R U NEW TO Lung Cancer?????

Portal Forums Member Updates Lung Cancer Member Updates R U NEW TO Lung Cancer?????

This topic contains 65 replies, has 19 voices, and was last updated by  laya d. 4 months, 1 week ago.

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February 16, 2013 at 3:02 pm  #1253858    

Charlie

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

February 17, 2013 at 1:25 pm  #1253889    

Maureen

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 3×2.5 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

February 17, 2013 at 3:42 pm  #1253898    

Charlie

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

February 17, 2013 at 7:12 pm  #1253902    

sts630

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

February 17, 2013 at 8:49 pm  #1253908    

Dr West

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


Howard (Jack) West, MD
Medical Oncologist

Views expressed here represent my opinion, not those of GRACE or Swedish Cancer Institute. This information does not constitute medical advice and is intended to supplement and not replace medical information provided by your doctor.

February 18, 2013 at 10:31 am  #1253918    

laya d.

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


1/10 – My Mom (58) dx w/ NSCLC-Adeno 3a; 1 cycle of neoadjuvent Carbo/Alimta before finding out EGFR+ (Ex. 19), then switched to 7 wks of neoadjuvent Tarceva/150 mg (major shrinkage); 4/10 – right pneumonectomy; 6/10 started 3 rounds of adjuvent Cis/Alimta w/ concurrent chest radiation (7 wks); 8/10 – NED; 11/10 – small nodule in left lung; 1/11 – 3 small nodules in left lung, start Tarceva/100 mg; 4/11 – suspected sclerotic met to hip, continue w/ Tarceva, add XGEVA, brain MRI clear; 9/11 – solitary 3 cm met (adeno w/ T790m mutation) to cerebellum, surgery and gamma knife, up Tarceva to 150 mg; 11/11 – 2 left lung nodules growing, biopsy on 1 shows mutation from adeno to squamous (shocker!), brain MRI clear, continue Tarceva & Xgeva; 2/12 – brain MRI clear, CT scan, remaining nodule slightly bigger – – monitor for now, Tarceva (reduced to 100 mg) & Xgeva continued; 4/12 progression and rebiopsy (confirmed adeno), stop Tarceva, switch to Carbo/Alimta; 6/12 maintenanceAlimta; 8/12 back to Tarceva; 10/12 Gemzar; 11/16 difficulty breathing; 12/12 hospice initiated…my Mom passed away peacefully on 12/19/12. Heartbroken.

February 20, 2013 at 2:47 pm  #1254026    

Maureen

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

February 20, 2013 at 3:14 pm  #1254030    

certain spring

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.


49-year-old non-smoker, dx stage IV NSCLC May 2010 (squamous tumour of the left lung with multiple brain metastases). Radiotherapy to chest and brain; progressed through two cycles carbo/gemcitabine. Repeated lung collapses; pneumonia in collapsed lung, Nov 2010; bronchial stent placed, Dec 2010. Declined second-line Taxotere. Mutation testing Feb 2011, surprise EGFR exon deletion 19. Started Tarceva (150mg), Feb 2011. Progression in liver and elsewhere, May 2013.

February 20, 2013 at 10:25 pm  #1254041    

catdander forum moderator

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

February 20, 2013 at 11:27 pm  #1254047    

Dr West

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


Howard (Jack) West, MD
Medical Oncologist

Views expressed here represent my opinion, not those of GRACE or Swedish Cancer Institute. This information does not constitute medical advice and is intended to supplement and not replace medical information provided by your doctor.

February 21, 2013 at 4:30 am  #1254051    

Maureen

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.

February 21, 2013 at 5:40 am  #1254052    

Dr West

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


Howard (Jack) West, MD
Medical Oncologist

Views expressed here represent my opinion, not those of GRACE or Swedish Cancer Institute. This information does not constitute medical advice and is intended to supplement and not replace medical information provided by your doctor.

February 24, 2013 at 2:30 pm  #1254153    

laya d.

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


1/10 – My Mom (58) dx w/ NSCLC-Adeno 3a; 1 cycle of neoadjuvent Carbo/Alimta before finding out EGFR+ (Ex. 19), then switched to 7 wks of neoadjuvent Tarceva/150 mg (major shrinkage); 4/10 – right pneumonectomy; 6/10 started 3 rounds of adjuvent Cis/Alimta w/ concurrent chest radiation (7 wks); 8/10 – NED; 11/10 – small nodule in left lung; 1/11 – 3 small nodules in left lung, start Tarceva/100 mg; 4/11 – suspected sclerotic met to hip, continue w/ Tarceva, add XGEVA, brain MRI clear; 9/11 – solitary 3 cm met (adeno w/ T790m mutation) to cerebellum, surgery and gamma knife, up Tarceva to 150 mg; 11/11 – 2 left lung nodules growing, biopsy on 1 shows mutation from adeno to squamous (shocker!), brain MRI clear, continue Tarceva & Xgeva; 2/12 – brain MRI clear, CT scan, remaining nodule slightly bigger – – monitor for now, Tarceva (reduced to 100 mg) & Xgeva continued; 4/12 progression and rebiopsy (confirmed adeno), stop Tarceva, switch to Carbo/Alimta; 6/12 maintenanceAlimta; 8/12 back to Tarceva; 10/12 Gemzar; 11/16 difficulty breathing; 12/12 hospice initiated…my Mom passed away peacefully on 12/19/12. Heartbroken.

February 24, 2013 at 3:11 pm  #1254156    

double trouble

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


09/10 CT Bil. GGO’s 12/10 L L VATS Segment Adeno/BAC Kras+ 1st Primary Stage Ib
05/11 CT L Stable RU 1.3 cm nodule, 1r & 2r LN 08/11 PET/CT L Stable, mild uptake in R nodule, LN
09/11 EBUS N1, N2 LN Adeno+ 2nd Primary Stage IIIb
10/11 Start chemorad Cisplatin 11/11 Stop chemorad 4 cis/38Gy blood counts
12/11 PET/CT FDG neg 03/12 PET/CT Stable R nodule R hilar SUV 3.4 06/12 Growth R hilar SUV 9.5
07/12 Mayo recommends thoracotomy pneumonectomy EBUS R Hilar Adeno+
08/15/12 Brain MRI Normal 2nd Opinion Duke recommends VATS pneumonectomy
09/12 PET/CT hilar growth, new R 2.2 SUV 1.5 by 2 cm Hilar LN Kras+
Duke Mediastinoscopy R Lung Unresectable, Bronchoscopy #7 LN Adeno+ ALK+
10/12 HRCT 4 RUL nodules (3new) enlarging R Hilar
12/12 PET/CT 12/19 Start Xalkori 02/13 Decreased FDG R Hilar. RUL collapsed 05/13 Stop Xalkori begin rad x10 30gy
05/13 Hospital 6 days postobstructive pneumonia, cavitary abscess, complete rad
06/13 Bronchoscopy RUL RML blocked 07/13 PET/CT Decrease in size and SUV Hilar 09/13 Decrease in size and SUV Hilar, infection resolving

February 24, 2013 at 9:31 pm  #1254160    

wadvocator

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.

February 25, 2013 at 4:53 am  #1254166    

Maureen

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 .

February 25, 2013 at 6:09 am  #1254172    

Charlie

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

March 6, 2013 at 6:04 pm  #1254523    

skyesevens54

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.
:-?

March 6, 2013 at 7:22 pm  #1254525    

Dr West

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


Howard (Jack) West, MD
Medical Oncologist

Views expressed here represent my opinion, not those of GRACE or Swedish Cancer Institute. This information does not constitute medical advice and is intended to supplement and not replace medical information provided by your doctor.

March 7, 2013 at 5:13 am  #1254527    

Charlie

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

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