SCLC Cancer Team: Did we choose correctly!

[MyWifeSCLC]

I took my wife to the local hospital (not the big city of Knoxville, TN) back in late January because of stumbling and serious focus issues. Immediate ER diagnoses was critically low Na. 2 days later a pulmonologist is telling us he feels fairly certain my wife has stage III SCLC but a biopsy is needed to confirm. I started researching SCLC that very day. Everything I read said that she needed to start treatment "yesterday"! My focus is getting her treatment started ASAP. 2 days later we are "assigned" an onc. Keep in mind that we are still stunned with the cancer word. We hung on every word that the onc said, especially the part about stage III being curable and agreeing with me that treatment should start immediately. Her onc was instrumental in making that happen since "the big city of Knoxville" didnt have a bed and she still need to be hospitalized. The Sevierville, TN hospital can't do chemo so she was transferred to Oak Ridge, TN.

Several weeks after my wife's 1st cycle of chemo in the hospital, I noticed little things that irritated me and/or gave me some small concerns with the "cancer team". As time went by my concerns grew. My thought process was why "change horses midstream", especially since my research said that the treatment my wife was on was the best, not to mention standard. Additional information for you ... I (not my wife) was beat up by family members on both sides on our choice of cancer team. We basically told them to shut up, it was our decision. They wanted her to see an oncologist in Knoxville,TN and specifically with the University of TN hospital.

I'll have more information in another ongoing post for my wife's care that will help further understand my current trepidation with her cancer team. Also see a post in the chemo section on Etoposide causing darkened skin.

The purpose of this post is to start a conversation for future folks. How do you decide on your cancer team when under the gun of hospitalization, immediate need for starting cancer treatment and initial good feeling for the onc and radiologist.

Steve 

[Tom Galli]

Steve,

This is a very good topic indeed for our forum. How indeed does one choose a lung cancer treatment team? We are in shock and way behind the knowledge power curve and yet decisions need to be made. I was very fortunate to have a well respected and long tenured general practitioner who picked my team.  He called each of them and spoke at length about my medical history. He also set expectations for aggressive treatment because I was young and otherwise in good health.  During my GP visits, he reviews reports, scan results and physician notes on all my treatments.  He still does these things, and I'm fortunate to have him in my corner. 

Stay the course.

Tom

[D iane]

This is a very good topic.  Especially when SCLC (no matter the stage) is literally a race against time.  Steve, please don't 2nd guess or blame yourself.  You have been nothing short of a stellar husband, researcher, etc.  We are not doctors.  We do the best we can with the information we are handed.  Having to do this while going through an emotional and physical roller coaster is a daunting task.  You're doing great!!!!  

My husband is 60 yrs. old.  Long time smoker and drank beer daily for many years.  He did do his due diligence going to his primary once or twice a year.  He is always truthful with them and his habits.  He is a physical worker so it's reasonable to think, oh getting older, keep check on your health.  Well, he had a clear chest X-Ray in Aug. of 2018.  His labs were good, only on 1 high blood pressure med.  He suffered a fall in July 2019 while at work and that changed things.  We went to the primary.  CT of head was clear, although he clearly had a concussion.  He just wasn't himself and wasn't recovering well. So, I scheduled the CT lung screening that I had an order for and it showed pneumonia.  His primary called and he was put on an antibiotic.  He seemed to get a bit better, however, that scan also recommended a 6 week follow up.  With contrast.  That scan then showed an obstruction, or neoplasm in his right lung. The primary called (again) and recommended a pulmonologist.  I called for an appointment and he was booked well over a month out.  I then searched our city system, willing to go into the city if I had to (Philadelphia-Penn Medicine) for another pulmonologist and I found one at the Valley Forge campus that could see him 2 weeks sooner than the local one.  We too, ended up in the ER with pain and spent 4 days getting the diagnosis.  From there, I sort of knew we would be assigned the local oncologist who switch from office to office, and as it turns out I am happy with the path they choose.  I did however, on our first visit practically hand the Oncologist the 1st line treatment protocol.  He is older and mentioned the two chemo's but I handed him the NCCN guidelines that were updated in Mar of 2019 to add the immunotherapy, he of course ordered all three.  This cancer is so aggressive.  We went from nothing to metastatic disease in a period of what?  8 weeks?   12 weeks to absolute pathology and final diagnosis.  It was a very, very trying time.  Our team assured us that chemo would help, and today, almost 6 months later he is doing OK.  The hardest part is not knowing. I don't think it can be helped, it is just the nature of the cancer and how a patient responds to the treatment, IF a patient decides to go through with it.  In all my research, most people do.  It's a survival instinct.  No one wants to just give up, however, you do need the right team in place to help guide you from active treatment to palliative care, and then to hospice care.  Not an easy road.   I feel for all of you out there facing this and wish you all peace.

 I know there are patients that have lived years, and some who have lived months.  I don't know where we're headed.  Doing the best we can with the best medical guidance and care available.

 

[BridgetO]

For me, it's helpful to think of "good choices" rather than "the correct choice". I think that most situations there are a range of good choices (and admittedly some not-so-good ones.)  That perspective keeps me from stewing too much over decisions or indulging in a lot or regret afterwards, We do what we can with the information and resources we have at the time.

[just me]

Hi Steve,

I have often wondered the same thing.  How do we know we are making the best choices? We are at being treated in a highly qualified hospital in Boston, yet I felt from the beginning that they aren't being aggressive enough. We were placed in the palliative care category from the very first appointment. Four rounds of carboplatin, etoposide and tecentrig, followed by just the immuntherapy for 3 cycles. We now have disease progression.  I think we are all doing the best we can and we really dont have the time to  "shop around". 

You are not alone.  

Cindy

[MyWifeSCLC]

My wife was recently turned down by 3 medical oncologist from University of Tennessee Cancer Institute in Knoxville, TN.  Recall that we were looking for a different medical oncologist due to lack of communication by her current onc.  This was an extreme disappointment because we assumed (incorrectly) that my wife would have a different oncologist by now. Only 1 of the UT oncs gave a response as to why and his comment was PCI (not HA-PCI) and Topotecan were consistent with current guidelines.  I talked specifically about those 2 items in a letter that I was required to write to the UT Cancer Institute which seemed odd.

We could always ask for another medical oncologist within the same network but I am not in favor of that.  I assume that Oncs within the same network would discuss her case and what if a new Onc also turned her down.  This very disheartening!  The 2 "well-known" cancer institutes in the area (Knoxville, TN) are Thompson Cancer Institute and UT Cancer Institute and neither have given us something to feel confident about.

When we meet with my wife's oncologist after next weeks PET scan, I will be bringing up second-line treatment possibilities to see if he is willing to talk about them in detail which he has been unwilling (via nurse practitioner) to so far.

Steve

[Tom Galli]

Steve,

Your wife's experience is unusual and is cause for disappointment. Let me do some digging off line and see if I can generate some recommendations.

Stay the course.

Tom