Major surgery and I am not even diagnosed?

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Major surgery and I am not even diagnosed?

by pip1948 on Thu Sep 06, 2018 01:15 PM

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I am just amazed that no headway seems to have been made in the diagnosing of Lung cancer? 

A nodule 1.2 cm at its widest point,  was found in my lung, when an MRI was done on my spine.  Since then,  I have had a CT and a skull to below the knees,  PET scan.

I am high risk for lung cancer, family history and smoking.  The CT shows jagged edges on the on the nodule, and the SUV on the PET was 3.2, with the PET scan not showing any other spots in my body. So now, I am being told that it is probable that it is cancer, mostly based on my risk factors, but not really conclusive! 

I am now scheduled for resection surgery just to find out if it really is cancer, if it is, they will continue on and remove a lobe of my lung as well as two lymph nodes. 

I am told that a biopsy on the lung is invasive and dangerous and has a high probability that it will also be inconclusive. Both of my doctors think that surgery is the best way to go.

Now the surgeon tells me that the PET scan not showing any other hot spots, doesn't mean that there aren't any?  And that the fact that no hot spots showed up doesn't even mean that this is the primary tumor. 

I am 70 years old, and I have always promised myself that I am not going to spend the rest of my life making myself ill from treatments trying to prolong my life. And I still feel that way. The moment we are born we are on our way to our death, I don't have a problem with that. I do have a problem with making myself sick and miserble right up until death.

But, if it made sense and I had a high probability of recovering and living comfortabley then I would do it. But, what I am finding is that that is not so easy or clear cut. Just to even determine if I have cancer I am going through a major surgery. I asked them, if they do find cancer are they thinking there will be anything beyond this, like chemo. The pulmonary doc says no he doesn't think so, the surgeon says until this is staged, she can't say. 

The pulmonary doctor seems to think that it is cancer and they have caught this very early, it is the primary and probably stage 1a. They take it out and that is the end of it. The surgeon is not so convinced or optimistic about all of this. 

So, I guess it is just a coin toss as to what the reality will be?

What I am starting to realize is that they really don't know. The diagnostics that they have right now, are not any better than when my mother had cancer 20 years ago. They are more expensive and elaborate, but not really that effective. 

I guess I am going for the surgery, which by the way sounds just awful! What I do about all this beyond that I am not sure? I don't know how I am going to feel if I put myself through all this and it isn't cancer? I guess, I will feel lucky?

I am really frustrated by what I am having to do to just know if it is cancer and what the prognosis is?  

Does all this seem right to the more experienced people here?

Any advice woud be appreciated. 

RE: Major surgery and I am not even diagnosed?

by kak123 on Sat Sep 15, 2018 07:38 PM

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I hope you have some answers to your questions by now. I am very familiar with several different cancers, unfortunately. The one thing they all have in common is no straight answer from anyone. Having a cancer diagnosis is scary enough without keeping us guessing. I truly believe there is no easy answer. Too many different responses via different treaments to the same diagnosis. Think the docs are just guessing have the time.

You are right, so much for progress in the last 20 years. Still seems as brutal as back then

Wishing you well

RE: Major surgery and I am not even diagnosed?

by pip1948 on Mon Sep 17, 2018 03:13 PM

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I won't know anything until well into November! Surgery set for 10-26 almost 6 weeks to wait for surgery!!

RE: Major surgery and I am not even diagnosed?

by Quiet11957 on Wed Oct 03, 2018 11:53 AM

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I seem to be in the same situation! I had my first appointment yesterday to talk about my options. Apparently, major surgery is the next step for me. I am in early stage - tumor in the upper right lobe. I'm a little overwhelmed at the moment and trying to figure out if I really want to go through with the surgery.

There is so much to think about and so much waiting time! If I have the surgery, it will be on Nov. 13th.

I wish you the best - maybe we can be a help to each other.

RE: Major surgery and I am not even diagnosed?

by pip1948 on Wed Oct 03, 2018 01:03 PM

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You say early stage tumor?  How large? How small? Has it been biopsied? What are they saying about the surgery? I mean what exactly are they going to do in the surgery? 

I have something that is about the size of a pencil eraser, with rough edges, seen in a CT scan, then I had a Pet scan, with a SUV of 3.20. Anything over 2.50 they suspect is cancer.

BuT I have been told that a biopsy may or may not be conclusive as to cancer or not, and that it is pretty invasive on it's own. 

But I have done a lot of reading and surgery and removal of the lobe that it is in has the best possible prognosis, for the lung. Lung cancer is the leading killer of all cancers and they only do surgery when they believe that there is hope to get it all?

Have you had a PET scan?

RE: Major surgery and I am not even diagnosed?

by pip1948 on Wed Oct 03, 2018 01:15 PM

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I am having Robotic surgery, that is a lot less invasive, some people go back to work in like 2 weeks with this type of surgery. The surgeon did say that sometimes things don't do as expected and they have to open you up the old fashion way anyway, but if they do go well the recovery time is a lot less.

I have accepted that this is what I have to do. If there was more area's showing up in the lungs or any other part of the body, I may not do this.  But, the pulmonary doc thinks that this is it, and they have a chance to get out and it will be gone. 

I mean basically they are goint to cut out the little section with the nodule check to see if it is indeed malignant, and if it is they will take the lobe.  So, they don't even know for sure that it is cancer, yet, but they think it is.

From the reading that I have done, they only other thing that would present like is is a fungal infection. 

So, I feel like I have to do the surgery, and see?

I don't want to wait and see because it is so small, waiting could allow it to grow and spread to other areas, and I don't want to take that chance if it is cancer.

It would be like throwing away the advantage of catching it early. No guarrentees though.

I actually have a friend that had this surgery for the exact same thing 20 years ago, they removed a lobe and she never had a reoccurrance and she is fine today.

RE: Major surgery and I am not even diagnosed?

by Quiet11957 on Wed Oct 03, 2018 02:32 PM

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The nodule is now 1.4 cm but it has doubled in size since my CT scan in July. I had the PET scan last week and it 'lit up" with SUV 5.7.

Yesterday I met with the surgeon's nurse practitioner and she seems to think that he will want to remove the top lobe of the right lung because of its location (deep, inner side). I've read that this is a very painful surgery with a long recovery time. I am also concerned about my lung function being considerably diminished after the surgery.

RE: Major surgery and I am not even diagnosed?

by pip1948 on Wed Oct 03, 2018 03:29 PM

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That is what they are doing with me also, they are going to removed the top lobe as well as two lymp nodes that are closest to it. 

I have had a lung function test and my lungs are normal funtioning right now, and while there may be some loss of function they don't expect it to be significant. 

As I said, the robotic surgery is much less invasive and makes the recovery time less. Maybe you should inquire about that and see if it is possible? There are 3 types of surgery that are available for this .. the old fashion kind where they open you completely up, VATS which is with a camera inside and the surgeon seeing what they are doing by camera, using a couple of small incisions, and the other is the robotic, which also involves a camera, but it is small robotic hands that are inside, and involves a couple of small incisions. 

Have they done a full body PET and show no other " hot spots"?  If so, I think the procedure of the surgery and the loss of some lung function might be worth it. At least that is how I am looking at it, right now. 

How old are you?

RE: Major surgery and I am not even diagnosed?

by pip1948 on Wed Oct 03, 2018 03:39 PM

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On another message board I talked to two people who had the VATS surgery and one of them was 65, and she was back at work in 2 weeks.

So, I am having the surgery and hoping for the best. 

RE: Major surgery and I am not even diagnosed?

by pip1948 on Wed Oct 03, 2018 03:47 PM

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I guess the way I am looking at it right now is.... if there is no other cancer anywhere else, this is worth doing.  Once they remove the nodule, it will be sent to a lab, and it takes a week or more I am told, to determine the kind and the staging of the cancer. Like small cell or large cell and 1,2, 3, or 4.  And that is what will really tell the tale on my future. But until I have the surgery none of this can be determined. So, whether I need to go through more and whether I will put myself through more, will be determined once they do the surgery. But, I feel like I have to have the surgery to know all this. 


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