Help with medical decision.....

The friendliest place on the web for anyone with an RV or an interest in RVing!
If you have answers, please help by responding to the unanswered posts.
See posts with no answers
Mr Bojangles

Mr Bojangles

Well-known member
Joined
Feb 4, 2006
Posts
570
Location
Hamburg, PA.
Hello All:
First some background..., then questions.
BACKGROUND:
Just discharged after 3 days being treated for Atrial Fibrillation. Now under control. It's believed " OTC cough medicine" with #40 Red dye started incident. Part of diagnostic procedures were 1) Chest x-rays 2) CT test and others...
Tests (1 & 2) findings:
1) There is no evidence of Pulmonary Embolism.
2) There is a macrolobulated soft tissue nodule in the anterior aspect of the right middle lobe which measures 12 mm and corresponds to a chest x-ray. This is highly suspicious for malignancy and PET correlation is recommended.  Additional nodules in the left lung base can also be assessed on a PET scan a described above.

Lead physician (?) directed (sent) a Thoracic Surgeon to talk to me while in hospital. My impression was that he wanted me to start treatment "with his office" immediately, no time to wait...... his office would call (and has) to arrange for PET test and then do Biopsy on nodules, and continue treatment based on results. Chemotherapy has been mentioned.
To me, not enough "of my wants" in process...... these immediate actions would serve Doctor more than me.

QUESTIONS:
1) I know I have some choice in care provided, but who and where?????
2) After PET Scan completed (scheduled for Monday 1/7/2013) wife and I are scheduled to sit with Doctor (1/10/2013) and decide next steps.
I'm overwhelmed, scared a little, do not want to start incorrectly with treatment. This Doctor not affiliated with CANCER TREATMENT CENTER near as I can figure... his own practice. Should I just pray and accept treatment offered?
ANY THOUGHTS...., DIRECTIONS....?




 
I am indeed praying for you. I am afraid that i cannot I cannot offer much advice on your next steps as requested but had to post.

I have been helping my mom in her battle with lung cancer for a few years. It is scary where you are at- the testing phase. Do not lose hope no matter what anyone tells you.

They sent my mom home to die in 2011 with an estimate of days or a couple weeks to live, giving me the contact information for our local Hospice.  My mom decided that she was not ready to die and now, a year and a half later, she has already outlived one of her doctors.  She does not need oxygen and is really enjoying a normal life.

I am so sorry that you may have to face this battle, but am praying for you. Currently I am praying that there is no malignancy at all, but regardless of what comes please keep us informed and keep strong.
 
I am sorry for what you are going through right now.  You know that we are not the right people to ask advice from, right?  What we can do is support you and lift you up. I spent 20 years as a Registered Nurse, and supporting people through major life stressors was a part of my job every day.  Not this group, not your best friend, not even your spouse should help with your decision. Having said that I will point one thing out to you that maybe you haven't thought about.  Regardless of who does your treatment, you will need to get a firm diagnosis, and there isn't a big difference in how that is done (i.e. a biopsy will be needed no matter what and that is the gold standard.)  I would think that a pulmonory specialist is well qualified for this initial step, and maybe for the sake of expendiency you will choose to go this way.  After you have a firm diagnosis you can take a deep breath and get a second (or more) opinion and decide which direction feels right for you.  After all, what you know right now is that the XRay shows suspicious for cancer, not that you have cancer.  My prayers for you and your family.  Don't be afraid to reach out for whatever you need.  Keep us informed, we care. 

Beth
 
Hello Stella:
Thank you for your words of encouragement and INFO regarding "Healthcare Specialist" out in the world, they are so human.......

I'm glad your Mom is doing so well. I will keep her story in my mind as I go through this process.  Wow, you guys deserve lots of applause, story inspirational. 
Thanks again.

Hello Bingberg:
Thank you also..... your posting contains EXACTLY what I had to hear. The Biopsy is (will be) the GOLD STANDARD.
I'm going to continue with actions outlined and pray. Thanks again.
 
You are right to insist on having your own input to the forthcoming decisions and avoid rushing into treatment with any one physician. On the other hand, it appears you need the PET & biopsy and further diagnosis and somebody has to do it. You can go with the guy who contacted you, or shop around for somebody else, but it needs to be done and fairly soon. Once the preliminary work is done, you can decide to go elsewhere.  Are there other professionals in your area you might prefer? You need to educate yourself quickly as to who has the credentials and top rating for the services you need. There is a lot of info on the internet on doctors training, patient feedback, etc.

When my wife's cancer was diagnosed,  she was referred to a highly touted local oncologist, but we found his office to be arrogant and not at all helpful in our time of crisis. Nor was their proposed appointment schedule consistent with the urgency of her situation, which was life-threatening. Review of online sources found one of the top ten oncology centers in the USA within a reasonable drive of our home, so we contacted them. Night and day difference in how we were treated plus they recognized the urgency and had her in for consultation and further testing within 48 hours of our call. She began receiving treatment the following day.
 
As with any medical treatment, you as the consumer MUST be informed first.  Before you do anything, gather all the information you can muster the courage to accept.  Then and only then, make an informed decision and rest in the comfort knowing that you did everything you could to make the right decision for you and your situation. No matter the outcome.  If you know The Lord, death if that is the outcome is not the end, but the beginning.
 
As I read your post and the responses I was trying to figure out how to say what Gary said. You need the tests and you may need some treatment. What you need most is medical staff who can communicate with you, tell you the options and then help make the outcome the best for you. It's always ultimately your decision how you want to treat what they find, not theirs to tell you what you have to do.

During 31 years with the fire department we saw many patients that didn't want to go to the doctor or hospital for further treatment. Some of those folks needed to go for life threatening ailments and so we pushed hard to make them go. Some needed to go to cover our butts liabilitywise. We couldn't do every test to rule out every possibility, so the fall back advice was to have a physician take a look and make sure. BUT, the bottom line which we gave those who weren't sure is that we can't kidnap you and make you go.

With a few exceptions, (head injury, alcohol/drug use, hx of mental illness, documentation of inability to make an informed decision), you can insist that you be allowed to make the decision to treat or not to treat. To have either Dr A help or Dr B help. My dear departed mother in law believed that "whatever the Dr. said" was what she needed to do. He typically advised her to do what was most convenient for him. The best Dr in the world does not know what is best for you. He (or she) can advise you medically, but he doesn't know your other situations. Get the advice, then take enough time to think and decide for yourself. One more night making the decision of what to do may be the best thing to do.

In every event, the folks here care about you. We want you to live the best, longest life possible. Let us know how we can help.

Ken
 
Mr. Bojangles. some great advise from the people that has been posted. Remember that it is you that is being treated and what is done in your treatments might effect you in very important ways. As a veterinarian I have always felt that when someone wants a second or third opinion that they should have them. If your doctor gives you a hard time about a second opinion then get yourself another doctor. Don't delay your test and treatment (if necessary), but get the test and treatment where you decide is best for you. Your local surgeon may be the best but he will want to cut because that is what he does. Ask questions. Will you consult with an oncologist about the test results?  Ask him/her how many test that he/she has performed and how many treatment that they have performed and what were their results. This is your life and you have the right to know. If they won't give you this information, I would think about going somewhere else. I would take Gary's advise and travel if necessary.  I will be keeping you in my  prayers.

Frank

 
Well, the first thing I will do is direct you to folks who know more than I do,  Though I have SOME knowledge of what they are suspecting, it is not enough to be able to discuss the doctor's orders.. many of the folks I'm going to send you towards can say "Been there, Done that" I can not.

http://community.compuserve.com/diabetes or http://community.netscape.com/diabetes

Both are the same place.  This forum started as a Compuserve forum but jumped from there to another host when major changes happend at Compuserve. 

Though the forum is SPECIFIC to diabetes,  Several of our members are familure with many other conditions.  Some of them are more or less right where you are now in fact. Others have been there and done that.  And what's more they know other places for info.


One thing you do need is a log in for the Compuserve/netscape community forums.  If you have an AOL name, (AOL, AOL-im Compuserve, Compuserve IM, Netscape, Nestscape IM and a few other AOL properties) that will do it.. If you don't registration is free.. I'm John from Detroit there but if you PM me WA8YXM is the log in ID.

Now, do you accept this doctor's decision or do you get a 2nd opinion..... That is up to you but I must say I favor options, and 2nd opinions are.. Well, options. 


Friend of mine, diagnosed with a type of cancer where there is no cure was sent to a local specialist, who said 'Yup, you got it, you got it bad" and kicked her up to an area specialist who said,, the same thing who kicked her up to the best specalist in the country (World actually I think) who said, after confirming all the other doctor's tests and observations based on the samples they still had in storage.

"There is one recorded case of this type of cancer going into remission in all of medical history.. YOU, are it."

Which, I can tell you, She feels real good about.


One final note to ALL... I know we talk here abour safety recalls on tings like Refrigerators and Generators and transfer switches.

But there is a thread (Family of threads) on the URL's above with the name "FDA RECALLS,  The most recent two are 2012 FDA recalls and the new one 2013 FDA recalls.

I subscribe to the FDA recall list (Medial products, Food, both human and animal products) and copy the E-mails to that thread. (Full credit to the FDA in every post).
Edit: Fixed tag.
 
I'm back.
Hi Gary..... I hope Nancy is still doing good. I have been off line a lot lately. Nancy is still in the prayers of my Nancy's and Mine.

People responding as they have was very helpful to me.
The bottom line is to continue with PET test Monday, consult with Surgeon, have Biopsy performed, then go from there....


Thank you also John From Detroit,  Bucks2,    Frank Hurst,    Donn....  all inputs were meaningful to me. I was reluctant to post this problem, but it's been VERY helpful!
 
As someone who has been through many of the same tests you have described, I hope I can allay some of the fear you may have about the PET Scan procedure and evaluation. 
  • First, few, if any, doctors have access to their own PET Scan equipment, or would even know how to use it.  The PET Scan requires very complex and expensive equipment.  The scan will should be conducted in a lab associated with a major hospital in your area.  If it isn't planned that way, that would be my first clue to consult another doctor.
  • Second, the trained technicians and doctors conducting the scan will record and assess the results of the scan.  They actually provided me with a DVD/Video of the entire scan so that I could make it available to any doctor of my choice, for a second opinion.  I would request this prior to the scan, if it were me.
I guess I'm trying to say that, unless your doctor is planning to do this scan in his back room, using a Polaroid camera and rectal thermometer, you shouldn't have reason for concern for the quality of the scan or it's interpretation.

The same things could be said for the biopsy.  The determination of the presence of malignancy will be done by qualified lab personnel, not the surgeon.

Any subsequent course(s) of treatment are where you need to concentrate your efforts for education to assist in making some very important decisions.

You'll remain in our prayers.

 
I am late to this thread but you have some good advice.  When the tests are completed, take the information given and research, research and research for yourself.  I am a prostate cancer survivor of over 15 years and I think it was because I did not take any one Drs advice as gospel.  I had my family Dr, the urologist, an oncologist, another urologist - head of a large teaching hospital department and finally the staff of the City of Hope in CA before I made my decision for treatment.  A lot of time and money but I am  here a still cancer free, as far as anyone knows, whereas a lot of my compatriots are not because they believed the first Dr they dealt with on their problem.

One of the Drs along the line, said to treat the Dr as you would a plumber or any other tradesman.  He is selling a service and is in business to make money.  Remember that and you will be able to sort out the right path for your treatment.  It did work for me. 

BTW, there are some excellent cancer lists out there so search out the ones for your specific one, if in fact you do have a cancer.  Believe it or not, there are some very well known and respected Drs that provide free advice on those lists.  I probably owe my life to one of them as I got the best advice from him.
 
You have received such excellent advice from so many of our forum members who have been through it, and I agree with their suggestions, so I'll not repeat.  My contribution, as a cancer survivor, would be to tell you to take a deep breath, relax, back away from the immediate heebie jeebies, and try to ignore all advice for just a short period of time.

The diagnosis of cancer, or the possibility of cancer, is such a huge threat to our well being that it takes a while for the brain to absorb and the emotions to gain some sort of equilibrium.  It's downright scary to hear that C word!  No two ways about it.  Don't procrastinate the diagnostic tests, as many have advised and you have already indicated you agree. 

But after that .... breathe  .... give yourself some time to carefully think through the doctors' diagnosis and the treatment they have recommended.  Breathe ... deep ... relax ... think ... and then, decide ... 

If the diagnosis confirms the worst, accept the rigors of the treatment you have chosen, and fight that damned disease!  We're here to offer our support and prayers.

Margi
 
Wow.......
This forum, besides helping me get through  the learning process associated with RVing, has just helped me get "My Mind Right".
As in the movie COOL HAND LUKE. "Gotta get my mind right Boss."

Reading every one's words has put it all into the perspective of reality.
Thanks...  Tom and Margi,    Jim Godward (hope all is good with your wife now Jim),      Just Lou.
 
Jim (Mr. Bojangles)...
You have a really excellent cancer facility about an hour away from you in Hershey and I suggest you at least get an opinion there. It's the Cancer Institute at the Penn State Hershey Medical Center.  Get the CD copy of the Pet Scan and the biopsy report and make an appointment with one of their oncologists. You may ultimately decide to get some or all your treatments and doctors closer to home, but getting advice/opinions from top doctors & technicians will help you make the right decisions.

Nancy goes there twice a year for treatment as we travel north and south, so you can consider this a personal recommendation!
 
I just finished with a PM to you.....

I will strongly consider your recommendation. And you are the second person to suggest getting CD Rom of PET test. After Biopsy, I will visit Hersey Facility.
 
Jim,

I have CDs of all my recent MRIs, CT, X-rays and all my Dr's reports that are in the computers at the various hospitals I have been to in the last few years.  Right now it is a stack of about 6 or 8 CDs, but I or the Dr's can see the changes in my back, the various other reports  so that where ever we are they have all the past history.  I even have all the hand written ones back into the 80s.  Interesting reading when something comes up.  I am missing some stuff and there are a few that would really help figure out some of the recent issues but there are also a few important ones missing as I wasn't smart enough to get them at the time.

Get and keep as much as you can.  It may help 10 or more years down the road.

To explain the last comment, about 5 years ago I was diagnosed with a lung problem.  About 15 years ago before some surgery my family Dr referred me to a pulmonologist for a pulmonary function test because of some issues she thought I had.  In the evaluation 15 years later it sure would have been nice to have had the results of the previous testing.  Dr are not required to keep records more than 8 years in CA where the test was taken.  I have some other issues that probably could be better evaluated IF I had the old data. 
 
Like Jim says, get copies of Everything. I have 3 folders and a backpack dedicated to my med records. We (DW and I) carried those around to 3 hospitals for a year and if I had not had a copy of one of my right side cath's to hand to the cardiologist I would not have gotten approved for surgery.

Hard to trust Fax's to have meds sent to doctors also. I have lost and resent more med records that I can remember.
 
You must log in or register to reply here.

Latest posts

Members online

Total: 854 (members: 28, guests: 826)

Forum statistics

Threads
134,039
Posts
1,420,790
Members
139,692
Latest member
jwasilko
Back
Top Bottom