Friday, May 24, 2013

SBRT - Decision Made!

Well, where did you stand?

Did you guess "yes, she'd do it?"

Or "no, she wouldn't?"

Oh come on, you people know me better than that.  Of course I'm going with the latest and greatest in technical advances - I am one who got her iPhone 1-5 on the first days available, after all.  (And, the 5 is already full, darn it, I knew I should have gone with the 64 gig.)

After sort of speaking to my oncologist, who said it wasn't his specialty but that chemo was destroying my bone marrow and it couldn't take much more and he thought this was my best shot, and then talking to the Radiation Oncologist, who assured me that he thought I would do quite well, and that he and his team had discussed my case and he thought I would not be left worse off than I am now (my big fear) and who answered my questions, I decided to do the SBRT.

So here is the schedule so far:

June 7th, I have Fiducial Insertion.  (No, that does not mean I have a hot date with Donald Trump).  They will be putting little pure gold coils into the liver around the tumor, which will be super fun when I go through security at the airport.  These coils will help track the tumor through my breathing cycle so the machine doesn't send a shot of radiation through the wrong place when I inhale.   The fiducial marker insertion, he said, would feel just like a liver biopsy.

Uh oh.

I got a copy of the surgical report after my biopsy and they had written right into the report that I had experienced undue pain, so it's not just my word.   I am going to contact them ahead of time, ask them to read it and see what they had given me and then up it tenfold.  I'll tell them that I want more medication, better medication, different medication - something, anything, not to feel that I've been stabbed again.  In the ensuing years since that biopsy and today, I have been put on pain management medication, have developed certain tolerances, and whatever didn't work then surely won't work now.  

I know this must be done but they also must help me manage it better than the last time, don't you think?  Somewhere in the patient's Bill of Rights there has to be something about not stabbing a patient's vital organs without proper medication.

June 17th, after the fiducials settle, I'll have a PET/CT scan.  Ho hum.  After that, they start the planning process, which I'm sure includes very technical stuff involving Gy doses and positioning and the like.  I read that they create some sort of foam/bead bed that is designed to your body and keeps you in the same position each time, which should be fun.  Maybe I can make a "bead angel."  I will have five treatments, or fractions, probably starting the last week of June.   Then, I'll be done and we'll wait to see if it breaks up the tumor, via another scan in a few months.

Of course, it is possible that at this point, after the marker placement and scans they could say I am no longer a candidate - they may see cancer encroaching on the portal vein or something else disturbing.  

But if it's a go, here are the possibilities:

Best Case "One Can Always Dream for a Miracle" Scenario:  It destroys my tumor, and nothing ever grows back. I'm cured of metastatic breast cancer.  That happens approximately never, but I could be one of the first, you never know.  Here is one study where they called the woman cured; the only thing is, they only followed her for only two years.  That's one way to get the result you want. "Hey, we saw this 70 year old dude who didn't die in 2 years, that meant he lived forever!"    Personally, I wish I knew how she was doing now and if she's till "cured."   I'm guessing no but I'm a cynic who has never heard of anybody surviving this disease to live a normal lifespan.

Next Case, Most Likely, Good Scenario: It destroys the tumor for a while. I get to go off chemo for a year or two. (Although will still be on Zometa and Herceptin and ....perjeta? Not sure about that one.)     I get a break, get to do the things I want to do with my family like go college shopping with my son, see him graduate, decorate his college dorm room, and do all that with some modicum of energy and ability before the disease comes back and I must start chemo again.   This is what has been published about SBRT for oligometastatic breast cancer:    4-year actuarial outcomes were: overall survival of 59%, progression-free survival of 38% and lesion local control of 89%. 

Bad Case Scenario:  I do all this but it doesn't kill the tumor and I'm still on chemo and now with a radiated liver having to process these drugs.  I pee florescent and we have to hire guys from the Fukushima Daiichi Plant to clean our bathroom.

Worst Case Scenerio:  Something goes wrong, a beam hits the portal vein, liver function disappears and this blog finally ends.

A moment of silence for that.

So, there you have it.  Except for the fiducial placement, I'm okay with this plan.  It is a relief to have made the decision, whatever happens.


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32 comments:

  1. Sending you all my love on the wings of a desert sparrow. It must be a relief just to have made the decision. I am praying for the best.

    Big Love,
    Deb

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    1. http://cancercureslife.com/?blogsub=confirming#subscribe-blog

      Please read this blog about a friend diagnosed with stage four esophageal cancer in Feb and is now cancer free. Please post this blog on your site. I want everyone with cancer to know about this. Best of Luck.

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    2. cant even imagine what comfort I could bring. Just want to tell you that you have changed my life in one day, because I just found this blog. Peace

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  2. I like your scenarios, and I hope that it is best of best case.

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  3. Wishing you all the luck and love in the world, Ann. (And I was in the "Yes, she'll do it" camp.) Ann in England. xxx

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  4. I vote for the "one can dream of a miracle" scenario!

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    1. And, I found this one: http://www.ncbi.nlm.nih.gov/pubmed/22532161

      Ten years!!! So, that is what I'm going for, why not?

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    2. You must feel so much better for actually coming to a decision. I'm in the same camp as Ann (also from England) - I thought you would give it a go. I think, if not, you would have always wondered "what if".

      You know so much more now than when you had your biopsy, about what your body can and can't tolerate, so I'm sure the doctors are more likely to listen to your requests for the right pain relief. They're not messing with any novice here!!

      I know it's human nature to be cautious, but these good news scenarios - they do happen to people - and why shouldn't you be one of them. You deserve a break and I am so hoping that you will be included in the good statistics.

      I am liking the ten years idea. That's an awful lot of blogs! X

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  5. Joan Oliver EmmerMay 24, 2013 at 4:38 PM

    Can they put you "out" completely for the Donald Trump insertion?

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    1. Maybe Melania knows, I mean, she must have a way to handle this situation. :)

      I don't think that they will do general anesthesia as that requires a breathing tube and an anesthesiologist but they should have a way to give me enough drugs so that I don't feel anything, or anything major anyway.

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  6. I am glad you are throwing all they have at it. Our Steve made it much longer than they said because he threw it all at it.
    Praying for a pain free procedure

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  7. Just wanted you to know I'm thinking of you... and of course, laughing my ass off at your usual irreverent style... I think the line about The Donald wins in this post.

    Every time I read a post, I find the best line .... that definitely wins this one...

    Holding you oh so close to my heart, friend....

    xoxo

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  8. Love your humor as always. I am glad this is the choice you've made. I'll bet even Donald Trump doesn't have a gold-plated liver.

    The last time I had surgery I told them I didn't want to see anything, hear anything, smell anything, feel anything, or remember anything. They did not give me the tube-down-the-throat treatment, but sure enough I didn't see-hear-smell-feel-etc. Surely there's something they can do for you that won't require complete general aneasthesia but will still keep the pain at bay.

    Thinking of you, as always.

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  9. Ann I always follow your blog and comments on the site. Your strength and determination in dealing with all you have gone through is inspirational. You are right to do what ever you can to get the best outcome you can. I am hoping for a miracle here Ann, you deserve this. Lois

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  10. I think you have reason to believe you will do well! As a breast cancer "survivor" myself, I've always felt that positive thinking is a big help. I know that the outcome will be what it will be whether I think positive or not....but being positive and hopeful helps me to cope better.
    I think you should ask for some SERIOUS drugs so you don't fell them putting in those gold coils! They owe you that!
    And by the way, miracles DO happen, I've seen them! I agree with Lois...you deserve one!

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  11. Ann, I think you have all the Faith, Hope and Determination to make this work for you. I the the BEST CASE Scenario is for you because as Nancy said, "Miracles DO Happen" but if not that then for sure the Next Case Scenario. You are an inspiration to all of us and my thought and most importantly, my prayers are with you and your family.

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  12. Ann,
    I am rootin' for you. You're wit and humor got me to laugh my through breast cancer surgery and chemo.

    You are the best and you deserve the best.

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  13. Ann,

    When my daughter had her double mastectomy recently, her anesthesiologist use a nerve block on her, which he explained was just like a spinal block they use in childbirth, but given not in the spine, but in her case in her back area on both sides. It allows them to completely deaden the nerves, and allows them to use less general anesthesia during surgery, and lasts for 12-30 hours afterwards. I wonder if something like that would work for you? Best of luck!

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    1. Here's something interesting I found from some googling: http://bjr.birjournals.org/content/81/961/e23.full.pdf

      ABSTRACT. A 66-year-old man presented for a second attempt of radiofrequency ablation of a metastatic carcinoid liver lesion. The first attempt using intravenous sedation was unsuccessful because of inadequate pain control and subsequent patient combativeness. Despite fentanyl being given during general anaesthesia, the patient complained of severe right flank pain after emergence. A thoracic paravertebral block was performed without complication and the patient’s pain decreased to ‘‘3 out of 10’’ on a standard 10-point scale after 10 min, and ‘‘0 out of 10’’ after 30 min. The patient’s pain score remained 0 throughout the following day, and no further analgesics were required. Thoracic paravertebral block can provide complete and lasting analgesia following hepatic radiofrequency ablation, and warrants further study for patients undergoing hepatic radiological interventions.

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  14. dear ann,

    i am so glad you've made the decision. and yes, i completely agree, you very well could achieve the best case scenario goal. good you are zeroing in on GOOD DRUGS.

    the donald thing is hilarious! the picture in my mind though involves the comb over, some funny shit happening there!

    sending you warm and gentle hugs as you approach such a momentous chapter in your desire to keep living. we need you, we love you.

    XOXO,

    karen

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  15. well, I'm glad to read the most recent update! I wasn't sure which way you'd go but I think I'm glad you decided "YES". Sure, some of it sounded a little risky, but I think we're all thinking positive! I know I am. I can't imagine how much thinking you did to arrive at the decision you thought was best. Good for you!

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  16. Ann, just started reading your blog and I agree ... Give it everything you got. Easy for me to say! But really, I think your decision is good and you are always in my heart and my thoughts. I hope they will find much better pain management for you. xoxo

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  17. Glad the decision's been made. It goes without saying that I'm rooting for you too, Ann, and hoping the "One Can Always Dream for a Miracle" scenario comes true. You'll be in my thoughts.

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  18. Demand that the anesthesiologist listen to your request. Those folks have the means to give you what you need and want, a pain free procedure. And your dr. should want the same so it doesn't have to be repeated. Here's my wish for the best of the best results!! Indeed you do deserve it!
    Meg

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  19. Hi! I start my 2nd Rad on wednesday for my 3rd tumor (chondrosarcoma), and i loved the way you write and your sense of humor! I hope for the best outcome, im rooting for it !! Go girl!!...

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  20. it sounds like you made the right decision. Your body needs a break from the chemo. Wishing you the best of luck, we will be rooting for you!

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  21. Hello Ann,

    I don't know you, and I honestly can't even remember how I stumbled onto your blog, but I did, and I absolutely love your writing and your resolve. I will be praying for you that the procedure is painless and that you kick cancer's butt. :)

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  22. I was going to start with the same line Anonymous did above me .I don't know you, stumbled onto your blog. . but it's true. I do know when I was initially being diagnosed I searched the internet high and low for just about all things breast cancer. I ended up with a mastectomy and clear nodes. The truth is I almost feel guilty that I got this dx and maybe I should go away and not read your blog because it is what? I don't know but I assume it is ok to read your blog because heck you are funny. And frankly I had already diagnosed myself w/metz because I knew something was wrong but ignored it because heck I had mountains to climb. I figured God love me but was taking my life because I didn't appreciate it enough. But he gave me a reprieve and I hope to make the most out of it. I hope and pray for you Ann that you get your miracle cure, or at least many beautiful years of college dorm room decorating.

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  23. Ann, you are always in my thoughts, and I send you my very best wishes as you embark on this new treatment.

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  24. Ann, thank you for your blog. You inspired me to start my own (after spending days reading all of your posts).

    Good luck tomorrow, you're in my thoughts. I hope everything goes swimmingly and does what it's supposed to.

    Best wishes and many e-hugs. xoxo

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  25. Ann, go for your miracle. But ask for some really good good pain meds. God bless you.
    I go for my faslodex shots today (hormonal treatment). Yes, I whine. It hurts worse than any of the other shots I've gotten. I hate the side effects. I am also grateful that so far it's working. Also grateful it isn't as bad as chemo or surgery was. Can't imagine what you are going through.
    I think there is something about cancer treatments that those who haven't been there don't understand. Maybe it is "I'm going through all this and the results are just a maybe, just this will give me a chance?" (And sometimes when our families are being real pains - aka acting normal - we feel like saying look at all we go through just so we can stay here with you! OK, I haven't actually said it, but I feel like saying it!)
    Anyway, go for it. Those of us who have been there so understand going for the chance. We do it to see our kids grow up. We do it to see grandkids a little longer. We do it to be with our husbands a little longer.
    Love your ability to see the humor in it all. You're an inspiration. Best wishes and prayers.

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