PCI - Question for CindyRN, other long term survivors

[Starr13]

I am wondering if any of you had PCI, and, if not, why you declined the option, or, if you did get it, if you're having any particular side effects? Are you happy with your decision either way?

My oncologist raised this today (January-February decision I guess) and while I was expecting it, I noticed that not many people who are in remission from this seem to have this in their profiles.

WBR comparatively seems to be for palliative care only, is that correct? (Please forgive me if I have this wrong.)

[Geri]

I was offered PCI and declined. I had no symptoms and my brain MRI's had always been clean so I decided against having it.

I am now celebrating my 6th anniversary of survival, lung cancer free, and the choice I made not to have PCI turned out to be the right one.

I wish I could advise you on your decision, my roll of the dice turned out to be a good one but I had also had very quick results from my chemo.

Take care

Geri

[Starr13]

Geri, thank you for your reply. I have extensive (liver mets) but, scans after second chemo showed 85% reduction in cancer and liver mets gone. Brain MRI at time of diagnosis was clean, and I haven't had any side effects with chemo. My logic was that if this wanted to go to my brain it would have been there already, but, that may be flawed thinking.

In any event, I now know of four "long term surivivors" who have declined PCI and it has been the right decision. I haven't heard from any extensive survivors, but, I would think the logic might apply the same way? I also haven't heard from any sclc limited survivors who have received PCI.

It's a hard decision because on the one hand, all of the medical reports say it just about guarantees a free pass from brain mets, and sclc seems so unpredictable. On the other hand, the side effects seem drastic, and, if a brain met suddenly showed up, there would be treatment options (gamma knife, etc.), correct?

[john]

I thought PCI was offered mostly to limited SCLC not extensive. But it does appear that PCI is offered for both now and even w/o complete remission.

PCI does not guarantee to stop brain metastasis but it seems to reduce the chance (a study showed 14% PCI vs 40% non-PCI)

http://www.cancer.gov/clinicaltrials/re ... =&keyword=

http://www.asco.org/portal/site/ASCO/me ... ctID=30335

Good luck with the decision

[dchurchi]

My husband unfortunatley had a brain met so had WBR

and not PCI. Alan has survived 2.5 years since WBR

and on Jan 10th of 2008 will be a 3 year survivor of

extensive SCLC. Alan has had some minor side effects

associated with his WBR, short term memory loss,

dimished hearing in one ear, but all things considered enjoys a good quality of life.

So Alan didn't have a choice, given a choice I am

afraid I can not answer your question, but wanted to

share our experiences with you just the same.

[ztweb]

When my dad was offered PCI, we were told that was for those who have a potential cure...so in my opinion, the fact that you were offered PCI is GREAT, GREAT, GREAT!

My dad did have the PCI, and we have never yet regretted the decision. It was very scary though...I think if you go back and look at my posts, you will see that this was one of the hardest decisions we had to make.

We are over one year out from it now (after the time they say you will see side affects) and I can say that we do see minor changes in dad.

1. His hair is not growing back like it did just after chemo. (whoop-d-do!)

2. He does sometimes have memory issues. They are not big, but more like the simple things we have when we are stressed..."who was it that just called?" "where did I put my keys?" Sometimes this frustrates him.

3. Sometimes dad seems down and out and we don't know why...I mean, that is probably a stupid thing to say...we know why...he had cancer!...but there doesn't always seem to be a trigger spot that is very clear.

Best of luck to you! My prayers are most certainly going your way!

Jen

[Connie B]

Two of my In Person Lung Cancer Support Group members of Small Cell Lung Cancer (one being a 7 year survivor and one being an 8+ year survivor) both had PCI. Both of them are very pleased they did it.

One gal had limited sclc and the other had extensive sclc. They are both doing VERY WELL today and remain cancer free. They did it as a preventitive. They did NOT have brain mets.

[john]

Not that it matters but PCI is WBR.

http://www.lchelp.org/l_community/viewt ... 1b52decb77

I think there have been trials for low dose PCI, but the response-dose curves show that below a certain dose it does not work.

[dscherer]

I am glad that PCI was offered that is a very good sign.

I know it is a very difficult decision to make. My mom choose to have it done. Research does show it makes a difference. Chemo can't penetrate the brain because of the blood brain barrier. My mom hasn't regretted it for a moment. Her side effects were minimal. A little short term memory, but chemo can do that to. She had it done in June-July and her hair is finally starting to grow.

I do believe there is a slight difference between PCI and Whole brain(I believe in the intensity) but I will have to look back in my notes. (I wrote everything down every Dr told us!)

I believe everyone has to make the decision that is right for them. I will send prayers out as you make these very difficult choices.

Prayers to you and your family,

Dana

[lc46]

My Mom who also has ext small cell had a brain met May/07 so she got WBR-her brain has been clear ever since. My Mom has had minimal side effects-short term memory loss-(but she had that before cancer also-just from getting older). My Mom had clear brain mri's from Sept/until May when they found the 1cm met. Good luck in your decision.

Dar