Second opinion??

[Shella677]

We are still waiting on biomarker results but my dr asked if I was interested in a second opinion, because once we start treatment I can’t enter a trial I guess?? I said yes and will be visiting University of VA once all my markers come back.  Is a clinical trial the way to go if there is one out there?  Everyone in the medical field I have talked to says yes and I don’t know much about it at this point to feel comfortable.  I hate that I may be delaying my treatment getting the second opinion , but if it’s worth it.... I’m torn.  I’m stage  IV nsclc. 

[LexieCat]

I'd definitely go for the second opinion. I don't think the delay involved will affect anything.

Find out what trial(s) might be available. Find out what's involved. Find out whether they think you're a good candidate and why. Here's a list of considerations and questions you might want to ask: https://www.cancer.gov/about-cancer/treatment/clinical-trials/questions

[Rower Michelle]

A second opinion actually saved my life.  Initially there was limited biomarker testing done for only the most "common" mutations.  All of the typical tests turned up with nothing, until I received a second opinion, a comprehensive biomarker panel was completed where it was discovered I did actually have a targetable mutation.   Second opinions are really not a good description. I think of it along the lines of an expert consultation.  With all the scientific advances in lung cancer, it's almost impossible for a general medical oncologist to keep track of the emerging therapies.   In the event I have any clinical changes, my doctor has already identified who he wants me to consult with for the treatment plan development.   We all understand the urgency to start treatment, however, finding the best treatment plan through experts is the most efficient path forward.   Some of my friends even obtained a third opinion... even though it took a few weeks, they received the best care and years later continue to be doing very well. 

[islandgirls]

Boyfriend is getting a second opinion now, too. Thankfully!

He has been having knee pain, even before he was diagnosed two months ago, which was mentioned at initial visits in the hospital. His oncologist (in my opinion) has been brushing this off and told him to go to his family doc for it... so he got an MRI (finally) last week. Torn meniscus, Baker’s Cyst forming AND multiple round cystic lesions on his tibia and femur.

Now. I am not an oncologist, but am I the only one to suspect bone mets? He already had brain mets... so this was the straw that broke me and I urged Boyfriend to get a second opinion. We shall see, as his scans for follow-up are next week. The second opinion is two days after the scan.

Oncologist also has blown off Boyfriend’s sleeping issues. Some due to knee pain and some just insomnia probably from the dexamethasone and the diagnosis! Says he only prescribes Ambien so otherwise Boyfriend can consult with family doc... SLEEP IS ESSENTIAL TO HEALING!!

So a bit frustrated, yet after getting that second opinion appointment on the calendar, I have restored HOPE! 💜

 

[TJM]

My oncologist is similar. I had several issues which I assumed were connected to treatment which I brought up several times. Finally, I think both of us got annoyed. I told him I thought he was my captain and all my issues should flow thru him (atleast for a couple years..right?). He basically told me..no, that's not how it works and to go thru my primary for "new" issues.

Now, this makes no sense to me at all, but I followed "orders" and went thru my NP. Probably saved my life because after several starts/stops we figured out I had had a PE and was put on blood thinners. Now I'm also on beta blockers...

They may have told me early on how it was suppose to work and I forgot, but I dont think so.

Now I am my own Captain (a demotion, as I considered my self the commader..😎). Its fine with me I guess.

Peace

Tom

PS....I am guessing the onc is assuming he would have seen the Mets on a scan? But a second opinion is the way to go.

[LexieCat]

If it's any consolation, I've been having all kinds of joint issues, which basically appear to be arthritis. I'm now seeing a physical therapist. I DO have at least one bone met, identified at the time of my original diagnosis, on my sacrum. It's almost completely gone as a result of treatment, though.

A second opinion never hurts, but I'd be surprised if those turned out to be mets. I don't think I've ever heard of bone mets from lung cancer in the knee area. 

Has b/f talked to palliative care about sleep issue? Wouldn't hurt....

[Judy M2]

Yup, palliative care would be helpful here, both for knee pain and sleep issues. I have taken lorazepam for sleep (included in the original "package" of prescriptions from my oncologist). Best of luck with the second opinion. 

[AngelL]

I was diagnosed 7/31/2020 with Stage IV NSCLC with brain mets.  We live in a small town so a general oncologist here. My husband wanted to get treatment in Atlana, much bigger hospital, better doctors but 2 hours away. I argued because Im still working and had to consider my leave time at work. I carry our health insurance so....

My husband is an IT guy so he has researched constantly ( I dont so much because I get anxiety) to make sure he knows the latest treatment options, etc. He pretty much begged the oncologist to do biomarker testing because my husband said the targeted therapies work better if you havent had chemo. I felt like the oncologist got annoyed with his questions at times. They claimed there wasnt enough tissue in my original biopsy? for the testing and could only do the blood biomarker test which showed a very small percentage or no markers at all. My husband asked them to redo the test because he read its best to do the blood biopsy several times. My local oncologist never agreed. Things felt so scary and urgent I started chemo immedately. Im about to get round 9 of chemo today. 

 I'm doing brain radiation at Emory in Atlanta.  All of my brain mets went away with 1st round of raditaion but I had 12 more 6 months later which meant another round of radiation. They have set me up with a specialist there saying my immunotherapy isnt working well for my brain.  The specialist I see there suggested the targeted therapies are still an option for me even after chemo? They also said there are many more options and new break throughs in science monthly. I will get a Pet scan and possibly another biopsy at the end of April and go from there. 

 i wold strongly suggest the 2nd opinion even if  youve already started the standard treatment chemo. My husband keeps mentioning clinical trials but I thought that was last option stuff? But as I said before I've avoided research and he has been deemed a Deputy Lung Cancer Specialist by our local doctors because of his extensive research on this. 

I couldnt tell if my Oncologist was being sarcastic, I mentioned my husbands agressive questioning of treatment suggestions haha, though because of these dang masks! 

[Judy M2]

Angel, I was diagnosed with Stage IIIB EGFR+ NSCLC on October 2019. Had 30x radiation and 6x carboplatin and taxol, which ended on 1/15/20. In March 2020 I started on the targeted therapy Tagrisso. All of the treatments have worked to date, and my next scan is at the end of this month. I have minimal side effects from Tagrisso. So I agree that biomarker testing is the best way to go. I understand that targeted therapy is now standard first-line treatment for Stage IV disease with targetable mutations, along with radiation to zap any mets. If there is progression or toxicity on Tagrisso (or its first-generation predecessor drugs), they do add or alter treatments, including chemo. I hope you can get your answers and biomarker results.

[TJM]

Bless your husband.....especially if you are a hands of, wait and see, kind of person.

Dude loves you.

Peace

Tom

[Qing]

On 4/1/2021 at 10:46 AM, Shella677 said:

We are still waiting on biomarker results but my dr asked if I was interested in a second opinion, because once we start treatment I can’t enter a trial I guess?? I said yes and will be visiting University of VA once all my markers come back.  Is a clinical trial the way to go if there is one out there?  Everyone in the medical field I have talked to says yes and I don’t know much about it at this point to feel comfortable.  I hate that I may be delaying my treatment getting the second opinion , but if it’s worth it.... I’m torn.  I’m stage  IV nsclc. 

I got a few second opinions for my mom's diagnosis from several hospitals in US. The main diagnosis came back roughly, roughly agree with each other, but the treatment suggestions differs a lot. My mom had blood test with 8 items of tumor marker tests. Is the biomarker you mentioned from blood test or actual tissue sample? I'm also educating myself on the type of samples best for treatment determination, and clinical trials.

[Shella677]

Hi Qing,

 There is quite the saga to my biomarker finding. I had a needle biopsy done and sent away to Caris labs. Came back positive for PDL1. They said they ran out of tissue for the mutations , dr sent them more. In the meantime dr said let’s send away blood as a back up, blood sample sent to Foundation One labs. Caris came back neg for EGFR and alk , inconclusive for ROS1.  They magically found 5 more slides of my biopsy and was going to test them specifically for ROS1. Blood work came back today positive for BRAF V600 which is a targetable rare mutation and Is what my dr is going to treat me for. If you were me would you feel confident will all of the above?? My second opinion dr has been included and is in agreeance,

[Dona]

On 4/6/2021 at 1:19 PM, islandgirls said:

Boyfriend is getting a second opinion now, too. Thankfully!

He has been having knee pain, even before he was diagnosed two months ago, which was mentioned at initial visits in the hospital. His oncologist (in my opinion) has been brushing this off and told him to go to his family doc for it... so he got an MRI (finally) last week. Torn meniscus, Baker’s Cyst forming AND multiple round cystic lesions on his tibia and femur.

Now. I am not an oncologist, but am I the only one to suspect bone mets? He already had brain mets... so this was the straw that broke me and I urged Boyfriend to get a second opinion. We shall see, as his scans for follow-up are next week. The second opinion is two days after the scan.

Oncologist also has blown off Boyfriend’s sleeping issues. Some due to knee pain and some just insomnia probably from the dexamethasone and the diagnosis! Says he only prescribes Ambien so otherwise Boyfriend can consult with family doc... SLEEP IS ESSENTIAL TO HEALING!!

So a bit frustrated, yet after getting that second opinion appointment on the calendar, I have restored HOPE! 💜

 

I had a similiar almost lackadaisical feedback/experience  from the gynecological oncologist who first diagnosed me over 20 years ago.

I fired him and transferred my care to a premier teaching hospital. If you feel your bf is not getting the full attention of his oncologist, find one that will provide the care you expect. Good luck to you and hugs for your bf.