Pre-Need CK / GK / WBR Information Please

[Ron]

Okay, this is another question I could probably research the board and find it has been answered previously. But here goes…. I finally convinced Cyndi that a brain CAT scan every six months is necessary. Then the ensuing discussion with the oncologist as to why we wanted it so frequently. My reason process is; IF – If – if – brain metastasis develops, that CyberKnife could be utilized and avoid WBR. The doc said that WBR would probably be used in addition to the CyberKnife or Gamma Knife or any other Stereo Radiological device.

I am sure that one of the Patty-s has refused the WBR on several occasions. Is it common to have WBR in addition to CK or GK? Is WBR something we will have to fight against if brain metastasis occurs? I pray we never have to make these decisions, but I think everyone should be informed beforehand. I know we cannot always anticipate treatment decisions before they must be made, but I try to stay far enough ahead of the curve so that decisions are not made without forethought.

Taxol has stopped shrinking the lung lesions (no progression either) so now the doc. Is going to try gemcitabine / Gemzar so any comments welcome….

ron

[Paul]

Ron,

As a technical matter, I think the effectiveness issue associated with stereotactic radiosurgery + whole brain radiation versus stereotactic radiosurgery alone is still an open issue. In considering this issue in advance, I don't think there is a "one size fits all" approach. It depends upon how many lesions are found, the size of the lesions, the location of the lesions, and the experience of the doctor(s), etc.

In fact, I found information that supports all three points of view as follows:

1. The www.irsa.org website provides the following:

Whole brain radiation therapy (WBRT) targets wide areas of the brain and was common with metastatic tumors in the past. We now know that new tumors may ‘seed’ to the brain as soon as the Whole brain radiation is completed. Thus the treatment only helps for one point in time.

WBRT is the most damaging of all types of radiation treatments and causes the most severe side effects in the long run to patients. In the past, patients who were candidates for whole brain radiation were selected because they were thought to have limited survival times of less than 1-2 years and other technology did not exist. Today many physicians question the use of WBRT in most cases as one-session radiosurgery treatment can be repeated for original tumors or used for additional tumors with little or no side effects from radiation to healthy tissues. Increasingly, major studies and research have shown that the benefits of radiosurgery can be as effective as WBRT without the side effects.

2. A 2002 study involving 333 patients with brain metastases found SRS + WBR superior to SRS alone (i.e., 82% effective rate versus 72% effective rate. The study results provided, in part, as follows:

Researchers from 34 medical institutions involved in the Radiation Therapy Oncology Group (RTOG) conducted a clinical trial to compare WBRT followed by SRS to WBRT alone in patients with brain metastases. The trial involved 333 patients with one to three sites of cancer in the brain and patients received either WBRT plus SRS or WBRT alone. One year following therapy, local control (control of brain metastases) was achieved in 82% of patients who received WBRT plus SRS, compared to 71% of patients who received WBRT alone. Patients with a solitary metastasis had an improvement in average survival from 4.9 months to 6.5 months and a survival benefit was achieved in patients who were under the age of 50 years with small cell lung cancer and any squamous cell cancer (including non-small cell lung cancer). In addition, SRS was associated with a significant improvement in a patient’s ability to perform daily functions. There was no increase in side effects in patients treated with SRS, compared to those treated with WBRT alone.

3. The National Cancer Institute (NCI), as well as other organizations, are putting your issue through the test of clinical trials. See cross-link below.

Ron, if you require cross-links in support of paragraphs #1 and #2 above, please let me know and I can post them separately.

[pattyz]

First of all, what you want is a brain MRI not CT scan.

I am the Patty that has refused WBR since the beginning. At that first dx in Sept '02 I actually was a 'perfect candidate' for Stereotactic Radiosurgery. I had not more that 4 tumors (had two), nothing over 3cm in size. Was nearly asymptomatic, had no viseral mets, had a good Karnofsky score.

but ........I was warned most severely that without the ADDITION of WBR I would be most likely to have recurrance. I knew that and refused it anyway.

WBR does not have a great response rate nor length of response rate. Those who recur after WBR are eligible for one of the focalized treatments, if not too many tumors or too large.

And I guess you know, that I have had FIVE seperate treatments for a total of 16 tumors. And NO WBR.

But always remember, even if they make you fight for it, it is your decision to refuse...or I should say your wife's decision. And they will find other acceptable (to you) ways to treat.

If you do a search, you will find lots more info, too.

pattyz

[Lisa]

While I appreciate Paul's time in researching links for information, I would like to point out that these links quote statistics that may or may not apply in all cases. I would hate someone getting WBR to be told--and to believe--that it won't do them much good in the long run anyway. There are many cases where this simply isn't the case. Ron, good for you for pushing for regular brain tests. I am doing the same. And I hope that we will never have to deal with the mets. But if we do, the fight simply continues.

Love and healing light,

Lisa

[Paul]

Lisa,

While I appreciate your comments, I think you need to reread my post. I clearly informed Ron that there is no "one size fits all." I also indicated that the choice of SRS + WBR or SRS alone could depend on the number of lesions, the size of the lesions and the location of such lesions. In support of that fact, I posted sources that support all three positions (i.e., SRS alone, SRS + WBR, and we don't know which is best because it's in clinical testing). I think that is as objective as it gets. It also indicates that the issue is still an open question medically.

Do you have any information in support of your position? My concern is that we attempt to be as objective as we can based on readily available resources. I think most would say that I back up my posts with resources. Ron knows that I am about as proactive as they come. I have urged many on the board to obtain MRIs. However, I believe it is irresponsible for us to take a "single" position on this issue when the medical authorities indicate otherwise. Each individual case is different and may warrant a different approach.

If you would like additional medical authorities, I will be happy to provide them to you via personal email. If you have any authorities, I would love to obtain them via personal email.

I hope this clarifies your understanding of my post.

[Lisa]

My intention is certainly not to get into any type of debate. Paul asked if I had "resources to back up my position." Since I have no position, the answer is no. I suppose you could call the thoughts below "positions." They are 1. that all things all possible, 2. we are not statistics and 3. that any treatment, WBR or other, will work differently with different results for different people. My personal belief is to search for information re: possible treatments, look at the statistics, make a decision about your personal treatment path, then throw all the stats in the garbage, realistically and figuratively. Hope is a trait that is crtically important to our battle, and it can get too easily clouded with statistics and naysayers.

Love and healing light to all,

Lisa