Rambling Questions...

[Annie01]

Hello,

Please forgive me for this long message. I want to ask your advice about a few things, but feel I need to provide some background information first...

We finally got a diagnosis for my mom this week. She has Stage IV squamous cell NSCLC with some metastasis to lymph nodes in the chest. The thoracic surgeon who provided the diagnosis referred her to an oncologist who will see her 3/23 to discuss treatment options, so we're back to waiting AGAIN! Ugh!

In addition to the cancer on the lungs and lymph nodes, the PET scan showed some really bright spots in the brain, liver and bladder. When mom asked the surgeon about it he said not to worry as there's always a great deal of metabolic activity in those areas which the PET scan picks up. Only an MRI would tell us about cancer growth in those areas.

My sister and I have noted on a few occaisions that my mom seems to be getting "forgetful' which seems to coincide with her learning of her lung cancer. For example, I spoke to her a few days ago and she mentioned a visit from my cousin and went on to tell me about their conversation in detail. We then went on to talk about a couple of other things and she then said, "oh, did I tell you John (my cousin) stopped by?' It struck me as odd, as it had been less than 5 minutes since we had talked about him.

My mom is 69 years old and has been smoking for 50 years. She is still smoking which I totally understand. In fact two different doctors told her now is probably not the time to quit. The stress of trying to quit might be too much given all the other stress she's dealing with now.

I have been a smoker about 27 years and quit cold turkey 2 days ago. I am determined to stay quit. Part of the motivation was obviously my mom's diagnosis. In addition, my 9 year old son started crying last week and said to me he was scared because "Grandma is so sick and it's probably because of her smoking and you smoke too". Well, I felt like the worst mother in the world at that moment. So I decided, "if not now, when?" I am achy, irritable and restless but I keep reminding myself this is nothing compared to what my mom is facing.

Now my questions...

1.) I was under the impression PET scans would show metastasis anywhere, otherwise why do they scan these "high metabolic areas" if it's not going to tell them anything? Should we ask the Oncologist for an MRI of these areas or is it standard operating procedure to order an MRI before determining treatment?

2.) Is the forgetfulness "normal"? Perhaps she's been talking with so many people lately and under stress that she forgets who she's told what to??? Because of this should we insist on checking out the brain?

3.) I live 200 miles from my mom but my son and I will travel to visit her over his spring break at the end of the month. One of the things we always do at her house is sit around the kitchen table, smoking cigarettes and talking about everything under the sun. I really am determined not to smoke anymore, but I know how much my mom enjoys our talks and part of me thinks we sub-consciously bonded over smoking. (No one else in our family smokes.) This probably sounds very strange, but how do I make sure my mom still enjoys our talks around the kitchen table without thinking twice about me not smoking. I don't want her to feel bad or guilty and I don't want to feel that way either. Any ideas for something loving and helpful I could say? Or do I just ignore it and act like it's no big deal, which seems a bit disingenuous to me.

4.) What general information can anyone provide about dealing with stage IV NSCLC, treatment plans, things to watch out for, ways to make her the most comfortable she can be etc.

Thank you so much!

Annie

[Snowflake]

Annie,

I was 34 when diagnosed and a non-smoker. Let me assure you, there are MANY things I forgot after hearing my diagnosis. I missed deadlines at work, I missed pertinent parts of conversations, soooo many things. I believe that it's stress.

After my surgery, I remember going out to the kitchen for something (I still have no idea what). I opened all the cabinets and walked back out in the living room and sat down. Five minutes later, I looked at to the kitchen and all the cupboards were still open (thank goodness I wasn't looking for something cold and left the refrigerator open!). For a while, I was getting lost on my way to work (30 miles) and running red lights. I STILL have those moments for forgetfulness, and check all lights at least three times before proceeding, and my treatment was over five years ago!

As for the bonding over smoking, can you sit at a table outside? That way, she can smoke and you aren't so inundated with the scent... Also, I suggest you speak with your family physician and get some chemical help with the quitting. You may like yourself a bit more, and your son may still have some of his rear intact by the end of your cold turkey run...

As for PET scans, they show metabolic activity. It lights up cancer, but I'm sure it can light up infections, as well. I've never had a PET scan, lots of other things to make my pee glow and my eyes work as lasers after dark, but not a PET scan. I know that I had a bone scan that showed an "active" spot after my surgery - it was cracked during surgery and was healing, therefore "active".

Try not to read too much into things. Sometimes, the scariest spot on a scan can be a nipple or an eyeball. No lie!

Best of luck to you on your quit and your mother on her fight!

Becky

[Outrider1]

Annie01,

PET scans show metabolic activity at the cell level. They use a radioactive glucose solution that is put into your veins via an iv tap (iv- intervenous , tap-just to administer the solution and nothing else and removed immediatly after giving the solution) The radioactive part shows up on the scan as bright white spots. The cancers cells use a tremendous amount of glucose to multiply and divide. The spots that show up in areas of the body other that the brain, skull and the bones, indicate areas of possible cell multiplication and growth.

A PET scan scans from the eyes to the thighs because bones and brain also use a tremendous amount glucose. Actually glucose is the "fuel" that your brain uses to function normally. Since the brain is surrounded by bones of the skull, the brightness of those areas can not be used as a guide in cancer diagnosis. That is why they use an MRI.

REmember, that all the diagnostic imaging test have separate and distinct functions.

X_rays- scan bones and very dense soft tissue such as masses or tumors but only show details for the bones.

CTs- show more detail of the bones and dense soft tissue masses or tumors and pick up less dense soft tissue masses or irregularities

MRI's show much more details of all areas especially when give with contrast.

PETs show cancer growth by show activity of masses or tumors.

Sonograms show soft tissue masses and tumors and pinpoint more precise locations and size and shape

All of the test show location, size, and shape, just some show them in better detail than others.

Now the forgetfulness. It can be just a normal sign of stress. She has so much information that is being given to her, she maybe overwhelmed by all the information at a time that she is having to also consider life altering events. Having been diagnosied with small cell lung cancer, I know how overwhelming all the information is while trying to digest that I have a terminal illness. It was especially hard before they came up with a treatment plan and I was worried if I was going to drop dead tomorrow. Once you come up with a plan and start acting on it, mom may be better. It may help to slow the information to only what is immediately needed to determine treatment and get that going in the right direction, then add information as you see she can handle it.

For the downside of the forgetfulness, it could also be signs of metastasis to the brain, which can be treated. That is why the Dr. wants and MRI. Lung cancer, especially likes to migrate to the brain. I feel (and this is my opinion not based on scientific fact or certainty), that lung cancer uses a lot of glucose and migrates to glucose rich environments such as the brain, and the adrenal glands. But the major thing to remember is that metastasis to the brain can be treated and treated well, depending on the stage of progression.

The smoking. I hear you, in my family we are all kitchen sitters, gathering around the kitchen table to talk and share our lives. No one smokes in my mother's house because my father smoked and when he quit we just all started going outside to smoke. My mother made the request so we did; no muss no fuss. I would not bring attention to the fact that you are not smoking as it will bring attention to the fact that she is (if she still is), which will make her fell guilty, which is something she doesn't need right now. If she asks just tell her it is your way of fighting her cancer for and with her and leave it at that. It may just give her the added strength to quit, especially as she sees that you will not judge her either way. I really commend you on stopping. I know how hard it is.

General information: this will be on the treatment side of things. One thing I have seen talked about a lot is the side effects of chemo and radiation. Problems with sores and thrush in the mouth. The one thing everyone talks about is that nasty concoction they call Magic Mouthwash. It has several ingrediants, one being liquid lidocaine. There is no way to disguise the awful taste of lidocaine. Many people swear by this stuff, but I found yogurt (the kind without fruit pieces) to be much more palatable and just as effective. It will also clear up the thrush which is a yeast infection in the mouth commonly seen in infants due to new unsteralized bottle nipples. The main thing is to keep her pain (if she has it)under control and work with the doctors on that. Do not worry about addiction, it is really a non-issue in this instances. Be supportive as possible. This is not the time to fuss about things that she has no control over (such as smoking or forgetfulness and I am not saying that you would, but others may), or any of that. This is the time to band together and fight the beast (cancer). as well as you can. Also remember, as long as she is capable, all things are her decision but she might need help and reassurance that what she is doing is the right thing. Cancer may have involved you all, but it is physically happening to her, a lot of confusion, questions and decisions go with this ride, and sometimes we need help to think them out first. I go to my oldest daughter with those type of thoughts all the time.

The last thing, you and all other family members need to remember this cancer has involved you as well and you are having to deal with it from the sidelines, which is not easy. Remember to take time for yourselves,. be gentle with each other and your selves, as this is a hard road but one road that you can get through with love and understanding.

I'm sorry this is such a long reply but I wanted to cover all of your questions from someone who is like your mother, physically having the disease.

I hope some of it helped.

Dawn

[Annie01]

Hi Becky,

Thank you for your advice. You are so right about not reading too much into things. I should probably know better.

I hope you won't take this the wrong way, but I had to laugh about your kitchen cabinet story. It was easy to visualize. I can imagine there were plenty of times you were present, but not "there" because of all the stress.

I saw an "expert" on tv explaining that we all have senior moments. We all forget where we put our keys, it's when we forget what the keys are for that we need to worry.

What a great idea about sitting outside with my mom. I'm going to try that! Let's pray it's warm by then.

As for getting chemicals from the doc for nicotine withdrawal, I've decided against it. I've tried that before and it didn't work for me. I had horrible insomnia etc and eventually went back to smoking. I recently read where it prolongs the withdrawal process. If I can just survive the first 72 hours, the physical withdrawal will go away--and then it's just a psychological battle. (Just! ) I also read where 90% of successful long-term quitters went cold turkey. I want to be in that 90%.

I read your story. Congratulations on your 5 year milestone! What a wonderful thing! I wish you a long, healthy, happy life!

Annie

[fillise]

Annie--Good luck to you on quitting smoking! I am almost willing to bet that your mom will approve of your decision even if she can't stop herself. As long as nothing else changes when you sit and talk together, it should be ok.

I'm sorry to hear about your mom's Dx. The others are right. Different tests show different things. My mom is a 2 year (and two months!) stave IV NSCLC survivor. There are good treatments that can help. My mom was really afraid of chemo, but it wasn't nearly as bad as she feared it would be. She had a chemo on Tuesday and went out to lunch with friends yesterday.

Check back with us to ask any other questions you may have. Someone on this board will be happy to share their experiences and the rest of us are here for support.

Susan

[SandraL]

Hi there Annie. I just wanted to comment further on the smoking thing and talking with your mom. I am sure she will be thrilled that you have quit and probably wishes she could herself. And you obviously have the empathy of her not being able to or not wanting to right now. So I don't suspect you quitting will be much of an issue. Talking outside sounds like a great idea if possible. But if not, a little second hand smoke at this time is not going to make a huge difference in the grand scheme of things. I am sure you are more concerned about spending quality time with your dear mom. I am sure all will go well. Take care

Sandra

[Annie01]

Thank you all. Your information and encouragement is very helpful. It is so wonderful that we all have a place to vent/ask questions etc. I feel so much better than I did the other night.

I'm not going to worry about mom's forgetfulness. I really appreaciate the info about the differenty types of scans.

Still going strong on the no smoking. I wish DH would quit too, but I know better than to push. I hope it's as beautiful today where you are as it is in Chicago. Have a wonderful weekend.

Annie

[kukla]

Hi Annie - Congrats on your decision to quit smoking!! That is awesome. I quit with Chantix when my husband was diagnosed - stage IV. It really is awesome although you still have to go through the emotional aspect.

My husband has had 2 pet scans. Infection and inflammation can also show up as hot spots. He has had two bronchoscopies and some of the hot spots came back negative for cancer. So it' something to be concerned about but it's not an automatic dx for that area.

As a caregiver you need to give yourself time to adjust to all of this. There are more treatment options now so the doctors will be able to figure out what to do and what other imaging studies are needed. This site is a great source of support and there are others out there too. You and your mom won't be making this journey alone!

If you can't sit outside with mom and smoke, what about an air filter? It will at least take the smell out of the air. Also try chewing on cinnamon sticks - a trick a tobacco cessation specialist told me about. They give you something to do when you are around others who were smoking and if you are tempted to take a drag, it will taste really bad after having the cinnamon taste in your mouth.

Don't worry about the forgetfulness, it's all part of this nasty and hateful disease. It robs patients of many things emotional as well as physical. Just love your mom and support her like you are doing - you are off to a great start as a caregiver for your mom and an example for your son.

Good luck!

[Nick C]

#1, I would say order the MRI before you see the onc. Do you want to go down one path of treatment only to find there are now other things which need to be done? Call monday to the doc who gave the PET, have him/her order the MRI and that way the onc will know everything. Given the diagnosis, the forgetfulness (which you say is unusual) and the PET results, I think to all of that at least says get the MRI out of the way ASAP. I could tell you don't like "more waiting" based on your post...a visit to the onc without the MRI already dne will probably result in more waiting.

#2 Is there someone going to these appointments with her? It is often overwhelming, esp. that first onc meeting, so I would think two sets of ears would be best.

#3 in response to your question 4, the answer is, it depends. Just go with your mom's wishes, make sure she has all the info she needs, and the rest will work itself out.

Best of luck.