Hi I'm Mary Ellen

[Mary E. Marth]

Hi I'm Mary Ellen, and I am newly diagnosed with adenocarcinoma.  I haven't been told what stage yet, but I'm assuming it's stage 4 because it's in both lungs.  I would like to talk to others who  have the same thing.

 

[Donna G]

Hello Mary Ellen.  Glad you found us.  So sorry to hear that you are having to make our journey too but am glad you found us.

Sounds like you have had a biopsy done as you already know that it is adenocarcinoma. Evidently you have not discussed a plan with the doctor as yet.  Here in the Twin Cities there are great doctors, also at the U of M and Mayo of course is also available.  My doctor I had taught at the U of M  and he was great.  His plan was great and I survived.  It was a tough journey .   I hope you have friends and family close by to help you going to doctor visits and with other things during your treatment. 

Please keep us posted on what your plan will be.  Feel free to ask questions.  We are here for you.

Donna G

[Mary E. Marth]

Hello, Yes I had a needle biopsy done 2/28 and I coughed up blood for awhile, it is 1 week and 1 day this morning & I just had a very small trace so looks like that is clearing up.  That was concerning to me although I know I heal slowly because of high blood pressure and am on med for that.  Another question would be is there any truth to what some say about an alkaline diet slowing down the cancer cells?  I read somewhere the cells grow more rapidly in an acid diet.  

I go for another CT 3/10 and see the oncologist 3/14.  I will know more then.  Yes, Donna my thought re care was where to go.  The Dr they have assigned me to looks like he's had 30 plus years experience.  Of course my friends are urging me to go to Mayo.  I don't know what to do.  I believe I am probably stage 4 since it involves both lungs.

I am so thankful you answered me and yes 3 of my children are going with me the 14th.  Thank you so much for your kind response and caring.

Mary Ellen  

[Susan Cornett]

Good morning, Mary Ellen.  I'm sorry about your diagnosis but glad you found this forum.  I have stage IV adenocarcinoma; I was diagnosed in February 2016.  Do you know if your doctor has performed any genetic testing?  If your cancer tests positive for certain mutations, doctors can consider targeted immunotherapy.  There are many on this forum who are more familiar with it.  For better or worse, I didn't have any markers.  

The initial diagnosis is scary and daunting, but if you look around here, you'll find a lot of long term survivors.  Treatment for lung cancer has improved tremendously in the last six years.  We've all been where you are and understand that your brain is probably on overload right now.  You might consider writing down your questions as you think of them so that you can ask your oncologist at your appointment on the 14th.  I keep a notebook with me and my onc now expects me to break it out at every appointment.  

Please ask us anything.  This forum is amazing.  Keep us posted.

 

[Mary E. Marth]

Thank you for your immediate reply - it means so much.  So do I ask the doctor on the 14 if he has performed any genetic testing in the past on others or on my biopsy?  I don't quite understand.

Yes, daunting is a good word.  I'm thankful I found this group and someone who understands. 

[Tom Galli]

Mary Ellen,

Welcome here.  I was diagnosed because I coughed up blood.  Indeed, it was one of the most frightening experiences in my life, but it was just over 13 years ago.  Your first take away: if I can live, so can you.

You've posed a number of questions.  Let me take them in inverse order.

The genetic testing Susan mentioned.  It means testing your biopsied sample (taken on 2/28) for the presence of certain genetic markers.  Your form of non small cell lung cancer (NSCLC) -- adenocarcinoma -- has characteristics that allow it to be susceptible to what is called targeted therapy.  (I've hyperlinked information about targeted therapy so you can review it).  So this is relatively good news, if anything about a lung cancer diagnosis can be considered good!

As for which doctor to consult with, I'd keep the appointments you've already established for a CT on 3/10 and an oncology consult on 3/14.  You are right, you will know a lot more after this scan and consultation.  The most important thing you are likely to discover is a preliminary treatment plan. Lung cancer treatments are structured into what is called a "standard of care."  A standard of care treatment has be shown to be the best available for all people diagnosed and treated with a corresponding type and stage of cancer.  The standards are numbered:  first line for first course of treatment, second line for second course of treatment and etc.  At this point, if you are not a candidate for surgery, you will likely receive first line standard of care for Stage IIIB adenocarcinoma, regardless of where you are treated. I'm postulating your stage of cancer as IIIB because of this definition.

As for your questions about diet and lung cancer, diet is an important characteristic for our general health, but no diet has been clinically shown to eliminate or moderate lung cancer.  Some patients are referred to dietitians during lung cancer treatments but these referrals are for secondary health problems or side-effect mitigation.  Diet is not a treatment method.

Now this is my opinion.  If I had children under the age of say 21, I wouldn't take them to my oncology consultation.  If I had three adult children, I'd pick the one with the best listening and note taking skills to attend the consultation.  What is necessary is "a second set of ears."  The doctor is going to try and explain your diagnosis and proposed treatment.  There will be lots of information conveyed at this first consultation.  What is important is recalling what was said.  In fact, ask your doctor if her or she would mind if you recorded the consultation using the technology on most cell phones.  That way, you can replay it to ensure you understand what was said, and then perhaps ask us to clarify the meaning or to answer your question.  We are not doctors, but we've been through the treatment process and may be able to answer your questions.

You'll have many questions as you go through this process and are most welcome to ask them.

Stay the course.

Tom

[Mary E. Marth]

Tom, I am so thankful for your quick response.  It is truly wonderful to be with others that have knowledge and a willingness to help.  I am going to take your expert advice and also another members advice about keeping a notebook.  Can you believe I searched all over the web about alkaline vs acid foods for cancer patients and found nothing.  So, thank you for that also.  I am truly most grateful. 

I am a singer and was scheduled to go to Nashville to record and now have to put it off until when I do not know.  I am wondering if I will be hoarse after treatments as that would be a problem for me, but in the scope of things that is minute at this time and I will just take things as they come.  Thank you for your response and stay well.

Mary Ellen

[CIndy0121]

Mary Ellen,

Welcome! It sounds like you have already done a bit of your own research. There is a wide range of opinions regarding diet, but, as Tom said, there's no scientific evidence that any particular diet regimen the cancer itself. I have always just gone with a very "common sense" approach to lifestyle; a sensible, healthy diet, stay as active as possible, get plenty of sleep, etc. I have the same diagnosis as you. I also have adenocarcinoma NSCLC in both lungs. They staged me at stage IV because, although it is not a particularly "distant" metastasis, it is in both lungs and I had both lungs biopsied. I started chemotherapy on the "standard of care": a platinum agent, carboplatin and paclitaxel (aka Taxol). I had four infusions, one every three weeks, then went on a maintenance drug to remain stable. I think you will learn all of this when you meet with your oncologist. Taking things as they come is an excellent strategy for many reasons. Don't worry about/question things before you know if it's something that will apply to you. Cancer diagnosis is overwhelming and treatment is unpredictable so trying to anticipate what may or may not happen is the "exercise in futility".  Please let us know what you learn on the 14h and we will continue to help with your questions.

Cindy

[LaurenH]

Hi, Mary Ellen,

Welcome to LCSC. I am happy to see that you've already connected with some of our members. Please keep us updated and feel free to ask questions. You are not alone on this journey, as this site has over 11,000 members who are here to connect with and support one another!

With gratitude,

Lauren
--
Digital Community Manager
LUNGevity Foundation

[Vicky844]

Hi Mary Ellen,

I too have just received my diagnosis on the 1st and am now getting ready to see a bunch of doctors. I went out and bought a bunch of notebooks because of the specialities I am currently dealing with. I am overwhelmed by the news and how much one must learn in order to make sure you are getting the best plan of attack.Everyone on here has proved to be positive and a great source of info. Good luck to you

Vicky844

[Lydia V]

Hello Mary,

There isn't much I can add to the responses you've already gotten. I am amazed at the amount of knowledge and support from people on this site.

I also was diagnosed with stage 4 adenocarcinoma nsclc. That was 18 months ago and the words overwhelming and daunting fit the experience perfectly. It is difficult but so important to have faith and hope at your stage. There are so many successful options for treatments.

As for keeping records, I got myself a calendar with a large area for note taking on each day. I keep track of all my symptoms and descriptions regarding how I'm feeling and write down my questions, as they come up, on the day of my appointment with Oncologist. They always want to know when something started, got worse etc. and I am not able to remember without my notes. As for keeping track of research information, I keep it all in my favorites on my tablet. That way it's only a couple finger taps away.

I wish you the very best with your journey and I'm so glad you have family for help and support.

Take care neighbor (I'm from WI, just across the border).

Lydia

[Tom Galli]

Mary Ellen,

It has been a while. How are your treatments going? Did you get to Nashville for that performance date?

Stay the course.

Tom