HUGS for Janet W

[stephnewyork34]

I agree with Katie, I think the other string was too long and too argumentative, even by me. So I am starting a new one, to send Janet W HUGS and LOVE, and my support no matter what her decision! Janet we are all here for you!! lots of LOVE to you!!! and your family. May God Bless you.

Stephanie

[norme]

Me too.......hope everything works out well for you....

[kimblanchard]

Thank you.

I talked to radiation oncologist yesterday. He was amazed that anything turned up positive for cancer -

I've gotta' run to work now but I'll come back this evening and explain -

He thinks the best thing to do is absolutely nothing right now - he has another patient who has done "nothing" except essiac and some supplements and his has stayed stable for 1 1/2 years with no progression and causing no problems -

I'll continue on with prayer, go back to using essiac and pcynogenols, also some enzymes - strive for a veggie diet - PRAY - transfer back to my old school at end of school year to reduce the stress -

He thinks that will do more good that going and zappping it and possibly just getting things stirred up and angry - it's very very very slow growing and lazy right now.....so to speak -

works for me.

God is still taking care of me - it just gets lonesome and scary sometimes when things get to looking bad -

[Eileen]

Janet W

I am sorry to ask this ---- but did you get another opinion? I am not sure how it can be slow growing if it was not on your last scan---I have never heard of a Dr. say "do nothing" when cancer has returned and is stage 4---I have heard of Drs saying wait and see if it grows to see if it cancer, but never when it is positive for cancer, do they wait and see--- (of course I do not have vast experience, but just everything I read for the last three years is consistant)

I know you do not want treatments but you may want a second opinion as to your stage of cancer

regards Eileen

nsclc stage 1A

lobectomy 6/00

[stephnewyork34]

Janet,

Of course it gets scary and lonesome, so that is why this board is here to help you.

I am scared and alone and I dont even have cancer, it is my Mom who has it, so that is human. Do what you need to to get through it. and i hope it works out, but I hope you get another opinion.

*hugs* Stephanie

[kimblanchard]

Eileen,

I'm not sure what to think exactly and I think maybe the doctors don't quite know either.

Up until the PET scan, everything has been okay and they've staged me as stage 1a. Up until the PET scan, they just did an xray every 6 months and then in July, they did a CAT scan - the first one since the surgery back in 12/01. 1 1/2 years and that's the first CAT scan.

After some questioning about whether they were looking at an artery or a mass, the doctors determined all was well and no cancer, no spread, etc. from that cat scan. I was told I was fine, come back in January.

I went to an oncologist, asked what he thought about me and my state of health - he was 90% sure I was FINE, and ordered PET scan for "peace of mind" -

The oncologist who ordered the PET scan to begin with was uncertain about what he saw on it - he's an older man, has treated lots of patients, seen lots of cancer, lots of PET scans - and he was unsure about my PET scan, whether it meant cancer or not. So he sent me back to my surgeon with the PET scan in hand - no peace of mind there - the scan showed lymph nodes in center of my chest lighting up, and one in my neck.

The surgeon was unsure when he looked at it - told me it might be nothing - but then again, if it was cancer they would treat it aggresively. Said if the lymphnodes in my chest were cancerous, that would be stage 3 - if the one in my neck was cancerous, that would be stage 4. BUt it COULD be inflammation, touch of bronchitis, bad tooth, etc. SO they scheduled the mediastinoscopy and bronchopsy..did the mediastincoscopy - all the samples from it came back negative for cancer and he woke me on the table to tell me all was fine - and he didn't go after the lymph node in my neck as it appeared all was GREAT.

I went in for my two week followup appointment the other day and the second set of samples weren't so good - All were free and clear of cancer except ONE lymphnode, which showed adenocarcinoma, and it is "subcarinal" (not sure if I spelled that right). Surgeon said it wasn't operable, that this was fatal, etc. I asked about the one in my neck, as he hadn't biopsied it - he said likely it was cancerous as well -

So stage 4. Definitely terminal, could at the most buy some time.

I went to the radiation oncologist yesterday and he read the reports - pet scan hasn't made it back from the other doctor's yet though, just the reports -

The radiation oncologist is thinking this may still be very early ?!- this does NOT show up on cat scan or xray - it lights up on PET scan, but doesn't show up on cat scan or xray. It would be unusual to have the cancer in one lymphnode and nowhere else - I guess? - so the question is where else is it - it's just too little to be showing up somewhere else right now?

He said it was slow growing because it has been two years almost since they removed the cancer - and it hasn't shown up until now - of course, they've never done a pet scan before until this recent one - how would they know? He was certain it wasn't spread like that when the surgery was done, though -

He said usually it comes back in 6 months so it taking 2 years to come back made it SLOW -

I have no clue but if I have to be terminally ill, it'd be better to be real slow getting there??! LOL! Oh dear.

He suggested a cat scan in October - then a cat scan every 3 months to follow it and see if it grew, spread, etc. before attempting anything - said If I really WANTED to go ahead and go after it, they could , but...

suggested it might be better to wait and not use radiation until absolutely necessary as the stuff keeps coming back again and again and your body can only take so much radiation -

As of now, it doesn't show up on cat scan or xray either one, just PET scan.

According to surgeon, this is stage 4 with lymphnode in neck being cancerous (that hasn't been confirmed cancerous but he said it is likely) - or at the very least stage 3 with it being in a lymphnode in center of chest -

Radiation oncologist felt there was about a 5% chance of "curing" it if we went after it right now, and a 95% chance of it returning, maybe faster, angrier.....

That this is normally fatal..the key is buying as much time as you can with as much quality as you can.....

and this isn't interfering with quality of life for me right now except making me crazy with worry and grief - I can breathe just fine, I can walk and talk and run and work and think and do all things I've always done -

Just like my father - he was fine in most ways, other than having the quarter sized mass in his lung - when he entered treatments. He made it about a year and a half - suffered tremendously - if he had done nothing at all, his quality of life would have been much better and the quantity quite possibly about the same - possibly longer? I don't know -

I may go back in October, have cat scan, find that cancer is growing everywhere left and right, I don't know- I sure hope not - but the radiation guy seemed to think what was there could take a long while -

that this could still be early on -

and he said that he HAD seen cases where such things disappeared entirely, miraculously - he's not that old of a man, so maybe the miracle of cancer disappearing happens more often than we know, if he has already seen it happen a number of times in people -

It lets me breathe - to me, this means a bit of time - maybe just a little, but maybe in that little time, things will work to the good, and God will heal me -

I know some people don't believe in such a possibility, but I can hope, and will keep on hoping. I prayed for deliverance from smoking 2 years ago - I also prayed for my days and years to be extended, to let me live to raise my children - long before I ever knew I was sick or that there was cancer - I believe God will answer my prayer as the Bible says He hears our prayers - also it is written about how when a child asks for something from a parent, how the parent does not give the child a stone.. and how much more loving God is than an earthly parent -

So my thinking is I asked for extended time before I knew I was sick - I asked for health and home full of joy and love - Would God give to me sickness and death instead? I surely hope not -

I hope that this is all part of a process of being saved and healed and having those prayers answered rather than a rejection. I can't see a rejection as anything else other than being unsaved - hope that won't work out to be the case. I know some churches think that there is a point where some people cannot be saved anymore, when they've backslidden, etc. and I know other churches believe differently - I don't want to get into a thing here about what the different denominations believe on this - just terrified that I may have missed the boat , so to speak, if He remains silent and doesn't heal me -

I'm a huge baby - like the little one who screams his little head off the moment the mother shuts the nursery door, because he is afraid she is gone forever - I am the same way with God - when I can't see Him (so to speak) because it is dark and I am scared - I scream my little head off, crying, fearful. All I have is hope that He will return, that He will heal - to think for a minute that He wouldn't is too much sadness for me to handle. That's where I cease to function.

I got off topic again - oops. Back to the radiation guy. He mentioned the medicines they would have within a couple years- that work very well ?! something about anti-virals - we're talking pills, not chemo.....

As for a second opinion - I guess I could go see someone else somewhere else. I don't think there is any chance of a "cure" though, unless it is from above. If they can't offer me a cure, or a significant increase in survival time, I don't think I can justify treatments -

[stephnewyork34]

Janet,

I just read your last post, that clears things up a bit, at least for me, and maybe others,

Anyhow, it is surely a rollar coaster, and that is how it has been for my Mom, literaly, they have said you are going to die, we can't operate, you have a couple weeks, a month, and back to we can cure this, so sadly, as you know, it changes all the time, she has fough to get now two surgeries and now she is better, if she had given up, she'd be dead now. Simple as that.

I think the great news for you is that you don't have symptoms, and that is great.

I worry, however, that if God doesn't miracle cure you, you will feel like you missed the boat and he is punishing you. In my version of Christianity, what I have learned, is that God doesn't punish and He loves you and you are forgiven for believing in him and Christ.

I commend you for having such a strong faith and I hope it works for you, and as I have said I will support you in your decision, and from this last post it doesn't sound like you are totally giving up, like your posts before.

I am sorry you are so scared, and angry,and all I can do is offer an ear, and a long distance hug to you.,

Please keep us up to date on your condition, and may God Bless youm which ever way He does.

[Fay A.]

Janet,

I'm wondering if you have Bronchioloalveolar Carcinoma (BAC for short, and a subgroup of Adenocarcinoma). If that's the case (if you have a BAC component to your cancer) you should be seen by someone who is an expert in lung cancer, and hopefully one who has a special interest in BAC. I can tell you from personal experience that BAC is a strange piece of work. I can also tell you that there are clinical trials using the epidermal growth factor receptor inhibitor, Tarceva , going on now for those of us who have BAC or a BAC component to our cancer, and the early results are encouraging. Where do you live? I will find out the location of the nearest trial for you, a point of contact, info on transportation for you to the site (Corporate Angel Network flies folks who need to travel for cancer treatments), provide you with a number for information on financial assistance to help defray the costs of treatment. The side effects from some of these epidermal growth factor receptor inhibitors can be easier to handle. Plus there are some who have BAC who are using Celebrex for it's antitumor properties who have stable disease.

I also want to remind you that I had subcarinal and hilar lymph nodes removed last May when they took out my lung.

I would also like for you to know that my insurance is considered one of th worst payers. I would have access to more options in health care if I were on welfare in my State. So I know how hard it can be...but I also know that if we fight hard enough we can sometimes get what we need.

Let me know what you want to do...

Fay A.

[kimblanchard]

I tried celebrex - twice - each time it gave me severe diarrhea - very severe - so gave up on trying to use that.

I don't know about that flying and going places kind of thing. I have 4 children and have to watch after them. I don't have a mom or anyone to look after them. I know most people have someone who can watch their children. I don't.

[keo4]

Hi Janet,

Good luck with everything! I really hope that everything works out for you and your children. I will pray for you and commend you for your stong belief and faith in the Lord

Kathi

[stephnewyork34]

Janet!

How are you doing today? Haven't seen you on the board in a couple days.

PS Have you read,

"It's not about the bike" by Lance Amstrong?? I read it, and sent it to Mom, and you should read it. It may provide some hope, if anyone shouldn't be here, it is Lance.

*hugs* to you.

[Guest DaveG]

Your story and my srory go side by side. When I had my first surgery, I had 1/3 of my lower lobe and 1/6 of my upper lobe, right lung, resected. The result was adeno carcinoma, Stage I. In Auguat, 2002, on a follow-up ct scan they spotted, what appeared to be another tumor in the same location as the first, lower lobe of my right lung. So another round of surgery and this one turned out to be benign. In both surgeries, lymph nodes were negative for cancer. Then, this past April I went in for my 6 month surgery follow-up, another CT scan is done and I have lymph nodes in the mediasteinal area lighting up. I contact my oncologist, got an appointment with her for the next day, took the CT Scans along and she can't make a decision off one CT Scan, so I have to gather up all my CT Scans from the other hospital. I go back, she looks at all the Ct scans and schedules me for a PET Scan.

The PET scan showed systemic mets to my lymphatic system, with tumors in my neck and groin, and one fairley large tumor around my heart. Based on the PET scan I went from a Stage I to Stage IV, just like that.

The chemo did what it was supposed to do, shrink the tumors. The last 2 CT Scans showed stablization of the tumors, with no new growth. So right now I am just playing the waiting game.

In reading your story everything sounded so familar, I couldn't believe how much alike we have been in our journey with lung cancer. The cancer just had to get outside our chests and we're Stage IV.

I wish you luck and hope the outcome is as good as my outcome. My oncologist does not like to talk about prognosis, she only likes to talk about what she can do for me and if there is something she can do, she will do it. Furture rounds of chemo are still on the horizon, and she will go that route if the tumors ever show new growth.