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question about surgery, future cancer spread, etc.


Guest mgee

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Guest mgee

I first joined the forum when my mom was disagnosed in May. First of I just wanted to say thank you to those that responded to my post. Your support has made this whole thing more bearable.

Just to recap, my mom is 66 and doesn't have any symptoms from the cancer except for that one time in April that she coughed up a tiny bit of blood. Since then, she's taking herbal supplements to boost her immunity and she says that she feels great. She's still working on her garden every morning.

At the time of the diagnosis, I was in my 9th month of pregnancy. Since then, I've given birth to my son and mom has gone thru loads of test to the extent/spread of the cancer. The first test was the abdominal CT scan which has come up clean. Then, they did a full body PET scan which showed a tiny dot (too small for them to see what it might and also too small for any type of testing) in her right lung. Her surgeon believes that surgery to remove part or all of her left lung, depending on the exact location of the tumor which he won't be able to determine until he goes in there. I'm very grateful that the cancer doesn't appear to have spread, but one of the doctor said that given the size of the tumor (6 X 3 X 4 inches) that it probably has already spread but just isn't showing up. Of course, he was also the one that told my mom, after the biopsy and no other tests, that my mom probably has 12 months left. I'm trying to push his negative comments re the cancer having spread out of my mind, but there are times when that's all I can think about. I'm very grateful that thus far it appears that we have caught it in time.

I have a couple of questions/fears that I'm hoping I could get some insights on:

1. Is is common for a cancer to have spread and not be picked up by a PET scan. I thought PET scans are very sensitive and if it picks up nothing, you're in pretty good shape.

2. Could anyone tell me about what to expect from the surgery if the surgeon removes her entire left lobe? What should she expect re length in the hospital, side affects, recover time, life after surgery, etc. I really know nothing about this surgery except that it's can be very tough on the patient, whatever that means.

3. We were never given the stage. We were only told that it's lung cancer, type Adenocarcinoma. Is it type I since it doesn't appear to have spread or could it be higher b/c the tumor is pretty big size.

Any insight to any of my above questions/concerns or just general information/support would be greatly appreciated.

Thank you again,

Margaret

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Dear Margaret,

It seems very strange for her doc to tell you her prognosis before he even knows for sure what is going on. Get a second opinion. As for the surgery, it took me about a month to be able to do much....but I went to Las Vegas at 4 weeks. I slept in my recliner for weeks and kept a small pillow handy for coughs and sneezes. It helped to hold it to my chest for my breathing exercises as well. I woke up in the hospital with tubes coming from my side and am told that is very normal. They took those out in a few days....I left the hospital in 5 days. Each person is different and you can't expect that everything will be the same for all, but if they can get it with surgery that is the best route to take. Much better odds with surgery.

It is always possible that some cells are not detected on a PET scan. But there seem to be no more tumors....that is a very good thing. I had radiation and chemo after surgery just to make sure it was all gone. I still have check ups every 3 months and get anxious each time.

I wish you the best and wish I could be more help. You have found a wonderful place to ask questions and I am sure others will have more advice to give you.

Best of luck to you.

Nina

aka Nushka

PS. Tell her to be sure and take her pain meds. Pain will keep her from doing her exercises and walking and she needs to do that to heal quickly.

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I am not sure how they can say it is Adeno without a biopsy. PET scans and CT scans can NOT tell the type of cancer.

A PET scan is about 90% accurrate and I would think that the big tumor would "light up". Did the big tumor show as a "hot spot" or light up?

If it didnt it is either benign or necrotic (dead). Sometimes tumors grow so fast that they actually strangle the blood supply to themselves and parts of the tumor die.

When the tumors die like this they dump a lot of toxic stuff into the body and I think may cause inflamation. I think these statements are true, but I would talk to the doctor and get more info.

I would get a 2nd opinion very fast

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Guest mgee

sorry. I didn't make myself clear. All the tests that I was refering to were done after the biopsy where they confirmed that it was lung cancer. At the PET scan showed, besides the cancer in the left lung, a "dot" in the right lung that they said it's too small at this point to figure out what it could be.

I know that this is huge surgery and it will take some time for her to recup, but I have no idea how long. The surgeon believes that more than likely, he will have to remove the entire left lung, so I'm concerned with what that means to her health in the future. My mom is really active and I'm afraid that the longer it takes to recup, the more it will affect her psychological re her ability to fight this horrible illness. I figured that if I'm able to get a sense from others who have gone thru and this and their experience, I can share it with my mom so she know what to expect and what's normal. Her surgery is schedule for 6/11 and I can tell that she's getting a little scared now.

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Hi Margaret

I was glad to read your post, I have been wondering how you were doing.

CONGRATULATIONS on the birth of your son!! How is the sleep deprivation? :wink:

Before my mum was finally staged at IV, I did some research on the net about pneumonectomies. I found the following article interesting: www.cancernetwork.com/journals/primary/p0011h.htm

I didn't do alot of research in this area, as surgery was ruled out as an option for us fairly early on, but it might serve as a starting point for you.

As John said, PETs are about 90% accurate, so it is possible for there to be microscopic traces of cancer in the system which are not yet detectable on the scan. All we can do is make the best possible decisions with the information we have at hand. I hope everything goes well for your mother, and that you are both able to 'tune out' the cancer every so often so that you can enjoy the new baby - they don't stay little for long!!!

All the best.

Karen

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Margaret,

I dont have many answers for you, but I can tell you this. My dad had his 2nd PET a few weeks ago, and it came back clean. His onc. sent him to a surgeon, who told him that a PET isnt "for sure" and wanted more tests. (A CT and biopsy). My dad nearly jumped out of his skin. He was so sure he was gonna have surgery and the PET was right. They gave him a CT and the biopsy, and everything did come back clean. It seems the PET was right all along. Im not saying that it is true in ALL cases, but in ours, the PET was right from the beginning. I know though, it is more likley for a PET to give a false negative then a false positive. Although it does happen. Get a second opinion, and do the necessary tests. I hope the best for you.

Jamie

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Guest Phyllis

The one thing I have learned is that oncologists all use the same textbook when it comes to cancer. They will all say that the cancer is more than likely spread to other parts of the body but we just can't see it yet. My throat surgeon was the one who finally clued me in on that. That is why oncologists are not wild about procedures that do not include chemo drugs to treat systemic disease. I do not listen to that stuff anymore. I know too many people who have had surgery on their lungs, ovaries, etc. with big 'ol tumors who are fine now with no further spread.

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Thank you everyone for the information. It's been so overwhelming trying to get a good handle on the disease and figuring out what the best options/treatments are. Reading everyone posts has really been helpful and reassuring.

It's been fustrating because every time that the doctor gives me good news (e.g. CT scan came back clean), he will also give me worse case scenario (e.g. the cancer probably spread, but we just can't detect it yet) and make it seem like it's likely to happen. It's been great to know that all the docs say that to all their patients. I was worried maybe I thought maybe he knows something and isn't telling me.

Again, I just want to say thank you again. You guys have been great.

Margaret

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