Question about the 5 year mark - 1245221

steff_1959
Posts:6

Hi everyone,

I don't post very often but am here reading a lot. I have just about reached my 2 year mark from diagnosis. I am still stable (had a scan last week) and am on maintenance Avastin, low dose, every 2 weeks. I don't really know if the Avastin is keeping me in remission or if I would be in remission anyway. I wonder about this a lot but figure since I am doing OK I'll just stick to this plan as long as I am stable. But...I am wondering about the 5 year thing.

If someone is on maintenance and reaches the 5 year mark, what is the thinking? In particular in a case like mine where there is no proof that the maintenance is working or not. I have heard of a breast cancer survivor that was on maintenance Avastin for over 5 years.

Is the 5 year mark still significant?

Forums

JimC
Posts: 2753

Hi Steff_1959,

Congratulations on your great results with maintenance Avastin. To discuss your question, we need to make the distinction between "stable" and "in remission". Although the term "remission" is not usually used with regard to lung cancer, that term generally describes a situation in which your scans do not detect any cancer cells. "Stable" refers to a situation in which the cancer previously detected is still there but is not growing.

Being cancer-free at the five-year mark is often cited as a good indication that a patient has been cured. Although recurrence can happen at this point, it is relatively rare. But with stability, the cancer remains and there is always the potential for it to grow.

It is difficult to determine whether maintenance therapy is what is preventing cancer cells from growing. The only way to find out is to take a treatment break. Of course, many patients are understandably reluctant to do this, and if a treatment is well-tolerated often patients will stay the course. If it is causing side effects, you might be more likely to take a break and see if you remain stable. This decision can be made at any point; the five-year mark is not so significant.

Best wishes for continued stability.

JimC
Forum Moderator

catdander
Posts:

A good example of Jim and I figuring out our way around each other in this virtual environment. I'll keep my post as is but he has really given a good answer.

Hi Steff, Really good to hear from you and how fantastic it is that you are stable. Take a look at my signature and you can imagine I've had the same thoughts.
I believe the 5 years out is out from treatment before one can consider themselves cured. I could be wrong on this and we'll get the answer soon.

Can you give us a little more info. Such as do you have evidence of disease, do you have tumors showing on imaging that the docs feel is cancer? and how many places of metastases?

While you answer this I'll look for blog/post and forum comments that may help. Then if we can't come to an understanding, I'll reach out to one of our docs. As you've noticed we've changed a bit how we do things. We want to be able to rely less on the few oncs that must scout the site to offer comment, instead JimC and I request input from a larger pool of docs. Don't hesitate to let us know what you need, while I don't look so new I am new at this and don't mind your input.

Janine

steff_1959
Posts: 6

Thanks so much for your reply.
I should just say stable. The chemo got rid of most of my cancer, only a small nodule remained and it;s hollowing out. I have some very tiny nodules (6 all under 5mm) in my right lung but they have remained unchanged. The doctor says he can not be sure if they are cancer. I asked him about them being BAC once and he said that is how they are acting.
But you are right...as long as there is something there, even if they are not active ....the 5 year mark can not be significant.
Thanks

steff_1959
Posts: 6

Hi Janine,

Just now seeing your reply. I think I got most of the information on the last post. I am a stage IV but nothing outside my lung area. Had a couple of lymph nodes and that is where they took the sample for my diagnosis, from my medistinal (please forgive my spelling) node. It was there, my hilar lymph node, a lesion on my left lung by my heart and a nodule on my right lung, and then those tiny ones. They took a sample from that right nodule but it was negative and the doctor was nervous that he didn't get a good sample so they went back in and took a sample fromy my lymph nodes (they were enlarged) Thank God they did.
Looking at your signature I see your husband is just coming up on his 3 year mark. And NED. That is awesome. I hope he stays that way. I am hoping my scans come back NED one day. But....stable is good :-)
Thanks !!

catdander
Posts:

stable is good. NED is good but evidence isn't all that easy to come by on a cellular level which is how the cancer travels. D is stable with no cancer bulk for sure. Like you it's just hard to know what is cancerous so we watch the way it behaves in the long run or short but it definitely depends. :roll:
What I know for sure is that we are lucky. I suspect we will stay on edge with worry. I know I look forward to D growing stronger the further out he gets from treatment. It became progressively more toxic and took longer to rebound.
How are you doing with treatment?

Here's is a link to an upcoming webinar, July 19th, on the subject we all hope for ourselves and for all I know my husband is still in reach of, cure.
http://cancergrace.org/lung/2012/07/01/webinar-july-19th-novel-radiatio…

"On July 19th, we’ll run our next webinar program, featuring GRACE Vice President Dr. Vivek Mehta, who is a radiation oncologist and Director of the Center for Advanced Targeted Radiotherapy at Swedish Cancer Institute in Seattle, WA. He’ll be covering several timely topics, ranging from stereotactic body radiation therapy (SBRT) for early stage non-small cell lung cancer, integration of new radiation technologies for locally advanced lung cancer, potentially curative focal radiation for “oligometastatic” lung cancer, and the challenging option of reirradiation within a previously radiated field. He’ll speak on the evidence we have and the promise these approaches hold, as well as the status of this work, from still being the subject of clinical trials to being integrated into off protocol cancer management. "

Dr West
Posts: 4735

I don't think there's anything magical about the 5 year mark, as opposed to 3 or 4 or 6 years. I think with any cancer therapy on which someone has been stable for a very long time, it's appropriate to ask whether the treatment is really doing anything or is just "alligator repellent" as I tend to say -- you're not being attacked by alligators, but the repellent you're using isn't the reason why -- you wouldn't be attacked anyway.

Whether it's someone on an indefinite therapy after potentially curative surgery or chemo/radiation, or someone who may only have residual inflammation or scarring but not cancer, it's fair to ask whether the treatment is adding nothing more than potential side effects, inconvenience of treatment, and costs, at least to someone. It's also possible that there is a viable so-called cancer, but it's so slow-growing that progression isn't perceptible over years. Some BACs can be like this, begging the appropriate question of whether treatment is doing anything other than adding a ritual as the cancer continues to grow barely perceptibly, as it would without the treatment. (This also applies to some breast cancers.)

Avastin (bevacizumab) can have some long-term side effect issues that aren't very well explored because most people aren't on it for years. But it causes high blood pressure, leakage of protein from the kidneys, a small increased risk of blood clots as well as bleeding complications, and overall isn't what I'd consider so benign that I'd want my patient to be on it indefinitely if I don't really know it's doing anything at all. In such situations, I at least discuss with the patient the concept of taking a break from treatment, and we often do just that in order to

1) give a well-deserved break from everything after a long duration of ongoing therapy
2) test whether what we're interpreting as cancer grows any faster off of treatment than on it

Good luck.

-Dr. West