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DeeJayT

Just diagnosed with lung cancer

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Unspecified. Right upper lobe.  7th day the biopsy came back but the pulmonary dr sent it back for a couple of additional tests. Not sure what tests or what the initial test results were. I have an appointment with him on Wednesday Jan 23rd 2019. At the ER I had an Xray and CT scan which showed the 4cm mass and that it's gotten in the lymph system. It appeared near lymph system but Not sure how far into the lymph system though. 2 days later had the biopsy. Monday got a full pulmonary lung function test and a PET scan. The PET scan should answer how spread out it is.  Not aware of any other tests I should have. Is anyone versed in the akaline diet and other cancer fighting skills? Other helpful suggestions welcome. Thinking of getting a 2nd opinion? Who is your Excellent oncologists? I'm close to Indianapolis and Bloomington. Will travel. Sorry not thinking about who I am right now. Just what I need to do. I'm a 58 year old Christian lady, Mother of 2 girls and 7 grandkids. Estranged not by my choice. Praying this family come together. It looks like the grandkids will do that. Generational curse broken. I have given my girls the information. Leaving the door open is something my past generations did not do. Doing so in hope, this will set the precedence from now on. I attend services regularly. I'm trusting the Lord whatever his plan is for me with this news. I actually smiled inside knowing if I don't survive the next thing I will see is my loving saviour and dearest friend, Lord Jesus. I enjoy very much to hike, camp, explore, getting off the path all the time to see what's over there. His creation is wondrous! Just keeps me wondering what's on the other side of those clouds. I hope I'll be able to hop galaxies some day. Does it even work that way? Ha ha! I will ride on anything that moves. Horse, plane, flew one a little bit, train, boat,  just bought my first Honda Shadow trike. Want to ride in benefits and with the Life Riders under the Christian motorcycle association. I have a 3 yr old extremely very smart, willing to please Jack Russell/bull terrier? And 1 year old Gracie the sweet gray cat. Always have kept many of the akaline foods. Just recently added aloe vera juice and a few other things. 

Edited by DeeJayT
Didnt personalize it. 2nd edit was to add info prompted by questions from a moderator.

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Deejay,

Welcome here and so very sorry to learn of your diagnosis.  Let's get a bit more information before I offer suggestions.

First, was your biopsy result inconclusive and did your physician ask for clarification and biomarker or immunotherapy marker tests?  Is the 4cm mass in the lung? Which lung? Do you know of the effected lymph nodes are near the 4 cm mass? What were the results of the lung function test and PET scan. I'm not sure a second opinion would be valuable until your physician gives you a diagnosis and a suggested treatment plan.  Then you will have something to compare against.

As a forum moderator, I'm not able to recommend oncologists or treatment facilities.  Here is some information that may help you choose a good doctor.  As far as a diet or other non science based treatment means, I'd suggest you give conventional medicine a chance first.  Everything I've read in very many studies and journal articles suggest that no diet is capable of treating or eliminating cancer.

Stay the course.

Tom

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11 minutes ago, Tom Galli said:

Deejay,

Welcome here and so very sorry to learn of your diagnosis.  Let's get a bit more information before I offer suggestions.

First, was your biopsy result inconclusive and did your physician ask for clarification and biomarker or immunotherapy marker tests?  Is the 4cm mass in the lung? Which lung? Do you know of the effected lymph nodes are near the 4 cm mass? What were the results of the lung function test and PET scan. I'm not sure a second opinion would be valuable until your physician gives you a diagnosis and a suggested treatment plan.  Then you will have something to compare against.

As a forum moderator, I'm not able to recommend oncologists or treatment facilities.  Here is some information that may help you choose a good doctor.  As far as a diet or other non science based treatment means, I'd suggest you give conventional medicine a chance first.  Everything I've read in very many studies and journal articles suggest that no diet is capable of treating or eliminating cancer.

Stay the course.

Tom

Thank you Tom. I've been wearing my shiny anchor earrings! I added more information to my intro post prompted by your questions. I'm not sure if it is inconclusive and what tests he ordered. Upper right lobe. Emergency room scan showed, in the near lymph system. The PET scan will tell more of spreading. I'll be so glad when one doctor can advise you of thier suspicions even though it is not thier field of expertise. What are they afraid of? I was a physicians assistant. I've cared for lots of people and dug till I figured things out. I didn't hold back advising patients. I was always 100% right. There was a heavy feeling of taboo and fear of losing your job or your license. I still opted for saving a life. Grateful families, but again not popular among most of my peers. I knew my own diagnosis of COPD, asthma, allergies was wrong. I finally talked a doctor into ordering imaging where the mass/pain is. When I got to imaging the order was not for that area at all. Afraid of being reprimanded because of not enough symptoms to justify it. One of my questions has always been in others and myself, why can I target another's pain diagnosis etc...and not my own? I never imagined cancer. 

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Hi there DeeJay, 

I can see you've got a lot running through your mind right now.  I am 51 and was diagnosed in September on a Friday morning.  Somehow we made it into church the following  Sunday- have no recollection of what the service was about.  First things first is one of my mottos in dealing with disease.  There's a lot to think about and do seemingly all at once.  You're strong in your faith and that will get you through the next few weeks.  Take this one day at a time.     Let us know when you know what type of LC you have and we'll all pitch in to help you through what I call scan-a-mania- the pathway from diagnosis to treatment plan.   A brain MRI will be ordered soon as well.   Ask away any questions you have. 

Tom is right- it's not time for the second opinion yet until you have all the diagnostic testing completed and then a proposed treatment plan.  Even then,  a second opinion may not be necessary if the treatment plan is pretty straightforward. 

Treatment for lung cancer has evolved in leaps and bounds in just the last two years.  Hold onto hope and you should be able to do all the things you love to do including the trike!   ( I have a trike but it's a recumbent bike- got it a few weeks before diagnosed and I look forward to wheeling around this Spring!) 

So as for diet- you are probably reading that cancer "likes" an acidic environment. Much to my chagrin, I stopped drinking wine- not because of the acidity, but due to funky liver enzymes.    Who really knows?  Your nutrition will depend on your treatment plan and how well it's tolerated.  For a good place to start, check out "The Cancer Fighting Kitchen".

I'm glad you found us.  You've just landed into one gigantic prayer posse.  We're here for you! 

Michelle  

 

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In looking at your revised post, I want to let you know that you are not alone.  I'm a healthcare professional too that spent the summer in and out of the PCP's office being treated for allergies and acid reflux that didn't exist.  Antibiotics, steroids and inhalers-all failed.   Eventually I was hospitalized with pneumonia and even at that point no one was talking about cancer.  It sort of felt like a giant tap dance in looking back.   Mum's the word is pervasive in the healthcare industry.  

Lung Cancer isn't on any evidenced  based screening tool and there's many of us here in the forum who share your experience. You are already on the survivorship path advocating for the CT scan!

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Thank you Michelle. I know I'm not alone and it helps to have an understanding voice. My pulmonary Dr started in his very good way. That it is 3rd stage non small cell in upper right lobe of lung. As far as they can tell the cancer cells are contained near the tumor site. But his first words warned cancer cells do what they want. Can they 100% really tell if a cell had traveled? I know tests have hidden things and then appeared suddenly later, which is nobody's fault. When I asked the Doctor if it's inconclusive he said he didnt understand what I meant by that. He ordered biomarker and immunotherapy tests which aren't back yet. I see the husband and wife oncology team next Friday February 1st for treatment discussion.

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On 1/20/2019 at 2:36 PM, Tom Galli said:

Deejay,

Welcome here and so very sorry to learn of your diagnosis.  Let's get a bit more information before I offer suggestions.

First, was your biopsy result inconclusive and did your physician ask for clarification and biomarker or immunotherapy marker tests?  Is the 4cm mass in the lung? Which lung? Do you know of the effected lymph nodes are near the 4 cm mass? What were the results of the lung function test and PET scan. I'm not sure a second opinion would be valuable until your physician gives you a diagnosis and a suggested treatment plan.  Then you will have something to compare against.

As a forum moderator, I'm not able to recommend oncologists or treatment facilities.  Here is some information that may help you choose a good doctor.  As far as a diet or other non science based treatment means, I'd suggest you give conventional medicine a chance first.  Everything I've read in very many studies and journal articles suggest that no diet is capable of treating or eliminating cancer.

Stay the course.

Tom

Thank you again Tom.  I know I'm not alone and it helps to have an understanding voice. My pulmonary Dr started in his very good way. That it is 3rd stage non small cell in upper right lobe of lung. As far as they can tell the cancer cells are contained near the tumor site. But his first words warned cancer cells do what they want. Can they 100% really tell if a cell had traveled? I know tests have hidden things and then appeared suddenly later, which is nobody's fault. I'm wondering how is the best way to track this?When I asked the Doctor if it's inconclusive he said he didnt understand what I meant by that. He ordered biomarker and immunotherapy tests which aren't back yet. The lung function test showed mild COPD. I see the husband and wife oncology team next Friday February 1st for treatment discussion.

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Ok-so one step at a time.  The waiting is the hardest part during this time.  It’s great to hear the biomarker & immunotherapy analysis is underway.  That will really help in developing the best treatment plan for you.  Sounds like you’re on the right track so far.  

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The Doctor, I, a dear close friend Debbie, and my brother Monte talked for about 1 1/2 hours. A lot of information. 1st its non small cell Adenocarcinoma. (Sp?) Some info makes sense for the reason they want to do surgery and cut out the upper lobe where the mass is and they will clean around the area on all sides of the mass and along both sides of the chest bone throughly. And remove the one alongside the trachea. Some is sketchy information because he said they can get in there and find it's in the middle lobe also and then cut it out too. Also sketchy because there is a cancerous lymph node alongside my trachea. However, the imaging didnt clearly show them if this node is behind the original tumor therefore it would be preferably contained in one area. That would make it 3AM0 meaning 3rd stage A=contained in one area and Matastesized 0. Or it's alongside the trachea above the tumor therefore would have traveled or metastasized to there. Making it 2BM0. 2nd stage B=outside of originating area Matastesized 0. Seems to me if it's outside the original area, it would be Matastizied 1.  And some missing information, because they didnt have enough tissue from the biopsy to get the biomarkers and immunology results. Could anybody chime in on these questions? Is Squamous or Adenocarcinoma preferable? Is it good to go ahead with surgery without the biomarkers and immunology results? Another biopsy perhaps? Pros and cons? There was excessive bleeding during the biopsy. I asked both pulmonary and oncology Drs if that meant cancer cells now in my bloodstream. I did not get an answer from either one. This bugs me.  Good is the full (from neck to mid thigh) CT/PET scan from last week did not show cancer anywhere else. Of course images have been known to miss hidden cells, and microscopic cells aren't visible. My bloodwork is much better than 2 weeks ago. I had a brain MRI yesterday. Also ultrasound on gallbladder liver kidneys for GI pain. I see my oncologist Wednesday for latest test results. I think I'll call tomorrow and ask to be put on the surgeons schedule.

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Well.. I will try to answer some of your questions. No cancer is preferable be it squamous or adenocarcinoma but when it comes to treatment options, adenocarcinoma has got more options. 

Regarding the surgery, I feel its best to have surgery first, it will help the surgeon evaluate your disease thoroughly and you will have the exact diagnosis of current stage of the disease.  Moreover if it is contained than surgery is the best treatment option currently available in the medical science. So I guess its better to go with the surgery, get eveluated and you may also get lucky and your stage can go down to second or even first stage from stage three. 

Regarding the bleeding during the biopsy, sometimes due to position, lung punctures or bleeds so it is common. 

Also after surgery they will have enough tissues for further evaluation. 

I hope  I made some sense to you. All the very best to you. 

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There are a few issues with targeted therapies worth considering. First and foremost is resistance.  The drugs only work for an undetermined period of time before the sneaky cancer figures it out and the therapy stops working.  There's a lot of research going into this now and hopefully we will have some better answers.  The second is the side effects.  While they are very minor compared to the big chemo agents like Carbo and Cisplatin, fatigue, edema, weight gain, constipation and elevated liver enzymes are the most common.   The strange thing about targeted therapies is the unpredictability of the side effects.   

Hope has given some great advice.  Your PET scan is positive news!  

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Hi  DeeJay T. Hope has given you some good information. Generally, surgery is the best option in situations where it's possible. Another biopsy before surgery would probably add nothing to the determination of whether surgery is possible. The biomarker info would be more important after the surgery, when there will be a question of what other treatment is needed. And there will be plenty of tissue to send off for biomarker testing. I''m not a doctor of course, so I could be off on this. But I think I'd be inclined to do surgery ASAP if the surgeon believes he/she can do it. 

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Thank you all for your replys. I wish my Doctors were able to communicate in lay terms as you have here. I asked a question with most humbleness several different ways. I was told each time it was irrelevant. One time he asked a question,  which I could not know being I'm not familiar with cancer diagnosis and treatment. A nagging question still burns, since the tumor bled excessively, is cancer cells now throughout my bloodstream? I cant find an answer online. Tap tap tap... My precious clients had already been through all that when I met them. In Post recovery I added nurture and nutrition and watched for signs and symptoms that needed to be communicated to thier medical team. I met a lot of wonderful people and very compentent and kind med teams. It's so different isn't it when advocating for yourself? I'm going to call right now. I slept in till 11a. Seems it's getting later in the day when I rise. Not my norm at all. It doesn't help that a few of my friends and mostly my brother want to start calling at night. I've asked they call during the day. Old habits are hard to break. And I've always been the go to person. I feel just a smidge guilty for shutting my ringer off the last couple of nights. What I'm doing adds to my energy level. But when I have to fast for 3 medical appts in one day my energy is zapped for a couple of days. My 2nd blood draw lab reported a lot better numbers! Whoo hooo! I owe it to my support people's encouragement in a cancer fighting diet regimen. I'm drinking water, aloe, grape, cherry, and straight carrot juice, doing detox, with milk thistle, a liver detox, dandelion root,  and Pau D'Arco tea, and eating only fresh fruits and veggies. All in moderation of course. Except the carrot juice. Drinking juice from 5lbs of carrots every day, and more if I can. I've heard most wonderful testimonials about this. I'm adding a little dairy in the form of yogurt and some cheese, due to most of the secular sights like the  National institute of health and FDA, American Cancer Society,  recommend dairy. They do say refrain from meat. But if so, then do poultry and fish. I've cut out all meat. Experimenting, I became very fatigued, nauseous and pain level skyrocketed with the meat. I am eating seeds, walnuts and almonds since they are great antioxidants. I was finally able to find black walnuts. Lots of supplements. Turmeric for pain etc... vitamin D helps immensely with depression. C to ward off potential seasonal illnesses. And others.  Charcoal poultice and slurrys. I am such a nurturer I am glad to share! Hope this helps someone. 

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Hey DeeJay

I see you have your own version of what I call, "the hippie protocol" going.  You may want to check out a couple of cookbooks- The Cancer Fighting Kitchen,  How Not to Die (I know horrible title), and FAME. (Food as Medicine).  I think it all helps.  You may want to check into Pectasol-C a modified citrus pectin.  

As for the phone- I had exactly the same problem-people calling me at night when my energy levels are zero.  It's hard to retrain your friends and family.  I turn the ringer off at 7pm.  They'll learn new habits....   Glad to hear your counts are improving.  Keep it up! 

 

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