Chemo for pT1a? Also two independent (primary) cancers

Posted by janar @janar, Aug 6 2:43pm

I am 38 year old male. 2 years ago my right testicle was removed and received diagnosis for "adenocarcinoma of rete testis". Since then I was on surveillance with CT scan every 3 months. For 21 months they found nothing.

On my last CT they found a nodule that had grown slowly over the 21 months from 2mm to 6mm. Two weeks ago I received VATS surgery at private hospital because my primary oncologists told me that the nodule is "too small" and "we dont even know what it is".

I received pathologists report yesterday which says the nodule isn't rete testis adenocarcinoma and that the nodule was a primary. So until proven othetwise, I have two completely independent cancers. The pathologist stage is pT1a, but they didnt resect any lymph nodes so node staging is Nx. There was minor lymphatic carcinosis at the site but otherwise it was resected with healthy margins.

I have already studied a bit on T1 stage adjuvant treatments and most say that it doesnt actually give any benefit.

My question is that is this true? I imagine that if someone of advanced age would get diagnosis for T1, there might not be benefit from adjuvant treatment like chemo, but what about younger patient? I would very much like this thing to be nuked out of my body, side effects be damned.

Also has anyone any idea how two independent cancers affect treatment options?

Interested in more discussions like this? Go to the Lung Cancer Support Group.

Because this is a new primary and diagnosis there are options that will not affect your other cancer. Surgery is the gold standard and it reads as though yours has been fully excised. Is that correct?

They should have sent the tissue for further testing to establish which biomarker caused the cancer. Any adjuvant treatment would depend on those results. There are studies that demonstrate adjuvant treatment in lung cancer with a targeted therapy does extend progression free (PFS) and overall survival (OS).

Please let us know what your oncologist says.

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Yes. As far as I understand, it was completely resected with significant healthy margins.

The staining results were following:
Positive:
+ TTF-1, AE1/3, CK7, Ber-Ep4 and EMA

Negative:
- Inhibin, CK5/6, PAX8, NKX3.1, OCT3/4, vimentin, ALK and ROS1

PD-L1 TPS 0% CPS 0

I will have a talk with my oncologists next week.

My CEA started rising last November from undetectable to 4,2 ug/l in late February and 5,2 ug/l in late June. I know it is only slightly elevated but it is what got my alarm bells ringing. Although the CEA correlates heavily with my hepatitis A&B vaccinations; I had first vaccine shot bit over one month and second vaccine shot 10 days before November measurement and 20 days before May measurements.

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@janar, we're not thoracic oncologists here, so we can't speak to the medical details. That's for the people with years of study and practice to determine. "Side effects be damned" is a lot easier to say when you haven't lived with them and that many of us CAN speak to. Both chemo and radiation can have side effects that last for multiple years. In my case, 5 years after I'd had chest radiation, my Oncologist was speculating that symptoms I had at the time could have been at least partially traced to chest radiation.

Years after chemo, I went to a physical therapist who examined my body and started asking questions about my diet. Once she realized I primarily eat a Mediterranean diet, she said, "The only other people I see this type of soft tissue stiffening in are people who've had chemo."

Based on my experience, I recommend following the directions of your Oncologist and taking things at their recommended pace. I'll also repeat advice you'll hear a lot in this forum: try to avoid consulting Dr. Google all the time. We understand your urge to be cancer-free as soon as possible, but your doctor will know the best way to achieve that goal without doing collateral damage to your body, which, ironically, may make you more susceptible to cancer in the future.

If you're eager for authoritative knowledge, as a lung cancer patient, you're entitled to join the International Association for the Study of Lung Cancer, iaslc.org. That's the world's leading group of thoracic oncologists, radiologists, nurses, and others dedicated to the study of all forms of lung cancer. Their World Congress is next month in San Diego, and they're celebrating their 50th anniversary.

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As Matthew indicated we are not medical doctors. I can share with you some of the things I have learned as a 13+ year advocate and what I learned about my own cancer diagnoses (3 of them).

The first set of results are indicators that it is probably an adenocarcinoma of lung origin. The proteins a cell creates are organ specific. Some of those rule out squamous cell. (The same genes test results showed up on my latest biopsy result).

It's possible that the group of negative results would have been tests to verify that this is not from your other primary.

Please let us know what you learn from your oncologist.

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@denzie

As Matthew indicated we are not medical doctors. I can share with you some of the things I have learned as a 13+ year advocate and what I learned about my own cancer diagnoses (3 of them).

The first set of results are indicators that it is probably an adenocarcinoma of lung origin. The proteins a cell creates are organ specific. Some of those rule out squamous cell. (The same genes test results showed up on my latest biopsy result).

It's possible that the group of negative results would have been tests to verify that this is not from your other primary.

Please let us know what you learn from your oncologist.

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I would add that, from my experience with lung cancer and my son’s lymphoma, a 2 nd opinion never does any harm and may be hugely useful.
After a suspicious nodule was seen on a CT scan in my left lung, the first oncologist I saw recommended waiting 3 months and then doing a 2nd scan to see if it had grown. It had barely grown, so she recommended doing another scan in 4 months. I consulted another lung cancer expert (a surgeon) at a different hospital. He said, “I’m 85% sure it’s cancer” and did a lobectomy shortly afterwards. The biopsy proved him right. (I couldn’t have a biopsy prior to surgery because the nodule was inaccessible). Waiting might not have changed anything, but I was happy to move quickly when it was only Stage 1A with no lymph gland involvement.

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@jill7517

I would add that, from my experience with lung cancer and my son’s lymphoma, a 2 nd opinion never does any harm and may be hugely useful.
After a suspicious nodule was seen on a CT scan in my left lung, the first oncologist I saw recommended waiting 3 months and then doing a 2nd scan to see if it had grown. It had barely grown, so she recommended doing another scan in 4 months. I consulted another lung cancer expert (a surgeon) at a different hospital. He said, “I’m 85% sure it’s cancer” and did a lobectomy shortly afterwards. The biopsy proved him right. (I couldn’t have a biopsy prior to surgery because the nodule was inaccessible). Waiting might not have changed anything, but I was happy to move quickly when it was only Stage 1A with no lymph gland involvement.

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A second opinion is excellent advice.

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My oncologist says that he is very, very confident that the nodule has not spread anywhere. He is also certain that it is primary and told that it has nothing to do with the tumor in my testicle. According to him, it's very ordinary lung cancer. He says that when you think rationally about my case, there is no way that the lung cancer would've spread to my testicle when it was sub 2mm size 2 years ago.

As for my CEA, which I measured on Monday: It had gone up by 1,2 ug/l since my last measurement (it's 9,8 ug/l now). Oncologist told me to stop doing these measurements unsupervised (i.e. without doctors referral) as they are very nonspecific. He said that the value of CEA is to monitor effect of treatment where the CEA is like 400 or 500 and it goes to 50. The CEA can go up in all kinds of inflammations and other things. So now I've started thinking that maybe I have diabetes or pre-diabetes or some kind liver damage. At the time when my CEA started rising, I had taken hepatitis vaccination just week before the blood test and reinforcement shot just before the measurement in May. I also had been on pain medication because of my wisdom tooth surgery and they had to pump extra amounts of anesthesia into my jaw. I also ate painkillers for 2 months for that. This was in April.

So I also did my liver function test and all were normal except for the GGT, which was about 2x the reference. He said that GGT is used to monitor alcoholics and CEA can become elevated in smokers. Well I don't smoke or drink alcohol so he jokingly said that maybe I should start smoking and drinking. But in all seriousness he gave me a lot of confidence to stop doing Dr. Google and hyperfocusing on single blood test value as all other values are normal.

Of course still in the back of my mind the CEA is there. There's still questions about it. It probably really isn't that high (9.8) because I've measured it at a private lab, which gives me 3ug/l or 60% higher values than the national lab. The last measurement at national lab was done 2 months ago and it was 5.2 ug/l back then when week before in the private lab it was 8.7 ug/l. It's just that I read a lot of papers about how the CEA should drop/normalize within a month of surgery. Surgery was on 19th of July and the measurement was on 12th of August so.. Either my CEA rose until the surgery and this measurement is less than what it was then, or the CEA value rose because of invasive procedure and healing process or.. Well.. The cancer is somewhere else. While the fact that nodule is gone and it was independent from my testicular tumor, there is the worry that CEA is caused by the testicular tumor, which would be extremely bad news as it is very rare and extremely aggressive with no known treatment outside of surgery.

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@janar

My oncologist says that he is very, very confident that the nodule has not spread anywhere. He is also certain that it is primary and told that it has nothing to do with the tumor in my testicle. According to him, it's very ordinary lung cancer. He says that when you think rationally about my case, there is no way that the lung cancer would've spread to my testicle when it was sub 2mm size 2 years ago.

As for my CEA, which I measured on Monday: It had gone up by 1,2 ug/l since my last measurement (it's 9,8 ug/l now). Oncologist told me to stop doing these measurements unsupervised (i.e. without doctors referral) as they are very nonspecific. He said that the value of CEA is to monitor effect of treatment where the CEA is like 400 or 500 and it goes to 50. The CEA can go up in all kinds of inflammations and other things. So now I've started thinking that maybe I have diabetes or pre-diabetes or some kind liver damage. At the time when my CEA started rising, I had taken hepatitis vaccination just week before the blood test and reinforcement shot just before the measurement in May. I also had been on pain medication because of my wisdom tooth surgery and they had to pump extra amounts of anesthesia into my jaw. I also ate painkillers for 2 months for that. This was in April.

So I also did my liver function test and all were normal except for the GGT, which was about 2x the reference. He said that GGT is used to monitor alcoholics and CEA can become elevated in smokers. Well I don't smoke or drink alcohol so he jokingly said that maybe I should start smoking and drinking. But in all seriousness he gave me a lot of confidence to stop doing Dr. Google and hyperfocusing on single blood test value as all other values are normal.

Of course still in the back of my mind the CEA is there. There's still questions about it. It probably really isn't that high (9.8) because I've measured it at a private lab, which gives me 3ug/l or 60% higher values than the national lab. The last measurement at national lab was done 2 months ago and it was 5.2 ug/l back then when week before in the private lab it was 8.7 ug/l. It's just that I read a lot of papers about how the CEA should drop/normalize within a month of surgery. Surgery was on 19th of July and the measurement was on 12th of August so.. Either my CEA rose until the surgery and this measurement is less than what it was then, or the CEA value rose because of invasive procedure and healing process or.. Well.. The cancer is somewhere else. While the fact that nodule is gone and it was independent from my testicular tumor, there is the worry that CEA is caused by the testicular tumor, which would be extremely bad news as it is very rare and extremely aggressive with no known treatment outside of surgery.

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I wouldn’t panic! Cancer markers do seem to be affected by inflammation and are not always indicative of cancer spreading. 2 weeks after my lobectomy, my CEA and my platelets were way out of the normal range, but a month later, everything was fine.

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I am going to have new blood test tomorrow. I am terrified. I am terrified that tomorrow is starting point for another nightmare. By tomorrow it has been over 4 weeks since my surgery.

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I know so well that terror. Will be thinking of you and hoping your result is the same as mine.

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