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In need of some feed back

Bob2286
Posts: 2
Joined: Oct 2004

Hello,
I'm writing this in regards to my 43 year old wife, who has stage 3a non-small cell lung cancer.She had a 3cm mass on her lower right lobe and one of her lymp-nodes by her esophagus was cancerous. She's had radiation and chemo and then surgery was performed to remove the lower right lobe of her lung. At that time they also removed the bad lymp-node and some more lymp glands in the area where the cancer was. The biopsy came back that two other lymp nodes where cancerous. So now were just finshing post op chemo.
Now here's the question that were not sure what to do. The doctors offered us a trial to do brain radiation to hopfully prevent the cancer from possibly spreading to the brain. Their not saying that it is there.It's some scary stuff with all the side effects they throw at you that could happen. We just don't know whether to have the radation done or not.
Has anyone here had this kind of radiation done before??
Any feed back on this would be greatly appreciated.

Thank you,
Bob in Michigan

michaelcie
Posts: 133
Joined: Nov 2001

hi Bob, I have small cell lung cancer, am inoperable, in remission two years last february. They push that Prophylactic Brain Irradiation for small cell lung cancer because it has a 65% chance of metastisizing to the brain. I have not heard of non-small cell doing that. I opted out of the rads to brain because when I asked my oncologist, she rolled her eyes and would say nothing. i took it as no and did not get it. Please do some research because i really don't think it is a decision you can make without some of your own research. It is your life and you have to live comfortably with your decision. I was also told that it would only increase my chance by about 1-5% of not spreading to my brain. I hope this has helped you some. In my Prayers, Mike

Bob2286
Posts: 2
Joined: Oct 2004

Hi Mike and thanks for your input. My wife has the NSC cancer and the doctors told us that there was a 25% chance of it metastisizing to the brain. Our doctors are kind of trying to sway us towards it, but they are also the ones doing the study-go figure. I went back to page 8 of this forum and found a thread on whole brain radiation, which I found very interesting. I think it was enough to sway us into not having it done.Our doctors made it sound like if we don't have it done there isn't to much they could do if it came back in the brain. But from what I have read in this forum there are treaments they can do if it comes back there. I personally think the risk of some of the side effects of WBR are to great. I think we have decided to fight the cancer in the brain if it shows up there later.
Thanks again Mike for your input my friend and God bless us all!!!

Bob in Michigan

and anyone feel free to add to this thread thanks

jalexander
Posts: 31
Joined: Nov 2003

Hi Bob,
I have non small cell lung cancer and this treatment was never offered to me. I am a 43 year old stage IIIB survivor. I had two tumors in my right lung which was removed in January 2002. I had short chemo and radiation before surgery and chemo after surgery. There were no cancerous lymph nodes involved. It is now 18 months post-op and I am still cancer free. I offer my story as a success without the brain radiation, but I don't mean to sway your thinking for or against the treatment. It has to be you and your wife's decision. Perhaps my story can offer a little inspiration that life with lung cancer is still wonderful and fulfilling. I now go camping and hiking regularily with my 13 year old son and his Boy Scout Troop. Good luck with your decision.

John from Indiana

Fatboy
Posts: 25
Joined: Mar 2004

Bob,

I have non cell lung cancer, stage 3A. I had my left upper lung removed Sept.2004. Before surgery, a CT scan was done for pre-op and shown signs of possible lesion in brain. Had MRI done and confirmed 1 lesion to brain. I did the stereo tactic radio surgery. Five weeks later, did another MRI for follow up and 3 more lesions showed up. We did the stereo tactic radio surgery. I talked to three different radialogist and all have recommend that I do whole brain radiation along with chemo. I have finished my 1st week. This is to last 4 weeks. So, as you can see non small cell lung cancer can spread to the brain.

My prayers are with you and your family.

Don't let my name confuse you, I am 44 female.

Fatboy (Gini)

Plymouthean's picture
Plymouthean
Posts: 264
Joined: Jan 2004

Hi,
I'm Ernie, a three year nsclc survivor.
I'm sorry that I'm late responding to your request for feedback but ....... my experience is that while I was undergoing chemo and radiation to the lung, the doctors ordered brain scans to watch for mets to the brain, of which there were none. I was not offered radiation to the brain as a precautionary measure. My opinion, based on a friend who has had radiation to the brain, is that there is a limit to the amount of radiation that the body can take. Why radiate something that is not there, and then not be able to receive radiation if/when needed because you have had all the brain will take. Obviously, I'm not an MD, but that's how I understand the situation regarding radiation. Ask more questions of the doctors, and get answers with which you are comfortable. Good luck, and God Bless.

annie8358
Posts: 2
Joined: Nov 2004

Hi Bob! I am a 46 year old female. Two years ago I was diagnosed with breast cancer and two weeks after that a separate nsc lung cancer was diagnosed. I had a lumpectomy for the breast cancer and my left lower lobe was removed for the lung cancer. I then underwent radiation and chemo at the same time. An Oct., 2003 CT came back clear.

I had a follow-up CT done this Oct., 2004. Unfortunately, my doctor had more bad news for me. The lung cancer had returned, only this time it was in both lungs. Since it was in both lungs and because of the number of tumors, they cannot operate or radiate. Chemo is the only option for the lung cancer recurrence.

Since I was first diagnosed with lung cancer two years ago, the doctors have told me that lung cancer typically mets to the brain. Since I had a recurrence of the lung cancer, an MRI was done and it was discovered that I had 4 lesions in the brain. I met with a neurosurgeon, oncologist and radiologist. They recommended the gamma knife procedure and said it has a 80-90% success rate of eliminating or at least minimizing the lesions. The procedure can also be repeated if new lesions are found in follow-up MRIs.

I wasn't familiar with that procedure, so I researched it on-line. I discovered that the gamma knife is the preferred treatment for brain lesions because this form of radiation targets only the lesions - each one is radiated separately. I also learned from my on-line research that whole brain radiation damages healthy brain tissue and has more side effects than the gamma knife.

I had the gamma knife done on 10/26/04. A follow-up MRI is scheduled for 1/12/05. It is very difficult to sit back and wait not knowing whether the procedure was a success.

If you have any questions about the gamma knife procedure, please let me know.

Good luck to you and your wife. I will pray for both of you and for all of us fighting the cancer war.

keli
Posts: 6
Joined: May 2004

Hi Bob,

Was dx 11/03 NSCLC adeno non-operable. Finished chemo and radiation for one tumor in left lung. When I was offered the PCI it was a tough decision. My sister-in-law died 1/04 because of mets to her brain. After alot of thought I decided I am more afraid of the disease than the treatment. Was an interesting experience. The radiation did a much more thorough job of getting rid of my hair (a girl thing). That was 5 months ago. I have been tired and a little addled but that could also be chemo brain and general recovery from the whole routine. All the chest x-rays have shown everything is stable and looking good. I have a CT and an MRI next month so....... am very positive about the out come. And although it was slow I am getting my hair back! They say side effects can start after 3 months or more but not for me. It's good that you are doing research. I read some real horror stories but figured you throw out the best one and the worst one.

God bless and take time to smile every day.

Keli

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