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Please help advise, very scared

Prayingin17
Posts: 5
Joined: Mar 2017

Posts: 1
Joined: Mar 2017

I'm hoping to find help bc I'm not sure the outcome will be good. I had a Ct done via ER bc my d-diner was high in Decembe.No clots but nodules were found (6,5,4 mm respectivel). So I went to see pulmonologist and he didn't think much of it and said he could tell me not to worry but he really didn't think it was anything to worry about.Also told me that he would repeat Ct in September. I was fine with that, then I was out of town and I thought I had low blood pressure bc I felt like I was going to black out more than once and went to an ER to get checked out bc I was having some chest fluttering in the past few weeks so they did a Ct and the ER doc told me I had a modular that was 8 cm and he could admit me and then I could have pet scan and possibly a bronchoscope and I said I'd go to my Dr.That was 3 weeks ago and the radiologist has had my disk to read and compare so I was upse. The Pulmonologist called this am and was so serious (He is supposed to be the best)and told me he wants to do a pet scan then explained everything about it and asked if I understood then asked me if I had any questions.I was in shock I believe bc I could only say well I hope we found it early and just take it out! How dumb on my part. Of course I wanted to know lots! Will I die, will I be sick, in pain, etc. so now what? How am I supposed to function with all this and is it curable, will I be a burden on my kids, I'm divorced for 8 years and live alone.i don't want to make my kids take care of me. I'm in college at my age bc I had to start over so any advice please! 

thunderrgd
Posts: 2
Joined: Mar 2017

Prayingin17,

I just joined this site, looking for additional information and came across your post.  I'm not all that knowledgeable about NSCLC (my type) but I've gone through what you're describing and can offer what little I've infor I've gained. 

 

Like you, I live alone...divorced 3 years and don't want to be a burden on my family or friends, so I keep quiet about most of it.  I suppose we all feel that sense of terror when handed that diagnosis.  My was caught "too late" or so the Oncologist told me.  Stage 3A, spread to 11 of 13 lymph nodes.  Based on how advanced mine was upon discovery and the subsequent lower left lobectomy, I chosed not to treat it with chemo nor radiation.  But that's me.  I'm a Veteran and the V.A. handled everything from discovery, to surgery and follow-up.  The oncologist advised me against treatment.  Yes, sort of shocked me too.  His rationale was that the 5 year survival rate for me was about 20% and that the best chemo and radiation treatment would only increase that by a paltry 5% more.   He advised me that if I treated it, I would be very sick and incapacited for large sections of time, with no discernable benefit guarantee.  All of that I say to left you know where I'm "coming from".  I'm in my 50's, relatively healthy excepting the NSCLC, have lived a most remarkable life and will "go out" on God's schedule.  It suits me.  Now you. 

The PET scan will be proceeded by an injection that will "light up" the tumor if it is "reactive".  Even then it won't tell you if it's malignant, but merely the location and sizes of the various tumors.  I suppose next they'll do a biopsy, either of the needle biopsy sort, or surgical.  Then you'll know. 

I had my surgery 14 months ago.  A recent CT scan showed suspicious "nodules" in my right lung now.  But I was told they are too small to even biopsy at this point, so they'll check again in May 2017 with another scan to see if it's grown.  Having said that, I can tell you I'm not in any particular pain.  We had a break in the weather and I played a full 18 holes of golf with no difficulty.  I've noticed a shortness of breath upon moving from a resting position to activity, but nothing more dreadful than that.  A bit of a nagging cough is beginning, well actually started a couple of months ago, but is it the cancer or the changing seasons? 

The only advice I feel comfortable giving you is don't let it rule your life.  In reality, they'll probably go in and remove a portion of your lung.  You'll recover from that (you won't intitially think you will, but you will) and life will go on.  One thing I did, and it was just because of not wanting to be a burden myself on others, was to go ahead an take care of my "final disposition".  When I go, a phone call will be made, they'll come and get me and that's that.  Please don't assume I have a cavalier attitude about it...I don't.  But when my world was spinning out of control, that was the only thing I knew I could control to my satisfaction.  Remarkably it did provide me was a sense of relief, of a sort.  Since I am alone as well, I contacted  the local Hospice organiztion and after a few mis-steps have began making those arrangements as well.  The offer pallative care and will send a nurse to your home to offer only what assistance you may need at the time, with it ever expanding as the need demands.  I would recommend you check into those initial steps, AFTER you have a diagnosis.  God willing, you may have caught yours early enough to render all of my dire words unnecessary.  I pray so.

Live your life as fully as you wish, do as you will when you will.  I wish you well.

Thunderrgd

TigerJ52
Posts: 7
Joined: Mar 2017

I learned 6 weeks ago I have lung cancer (adenocarcinoma Stage 2a).  This was very much a shock to me as I am a life long non-smoker.  I've had a lobectomy (at the same time I was diagnosed via surgical biopsy.  I have to admit it's pretty scarey lnowing the medical profession doesn't talk in terms of a cure for this type of cancer even in early stages like mine, only length of survival.  In the end, there is no choice but to go forward.  The only choice is how to do it.  I have made up my mind I am going to fight for every minute of life.  I'm waiting for my appointment with the oncologist, frustrated that the office has postponed it 3 times.  Whether it's chemo or immunotherapy or whatever, I want to get on with it.  My daughter, an oncology nurse, suggested frankincence oil as something I could use in the mean time.  I am taking a small amount internally and using it as a skin rub, not as a substitute for more conventional treatment, but as a complement.   Supposedly, it has shown anti-cancer properties.  I also have literally hundreds of people praying for me, and quite possibly thousands.  I know it's OK to shed tears and admit to fear, but then it's time to move forward and resolve to do whatever it takes to win this battle.  I'm praying for you, Praying17.  We can do this!

Prayingin17
Posts: 5
Joined: Mar 2017

Where do I get that ointment??

twlghtangel's picture
twlghtangel
Posts: 8
Joined: Apr 2017

sending  prayers   

Prayingin17
Posts: 5
Joined: Mar 2017

I had pet Scan yesterday and no news? This is way too much stress!!Prayers please!I can't even think straight!

Prayingin17
Posts: 5
Joined: Mar 2017

I picked up report today to read myself and it's a mass that is" There is a hypermetobolic right hiler/Supra hiler mass present, which appears to partially encase the superior margin of the right bronchus at its lateral margin.The most hypermetobolic focus is seen along the posterior margin of the distal trachea where there is a peak of 13.9 present. There is also a hypermetobolic lower right paratracheal lymph node present measuring 9.2 peak SUV."
I'm not sure how bad this is but in December it was a 3.5 cm nodule so will I die fast from this?

twlghtangel's picture
twlghtangel
Posts: 8
Joined: Apr 2017

its horrible after a  scan to wait and see if its better  or worse,,,   sending you prayers,,, we will find out next week what  my hubby's new  pet  found,,  hoping its good,,hes so depressed..i wish i could take this away for him,,   we will be married 46 yrs  may 1 st,,,  its like  part of me  has it   

 

Kiesmuse
Posts: 12
Joined: Apr 2017

Take 15-20 minutes every day to sit quietly and reflect. Learn and practice relaxation techniques like yoga or deep breathing. Exercise regularly by bicycling, walking, hiking, jogging, or working out at the gym. Your body can fight stress better when it is fit.

taxmeless1
Posts: 7
Joined: Feb 2017

Sorry for you report issues. 3.5cm with a high SUV is cause for concern. People with even stage iv have lived 10 years or more. So look to find ways to improve your health and I wish you success.

twlghtangel's picture
twlghtangel
Posts: 8
Joined: Apr 2017

my husband is a former Marine,, he  has lung  cancer,, had  radiation,,  they told  him in jan,,that the cancer died,,  told him  2 weeks ago its back they want him to do chemo,,he saids no,,he wants to live out his life  his way and not be sick everyday while hes doing it,,, this is first time i have  been on  this site,,  i   just needed people who have the same thing to talk to,, i'm so confused by what doctors tell us..

taxmeless1
Posts: 7
Joined: Feb 2017

I would talk to your doctors, and follow the advice they give you.

I am sick of cancer
Posts: 2
Joined: Apr 2017

I finished 30 treatments to my right lung about 3 weeks ago. The pain is so severe that I cannot eat  or drink.  I have a feeding tube and I still have problems with heartburn and bile reflux .  Does anyone have help for me?  Sclc limited stage

jorola's picture
jorola
Posts: 237
Joined: Mar 2016

to try to dull the pain. Took about 3 months after treatment before all was normal but they hit him extra hard. Hardest the radiologist said was possible. Good thing is the esophagus does heal quite quickly but even my husband said it wasn't fast enough. I think it was also cause he just loves food (weak smile). Hoping things get better for you!!! AND FAST!!!!!!!

Bpowell626
Posts: 1
Joined: Apr 2017

 

 

Hi all, I am new to this forum, seeking answers for my Dad. The biopsies have revealed metastatic cancer in his lungs with involvement in lymphatic system. We have a very rough road ahead. His kidneys are not functioning at present and he is declining quickly.  He has Adenocarcinoma, and began chemo yesterday, carboplatin and one other drug.  Side effects are brutal and he is already so weak.  They have given him 30 days without treatment, maybe a few months more, with the treatment.  Thoughts? Experiences?  We are just trying to figure out how best to navigate this as a family and determine what needs we should anticipate.  I appreciate your comments and insight.  

vanessa.miranda13
Posts: 2
Joined: May 2017

Hi,

I can tell you by my experience that heard your love one has certain days to live is the worst thing. I remember clearly when the doctors told us , my dad had only 2 months to live and they stop the immunotherapy...they ask him if he would like to be at home (nurses coming 2-3 times a week) or in the hospital.

He decided to be at home in Hospice, and the hospice sent a hospital bed, tank oxigen...the first week the nurse came to check him the oxigen level, his heart rate and check him generally.  There will be medicine involve as well, Morphine that will increase as the pain increase. The nurse said he still in good condition and she will be back next week. So, the nurse came next week and she came more frequently as my dad's health deteriotated.

He only last 1 month and a half. That happened 8 months ago. He had Non small Cell Lung Cancer stage 4 with methastasis to the bone, liver... He was a healthy men, he eat every healthy, he used to do bars and push ups. This cancer came out of the blue. It's the hardest thing I have seen, lived, feel, can not tell you enough how my family feels. He was our center, he was our "Lets do it" .

As hard as it sounds, you have to talk to a funeral home, they will help you with options and guide you when to call them.

Be strrong and spend as much time with him, because when he is gone that is when is going to hit you, talk to him about the good times, express your love, hug  him as much. Make his last days the best of his life.

 

 

Kiesmuse
Posts: 12
Joined: Apr 2017

If you live somewhere with little winter sunshine, try using a light therapy box. Practice relaxation techniques. A daily relaxation practice can help relieve symptoms of depression, reduce stress, and boost feelings of joy and well-being. Try yoga, deep breathing, progressive muscle relaxation, or meditation

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