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You are NOT going to believe this/possible Cancer misdiagnos


Guest Mrsmanny

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Guest Mrsmanny

Outrageous New Information

Dr. Hebeler called me at 2:30pm today, he was in surgery and someone had brought him up a 2nd pathology report.

The 2nd Pathologist said it might not be cancer, it might be an infection.

They need another sample.

Dr Hebeler will have him come in on Monday Morning to do surgery to retrieve more of a sample.

This is not saying it is not cancer…on the other hand…it's not saying it is.

We are floored.

Absolutely floored.

We are going to enjoy our weekend and accept our journey either way. It is what it is, deal with it, move on...

If this is an infection, what the hell is it?

I have seen online false positive PET scans for (not cancer) infection…however, this still could be cancer.

We are on the most random roller coaster of our lives.

Don't know what to feel, a sigh of relief? Maybe, maybe not?

Anyone experienced anything CLOSE to this?/?????

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Oh NO!!!

I am so sorry that you are going through all of this!!

Also, I am glad that you have the maturity to get through this!

Yes. My sister went through something very similar. It is horrifying to say the least. She had a radiologist that said that she had cancer in her chest... When she told me this, I started to have nightmares. We had lost so many members of our family that year and then my sister too?? I felt she was doomed from the start.

She was scheduled for a biopsy with a surgeon and the surgeon questioned the first radiologist. He had another read and the 2nd read said nothing out of the ordinary.

Well. You don't know my sister. She had just lost a baby to SIDS. And she was a worrier before all of this and obsessed anyway about her body functions. For the next two years at least, she suffered with wondering who was right... the first radiologist or the second. She constantly worried and wondered when the cancer was going to kill her and obsessed with any ache or pain. It was a terrible ordeal for her. This is when the panic attacks for her began.

I hope that you two don't have as rough a time of it as my sister. I am hoping that it is an infection. Please God let it be an infection.

However, this sort of misdiagnosis would be very cruel if it were intentional (which it is not). Nevertheless. You have already suffered the trauma and for that I am sorry for what you are going through.

Cindi o'h

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Guest Mrsmanny

Thank you for your prayers...this experience has made my husband a believer in the power of prayer...We've prayed the Dr's have wisdom also...He is shocked by people praying for him...all over the country...shocked that people would care Thank you!!!!! Je's overwhelmed...he's a shy guy who sits in the corner at parties...my sweet baby...

So many things running through our mind.

We had considered starting chemo and forgetting a second opinion the day after we were diagnosed with Squamous Cell...

Thank God We didn't, thank God someone else looked at that slide.

It still Barks like a dog, and acts like a dog, and wags it's tail like a dog, it still could be a dog...but if it's just a hairless cat.... :) I'll take it.

We are tring to to get our hopes up...he's very rational and doesn't want "false hope"... but hope is hope...I've seen on the internet that PET scans can show False Positives...do those cases match this? Who knows...

Thank you....

I pray I don't have to stay in his LC world...once we get through this....either way we will do something...anything to help people through this horrible diagnosis the way you all have helped us. One way or another this was meant to happen...LC was meant to be brought to our attn whether we have it or not... we would not have known about it otherwise nor would we have honestly bothered to care.

I hope you realize, all of you, that just by posting here you are making such a difference in someones life. More of an impact than most others have had on our lives throughout...

Thank you.

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Dear Mrs. Manny,

I'm praying for an infection! I had exactly the opposite. They kept telling me it was an infection, all the while it was cancer that caused the lymph node to swell to the size of a volleyball! I'm really looking forward to a new post from you & no offense, I really hope you find yourself no longer in need of this site.

That would be a beautiful change!

Hugs & Prayers,

Melanie

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Guest Mrsmanny

Last Week I sat in the same waiting room I sat in today while my husband was in surgery.

Last week the thoracic surgeon came out of surgery and told me my husband has Squamous Cell Carcinoma.

This week the same Dr came out of surgery from taking a 2nd biopsy any told me...IT'S NOT CANCER.

Its an infection of some kind....

don't know what yet.

Thank you so much for all your help and support.

You people posting here makes all the difference to people who are diagnosed...I can't even begin to thank you for everything you all have done...will try to...there was a reason you, this community was brought to our attention...

Thank you.

Thank you.

Thank you.

Your stories of survival, of hope... made all the difference to me and my husband...

Thank you.

We just got home from the hospital...will talk to you all soon.

Thank you, you are all in our prayers thank you for placing us in yours. Thank you.

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Dear Mrs Manny,

This is the most wonderous thing I've ever seen! God knows we see miraculous things here but this tops them all! I am so elated for you, I'm in tears. Now for the poopie part, yeah, you had to know it was coming... I still think I would seriously consider one more opinion. Heaven forbid my skepticism but I'm sure the better safe than sorry motto might apply here.

May God bless you & your family,

Hugs & prayers,

Melanie

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Guest Mrsmanny
Are you still thinking about getting a second opinion? Might not be a bad idea.

You are absolutely right. A second opinion, is NOT at all a bad idea, just last week it was cancer, and not just cancer, cancer with a NAME & A STAGE! NSCLC Squemous Cell Carcinoma Stage IIIb...

We are waiting for the official report... I will question it to my hearts content... if I have any doubt, I will get another opinion, they have the biopsy at the same hospital we will be treated at for 'whatever' it is...so I will question our treating physician and ask him to take a look first hand.

I've seen on the internet false-positive PETscans for certain types of infection, including Sarcoidosis...where some of the people on boards like this actually say they wished it would have been cancer. That leads me to believe, they have no idea what "cancer" reallly is, but also shows me some level of severity of the disease.

This could be Sacrcoidosis, Tuberculosis, or so many other things... I'm still scared like hell...

Last night after I posted I thought about and prayed for all of you. We no longer have to be in this "C" world and you are still here... I just can't get over it. As I said before, you were brought to our attention for a reason. We wouldn't have had a clue or cared that this world existed. But you are here fighting and helping so many people. People you've never met. You are this worlds modern day heros.

You are todays warriors.

I feel as though reading your stories I'm reading a modern day war story, where the winners win by suprise attack, or by using means of warfare that no one had discovered or thought of before... I thank God for your daily victories and your abilities to help others.

Regardless of the final outcome, today, here, now, you all are a modern day miracle helping others.

Thank you!

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Wow.....What a relief! This is one of the few places where folks believe that serious respiratory problems like Sarcoidosis/Infection is GOOD NEWS! But it is good news. And I am so very happy for you both. Hoping that the docs have good answers for treating your husband, and that he is soon on the mend.

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Guest Mrsmanny

No kidding, Feels vicious but a relief to say, honey, I hope you have TB :)

Talk about statistics! Our oncologist told us there was only a 2% chance this could be an infection!!!

2%....

Statistics are crap.

We are people! :D

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MrsManny, you are one awesome gal.

I love your spirit.

I just saw this post. I don't go to this forum that much since my husband has SCLC. But JustaKid told me about it and I looked it up. WOW! Yes, you are right, we are not stats but people and anything is possible if it's possible. And anything is possible with the power of prayer and God's Will.

I'm so glad it's not cancer. now I hope it's something easily dealt with. Please please keep us posted!

Karen

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Guest Mrsmanny

More new information

I don't know how you guys are able to do this.

We just got back the final pathology report...(even though they are still doing more testing)

The first path report still says cancer.

This one says "no cancer in lymph nodes"

but they don't know what it is?

Still!

Negative for TB

Negative for Fungal Infection

looks like probably not sarcoidosis either.

They even still think that what is in his lung might be cancer.

I can't believe this.

What is all of this>? Is it all just guess work?

All we know now is that if he does have cancer it hasn't moved to his lymph nodes but could be in his throat?

I just can't belive this!

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What a ride! It's hard but wait for all the tests and "smears" to be done! When I was first dx I was talking to a lady about her brother-in-law, there was something growing on his lung and they thought it was lung cancer, they did exploratory surgery and when they got in there his lung had this stuff growing on it. They carefully peeled it (like an orange) and his lung inflated and he is fine today. They monitor him as if he has cancer with scans and such.

Doctors thought my husband had bone cancer right around the 09/11 attacks, durring exploratory surgery they found that he was growing "armour plating" around his spine (that's what they called it), they broke it all away and monitor him like a cancer patient.

There are somethings that may just have to be treated and have no "name". It's a mess! But strange things happen.

Hang in there!

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Guest Mrsmanny

Thanks Beth, I know you're right.

I'm frustrated because there has been no biopsy of the lung, and apparently biopsies are the only "definitve" ( ha ha I laugh at that word) way to know what the heck it is!

The PET scan was supposedly definitive (less than 2% chance it wan't cancer) that there was cancer...

The CT Scan used words like "Metasteses" and "Primary Carcinoma"

Our Primary Care Physician leads us to believe (though very concious legally of what he says because he'll say things like "I never said it wasn't cancer") that this may be some kind of chronic lung condition...

I sure hope so...

Just like you said it would have to be monitored just like cancer... then again, is it just plain cancer?

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Oh you poor, poor dear. God knows I know how frustrating this can be. I was back & forth to darned near every specialist for every test in the world for 3 or 4 years trying to find out why I never felt good. I sure don't want to sound discouraging but this all sounds so familiar to me. Every time I had yet another inconclusive test, they would up my antidepressants & send me on my merry way. By the time they finally nailed mine down, I was told that I was already in a very advanced & very aggressive Stage IV NSCLC which the previous week they had called a nondiscript viral infection. It presented itself as Day #1, a pea size lump on my neck: day #2, a grapefruit size lump on my neck: Day #7, a large volleyball size lump on my neck. That is why they call it the "Practice" of medicine. At first, I was so da&^%$ angry, I wanted to sue every Doctor whose doorstep had the unfortunate adventure of having my feet cross it. That anger helped me to get through that initial shock. I feel God working me through all these various stages that are inevidably going to pop up along the way & often now, I can see why He previously put something in my pathway. To better equip me for this journey.

I guess the best I can do for you at this point is to quote as best I can remember, something that Becky said earlier. "Life is terminal." It's just what you do with it inbetween conception & finish that counts. I've found such an inner strength & peace since I came to terms with that. My life is so incredibly beautiful right now & I have absolutely no intention of going ANYWHERE for quite some time. While I know it is in Gods hands, there is a lot of fight & might in me. I've seen first hand how much that counts for in quality of life. I've simply made up my mind that come up's or down's, I'm going to strap in for the ride & enjoy every moment that I am given. Since I came to this "new reality" of my state of being, I am TRULY ENJOYING my life for the first time in my life. I've also found that with this attitude adjustment has come the most peace & comfort for myself & my family. I find myself having the best times of my life now that I have given myself permission to Live, Laugh & Love.

It may seem as if I am rambeling but if somewhere within this, you can find even one tiny spark that will ignite, then I'll be happy. All is not hopeless. Just know that I really am having the best time of my life right now, hard as it may be to believe. Come what may with you & your Mom, you may find as I have, Cancer be da*#%&! I'm going to enjoy the heck out of the life I have everyday! Each day has become a special blessing to me at long last.

Hugs & prayers,

Melanie

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