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Have you ever seen something like this?


carol

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Hi, My dad was diagnosed with Adenocarcinoma in March. They did a helical CT and found a primary tumor in his right mid lobe, also some tiny mass in the lower left lung. According to the radiologist, there were about 30 of them with a maximum diameter of 2mm and he suspected that the small mass were mets from the primary tumor. PET only picked up the primary tumor with a max SUV of 4. Due to the size, PET didn’t pick up the small mass in the left lung. They did a biopsy on the primary tumor but could not reach the small mass. Therefore my dad was staged IV.

The strategy was to put my dad on chemo and re-evaluate after two treatments. If both the primary tumor and small mass responds, then the small mass is mets. If only the primary tumor responds, then the small mass is due to something else.

Now after two treatments of Gemza/Carboplatin, CT shows the primary has shrunk quite a bit, however, the small mass in the left lung is still there. The radiologist said he could tell that they became smaller and he was pretty sure they were mets from the primary tumor. PET shows the SUV on the primary tumor now reduced to only 1.1.

Neither CT nor PET picked up any enlarged lymph nodes. I am still not convinced. If there’re no lymph nodes involvement, how did the cancer cells travel from the primary tumor to the left lung mass? If they travel through blood, how come the other parts of the right lung did not get them? Can human eyes detect the differences in size for something less than 2mm? Also, if the small mass were mets, they should have disappeared because the primary has shrunk from 5cm to less than 3cm. Have any of you seen situation like this? Is there a way to confirm the malignancy of the small mass in the left lung?

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Hi Carol,

I've had alot of questions like yours too. My dad orignally had 2 masses in his left lung and two in his liver. The biopsy was only done on the left lung tumors and SCLC was determined. The liver tumors (less than 2.3cm each) were determined to be mets. Now I was told that the cancer traveled thru the blood stream and that is how the liver metastesized, but there was not lymph involvement or any other involvement either between the lung to the liver. After two rounds of chemo the two tumors in his left lung shrank tremendously but the liver mets stayed the same. After the fourth round, the tumors in his left lung were gone and the liver mets shrank by 1/2. They have stayed the same ever since and it has been 8 months almost. The org. tumors in his left lung never returned, but he did get a recurrence in the left lung (2cm tumor in a different spot on the same lung) It has since shrunk too. I don't have an explanation for it, but hopefully someone here will.

Continued prayers for your dad (And YOU)

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Carol,

Carol, I think doctors use xrays to justify what they (the docs) had planned to do anyway. They are all aware of false positives and false negatives and more, but when they tell a patient their diagnosis, they act like they really know what they are doing! SORRY. Some of them don't know what they are doing. Are you aware that reading films is very SUBJECTIVE? Two doctors can examine the same film and come to two different conclusions. I have also found that some doctors don't even look at the film at all. They merely rely on the radiologist's report! And each CT or MRI that you get? Chances are different radiologists are reading them. Each report can be alarmingly different.

Bottom line? You have to stay on your toes. Ask questions. Ask different doctors the same questions. If a doctor cannot answer a question convincingly, change doctors.

That's my story and I'm stickin to it. JudyB

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Man, this can sure get confusing---at least to me. But, here goes anyway.

My diagnosis was very much like yours. NSCLC upper right lobe, very close to bronchial tubes so could not do surgery. At the same time, a small spot appeared on my right lower lobe and six different doctors said it didn't look or act like cancer (?) So, I dismissed that from my mind and concentrated all my fears on the upper right lobe. I didn't know the right questions to ask at the time.

Several chemos and radiation later showed the tumor reduced enough for surgery. Went into the cancer clinic, they opened me up to remove the right lung, biopsied the lower right lobe, said it was cancer and sewed me up and sent me home. They said the cancer was in my blood stream and I had six months to live. That was 2 years ago. Several PET and CT scans later show me to be in remission. Great! But I have never understood how the cancer got from my upper lobe to lower lobe if nodes wern't involved.

My oncologist no longer reads the scans or xrays. He depends on the radiologist to give him the news.

Judy B - - - I like that part where you say "That's my story and I'm sticking to it." Me, Too.

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Carol,

I'm not sure how the cancer can travel from one place to another, or how it chooses to go to certain spots and avoid others. My husband has mets in his lymph nodes and his liver, but his blood work showed no blood involvement, how does that happen? Originally his doctors were unsure whether the spots on his liver were mets or scar tissue. They told us they would give him chemo and if the liver spots shrunk then they were mets, if not they would ignore them as tissue. When we made our appointment for the Mayo Clinic, the doctor there said "hell no, that is not a way to do a diagnosis". They said some mets respond to chemo at different rates, just because one tumor shrinks and another doesn't doesn't mean they aren't both the cancer. Especially liver mets, which I guess shrink at a slower rate. Plus depending on whether they were mets or not could change the recommended treatment plan of action. They did an ultrasound on his abdomen and a PET scan and determined that they were mets. You should never assume or guess at cancer, you need to know.

I'm saying my prayers for you and your family.

Carleen

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Hi, thank you all for your support! Now my dad's radiologist is pretty sure those mass in the left lung are mets. But the oncologist isn't quite convinced. He suggested a VATS (Video Assisted Thoracic Surgery) to biopsy the small mass, if it is cancerours, then sew up the cuts and do nothing. If it's not, perform a lobectomy to remove the right middle lobe. My dad's still very hesitant because even a VATS requires some time to recover and may cause infection or complication which would delay further treatment if the mass was found cancerous. He's 67.

I asked my sister to send me all the scans and info and I will take to MD Anderson for a second opinion. But I really don't expect to hear something dramatically different from what I have been hearing. After all, scans can only show so much and reading scans is very subjective.

Carleen and Sue, when doctors told you that the cancer was in the blood stream, how did they tell? What kind of test did they do? Based on my reading, up till now, there's no way to detect cancer by blood test. I know there're some research on this subject, but not to the extent where the scientists are so sure.

And Sue, I have one more question for you. After they 'sewed' you up, how long did you have to wait to start chemo? Do you mind telling me what kind of chemo drug and radiation therapy you used and for how long?

Thanks in advance! Let's all pray for miracles.

Carleen, I love your picture. You two make a perfect couple!

Love,

Carol

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Carol

Sorry I didn't get back sooner but my computer is in repair shop and I had to go down to the library to use one of their computers. Withdrawal from computers is tough going!

I honestly don't think they did a special test on me to find out if it was in the blood stream. I remember the surgeon coming to see me with the "bad" news that they could not remove the lung and that is when he said it was in the blood stream.

I had been on chemo and radiation prior to surgery in order to shrink the tumor away from the bronchial tubes. It was Taxotere and Carboplatin. One week after surgery my oncologist started me back on chemo as a Preventive Maintenance.

When I was going through chemo, I met ladies going through breast cancer who had blood work drawn to measure their tumor markers. I asked my oncologist about that for me and he said my didn't measure accurately. The markers are supposed to give an indication on how bad or good your cancer is doing.

Hope some of this helps.

forgot to sign in again

Sue M

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Guest DaveG

Here, again, is one of those mysteries of medicine, and when they solve it, we have the cure.

When I was in the Army, I was both a Med Lab Tech and Nuclear Med Tech. The pathologists, radiologists, and nuclear med docs, all said the same thing, medicine is not an exact science. There are far too many unknowns and we must work within the technology available to us at this time. As technology improves, so does knowledge. But, also, as technology improves, there seems to be more mysteries revealed in almost an exact proportion.

I know this much, if we had the technologies of today, during the Vietnam War, there would probably be less than 10,000 names on the Vietnam Memorial. We have come a long way in 30 years, but still have far to go.

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Hi Carol,

Also sorry it took me so long to respond. Been kind glum lately and haven't spent much time on the board. I don't know why, because coming here always makes me feel better. But, I'm here now.

I am not sure of which test they did to look at my husband's blood. I do know that there are hormonal blood markers that designate cancer activity. They are HCG markers and AFP markers. I don't know what they mean exactly, but I do know that they are hormones that are usually present at a certain level in women, but not in men. Their presence in men usually designate cancer activity. Elevated levels of these in women, other than during pregnancy or nursing, also supposedly indicates cancer activity.

Thank you for the sweet compliment. My husband and I have a standing joke that in each relationship there are roles that each person plays. For example, when you go out and meet a couple of people, usually one is good looking, while the other has the good personality. There is always one person who is the funny one... and he tells me that I'm not funny. So, I always argue that I must be the funny one, because he's obviously the pretty one in the relationship. He makes anyone look good standing next to him.

You're in my prayer,

Carleen

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I was reading a book The Chemotherapy & Radiation Therapy Survival Guide last night by Judith McKay and Nancee Hirano, and I came across something about tumor marker. Here's what it says in the book:

'Although there is no current test that can accurately predict cancer's occurrence or cure, there are a number of substances in your blood whose presence at certain level is associated with particular kinds of cancers. These substances are called tumor markers...

If you have breast cancer, your doctor may be testing your blood for the tumor marker CA15-3 or CA27.29. THe tumor marker CA-125 may be peridodically checked if you have ovarian cancer...

A rise in the prostatic-specific antigen(PSA) can indicate prostate infection as well as prostate cancer. A rise in the blood level of carcinoembryonic antigen (CEA) is associated with cancer of the colon, pancreas, breast, or intestines, ..... A rise in the enzyme prostatic acid phosphatase(PAP) is associated with cancer of the prostate, bone, or multiple myeloma...'

I have not read about any tumor markers for lung cancer though. I believe the mysteries will be revealed one day.

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Carol, I have the same book! With my father's cancer, sclc, many of the blood tests and chemotherapy medicenes are similar to that of ovarian cancer. His doctor can tell with a blood test if his cancer is growing as well as test the liver function. In fact, his chemo drug he is using now, Topetecan, was originaly an ovarian cancer drug I was told and now it is used for sclc as well with a 20% success rate. I don't know about the testing for NSCLC, but maybe the others will have more to add.

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Katie,

Wanted to let you know that I went to a support group meeting in my area a few weeks back and there was a SCLC survivor there who was in on the clinical trial for Topetecan and has been cancer free for 7 years! A gentleman in the group is now on that same drug and was teasing her saying "I thank you and my ovaries thank you for your participation in the trial!!" I wish your father the best of luck on it!

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