Confused & Panicky - Limited/Extensive and radiation

[deruo]

Hi all,

Mom got the CT results back and both the chemo oncologist and the radiation oncologist were very pleased with the progress we've had with 3 cycles of chemo. (Currently doing #4). 1 tumor has shrunk from about 7 cm to 3 cm.

Unfortunately, I wasn't able to be there for the consult, but was told by my brother that he was told that mom's staging was extensive. Up to this point we hadn't been told. As far as we knew, the cancer is in 1 lung, the mediastinum (sp?) hilar region and 1 adrenal gland may be affected, (they weren't sure about the adrenal) I thought extensive meant that the cancer was in other parts of the body?

She hasn't had radiation yet because according to the docs, the field would be too large as she's rather petite, and would have been too much for her to handle.

Today he suggested 1 of 2 approaches for radiation (up until now he said he didn't think he'd be doing radiation at all - which muddles things further for me)

1. Gentle Approach - monitor for new growth after chemo finishes and if/when it occurs - blast it with radiation.

2. Aggressive Approach - chest radiation as well as brain radiation. (PCI or WBR I assume) after chemo finishes. I don't like that he told her this offered a small %'age chance of a "cure", but mom seems to be leaning towards this option because "a small chance is better than no chance". On the other hand, the Rad. Onc. himself apparently said that if it were him, he wasn't sure he'd put himself thru the process for such a small chance. (?!)

I feel like I'm back on the roller coaster we were all on back in September when she was diagnosed. Things seemed to be going well, but I'm all panicked now.

What do you guys think? Does this sound like standard treatment for extensive SC? And which option is preferable? Is there a "standard" treatment for SC?

Oncodoc, please feel free to comment!

[Addie]

Unfortunately, I wasn't able to be there for the consult, but was told by my brother that he was told that mom's staging was extensive. Up to this point we hadn't been told. As far as we knew, the cancer is in 1 lung, the mediastinum (sp?) hilar region and 1 adrenal gland may be affected, (they weren't sure about the adrenal) I thought extensive meant that the cancer was in other parts of the body?

Hi deruo. I'm not oncodoc and I hope he sees this so you get some real professional answers...but I'll try answer what I can. For sclc to be extensive...any mets outside the lungs or chest would qualify...so if your mom has an adrenal met, she would be extensive stage. If they really aren't sure whether she has a met to the adrenal...I would think her docs should MAKE sure. Treatment can be different, depending on whether a person is limited stage or extensive.

Limited stage is cancer in one lung only, or in the lymph nodes in the chest area too...but not beyond that.

She hasn't had radiation yet because according to the docs, the field would be too large as she's rather petite, and would have been too much for her to handle.

Today he suggested 1 of 2 approaches for radiation (up until now he said he didn't think he'd be doing radiation at all - which muddles things further for me)

1. Gentle Approach - monitor for new growth after chemo finishes and if/when it occurs - blast it with radiation.

2. Aggressive Approach - chest radiation as well as brain radiation. (PCI or WBR I assume) after chemo finishes. I don't like that he told her this offered a small %'age chance of a "cure", but mom seems to be leaning towards this option because "a small chance is better than no chance". On the other hand, the Rad. Onc. himself apparently said that if it were him, he wasn't sure he'd put himself thru the process for such a small chance. (?!)

Perhaps the reason the docs are now considering radiation, is that she's had a good response to chemo and the tumors have shrunk....thereby reducing the field that would need to be radiated! You might ask the docs if this is the case...but it makes logical sense to me.

Of course, she has more rounds of chemo to go...and it's likely she'll have further good response....so in making the decision between option #1 or #2 above, if she can tolerate the chest radiation concurrent with the chemo...this tends to produce the best results.

As for the PCI...I just completed mine. Generally, PCI is done only when one is limited stage...but there are exceptions, I suppose. Again, this is something you need to clarify with the doctors. But chemo doesn't really cross the blood/brain barrier....so PCI is done to eliminate any micro cells that might be lurking in the brain.

As far as whether or not there is standard treatment...the easy answer is yes, there is. There are chemo drugs that are pretty standard for treating sclc and usually in combination with radiation. BUT...just like every patient will respond differently...there will be some differences too, in the treatment plan.

Some people only go thru 4 or 5 cycles of chemo...but most do 6. The number of days of radiation recommended will vary. I had 31 days of lung/chest radiation...but some people do 35 or more....some only 28. Some do chemo and radiation together or concurrently....others do radiation AFTER chemo. So...there are differences within the sort of basic approach to treating sclc.

I hope I've answered some of your questions. I know it's all pretty overwhelming and if you can't be right there for all mom's appointments, it's probably even more confusing. Write your questions down, when you have them....so you don't forget to ask them when you have a chance...or have your brother ask them for you (and tell HIM to write the answers down, too!)

Hope some of this helps a bit. Now, don't forget to breathe, too...ok?

[SDianneB]

What Addie said ...!!!

I'm not an expert either, but the one thing I would do for sure is find out about the adrenal gland involvement. I went round and round with that issue myself, and I see a Pulmonologist who is great, and he was able to sort through that for me. As it turned out, I had adrenal gland enlargement, but it was from a benign infection and not cancer. They can do CT guided biopsies, and other tests to rule it out, I'd think. I'd at least find out as much as I could about it.

Hang in there -- this can all be SO confusing.

Take care.

Di

[Addie]

I forgot to mention that I too, had "something" going on with an adrenal gland, one kidney AND an ovary. All were thought to be cystic lesions...or so I was told originally (back in May) but the only one they were worried about was the ovarian lesion. We've tracked it since May with periodic ultrasounds and it's doing nothing. No blood supply. Thought to be scar tissue, perhaps or a cyst...but not malignant.

The CT I had done at the end of treatment referred to whatever it was on my adrenal as an enlargement of the gland, as I recall...but not a lesion.

In any event, nobody ever said I was anything but limited stage and nobody ever seemed particularly concerned with whatever is in my kidney or on my adrenal. The ovarian lesion sent them into panic mode that it was another primary cancer....but it is not.

Anyway...my point with all of this, was if it hadn't been for finding my cancer, I'd NEVER HAVE KNOWN about any of those other three lesions!! I think lots of people walk around with cysts, nodules, whatever...on various organs and don't even know it. They aren't malignancies.....but once a malignancy IS found....well, they start looking at everything...which all in all, is a good thing!

My motto these days? Don't panic until you have to!! But like Di said, ask the docs again about that adrenal and what it actually is. Tell him you understand treatment varies for limited as opposed to extensive stage...and ask him exactly WHAT stage your mom is!

[DebsSky]

Hi Dale:

I have no info. for you, just that I am interested in this as well because, as you know, our mothers seem to have the same things going on. They have never actually staged her either.

Good luck to you and your Mom Dale, hope you get the info. you need and keep us posted.

Take care, God Bless,

Deb

[kimblanchard]

Well, I'm going to make some generalized comments since its hard to say specifically about your mom's case without knowing more details (how certain the adrenal involvement is, etc.)

There are patients who have really great responses to treatment and in whom the bulk of their disease is confined to the chest where I think radiation does make sense. In someone with an isolated adrenal met, I agree that there is a small chance that the cancer could stay gone. Her risk of recurrence is definitely going to be highest in the chest where it sounds like she had fairly bulky disease so radiation to control that is reasonable. There are not right and wrong answers here but I think what her doctor is proposing makes sense. On the other hand, the chance of cure is very small and some people would not be willing to go through the extra treatment for small benefit. More importantly, some people are too weak to go through that kind of treatment. I'm not sure where your mom falls in this but it sounds like she is reasonably strong.

If she does get a remission with the above treatment, then I also think PCI makes sense. The recurrence rate in the brain is well over 50% and so I think it is worth taking steps to prevent. Again, it is a question of how "aggressive" she wants to be. Radiation to the chest and brain is aggressive but I think appropriately so. And I do have a lady in my practice with small cell with an adrenal met who had chemo and radiation who is in remission 4 years out and counting.

[deruo]

Thanks very much everyone for your responses.

This decision has been put on the back burner for the last few days as mom was admitted thru emerg to the hospital with SOB from fluid buildup in the lungs. As a result she missed one session of chemo (which didn't seem to concern the oncologist as much as it does me)

Emergency doc seemed to think it was congestive heart failure, but the oncs seem to think it was from chemo. So they've been doing tests to make sure theres nothing wrong with her heart.

One oncologist said tonight that for some reason, they've been seeing more of this recently in patients taking chemo "that usually doesn't cause side effects like this".

The most frustrating thing about all of this is that you have dozens of questions but can't get the doctor to stay in one place long enough to answer half of them, or if it doesn't come out of the patients mouth, they don't seem to take it seriously.

d.