Having a hard time deciding....

[babylove91297]

Hi everyone,

I have to go back to my radiology oncologist on Monday and I still haven't decided whether or not to have the whole brain radiation.

I understand why they want to do it, but I still don't know if I want to put myself through it if I really don't need it. I have talked to all of my family and friends about it and I have gotten mixed feelings on it. I mean are the chances really that great that it will definitely go to my brain without it.

If I put myself through the radiation does that mean that it will never go to my brain??? I am so confused about this. I really don't know what to do, and Dr. T. wants my answer Monday.

I have a niece who tells me that I am being selfish if I don't do it. She lost her father to cancer a few years ago, and she says that if there is any chance at all that this will save my life that I owe it to my children to have it done. I really understand her, but I still want proof that it is needed for me to survive. I wish I just had a magic answer to this, or that I could pull one out of a hat, this is so nerve wracking.

I go for my pet/ct scan on next Thursday, and that has got me nervous as it is. Any insight on this would be greatly appreciated. And I am so sorry for rambling on, I really didn't mean for it to be this long.

Thanks everybody!

Bobbie

[Connie B]

Bobbi, are they doing PCI on you? This isn't the same from my understanding as WBR. This is PREVENTATIVE radiation and it's not as strong of dose as WBR. BUT, I'm not the doc here! This is my understanding of it.

I can tell you that I know of MANY that have had it that have Small Cell. Not ONE of them is sorry they did it. They don't offer this to Nonsmall Cell cancer patients. They reason they offer to you is because Small Cell is noted to travel to the brain, and they have found that this DOES help to stop it from doing that. Is it 100% full proof? Well my dear, you know in this journey nothing is, but IF it were ME in your shoes, I would go for it! Better to be ahead of the game then behind it.

The ones that I know that have had it had I think it was 12 treatments and that was it. Back when they did it, (8, 9 etc.,etc., years ago) they were told they would be given a lower doseage of radiation being it was Preventative. So, that's my two cents worth. As I said, No one I know who did it, is sorry they did. They are all pleased with it and they are ALL doing WELL today!!!!!!!

Hugs,

Connie

[Patti B]

Bobbi-

No need to apologize for the rambling - I know I would be a basket case, too. I know nothing of this type of radiation but wanted to let you know that I am hoping and praying that you make the decision that is right for you and that the radiation (if you get it) works well.

Am hoping others will come along soon with first hand knowledge of this for you.

Hugs - Patti B.

[SandraL]

Hi Bobbie. I don't have much technical advice for you on the pros and cons/stats etc of WBR for SCLC. I do however know of a lady at my clinic who had it on a preventative basis and was a 5 year survivor many months ago and is considered cured. In her case I know she is glad that she did it. I believe that doing WBR preventatively for sclc is much more common than for nsclc. I do know also that this lady does suffer some from long term side effects from WBR. But I tell you, you would never know it by talking to her. She is a very spry older lady who has all her capacities. The only thing I would say to weigh things up would be to get a 2nd opinion from another doc. Best of luck with your decision...it is a tough one.

Sandra

[recce101]

Bobbie:

From what I read, the benefit of prophylactic cranial irradiation (PCI) in Extensive Disease SCLC is quite clear -- certainly clearer than many other decisions we're faced with in lung cancer. Here's an excellent article by Dr. West on the subject:

http://cancergrace.org/lung/2007/06/19/pci-for-ed-sclc/

For Limited Disease SCLC, the evidence is not as strong. See this:

http://cancergrace.org/lung/2006/12/02/ ... -for-sclc/

Do you know if your diagnosis was changed from LD-SCLC to ED-SCLC when the spread to the lymph node was discovered? If so, that's probably why they say surgery is no longer an option, and that would weigh in favor of PCI.

Best wishes and Aloha,

Ned

[jaminkw]

Bobbie, can't add any technical advice but empathy about the decision-making involved with battling cancer. Hope you check out the links Ned offered. Can't think of any better way to try to get clarity than checking it out with Dr West.

Judy in Key West (in PA)

[recce101]

Bobbie, I should have suggested in my other post that you present your question to Dr. West at cancergrace.org/forums. Tell him you've read the two articles I mentioned and ask if he has any additional thoughts to add. Since you're not his patient, he won't be giving you specific medical advice, but he will lay out the pros and cons in a very clear and objective manner. Either he or Dr. Goldberg (a radiation oncologist) should answer your question within 24 hours, even on the weekend! Aloha,

Ned

[Larry's Wife]

Bobbie, my understanding of SCLC is that WBR is commonly recommended because this cancer has a tendency to travel to the brain.

My husband was referred for WBR due to this fact. Unfortunately, he couldn't have WBR because he had radiation in the early 80's for non-hodgkin's lymphoma and we were unable to obtain the treatment field records from that long ago.

Had it not been too dangerous to treat him with WBR due to his unique circumstances, we would have done it.

Please seek a second opinion before you decide to say no.

Lynn

[dr_lindac]

Hi Bobbie -

My mom had exactly the same thoughts that you are having. My sister and I wanted her to have it, but recognized that it was her decision.

No matter what the numbers are in favor of it, it's your body.

In trying to help my mom decide, I asked her this question:

"If you don't do the PCI treatments and the cancer does move to your brain, are you going to beat yourself up for choosing against it?"

Ultimately, she decided that she'd have too much regret if the cancer went to her brain and she'd not had the PCI, so she had the 10 treatments. She had the brain radiation last November and still has had no mets of her small cell cancer.

Just something to think about.