Symptoms of Brain Mets

[Kimfish48]

Hi, all you dear kind souls.

As many know, my mom just had a lobectomy for Stage 3a squamous cell lung cancer. She is due to start chemo next Friday, July 16. While talking to the oncologist, I emphasized the fact that nausea is her Achilles' Heel -- she gets nauseated from the heat, from crowds, from shopping, etc. He asked if anyone had pursued the reason for that and the answer was "no". So he's arranged to do that today. I thought of brain mets right away, but I wasn't worried because the nausea has been around for 10 or 15 years.

However, it has since occurred to me that in the last couple of years, she tends to get a bit more confused, fuzzy, and slurs her words -- especially as night time approaches. However, one nurse chalked that up to "Sundown Syndrome" and a possible gradual onset of Alzheimers or dementia -- something that makes sense to me. However, I just realized that maybe it's something more and I need to know how brain mets manifest themselves because she does live some distance away from me and I need to arrange to be there next week if she hears some bad news.

Does anyone have any perspective on these "brain mets"? Are they things that show up months later after the primary cancer? Do they illustrate any symptoms? Anything you could share with me would be more than I know now.

Many, many thanks,

Kim

[Joppette]

Hi Kim,

My Mom's LC was found after she had a Grand Mal Seizure from brain mets. Seizures are symptom. Headaches, lack of appetite, trouble with vision, falling down, saying words incorrectly, forgetting things, all symptoms of brain mets, or primary brain cancer.

My Dad and Sister both died from brain cancer. Dad was saying his words wrong, and lost his balance a lot. Sister had horrific headaches. My husband's Mom had brain mets from LC, and that is how we found out about her LC, because she kept falling a lot!

So I wish you the best with this. It's never good to think of mets as good, but brain mets can be treated with radiation therapy and it can help a lot. It did with my Mom.

Judy in MI

[Kimfish48]

As always, ladies, thank you. This is an amazing site. I asked Dr. West a similar question earlier and he wrote back quickly and as decisively as he could. As I said to him then, I'm not working right now -- primarily so I could go through these first crucial months with mom and the initial chemo. I'm also getting counselling for myself. But because I'm not working, I've only been able to make a small donation to the site. But Katie, please know that when I'm solvent again (and I'm fortunate enough to work in a relatively lucrative field), please know that I will be making a more significant donation. I don't know if you realize the difference you guys make in people's lives. It was a bad day today -- about 8 hours of sobbing because of the possibility of brain mets. Now...I'm not so sure because of the info I've learned from your site. I know nothing is definitive, but at least I have some perspective. I'm sure you ladies hear it often, but THANK YOU. THANK YOU. THANK YOU.

Kim

[HeatheraFucci]

My dad who was just diagnosed with Stage IV NSCLC has mets in 4 places in his brain and that dx came 2 weeks after initial dx.

Granted the only reason my father went to the doctors was because he had a baseball size mass on his shoulder that was paining him. Who knows how long he has had cancer.

[fillise]

Kim,

Welcome to the sadistic world of LC. You will now view everything through the lens of lung cancer. I was aparayzed with fear when mom has swelling in her abdomen, sure it was liver mets. Nope, just a side effect from radiation. Then when here vision blurred I was sure the cancer was in her brain. Nope, just the opthamalic migranes she has had for years.

If the nausea is something your mom was experiencing before the LC, most likely it is not from a brain met. And the description is consistend with Sundown Syndrome. It's always best to rule out what you are afraid of, but it isn't always the cancer causing problems.

Susan

ps--And we who live in LC word with you will appreciate that only cancer could make you treat an Alzhiemers Dx as good news..

[Kimfish48]

Thanks, guys:

Oh Susan, you make me laugh!!! That's exactly what I was thinking yesterday -- I was praying that it was dementia and a slow onset of Alzheimers (which I've suspected for years) instead of Brain Mets. My god, I've seen people on this site who've been treated for several brain mets and lived for another 6 years! Yet there's no cure for dementia and I was cheering for that!!!

Anyway, after sobbing yesterday for I don't know how many hours straight, I did what I usually do and got aggressive and made several calls to as many people who have been involved with her case as possible. I called her chemo team and spoke to the nurse up north (they're two hours away). I explained to her that I had planned to drive up Thursday night to spend the first 3 hour chemo infusion with mom on Friday morning and then spend a few days with her after that. BUT because the oncologist was going to meet with her on Thursday as well to review her blood work and this worrisome CAT Scan, I needed to know if I "needed to be there". I essentially have medical Power of Attorney for mom and I have consent forms coming out my butt that she's signed that says her case can be discussed with me at any time -- whether she's there or not. So I played that card and luckily the nurse agreed to speak to the oncologist and keep an eye out for the CAT Scan today. And yesterday, she said she'd call me and just say "It would be a good idea for you to be there on Thursday." or "Don't worry about being there on Thursday." Well, she called me at 8:30 this morning and said it's "clean". And god, cancer is a weird, screwed up disease (or we are). Beause I cried from relief for about 5 minutes and then cried with sadness because I realized that I would be on "high alert" like this until......forever!

The irony is that mom and dad were driving into Toronto today so we could get her some great wigs and hats (which we did) and when dad was outside, she said, "you know I'm really forgetful lately (plus slurring her words; plus confused, etc.) and I wouldn't be surprised if something did show up on the CAT Scan Thursday". I couldn't let her worry for a week. I fessed up and told her it was clean and swore her to secrecy -- just in case the nurse did me a kindness. I just don't want to get the poor woman into trouble. So mom won't say a thing and now we both have an easier week ahead of us.

But yeah, Susan, I was praying for dementia! Man, I think I'm the one who's going to lose it first . Maybe that wouldn't be such a bad thing.

Finally, you ladies are so much more medically astute on this issue than I am. Mom has had tremendous pain from her lobectomy (they removed the lower right lobe). They might have had to break and/or saw some of her ribs to do it and maybe that's common -- I don't know and I don't know if that happened to her. She had some other complications as well. So she told me today that is a spot shows up in the other lung, she is not going through another lung surgery. Correct me if I'm wrong, but they can't remove 2 lower lobes anyway, can they? That doesn't leave a lot of breathing power left. I would assume they would use radiation to target a tumour in that case? Just curious if any of you knew. Many thanks,

Kim

[Joppette]

Hi Kim, well I'm happy about the CT scan being clean. That is good. But welcome to the up and down roller coaster ride that cancer is. You will feel this way for a while, until the treatment regime finds it's own routine.

Try to not read into the future. You really can't, and you'll make yourself nuts with worry about further spread of the disease. Lung surgery can be extremely painful, especially when they cut the ribs. They did that with my Mom and she was on morphine for the rest of her life. So if the pain is not getting under control, make sure she is getting the right pain meds. My surgery hurt for about eight months. Took Vicodin every single day. Now it just feels strange, but does not hurt.

As for the concern if they find it in the other lobe, I'm not an expert on this by any means, but I know my breathing capacity and can't imagine them taking another lobe out. I'm thinking they would do radiation to take any further ones out. But I'll be curious to see what other long time survivors say.

Take care,

Judy in MI

[Joppette]

Oh, I wanted to add, that the good news is it was a lower lobe. They are the smaller lobes. Maybe her capacity would be okay. But like I said, try to not worry about that right now. There's enough going on to worry about!

Judy in MI

[Kimfish48]

Thanks so much for your perspective, Judy. Do you know if they broke or cut any of YOUR ribs? What kills me is that my mom doesn't know exactly how her procedure was done, so I've left a message with the surgeon's nurse. I am so glad I have this place to vent because I just don't understand it when people don't ask questions, why they don't want to know things, why they aren't proactive. God, I hate to sound so judgemental, but it's such a different mentality to mine that it's difficult for me to comprehend. And I know that's not fair. I know I have to respect that everyone deals with things in different ways.

I've got my mom down from Percocet to Darvon because the Perc. was nauseating her so much and the Darvon seems to be holding her well. But if she needs more powerful drugs, then we'll have to figure something else out. Is Vicodin codeine based or is it more similiar to Oxycet/Percocet? I know one of them is opiat based and one is codeine based. I shared your mom's info with my mom via email, but was careful to qualify things because I didn't want mom to think that she'd need heavy duty painkillers the rest of her life if they did cut her ribs. I told her (just a brief overview) about your mom's health history and all the issues she was dealing with in addition to the lung cancer -- just so the morphine "for the rest of her life" thing wasn't overwhelming because your poor mom had so many things going on (although constant morphine sounds like a good idea to me right now!).

And I know I'm looking too far down the road and maybe that will be beaten out of me given the twists and turns of cancer, but to be honest, I think that will be the last thing to change about me (and trust me, I know I need to change a lot). I am sooo not a day by day person. I need to understand our options in one year, in two years, etc., and I realize I won't have that luxury now. And that's something that's killing me re:looking for a job. I have no clue what type of job to commit to. Mom could have 5 great years and I could have a great senior and busy role somewhere that keeps me sane. Or I could take a more junior job -- assuming that the worst will happen sooner rather than later and wait for the other shoe to drop. This sucks. And I know it sucks for mom most of all -- especially if someone took a saw to her ribs!

Thanks for the info!

Kim

[Joppette]

Kim, they DID not cut my ribs. Unlike my Mom. And even though my ribs were not cut, the pain was horrid.

Vicodin is codeine based. I'm taking it now because I fell and broke a bone in my back, but I can only take it at bed time for it makes me nauseated. If I can get some food in my stomach, I tolerate the medication much better.

The morphine for my Mom was a blessing. She was embarrassed to be on it, but she accepted that in order for her to have some kind of quality of life, she needed it. She took it in liquid form. I guess all I can say is this....life in pain is no life. If the Darvocet is working, great! If not, not so great. My Mom was stage IV, SCLC, and they offered her no hope. So we went about making sure what life she had was good, and she did enjoy 9 months of life without pain. That was very important to me.

As for your employment situation...do what you think your guts are telling you. You can not begin to anticipate your Mom's outcome. There is no way to do this. We just don't know. Like Katie said, her Mom went in for tests, tested fine, and died 3 weeks later from a stroke. Who knows?????

I was very fortunate that my boss was totally understanding. I was in a Sales position, with a very high quota, but she had known me long enough to say "you only have one Mom, take care of her. I know you will do what needs to be done, once her situation settles down." I thank God for her attitude.

I hope this helps!

Judy in MI

[ts]

Kim,

I have three responses:

1) Do some work on yourself - figure out who you are and who you want to be. Your Mom's cancer can also be your wake up call to not delay your life. If you can figure that out, you'll probably make your Mom happy too.

2) My surgery was full cut - I have a scar from just under my breast, under the arm and up along the shoulder blade. If it had been a VATS surgery, the scar would have been just 3 or 4 short incisions. I also have two short incisions on my side where the drain tubes were, and one short one under my breast - never did figure that one out. I was lucky - no broken or removed ribs.

3) If the day comes when there is a recurrence elsewhere in the body, it is unlikely they would do additional surgery. If it was within the same side of the lung, I guess that might be a local recurrence and a possibility. If there was a new primary (rather than a recurrence) in the other lung, surgery might also be an option. Most often, a recurrence away from the primary location is considered a met and treated with chemo, maybe radiation, and possibly a targeted therapy. But don't put that cart before the horse.

[Kimfish48]

Thanks, TS and Judy. I really appreciate your input. You guys are so much better at "this" than I am. Give me a bit of time and unfortunately, I'll catch up. .

Judy, I think you're right about trusting my gut. My gut says that my mom has a horseshoe somewhere -- especially after fighting and beating a totally different primary colon cancer a year ago. And then being one of only 20% of all lung cancer patients who are operable. So for some reason, I think and I pray and I hope and I believe (maybe stupidly) that we'll be blessed to have her with us for a while. And more than anything, I know what she wants for me -- she wants me to resume my life, which I've put on hold for 5 months now. She wants me to see my friends again, find a great job and not worry about her. Impossible, but that's what she wants. And in terms of my mental health, a good job has always been my emotional salvation. A good part of what I do is executive speech writing -- and trust me, you can't think of anything else when you're doing that!

Re: pain medication, my god, I'm all for it. If someone's stomach can tolerate it, there's no reason in the world to suffer through pain -- especially if you hear the word terminal. I'm on loads of medication. I've got a big metal plate in my neck (ddd) and the pain is constant, so I've got Oxycet for that and Tylenol #3, but the Oxy really upsets my tummy so it's reserved for the worst pain (like a trip to San Fran on a damp and rainy day when the arthritic part of my ddd starts screaming), I'm on anxiety medication, muscle relaxers for my neck at night, sleeping pills, and more. And now my doc/counsellor wants me on anti-depressants because of what we're going through. Been there; done that. And right now, I want to feel the pain and grief. I think it's normal. I still laugh sometimes. I just need to re-enter the world, start seeing my friends again, and get a job. And after watching my poor mom with her mental illness and psychosis, I'm well familiar with the warning signs of a severe depression. So hey, if I could take morphine or Perc or anything else on a regular basis with no side effects and no concerns about addiction -- I'm there! So I will be watching my mom carefully to ensure her pain is managed appropriately.

TS, you said something really interesting that I'd like to ask you about if you don't mind. I think, but don't know, that you implied that you knew -- based on the incision location -- whether or not ribs would have been broken or cut. Am I understanding you properly? If so, what do you make of this? My mom's incision starts on her the back of her right shoulder blade and curves around and down to the bottom of her ribcage. She also had 2 chest tubes in and there are a few other incisions they made to take lymph node samples, including an incision at her throat where they checked for malignancies in her bronchial tubes. Do you have any idea if that sounds like surgery that would typically demand broken or cut ribs? And the fact that I have to ask you is pathetic and embarrassing, but I missed one appt. my parents had with the surgeon and they didn't even ask him exactly what he did. Sigh. I've got a call in to his nurse.

And thank you for the info on recurrence. Mom is worried about a recurrence in the large lobe she has remaining. According to Dr. West, that shouldn't be her biggest fear. In terms of staging, she's an N2 and that means that any recurrence has a 60% chance of happening at a "distant" site removed from the original cancer site -- most likely brain or bone in the case of lung cancer.

And yes, I know I'm putting the cart before the horse. It's the one thing about me that I don't think I'll ever be able to change. I watched my mother wrestle with her major depression and anxiety and psychosis her whole life and I dedicated my life to advocating for her. It's a chemical imbalance and only chemicals resolve the issue. And it's also highly genetic. Luckly, I only inherited the anxiety. And unfortunately, I think that's why the cart is always going to be before the horse as long as I live -- even with medication. I can manage it. I can keep busy. But I can't stop investigating the "what ifs". I don't like that part of myself, but I've done tons of work to change it, including the meds. But at 48, it seems to be here to stay. Fortunately, it's occasionally useful

Thanks, guys. Kim

[ts]

Hi Kim,

I reread what I wrote and I am thankful you are asking me a question. It reads a little more direct than I am trying to be - but you caught me fresh out of group this afternoon!

The rib destruction would not happen with VATS surgery, from what I know (I may be wrong) - that's Video-Assisted Thoracoscopic Surgery. The surgery I had - and your Mom too it sounds like, a traditional thoracotomy, they do a larger cut and get all hands on in there. Depending on what they are trying to get and where it is located and what else might be in the way, they sometimes have to spread or remove ribs. So only her surgeon and the team would know. I got my pathology report after surgery and I think it might have mentioned if they had removed any ribs. For one thing, it could have been tested for any cancer and the report would report those results. But I'm kind of making this up - more my intuition.

[Kimfish48]

Thanks, TS. And no problem with directness! Man, after the last few months, there's not much that sounds too direct for me! And good for you for going to group. Everyone is always bugging me to, but I do so much better in a one on one session or in a forum like this.

Ahhh...I get what you mean about your surgery! Interesting. Yeah, I'll have to chase my surgeon's nurse re: what they did to mom. It's sort of an important thing to know if she wants to understand why she's still feeling pain 7 months later! I love my parents to death, but if I'm not an appointment with them, they just don't ask questions. They don't question the system, the doctor, the procedure, the drugs. I don't think you need to question all those things, but don't you even want to know what he did to you??? I should know better. In my family, I'm the only one who challenges or advocates. And as someone who used to be terrified of conflict, trust me, it has really helped me grow as a human being. Heck, something good has to come out of all this, right?

Many thanks for your second note and take care.

Kim

[Bud Baker]

Don't feel like the lone ranger, Kim. Lots of people just blindly follow what a doctor says, without asking anything. That was one of the more frustrating things I ran into when I was trying to give support by phone. So many people just don't realize how much difference knowledge and advocating for yourself can make. Your family is lucky to have you doing it for them.

[Kimfish48]

Thank you, Bud. That really means a lot to me -- I appreciate it. And I'm glad that my experience with my parents is probably more common than not. I'm not saying that we don't have a great medical team -- we do. But we all make mistakes in our jobs. We all forget to communicate things. And I don't think the medical profession is any different. We're all human and the questions we ask aren't meant to "challenge"; they're just meant to clarify.

I think the most "problematic" time happened when mom was in the hospital for surgery. My dad was still coping with his denial and keeping mom comfortable. I was with her 24/7 as well, but I cannot believe the mistakes that were made in the hospital. And I don't want to single any one out as a bad person or a bad doctor or a bad nurse, but here in Canada, our health care system is "broken". Too many sick people; not enough health care professionals. And I think there's a very nice, tactful, respectful way to ask something or question a decision that doesn't imply you think the other person is an idiot.

But the bottom line is that you are so right. I would hate to be a patient with no advocate. And my parents frustrate me so much because, unless I'm with them (and I'm two hours away), no questions get asked. I guess the "failing" is really mine because I judge them for that and I shouldn't. It sounds like you have the same problem re: the distance issue.

I'm lucking in that the cancer team we have includes a great nurse who has been very patient with my constant inquiries. I'm surprised she's still taking my calls!

Take care,

Kim

[Snowflake]

Kim,

Seven years ago I had both lower lobes of my right lung removed through thoracotomy. My ribs were not broken, but one was nicked, as shown on a later bone scan. I've had recurring pain in the area ever since. Couldn't figure out why, at first, then saw the tool used to spread ribs and understood that my surgeon spread my ribs far enough apart to get his hands in there. Yeah, that very well could be why I have discomfort...

I have issues with confusion and problems finding words. I have seen a neuropsychologist for testing to see if I had early onset Alzheimer's. Nope, but I do have "white cell" damage in my brain. Whazzat? Well, it's not a problem with the gray matter, just the "phone lines" between the cells up there. Annoying, believe me. I've found that when I have a lot of stress in life and a lot on my mind, it's worse.

There are survivors, some here on the board, that have a single lung.

I do agree, that you need to take care of yourself. Follow the instructions the flight attendants give when flying with children - put your own mask on first before helping anyone else. Cancer is a hard concept to wrap your mind around. It's good that you're in counseling.

Take care,

Becky

[Kimfish48]

Forgive me, Becky. I just read your kind note now. Thanks so much for sharing your experiences with me. I can't believe they nicked a rib! And I would have loved to have seen that machine that they used to pry your ribs open because apparently that's what they used with mom as well. Her lower right lobe was removed.

She had tremendous pain after the surgery, but also started chemo very eary after the surgery (7 weeks) and is not tolerating it well at all. In fact, the oncologist is using the "pot pill" as a last resort to try and get her nausea under control. If he can't, he doesn't want to continue with chemo and see her suffer. And of course, that whole notion makes me hysterical. Anyway, my point was that she quickly forgot about the pain of the surgery when chemo came along! I think some of that pain will return when/if she makes it for chemo.

Thanks so much for your insights. All the best,

Kim

[recce101]

Becky said:

Follow the instructions the flight attendants give when flying with children - put your own mask on first before helping anyone else.

What a great analogy! I'll have to tell my wife that one — she's very active in a local caregivers support group (but not because of me, yet...).

Kim, about the surgery details and wondering about the ribs: I believe you said you have health care power of attorney or whatever the term is in your area, so you should be able to get a copy of the surgeon's post-surgery report, which will have all the details. Some of the terminology will be incomprehensible, but what was done about the ribs should be apparent.

I've also been following your thread at GRACE. Best wishes and Aloha,

Ned