Dr Unsure of Cancer Type

[Dona]

Hi everyone

I posted last July about being diagnosed with lung cancer.

After bronchoscopy, the bedside diagnosis was SCLC

Then a few days later, after reviewing more slide stains it was changed to neuroendocrine carcinoma  

Then yet a few more days later, it became NSCLC.

I have some of the most accomplished MDs looking over my case, and not one of them can definitively tell me if its localized lung cancer or uterine met from 21 years ago, BUT my treatment plan will be for localized lung cancer. 

Have any of you folks heard of being dx'd and rediagnosed for 3 different cancer types?  Am I asking the right questions? 

Thx

Dona

 

[LexieCat]

Wow--holy presto-changeo, Batman. I've heard of a few other people with ambiguous diagnoses, but you're right up there, I think. I HOPE it's nsclc--it's just more treatable. So what treatment is being proposed? Has a sample of the tumor been checked for biomarkers? (You might have told us, but I forget.)

[Dona]

Lexie

Treatment starts next week and consists of chemo (carboplatin and ?) 1xweek and radiation 5xweek for 6 weeks.

Went in Thurs for radiation mapping and onco said altho they cant say for sure if it's mullerian or original lung, they're treating it as lung and she would treat the same. 

Both tissue and blood biomarkers done and no FDA therapies showed up, but clinical trials yes. 

Radiation onco said durvalumab would be administered after chemo/radiation. 

I am in info overload,  as with each diagnosis I've devoured all the info I can and dealt with the stress, then the game changes. 

Ive got a 5.7cm tumor and a secondary nodule in Rlung, NO lymph node involvement at all. All of these oddball occurences led me to ask are they.sure it's cancer and not a freak infection? All I got was it's a cancer just cannot pinpoint origin.  I am around chickens and thot maybe breathing in poop dust or my exposure to wildfire smoke when I went on fire assignments in the past, and asked if maybe that explained the tumor. All I got was not enough studies are out there to make that connection. 

I was just curious if others heard of such a thing as I want to make sure I am being treated correctly.

The cancer ctr I am going to is rated #7 in California and is a comprehensive center, but starting to doubt them a bit.  Remember the TV show House? Where they went thru multiple dxs before figuring out the disease? That's me right now.

Any and all thots are welcomed!

[LexieCat]

I'd guess the other drug is Alimta (Pemetrexed)? That's a common pairing.

It sounds like your cells don't have a typical, readily identifiable appearance in terms of the type of cancer, but I've not heard of a biopsy resulting in a misdiagnosis of cancer when it's actually an infection. 

Didn't you say the sample had been sent out to one or more other cancer centers? If not, I think I'd seek a second opinion elsewhere. But if they already sent it elsewhere, the treatment they are proposing is standard first-line therapy for nsclc. And you'll know in a matter of weeks if you're responding.

Sorry, this has to be frustrating.

 

 

[TJM]

12 hours ago, Dona said:

Lexie

Treatment starts next week and consists of chemo (carboplatin and ?) 1xweek and radiation 5xweek for 6 weeks.

Went in Thurs for radiation mapping and onco said altho they cant say for sure if it's mullerian or original lung, they're treating it as lung and she would treat the same. 

Both tissue and blood biomarkers done and no FDA therapies showed up, but clinical trials yes. 

Radiation onco said durvalumab would be administered after chemo/radiation. 

I am in info overload,  as with each diagnosis I've devoured all the info I can and dealt with the stress, then the game changes. 

Ive got a 5.7cm tumor and a secondary nodule in Rlung, NO lymph node involvement at all. All of these oddball occurences led me to ask are they.sure it's cancer and not a freak infection? All I got was it's a cancer just cannot pinpoint origin.  I am around chickens and thot maybe breathing in poop dust or my exposure to wildfire smoke when I went on fire assignments in the past, and asked if maybe that explained the tumor. All I got was not enough studies are out there to make that connection. 

I was just curious if others heard of such a thing as I want to make sure I am being treated correctly.

The cancer ctr I am going to is rated #7 in California and is a comprehensive center, but starting to doubt them a bit.  Remember the TV show House? Where they went thru multiple dxs before figuring out the disease? That's me right now.

Any and all thots are welcomed!

I also went through this dance. It is nerve wracking. In the end the treatment option would have been the same regardless. So far so good for me. Have a scan today so the stress level is up. Keep the faith

Peace

Tom

[Tom Galli]

Dona,

I agree with Lexie. It sounds like your treatment is "first line" standard of care (the first and best treatment offered) for NSCLC. This resource might help you understand the complicated treatment vocabulary.

You are asking the right questions. While you mention NSCLC, you don't tell us the type. Do you have adenocarcinoma, squamous cell or large cell?

Stay the course.

Tom

[Dona]

6 hours ago, TJM said:

I also went through this dance. It is nerve wracking. In the end the treatment option would have been the same regardless. So far so good for me. Have a scan today so the stress level is up. Keep the faith

Peace

Tom

Thx Tom, comforting to know I'm not alone in multiple dxs.

 It'll make next week's treatment a bit easier on my mental health!

 

[Dona]

4 hours ago, Tom Galli said:

Dona,

I agree with Lexie. It sounds like your treatment is "first line" standard of care (the first and best treatment offered) for NSCLC. This resource might help you understand the complicated treatment vocabulary.

You are asking the right questions. While you mention NSCLC, you don't tell us the type. Do you have adenocarcinoma, squamous cell or large cell?

Stay the course.

Tom

Hi Tom

Adenocarcinoma.  See, now that you've asked that, I'm going to go research the types.  Thx so much.

[Dona]

Lexie/Tom

Here are the detected biomarkers 

Currently researching all.

 

[LexieCat]

Pretty sure none of those is targetable. I have a few random mutations, but I always say I have none--because I have none that have any significance as far as my treatment goes. For instance, I have TP53, which is a mutation common to many cancers. But there's nothing to be done for it as of now, so I just ignore it.

[Dona]

Yea, nothing targetable, but wasn't really expecting it, since they're not sure of the cancer origin.

Talked to my onco today and confirmed chemo protocol will be low-dose Taxol/Carboplatin. 

Pemetrexed not being considered due to histology (again, lung or uterine?)

So I fully expect my case to be held up as once that baffled some of the most accomplished oncologists, pathologists, researchers, and professors, lol.

Dona

[LexieCat]

Hey, maybe you'll be a star of some medical journal--as a success story.  

I'm kinda surprised at Taxol... maybe because they aren't positive of type. I don't often hear that mentioned for first-line treatment for nsclc. Hopefully it does the job. I know one common side effect with Taxol is neuropathy. Hopefully with a low dose it won't bother you.

[Dona]

1 hour ago, LexieCat said:

Hey, maybe you'll be a star of some medical journal--as a success story.  

I'm kinda surprised at Taxol... maybe because they aren't positive of type. I don't often hear that mentioned for first-line treatment for nsclc. Hopefully it does the job. I know one common side effect with Taxol is neuropathy. Hopefully with a low dose it won't bother you.

Lexie, yes Taxol is being administered bc they are unsure if origin is lung or past uterine. 

I had Taxol in 2000 and I did experience tingling in fingers and feet for a short time. With this upcoming low dose protocol, I dont expect to experience neuropathy, but we'll see.

 

 

 

[TJM]

Dona

I somehow missed the NET diagnosis (one of three!). Just an FYI. I have been diagnosed with Large cell NET. If your docs eventually find that this is the type of cancer you have please keep me in mind as there are so few of us (none on the forum that I am aware of).

I find it funny that Large cell is called NSCLC yet it is often treated as tho it is small cell. Messes with my Engineers head! I just got my scan yesterday and will be waiting on results on pins and needles as always.

I really hope your doctors figure this out. It must be maddening for you. You are in my thoughts.

Peace

Tom

[Dona]

9 hours ago, TJM said:

Dona

I somehow missed the NET diagnosis (one of three!). Just an FYI. I have been diagnosed with Large cell NET. If your docs eventually find that this is the type of cancer you have please keep me in mind as there are so few of us (none on the forum that I am aware of).

I find it funny that Large cell is called NSCLC yet it is often treated as tho it is small cell. Messes with my Engineers head! I just got my scan yesterday and will be waiting on results on pins and needles as always.

I really hope your doctors figure this out. It must be maddening for you. You are in my thoughts.

Peace

Tom

Tom, I didnt realize your dx was large cell Net. Yes, of course if my Drs somehow conclude they're treating NET, I will share with you. It is maddening to me - I'm not sure why it took 3 tries for a final dx. Kinda makes me wonder how sure they are on the NSCLC. They keep telling me it's based on the histology but I need to press them a bit more on the differences. They are a comprehensive cancer center with alot of onco 'rockstars' so want to put my faith in them, but at the same time, I'm  a bit leery.

Dona

[Judy M2]

I had 6x carbo/taxol as first-line treatment (with radiation) for my adenocarcinoma. I don't think it's all that unusual. But I'm still confused as to Dona's diagnosis and will just lurk about on this discussion. 

[Dona]

Hi Judy

Believe me, I am also confused as to why some of the most accomplished oncologists and pathologists in the country/world can't tell me the origin. 

I'm told the first-line treatment I'm (finally) receiving would be used whether it was a mullerian met or localized LC, so will try to accept that.  

I plan on posting weekly updates of my treatment, with protocols, side effects etc to help those recently dx'd get a general idea of what to expect,  and to reach out to the 'LC veterans ' who can answer questions as well. 

Dona

 

 

[TJM]

Believe it or not...but cancer treatment and diagnosis is not really a science. It's much more a congregation of trials and statistics. Why having a rare form of cancer is so challenging for all.

I've asked several times what my second line treatment would be if a recurrence happens. I get blank stares. But I've already decided what I would want it to be. Hopefully I won't have to cross that bridge.

Peace

Tom