R U NEW TO Lung Cancer????? - 1253858

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bcharlie
R U NEW TO Lung Cancer????? - 1253858

Okay, you are a loved one has been diagnosed with Lung Cancer. Stop! Take a breath! Relax and listen! I am not an expert on LC but, I have several years of experience having it! First and foremost, do not assume that it is a "Death Sentence"!! You will find here at this site that there are many here who have been living with LC for a very long time and many who have LC and eventually die of something not related to Cancer.

Yes, it is true that you will find some here that have died from their cancer but, if you visit a site for car enthusiasts, you will find many that have died from car accidents.

LC is no fun, to be sure but, the treatments and protocols are not necessarily the nightmare that you have heard about. I believe any average person willing to fight can tolerate them. I have! Stay off of all the miriad of internet sites dealing with LC and visit sites like Grace, Inspire, and Lungevity. Here you will find everything that you need to know. There is expert opinion and years of experience here and very many compassionate and feeling people who know what you are faced with.

Congratulations on finding this site!!! Let the battle begin with many on your side.

P.S. Anyone that has had a Thoracotomy is very knowledgeable about the surgery. Anyone that has had two or more, Is an expert!!!! Feel free to contact me if I can help you prepare for surgery. I am an expert!!!!!

God Love you,
Charlie

maureenthemidwife
Reply To: R U NEW TO Lung Cancer?????

Hi Charlie, Just joined site& saw your post .I was diagnosed with nsclc adenocarcinoma ERGF + in late Oct..2012.54 yo .Non-smoker. I had brief 2 days scapula/shoulder pain, thought it was from swimming/muscular strain.I googled symptoms & went to doctor to ask him to rule out possible pulmonary embolis (PE).( I work in healthcarex 30 years as Nurse & Midwife) my symptoms went away in 2 days but my blood test for PE was elevated & my intuition told me something wasn't 'right' and to be on the safe side , I insisted & MD order cat scan.Cat scan showed NO Pe but a 3x2.5 cm mass in upper left lobe with hilar lymph node involvement confirmed with PET scan next day. I went to Sloan Kettering Cancer Centerin NYC 3 days later met oncology surgeon, did endoscopic bronchial biopsy of lymph node that was "inconclusive " so 1 week later had Cat scan guided core biopsy of lung mass, The night before Thanksgiving I got the call confirming Non-small cell adenocarcinoma with + ERGF mutation. Then saw medical oncologist for 4 rounds of chemo cisplatnum and Premetrexed evry 21 days. just finished 4th round and next plan is to do open chest Left lung resection and removal of hilar lymph nodes. On earlier PET scan there was some possible upper left lung pleural lining effected by tumor so that's why they want to do open chest verses using small scopes...so they can see better & be able to remove any suspicious tissue. My cat scan after 2nd chemo showed the tumor was responding to meds. I will be getting another cat scan on March 14 before surgery that is scheduled for March 18. My husband & I are going on a 9 day cruise to the Carribean March 4-13 to celebrate end of chemo & to try and relax before the surgery. I am a bit anxious about the surgery, although when I was a student Nurse 32 years ago the fist surgery I ever saw was a lung resection & the pt. did fine. As i am sure I will too. What's your story ? Any advice ? Please no horror stories Thanks. Hope all is well ,ThanksMaureen

bcharlie
Reply To: R U NEW TO Lung Cancer?????

Maureen,

Sorry to hear that you have Lung Cancer,

I had no symptoms when my LC was found. I had a CT of my chest done because of chest pains that I was having (heart related). A small nodule was found and I was told it was probably nothing. Six months later I had another scan done by my Cardiologist and the nodule had doubled in size and was obviously spiculated. My pulmonologist felt that it should be considered to be cancer and sent me to a Thoracic surgeon, My surgeon decided for various reasons that it should be an open thoracotomy. It was determined that I had nsclc, adenocarcinoma, stage 1a. No chemo was necessary.

I had scans every three months and a new nodule was found in my right lower lobe. My doctors followed it for several months and it seemed to be growing quickly. I had another open thoracotomy in August of last year. The nodule turned out to be another adenocarcinoma and was staged IIIb. The surgeon was able to do a wedge resection and I followed the surgery with four rounds of cisplatin and alimta, This is certainly the short version but, you get the idea.

Maureen, go on your cruise and have a good time, I will be here when you get back and help you get prepared for your surgery. The surgery is no fun and I had some complications but, and I repeat but, I did not suffer!! No horror stories either time! It is all very doable. When you are ready, give me a holler,

God Bless you and your Family.

Charlie

sts630
Reply To: R U NEW TO Lung Cancer?????

Hi Charlie and Maureen, I am new to this site. My Dad was just recently diagnosed with a 6 cm mass on his lower left lobe. We are still in the processes of all of the testing. Bronchoscopy was done on Thursday but he was bleeding a lot and dr did not get a good biopsy of the lymp node. Next step is to have a surgical biopsy to get rite to the lymps. I am sure this is going to be a long processes and I am just really looking to talk to some people who have been through this! Have you ever heard of or experienced hypertrophic pulmonary osteoartropathy (HPOA) ? Best of luck to you both through your journey!
Take care,
Sandy

Dr West
Reply To: R U NEW TO Lung Cancer?????

I was going to refer you to this link on HPOA (http://cancergrace.org/lung/2009/02/10/hpoa/#comment-9871), but I see you already found it. It's known for often responding immediately to surgery, a rare case of a patient often feeling less pain the day after surgery than the day before it.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

laya d.
Reply To: R U NEW TO Lung Cancer?????

Hi Sandy and Maureen . . . Just wanted to welcome you both to GRACE and wish you (Maureen) and your Dad (Sandy) continued luck with treatment...

Laya

maureenthemidwife
Reply To: R U NEW TO Lung Cancer?????

Layla, I am so sorry to read of your mother's long struggle with lung cancer and her passing. I am sure you miss her daily. I registered at this site to get support and encouragement as I am new to this and need help. I don't find reading unusual horror stories and non typical outcomes to be helpful or encouraging. In fact, I had been doing really well & staying strong & optimistic until I read your message....I realize you are in pain & missing your Mother, but how is her story attached to your post to me suppose to encourage me ? I became very depressed since reading your post and did not find it helpful. Maybe one should think twice before posting info. To people who are sensitive and struggling. We need to help each other in our struggles but how do you think reading about your mother's long & difficult struggle & death ....was going to help me as I am just starting this difficult journey with lung cancer...and I need all the encouragement & reassurance that things are going to work out for me.Maybe I am being selfish but I just had to let you know how it made me feel. I am so sorry for your loss and I do feel your pain. Thanks for listening.Peace

certain spring
Reply To: R U NEW TO Lung Cancer?????

Hallo Maureen. I'm sorry about your diagnosis and glad you're soon to have a holiday in the sun.
It is a convention on GRACE that people include information about themselves or the person they are looking out for. This helps the doctors in particular gain some context when they are asked to answer a question. Laya's been a member for a long time and has devoted an enormous amount of enthusiasm and energy to supporting others and spreading information about lung cancer. Her mother died very recently, and I find it admirable that she still wants to encourage other people who are recently diagnosed.
You'll find many stories on GRACE of patients who have done incredibly well, but I am sure that as a nurse you'll appreciate that outcomes and experiences vary, and not everyone has a happy story to tell. The site was intended originally as a source of good-quality online information, and that is what makes it unique. But that also means that there will be some difficult and painful information to deal with, as well as the uplifting and positive news. Best wishes for your holiday and your surgery.

catdander
Reply To: R U NEW TO Lung Cancer?????

Maureen, It is very unusual for a new member to be so upfront with disagreements with other members. Usually a new member will look and listen when she doesn't agree or like a post.
We aren't a feel good site. We are first and foremost an educational site and the more you know about lung cancer the less you like it.

Laya has been without a doubt the most encouraging, loving, and thoughtful force on Grace in the 4 years we've both been here.

I don't want to drive you away. I have an outsiders understanding of how absolutely horrifying cancer must be. So I understand you need to create your own world around which you live moment by moment. But you must understand we don't sugar coat things.

We do have some very good information about dealing with cancer. You may want to do a search, though you may need to log out depending on your browser.

Janine
forum moderator

Dr West
Reply To: R U NEW TO Lung Cancer?????

I really just want to say that Janine is right in saying that while we want to be encouraging place for everyone, this isn't a site that is primarily about unconditional positivity. There are certainly online sites that are largely geared toward hugs and blessings, but I started GRACE as a resource for people to obtain a frank assessment of the treatment options and expected outcomes of those treatments. Because cancer can be a very hard thing to deal with, sometimes the information isn't going to be that positive.

As certain spring mentioned, what was included about Laya's mother wasn't part of her comments directed to you, but rather was part of a signature that included a telegraphic version of the highlights of her mother's story, given so that people can have the relevant information to put her comments into context. And as both she and Janine noted, Laya is an unfailingly sweet, positive, and encouraging person. The last thing she would want to do is deliberately dishearten someone. But her actual comment to you was just the warm welcome and wishing you and your father luck.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

maureenthemidwife
Reply To: R U NEW TO Lung Cancer?????

Please forgive me as I am very sorry and did not realize how this site was set up or how info. was shared. I did not realize that one's profile would be attached to their comments automatically. Therefore I misunderstood Layla 's message and the good intentions she had towards me. Thank you for caring. I am very sorry to have voiced my disappointment/misunderstanding of her message. This was also the first time I publically vented about being upset in having cancer. I did not realize how the site/forum worked and I apologize for any negativity I may have brought to it. I was just so upset & shocked to read what Layla's Mom went through...May she rest in Peace.I am forever sorry.

Dr West
Reply To: R U NEW TO Lung Cancer?????

I think everyone here can understand your frustration that led to your need to vent -- all of this is very frustrating and even maddening.

Please feel welcome to ask questions and share your frustrations as well as any good news (there's plenty of that here, too), just with an understanding that sometimes the honest comments won't be unfailingly positive.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

laya d.
Reply To: R U NEW TO Lung Cancer?????

Hi Maureen - -

No offense taken at all. . .and, to be quite honest, since my Mom's passing I actually had thought about my forum signature and how "newbies" to the site may feel when they see it -- especially when I'm trying to offer encouragement. I have left it as is because it's our story and I can't change it to make it have a different outcome (I wish I could). But, what you have to remember is that with cancer, no two stories and no two patients are alike. There are a lot of great and novel new treatments coming down the pike, and my wish is that lung cancer - - if not outright done-away-with - - will one day become just another chronic illness managed by effective therapies.

Again, I'm sorry that my forum signature caused you added stress when you thought it was directed at you. It certainly can be confusing. And, good luck with your upcoming treatment. Please do keep us posted. . .and please ask away with any and all questions that you may have.

All My Best,
Laya

double trouble
Reply To: R U NEW TO Lung Cancer?????

Maureen,

I too, am sorry that you thought Laya's signature was part of her message. Most of us include a signature showing what we have been through while living with cancer.

Unfortunately, Laya's story is not really an "unusual horror story" nor is it a "non typical outcome" for a lung cancer patient. We celebrate treatment successes with each other, and we go through the many losses of life together that come with this disease. We have lost a lot of members, but what makes GRACE different from other forums is that it is moderated, and there are many doctors who are committed to providing us with real time information that helps us learn as much as we can about our disease.

We aren't left to frail about in a sea of mis-information and the fear that goes with it. We don't always get the answer we want, but we do get the truth here. I've seen many posts that started with a warning that what was to follow was not for the "faint of heart." So, yes you will get help and encouragement here, but you won't find any false hope. Lung cancer is deadly, the treatments can be brutal, and the outcome is more often fatal than not.

Living with lung cancer takes a whole lot of courage. The members of GRACE have an extraordinary amount of that and then some, and we hope you will become more informed and stronger for having joined us. I'm sorry you have cancer. I really am. And I hope you are one of the lucky ones who is cured. We will celebrate with you either way, because you will find there is much to be grateful for, no matter what twists and turns your journey with cancer takes. Best of luck to you.

Debra

wadvocator
Reply To: R U NEW TO Lung Cancer?????

Hi Maureen,

I understand where you are coming from about the stress of reading other's journey vs. encouragement. I am a caretaker and I usually review the site behind the scene. I sent a question about a month ago about the additional stress I felt in reading others' courageous journey and yet not reading much about overwhelming number of folks who has the medical condition and yet live a normal life for a long time. I asked for advice on how to deal with the stress and didn't get much advice but did received good perspectives from many kind Gracers. So my decided actions might be helpful to you. When I do my regular visits to GRACE, I focus on listening and watching the educational materials and only visit the FORUM TOPIC section once in a while and offer something that might be of use to others. For my psychic, emotion, and spirit.....I made this change. Going through this also help me to empathize with the oncologists better. I am imagining it must also be tough on them to develop somewhat of an online relationship with Gracers and can only help people win their battles but not yet able to help them win the war.

maureenthemidwife
Reply To: R U NEW TO Lung Cancer?????

Good morning, Thanks everyone for the advice, support and encouragement. Layla, you sound like such a sweet & caring person. I am sure your Mother was Blessed to have you as her daughter. Again, I am so sorry for the misunderstanding about how this site/forum worked....the initial draw for me was the title "R U NEW to lung cancer ? ? ?". I assumed it was a support forum for "newbies" like me. Oh well, I am still glad I discovered GRACE and I appreciate all the educational info this site provides . Also Thank you Dr.West for all you do at GRACE. Your patients are lucky to have you as their provider. Keep up the good work ! Have a Great day ! I'll keep you posted about my journey .

bcharlie
Reply To: R U NEW TO Lung Cancer?????

I am really sorry that my post sparked so much controversy. GRACE has been such a blessing to me I wanted to share a little of my perspective and the main thing I wanted to share was a message of hope. I wanted people new to LC to know that they do have the inner strength to face what they must surely face.

Each of us faces adversity in a different manner and we can look at the same information and get a different interpretation. I look at the posts here at GRACE and I don't worry about the surgeries and treatments I just see the hope for cure that lies behind it all.

I think that LC is not unlike many other challenges that we face in life, some we can overcome and some we can't. I certainly don't try to push my faith on anyone else, I just want to tell my story. Stage IIIB LC doesn't offer me a tremendous amount of hope for a cure but, through it all my relationship with God has been made stronger and regardless of my condition, I am a pretty happy guy. We have very little control over what happens to us but complete control of our attitude towards it.

P.S. My historical tag would have been on my post also but, for some reason it does not show up anymore.

Charlie

skyesevens54
Reply To: R U NEW TO Lung Cancer?????

Hi everyone;the brave ones, the hopeful ones and the realists.
I am so new to all this that I have not even been diagnosed yet. I had a fall and injured my shoulder at work!!.Subsequently I developed pneumonia for about the 5th time in 4yrs. That is when they found a "nodule"in my right lung. I was rushed to have a CT scan and they found a 3cm cyst and a 1.95 nodule top and bottom of cyst. The cyst also looks suspicious. Had a PET scan and lit up cysts , nodules and lymph nodes in chest.Yes, I am scared. Biopsy was attempted but apparently I have ribs and a scapula! And they were in the way;which made it impossible to do the biopsy.
So now I have gone to see a thoracic surgeon ; He explained that I will be having a bronchoscopy,and they will also do an incision at base of throat and have a look inside. He said that if the lymph nodes are positive then I have stage 3 lung cancer and we will start chemo and radiation right away.If lymph nodes are negative then within a month they will take out the cyst and nodules.
I am by no means a forthright person ; So when I hear "if you fight" you will be okay.How do I fight?? Yes, I have the will to survive and I will do what is asked of me- but fight , sorry don't know how; do I get mad at the cancer , if I am diagnosed?? I smoke;I knew ,from research in recent years that I pretty well painted my own picture how then can I be mad at a self-inflicted disease.??
I am scared; don't like pain.I am scared more for what I have done to family and friends that are on this journey with me.
Thank you for letting me read your questions and answers they are absorbed and reflected upon.I admire each and every one of you.
:-?

Dr West
Reply To: R U NEW TO Lung Cancer?????

First, as I think you know, these questionable findings aren't the same thing as a cancer diagnosis, even if they're concerning: you don't have cancer until a biopsy proves cancer.

In the event that you do have cancer, I'll say that I have never used the terminology "if you fight"...and I think that's not the best phrasing to use. I agree it doesn't make a lot of sense, and it also implies that you have a lot of control. While it may be comforting to think that you can control the situation, that also puts a lot of responsibility on you and implies that if things don't go well, it might be because you didn't fight hard enough. In truth, however, the cancer's biology, which is something that neither you nor any doctor can control, has a much bigger impact on your outcome than almost any other variable. Yes, you can opt against conventional treatment and consign yourself to the uncontested effects of the cancer, but accepting treatment provides a possibility of a much better result, though with plenty of uncertainty. I think the key issue, though, is that even if things don't go well, it won't be for a lack of effort on your part. There are simply some fights that aren't fair, some wars that aren't winnable. It wouldn't be a shortcoming on your part if things don't go well. The treatments might fail you, but you won't have failed.

For now, though, I think it's most important to determine what you're dealing with and then follow the best plan. If it's cancer, there will be uncontrollable aspects, so you just do the best that you can do.

Good luck.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

bcharlie
Reply To: R U NEW TO Lung Cancer?????

There are many of us dealing with Cancer that use the term "Fight". I know that when I use that term, I mean the following: 1. Learn not to be consumed about "What if's". Wait until you KNOW what you are dealing with.
2. Once you know what you are faced with, Learn everything you can about it. Knowledge is power and you can help make decisions about what to do. It gives you more sense of control. 3. You will have a lot of unpleasant things to deal with but, I promise that you can do it! Go on and live as normal a life as your illness will allow!! Don't let your Cancer be what defines you. I have been dealing with LC for two (2) years now and it may yet beat me but, in the meantime "I am Living". Lung Cancer is not an Automatic Death Sentence!!!

Smoking!!!!! Smoking is bad for you in many ways but, 60,000 people a year get Lung Cancer that did not smoke. Maybe the Smoking caused it maybe it didn.t. You don't deserve Cancer no matter how you got it.

Everytime you meet someone new and they learn of your Cancer, the first thing they will ask is, "Did you smoke?" Lie, tell them no if you want! It is none of their business. It would be like asking someone with Diabetes, "Oh, did you over eat?" "You were in a car accident?", Oh, you must be a bad driver. You did not Deserve Cancer! and quit dwelling on how you got it!!!

Just thoughts that work for me.

Charlie

follansbee
Reply To: R U NEW TO Lung Cancer?????

Good thoughts, Charlie. I especially liked your advice to smokers and ex-smokers.

follansbee :-P

catdander
Reply To: R U NEW TO Lung Cancer?????

skyesevens54, I certainly hope you do not have cancer. Either way I wanted to share this link I just dredged up for another thread. I hate that you are placing blame on yourself. It's not helpful to anyone. Read this. http://cancergrace.org/lung/2008/10/02/paul-newman-2/
Hoping for the best,
Janine

huiyuan49
Reply To: R U NEW TO Lung Cancer?????

Maureen,

I told a story here at the Grace a month ago that my cousin had lung cancer, which spread to his eye. His doctor took the tumor from his eye but did not operate on his lung. He told he had several requests to operate on his lung. He firmly turned them down. His doctor thought he had six months to live.

He had 7 chemos in a row and then 10 years of Iressa. The first 6 years one pill a day, and after that he had a lower dosage. After 10 years he is still working part time in China

To have a surgery or not, is a big decision. Have you talked to any radiology doctor?

skyesevens54
Reply To: R U NEW TO Lung Cancer?????

I thank you all for your wonderful, encouraging words.It did take a load off me to know that I don't have to go into all this(if I am diagnosed) with a battle minded intention.
Charlie , I thankyou for relieving me of the burden that I have caused this;I will do as much research as I can.
I will keep you all updated ; procedure will be done on the 20th.
Thank you again.
:cry: I feel for all of you.

skyesevens54
Reply To: R U NEW TO Lung Cancer?????

Hi Everyone;Whew it's been a long haul!!
Lots of waiting, etc.
I really want to thank all of you for your answers to me; I am grateful and did say thankyou but it was from my phone and apparently went elsewhere.

I did have the bronchoscopy and the mediastinoscopy; it was painless, and the whole team was great!! Lymph nodes in chest are negative YYAAAAYY!. But the cyst and nodules couldn't be reached . So.. My surgeon decided because they were in such an awkward spot; deep in my upper rt lobe, that it would be best to have another CT scan and measure; but also schedule surgery April 10th and if measurements are good then we can just cancel.
I just got the measurements today ; Cyst had been 3cm ; is now 3.5, nodules were 1.96 are now 2.5. I couldnt get hold of surgeon but GP and Nurse coordinator for my surgeon said with these numbers it will probably be a go for the surgery. So now this is where my life changes.; They will do biopsy while I am on the table and surgeon says they should know within 20 min if it is positive/negative for cancer.
Please wish me luck . I will let all of you know what is going on after I come home.
Thank you once again. :?:

Dr West
Reply To: R U NEW TO Lung Cancer?????

We wish you the best of luck, and if it's cancer, we'll be happy to help you understand and help navigate the options as you proceed through everything.

Good luck,
Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

marisa93
Reply To: R U NEW TO Lung Cancer?????

Wishing you loads of good luck!

Lisa

bcharlie
Reply To: R U NEW TO Lung Cancer?????

I wish you all the "Luck" in the World. I wish for you "Skilled Doctors and Nurses". I will keep you in my prayers.

Surgery of any kind is never pleasant and Lung surgery is tough but, based on my experience you will not suffer. There are now many great pain medications (Delaudid) and anti-nausea medications (Emend) to keep you as comfortable as possible. Hang in there and keep your chin up. Many of us have faced what your are facing and even if the diagnosis is "Cancer" there is a world of treatment for you.

With Love,

Charlie

cards7up
Reply To: R U NEW TO Lung Cancer?????

Will your surgery be VATS? Take care, Judy

double trouble
Reply To: R U NEW TO Lung Cancer?????

Good Luck! Walk as soon as you can, as much as you can, take something to prevent constipation (from pain killers... the nurses will tell you what to use), and use your spirometer! You'll get through it and soon it will just be a distant memory.
Debra

laya d.
Reply To: R U NEW TO Lung Cancer?????

GOOOOOOOOOOOOD LUUUUUUUUUUUUCCCCCKKKKKKKKK!!!!

Laya

skyesevens54
Reply To: R U NEW TO Lung Cancer?????

Hi Everyone; Hope all is well.
It has been 15 days since my invasive biopsy? I think that is correct? I am officially a Cancer patient. They checked all; and all lymph nodes are clear!! Yaay ; but the cyst -3.5cm and the nodules -2.25 both had adeno carcinoma. Surgeon is hoping he got all of it. So do I :lol: It's been 10 days of waiting and waiting; naively;you see no one had come up to ME and said Yes it is Cancer. I heard it secondhand from family that it had looked like cancer therefore my whole right upper lobe was removed. It finally sank in that YES I have cancer (or did have cancer the day I saw my wonderful GP and she gave me the name Adenocarcinoma. It just brought home what I had been denying.
So , this is my update. I do see my surgeon May 9th and then I will find out exactly why I have such pain in my back (only when I move or breathe) :roll: !! Or why I am hearing clicking coming from inside my body ;yes, clicking . Also I did go home with a partially collapsed lung is that why I sound like Darth Vadar when I breathe. LOL It's embarassing but everyone assures me they can't hear it. Oh good. :oops: I am sure any follow up treatment will be brought up then as well. I did go for a walk yesterday and today!! Which is a big deal for me because I have 21 stairs to climb up and down before and after walk! Yaaay Me!
Thank you for all your wonderful wishes. Hope to hear from you, it is very reassuring when I do .
:lol: Vera

laya d.
Reply To: R U NEW TO Lung Cancer?????

Vera:

So glad that this cancer nonsense hopefully is behind you. And best of luck with your recovery. I hope that it is super speedy!

Laya

Dr West
Reply To: R U NEW TO Lung Cancer?????

I'm glad the surgery is behind you, and you should expect that the problems you're noting now are very likely to improve/resolve over the next few days and weeks.

You should also expect that your follow-up visit should include a discussion of whether any post-operative treatment is recommended or whether the findings are favorable enough that no further treatment is recommended. It's hard to know from what you're relaying what you might expect, but that should be clarified in your follow-up visit(s).

Good luck!

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

Dr West
Reply To: R U NEW TO Lung Cancer?????

I'm glad the surgery is behind you, and you should expect that the problems you're noting now are very likely to improve/resolve over the next few days and weeks.

You should also expect that your follow-up visit should include a discussion of whether any post-operative treatment is recommended or whether the findings are favorable enough that no further treatment is recommended. It's hard to know from what you're relaying what you might expect, but that should be clarified in your follow-up visit(s).

Good luck!

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

mikem
Reply To: R U NEW TO Lung Cancer?????

Hi Vera,

I hope you recovery goes well. It sounds like you have been in good hands. Just to let you know, you are not alone on the clicking. I have had that since my surgery. It is off and on and seems to be positional. When I move certain ways I hear it and then when I shift it stops. It is less now than it used to be, or I have just gotten used to it. Either way it hasn't bothered me. I did bring it up to one of my doctors and got blank stares so I don't think it is anything to be concerned about. Things get moved around when they do surgery so who knows, maybe it is just a pulsating vein or artery against something. If they do figure it out let me know. I hope all of this is behind you very quickly -- mikem

skyesevens54
Reply To: R U NEW TO Lung Cancer?????

Thank you to all of you for answering. :) mikem thankyou for the reassurance about the clicking; thought I was going crazy :wink: .Layla I do hope it is all behind me ; all I want to do is get back to work;lol. My residents need me as I do them.

danajones
Reply To: R U NEW TO Lung Cancer?????

Hello,
My name is Dana and I was searching for information on lung cancer with mets to adrenal gland and stumbled upon this site. I am encouraged in reading all of your posts. My good friend, a person who is like a mother to me has just had her PET scan and we are traveling down this road together. She has three daughter all of whom I work with in the same medical center. We are all Nurses. I am an ER nurse and not too familiar with the treatment of cancer other then the complications. I have found though it is better to deal with this news as a layperson then a nurse. My friend liz is scheduled for a hip replacement. All of these arrangements were made prior to the secondary diagnosis. The Drs. State she can go ahead with the hip and then deal with the new diagnosis after. They should be calling her this week to schedule a biopsy. Hopefully I will be off of work and able to go to that appointment. My concern is that they are putting the hip replacement first. She sees it as a very optimistic development because as she put it why would they waste putting a hip in a very sick person. I just wanted to see if anyone else had an experience like this and should I be concerned about delaying treatment for the hip? She is in pain from the hip and has waited for several years to have it done so this is her main concern. I have been doing well by visiting everyday and keeping her company and Scrapbooking with her, something we both enjoy. Oh and she lost her husband a year ago. Any comments are appreciated. Thank you all so much in advance.

Dana

Dr West
Reply To: R U NEW TO Lung Cancer?????

I'm sorry about your friend's diagnosis.

You're right that the recommendation to proceed with the hip replacement implies that they think her prognosis is favorable enough to do that surgery, and also that there would be no serious consequence to waiting at least a few weeks and perhaps a couple of months before addressing the cancer. That's likely to be the case for an early lung cancer that appears to be stage I or II, but we would likely step back and re-prioritize if it looked like there was stage III or IV lung cancer, which would have a pretty high risk of worsening to a problematic point if it goes untreated for another 6 weeks or longer. I think it's fair to clarify whether it appears to be just a solitary lung nodule (in which case delaying 6-12 weeks is not likely to change the overall prognosis or treatment options) or more advanced disease (in which there's a higher risk that complications could develop in that time)... there's always a chance that the recommendation is to proceed with surgery just because someone has tunnel vision about the surgery.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

kathy1944
Reply To: R U NEW TO Lung Cancer?????

Hi Charlie

This is my first posting, although I have been reading lots of info on this site for the last few months. I was dx in Jan with Stage 4 NSCLC. Since then my goal has been to gather as much information as I can about this type of cancer and about EGFR mutations. I have gotten a lot of info from this site and also from inspire. I read all of the technical articles I can get ahold of. At first I hardly understood any of it, but gradually I am finding out I understand more and more. And the more I learn the less I fear all of this.

I think I am a very positive person. No tears for me. I can't help that this is the hand I was dealt, but I sure can control how I play it. Went on a 3 week vacation in March to Australia and New Zealand and leaving in a week for East Coast and on to England. As long as I can go, I will. I am just so lucky in that I have learned to deal with the Tarceva side effects and since other than those, I feel perfectly fine, I can more or less live a normal life.

I really work hard at not letting cancer take over my life. I am very upfront with family and friends about the fact that I have cancer (and yes I MAKE them say the word) and I keep them updated on my progress, but I won't let it become the focus of all of my relationships. Besides since I have no scans until Mid-July, cancer has been wrapped up and put in the closet till then. Last Friday night went out with 3 other couples and my cancer was not even mentioned once. We were having too much fun laughing about other things.

So anyway I am really just saying hello and also saying thank you to all that post such great information on this site. I especially love the webinars.

Kathy

bcharlie
Reply To: R U NEW TO Lung Cancer?????

Kathy,

I am going to give you the obligatory, "Sorry that you have Cancer" but, very happy to hear of your great attitude! I have often had people comment to me about how brave I am and what a great attitude have. I always say, "I can roll over and die or keep living". I choose to live! I am not stupid and I know I have a dangerous and sometimes deadly disease but I am going to live up until my last breath. Does that make any sense??

I am very happy that you can afford to travel and enjoy yourself and I truly mean it. It is just one of my pet peaves that so many of us with the Big "C" can't even afford treatment much less the opportunity to travel and enjoy life. I would love to be able to raise money to fight Lung Cancer but, even more I would love to be able to raise money for those that can't afford the treatments that are currently available. I would love to have the money to give everyone with incurable Cancer the peace of mind to be able to enjoy life without the worry of how they were going to pay for Chemo at $15,000.00 a pop when they can't even afford to pay electricity.

Charlie

JimC
Reply To: R U NEW TO Lung Cancer?????

Hi Kathy,

Welcome to GRACE. I think your attitude is terrific, and I'm glad to hear that you are managing your Tarceva symptoms well. Continue to enjoy life and let us know if you have any questions.

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

Dr West
Reply To: R U NEW TO Lung Cancer?????

Thanks very much, and I also want to add that your great attitude is very encouraging to me and I'm sure others here.

-Jack

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

kathy1944
Reply To: R U NEW TO Lung Cancer?????

Thanks to all for the great welcome.

Charlie: My first dx was with the brain tumor. At that time the neurologist said "you don't seem to be very upset" and my comment was "if I cry and roll around on the floor will it go away?", which I think rather surprised her. In Jan when I went for my first visit with my onc I had already done a lot of research. When he said that I had a mass in my life lung my response to him was "ok so that means its stage 4, and it can't be cured, so what't the plan from here? Since then I always go to my visits with a whole written list of questions. Yes, I definitely appreciate how lucky I am to be able to travel. I worked for 50 years and just retired last year. When I was dx, I decided that someday was here.

Jim: I have worked very hard to aggressively handle the side effects. I have had (and will continue to have) most of them, but I have learned to listen to my body and treat them the minute they start. Sort of like playing "whack a mole". The hardest thing for me was that I have rhumatoid arthritis and I had to go off methotrexate, so suffer from some joint stiffness.

Kathy

JimC
Reply To: R U NEW TO Lung Cancer?????

Kathy,

I should have mentioned that if you do have any skin issues that arise with Tarceva you may find the presentation by Dr. Mario Lacouture helpful: http://cancergrace.org/cancer-treatments/2011/09/08/dr-mario-lacouture-o... He was my wife's dermatologist when he was still in Chicago (he's at Sloan-Kettering in New York now), and he's the man when it comes to Tarceva skin issues and their management. He's been very creative in finding solutions to these problems.

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

kathy1944
Reply To: R U NEW TO Lung Cancer?????

Jim:

Thank you for the link to Dr. Lacouture's podcast. It was very informative.

I have had on-going issues with the toes/fingers. Last week someone recommended a product called O'Keefe's Working Hands Cream, which is sold at Lowe's. I am on my fourth day of using it and I am amazed at the difference in my finger tips. All those sore areas on the edges of the nails, are starting to go back to normal.

I have been lucky with the rash and I think it is partially due to the moisturizer that I use (Lancome Absolu Precious Cells with Sunscreen). I have not gotten any rash on my face or neck (although sometimes I can feel it just under the skin and immediately treat with hydrocortisone. When I do get the rash, it tends to be more on my arms, ankles, inner thighs and under my breasts. Sometimes it comes with a vengeance, but if I use Clindomycin, it is usually gone in 4 hours.

My most frustratiing side effect is the mutant werewolf hair on my face that started about a month ago. Seemed in the period of a week my eyebrows turned into brillo pads and I started a mustache, which might be fine if I were a male! Tried depilatory, but that did break out my face. So have resorted to nightly plucking sessions.

But all of the above aside, I am grateful everyday for Tarceva!

Kathy

certain spring
Reply To: R U NEW TO Lung Cancer?????

I agree about Working Hands - it's very good. Keep an eye on your toes as well, absurd as it may sound. I got nasty staph infections in my toes and did not realise what was happening until it was too late.
Someone else posted about the facial hair problem:
http://cancergrace.org/topic/excess-facial-hair-and-tarceva
Enjoy your holiday....

skyesevens54
Reply To: R U NEW TO Lung Cancer?????

Hi All ;
Had my follow up with surgeon; he says he got it all!! No Chemo, No Radiation! Will do 3mos checkups then slowly go to 6mos etc. He is a little concerned about my voice changing and sounding like Darth Vadar;he will keep an eye on it.
I am taking a lot of walks ;my stamina is not as it used to be of course.; and this worries me about going back to work. I am a PSW and I do lifting and helping my residents dress,etc lots of bending and supporting. Have any of you gone back to work after losing part of your lung? Has it affected your work??
Once again I thank you all for your wonderful support and your kind words. May you All be painfree and well.

Dr West
Reply To: R U NEW TO Lung Cancer?????

Congratulations on getting through the surgery. I have many patients who have returned to work, many without any real limitations in their activities, but it completely depends on

1) their lung function before they underwent surgery,
2) the surgery that was required, and
3) the physical demands of their work.

For these reasons, it's a very individualized experience for patients.

Good luck.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

laya d.
Reply To: R U NEW TO Lung Cancer?????

Yayyyyy!

skyesevens54
Reply To: R U NEW TO Lung Cancer?????

update ; Frustrated
after my first xray after surgery ; one month later the surgeon and my GP both mentioned they sawspot. The technician had been concerned about it; saying it looked exactly what I just got rid of. My surgeon said it could be just scarring and would watch it. This is new to me; I'm very naive; even stupidly so ; I took his word for it.
When we saw him this time I was in extreme pain and he could see I was tired of it. He checked my scars and went through my notes; he said the xray this time showed a few spots that they were concerned about were now gone (I had only heard of one last time) and were probably due to scarring-except for the one that he said was stable.
My surgeon is part of a team at the Grand River Cancer Clinic in Kitchener, Ont. Canada it includes him , technicians and oncologists.
When all this started they tried to biopsy my nodules and discovered I had ribs and scapula !!!! Therefore they couldn't get to it -Wow!! my mouth dropped. This was in Guelph where I live.
So the surgeon decided to do a medianstinoscopy and bronchoscopy; All lymph nodes were clear BUT he couldn't reach the 3.25 cm nodule ;this nodule also had 2 others top and bottom of it 1.9cm.
That is why the VATS in the first place.
I am a little discouraged - first of all how dare no one tell me that a rib had to be cut!! and that my scar was longer ; I was a mess because I was questioning my pain; my goodness I was getting the rolled eyes from family and friends because a VATS is not supposed to be painful.!!!!
I will be getting a CAT scan which really relieved me; I am in pain. It goes from my upper back right down to bottom of shoulder blade feels like 2 pcs of raw meat rubbing on a nerve that has no protection. It nauseates me when it comes.It then goes around my armpit (burning) over to chest wall; pulls like crazy,then to top rib and ends in to the rt of breast bone.
Yes am medicated ; started with percs ; off those and am now on 6mg of morphcontin's 2x.

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