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PCI - desperately caught between a rock and a hard place


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Guest bean_si (Not Active)
Posted

I don?t know who to believe. I have SCLC (I don?t smoke) and underwent radiation and chemotherapy at the same time. I am 58 and completely on my own. This was hard. The doctors acted like I was a miracle and the 8.5 cm tumor in my right lobe was dissolving.

Dissolving? I purposely picked up the after radiation/chemo tests and found it was still 5.6 cm. After I reported seeing this report, they then gave me the ?maybe it?s all dead cell? but I?m doubtful.

At first the radiation oncologist and medical oncologist (two separate doctors) talked about PCI after I told them that I heard brain metases could be as high as 40 to 50%. They expressed surprise that the percentage was so high and the medical oncologist asked if I was sure.

Now, though I don?t consider myself anywhere near ?cure? they?re talking about PCI because they are NOW saying 50% of people get brain metases. (didn't they just debate that figure with me????) I pointed out that I had already had brain injury due to an ruptured (bleeding) aneuryism many years ago. My radiation oncologist of four months said: ?You had brain injury?.................Oh, yeah, you did.? I told them that no study had yet been done or reported on giving PCI to those with previous brain injury. They expressed they didn't know this.

I have seen some anecdotal material (there?s been no actual study) that shows that people with MS or other brain injury have gone into coma and died after PCI.

Also, although the first years after PCI generally go well, there are few if any studies of people surviving after 3 to 4 years with brain intact so the stats could be misleading. Yeah I know - if the cancer had gone to the brain, the person would be dead and not a participant in the study. Oh geez.

I?m totally confused and have no where to turn. I don?t have the financial or social support to seek help anywhere but in my HMO community.

I?m ready to try complementary meds: meditation, imagery, Chi Kung, anything. I feel caught between a rock and a hard place. I'm really scared.

I hope this message makes sense. I would appreciate the smallest gift of help. Thank you. :(

Posted

Bean-si...welcome, though it's terrible that you needed to find us.

My mom also has sclc. She is struggling with whether or not to have PCI, also. One of her onc's is in favor, the other opposed.

What I have read is that up to 60% of lc patients get brain mets. PCI is supposed to cut the risk in half. So 30% will STILL get brain mets.

It's a very individual choice, and the information on long-term effects is pretty sketchy. You have every right to refuse PCI. I think my mom will decline the PCI, due to concerns about possible impaired cognitive function.

This board is wonderful for support. Please visit often.

Posted

Oh my you are in a quandry! I think you need a second opinion. I am not familar with HMOs but surely there is a way to get a second opinion. My husband did have the PCI--- I am not sure it was a good idea. But everything I could find to read about it led us to believe that to not have it would be a mistake.

Posted

I wish I had something in the way of concrete research to offer you, but I don't.

You might want to look up info on a possible alternative to PCI called Intrathecal Chemotherapy in lieu of PCI. I've known two people who chose this route. One was a limited small cell survivor who chose the Intrathecal chemo instead of PCI for several of the reasons you mention. This was NOT conventional treatment and I'm not sure how he got his Docs to go along with it, but the results were that he lived for over 5 years with no loss of cognitive function, and died of another type of cancer (leukemia) with no recurrence of the small cell. The other was a gentleman who had Adenocarcinoma who chose intrathecal chemo. I've lost track of him (he was in his late 70s) but last I heard of him he was doing fine 2 years out from the treatment. Neither of these men had carcinomatous meningitis. They both chose Intrathecal Chemo instead of PCI to try to inhibit brain/spine mets.

It's just a suggestion. I am not a physician. But intrathecal chemo is what I have decided on if I should have brain mets or spine mets at some point.

Best wishes,

Fay A.

Posted

I'm sorry that you have the necessity to find us, but thankfully the people on this board will be a great support to you.

From my experience, PCI is a debatable topic even for one doctor! My mom's oncologist first recommended it, then told her not to do it. Basically he said that she was a limited stage patient, she was doing very well with the chemo (in complete resonse for l6 months) and he was worried about the PCI affected cognitive functioning. So she didn't have it done.

I agree with the poster who advised you to get a second opinion. Hopefully, that will give you enough info to make the best decision, especially considering your special circumstances and concern about your past brain illness and how it will be affected.

Let us know what you decide.

Hope

Mom dx with sclc limited stage 0l/02

5 months chemo (carboplatin & etoposide), radiation, no pci

06/03 Recurrance found with follow up c/t, chemo (carboplatin & etoposide) began then stopped due to severe reaction

07/03 pet scan concurred ca in sternum

09/03 ct shows ca spread

09/03 Three 28-day cycles of cisplatinum & cpt-ll

12/03 some tumors responding, began 2 more 28 day cycles cisplatinum & cpt-ll

02/04 No growth, no reduction of tumors. Onc decided on a 4 week rest period to be followed by CT.

03/04 CT shows growth and additonal tumor in renal gland. Decided on l/2 dosage of cisplatinum and cpt-ll. Has severe reaction to chemo and has a seizure. Onc says we will now try Taxol or Gemzar.

Posted

You do have a tough decision to make. I would wonder about the effects with a previous head injury also. A second (or even 3rd) opinion should be requested but it still comes down to what YOU think is best for YOU!

Best wishes and prayers for guidance headed your way.

God Bless,

MO

Guest Karen C
Posted

Get another opinion. Or maybe even try to get another oncologist (don't know how easy this would be on your HMO). These guys are waffling around too much, it sounds like they don't know the latest on everything. Dave's radiation and regular oncologists were SURE of the route he should take in every step. He did have the PCI, too. I just read Marilyn's (Wenna's) post and I have to say that he had nowhere the problems that she has had, but it did affect him some. But as we say, much better than the alternative. MO said if PCI gives her one more day with her grandson then it's worth it. We say if PCI gives Dave one more day with our two year old daughter than it's worth it.

Karen C.

(David C's wife)

Posted

Now that is the question. Hi bean-si & welcome even though it's not where we want to be but the support here is wonderful.

I chose to go ahead with PCI (even though I was as confused as you are about it) as I wanted to do everything in my power to fight the beast. As it turned out I developed 2 brain mets before having PCI so the desision was made for me after all. If your HMO allows you to have a 2nd opinion do so. I did not as I was very comfortable with my Docs. Good luck to you & continue to join us. It really helps allot. Rachel

Guest bean_si (Not Active)
Posted

Thanks for all the replies to PCI - caught between a rock and a hard place.

I admit to being more frustrated and scared than before. I've searched the net and it seems no one lives very long with SCLC even undergoing chemo and rad and other unbearable treatment (including doctors who think they are G*d)

I am a writer. I used to write at least a half dozen poems a day, short stories, etc. Veteran's Day 2003 when I found out I had this cancer, my words disappeared. I could no longer write - not one single word. Recently I began expressing myself in pastels and ink sketches - angry drawings. This week I began writing again. For years I ran an art and literary magazine but that all stopped in November.

I feel as though I'm invisible, even to myself. Where did I go? How do I get myself back? Why should cancer do this? Is that it's power - that it makes you so vulnerable you can hardly bear it. Or is it because I'm alone?

Sorry for the rambling. I can't sleep anymore either. I keep thinking I can "cure" myself with alternative treatment - then I wake up.

I am sad.

Posted

I am a writer. I used to write at least a half dozen poems a day, short stories, etc. Veteran's Day 2003 when I found out I had this cancer, my words disappeared. I could no longer write - not one single word. Recently I began expressing myself in pastels and ink sketches - angry drawings. This week I began writing again. For years I ran an art and literary magazine but that all stopped in November.

I feel as though I'm invisible, even to myself. Where did I go? How do I get myself back? Why should cancer do this? Is that it's power - that it makes you so vulnerable you can hardly bear it. Or is it because I'm alone?

Sorry for the rambling. I can't sleep anymore either. I keep thinking I can "cure" myself with alternative treatment - then I wake up.

I am sad.

bean_si,

I too am one of the unfortunates fighting this beast totally alone. Oh my sisters and brothers have gathered around me, they take me to appointments and call more often than before. But I am a single (never married) woman with no kids, no significant other, and of my 2 best friends, 1 is in Seattle and 1 is in Michigan, while I reside in Florida. :) So I know what you are going through.

However bean_si keep this in mind, in the end every cancer patient faces the beast mostly by themselves, as no one else can understand what each person faces. Because in the end it is up to the patient to do the hardest fight, and that is the one in their mind. You can give in to the beast and let it rob you of whatever time is left, deprive you of your words and your art, or you can sit down and start writing. Write a journal, write nonsense, write lists, but write until the words and the tears are flowing together and you take back from the beast your words!

I hope the words come back for you and in addition to fighting the beast physically (sp?) you are able to wrest the words and art back for your enjoyment of life.

Keep me posted on how this goes and if you want PM me when the loneliness gets to you, I can sympathize!

Blessings

Betty

PS, Connie knows of 2 long term sclc survivors, one 4 yr and 1 5 yr (I think) so there is always hope, and it doesn't always win! :D

Posted

I haven't posted in awhile but with all the questions surrounding brain radiation I feel the pull to share my thoughts.

When my FIL was faced with this decision, I researched all I could but mainly looked to what folks on here had dealt with. He decided to do the PCI after his scans were clear last May. However, nobody at the drs offices shared with him that they were going to have to strap his head down in a mask like thing to be sure of no movement. It made total sense though and he pushed aside his leariness and gave it a try. Unfortunately he had a major anxiety attack the first time. They offered to give him some meds to combat the anxiety but by Father's Day he announced his decision to not do the PCI after all. Within a month of that decision, July 18, he was dxd with 8 mets to the brain and instead of the PCI underwent the full brain radiation. Somehow the anxiety attacks subsided as we were now in the big serious battle. We also learned he had mets elsewhere as well. Sadly, we lost him on August 13 to this damn disease. I have to admit that my husband and I wonder if he'd done the full PCI if we would've had longer time with him. We would've taken even a few more weeks with him and treasured them in our hearts as much as a few more years. Each day is just so precious. We never had a chance to really see how the radiation affected him because everything happened so fast.

I do want to add that I have a student right now(I teach middle school) who has fought brain cancer for two years. He has had the full brain radiation as well as chemo. He is now in remission(Praise God!) and he is furiously bent on being all that he can be. His brain takes longer to process some of the info. Getting stuff from the brain out through hand and pencil takes longer, but we have our ways to help him cope. Bless his heart he doesn't want too much special treatment, but he has allowed himself one more day on assignments finally after my offer of this in the fall. He is my brightest student-out of 80 kids I teach-though not the fastest. So I hope he is a testimony to the idea that brains can survive this radiation. It seems to me from what I've seen in him and read about by others here that brain function will be diminished only in certain areas and coping with those are worth it.

Of course, doing PCI is a decision each patient has to make for themself, I know, so there's only so much folks here can say or do. I just thought I would add my two cents in case they would be helpful.

I am so sorry you are having to deal with this. If you haven't yet gone to www.blochcancer.org site yet, you might find that helpful. There is some info on obtaining other opinions and such, even without insurance coverage I think.

By all means, let the writing flow if you can. Let it be your therapy and your way of keeping the beast at bay or battling it head on. Bless you~

Karen M.

Posted

Bean_si, please remember that there is no diagnosis that somebody somewhere has not outlived. And nobody except God knows who will be the one-in-a-million.

If some crazed lunatic broke into your house, stole all your money, and left you a bunch of lottery tickets, would you throw out the lottery tickets before the drawing? I bet not, because as lousy as the situation is, someone will win. Maybe you. LC is kind of the same idea.

Anger, fury, and depression are all common with cancer. Eventually, you learn how to get back some of your life and go on from there.

I hope we can help you feel a little less alone.

Posted

I cried when I read gerbil runner and found comfort when Betplace told me her path is similar to mine. I can't remember all the names now (already brain injured, remember:) but thanks to all.

I would write more but I'm feeling like I'm under a blanket of depression. However, given my age, the fact that I am already brain-damaged and completely alone, I sincerely believe PCI is not the choice the Fates would have for me. That doesn't mean it isn't right for someone else. We can only choose based on individual experience - much more that than what some doctor decides for us.

I can do my creative imaging, listen to my music, draw, write and hope for an alternative as I strive to live on.

BTW: My dog is an over-warped Maltese puppy. Very very over-warped. :roll:

Guest bean_si (Not Active)
Posted

That last post was from me :oops:

I forgot to sign in and then forgot my password. Yikes :roll:

Posted

Bean Si

I am glad you have made your decision. It's the indecision times that are the most stressful. I know how it feels to be alone with this. And like Betty said, in the end we are all alone with this disease. Pls PM me if you need or want to talk. There are many people here who can offer whatever it is we have.

Elaine, also a writer

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