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Edward from Australia

NEW LUNG CANCER PATIENT

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Hi everyone; first of all I would like to wish all of you success with your treatment and hope you all survive for a very long time

My name is Edward and I live in Australia; and for the past week I have been coughing up blood and on Friday 13th September 2019; I was diagnosed with lung cancer and now waiting to get an appointment to see a lung specialist. I have read some information online which said normal treatment is removal of a part of the lung followed by chemo; and that life expentency is usually 3 months to 5 years; however; I have also had emphysema since 2005 ( but not on oxygen yet ); therefore because of my emphysema I fear that the surgeon might not want to do surgery; as in removing a part of my lung; therefore I am very frighten and worried because I do not know what to expect.

I would therefore very much appreciate any information anyone can give me, such as treatments, what to expect from this point onwards and anything else which might help. Thank you for reading this and for any advice and support. Have a great day

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Edward

Your meeting next week with the Pulmonologist who will make a appointment for you to have a biopsy to take a sample for testing from your lung to find out if cancer is present and also test your lung functions if you maybe a candidate for surgery depending on the results if cancer is found, Or refer you to a oncologist for A treatment plan.I assume something showed in a ct scan that got you this far.. Hope this helps many have been there done that on this forum.

 

Bob

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Hi Robert and thank you for your very fast reply and comment.

I had a CT scan done late last year due to chest pain and I had another CT scan with dye done 2 days ago; so they compared the 2 and their written results are as follows:-

Smoker, haemoptysis, ? Malignancy.

Severe emphysema changes in both lungs, worse in both upper lobes with multiple bullae. A 14mm nodule in the posterior right upper lobe has increased in size ( previously 5mm ) There is ill defined opacity in the medial right lower lobe, extending from hilum to right base with mild focal opacity medial to azygos vein. Mild similar changes in the inferior right upper lobe.

No other pulmonary nodules. No pleural effusion. No focal bone destructive lesion. Limited view of the upper abdomen is unremarkable. Stable cyst in inferior segment 6 of liver.

Mildly prominent right paratracheal lymph node. No enlarged axillary lymph nodes.

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Edward

After the biopsy if cancer is present and if it is they will send you for a pet scan to get the big picture of your whole body and then stage your cancer and depending on all the results make a plan going forward. As for interpreting ct scans i leave that up to the experts never did that class at school to busy handicapping horses.Any questions just fire away there is always someone here who can help.

Bob

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Hi Robert;

Just read your latest comment and was wondering what a pet scan is ? because I have never heard of that type of scan here in Australia....As for being able to read CT scans, I think 99% of us patients have no idea how to read them, I should write them in plain english so we can all read them.

One of my neighbors is a hospital theatre orderly so when I see him next I am going to ask him if he knows how to read them but he probably will not know.

I do very much appreciate the advise that you and anyone else on here gives me, because as you and everyone else on here can understand I am very nervous and worried not knowing what to expect or how long I have to live

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Edward- I am sorry that you're having to contend with so many unknowns but that unfortunately is how things play out when diagnosing tumors. Lots of worry, anxiety and fears.....very understandable, we have all been there. I had a very kind Pulmonologist who saw my anxiety climbing and prescribed me some anti-anxiety medication. 

As Bob has mentioned, there are still quite a few "diagnostic" tests that will have to be performed before a cancer diagnosis is confirmed, before a treatment plan can be put together, if one is warranted. 

A CatScan confirmed a tumor

A Pet Scan will confirm if you have cancer and where.

A biopsy will confirm the type of cells that make up your tumor and if it's cancerous or not. Some physicians will also do molecular biomarkers at this point to identify any cancer cell mutations.

A brain scan will need to be done separately to rule out any tumors in your brain

If your BIOPSY AND PET SCAN is positive for cancer,  they will Stage your cancer. The staging of your cancer will determine your treatment plan.

Hope this helps.

Take Care, DFK

 

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Thank you DFK for your message and information, you have no idea how much I do appreciate the information which you and Robert have given me.

This is a very hard time for us all and I very sincerely hope that we all successfully get through what we are all going through

I recently discovered that I am very lucky this year because I am 62 years of age and have no one in my life other than my dog. My dog and I moved into a regional town called Drouin in August last year and back in February this year we had a severe bush fire not far from here, so my dog and I spent 2 nights at the local evacuation center, where I met a very nice lady whom has a boyfriend and 2 children. A few weeks later she began calling at my home regularly sometimes with her boyfriend and children, just to make sure I am ok. They have since been at my home for dinner and visa versa and I spent fathers day at their home Yesterday after getting the CT scan results, I revealed to them that I view them as the family I never had, then they told me that is good because she and her boyfriend view me as a dad and their kids view me as their grand dad.

Since getting the CT scan results they have told me that if I end up in hospital for any reason they will look after my dog and if I eventually die they will give my dog a loving home. They are also going to drive me to appointments and if I am diagnosed with cancer after all the tests, then they want my dog and I to move in to their home so they can look after me.

Then this morning ( Australia time ) I found this amazing support group online.

Therefore, all of a sudden I have a family which I never had whom will physically support me and look after my dog; which is a lot of worry off my mind if worse comes to worse, plus I now have all of you amazing people on this site; which helps me even more because everyone on this web site is going through the same thing and knows how each other feels

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Thank you also Robert for the web site link which you sent to me; which I have now checked and read and was very helpful.

The PET scan sounds very similar to the CT scan which I had 2 days ago, because with the CT scan I had they put me through the CT scanner then they injected me with a dye then put me back through the CT scanner; however at this stage they have only scanned my chest because that is what my GP requested.

After they injected me with the dye the lower part of my face and my throat felt very hot and my throat went dry and the nurse told me it is very unusual for the throat to go hot OR dry after being injected with the dye.

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Edward

Sorry to hear about the possibility of your diagnosis. While I tend to prescribe to the thought of "hope for the best, but plan for the worst" I do believe that keeping a positive attitude in this fight is very important. I was surprised, but not shocked to find out 1-1/2 years ago (at age 61) that I had stage 3A NSCLC. Since then I've been though multiple CT's, had both the Lung Needle biopsy (needle between the ribs and into the lungs) and the fine needle aspiration biopsy (bronchoscope tube and needle down the throat), two PET scans, two Brain MRI's, Concurrent Chemo/Radiation Treatments, Follow-up Consolidation Chemo, and then 10 months of Immunotherapy. While everyone is different, I would have to say that while there have been many less than pleasant days, that it was not terrible and that I am still here fighting. While I'm still classified as 3A, most of the tumors in my right lung appear now to be just scar tissue and the lymph nodes that had cancer appear to no longer do so. However there is one spot that decided to put up a good fight against the treatments so next Monday I get my next lung needle biopsy to help determine what my next tool in the battle against this will be. In most regards, while still a 3A, I am in a better condition that I was 18 months ago. While I have a few "battle scars" from the past 18 months, I actually feel pretty good.

Keep a positive attitude, don't give up and keep on fighting. I just joined this forum a few months ago and found so many great and helpful people here that I now visit here at least daily. To read the stories here and learn from the experiences from people that are also fighting a similar battle as me helps in so many ways.

The CT you had sounds like they did both a Chest CT without and then with Contrast. The PET scan is very similar to a CT Scan except that they inject a radioactive glucose that cells with high metabolic rates (such as cancer) absorbs very quickly. The high metabolic cells that absorbs this then "glow" yellow in the images that the PET scan machine takes and then the radiologists use both the CT and PET images to make their "findings" and recommendations. My last PET scan, I was actually "inside" the machine for exactly 26 minutes. Just speaking from my personal experiences, if there is a positive indication, especially if it is large and/or multiple ones then you will have biopsies done to actually confirm the cancer and determine what type. I understand that the PET scan also helps identify which lymph nodes (if any) may be involved. Both of my PET scans have been "whole body" to see if there is a concern that there may be cancer elsewhere as well. All of this goes into staging the cancer which then determines the treatment options. If cancer is confirmed, you'll likely then also have a brain MRI done to determine if the cancer may have been spread there as apparently CT and PET don't work in the brain. The MRI machine is similar to the CT and PET scan machines, except your head is immobilized and you spend a long time in the machine. If you're claustrophobic you might want to ask to be prescribed some antianxiety meds. They helped me (a little) the last time a few weeks ago, but I do still dread the thought of having another MRI. I also have them cover my eyes with a towel, put ear plugs in, put the headphones on me and then really crank up the classic rock tunes for the duration that I'm in there. 

Once again, stay positive, don't give up hope and always keep on fighting. Some people do win this battle!

-Ron

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Ron H; Thank you also for your reply; which I have found very informative.

I am extremely sorry to read that you have been through so much since being diagnosed, as it sounds like you have been through hell, not just with the diagnoses, but also with all the many different scans you have had over the past 18 months.

It is however; extremely good news that after 18 months you are still alive and fighting; and to me, from what you wrote, it sounds like you are going to beat this horrible disease and be a survivor.

One of the many things which worry me about my situation is that back in late 2012, a chest X ray and a scan with dye showed that I had a growth on my 6th right rib; so they tried to do a rib biopsy using a CT scanner and local anasetic, however although they gave me 4 times the normal dose of local anasetic I felt them cutting in to my side and then felt them hit a nerve near my rib, so they decided not to proceed because obviously that part of my body failed to go numb; so they booked me in to the Alfred hospital ( which is supposed to be one of our top hospitals ); so they could put me to sleep to remove a part of that rib. On New Years day 2013 I was admitted in to that hospital and the biopsy was done the next day, however shortly after returning home a week later I had discovered that instead of taking out a part of my 6th right rib, they took out a part of my 3rd right rib by error to do the biopsy and I was too afraid to follow up on that again to get a biopsy on the 6th right rib.

Therefore, now in my current situation; I am wondering if that growth on my 6th right rib was cancerous and never discovered at the time because they did the biopsy on the wrong rib; and now as a result, possibly spread to my current diagnoses.

Based on what I read in your message about your scans, biopsy and treatment; it sounds like they do the rib biopsy under local anasetic and if that is the case, then I am going to feel the whole thing, because as I stated above, the local anasetic, for some reason does not work on me.

In my case, I think a lot of errors have been made, some by the doctors and some by me, because firstly as stated above, the removal of the wrong rib for biopsy in 2013; in addition to this over the past several years, when I lay down in bed to sleep I can hear myself wheezing which sounds like a cats meow; but I did not tell my doctor because I just thought it was my emphysema, for the past few years every time I wake up after a sleep or nap my throat has felt like it was on fire and very dry, but again I did not tell my doctor as I just put it down to being my emphysema.

This year, during our Winter, which just ended 15 days ago; I have had severe back pain in the lower back which has lasted many weeks and this time I did see my GP; however, because I also suffer from Osteo Arthritis in my lower back, my GP refused to do any tests and we both put the pain down to being the cold weather causing my Osteo Arthritis to flare up and cause severe pain so he just gave me stronger pain killers.

Over the past several weeks ( during Winter ) my cough has been slightly worse and 2 weeks ago I got in to a bad coughing fit which lasted about 20 minutes or more; and again I did nothing about it as I simply put it down to being either my emphysema or a mild cold due to Winter.

Then on Tuesday this week, I discovered that every time I cough, I am coughing up blood; then last night, about 30 minutes after I ate my dinner, I vomited my dinner up and there was some blood in that vomit.

As of 4 days ago, my vision has been more blurry and I have felt a bit light headed.

After looking up on the internet, this week; I discovered that ALL of these symptoms I have mentioned above; are all possible signs of Lung Cancer.

I have written all of this information here now, because everyone on this web site are either suffering Lung Cancer or knows someone whom is suffering Lung Cancer; therefore, I want everyone aware of the mistakes that I have made these past several years by ignoring these symptoms as each one arose; because I do not want anyone to make the same mistake.

Whenever anyone sees any new symptoms of any kind, NEVER just pass it off as just being caused by another existing medical problem; ALWAYS go and see your doctor as soon as any new symptoms appear.

Over the years, through the media and Go Fund Me pages; I have discovered that over there in America, your doctors have many medical procedures and treatments for numerous different medical conditions, which we do not have available here in Australia;  therefore in many ways, people in the USA are much luckier.

In having said that, I sincerely hope that ALL current and future cancer patients over come their horrific ordeal and become survivors and throughout my whole life I have always hoped that for all patients with horrible diseases, never thinking that one day; I would also become one of those thousands of people whom end up battling such a disease.

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Edward,

You are getting a lot of good counsel and experience from others on the forum and that knowledge should be helpful.  In my case I had a lobectomy with no need for additional treatment, but I can tell you that others here have had such combination treatment and lived well-beyond 5 years.  So, I have three pieces of advice for you:

1. Do not look for information online regarding survival rates.  These numbers are calculated based on a running five-year basis and do not accurately reflect the present state of treatment and survival.  I can't speak for Australia but, in the US, more advances have been made in the past five years than in the last fifty.  So please stay away from Dr. Google.

2. Work closely with your treatment team.  Understand fully the extent of your disease and the plan of attack.  You need to be a participant and not a passenger on this journey.  You should always understand what is happening, why and what to expect from it.  It doesn't mean you are being bossy, but rather staying aware so you can advocate for yourself, when necessary.

3. Stay in the present and keep your mind focused on the process and the things that give life meaning for you (family, friends, faith, hobbies).  Your psychological state will have as much to do with your eventual survival as your physical.  Feel free to come here anytime to seek input from folks here that have gone through the journey you are now on.  You'll have us here as long as you need us.

Stay strong and focused on the recovery you deserve to have.  You'll also be in my thoughts and prayers.

Lou

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Edward-

There are a lot of very knowledgeable people on this forum and there is hardly a day or two that I don't learn a new thing or hear of something that I wondered about. Although there are similarities for everyone here, I've learned that everyone is different and have had different experiences on the path here to this forum and with this disease.

I do very much agree with you that people in general need to be more observant and have anything that just doesn't seem quite right evaluated by a medical professional. Of course as you experienced, they are not infallible either. 

In my case; being a former smoker over age 55, my primary care physician recommended a Low Dose CT Scan (LDCT) of my lungs as part of an annual physical in early 2014. I went ahead and had it done and the report came back with no indications of lung cancer at all. Receiving a clean report I thought to myself that I had lucked out and had quit smoking soon enough several years earlier. (Laying in a hospital bed for almost a week after a heart attack in late 2012 and then going into V-Fib while in still in the hospital made a good motivator to quit smoking). Shortly after the LDCT in 2014 I went in to A-Fib at the gym of all places. At that time I was still exercising daily at the gym and was loosing weight as part of my cardiac rehab. After several failed attempts at cardioversion over the next year to restore a normal heartbeat, my cardiologists placed me on blood thinners and anticoagulants permanently. I tried to continue with the gym but it seemed that all the heart beat sensors on the machines would sense the a-fib heart beats and alarm on me, my heart rate would be extremely high plus my Blood Pressure would have huge swings. Eventually I stopped going and soon found myself gaining weight and started to get very winded when I did anything physical. Thinking about it I thought to myself that I within the past 2 or 3 years I had a CT scan that was good, I was significantly overweight, I don't exercise much and I had confirmed continuous A-Fib. I had also read on the internet (good old Dr Google) that getting winded and tired easily is sometimes a symptom of A-Fib, so considering these things, I figured that was the just the way it was and wasn't too concerned about it. It did get a little worse as time went by and by not exercising much I gained even more weight even though I still ate healthy most of the time. Then in 2018 as part of my annual physical (which is 100% covered by my insurance, plus my company by then had started to pay us a $150.00 (USD) bonus to have a checkup yearly), I had another LDCT. This time it came back with multiple indications in my right upper lung, which then started all the other diagnostics leading up to where I am today 18 months later. I really don't have anyone to blame other than myself for smoking all those years and then putting off getting things checked out. Up to my heart attack I had rarely if ever visited a doctor and the last time I was in the hospital was when I was a kid 50 years earlier. Being one to have always have considered himself invincible, I even drove myself to the hospital when I was having the heart attack. In hindsight, I made a lot of mistakes along the way, but I do also wonder if the original LDCT did actually have indications and the Radiologist simply missed it in 2014. I went from nothing all the way to Stage 3A in less than 4 years but in any event, I should have not waited for so long in-between LDCT's. 

Sorry to hear about your journey to where you are today. I'm sure everyone experiences the lung needle biopsy a little different. You are correct that I was awake for it although some sort of light sedative was injected into the IV to help with the nerves. If I recall correctly, they want you awake and responsive so they can tell you to hold your breath while the insert the needle into your lung to take the samples. I would imagine getting to the right spot in the lung is already hard enough without the lung expanding and contracting while breathing. I recall them taking 3 or 4 samples. I would say that I felt absolutely no pain during or afterwards, although I was somewhat terrified of the rather large and long needle when I saw it before they started. I also didn't enjoy being strapped down and completely immobilized. I understand why they do it, but I hate to be restrained like that where you can't even move your head or feet. At that point you're totally helpless and you know it. Report time to the hospital is tomorrow morning at 7am for the next lung needle biopsy and my nerves are building. It'll likely be a long night tonight. Then I have to wait till Wednesday afternoon to get the results.

I really do want to applaud you for thinking ahead about your dog and the "what ifs". It goes a long ways to show that you are a good person and a responsible companion/caretaker to your dog.

I don't know and it would be a good question for the doctors and nurses or others here, but perhaps taking a sample off an actual rib is different (pain wise) from going in-between the ribs and into the lung. You are right, all I had was a local, and I had no what I would call pain, but did feel some pressure as it was going in and then could hear the samples being taken (a clicking sound), so I guess I would say that my only "pain" was more mental than physical. It also doesn't help being told that you will be at the hospital for at least several hours afterwards and have several x-rays before you are released to check if your lung decides to collapse from the hole made by the needle. Yep, the nerves are certainly in overdrive today.

Hoping and praying for the best for you.

-Ron

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LouT and Ron H; I sincerely thank you both for the latest information you have given me and Ron H;  I really do hope the results of your latest tests will be good news for you.

I am 62 years of age, been smoking since I was 9 years old; and drove trams from 1976 until 1980 during which I smoked 120 a day due to the stress of the job. In 1993 I was involved in a minor car crash and had a chest x-ray which showed the first signs of emphysema, but foolish me thought nothing of it and kept smoking. I always lived in the Melbourne suburbs, however in 1993 I met my 2nd wife and we ended up moving to Warragul which is a regional town in Victoria Australia and we began attending the local Assembly of God church every week and I always went up for prayer at the end of every service. After church one Sunday morning I went up the front for prayer, went down on the floor under the power of God and God pinned me to the floor for over an hour, after and hour the senior pastor came over to me and said that God wants me to quit smoking and will not release me from the floor until I give him my cigarettes. I told him I was not ready to quit so he told me ok I can stay on the floor because God will not release me until I do; so my pastor took the cigarettes from my pocket at which time God immediately released me from the floor, but foolish me then went straight to the shop to buy more.

By this time, I also had 2 daughters as well as my 2nd wife and we separated in May 1997 and I was getting 3 access visits a week with my daughters.

Over the years I've tried every method available in Australia to quit smoking ranging from patches, champix tablets, hypnotherapy, acupuncture and other methods and the best I've done is 3 days off the cigarettes, by which time I got the shakes very badly and got a very bad speech impediment and could hardly get my words out and at the time I owned and operated 2 businesses; so my speech was important so I could talk to clients and workers, so by the 3rd day I always started smoking again.

At church, in 1998 I became a church deacon and the church began holding weekly bible study groups in my home. Later that year, my church held a 4 nights conference with a guest pastor and on the last night at the end of the service I went up to that guest pastor and ask him to pray to help me quit smoking. He told me to lay on the floor, he placed his hand on my stomach and prayed for me. From that moment onwards I had no cravings, no withdrawls and not even any thoughts of cigarettes for 7 weeks; then one day I was messed around with my access visits with my daughters; which stressed me out a lot, I found a cigarette butt in my home so I lit it then been back smoking again ever since.

My oldest daughter was being physically and emotionally abused by her mum and nanna and also sexually abused by her uncle Peter ( whom is a peadophile ) from the age of 4 years of age and I fought very hard to protect her, but that family covered it all up and the system refused to do anything to help her and after a while they stopped my access visits so I could not get any evidence; so I then did not see my daughters for nearly 20 years. When my oldest daughter was 12 years old thier nanna told me they both died in a bush fire, but about 4 years ago I accidentally found them both on facebook and I tried to convince my oldest daughter to go to the police with me, but she refused and I told her I will go to the police with her whenever she was ready. About 18 months ago I found out she had died and I believe she was murdered by that family to keep her quiet.

In 2005; I was diagnosed with progressed emphysema ( COPD ) and I became very stressed, close to having a nervous break down because of what my oldest daughter was going through and now I thought I was going to die within months or a year and began worrying about whom will then look after my dog and thought I would no longer be around to fight to protect my daughter, so I began drinking alcohol very heavily to help me sleep. As a result; 18 months later I was also diagnosed with a fatty enlarged liver; which made me immediately stop drinking alcohol, gave me a wake up call and got me back on track.

These days my medical problems include Emphysema, fatty enlarged liver, Osteo arthritis in my lower back, high blood pressure, anxiety, often get cramps in my legs and feet, wheezing when I lay down in bed to sleep and now numerous pains throughout my body from time to time, and since last Tuesday coughing up blood and from Saturday occasionally vomiting up some blood.

My new found friends have been visiting me at home every day since last Friday when I got the CT scan results, because they and I see each other as family and they really want to help me and look after me. They are also heavy smokers and told me that my CT scan results and vomiting up blood is a wake up call for them as well; so we made a pact that once I see the Lung specialist and get a better idea of what is going on; we are ALL going to try to quit smoking together and support each other during our attempt to quit.

While my new female friend, her boyfriend and her son were at my home yesterday, her 8 year old son asked me if I would mind him calling me Grand dad and that made me very happy.

I have to phone the consulting suite of my Lung specialist today to make my first appointment. They phoned my home last Friday to make the appointment, but I did not hear the phone ring, so they left a message on my phone, which I did not get until about 6pm that night and they closed at 5pm and re-open at 9am Monday ( today ).

One of my current biggest fears is that if the lung specialist does tell me that I have cancer, then he might be limited on the tests and treatment he can give me due to my already damaged liver and badly damaged lungs due to the emphysema and due to the emphysema I fear that my chances of surviving lung cancer is much shorter than a lung cancer patient whom does NOT have emphysema.

But like people on here have told me, I have to think the "best" but plan for the "worst" because worrying can make the cancer worse and decrease the chance of survival; but this; like we all know; is very hard because I suffer from anxiety and because of that I always tend to think the worst.

We are all facing the same concerns and worries in regards to our conditions and no doubt it is a long drawn out battle for us all; but I do know within my heart and mind that God is with us all and that each one of us, at the time of our birth, have been given a set time to die, by God and that if it is NOT our God given time to die, then we will survive our current battle. When we are each born, we are each given God given duties to perform in this world and it is not our time to die until AFTER we have carried out all of those God given duties.

Throughout our life, God puts us all through trials to test our faith, to bring us closer to Him and to strengthen us, and yes sometimes even diseases like cancer; but He will pull us all through these trials and tests. We just have to have faith in God and faith in our doctors because God gave those doctors the knowledge and ability to help us all through this battle.

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On 9/14/2019 at 1:47 AM, DFK said:

Edward- I am sorry that you're having to contend with so many unknowns but that unfortunately is how things play out when diagnosing tumors. Lots of worry, anxiety and fears.....very understandable, we have all been there. I had a very kind Pulmonologist who saw my anxiety climbing and prescribed me some anti-anxiety medication. 

As Bob has mentioned, there are still quite a few "diagnostic" tests that will have to be performed before a cancer diagnosis is confirmed, before a treatment plan can be put together, if one is warranted. 

A CatScan confirmed a tumor

A Pet Scan will confirm if you have cancer and where.

A biopsy will confirm the type of cells that make up your tumor and if it's cancerous or not. Some physicians will also do molecular biomarkers at this point to identify any cancer cell mutations.

A brain scan will need to be done separately to rule out any tumors in your brain

If your BIOPSY AND PET SCAN is positive for cancer,  they will Stage your cancer. The staging of your cancer will determine your treatment plan.

Hope this helps.

Take Care, DFK

 

Thank you for referring me here to this site from Inspire, I really like this site Roseann (Mistercat12)

 

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Edward,

Welcome here.

We have a similar diagnosis path. I started coughing up blood also. I've had almost every form of lung cancer treatment but immunotherapy and am nearing 16 years of life after diagnosis.  If I can live, so can you.

Others have already given lots of good counsel. Your PET scan will show where cancer is metastasizing. Here is some information on a PET. After the PET and depending on the outcome, a biopsy may be the next step. Don't worry about the location of the biopsy. If you have multiple areas of metastasis, doctors will generally chose the easiest available site. As others have said, the biopsy is key to designing a treatment plan.

Have your doctors given you something to ease your coughing?  If not and you are still coughing, this might be a good idea. It sounds like you got lots of complicating medical problems on hand. Put your worry about those aside until we get the results of a biopsy. Your medical complications will come into the picture when your doctors design your treatment plan. So focus one step at a time: PRT scan, biopsy, then treatment plan.

Here is something I wrote a long time ago that many newly diagnosed find helpful.

Stay the course.

Tom

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Tom Galli; Thank you for your very interesting message. I checked out the link you gave me, which I found very interesting and helpful and put my mind at ease a lot before going to see the specialist today and I will reply to that tomorrow because I've just had a 2 hour round trip to see my specialist so I am tired.

In regards to me coughing up the blood, my specialist told me that is just inflammation of my lungs so he gave me medication to take over the next 17 days to try to fix that; so that gives me some peace of mind and my next appointment with him is on the 10th October 2019.

So hopefully that gives some peace of mind to anyone else whom has just began coughing up blood.

As for the growth in my lung, my specialist told me that because it has grown 9mm within 10 months there is a "very high" chance that it is lung cancer so he has referred me to have the PET scan which will be done on the 7th October.

In my mind if he was really worried about that growth he would have classed it as urgent and arranged for the PET scan to be done much sooner; therefore; in my mind he only told me that it is a "high" chance of cancer so I can prepare for the worse and then feel much better after he gives me the PET scan results. ( or at least that is how I need to view it to help me cope whilst waiting for the PET scan ).

Therefore; if anyone has just recently began coughing up blood and NOT yet seen the specialist, please have peace of mind that you too might only have inflammation of the lungs, especially if you are or were a smoker or recently had a cold or flu.

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Hi Tom Galli; As I said in my previous message; I found what you wrote on the link you gave me to be very helpful and very detailed and in fact it provides so much very good information that I feel you should write a book to help other cancer patients, however; I have found out that to get a book commercially published it needs to consist of a minimum of 60,000 words and I found this out because I have written 2 books and tried to get an agent in Australia, England and USA and one of them informed me about the minimum required number of words.

I must admit that when I read what you wrote in that link; about YOU being a former soldier ( meaning you must be a very strong tough man ); and even YOU found your cancer journey to be very tough; that immediately bought me to tears; because it made me suddenly realize just how tough the journey really is for every cancer patient; however; I was very happy to read that you are still alive 16 years after your first diagnoses and that many other people whom have left me messages of support and help are still alive long after their first diagnoses.

When I got my results of last week's CT scan I was terrified because here in Australia on our packets of cigarettes they have large photos of various diseases caused by smoking; such as emphysema and lung cancer; and on the lung cancer one they have 2 photos of a man, one of him in good health and one on his death bed and on the cigarette packet it said that he went from that good health condition to the death bed condition within just 10 weeks after his first cancer diagnoses; therefore I feared that I now only had about 10 weeks left to live. ( Maybe our Government just wants to scare people in to quitting smoking so they said it only took 10 weeks ).

Speaking of cigarettes; I really have 2 reasons to quit smoking; one obviously is because of my health problems and the other is that here in Australia a packet of 20 cigarettes costs a minimum of $22 AU and they go up in price by $2 every 6 months.

Yesterday, when I saw my lung cancer specialist, I suddenly realized how expensive this journey is going to be because he refuses to "bulk bill" and he charges $250 AU per visit which MUST be paid on the day and he told me that the PET scan costs $ 1000 AU and that they will not bulk bill either and told me that none of the places that he might need to send me to will bulk bill me either.

On this occasion, the specialist cut his fee to $200 and my friend ( whom I view as a daughter ) drove me there and was in the room with me for support and she paid the $200 ( which I will repay ) and medicare ( our free health system ) only rebated her $75 AU meaning my debt to her just for that first visit alone is $ 125 AU.

Due to my numerous health problems I am on a disability pension and my rent alone is $ 520 a fortnight so I really do not know how I am going to get through this journey financially; especially if I have to undergo many different high priced tests and I dread how much my specialist will charge me if he has to do surgery because that would cost thousands of dollars.

No doubt many cancer patients face the same problem, especially there in USA since TRUMP did away with the free health care system which OBAMA very kindly set up.

I am seeing a counselor to help me cope with the murder of my oldest daughter; and last week when I told my counselor that I was coughing up blood; she did pre-warn me that if it is cancer all the tests and treatment is extremely expensive, but gave me no idea just how expensive; but she did say there are organisations that can help me with a PART of the costs.

Several people have very kindly left me messages of support and advise here; all of which has been helpful; and thank God you have ALL survived a very long time since your first diagnoses; and I am just wondering what sort of costs you have all faced for scans, Xrays, biopsies, chemo, specialists, treatment etc throughout your long journey; which would give me some idea of the financial costs I am facing in the future, even though prices most likely differ between USA and Australia; at least it would give me some idea.

When I left a message on here last night, I said that my specialist has referred me for a PET scan and that there is a "high' chance that the growth on my lung is cancer.

When I got up this morning, I re-read all the messages that have been left on here for me and that has put a question into my mind which is:-

Does the specialist refer the patient for a PET scan if he "suspects" cancer OR only if he KNOWS it IS cancer and wants to see how far it has spread ????

 

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Edward, the answer to your question regarding the PET scan will probably be better answered by others here such as Tom or DFK, but the CT only identifies tumors or areas of growth that does not appear normal but those tumors can be benign and not actually be cancer. The PET scan is more definitive but still not 100% proof that it is cancer. A biopsy has to be done to remove actual samples for the pathologists to look at to confirm that it is actually cancer, and what type. The PET scan also helps the Radiologists identify additional suspect areas to test (biopsy), like the lymph nodes and which ones. All together, along with likely a MRI will allow the doctors determine the best course of action.

My thoughts and prayers are with you! 

-Ron

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Edward,

I wrote a book and self-published it on Amazon. They didn't have any minimum word limit at the time. Search on Amazon for Scanziety if you want to read it.

How much did my lung cancer treatment cost? Well, first realize is had nearly 3 continuous years of treatment including 3 thoracic surgeries, a host of other related air way procedures, 28 infusions of chemotherapy, a conventional radiation treatment and a precision radiation treatment plus a 18 weeks of targeted therapy in pill form -- Tarceva.  All in for income tax purposes, my total treatment cost was $1,322,418.00. My employer's insurance that required my monthly contribution of $385/month covered nearly all my cost. By way of explanation, employer provided health insurance almost always requires a cost share that comes out of your pay and additionally and co-pay cost share paid at the time of treatment.  One more point, health care in the states has never been free. We either pay from our salary and pay a co-pay at time of medical service or pay higher taxes, even with Obama care.

In answering your PET scan timing questions, first I need to reveal I don't know about the Australian Medical System or its policies. In the states, normally, generally usually, a PET scan is administered after a CT scan shows pretty convincing evidence of cancer. But, sometimes, that is not the case.  And, even in circumstances where a doctor has a belief one has metastatic cancer, the PET scan reveals otherwise. 

Stay the course.

Tom

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Thank you RonH and Tom Galli for a fast reply and for that information.

Tom Galli; I am shocked that all that treatment costed over one million three hundred thousand dollars; so thank God those costs were covered through your job.

I am also shocked that even through Obama care that health care was never FREE in the USA.

Here in Australia; when OBAMA introduced the Obama care health system; our news media in Australia widely reported that was introduced to make sure that ALL Americans can receive FREE health care and treatment regardless of their financial status and when I heard that I thought WOW now many more people in USA can finally get the health care they need.

In England all people whom were born and live there get 100% FREE health care and medication; based on what I was told by people from there plus my dad was born there and lived there again from 1981 until he died.

Here in Australia; most GP's will bulk bill; some will charge a small excess fee. X rays and CT scans are FREE ( bulk billed ) if you are on a pension or unemployment benefits and if on those benefits, the costs of many medications is only $5-80 AU, some medications for serious health conditions, if on benefits can be up to $ 100 per script; however; none of the scans, medications and other treatments for cancer are bulk billed for cancer after the initial X ray and CT scan, even if you are on a pension or unemployment benefits.

Many years ago; in my early 20's I had a girlfriend whom worked in a pharmacy ( chemist / drug store ) whom told me about their massive price mark ups and the pharmacutical companies massive price mark ups and to me that is shocking because it shows they care more about profit than really help the sick; so I get the feeling that there in the USA there must be thousands of very sick people whom suffer and die because they cannot afford health care and treatment

It is so sad and shocking.

I see my counselor this afternoon; so I am going to talk to her about what help she can arrange for me to help with the ongoing costs and how much percentage of the costs those organisations will be able to pay for me; otherwise if they cannot cover most of the costs I will NOT be able to proceed with any future scans, specialist appointments, surgery, treatment; because on a pension; after paying rent, electricity, gas, water, phone and funeral insurance costs; I am left with only $ 50 AU a week to live on for food, fares and all other living expenses.

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Hope you are all feeling as well as can be expected.

I would love to be kept up to date with how you are all going with your own tests and treatments.

As stated above, I saw my counselor on Tuesday and asked her what type of financial help she could get for my future tests and treatments and visits to the specialists, but she only began working as a counselor in this area in recent months so she was not sure what organisations to contact, however, so far she has arranged for me to see the Catholic church whom said they can help by giving me food vouchers to enable me to use my normal food budget money towards the medical bills and she is looking in to other organisations whom might occasionally pay my rent, electricity or gas bills so I can also put that money aside from my pension for part of my medical bills.

I was just thinking; if my specialist decides to put me on chemo and radiology; it is my understanding that those treatments make the patient feel very sick, therefore do they normally put the patient onto a special food diet ????

When I saw my lung specialist for the first time on Monday I did not get to ask him many questions because he rushed me in and out ( only 10 minutes with him ) because last week my GP thought it was so urgent that he faxed the referral to 3 different locations where the specialist works. The location where he works closest to my home was the first to contact me and told me he is fully booked and cannot see me until 10th October 2019 and all his other locations are just as bad, so I explained how urgent my GP considers it to be and my symptoms so the lady phoned the specialist direct and the specialist said although he is booked solid he will squeeze me in at Mulgrave which was where he was working that day.

My friend, whom I consider to be my daughter; drove me there, we arrived 90 minutes early; so we went and had something to eat then sat in the car and talked for a while then returned to the consulting room 30 minutes before my appointment time; at which time the receptionist told me that the specialist is now running about 90 minutes to 2 hours late because he still has 3 other patients to see before me.

My appointment was for 3-40pm so we figured we would not be called in until 5pm or 5-30pm; however to our surprise he called me in right on 3-40pm; ahead of the 3 other patients whom were before me;  so I can understand why he did not spend much time with me, because he needed to get around to seeing those other patients whom were also waiting.

Plus no doubt he could not answer many of the questions I have until after I have the PET scan

The specialist gave me a prescription for medication to fix the lung irritation which is causing me to cough up blood and wants me to take that medication for 17 days before my PET scan on the 7th October; however he only prescribed enough for 10 days so I have an appointment to see my GP today to get a prescription for the other 7 days plus a prescription for a mild sedative for me to take just before the PET scan.

Apparently how they do the PET scan in Australia is I have to "fast" from midnight, drink 2 litres of water before I leave home arrive 30 minutes early, at which time they put me in an actual bed while they inject me with what they use and I then take the mild sedative not long before they do the actual PET scan and told me I will be in the PET scan machine for 90 minutes. Unfortunately they will not let me wear dark glasses or wear head phones to listen to music during the procedure because those things could affect the imaging when they scan my face and head..

I hope they will not mind if I fell asleep during the procedure because I will not get much sleep the night before so the mild sedative and boredom of being in the machine for so long might put me to sleep

Have a great day everyone.

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Edward-

I hope the counselor can find additional help, both financial and medical for you. 

Just based on my experience with the concurrent chemo/radiation, I never really became overly sick. Some do and some don't, so I guess I was one of the "lucky" ones. The radiation had little or no adverse effect on me and the chemo, some. I always had the Chemo on a Wednesday morning. That afternoon I would go home and sleep because I was tired from sitting there all morning, but I felt good. (They give you steroids and other meds to help your body accept the chemo, which those drugs always made me feel good and relaxed). The next day I still felt fine and always went to work. The following day I would also go to work but then about noon on Friday I could feel myself going down hill and by Friday evening I didn't want to do anything but lay in bed. Saturday was full of aches and pains and generally feeling like I had the flu, but it was not terrible, but needed to stay in bed except to eat. Sunday morning was the same but by that afternoon I felt human again and then by Monday morning, I could go back to work like nothing happened. Then that week would start that whole cycle over again, for 7 long weeks. I didn't have any special diet, but you do need to keep your food intake going and not loose too much weight, it just makes you weaker and your body needs the energy to fight the cancer as well as handle the chemo drugs..

Good that you're getting a prescription for the lung irritation (infection?). 

For my PET scan a few weeks ago, I was told not to eat or drink after midnight. When you arrive and get checked in, they give you a bottle of "water" laced with contrast. You drink that over a 1 hour period. They also start an IV and inject you with a radioactive glucose. I was sitting in a chair for all of that and didn't lay down until I walked into the room where the scanner is. The PET is not much worse than the CT alone, it just takes a little longer. Yes, no glasses or headphones for the CT or PET scans, just for the MRI's. Also at least here, if you're flying or going into some government buildings, be aware that you will be slightly radioactive for about 24 hours. Here they give you a paper to show them if you set off the radiation monitoring alarms.

Best of luck to you on the upcoming diagnostic tests. Keep us posted, we're here to provide moral support whenever you want or need it, we've all needed it from time to time.

I will be posting my updates later this evening or tomorrow. Not terrible news, but it could be better. No NED or continued Durvalumab Immunotherapy for me, but maybe stereotactic radiation on my one remaining tumor. Waiting for an appointment opening with the Radiation Oncologist to discuss. Also having my biomarker tests done on the biopsy samples from Monday and from the blood samples taken today but it takes about a month to get the results!

-Ron

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