I'm at a Crossroads and Need Help

[Peachy]

I was told by a radiation oncologist that I will never again feel as good as I do now. It is suggested that I have whole brain radiation followed by six weeks of chemotherapy. Until now I have put off treatment to spend some quality time vacationing with those I love.

I am considerating putting off any treatment until I begin to feel poorly. Right now I feel fine with a bit of heaviness in my chest and some lightheadedness and nausea in the mornings.

This is my only forum for seeking the advise from those who really know.

Thanks for any help you can give me.

[carolhg]

You may be denying yourself much love and support from the family members that you do not want to burden with your illness. It I were you I would have the treatment as soon as possible. I can only speak from my own experience. I was so terribly scared and the people on this website, my friends, family and neighbors were so supportive of me. I don't think I could have made it without them. My prayers for strength and healing for you whatever decision you choose.

Carol

[Peachy]

Thank you for your kind response. You were blessed to be diagnosed at such an early stage. I am stage IV. I will pray that you continue to be disease free. God Bless You

I don't know whether treatment would prolong my life without being a miserable burden upon my family. This is my dilemma at the time.

I must make a decision by September 10 after my next brain MRI.

Thank you again for your support.

[Liz13]

Hi Peachy, I just wanted to clarify something. We are just blessed to be diagnoised. It is so much better than walking around oblivious. I am also stage 4. I choose treatment and yes, it was the roughest 3 months of my life. But I came out the other side. I am probably at 95% of my fomer "life", but mentally and emotionally, I'm at 150%. I have learned so much about myself, and about others, too. I don't regrete a thing. I live so much more peaceful now. It takes time to get to this point, and I know this is all new to you. Do not under estimate your own strength. This is not a death sentence. You look like a beautiful woman and sound tough as nails. Give the fighting a chance and see how it goes. You can always quit later. And this is the place to fight. We can tell you what will happen and how to get through it the best. There is lots of experince here. Let us help you. Hugs from a former Jersey Girl, Liz

[ernrol]

I think that I would go for the treatment as soon as possible. As far as doctors predictions on how you will feel, he has a 50/50 chance of being right. He is either right or wrong. I would seek a second opinion on the WBR. There may be other options that could be better.

Stay positive,

Ernie

[Peachy]

You are all so wonderful. This is a wonderful forum to get advice from those who really know. You are all so brave. I hope that I can be that brave.

I will see the radiation oncologist again after my next brain MRI on September 10.

I hope that I am brave enough to make the right decision at that time, no matter what it is!

Thanks again and God bless you.

[recce101]

Wow, Peachy, that's a tough one. So you know where I'm coming from, just before logging in here this morning I spent some time on another wonderful site, onctalk.com, and posted a response describing my own preference for quality of life versus the most aggressive treatment possible:

http://onctalk.com/2007/08/19/cis-vs-ca ... mment-2175

But my choice was a subtle one between two rather similar treatment regimens, not as much of an all-or-nothing approach as yours seems to be. Only you, with the help of any family members you choose to consult, can decide what is best for you and your family. And even then, you may later second-guess your decision as things unfold. But I'm going to toss out some random thoughts -- facts, opinions, rhetorical questions -- to hopefully add a few shades of gray to your palette.

Relatively few people with adenocarcinoma are diagnosed before Stage III or IV because the cancer can progress for a long time without producing any noticeable symptoms. You mentioned a "routine chest X-ray" in 2005 which was normal, and then a "routine chest CT scan" in 2007 which led to your diagnosis. You were very fortunate that these were routine in your health care situation, because they are not standard or routine for most of us and they are not likely to be done unless there are symptoms to check out.

While Stage IV is technically incurable, treatment will probably extend survival and MAY actually improve overall quality of life. Not all Stage IVs are the same, and you may have what I would call an "early" Stage IV which is very treatable, especially if treatment is begun soon.

Side effects from chemo are for the most part temporary, and are better tolerated when one is healthy (aside from the cancer) and feeling well.

Much progress has been made in reducing chemo side effects, and these days many people complete their treatment program with no nausea, minimal interference with their normal routine, and without being a significant burden on others.

Whole brain radiation can be quite fatiguing, but it can also be very effective (I have no first-hand experience with WBR, but many others here do.)

Deferring treatment now may prevent some short-term inconvenience to family members, but that may come at a cost later.

Now please don't take offense at this, and no answer is necessary, but search deeply and ask yourself, is there some issue other than the cancer that is affecting your thinking on this question?

Regardless of what you decide, no one can say you were "wrong." My best wishes and Aloha,

Ned

[dadstimeon]

Hi Peachy--

Well as you can see by my profile not doing anything is not an option. I owe it to my family and friends to battle with everything I have. One does not know until one tries it. Can't speak for radiation never had it but can speak for (was not bad at all) chemo and for the most part I breezed thought it with only minor set backs all things considered. I'm still here and still have a life, not saying I have not slowed down because I have or that it is always fun or easy. We have had members here who chose not to have treatments and they are sadly to say no longer with us and I often wondered would they have faired better by doing treatments. We have members here (like myself) who have far outlived our prognoses by doing treatments. For me treatments was the way to go and it payed off big time. If I were you I would do far more research and even get a second or third opinion. Bottom line it's your decision and one that should be respected by all--everyone is different and looks at things differently. Hope this helps. Prayers for the best.

Rich

[Peachy]

Thanks, Ned. (I do love your nickname!)

I am in very good health other than the lung cancer. I have had no medical issues other than an appendectomy in 1969.

Your response is quite prudent, and I am grateful for it. I have begun to pose more questions to myself as a result of your query.

Thanks again.

PS - Good sense never offends me!

[wondermom]

Hi Peachy!

My mom is also stage IV. She has had mets to her liver, brain, and bones. She is doing OK with a little setback to her tailbone. She did choose to have WBR. While it did make her very fatigued for a while, that did subside and her brain mets went away completely. It was definately worthwhile for her to do this.

While we will all support whatever decision you make regarding treatment and family involvement, please consider the fact that treatment could possibly improve your quality of life. I know it has for my mom.

I know nothing of your family situation. But if you have good relationships with them, I think it would really benefit you to have their support. I also think it would be a benefit to your son to be able to have their support as well. I know I have leaned on family and friends a lot since my mom's diagnosis.

I wish you the very best and I pray for you to continue feeling well.

Jill

[sharonjo]

Hi Peachy,

I am also Stage 4 Adenocarcinoma. I was diagnosed 12/2005. My primary tumor is in my left lung and I have mets to my liver and bone (spine & L ribs). I have fought this full force with chemo, IV Vitamin C, nutritional supplements, and faith in the Lord above. I have not had many bad days, in fact I can't believe how smooth things are going for me. I too am looking for quality of life, and when the time comes that the quality is not there - then I will stop. But not one second before! I want to be here to see my children and my grandchildren grow up.

The others have already given you great advice. I would definitely get a second opinion. I hope you make the right decision for you.

God Bless,

Sharon

[wendyr]

Hello Peachy:

you have received a lot of very good advice and there is nothing further that I can add other than to tell you to weigh your options carefully. Please continue to post and let us know how you're doing and how we can help you. Good Luck & God Bless

wendyr

[dscherer]

Hello Peachy,

I am so sorry to hear that you have to make such difficult decisions. Only you know what is right for you, but please also listen to yur family.

My mom has sclc, and it has been a bumpy ride, but right now she is doing well, enjoying life, has vacations planned, looking ahead.

We always had a great relationship, but her diagnosis made it stronger. We will walk every step with her, supporting her. We take nothing for granted and feel blessed for everyday. We said many things that may not have been said and I am thankful for that. I shared my feelings and she shared hers.

I pray for strength for you as you face this decision. Include your family, they just may be your stongest supporters.

Prayers,

Dana

[beatlemike]

Hi Peachy and welcome. I really have no advice for you but I pray and hope the best for you. Mike

[teriw]

Hi Peachy,

I love your picture!

I hesitate to respond, because I don't feel qualified. Yet I feel compelled to say something. My husband had sclc. He knew something was seriously wrong a couple months prior to his diagnosis (probably even longer than that). He had been to the doctor twice (not something he would normally do). She was negligent enough not to order an x-ray. We had a vacation planned to visit family in Europe. Something we had really been looking forward to. His third trip to the doctor and subsequent diagnosis came very shortly after that. He was VERY happy to have gone on the trip. And wouldn't have traded it for anything. And he was grateful that he didn't have the diagnosis prior to the trip. But... that was only a 3-week trip. Once he was diagnosed, he fought with everything he had. And I'm grateful he did, because we shared wonderful times together and both experienced live changing events.

There are so many NSCLC survivors on this board who are so inspiring and are thriving in remission or being stable. I pray that you will become one of those.

[Connie B]

They have come upon some new treatments these days that have offered long term life to stage IV lung cancer survivors. I know a few of them very well and they are doing VERY WELL! One of them is a 7 years long term survivor and she is now not taking any treatments and she lives life just like someone who didn't have cancer. Her cancer is in remssion.

I belieive if you have good health and good energy and good family and freind support, then if it were me, I would go for it. I did all I could when I was dx.d and I'm not one bit sorry I did what I did. I'm still here 12 years later.

My family would have had my head had I kept this from them. (rightfully so) I wouldn't want any of them to do that to me. My family stood behind me, and I stood behind them. We became a team, and 12 years later we still are. Only now our team is MUCH bigger. We now advocate on behalf of lung cancer survivors.

Good luck to you.

[Tom K]

These are very personal choices that each of us have to make and there is much to consider. Stage IV cancer is not an immediate death sentence and treatment does not have to dramatically alter your quality of life. There is a school of thought that states one goal of treatment is to prolong life until a cure is found or at least until we can treat cancer as a chronic disease similar to diabetes or even HIV. Good luck to you whichever road you choose.

[Peachy]

Thank you so much. You are all so supportive and I am learning so much from you.

Yes, Tom, I can understand that one goal of treatment is to survive long enough until a cure or effective treatment for lung cancer is uncovered. However, since I have become aware that I am afflicted with this disease, and I have researched treatments and spoken to lung cancer oncologists at Sloan Kettering an other well-respected medical facilities, I have come to the conclusion that we, as lung cancer victims, have a stigma attached to us. Even though many who suffer from lung cancer have never smoked a cigarette, it appears that we are discriminated against because it is a widely accepted notion that lung cancer is brought on by smoking and that smoking was our choice. Therefore, we are solely and totally responsible for causing our disease.

Although lung cancer is the single most deadly cancer in the United States, research for this disease doesn't compare to that for breast cancer and/or prostrate cancer. The majority of funding goes to research for those cancers. Is this because those are curable cancers, or is it because those are now curable because of the funding available for research and development for those types of cancers???

Yes, I guess I have become cynical, but imagine my surprise when time after time, doctor after doctor, I received that look... that attitude... "We do what we can do, and we can possibly prolong your life, but there is no cure for your disease." Even at one of the world's leading cancer research facilities, I felt that my "data" was more important than me, or any effort to help me survive this disease. In fact I had to wait two weeks after my initial consultation for a final evaluation. It seems that they had to scan all my film (CTs, MRIs, etc.) into their system (even though they examined these films and had reports). They also had to have all pathology slides from other hospitals (no reports, but the actual slides). Also, when they finished reviewing all the materials and had possession of everything, they had nothing new to divulge and no new recommendations. They also would not return the pathology slides to the rightful hospital without much difficulty on my part.

Three years after I quit smoking, in December of 2005, I requested a chest x-ray from my doctor. He wouldn’t write a prescription for a “routine” x-ray, so I said that I was having back pain. He said that the insurance probably would not pay unless there was a reason for the x-ray.

A year later I read an article that stated chest x-ray were useless in detecting lung cancer at any curable stage, so I went back to the doctor and said I coughed up some tiny drops of blood and wanted a Chest CT. He wrote a prescription for one without contrast. I mention this because when a tumor was detected by the CT, I had to go back for another CT with contrast. Shouldn’t this doctor have known that a chest x-ray was a useless tool for cancer detection? He knew that I had been a heavy smoker. Shouldn’t he have known to prescribe a CT with contrast.? I feel that if this doctor had done the right thing, I probably would have been diagnosed in December of 2005 at an earlier and more treatable stage of lung cancer.

I think you are all "right on" when you advise that we must take an active part in our treatment. We must do the research, talk to others (this is a wonderful forum), and become proactive. We must make wise decisions about our treatment and about those who treat us.

[Robin]

My prayers are with you whatever you decide. I am at the crossroards now. I have had 6 high dose chemo treatments and it sure has affected my quality of life and trying to make the decision on stoping treatment so I can enjoy a few things in life before getting any weaker. Hugs,Robin

[Calintay]

Hi Peachy - As far as the chest x-rays finding not early enough to actually be helpful in curing the cancer it worked the complete other way for us. My mom was Dx by x-ray and is 27-months out from any treatment/surgery and is completely cancer free. I have added you to my prayers list in hopes of you finding what will work best for you and what you will be okay with. Many prayers and stay strong.

Heidi

[Peachy]

Hi Heidi,

Thank you so much for your prayers. I will pray that your mom continues to be cancer free. I'm happy that the X-Ray was a successful tool in your mom's diagnosis.

Peachy

[nonni]

Hi Peachy...

I love your picture too... ...from reading all of the posts..I think you have gotten some good advice from the people that know...

I'm sorry I don't have any for you...but you will surely be in my prayers that you make the right decision...

As far as family and friend's...I hear you...because when I was dx ..I didn't want anyone to know either...there is really nothing they can do and I didn't want anyone feeling sorry for me...I didn't want the look..."poor Pam"....no way....BUT if for any reason I needed them..I would not have hesitated to call on them....I come from a big Italian family and to keep a secret from them would be a miracle...

So the word was out immediately....Thankfully I came thru surgery wonderful and God Bless my husband and son...they were the one's that took the 'brunt'...

as I was recovering...

So I know what you are saying...but as far as treatment's only you can make the decision ...many here have went thru basically the same and are doing well...that alone would tell me something...you look to be a PRETTY and intelligent woman to make a wise decision

That being said...I will keep you in my thoughts and prayers and pray for the best..GOD BLESS YOU...hugs...Nonn

[Peachy]

Hi Nonni,

Thank you so much for your response. God bless you. I am happy that you are doing so well.

Peachy