Bad News....Dammit

[TJM]

Well. Spent all day at Kaiser. Lucky for me my quarterly Cat scan was scheduled for today but since I was feeling like crap my NP had me go to urgent care.

The Doc there had them expedite my Cat scan read out after we went over all the other stuff.  Bottom line is the cancer is back and surprisingly big at 2.8x3.6 cm. No oncologist in the building so now I get to wait.

As I've mentioned before, I have no clue what the second line treatment is but sure dont want to wait to long to find out if its growing that fast.

I feel surprisingly calm. My body has been telling me something was wrong for a month.

Will keep you updated. For those who may not know my story I have Large Cell NSCLC and was staged at IIIA. Rare cancer.

Peace

Tom

[LexieCat]

Oh, man, Tom,

I'm sure sorry. I remember all too well how I felt when my latest cancer was discovered--it feels like a punch in the gut. 

I don't know much about large cell, but I do know lots of times with my kind of cancer (adenocarcinoma) it's worthwhile to have a new biopsy and biomarker workup. Sometimes the cancer has changed and will be responsive to a different type of treatment. 

When will your oncologist be available?

[MBinOregon]

Tom,

As I wait for upcoming PET this Friday (let's just say my 3 month CT yesterday was not good. Sigh.), I'm thinking of you and including you in my prayers.  

Virtual hugs,

MB

[GaryG]

Sorry to hear the bad news Tom. My question is how did they determine it was cancerous without a biopsy? In any event let's hope they get to the bottom of it quickly. Best of luck.

[LouT]

Tom,

Sorry to hear this news.  This disease is sure one to make sure we never really get to "rest on our laurels" as it is always hiding in the bushes.  Please hold off deep thinking on this until you get to speak to the Oncologist.  They will likely need to do more testing and then you can better understand what the situation is and the approach to improve it.  Best of all luck my friend.  You are in my prayers.

Lou

[Rower Michelle]

Wow.  I’m really sorry to hear about this.  When it comes to second line treatment that’s when you might want to consider obtaining a second or maybe even a third opinion.   It’s also worth reaching out to the GO2Foundation’s Lung Match Program to determine if there are promising clinical trials.  Time to go to the mattresses and fight.  Hang tight my friend.  

[SamGirl50]

Tom, you're in my prayers. 

[TJM]

Thanks all. I finally found some info on second line treatment so I at least know it exists.

This is a special place with special people. Funny thing is if you looked at me I look very healthy. Weird.

Cancer.net a great site. For future reference if someone else is unfortunate enough to have the same cancer.

Regarding diagnosis.....it is true that no biopsy has been done yet, but finding that large of a mass on the same side makes it pretty certain, but I suppose there is some chance it is not cancer.  Wish I could see an oncologist (dont care who) so I could get this train rolling.

Again...you all are great.

Peace

Tom

[TJM]

3 hours ago, MBinOregon said:

Tom,

As I wait for upcoming PET this Friday (let's just say my 3 month CT yesterday was not good. Sigh.), I'm thinking of you and including you in my prayers.  

Virtual hugs,

MB

Best of luck on the PET. Very sorry to hear about the CAT scan. I'm guessing I have a PET scan in my future....hopefully soon.

Peace

Tom

[Tom Galli]

Tom,

I wish, I hope, well you know! If I had a magic wand, I'd make an oncologist subject-matter-expert in large cell appear in your home this morning! Clearly, that is way beyond my powers.

All flavors of lung cancer are notorious about recurrence. My reading suggests small cell is the worst and right behind that, unfortunately, is large cell. I am a very experienced recurrence survivor, but I don't have a clue about making the experience palatable. All of us have to steel ourselves against the likelihood. Now for you likelihood is certain. 

Also certain is the stress and strain of re-engaging the beast. It doesn't get easier the second time around except in one aspect. You'll understand the treatment cycle in terms of side effect presentation. Put on your battle-rattle and lock and load.

Stay the course.

Tom

[LUNGevityKristin]

Tom, I'm so sorry to see this update.  Here is the link to the clinical trial finder if you are interested: https://lungevity.org/for-patients-caregivers/lung-cancer-101/treatment-options/clinical-trials

Thinking of you, please keep us updated on what the oncologist says.

[TJM]

Tom

Thank you. My battle armor is already on and I am ready to go. I just sent my primary NP a note that I would rather not wait till next Tuesday to get the ball rolling (my oncologist is on vacation) and that the next step is a PET scan or a biopsy.  I requested her help in getting that scheduled. My oncologist is not the only one in Kaiser. Probably won't work...but it shows that I am ready to.....Stay the course.

 

Kristin

I may ask for help in finding an oncologist on the west coast for a second opinion on treatment. Not sure if your contacts could help me.  I would pay him/her for a consult on treatment options.

I'm not ready to quit yet. Not even close.

Peace

Tom

[LUNGevityKristin]

Tom, reach out to the Lung Cancer HELPLine and let them know your situation.  https://lungevity.org/for-patients-caregivers/support-services/lung-cancer-helpline  

[catlady91]

I'm very sorry to hear this. A lot of people here have had recurrences and have bounced back. It sounds like such a blow and I dread this being the case with my mum, but there's been huge advances in treating lung cancer. What was your primary treatment? Did you have surgery since you were diagnosed at stage 3A? Have you been on any targeted treatment? I unfortunately don't know much about large cell lung cancer, but maybe there are targeted treatments for it? Have you tried immunotherapy?

[TJM]

Cat

I did have surgery to remove my right lower lobe followed by Chemo and then radiation.

Dont feel bad about not knowing much about Large Cell...it appears not many do.

Peace 

Tom

[catlady91]

I tried to look up more about large cell, but like with all subtypes of NSCLC, there isn't loads of information. Most sites seem to speak about NSCLC quite generally. I found that with my mum when I tried to find more information about her type; squamous cell. Most of the sites don't really go into much depth and the subtypes are generally dealt with the same way. They only differentiate between NSCLC and SCLC. 

Apparently about 10% of people with NSCLC have large cell. It's not a big percentage, but it's by no means very rare with NSCLC. 

I hope that you get the best treatment options. Hopefully you can try targeted therapy and immunotherapy if you haven't already. I hope that you have a good oncologist as well; it makes a difference. Even if they don't give you the options that you want, it always helps to get a second opinion. My mum was having problems with her immunotherapy consultant (he was awful and caused her so much anxiety!), but now she's switched and the new consultant is much better.

Praying for a good outcome for you! Keep fighting. There's always hope x

[BridgetO]

Hi Tom, I'm sorry to hear about your CT results. Ugh, what a dasappointment for you. I suggest you consider a second opinion and try to find an expert in large cell.  I have Kaiser also. (Oregpm/ SW Washington) When I had a rare and aggressive  stage 3 cervical cancer in 2011. I sought out an expert in rare gynecologic cancers at OHSU.  Kaiser wouldn't pay for the outside second opinion because they said I could get one in their system.  I decided to self-pay. OHSU got all my records and my biopsy slides from Kaiser and redid the pathology.  The OHSU doc was great-- she agreed there were no published studies on treatment of my odd cancer, but she has some clinical experience and made recommendations for chemo. I couldn't afford to do out of system treatment, but fortunately my Kaiser onc was willing to follow te opinion even though the treatment was not what she would recommend. And here  am today, NED!  

The cost of the consultation at OHSU was surprisinglng reasonable. They didn't even bill be for their  pathology report - that might have been their oversight, but I didn't call it to their attention! 

I also think you could get a phone or virtual consult at one of the big name cancer centers.

I wish you all the best,

Bridget O

[BridgetO]

MB-- I'm sorry to hear you had disappointing results on your CT. Best wishes and keep us posted.

Bridget O

[TJM]

Bridget Ohhhhh

Pretty sure you and I go to the same clinic. Heck, you could have been sitting next to me at some point. Small world.

Smart minds think alike. I also got a second from OHSU and also paid for it myself. Unfortunately no one at OHSU has much experience with large cell and he blessed the first line treatment proposed by Kaiser. It cost me less than a plumber who my wife had fix a toilet (I find that amusing).

Tom G gave me a referral for a Doc in Seattle and I know there is a Dr in San Fran that was recommended to me 6 months ago....just have to find it.

I have been considering switching from Kaiser but decided not to. It was a close call, but I have Cluster headaches and a really compliant neurologist that has been a god send so will stay with them.

I am fortunate that financially (within reason) I can afford many options.

I'm ready to go...but will have to wait till next week when my sleepy oncologist is back from vacation.

Peace

Tom

[BridgetO]

Yeah, you really need an expert! Too bad there isn't a local one. If the Seattle and SF docs don't work out, I wonder if Lungeivity has a resource to help find someone.

I'm staying with Kaiser, because I can't financially afford a lot of options. We have excellent coverage with a medicare supplement offered by my former employer. I do have to pay for it, but I still save a lot of money because we have so many things covered. Treatment for  my 3 cancers cost us very little. It would be nice to have more choices, but the cost would be prohibitive. I'm generally satisfied with my care but I've had to shop around in the system some. I fired ( or rather declined to see) one medical onc and would have fired one physician assistant if he had not "left the system " first

BTW, do you mind telling me who your oncologist at Kaiser is? If you don't want to say publically, you could PM me.  Thanks.

Hang in there!

Bridget O

[TJM]

Dr. Ellis. He is nice enough but we dont really click.

FWIW cost was also a factor in my deciding to stick with Kaiser. Zero hassles on billing is huge. As long as I can be my own advocate I'm not concerned.

Tom

[BridgetO]

Yep, the zero hassles on billing is a big plus. When i read some of the posts on here about insurance problems, I realize how big of a plus it is to not hav to go that. 

Bridget O