Just diagnosed with NSCLC squamous cell carcinoma

[fauna13]

Hello,

I posted elsewhere on the site earlier in the month with questions regarding a mass that was incidentally found on my mother's ct scan.  Today we learned, after a mediastinoscopy and bronchoscopy, that the preliminary pathology report states NSCLC, squamous cell.  So far, we have only met with the surgeon, and expect to meet with the oncologist (and radiation oncologist if we request him) next week.  I have a number of questions and am sorry for the length.  I have read many posts here to try to find answers but find myself getting more and more confused with how much information is out there.  I'm just going to list my questions in no particular order.  If you have anything to offer, even just about one of the questions, I would love to hear it.

1. I was told by our second opinion hospital that the tumor should be tested for a variety of mutations to facilitate best treatment.  However, the tumor was not biopsied--4 lymph nodes were removed for further pathology testing.  Can the cancer's mutations (if any-- I understand, I think, that these are unlikely with squamous cell?) be determined from samples of the lymph nodes or does the actual tumor need to be biopsied?

2. An oncologist friend of a friend suggested I ask that a portion of the tumor be saved in case oncologists wanted to do any additional testing on it in the future.  However, both our first and second opinion hospitals want to do chemo before surgery (one wants to do chemo and radiation together before surgery).  Will there be anything left of the tumor to test if its is theoretically "killed" by the chemo and/or radiation?  Or, will this info come from the lymph nodes that were sampled today?

3. I feel that I have read, either on this site or another, that lung cancer with mediastinal lymph node involvement makes it a stage 3b cancer.  However, the surgeon said repeatedly today that one of the mediastinal nodes are definitely involved and that it was stage 3a.  Can anyone clarify this for me or suggest what questions I might want to ask during the next appointment to get this clarified?  Can a lung cancer be 3a with mediastinal node involvement?  There is also a node in the hilum involved (I think that is the correct word) but this one is close to the tumor so apparently not as important.  

4. Our first opinion hospital is suggesting chemo followed by surgery or radiation.  The surgeon said he will push for chemo followed by surgery as he thinks this offers a better prognosis given the limited local nature of the tumor and the fact that the nodes are not "bulky".  I asked the surgeon why he/the hospital don't recommend chemo/radiation together followed by surgery.  He said that he and the institution both agree that the morbidity rates of such a surgery following radiation are higher.  He said this is something that is often institutionally determined and varies by institution.  He said he will do it if that is what we want, but that isn't his first recommendation.  Our second opinion hospital says chemo/radiation first followed by surgery.  I know I have asked this question before, elsewhere on this forum, and I know I have received responses (thank you for that).  However, I am still not sure how to negotiate this decision.  I've read on various large cancer center sites etc that long term survival rates are better with chemo/radiation concurrently followed by surgery.  The 2nd opinion hospital stated right away that a lot of hospitals do not recommend this as they think it makes surgery more difficult.  This is exactly what her surgeon said (from 1st opinion hospital).  I cannot determine whether we should trust his opinion or whether he thinks this because he is working at an institution that does not follow this approach and hence he has less experience operating post radiation.  My list of thoughts and questions here goes on and on.  On the one hand we as a family (including my mother) are inclined towards a more aggressive approach and radiation (because she was cured of an aggressive breast cancer 13 years ago with surgery chemo and radiation).  On the other, it is hard to select an option with higher morbidity rates with so little information. 

5.  I see that there are many, many possible therapies for lung cancer, depending on what is found on pathology.  I am concerned that the hospital will not test for the right things.  I have asked the general question and they say they test for all appropriate mutations.  Is that a sufficient answer or should I be more informed and ask about specific mutations (or other tests) that hospitals do not commonly test for that might be critical to my mom's care?  

6.  I see many people on the site discussing drugs and treatments with so much expertise.  I am impressed and also overwhelmed by this as I feel that I am so far from knowledgable on the topic.  As a result, I fear that I may fail my mother by not knowing enough to ask the right questions, request the right drugs, etc. to give her the best care/outcome possible.  How can I learn about all of the newest options for someone with her cancer?  I have done and continue to do a lot of online research, but how does one ever know that they have found "everything"?  How can I know that I am not missing some major option that I should be asking for?

7.  Are clinical trials something we should be looking into as soon as possible, or should be follow the recommended "standard" treatments first?  Her surgeon keeps repeating that this cancer is treatable and curable.  I assume implicit there is treatable and potentially curable.  Do we believe him or move quickly towards clinical trials since it is a stage 3 cancer?

 

Thank you again.

 

 

[Tom Galli]

fauna,

Q1. Can mutations be detected by lab from biopsied lymph nodes? Yes. It is almost certain that proximal lymph nodes display the same type and markers as primary tumor. Squamous cell NSCLC has one significant marker -- the presence by percentage of PD-L1 and marker that predicts effectiveness for immunotherapy.

Q2. Normally a node provides enough material for a second biopsy evaluation. I'm told samples are maintained for very long period of time for repeat testing.

Q3. Can lung cancer be staged at 3A with mediastinal lymph node involvement? Yes. Read this. Staging is a physician's judgement call. My oncologist staged my LC at 3A while my surgeon staged it at 3B. Staging guides development of a treatment plan. With 3A or 3B, surgery may still be an option. With Stage 4, surgery is generally not an option.

Q4. The question of pre-surgical radiation is a judgement call.  My experience was a surgical judgement call, not an institutional call.  But, my treatment plan was developed in the period before tumor boards where practitioners decided on a treatment without reference to a collective opinion.  The surgeon (institution) advising no radiation because of post surgical problems is correct. This happened to me, but the surgeon who advocates pre-surgical chemo and radiation is also correct. Again there are no hard and fast rules.  

Q5. With Squamous cell, the number of remedies is narrowed.  There is combination chemotherapy and conventional radiation, surgery, precision radiation and immunotherapy.  Squamous cell does not respond to targeted therapy.  

Q6. We never have complete knowledge. Now that Squamous cell is identified, your literature search for studies underway ought to neck down substantially. Your medical oncologist ought to be the subject matter expert on studies underway (mostly immunotherapy for Squamous).  Ask him or her how they keep current with potential new treatment alternatives.

Q7. Perhaps the surgeon is trying to give a simple answer to a difficult question.  All lung cancer is treatable.  There is care with curative intent -- surgery and precision radiation and sometimes conventional chemotherapy and immunotherapy -- and there is treatment to to prolong life (the same treatment alternatives).  But, of all cancers, lung cancer has very very high recurrence rate after treatment with a curative intent. I believe surgery offers the best outcome in terms of arresting your mom's cancer.  If surgery is on the decision table, I'd take it.  I'd also keep researching for further developments because there is about a 60-percent probability that stage 3 lung cancer will recur after successful curative care. So many here have had follow on treatments for recurrence after surgery. So if it were me, I'd take the best chance at achieving no evidence of disease (NED), surgery, and ensure your mom abides by the post surgical scans that become a lung cancer survivor's new normal life style.  

Stay the course.

Tom

[fauna13]

Thank you so much for your response.  It was very helpful as it allowed me to ask more informed questions at the appointment.  

In all, appointment was unsettling.  We met with the medical oncologist first and he suggested low dose chemo combined with radiation, followed by immunotherapy with Durvalumab.  He was very excited and optimistic about Durvalumab, citing all sorts of statistics.  He said surgery wasn't an option as the cancer had spread into the central lymph nodes.  At the end of the appointment the surgeon came in and said he was recommending surgery as central node involvement was single station and he felt he could systematically clear out all of the nodes, as well as easily remove the mass by removing the middle lobe.  Immediately the medical oncologist said we should take the surgery option, that he didn't offer it because he didn't think it was doable, that this surgeon is very conservative so if he says he can do it he can.  His new plan was regular chemo followed by surgery and possibly radiation if anything small is found in the lymphs during the surgery.  No immunotherapy at this point.  To be considered later if the cancer returns.  

We then met with the radiation oncologist.  His opinion was the hardest to decipher.  He said he would also go with the surgery over radiation although studies do not support that claim and in fact show there would be no benefit to surgery over radiation.  He said adding Durvalumab to the mix after chemo and surgery would be a no brainer even if there are still no studies to defend this claim and we should insist we get the Durvalumab.  He then said something like, surgeons here do not recommend chemo/radiation followed by surgery as surgeons here believe that this makes the surgery more difficult.  Additionally, the medical oncologist said, as soon as he walked into the room, I see you live close to Hopkins.  Will you be getting treated at Hopkins?  

We got the impression that the medical oncologist was possibly recommending Hopkins over the current hospital and that the radiation oncologist was suggesting that we go somewhere that offers chemo/radiation prior to surgery.  Does any one have experience interpreting statements such as these?  Should we be reading between the lines  and seeing these statements as suggestions? 

Finally, the medical oncologist said he wanted to test for a midline tumor.  Does anyone know why this might be?

Thank you all again.

 

 

[BridgetO]

Yep, it can be confusing. I believe medicine is an art. One based on science for sure, but still a lot of intuition and skill developed over the courss of years of practice. So this is where you gather as much information as you can and then make deicisions. Your mom might consider a second opinion as a way of gathering information. Maybe at Hopkins, since it's close. (not an endorsement of Hopkins because as a moderator I'm not allowed to make those). Getting a second opinion doesn't mean you have to go with either that opinion or that doctor.

Here's a bit from my many-cancers experience. My lung cancer was early stage and my  treatment was standard and not controvesial. But earlier I had  rare form of gynecologic cancer where the treatment was not so clear cut. I have insurance through a HMO and was limited to its doctors.   I opted to get  a second opinion at our local teaching hospital and sought out someone who had a lot of experience with these rare cancers (about which therere no published studies). She recommended some specific chemo in addtion to what I'd already had. I went back to my HMO med onc and told her what the university doc recommended and that I wanted that chemo. The HMO doc agreed to do it, even though it wasn't what she recommended. She agreed tthat it was reasonable and she knew, I think, the expertise of the other doc. So I had that chemo and all went well.  

Good luck sorting our all the options!

 

[PaulaC]

Fauna,

I don’t have a lot of answers or medical advice but wanted to tell you that my diagnosis is almost exactly the same has your moms. I was diagnosed with NSCLC  stage 3b. I was told surgery wasn’t an option because it had spread to my lymph nodes in the middle of my chest.  I did 7 weeks of Chemo and 30 days radiation.  The tumor and lymph nodes had responded so well to the treatment that the surgeon felt he would be able to do the surgery and get all the cancer. My last Chemo was July 16th and I had surgery October 5th. I’m now NED so chemo, radiation and surgery were successful for me. I pray you and your mom get the same results. 

Paula

[Tom Galli]

fauna,

Throughout this process, keep in mind Bridget’s point about medicine being an art. There can be a number of curative ways to treat and resolve your mom’s cancer. Both you and your doctors have choices and in lung cancer now, that is a good thing. So, let’s approach your choices from a different prospective. 

Thinking about a which medical discipline can eliminate tumors, the medical skills of surgeon and radiation oncologist are the disciplines. Which can do a better job. My view is the surgeon. He or she can actually see what needs to be removed and assess how much surrounding tissue needs to be removed to get clear margins. So if the surgeon believes surgical resection can address both tumor and lymph nodes with high confidence, I’d use the surgeon. 

But lung cancer treatment is a team sport. With mets in the lymphatic system, treatment is needed to kill circulating tumor cells in the blood and lymphatic systems. That is medical oncology work. Your mom may end up getting chemo before and after surgery, but she’ll get chemo. 

Recall that lung cancer has a nasty property of recurrence. Your mom could have a successful surgery and chemo with a no evidence of disease scans and 6 months to a year later, a diagnostic could pick up another tumor or nodule. Then the radiation oncologist and medical oncologist could combine efforts to address the recurrence. 

Thankfully, we have options in lung cancer care these days. The options cause decision difficulties but the options all work. 

Here is my take on where one gets treatment. Surgery is a team sport. I’d get mine at a place that did thousands of thoracic surgeries a year. 

Conventional chemotherapy can be administered almost anywhere without a change in outcomes. I’d chose a cozy clinic near my house for chemo. I’d ensure that clinic had CT and PET scan capability because I’d want that clinic to perform all my scans after treatment. 

Depending on the immunotherapy drug, administration may require a sophisticated cancer treatment center. Many immunotherapy drugs have moved to first line standard of care therapy. These can be administered at your cozy nearby clinic with low risk. 

I wouldn’t get conventional chemotherapy or firstline immunotherapy at a cancer center. I want to be in a place where only 10 or so infusions are performed at one time rather than 50. With conventional chemo and first line immunotherapy, you are looking for the Cheers effect: everyone knows your name. 

If the immunotherapy drug is new a Hopkins-like setting may be required.  

Radiation oncology treatment breaks into two categories. Conventional radiation can generally be found at the cozy nearby clinic. Precision radiation is almost always found at a large cancer treatment hospital.  For precision radiation, your evaluation objective is like surgery. You want a place that does thousands of procedures, not hundreds. 

I wouldn’t know what your oncologist meant by a midline tumor. Midline could apply to a lot of things. 

Stay the course. 

Tom

[fauna13]

Hello all,

 

Thank you for all of your thoughts.  We now have all of our treatment options and I was hoping to see if anyone has input on which way to go.  Thankfully, all of the options involve surgery.  They are

1. Chemo followed by surgery.  After surgery, radiation if lymph nodes on 2nd biopsy are still involved (carboplatin based chemo)

2. Trimodality: concurrent chemo and radiation followed by surgery (cisplatin)

3. Immunoradiation clinical trial: concurrent radiation and immunotherapy with IMFINZI® (durvalumab) followed by surgery and possibly though not necessarily chemo

 

The center offering option 1 says that radiation is toxic and should be withheld unless necessary.  Also, that she should not have it prior to surgery as it increases complications.  Also, that she cannot get durvalumab with surgery.  She can decline surgery and get it however, though they do not recommend this, saying surgery is best.

Our second center is offering options 2 and 3.  They believe radiation is important and significantly reduces local recurrence (their stats are by up to 30%).  They say she's a perfect candidate for trimodality treatment as she is otherwise very healthy.  Also, that trimodality is what they consider the gold standard for treatment in her case (cancer in the central lymphs but to a very minimal extent).  However, we are also told that durvalumab offers a huge hope for remission, likely a much larger hope than chemo.  However, they have not data so are underlining the risks.  

 

I have more info on their thoughts etc. but wanted to spare you unnecessary details.  If you have any questions please ask me and hopefully I will know the answer.  

 

Thank you again.

[Tom Galli]

Fauna,

There is a well understood but not generally cited benefit to radiation for lung cancer treatment. It is called the abscopal effect.  Read about it here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4828732/

That perhaps explains the 30% reduction in recurrence. Also, we are hearing very good things about durvalumab. Several on this forum are taking it with good results.

You’ve got 3 good plans to choose from. I can’t help you make the decision. 

Stay the course.

Tom

[fauna13]

Can anyone share their experience with/response to cisplatin etoposide chemo?  What was your schedule?  My mom will be beginning this the 31st, concurrent with radiation.