What Should I Expect

Tmac69101
Tmac69101 Member Posts: 7
edited July 2017 in Lung Cancer #1

Hi Everyone,

I noticed your forum and wanted to reach out to you.  I am 48 years old and was just diagnosed with Squamous Cell Carcinoma.  I have a 3cm tumor in the empty space between my left lung and sternum; also, two lymphnodes showed metabolic activity near the tumor (near my sternum)  Other than that, I for some reason, have not exhibited any other symptoms...i.e. No cold sweats, fatigue, bloody muscus, no other lymphnodes showing metabolic activity or anything else except for the chest pain where the tumor is (1 to 3 pain severity).  I still play tennis 3 to 4 times a week, with no respiratory issues.  In fact, my symptoms decipate when I play

My fear is if the cancer has spread because I know that will change my stage.  I pray it was caught early enough because I complained about my chest in January but my Primary Care Physician didn't take it serious.  It wasn't until I had an allergy flare up (3 weeks ago) which made me go to the emergency room when this was discovered.  Since then, I have had a CT Scan, PET Scan and a biopsy to confirm the malignency.  

Does anyone have any thoughts about this such as the possible stages, the treatments...are there any upsides to this, like not having symptoms is a good thing.  Please advise.  I just can't get a straight answer from the doctors.  I'm sure they are thinking about malpractice, but that's not my concern.  I just want to live.  Thanks.   

Comments

  • Katmar
    Katmar Member Posts: 55
    I am not qualified to answer

    I am not qualified to answer your questions, but wanted to wish you well. I assume you had a biopsy, since that is the only definitive test for cancer? There are so many folks on here that are doing well years after diagnosis with more tumors and lymph nodes than you. Hoping someone will be along to help ease your fears.  Take care and make sure you have good doctors.

  • jorola
    jorola Member Posts: 243 Member
    edited July 2017 #3
    Staging

    Hi there,

    Your drs may be hesitant to say what stage you are as often people are restaged after further tests and/or surgery. Staging is based on size and locations, meaning if spread or not and not based on your symptoms. Lung cancer is very bad as almost all have no symptoms until late stage 3 or 4. I am linking the staging info from this site, which is excellent and easy to understand btw, for your here -

     

    https://www.cancer.org/cancer/non-small-cell-lung-cancer/detection-diagnosis-staging/staging.html

     

    Based on what you say, in my opinion and no not a med professional either, I would guess you are 2A (T1aN2M0). This can be very curative still. My hubby was stage 3b (T4N2M0) - his tumor was just over 7 cm across right in and around the bronchial tubes with 2 lymph nodes involved. Basically the cusp of stage 4 (terminal).  That was April 2014. Dec 2014 he was pronounced NED - no evidence of disease. Initially they gave him 10% chance to make it 8 months. So ya do not lose hope here.

     

  • Tmac69101
    Tmac69101 Member Posts: 7
    jorola said:

    Staging

    Hi there,

    Your drs may be hesitant to say what stage you are as often people are restaged after further tests and/or surgery. Staging is based on size and locations, meaning if spread or not and not based on your symptoms. Lung cancer is very bad as almost all have no symptoms until late stage 3 or 4. I am linking the staging info from this site, which is excellent and easy to understand btw, for your here -

     

    https://www.cancer.org/cancer/non-small-cell-lung-cancer/detection-diagnosis-staging/staging.html

     

    Based on what you say, in my opinion and no not a med professional either, I would guess you are 2A (T1aN2M0). This can be very curative still. My hubby was stage 3b (T4N2M0) - his tumor was just over 7 cm across right in and around the bronchial tubes with 2 lymph nodes involved. Basically the cusp of stage 4 (terminal).  That was April 2014. Dec 2014 he was pronounced NED - no evidence of disease. Initially they gave him 10% chance to make it 8 months. So ya do not lose hope here.

     

    Thank You so Much for your Response

    Thank you very much for your response.  Yes...I am very fearful.  I pray that God allows me to get through this and live a happy and joyous life.  This forum is amazing.  Thank you again.

  • jorola
    jorola Member Posts: 243 Member
    There also is the chatroom

    You can find the link in the redish brown box off to the left upper hand side of the screen. "CSN Chatroom" It is busiest from 8 pm to 10 pm mountain standard time so please adjust that you where you live. You are most welcome to join us there too! It is live chat and we are there to support one another. We do serious talk about cancer and share info and experiences and yes goof around as well for some good old well needed distraction. Come join us. Also share some amazing receipes.   Smile

  • Tmac69101
    Tmac69101 Member Posts: 7
    edited July 2017 #6
    jorola said:

    Staging

    Hi there,

    Your drs may be hesitant to say what stage you are as often people are restaged after further tests and/or surgery. Staging is based on size and locations, meaning if spread or not and not based on your symptoms. Lung cancer is very bad as almost all have no symptoms until late stage 3 or 4. I am linking the staging info from this site, which is excellent and easy to understand btw, for your here -

     

    https://www.cancer.org/cancer/non-small-cell-lung-cancer/detection-diagnosis-staging/staging.html

     

    Based on what you say, in my opinion and no not a med professional either, I would guess you are 2A (T1aN2M0). This can be very curative still. My hubby was stage 3b (T4N2M0) - his tumor was just over 7 cm across right in and around the bronchial tubes with 2 lymph nodes involved. Basically the cusp of stage 4 (terminal).  That was April 2014. Dec 2014 he was pronounced NED - no evidence of disease. Initially they gave him 10% chance to make it 8 months. So ya do not lose hope here.

     

    Hi Again

    Hi again, Jorola,

    I wanted to tell you how happy I am for you and your husband.  Stories like these give me so much hope.  Thank you again for your thoughts on this.

  • Tmac69101
    Tmac69101 Member Posts: 7
    jorola said:

    There also is the chatroom

    You can find the link in the redish brown box off to the left upper hand side of the screen. "CSN Chatroom" It is busiest from 8 pm to 10 pm mountain standard time so please adjust that you where you live. You are most welcome to join us there too! It is live chat and we are there to support one another. We do serious talk about cancer and share info and experiences and yes goof around as well for some good old well needed distraction. Come join us. Also share some amazing receipes.   Smile

    I most definitely will

    I most definitely will

  • Tmac69101
    Tmac69101 Member Posts: 7
    jorola said:

    Staging

    Hi there,

    Your drs may be hesitant to say what stage you are as often people are restaged after further tests and/or surgery. Staging is based on size and locations, meaning if spread or not and not based on your symptoms. Lung cancer is very bad as almost all have no symptoms until late stage 3 or 4. I am linking the staging info from this site, which is excellent and easy to understand btw, for your here -

     

    https://www.cancer.org/cancer/non-small-cell-lung-cancer/detection-diagnosis-staging/staging.html

     

    Based on what you say, in my opinion and no not a med professional either, I would guess you are 2A (T1aN2M0). This can be very curative still. My hubby was stage 3b (T4N2M0) - his tumor was just over 7 cm across right in and around the bronchial tubes with 2 lymph nodes involved. Basically the cusp of stage 4 (terminal).  That was April 2014. Dec 2014 he was pronounced NED - no evidence of disease. Initially they gave him 10% chance to make it 8 months. So ya do not lose hope here.

     

    Thank you for your Comforting Words

    Hi Jorola,

    Thank you for your comforting words.  Update:  I go for my Biopsy tomorrow.  I am very eager for the staging so that I can start treatment.  I truly hope the nodes stay on the same side of the tumor.  God bless you and your husband for what you bring to this group.  His and your stregnth give me hope during this trying time.  

  • jorola
    jorola Member Posts: 243 Member
    Tmac69101 said:

    Thank you for your Comforting Words

    Hi Jorola,

    Thank you for your comforting words.  Update:  I go for my Biopsy tomorrow.  I am very eager for the staging so that I can start treatment.  I truly hope the nodes stay on the same side of the tumor.  God bless you and your husband for what you bring to this group.  His and your stregnth give me hope during this trying time.  

    You are most welcome and here anytime

    I am only returning the favour once done for me - a stranger reaching out across this thing called the internet to give me hope and support at a time I most needed it. I am here anytime for you. You are welcome to also send me a private message.

    All the best.

  • Tmac69101
    Tmac69101 Member Posts: 7
    edited July 2017 #10
    jorola said:

    You are most welcome and here anytime

    I am only returning the favour once done for me - a stranger reaching out across this thing called the internet to give me hope and support at a time I most needed it. I am here anytime for you. You are welcome to also send me a private message.

    All the best.

    Thank you Ma'am.

    Yes Ma'am.  Things went well today.  The flared up lympnodes were closet to the tumore (yaaay).  Notice they will see if they are cancerous.  If I remember they registered like a 25 ande 27 on the pet scan.  

    Also, in the beginning (June)  they noticed a little fluid in my plurea, like 1 to 2 cm.  It was too small to biopsey.  that was last week.  So, I'll go back next week to see if it has grown enough for that.  If not, they will just monitor it.  I pray it does not grow.  God is great and bringing me through this, one step at a time, with his love and grace, with my support group like you guys and my family and friends.  Please keep me in your prayers and I will keep you in mine

  • MyPop
    MyPop Member Posts: 4
    Hi, I'm a Newbie here!  My

    Hi, I'm a Newbie here!  My FIL, who has a history of Mantle Cell Lymphoma,  was found by my husband at his Assisted living place,  after he had collapsed onto the floor and lay there for 16 hours. 911 was called and he was admitted with Pneumonia,  Sepsis, Hypothermia,  Dehydration,  Cardiomyopathy, CHF, and near death,  I just don't cant believe how he survived all of that, but then in the process of all of this, a Chest/Abdominal/ Pelvic CT, that was scheduled to follow up on his Lymphoma, was then done in the hospital,  and a Golf ball sized mass was found in his Left lower Lung, with many positive Lymph nodes, metastasize to his chest wall and into his 3rd rib bone.

     

    With all of this,  the Cancer Dr told us that he is too weak and frail to ever go through any sort of Cancer treatment,  and my FIL did not wish to, so they got him stable enough to release him to my home on Hospice.

     

    It has been a week now,  since he has been with us,  and all of his other symptoms have miraculously improved,  however he is now bedbound,  so weak that he cannot stand or walk, but looks and feels pretty good,  is eating and drinking well, is on a regular schedule of mild  narcoti pain medication, Tylenol and Senna, and the only other medicines he takes are Thyroid pills and Metformin for mild Type 2 Diabetes.

     

    The Lung mass was not biopsies, as the Pneumonia side lung had to be tapped, due to a build up of fluids,  which caused a mild collapsed lung, and he didn't feel it was nessesary,  as it is clearly a new Primary Lung Cancer, which has already metastasized to his chest wall, and 3rd rib.

     

    Now, I have no idea what to expect going forward.  How fast this will now spread further,  where to next besides his ribs, what is to come in the way of further symptoms,  or how long he will last. Does anyone have any ideas as to what we/he is up against?  I am so scared for what is to come, and I am scared to see him suffer. Right now,  things are fine, he is in good spirits, but it's still a lot of work in caring for a bedbound patient,  but how bad is this going to get,  and for how long? Any insight would be very helpful and appreciated!  Thank you,  from MyPop!

  • Katmar
    Katmar Member Posts: 55
    So sorry this has happened to

    So sorry this has happened to your FIL. Nobody can tell you what to expect or a time limit. Hospice should be able to help with your questions and they will keep him comfortable, so that he does not suffer. They are awesome in that department. Wishing you strength and peace for you and your family. Don't be afraid to call Hospice OR ask questions. They also have a respite program where someone will come and sit with your FIL so you can get out of the house for awhile. Don't be hesitant to take them up on that.

  • MyPop
    MyPop Member Posts: 4
    edited August 2017 #13
    Katmar said:

    So sorry this has happened to

    So sorry this has happened to your FIL. Nobody can tell you what to expect or a time limit. Hospice should be able to help with your questions and they will keep him comfortable, so that he does not suffer. They are awesome in that department. Wishing you strength and peace for you and your family. Don't be afraid to call Hospice OR ask questions. They also have a respite program where someone will come and sit with your FIL so you can get out of the house for awhile. Don't be hesitant to take them up on that.

    Katmar, thank you!  I have

    Katmar, thank you!  I have been the route with Hospice before,  it's just that this one is new, and I was wondering if anyone on her hands had a simular experience.  I definitely will as our Hospice Nurse, as yet we have only seen 2 different Nurses so far, it just the 1st week, and there has been so many other things to discuss, but I certainly will! Thank you for your kind words and support!  MyPop

  • Ggcool15
    Ggcool15 Member Posts: 2
    Just found out that I have 3b lung cancer

    This is so New to me and I'm afraid, don't know what to expect, going to doctor today to get treatment plan and a prognosis, was going to a smoking cessation clinic,  they did a battery of tests and found this.

     

  • starrkat
    starrkat Member Posts: 11
    edited August 2017 #15
    Ggcool15 said:

    Just found out that I have 3b lung cancer

    This is so New to me and I'm afraid, don't know what to expect, going to doctor today to get treatment plan and a prognosis, was going to a smoking cessation clinic,  they did a battery of tests and found this.

     

    I'm sorry to hear about your

    I'm sorry to hear about your diagnosis. Getting that news is about the scariest thing a person ever has to hear. You didn't say whether you have small cell (SCLC) or non-small cell (NSCLC). I'm guessing non-small cell since it's been staged as III-B. Your doctor may recommend surgery followed by chemotherapy and/or radiation. I have small cell, so no surgery, but did go through chemo and radiation at the same time. It was not fun, but you can get through it. Things happened so fast with me (appointments, tests, treatments, etc.) that I didn't have much time to be scared after awhile.

     

    When you are ready, you may want to learn more about what is going on. I typed my diagnosis into the browser and all kinds of good web sites came up.

     

    Let us know how things are going with you.

    Connie

  • ClaCla
    ClaCla Member Posts: 136 Member
    Ggcool15

    Sorry to meet you under these circumstances.  How did your meeting go with your doctor today?  Did you get a treatment plan?  There are a number of us that are right at about the same timing as you as far as cancer discovery and learning what's next.  I was diagnosed the end of last week with 3a NSCLC Squamous Cell Carcinoma.  You might consider starting a new discussion topic so that you get more response, as this one goes back a few months.

    Are you feeling better or worse after your doctor's appointment today to discuss your treatment plan?

    God bless.

     

     

  • Ggcool15
    Ggcool15 Member Posts: 2
    Had my appointment yesterday,

    Had my appointment yesterday,  did find out the cancer has not spread to the brain,  it's non small 3b lung cancer, all of the results are not in, so it maybe at least 2 weeks before I start a treatment plan, he mentioned 3, I took notes but haven't went back to read what I wrote, if one doesn't work go to the next with radiation and chemo being the last, he would not answer my questions until he gets all the results,  

  • starrkat
    starrkat Member Posts: 11
    edited August 2017 #18
    I got my diagnosis in mid

    I got my diagnosis in mid-March but didn't start chemo until April 7, about three weeks later. Like you, my doctor didn't want to say anything (except that I had some form of cancer) until after the bronchoscopy/biopsy and the tumor board had met. It's tough waiting to hear back; I tried to just stay busy w/ work and house stuff. Even with a fast growing cancer like SCLC, three weeks does not make much difference in the long run as treatment will work or it won't.

    Have to go to work now, but I will check back. Take care.

    Connie