MaryTD777

Hi Paula,

I'm so sorry that you have to deal with someone who judges health by looks!! I hope that they never have to face a terrible diagnosis.

That could change medicine for ever!! I can't imagine having to take a look in the mirror to see how I feel!! I've never imagined what it could be like! If I want to be cured, do I go get a facial & see if they could put a pretty face on me. Lots of blush & a fresh new eye liner could signal remission I'll bet!

I wish that friend could see the silliness of what I just shared with you. I didn't get ill at all. I got very tired & couldn't stand the smell of gas. I lived in NJ so I didn't have to pump anyway, but this way hubby would always make sure my tank was full. Even my docs were surprised that my "strong chemo" didn't make me sick. Surprised, not worried!

I hope that the answers above give you hope & that you come back often to let us know how you're feeling once you finish treatment!!

Take care,
Mary

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Hi there,

I am wondering if there was a misunderstanding because I can't imagine anyone looking at a CT scan and claiming a measurement of 1.1mm. 1.1cm is the same as 11mm so THAT would make perfect sense. Just as Buzzy heard that a 1mm difference is virtually nothing, looking deep inside someone using "slices" of a picture that can be taken every 2/3 or 3/5 of some measurement apart, it's virtually impossible to be that precise. Keep in mind I am just a patient too. Whatever those numbers are, you also have to take into consideration where exactly on your person the machine starts shooting. That could easily allow for a small difference of a mm or 2.
10 mm = 1 cm. 2.54 something cm = 1 inch. That means that there are about 25 and a half mms in 1 inch. Now do you see how easy it is for John to measure 6mm on his machine and Jake to get 7mm on his machine a month or 3 later? Add to that the fact that the test measurements can begin a half a mm or so apart from each other on your person EVEN if done by the same man on the same machine.

Now that the size of a mm & a cm are clear, I am very confused by the rest of your numbers changing Saje. I am more confused by the in or between the lobes thing. I have spoken to dozens of people and never heard that one before. I find it confusing that the doctor who sent you for the biopsy wouldn't have told you that it looks like your lesion is between the lobes & that it might be inaccessible as such. Mine was at the tippy top of the lung so I guess it couldn't get further from a lobe delineation point than that!

If he says that being near the fissures shouldn't have stopped your biopsy, then you need to have him find you someone who thinks like he does!

Perhaps no matter what all of these numbers may or may not be, you need to have a serious talk with the first doctor and have him recommend you to a pulmonary oncologist or perhaps a cancer center (always my preference) so you can make sure WTH is what!!

I really wish I could have been of some help!! I had a terribly long day and am afraid that even if I could have helped my babbling would have left you confused anyway.

Please let us know what comes of all of this!! I will cross my fingers that things are shrinking because that's what benign lesions do!!

Take care,
Mary



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Please imagine an ampersand between climbers & mothers.

Toldja I was tired!

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Enjoy what can be called one of the prettiest states in the US!

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Hello Barb,

I'm so sorry you are having to go through all of this. Cancer truly is a beast of a disease and it is cruel to everyone it hits, even caregivers. We all feel the need to "burst out" now and then and you definitely have the right to. This is all very stressful and can be difficult to comprehend. You might want to ask at your husbands place of treatment if they know of any support groups close by. It can really help to have someone to talk to who understands what you're going through.

We are always here to offer a sympathetic ear and advice and even a virtual hug. I pray you find some peace and comfort and your husband finds healing.

Stay in touch,
Michelle


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BMCarter I have to agree 111% with Tom. Without the radiation, there won't be much of anything to protect.

Good luck to dad and all who love him!!



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Hi Paula,
I'm so sorry to hear about your diagnosis. I don't know very much about small cell but I do know that new treatment options are being developed very frequently.
Having said that I also understand what it's like to be facing death. I had a similar experience as you. When I was first diagnosed the Oncologist said 6-18 months with aggressive treatment. At that time I was so sick and had so much pain that I was able to accept that death was in the near future. My family and friends however, were in denial and I couldn't get them to accept the poor prognosis.
My prognosis changed when it was discovered that I had a mutation that could be treated with targeted therapy.
I don't know much about you. How old are you? Do you have children?
How do you feel about death?
Looking forward to getting to know you.
Sincerely,
Lydia
 

Paula,
I gave a more detailed response to your initial post on the SCLC forum, but to your questions -- "does anyone ever live more than 1-2 years?"  Absolutely and I've met many, in fact, I speak with many SCLC survivors.
Stay the course.
Tom

Hi Paula.  Any one diagnosed with lung cancer, with all that stress, the treatment you go through can get depressed.  I did.
To your question does anyone ever live more than 1-2 years.  I have a friend Janet I met in a local support group back in about 1999 and
she had SCLC I am still able to talk to her, she has survived.  She had months and months of treatment , chemo and radiation. 
Doing things that put you in a good mood is really good for you.  It raises good hormones that help you heal. 
Please keep in contact and let us know how you are doing.
Donna G
 

Hi I'm Paula
I am struggling with depression over my imminent (spelling)  death. People want to believe I am being healed by God and I know that is always a possibility but I need those same people to understand it is a greater possibility that I am going to die from this. Does anyone ever live more then 1 or 2 year with SCLC?  I have SCLC that is metastatic? I am in my 3rd day of my 3rd treatment. I am always told I am doing so well in handling chemo and I guess I really am but then it seems to make me look not sick to those around me which is not always a good thing.  Most of the time I live my life to the fullest as much as I can. I do the thing I love the most which is to be with my loved ones. I also shoot some photography when I am up to it which is not nearly as much as I wish I could. That's about it for now.

BMcarter,
I am a 13 year survivor of NSC Squamous cell lung cancer diagnosed IIIB. I didn't have a metastasis to the brain but know many who have had successful WBRT. I am an engineer and the consummate numbers guy. It is not possible for me to under anaylize anything. Quantative analysis with results statistically expressed are my alpha and omega. 
So I've spent countless hours trying to quantify treatment probability of success, and predict outcomes. I've failed miserably. There are simply too many variables to achieve a quanatitative understanding with high confidence.  
Your dad's risk is cognitive function perhaps already esatablished as a surgical consequence or if not established, maybe caused by WBRT. To be sure, it is an interesting problem full of complexity and uncertainty but it is the wrong problem to be focused on. If he forgoes WBRT, he turns loose rapidly growing SCLC on his brain. Quantitative prediction of function loss is irrelevant compared to unconstrained growth of SCLC.
WBRT is a well established procedure that often yields remarkable results. My opinion, deal with the cancer first and worry about cognitive function later. 
Stay the course.
Tom

Hello John.  Glad you found us.  I have to say this is a tough journey.
I was 50 when I was diagnosed with stage 3B lung cancer.  Treatment took over 6 months. Chemo drugs, radiation, then surgery, then more chemo.
That started in  December 1997.  If you fight the fight, some of us will make it.  Please let us know what the doctor says and how you are doing. Do you have some friends or co-workers that can lend some support or church family ? Keep us posted.
Donna G

John,
No we don't take your post as whining.  We've all been where you are now -- going through the typing and staging process.  I was 53 when I was diagnosed with Stage IIIB NSCLC - Squamous cell and that was in February 2004 when treatment options were in the dark ages.  
Tomorrow you'll get the news and hopefully you'll consult with a medical oncologist.  You'll have three treatment options: curative, palliative, and no treatment.  Your real choice is between the first two.  If you have lung cancer and do nothing, your quality of life will be very painful as the disease spreads.  Palliative treatment generally consists of the same processes as curative (radiation and chemotherapy) adding narcotic medication to relieve pain.  So, unless you've got a very high tolerance for pain, you'll at least choose palliative care.
I wouldn't discount curative treatment just yet.  Depending on the type of lung cancer, there are many emerging therapies that are successfully controlling and sometimes eliminating lung cancer.  You should at least explore those options before you decide.
Let us know tomorrow the results of typing and staging and we'll give you some more insight based on our treatment experience.
Stay the course.
Tom

Different mutations have different treatments. I don't know much about it other than some have been responding great to new things. I would guess that not all mutations have great new treatments, but that's just me assuming.

You know what happens when one assumes... right? *wink*

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When I was somewhere between the CT scan and the biopsy (I think... ) I was sitting in the garage (my smoking room) and read for about the tenth time: If the patient is otherwise healthy & a non smoker, surgery can...


At that point I reached for a cigarette and when it hits me what I was doing as I was reading what I was... I called myself a LOT of choice words. Seriously bad words. I was 47, just 3+ years into my 2nd life... well, 2nd marriage. I had a 21 year old daughter who was just learning I wasn't as bad as she thought I had been during those teen years. I had been smoking for around 35 years. While there might be people out there who thought I deserved to die of lung cancer, I disagreed.

I picked up that pack of cigarettes and the lighter and I walked over to place them on my husbands piano and few feet away. I kept googling lung cancer and every half hour or so I reached.
And I thought.
And 30ish minutes later I did it again.
And again.

That was March 2011

And I haven't smoked since

That was after getting up to 3 packs a day during my : " 2 jobs 4 or more days a week, 2nd one in a bar so even if I wanted to quit smoking my environment would keep me full of smoke so why bother quiting, something's gonna kill me anyway " days.

If I can quit, ANY FORKIN BODY can quit!! Seriously!! The only other time I quit was when I was 16... for 6 months. A guy sent me back with a kiss LOL
Maybe if I liked him
And he didn't do it in front of the only guy I DID like!
Oy!
Just do it! If you don't want to, creams, lotions, stickers, candy, gum or a giant lottery win ain't gonna make you quit. If you're ready, you don't really need that caca.

And like Tom said, try to relax!!
Mary

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Just chiming in that it sounds like he got to the right place & has good plans laid out for him. I will keep those prayers going for y'all!

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When I was somewhere between the CT scan and the biopsy (I think... ) I was sitting in the garage (my smoking room) and read for about the tenth time: If the patient is otherwise healthy & a non smoker, surgery can...


At that point I reached for a cigarette and when it hits me what I was doing as I was reading what I was... I called myself a LOT of choice words. Seriously bad words. I was 47, just 3+ years into my 2nd life... well, 2nd marriage. I had a 21 year old daughter who was just learning I wasn't as bad as she thought I had been during those teen years. I had been smoking for around 35 years. While there might be people out there who thought I deserved to die of lung cancer, I disagreed.

I picked up that pack of cigarettes and the lighter and I walked over to place them on my husbands piano and few feet away. I kept googling lung cancer and every half hour or so I reached.
And I thought.
And 30ish minutes later I did it again.
And again.

That was March 2011

And I haven't smoked since

That was after getting up to 3 packs a day during my : " 2 jobs 4 or more days a week, 2nd one in a bar so even if I wanted to quit smoking my environment would keep me full of smoke so why bother quiting, something's gonna kill me anyway " days.

If I can quit, ANY FORKIN BODY can quit!! Seriously!! The only other time I quit was when I was 16... for 6 months. A guy sent me back with a kiss LOL
Maybe if I liked him
And he didn't do it in front of the only guy I DID like!
Oy!
Just do it! If you don't want to, creams, lotions, stickers, candy, gum or a giant lottery win ain't gonna make you quit. If you're ready, you don't really need that caca.

And like Tom said, try to relax!!
Mary

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Hello Stoked surfer,

I am also very happy to hear that your mom was Dx early & her surgery went well!

Some doctors order some post op chemo to sweep up in case anything was left behind. Obviously, if only some order it, some don't. The doctor might want to wait for pathology results to see if clean margins were removed... that they took enough extra tissue around the tumor to be certain nothing was left behind.

What is important is mom & how she feels! It sounds like you got doctors who have this goal as well. I will keep my fingers crossed for the best outcome with the least harm to mom brings a great many years of healthy enjoyment for all of you!

I don't know if there was any testing done regarding mutations on your brother's tissue, but with a mom & brother both Dx, I would be thinking of some testing for yourself & any siblings you might have. Better safe than sorry as they say.

Take care,
Mary

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Hello Stoked surfer,

I am also very happy to hear that your mom was Dx early & her surgery went well!

Some doctors order some post op chemo to sweep up in case anything was left behind. Obviously, if only some order it, some don't. The doctor might want to wait for pathology results to see if clean margins were removed... that they took enough extra tissue around the tumor to be certain nothing was left behind.

What is important is mom & how she feels! It sounds like you got doctors who have this goal as well. I will keep my fingers crossed for the best outcome with the least harm to mom brings a great many years of healthy enjoyment for all of you!

I don't know if there was any testing done regarding mutations on your brother's tissue, but with a mom & brother both Dx, I would be thinking of some testing for yourself & any siblings you might have. Better safe than sorry as they say.

Take care,
Mary

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So glad you found out what it is! While not great, compared to some of the things that were going through your mind, I'll bet you're relieved.
Get well soon!

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Hi Isaut,
About travel insurance: Your step dad  can probably get travel insurance.  Tom's advice about reading the fine print is excellent. There are some policies that will cover pre-existing conditions with certain limits.  For example, you might have to buy the policy within a certain number of days of making the first payment on the trip, and also you probably have to be able to travel on the date you buy the insurance. Being a survivor of 3 cancers, and having had to cancel a trip  due to late occurring treatment side effects (and lose some money despite  having  travel insurance), Ive gotten to be a careful reader of fine print.
I suggest the site insuremytrip.com on which you can compare a lot of different policies from different companies. Be sure, as Tom advises, to look at the actual policy and not just the summary.
Happy travels!

Update:
I saw a pulmonologist yesterday and really like the guy.  He took time to go over all my CT scans and x-rays, showing me the nodules and telling me exactly what he was seeing and thinking.
First, he thinks the two nodules are totally unrelated to each other.  I said I was concerned about them being bilateral and he said that his gut told him that they were not related but we would keep and eye on them.
The original, smaller nodule at the base of my left lung that measured 6mm in July has remained stable in his mind.  He showed me the comparison of it in Sept. and Dec. and said in his mind it hasn't grown at all and might be beginning to show signs of calcifying.
When I asked about the 6mm vs. 7mm he gave me the same answer you all have given me on here.  He talked about the slices and how intricate a 1mm difference is.  He said he thinks it was between 6 & 7 mm in July and still was between 6 & 7 mm in December.
The bigger, 13.5 mm nodule at the base of my right lung was a different case.  He said the way it developed and the way it looked gave every indication of it being an infection/inflammation.  He even felt it could have been an early stage of pneumonia that the medication stunted before it could really blow up.  Anyway, he said he really felt like it did not look like either lung cancer or metastases. 
He did say that the chest x-ray that was clean in early January didn't really give him any useful information.  The nodule of the left is too small to show up on x-ray and the one on the right is basically hidden by the diaphragm.
He is going to have me get another CT in April more for the bigger one on the right than the one on the left which he feels looks stable.  If the one on the right hasn't grown or has gotten smaller, he said we will follow up in another year or so.
He told me to get back to running, and not dwell on it.  He said if he really believed anything looked suspicious he would move much more quickly.
Anyway, I wanted to update you all.  Hopefully I'll get good news in a few months.
I hope you are all doing well and thank you once again for being so kind and caring to me through this experience.
I really appreciate you all.
 
 

I appreciate you all so much and am praying you all continue to get positive news on your own battles.
thank you all so much.

Tom, Mary and Bruce,
I wanted to share what I felt was some positive news with you that I got today.
Ive been wheezing the past few days so I went to my GP to see what he thought.  Before he examined me he wanted to talk a little about my nodule concerns.  He showed me a report from a ct I had in late September when I had a second kidney stone ER visit.  Since it didn't mention the 6mm nodule found in my left lung in July, he requested that the radiologist that read my December ct checkup to go back and reread the sept ct as a favor.  The radiologist found the nodule and measured it at 7mm, so between Sept. 27 and Dec. 22 there was no change which is a good sign.
After he listened to my lungs he suggested I get a chest Xray to check on the bigger 13.5mm nodule as well as get a look at what might be causing my wheezing.  He called me back a couple hours later and said he had some good news.  The radiologist read the chest Xray as completely clean with no sign of pneumonia or nodules.
Now, he was quick to point out that the Xray is not nearly as sensitive as a ct and that both nodules are likely still their but the fact that it found nothing meant that the 13.5mm nodule that was new in December had most likely not grown and very likely had shrunk some. He said a 13.5mm nodule would most likely show up.
So my good news was that the left nodule is likely stable at the moment and the bigger nodule has shrunk or might even be gone if it was an infection.
Im still going to a pulmonologist on Jan 23 and he will look over all my scans but this was a good day.  
Im still not out of the water and expect another ct this spring, but it was nice to get some positive news.
i want to thank all three of you for taking time to inform and encourage me.  I will keep giving updates and definitely plan on checking in often to keep up with you and others.