Newbie

[Candi]

Thank you Judy I sure hope so. I’ve just begun diving into information but so far what I read, when it spreads from lungs to brain it’s pretty much game over. That will be tough news to hear if it’s true.

[suecris]

From what I've been reading the past few weeks, it's not "game over" until you decide it is. They almost always have something to throw at it.

All my life I've admired people who can continue to hang in there even when things look rough. There may be tailored therapies suited to the DNA of your tumor that will bite it back without making you too sick. That's a thing, now. 

[Candi]

That is info I hadn’t yet found, thank you suecris. I am definitely not saying game over, I was just reading on a cancer website and their prognosis for treatment when spread to the brain is pretty grim. I apologize for being gullible to all that I read, I do usually take things at face value but a quitter I’m not. 😊

[Judy M.]

Candi

It is considered stage IV when it has spread to distant sites like the brain, but it certainly isn't game over. I was stage IV when I was diagnosed a year and 7 months ago. I'm still here and still enjoying being here. And there are many others considered stage IV who have been here longer than I have. But I know how you feel. The first time I talked to my Oncologist I told him I heard him saying, "You're dead." But I wasn't and I'm not. Our fearless leader Tom is a little busy right now, but he would tell you he was once told he had months to live and that was well over ten years ago. We'll each go home when the Lord gets ready to come and get us. Until then I want to stay positive (this group helps with that), enjoy every day, and keep fighting. You'll do well. 

Judy M

[BridgetO]

Hang in there Candi,  I bet you'll find that there's more than one availble treatment. And the reason Tom is "a little busy" is that he and his wife are on a cruise of the Baltic. He's really an inspriation for long-term survival. I hope you will be, too.

Bridget

[Candi]

Thank you Bridget and Judy, I look forward to sharing “good news” with everyone and the privilege to meet Tom.

[Candi]

So this afternoon is my first oncologist appointment. Are there things I can listen for or observe that may give me an indication as to whether he’s a good oncologist or not?

[LexieCat]

Well, my own oncologist hasn't really been put to the test, so to speak.  Our encounters have been brief, and other than the first visit, where he spelled out my options to have, or not have, chemo after my surgery, they have mostly been limited to a quick review of my scan results and maybe answering a few questions.  He hasn't been involved in any of my active treatment.  He's a pleasant enough young guy, and seems to know what he's talking about.  Most important, from my perspective, is that he has a whole cancer center full of experts to back him up so he's not working in a vacuum.

Here's an article that might help: https://health.usnews.com/health-care/patient-advice/articles/2018-01-23/how-to-find-a-top-oncologist

And, as with any doctor, I think feeling like you are listened to, your concerns taken seriously, and your questions answered in a way you can understand would be important.  You don't want to feel rushed at your visits.

Probably others here who have had drug therapy can provide some additional pointers.

[Candi]

Good morning Everyone,

Had my first appointment with my oncologist yesterday, wasn’t great but wasn’t horrible. His first concern is the spots now on my brain, he says we go after those first and try to get them under control. He concerned also at how quickly the cancer has spread, but kinda said there is only so much that can be done and we will just have to try and get ahead of it. He said at this moment, he may give me a year, mainly because once metastasized to the brain, it can be hard to beat it. He has to biopsy the mass once more to determine the genetic’s of the cancer which will tell him what form of treatment may work on the remaining cancer, this will take about 2 & 1/2 weeks, I expressed that I hope I have that long given how quickly the cancer has spread. I shared all of this info with my one and only son, we cried. I’m not afraid to die but I know that feeling of losing a parent, my mom died when she was 53 also and it just seemed so soon for me, I still had so much that I wanted to share and experience with her. One thing I do believe and I think Judy shared it also, cancer will not determine when I leave this earth, God’s Word says that is His decision so if at the end this is it, that is what was intended by God anyway, not cancer. I hope everyone has a great day....thank you for all of your support and guidance.....stay strong!!

[BridgetO]

Quote

 

Hi Candi. 

It sounds like you have a plan, which is good.   Are you having radiation to the brain and if so, when do you start?  Here's a video of something written by Steven Jay Gould about statistics and predictions of life expectancy. https://www.youtube.com/watch?v=cH6XuiOBbkcHe lived 20 years longer than predicted.  His scientific  perspective comes to the same conclusion as your religious one. No one knows how long they will live and doctors don't know either. (If somebody has already sent you this article or video, I apologize for the repetition). 

Hang in there.

Bridget O

 

[Candi]

Goodmorning Bridget,

Radiation is my understanding however he did not specify a time, just soon. Thank you so much for the video, I can wait to watch it! Now more than ever do I want to learn and become involved wherever I can. Mr. Gould’s story sounds inspirational, I am eager to learn more about that also. Today is a good day and I am feeling a greater measure of confidence.  Thank you for sharing Bridget❤️

[LexieCat]

I second what Bridget said.  There are plenty of people on this forum 10-plus years past their "expiration date."  It sounds a bit like your doc is one of those prone to giving the "worst-case scenario."  Some people want that.  Personally, I prefer a doctor who will be honest but also hopeful in terms of laying out the treatment plan, letting me know what would be Plan B if Plan A doesn't work, and assuring me that s/he is up to the challenge of helping me beat cancer.  I'm not suggesting you don't have a great oncologist.  Just pointing out that different doctors have different personal styles, and when you have options it's best to try to find someone who makes you feel like a survivor.

Second opinions are always an option, and common when dealing with something like lung cancer.

 

[Candi]

The news of outlasting expiration dates sounds good to me  My oncologist was actually very positive, I was the one that began the conversation with him by asking if he felt there was any hope so he went over his thoughts regarding that very thoroughly, but then went on to share the positives and everything he was willing and planning to do to get this under control so I could get on with life. I actually really liked him.

[LexieCat]

OK, then that's great!  I'd suggest YOU not focus on worst-case scenarios, then.  I think it's good to know what they are, but more helpful to assume you aren't on the dire end of the scale, you know?  Right now there is no reason to think you won't respond beautifully to treatment and become one of the long-term folks.  

Here's a fairly recent article about treatment options for brain mets.  I don't pretend to understand all of it, but it might suggest some questions for your oncologist.  https://esmoopen.bmj.com/content/3/1/e000262

[Candi]

Thank you for the link Lexicat, I believe I will take this evening and watch all that all of you have shared with me. I promise not to focus on the negative, I’ve actually been called nauseatingly positive lol. Working as a pharmacy technician for 22 years, we have had more than 1 doctor call in an ex and admit, “I know this medication won’t do any good but for the sake of the patient I have to try something.” And that was kind of my test for him to find out just how negative he was looking at this and if his heart was going to be in the treatments to actually try to help me beat this, otherwise I was gonna find someone else. He seems very optimistic though considering.

[Candi]

Hello Everyone,

So I had the appointment with the oncologist on Friday and he stressed the first concern was to get an order out to radiology to schedule treatment on the spots on my brain. I called this morning and he dropped the ball and didn’t send the request. Another young guy in the oncologist office called to let me know the process has been started but it will take some time. I told him with all due respect the cancer has travelled from the lower lobe of my lung, into both lungs, my neck and brain in about 3 weeks, can he assure me that I safely have another 2-3 weeks to wait for their processing before receiving treatments? He said absolutely not, my health was more important than their procedures and he would get right on it. Is human life that unimportant to them??

[LexieCat]

I understand your frustration, but I doubt it's a matter of their just taking their time to "process," in the sense of their being lackadaisical about it.  Medical resources have to be scheduled to accommodate many patients, doctors, and available equipment.  From what I understand, commencing radiation within a matter of weeks isn't that unusual.  I think there are often planning appointments that come first, as well, to ensure the radiation is correctly focused.

Did the doctor say what type of radiation you would be receiving?  Was there any discussion of other options, such as surgery?  Depending on where the mets are located, I think that is sometimes an option as well.

Is your doctor referring you to a radiation oncologist?

[LexieCat]

Just one other thing.  You said, "the cancer has travelled from the lower lobe of my lung, into both lungs, my neck and brain in about 3 weeks."  You don't know that.  The one nodule was spotted first, and then the PET/CT (which provides more detailed information) revealed the lymph node and brain involvement--those would not have been evident from the initial CT scan--the PET/CT is used specifically for that reason: to detect any other cancer you can't see on an initial CT scan.  So there's no reason to believe it actually traveled/spread as fast as you're assuming it did--it was probably already like this when the first nodule was discovered.  

Just trying to provide some additional perspective, here.  

[Candi]

Hi LexieCat,

That was my understanding of the progression from the X-ray to CT to PET scan also but that the cancer traveling to where it is in 3 weeks were the oncologists words? I did ask how it could happen so fast and he looked at the screen and said “this is an aggressive cancer.”  He also said that it was imperative to begin the laser treatments (which he did call by name and it’s in my file but not right here with me) on the spots on my brain as the survival rate was already relatively low. He said I could expect a phone call from radiology in a couple of days. I called the office this morning to find out if they had any information about the treatments and the nurse said “well, he placed it on high priority but never sent the referral, he must have forgotten?” I’m sure there will be a ton that I don’t understand, I’m just thankful to be getting treatment tomorrow. When I asked him if I was safe to wait for future appointments he said he really didn’t know, it wasn’t a good situation.

[LexieCat]

I suppose any cancer that goes to the brain could be considered "aggressive" when the primary tumor isn't that large.  I don't doubt that he wants to get it started quickly, I just don't think it's possible to conclude with any certainty how long it has been since the primary cancer metastasized.  

I'm a little confused by your reference to "laser treatments"--that's a different thing from radiation.

[Candi]

Hi LexieCat,

i am receiving radiation but it’s through External beam radiation ( the oncologist calls it laser beams cuz it’s targeted I guess?) I begin tomorrow for 2 weeks, they are focusing right now on the mass that has moved to the middle of my chest. It’s compromising my breathing and threatening choking out the veins and arteries to my heart. He tells me all of this is in hopes of buying me more time but they won’t be “treating” the cancer per se because it’s beyond the point they can help.

[Candi]

My 45 minute drive to my appointment yesterday wiped me out for the entire day, I hope I have the strength to go in at 7 a.m. for 2 weeks??!!

[LexieCat]

Has the oncologist gotten the results of testing for molecular markers?  It sounds odd that there are no plans to "treat" the cancer.  

I think if I were you I'd be looking into eligibility for clinical trials or, at least, getting a second opinion.  It may well be that they can't cure the cancer, but for some people lung cancer can be treated almost as a chronic disease, buying not just a little more time, but potentially decades.  

When Tom gets back from his cruise I'm sure he will be able to discuss this with you much more effectively than I can--he's like a walking Wikipedia of knowledge of treatments, studies, etc.  And he's personally had just about every complication and treatment type there is--and he's been hanging around for a VERY long time at this point.  

[BridgetO]

Hi Candi,

You might contact the American Cancer Society. They have some programs to help people get to cancer treatment appointments. You could see if there's one in your area.  The link is:

https://www.cancer.org/treatment/support-programs-and-services/patient-transportation.html

Att the best,

Bridget 

[Candi]

Hello All,

Yes it’s been since July since I have posted. Outside of 1 week at the end of July, I have been in the hospital with complications and was just released September 30th. I have to say it feels so good to be home but it comes with challenges. The pneumonia that sent me to the hospital to begin with returned and I was admitted July 30th. With that, the oncology team said I had scarring in my lungs that more than likely had been there possibly a few years, the source of scarring is not known though. I’ve been on oxygen, antibiotics and steroids all this while with a hope some of the damage could be healed but not much has changed. I did have a blood test last Friday that shows sudden elevated liver enzymes, my stomach is pretty swollen so off to a CT scan tomorrow. My oncologist is refraining from additional chemo right now feeling as though my lungs need a break, I hope he’s right. This has been the wildest life ride to date for me, I’m really not even sure what to say or think.....the days just go by with no change, so far not getting stronger and not breathing any better. I want to be positive through this but every part of me from my swollen stomach to my shaky muscles constantly reminds me of what I’m dealing with. I hope everyone else is doing well, I’ve been praying for you.

Candi