me confidence. He seems very experienced and didn’t waiver at any of my questions. At the time, everything he said made sense. He wants to treat this cancer aggressively and the liver spot is not an immediate priority for him to hold up any treatment in order to get a biopsy. He doesn’t feel that my cancer is too different from what he has seen in the past, normally enlarged lymph node and difficult to see or unable to see primary in the lung. He said that this is classic for small cell. As for the symptoms over a few years, he sees this more often that what is document and in fact sees it more with small cell than non small cells. He puts this down to the disparity of symptoms making small cell difficult to diagnose when autoimmune or tumor chemical secretions are at play. While I was happy when he said this to me I am now questioning this when I reflect on it and have the opportunity to look at the internet. Is there anything you could add?
Thank You
Robert
Reply # - October 31, 2017, 08:17 AM
Hi Robert,
Hi Robert,
It certainly is possible to get a second opinion after starting treatment, but the downside is the dilemma you face if the second opinion doctor recommends a significantly different course of treatment. On one hand, you'd like to see if the current treatment is effective, making an immediate switch less desirable. But if the second opinion makes you feel that you are on the wrong track, you may feel compelled to switch. Usually you won't hear the second doctor say that the current treatment is totally inappropriate, but he or she may feel that a different path is preferable, so whenever you get a second opinion you need to distinguish individual preference of the physician from a clearly defined standard of care.
It is true that symptoms pre-dating a diagnosis of small cell lung cancer by several years is not a well-documented situation. In fact, at the recent Patient Forum in Cleveland, I discussed that very issue with Dr. West, and it's not something that he has noted as a pattern in his practice. So although your doctor's experience may vary, it doesn't seem to be seen on a widespread basis.
JimC
Forum moderator
Reply # - October 31, 2017, 08:33 AM
Hi Grace,
Hi Grace,
Thank you for listening to me and helping me to think straight. From what I have read, the suggested treatment is standard, so I have no concerns there now, but I will take the opportunity to get a second opinion and then reassess on any new information.
Thank You
Robert