Swimming in Questions

[MrsEmondSr]

My name is Marie, and I am going through a very slow process to determine if the mass found in my lung is or isn't cancerous. It is very frustrating and scary. I have lost 3 siblings to cancer, 1 of which was lung cancer. 

My problem is I was at my home in NC spending time with the grandchildren, and ended up in the ER in January for what I thought was a heart attack, they did a CT scan and said they found a lesion in my right upper lobe and to have my family doc follow thru with it. Now, my insurance is based in Canada (my husband is RCAF and they're allowed to remain in military until age 60) but the doctors there, refused to accept the CT scan from the US and scheduled me for another one a month later. This scan showed a slight increase in size and they brushed it off as the people in the US don't know how to measure in CM's. Needless to say the doctor I went to insulted me with her attitude towards the US and lack of concern despite me telling her of familial history. I lashed out and she promptly referred me to a pulmonologist / oncologist here in Quebec. He sent me for a PET scan, which I had done 2 weeks ago tomorrow. And the girl running the scan said the Dr who reads the reports wanted me to rescan after an hour to see if the areas that lit up in the scan dissipated from the radioactive material. One of those area's being my right lung. 

My first question is, is this common to rescan an hour after the first one? And my second question may seem a bit strange, but has anyone encountered a headache that won't be relieved with medication after the scan? I've had a headache for 2 weeks now with little to no relief from Tylenol, Motrin or even Tylenol 3 which they gave me when I went into emergency room last weekend. 

I have reached out to the doc who ordered the scan and I am to see him Monday (3rd June) and hopefully get some answers. 

My 2nd question is, being I have siblings who have died from cancer (1 of which was lung cancer) how much do medical professionals feel this affects the likelihood of my scans coming back positive? 

I have so many more questions, but now that I sit at the computer I cannot remember them. I can tell you I am a very scared individual with minimal support which is why I am reaching out to this group. My husband (God love him) he is a wonderful man, but due to the way he was raised he feels if he blocks it out it won't be real. And while his hugs are a little tighter right now, he can't bring himself to have a conversation with me about what I am going through. And our children (both adults in their 30's) we haven't told them yet as we want to know for sure what it is or isn't before we worry them. 

Thank you all in advance.

Marie E.  

[Steff]

Hi Marie,

Lung cancer screening is hard enough to deal with when things go right and the waiting is a week or two.  I'm sorry that you are going through these things with your docs.  Not only do you have the stress of dealing with a possible cancer diagnosis, you have the stress of dealing with rude docs - no wonder you have had a headache for 2 weeks.  That being said, my mom has gotten a headache during PET scans, but it goes away a few hours later.  When you meet with your doc on Monday, definitely bring up your headache issue.  It could be from a variety of things, stress being one of them.

I have not heard of having a repeat scan the same day, but I am just one person.  I am sure you will hear from others who will share their experiences.  As far as "growth" between scans, your lesion may have grown, but it also may look bigger/different based on how you were positioned for the scan and how the scan took its pictures.  At this point, you have every right to be concerned, even freaked out.  But I would not take the fact that they recommended a 2nd scan an hour later or the fact that the lesion appeared to grow reasons to freak out even more.

The reality is, you either have lung cancer or you don't.  While you are awaiting your appointment Monday, I suggest writing down the questions you have, like - Why the 2nd scan, Has it really grown, What are the next steps, etc.  LUNGevity has a great web page that has good questions to ask.  You can find it  here.   This is also a good place to do some more research.

Please know that we are here for you throughout this journey.  You will likely meet some long term survivors and those who are relatively new to the battle.  I have been a care advocate for my mom since her lung cancer diagnosis in 2015.  It's been a bumpy ride, but she is still here LIVING her life.  She continues to do the things she loves in spite of lung cancer.  And should you turn out to have lung cancer, you can do the same.  

Take Care,

Steff

[MrsEmondSr]

Thank you Steff. 

[Curt]

Hi Marie.  I’m sorry to hear of your troubles.  Discrepancies in lesion sizes from scans is common.  Mine measured up or down 2 mm.  I’m pretty sure the medical world uses metric all over the word, including the US.  I didn’t get headaches from PET scans but have heard of others who did.  Lasting weeks is something you should discuss with your doctor.  Stress could definelty cause it, knowing it’s nothing but a headache will help with the stress I’m sure.  

I have a significant family history of lung cancer.  It’s something I am very focused on.  During my monitoring the doctors did consider it.   Familial history is given some consideration but still isn’t looked at as a major factor in likelihood of it being malignant.  

The uncertainty during the monitoring phase is stressful.  It is a slow process.  It sounds like you are keeping up with it though.  We are here to support you if you need it.  Squeeze your husband back just as hard.  Those who can’t show it on the outside often feel it much harder on the inside.  

Hang in there.  

[Isabelle49]

Good to meet you Marie. Like you, I don’t have a definitive diagnosis yet either. I had an abnormal CT Scan, no PET Scan though. It seems EBUS (endobronchial ultrasound biopsy) trumps the PET Scan). I fired my first pulmonary doctor for being very abrasive and having me all but dead before November before even having the definitive diagnosis. (I so feel for people who are not bold enough or educated enough or whatever to question what they are being told if they don’t understand. And those who don’t have the strength to insist on being treated with dignity and respect). I do like the new pulmonary doc I saw yesterday and am scheduled for biopsy this coming Monday. There is a certain amount of stress that accompanies the wait though I am expecting the worse. Like you, I have not mentioned anything to my adult children and only have two friends who are aware. I plan to put of telling my girls for as long as I can, feeling that I don’t want my life or problems to be their burden. My best to you.

[PaulaC]

Hello Marie, I wish you were here for reasons other then cancer but I know everyone will help settle your nerves. Steph had a good idea on looking at the section here on questions to ask on your Dr visit. I know I was so overwhelmed that had I not printed out the questions I would have gone blank during the visit. 

I’ve had a number of pet scans but don’t remember head aches. Maybe like Curt said it’s nerves. Oh my gosh my nerves were shot waiting for test and results and my thoughts were all over the place. I will tell you that it does get better the more answers you get. 

As for support from hubby if he’s like mine he’s probably more worried than you think. My husband still has a hard time with it but gives me lots of hugs and love. 

Take Care and I pray you get some answers soon. 

Paula

[Tom Galli]

Marie,

I've never had a repeat PET an hour or anytime the same day after my first scan.  I've had perhaps a dozen PET scans as a lung cancer survivor and have had headaches after several.  Stress was likely my problem; perhaps you are having an allergic reaction to the iodine isotope used as the scan media. 

Of course, family history is something your doctors should consider, but I think lung cancer is driven more by lifestyle risk factors than genetics. 

Steff suggested reading into our disease and our LUNGevity Lung Cancer 101 is a good start.  Here is where you find it.  When you have your next PET scan, this may help you understand the language of the radiologist who reads the scan.

This is a good place for questions and you are most welcome here.

Stay the course.

Tom

[MrsEmondSr]

15 hours ago, Curt said:

Hi Marie.  I’m sorry to hear of your troubles.  Discrepancies in lesion sizes from scans is common.  Mine measured up or down 2 mm.  I’m pretty sure the medical world uses metric all over the word, including the US.  I didn’t get headaches from PET scans but have heard of others who did.  Lasting weeks is something you should discuss with your doctor.  Stress could definelty cause it, knowing it’s nothing but a headache will help with the stress I’m sure.  

 

Thanks Curt,

I agree some size discrepancies are normal, but the first CT I had in NC was showing the lesion to be 1.5 CM and when they scanned me in Quebec in February (only 1 month later) it had grown to 3.25 CM. Which is why when the Doc I was assigned to see that day pretty much said the folks in NC basically didn't know how to use the metric system correctly and they were wanting me to wait 3-6 months then scan again. I kinda lost my temper. (usually in Canada it takes a long time before being able to get an appointment with a specialist) I received a phone call the next day.  

 

Isabelle,

Thank you, I have never heard of this EBUS, when I got to see the pulmonologist Monday I will certainly ask if this is available up here and ask that he do this. Being I am reading that most folks have never been rescanned within an hour of the first scan (or ever for that matter) I am going to be skeptical of what they tell me the results are now. 

 

Tom,

Thank  you as well. Yes I have looked at the links Steff provided (I was unable to find anything about possible headaches after the scan) which leads me to believe possibly the scan may have just exacerbated my Chiari. The tech was spending a lot of time scanning my upper lymph nodes and around the thyroid area (due to the recent swelling in my neck region). As I stated in my reply to Curt, the rapid growth of this "lesion" is what really has me scared. Having something doubling in size pretty much in that short of time surely cannot be a good sign. 

 

Thanks everyone, for your input. Being those of you who have had PET scan and only seemed to acquire a stress headache this is telling me to make sure my Doc actually look into this and not just brush me off or want to prescribe pills and send me on my way. 

I will update once I know more. Again; thank you all!

[LouT]

Marie,

Sorry to hear about your situation, but glad that you found this site.  The doctors you're dealing with seem to be preoccupied with differences between countries, but I hope that their main focus is an accurate diagnosis for you.  In my case the fact that my lung nodule had grown a couple of mm's was enough for my pulmonologist to request further testing which led to my cancer diagnosis and the surgery that presently has my body clean of any cancer cells.  During my diagnosis phase I too had a PET Scan and cannot remember any request to take a second an hour later.  If the cells are showing absorption indicating hyper-metabolic cell activity I'm not sure what the purpose of a second scan would be.  I did not recall any headache after the PET Scan, so I can't help you there.  You should ask the doctors about all of these things, such as the second scan, so you are aware of what is being done on your behalf.  Please don't be shy about advocating for yourself throughout the diagnostic and treatment process.  I was blessed to have a set of wonderful doctors from my primary care to the pulmonologist and finally the thoracic surgeon.  

This is surely a scary time, but my best advice is to "stay in the present", deal with each days news as it comes and take care of yourself (diet, sleep, exercise and relaxation) as all of these things will be important as you move forward on this journey.  I personally also relied on my faith as well as family (my own and the folks on this forum) to help get me over the worst times I've ever had in my life.  I too am 68 and cancer is the major cause of death in my family (mother, father, uncles, aunts) and the doctors here did find that fact relevant during the diagnosis phase.  

I'm not sure where you are in NC (I live outside of Charlotte), but if you choose (or can choose) to have care here there are great locations throughout the state.  I went to Levine Cancer Institute in Charlotte, but I understand that Duke University (Chapel Hill) also has a great program and others are here as well.  I'm guessing that a choice like those would depend on your insurance, but I just wanted to make that information available.

Stick with this and make sure you "self-care" during this time.  You'll find some great people and their support here and I pray for the best for you.

Lou

[MrsEmondSr]

3 hours ago, LouT said:

I'm not sure where you are in NC (I live outside of Charlotte), but if you choose (or can choose) to have care here there are great locations throughout the state.  I went to Levine Cancer Institute in Charlotte, but I understand that Duke University (Chapel Hill) also has a great program and others are here as well.  I'm guessing that a choice like those would depend on your insurance, but I just wanted to make that information available.

Stick with this and make sure you "self-care" during this time.  You'll find some great people and their support here and I pray for the best for you.

Lou

Thanks Lou,

I would seek treatment at Duke (my daughter works there at the Big Duke)I am closer to Fayetteville area;  however, my provincial healthcare and my supplemental coverage through my husbands military coverage prohibits me from doing so. Which is why I am subjected to dealing with the Canadian medical system. (which trust me leaves much to be desired, especially now that my husband has been posted to Quebec) So far they are the worst. On top of long wait times, they feel if you aren't from here they don't have time for you. (I have been on a waiting list for almost 3 yrs now just for a family doctor). But I digress. At least by me losing my temper and making it clear to the walk-in clinic doctor what I clearly thought of their system, I was able to get to a doctor that seems to actually take his Hippocratic oath serious. Being I do have other physical conditions, I have applied for SSD. And am hoping I can get this through and I can return home to seek medical treatment there. (So far I am on my 1st reconsideration, their reason for denial the first time was I wasn't seeking medical attention in the US and didn't have any US healthcare coverage, which was confusing to say the least). 

I am hoping my doctor will be able to set a clear plan for treatment Monday should this be necessary.  

Thanks again,

Marie

[MrsEmondSr]

UPDATE:

Well, after yesterdays appointment it has become painfully obvious to me that I NEED to find a different doctor. Got the results of my PET scan, My doctors exact words " Well, it's cancerous mass, but it's not big enough to have any concern about at this time; we'll have you rescan in 4 months and see if it has grown any further or spread. At which time we will begin treatment". 

Are you kidding me??  Is my life not worth saving in his eyes? Or does this guy just not understand that I could live much longer if we start treatment in the early stages?? I mean, (even though it was by accident it was discovered) it was still discovered when it was only 1.5 cm mass, now its doubled and VERY treatable!. I am beyond furious right now. 

I will also be weighing my options and contacting my insurance here and see how I can go back home to get treatment in the US. Trust me, while socialized medicine seems to be a "good thing"to most people, it is NOT. Most doctors are a joke here and just want to prescribe you pills and send you on your way. There are only a handful that actually care about their patients and it seems only that care comes if you are well off financially. Being my husband is military and we've just been posted here to Quebec, I am on a 4.5 yr waiting list just for a family doctor. 

I apologize for my rant, I am just beside myself at this point!

Marie

[Rower Michelle]

Hi Marie-

Yup, you got that all right.  Time to fire to doc! There’s lots of treatment options available, your instincts are spot on.  You’ve got the fighting spirit which is required to win this battle.  Keep making LOTS of noise as the squeaky wheel gets the grease in this game.  Scream away, that’s what we’re here for.  

Michelle

[LouT]

Marie,

I couldn't agree more with what Michelle said; you need to be the leader of your treatment team.  I've read stories here where folks have advocated for themselves and likely saved their own lives.  Please do all you can to get treatment back here in the US.  I lived in Michigan for five years and met many Canadians who came to the US for treatment then and that was back in the 90's.  It seems the situation may not have improved, but you do all you can to get treatment moved here.  You mentioned Duke and that is one hell of a place to go for this treatment...they are a learning medical school and a center for advancement trials and new approaches for cancer.  If Levine Cancer Institute wasn't so highly rated in Charlotte I would have made the trips to go there.

Keep up your efforts to get a solid team with a sense of urgency behind you.  We're pulling for you.

Lou

[MrsEmondSr]

Thanks Michelle & Lou,

I honestly could NOT believe what I was hearing yesterday! I just bit my tongue because I was about to lose my temper in a manner that would've most likely ended with me being carted off in handcuffs (I exaggerate) actually my husband was with me and he pinched my arm to keep my mouth shut. But on the way home he agreed it is time to seek a different doctor. I have put in a call to my supplemental insurance through DND and am waiting for them to get back to me with some sort of a decision.

As soon as I get some sort of response I will update on this subject. Meanwhile, my work continues to try to get a way to get referred to another pulmonologist (no easy task being I have no family doctor) . Thanks folks!

Marie

[Curt]

Definitely time for another doctor.  Steam is coming out of my ears reading this.  I’ve heard of waiting to see if a mass grows as part of a diagnostic plan but I’ve never heard of the wait and see lung cancer treatment plan.  If you are sure it’s cancer then it’s time to start treating it.  A 3 cm mass in just one lung could very likely be removed with surgery.  Maybe seek out a thoracic surgeon or a cancer screening center instead of a pulmonologist.  Pulmonologist’s know lungs but they are often not experts on cancer treatments.  A thoracic surgeon is who would perform the surgery if that is an option.  Is Montreal an option for you?   

[MrsEmondSr]

Good morning Curt,

I am actually across the river from Ottawa. (So Montreal is about 3 maybe 4 hrs from me traffic depending). My husband and I have decided regardless of what our secondary insurance decides, I am going to head down to NC and seek medical attention there. Our daughter who works at Duke Hosp. is going to talk to the oncology team there and see if I need to bring my scans with or if they will just contact the hospital here and get them directly. 

I have never seen such incompetancy in my life. I know doctors here don't get paid much, but this man is supposed to be a specialist (which means he is at liberty to charge a more substantial fee to the gov't for his services. Whereas the family practitioners are on a set fee schedule. Which is why so many of them have left to practice in the states and other countries. (So much for that Hippocratic oath huh?!) My search for a different specialist would be easier too if I actually had a family doctor, but the waiting list is long and while other provinces assign a family doctor to military families as soon as they get their health card for the province, Quebec has their own ideas and I am 2 yrs into a 5 yr wait. I will be heading down to NC this weekend. And my eldest son is driving up from Florida to come and help me once I start treatment. My daughter would but she has my grandchildren to take care of and works full time. 

I will update again once I get settled and things get taken care of. 

 

Thanks again everyone,

Marie

[LouT]

Marie

As I read your post it makes me think of the people here who are pushing for socialized medicine and I shutter to think that a government who can't keep roads in good repair might actually hold my life (or the life of a loved one) in their incompetent hands. Whew! A scary thought. 

So glad to hear you're going to Duke. I believe you'll see a shocking difference in the care given there, especially with your daughter being a part of that family. 

I'm looking forward to your next update. 

Lou

[MrsEmondSr]

Hi everyone,

I have an update (not good news for me) the headache that started when I had the PET scan (1st of all I still have the headache) and I was sent for an MRI to determine the cause. I have a tumor about the size of a golfball just about in the center. So a lot is going to be going on, I will update as I can.

 

Thanks for your support.

Marie

[Curt]

I’m sorry Marie.  That is scary news to receive.  Just know that there are treatment options and a way forward.  I hope you got into Duke. There will be a lot going on.  Hang in there.  We are here for you.  

[Steff]

Dang it. I'm sorry to hear this.  

[Laurel]

I am so sorry you are going through all of this. You are right to be a strong advocate and demand the best treatment.  Hopefully, you can get in to treatment in united states. At the hospital, seek out a "patient advocate".  Although a part of hospital, their job is to support you and move you forward. I hope you can also get a primary physician.  As I went through treatment, it was my primary physician who helped me through pneumonia and other side issues.  Keep fighting!  Sending prayers and hugs.

[Rower Michelle]

Hi Marie-

I’ve been buried in lung cancer research these last few months. While brain Mets are very common upon diagnosis- they are not a predictor of overall treatment outcomes. 

In the book written by Diana Lindsay, “Something More Than Hope” she talks about her experience with brain Mets 14 years ago!  Today she remains cancer free or NED (no evidence of disease). 

Keep us posted- so glad you are being treated in the US. 

Michelle

[Susanrae]

Hi Marie:  Susan Rae here.  Very sorry to hear the bad news; but, on a positive note, you are a member of a great group that will provide you with good information and good support...both of which are invaluable while fighting this fight.  In April 2019, I was diagnosed with Stage IV lung ca with brain metastasis.  Today I had my second immunotherapy treatment.  I don't know what I would do WITHOUT the support and information provided by the LUNGevity group.  The lackadaisical attitude of some of the healthcare professionals you have encountered in Canada is awful; very good to know you will be treated in the US.  Take care now, Susan Rae

 

[LouT]

Marie,

I've only been online occasionally lately so I didn't get to see your update until now.  I'm sorry for the news, but it is all the more reason to get a a responsive and resourceful medical team around you.  I was blessed with the folks that I had and you deserve that type of treatment as well.  Please continue to update and know that we are all pulling for you.

Lou

[Tom Galli]

Marie,

Oh my, June has not been a good month for you!

I'm not sure I have suggestions for speeding your medical care in Canada.  I'm a retired US Army soldier and still know a number of Canadian Forces soldiers and all complain about having to get in line for medical treatment. And, adding insult to injury, now brain mets!

I do hope you can make the Duke connection work.

Stay the course.

Tom