If your chose NOT to have PCI-or had PCI and got mets anyway

[jcawork]

Hi,

Its now time for me to suck it up and go get my PCI. I have had the sim and face mask made. I am scheduld for 3/21 to start.

Of all of my tx's this is the one I am dreading the most. I have many reasons. I have spoke or emailed w/ a number of people who HAVE had PCI, I would like feedback from people who chose not to have it as to why and if they are happy w/ that decsion.

I would also like to hear from people who had PCI and got mets anyway because I don't have a good sense of how well it works-or not. If you got mets, how long after PCI.

Thanks in advance.

Jen

[bev]

Hi Jen, I am just finishing up my l5 rounds of pci I have 5 left to do. I was also very leery to have it done. But from all that I have read it improves survival rates . So I said bring it on. I Also feel this has been the hardest part for me only because I have developed an irrational fear of having to lie still on the radiation table. I was getting panic attacks which made me feel that I was going to jump off the table in the middle of the process. I did my slow breathing for a while which helped, But I finally said to myself one day why am Suffering each day with this fear, so I asked the doctor if she could prescribe something for me . So now I take one ativan before my radiation treatment. And what a difference it makes for my day. Also the steroids that they have you on so the brain does not swell, were hard for me in the beginning. They affected my sleep. I felt I was becoming very aggressive, with no patience. But I am on a lesser dose now so I am feeling much better.

Hope this can help you in some way.

[Cindy RN]

Hi Jen!

As you know I chose not to have it done.

WHY? Well after talking with the Dr about it he said if it spread to the brain I could always have the rad. tx to that area then. He said it was my choice and after discussing this with a few people who have had it I decided the risk did not out wiegh it for ME.

Everybody has to make their own decision on this one.

Hope you do well!

Love Ya Cindy

[Larry]

HI Jen"

My wife is now finishing her last 5 treatment's of radiation (she has 15 total) like a previous writer my wife has had emotional problem's with the steriods ..She did not have PCI as she was stage 4 when first DX'ed..The radiation is fast and normaly around 10 minutes.Today she started topotecan and zometa for her bone's as the cancer is now there.

Jen follow your feeling's but give your self every chance available in beating this dreaded BEAST......

[SandyS]

Jen -

You know I chose not too also.

My mother has severe Parkinsons, which is hereditary, and I just couldn't get past thinking that the PCI would damage my brain or bring on the Parkinson's. Nothing medical to back that up - just my fears.

Well, and then at the last moment, they weren't sure I was in remission (suspicious thing in adrenal), so they removed it as an option anyway.

Good luck with the process, and like someone else mentioned, don't be afraid to ask for something to relax you....

Hugs and prayers,

SandyS

[berisa]

my dad was very unlucky that he had the brain mets around 3-4 months after PCI done. I don't have answer for go or not go for PCI, but I know dad started feel bad after PCI done...I guess if he could had another chance, he will not choose to do....for myself, same -- not do becoz sooner or later brain mets will happen, the brain got burn during PCI and WBR is not an option for treating his relapse brain met.

[Mandorg]

Jen,

I just wanted to add my own two cents worth, let you know that you are not alone in finding this a VERY difficult decision, and share just a bit of my own current PCI experience. I spent alot of time with my radiation oncologists disucssing the PCI and had him off searching for studies to give me as much statistical information as I could get. From the studies he cited, the chances of metastasis in the brain can definitely be reduced by up to half. It doesn't reduce the chances to zero, but I'll take a 1 in 10 chance over a 1 in 5 chance any day.

The concept of "preventative" radiation to your brain is definitely daunting. But I knew, for myself, that given my age (42) and my improving health (NED currently), I had to give myself every opportunity to live another 42 years, or more... Yes, it is frightening and uncomfortable. I had radiation to my chest for cancer in the lymph nodes and did not find that experience to be daunting. Admittedly, the radiation to the brain had me shaking in my boots. My wife and I spent alot of time talking and we both knew that any effects of the radiation were going to be minor in the grand scheme of things compared to the alternative of metastasis of cancer in the brain.

I first posted here only a week ago when I had just started the PCI and mentioned how hard a time I was having. This community has definitely helped me feel that I am not alone. I have since found a way (a visualization) that helps me through the actual treatments. I've had alot of adverse reaction to the decadron I'm taking to counter the swelling, but it is important to understand that the reactions are only the medication and that it is temporary.

I'm not trying to talk you into it, but I just wanted to say don't let the fear intimidate you. You are obviously a strong woman to have come out the other end of the chemo and treatments you've endured so far.