Oncologist recommendation in New York City

[afeldman43]

Hi, my mother in law has just been diagnosed with lung cancer. We are still having preliminary tests run but I'm wondering if anyone has recommendations for oncologists in New York City.  She's being seen at NYU Langone but any experiences with doctors at Sloan Kettering, NY Presbyterian or elsewhere would be greatly appreciated.  Without knowing too much, I don't want to get ahead of things but it seems like there will be complicated decisions to make.  

Thank you all in advance.

Best,
Alex 

[LexieCat]

Hi there, and welcome.  

We aren't in a position to recommend specific doctors, but we can give you some thoughts about good questions to ask.  

How was her lung cancer diagnosed?  Has she had a biopsy?  A lot will depend on what kind of information the preliminary testing reveals.  Lung cancer CAN be complicated, but sometimes the decisions are not so complicated.  Especially for early -stage adenocarcinoma (most common type of non-small cell lung cancer), there are standard protocols for treatment.  

[afeldman43]

Thank you for your quick reply.  Is it a policy on the forum not to rec specific doctors (I can understand that)?  

She's only had images from a thoracic surgeon and is having a pet scan and brain scan Friday, then the biopsies.  I'm just trying to plan ahead.

[Steff]

Hi there,

As Lexie said, there are no doctor recommendations here, but I do have a suggestion for some pre-visit education for you and your family.  If you haven't checked out LUNGevity's main website, it's a great place to start educating yourself.  Specifically Lung Cancer 101  here.   This web page talks about everything from pre-diagnosis all the way up to monitoring after treatment ends.  I used this to educate myself when my mom went on immunotherapy - something we knew nothing about.  Another resource I used was LUNGevity's questionnaires found   here.   I took in the questionnaires to my mom's doctor appointments to make sure I was asking the right questions and not leaving anything out.  That helped ease the stress a bit and enabled me to focus on what the doctor was saying rather than my next question.

Lung cancer screening is tough on everyone involved. But the great thing is that you found LUNGevity before the ball got rolling to help you make sure your MIL is receiving the care that she should be.  As you and your family navigate this process, you will likely have lots of questions.  Feel free to ask-away...we are here for you!

Take Care,

Steff

[LexieCat]

Do you know what the findings were from the surgeon?  How did she wind up seeing the surgeon to begin with?

Yeah, we don't recommend specific doctors, but the hospitals you mentioned are well respected.  Many cancers are not especially complicated to deal with.  Before you expend a lot of energy on researching doctors, it would probably be best to have more specific information.

[afeldman43]

Thank you both.  My MIL reported a chronic cough at her annual physical and had an x-ray that showed a shadow.  That was followed up with a catscan showing a tumor and 2 nearby lymph nodes that appear enlarged.  The thoracic surgeon explained the results of the catscan (he's the head of the NYU lung cancer center).  She's having a pet scan and brain scan to see if the cancer has spread and then a biopsy to determine the kind of cancer.  Should have results by middle of next week (pet scan and brain scan by Monday, biopsies hopefully by mid-week).  

[LexieCat]

OK, good, things are moving along quickly.  Do you know the size of the suspected tumor?  Without a biopsy, I don't think it's possible to say something on a CT scan is definitely cancer.  Sometimes they can confidently say it's PROBABLY cancer, but without the biopsy I don't think there's any way to know for sure.  Keep us posted.  

[afeldman43]

Hi, so the good news is the PET scan and brain MRI didn't show any additional evidence of cancer, a HUGE relief.  She's having an EBUS biopsy of lymph nodes that appear to be activated tomorrow (a little slower than I expected) and she's supposed to have the results - is it cancer, what kind, mutation/genetic/indicators, in 5-10 days, then meet with an oncologist. 

The doctors seem to think that even though the lymph nodes are in the same area of the tumor that the right course of action will be chemo and radiation, not surgery.  Any reason why? My mother in law is 71 and otherwise healthy (was not a tobacco smoker, a little overweight but not a lot) - do they have different recs if you're over 70?  I know the oncologist will give recommended treatments and explain, but want to be armed and ready.

 

[LexieCat]

It might have to do with the size/location of the tumor.  Not all can be removed safely with surgery.  In those cases, chemo and radiation can be very effective.

[BridgetO]

In response to your question about treatment depending on age: I was 71 when I had a lobectomy. I didn't have any suspicious lymph nodes, only one nodule.My lung capacity was good,  I didn't have any other serious health issues and I was reasonably active, but not athletic.   My understanding is that whether a person is a candidate for surgery depends on size and location of tumor and nodes, etc., and also on the persons general health, heart function, lung capacity and so forth. iI shouldn't be based on age.  

[afeldman43]

So, the diagnosis is Stage 3A non-small cell adinocarcinoma (N2).  The recommended treatment is chemo (3x) and radiation for 6 weeks, then a year of immunotherapy.  The quick marker tests showed she doesnt have the ALK or EGFR mutations but does have high PDL-1.  The more comprehensive genetic test / biomarkers won't have results in for about a month.  In the meantime, radiation and chemo is recommended to start a week from Monday.   Pardon any misstated terms!  He suggested that others may recommend surgery after chemo/radiation but that he didn't think the outcomes are improved and that given her high PDL1  immunotherapy after chemo/radiation was the best course.

In the short term, the question is whether to get a second opinion from a good place.  I think our oncologist is very good and I don't know how we can judge whether or not to do surgery.  

Otherwise, my mother in law is a wreck and so we're doing our best to get her signed up for counseling, nutrition, etc.  Trying to be positive for her.

 

[Laurel]

I can understand how your MIL feels. I was 71 when diagnosed last November. I have had surgery, chemo and just finished radiation. If she has some questions, you might teach her how to use this site....starting with entering a new topic with her question. People here are so positive and supportive. She can feel more in charge and make connections.

[Robert Macaulay]

Oncology drugs are improving at a rate never before seen, especially in immunotherapy and combination therapies.

[Kleo]

For me...I was initially staged at 3B....then moved to 3A......they considered resection but didn't want to do surgery so long as my affected lymphnode was still active/ cancerous. I am 52. So I think likely the doc isn't considering age so much as just the best option for her overall at this point. I was initially told that at this stage they don't usually do surgery, but they had me consult with the surgeon just in case he thought he could get it. The treatment schedule they've given for MIL is pretty much the standard for stage 3. I did a similar treatment plan and am now starting the immunotherapy.

If MIL isn't comfortable with the plan though she should certainly get another opinion. Anything that helps for her peace of mind! 

 

 

 

 

[afeldman43]

Thank you. I don't think we have much in a way to judge whether or not the plan is better than another - we've gotten great references for our oncologist and no literature suggests that his recommendation isn't right.  We're working on getting a second opinion(s) but planning on moving forward with radiation and chemo therapy on 11/5.  It feels like we've already waited so long to get started though it's really been a month since first indications.  

Good luck with your treatment!