Monday, May 20, 2013

Stereotactic Radiation - Decisions

My last oncologist appointment was interesting.  We were discussing how difficult Gemzar is for me and how my blood doesn't seem to recover anymore.   My doctor stood up and said, "I'm going to make a phone call about you" and left the room.

I was left wondering who he was going to call about me.   President Obama to discuss me in context of health reform?  Angelina Jolie in the context of prevention?  His wife as an "I can't believe my patient said this" conversation?

Who?

He came back in and said that he called a doctor in Radiation Oncology to see if I qualified for SBRT, which is short for Stereotactic Body Radiation Therapy.  He hadn't reached the doctor but said he'd try again and get me a consult.

SBRT is like Gamma Knife, a more common term that you might be familiar with.  There are several different names for it, but basically, it is a highly focused beam of radiation designed to kill tumors.

Killing tumors sounds so easy, doesn't it?  

I wish.

Within a couple of days, I got a call for a consultation.  The radiation oncologist and I had a nice chat about my history, as well as some mutual friends we share,  and then he said he thought that I would be a candidate, my tumor is the size they like, but that he would meet with a group of doctors and discuss my case.  They would contact me in about a week.   He did say that because my tumor was so close to the portal vein, "very bad" things could happen, and also said that it was "risky."  He explained the process and then he handed me a tri-fold brochure and introduced me to his assistant, whom I am to call with questions - and left.

I figured I had some time to research this and talk to others who may have had it and get some kind of idea whether this is in my best interests, or if it's just going to make me weaker.  Weaker, at this stage, would not be good.  I am having whole days where I can't get out of bed anymore.  I am not sure my body can take any traumas.

But, the very next day, I got a call for an appointment to insert something called "fiducials" into my liver which helps them track the tumor through breathing movements.  (By the way, these fiducials are appropriately named - they are pure gold.  I will have a very valuable liver.)  That appointment is June 7th.

Clearly, I had misunderstood the intent of the consultation and what was to happen.  In the doctor's mind, it was a third date,  and in mine it was a handshake in the street with the promise of coffee later.

In the mail today, I got blood work requests and surgery day instructions.

Too fast!

Because I thought that nothing would happen until my case was discussed at the tumor board meeting, I didn't ask many questions, and yet things are moving on very rapidly, and I still have not entirely decided whether I want to do this or not.  As it turns out, I do have many, many questions about this.

Even googling and reading real literature and journal articles doesn't help me, as just about everything I find has to do with HCC or colon metastases.  Not only do I have breast cancer, but I have had a liver resection already so that plays into this decision.  Have they ever done this on somebody with half a liver?  The cancer is near the portal vein too, which is why he said this could be dangerous.   One cough and I could be left with no liver function.

It really could go very badly.

Let's keep up hope though, and say it is successful and does kill the tumor.  I could likely be off chemo for a while, which would be amazing.  Maybe I could even have a period of normal living again.  Maybe I could travel, visit friends and family and knock some things off my to-list.  Maybe I could just do normal things like cook and eat.  That would be incredible.

As we all know though, even with success, cancer will come back, and I'll need to be back on chemo at some point.  Will a radiated liver be able to handle the chemo that is to come?  Can they really be precise enough to target only tumor and leave the liver alone?

What about the resection - how does that play into it?

So I guess another date is in order because I don't feel I have enough information to make a good decision.

Back in the early days of metastases, cutting out half my liver wasn't something I even questioned.  I feel very differently now.  That surgery did me no good and I now know that things can and do go wrong in these cases, even in the hands of experienced professionals.

Do I want to risk what little life I have left?

In the past, I've had trouble deciding which pair of shoes to put on in the morning, or what kind of sandwich to get at Subway.....and now this is the kind of choice I must make.

How on earth do you make a decision like this?

46 comments:

  1. Know that whatever you decide is the best decision for you. (Also remember that there are people out here praying for you.)

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  2. Those are some interesting points to ponder. I'll assume the closing is rhetorical, as I wouldn't have the faintest idea of an answer. Closest I can think, do it on your terms, e.g. meet for coffee. ;)

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  3. Ann--you always ask the tough questions! I'm sure if you need more time to discuss all the possible side-effects, etc. they will give it to you (I hope). No one should be rushed into a decision like this. I have heard really good things about this procedure but it's always good to get all the facts you can for your particular situation!

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    1. They will be there is always the possibility that the tumor will grow too big to have the procedure, especially since I'm skipping chemo after chemo. So time may be of the essence although that is another question to ask.

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    2. Ann- I do understand... I'm sending you lots of good positive energy. I hope you can get answers to your questions and make the best decision for YOU!

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  4. Ann... Here's how I see this... if you do not get this treatment, you know how the next chapter in your book reads. However, if you get this treatment... your story is still being written. You could have a significant amount of time with NEDS. Even if this doesn't work... well, unfortunately, you're still just in the same chapter as you would have been without it. Granted... the chapter might be a little shorter but still the same outcome. You are a very smart lady and you know the right thing to do for you. Sending you all of my strength to help you get through this... Good luck!

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    1. All true. But will I have a better shot at my son's graduation with this treatment, or without? That's the question......

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  5. Ann,
    THanks for sharing this story. YOu always lay out things so we can understand what you're going through and the medical issues as well. 'll be praying for you and know that you'll make the best decision you can make based on the information and knowledge you have at the time because that is all we can do.
    Margaret

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    1. Thanks Margaret. You are right, all we can do is inform ourselves as best we can to make the best decisions. I'm lacking in the information area so I need to fix it.

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  6. I will pray you make the right decision for you. And that you can LIVE (not just survive) with it! Much love.

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    1. Thank you. Living is what I am hoping for. Life is beautiful and if it's short, it's short. But my goal is my son's graduation and I don't want to miss that.

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  7. You need to sit down and make your decision on what is best for you. If you feel rushed, maybe you should call the assistant and ask questions, also talk to your family. Then make your decision based on what you want and not what anyone else thinks you should do. Whatever your decision, have no regrets. Big hugs and good luck.

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    1. I will do all of that. I know that my oncologist will help me, so I'll start with my Wednesday appointment and ask him some things. He's not a radiologist but he should be able to help me know what to think about. Then I'll call the radiation oncologist and try and get another appointment.

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  8. Yikes.

    I'm going to refer you to the big cosmic answerer of all questions: your gut. Go with your gut.

    If you need a second opinion, I have, new in their boxes, two magic-8 balls. I will end you one if you like.

    Of coure, Magic-8 balls have limited usefulness. For instance, you cannot use them to pick a sandwich at Subway. You will still have to go with your gut on that one.

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    1. Funny, ever since I got mets, there are 2 things I never do anymore: look at Magic 8 balls or read Fortune cookies. :)

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    2. Then, sistah, you should go with your gut. If you feel like it's happening too fast, then slow it down. If you feel like this is a door of opportunity, open it. Your gut has served you well. You have the best instincts of anyone I know.

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  9. Hey, tough choices, I am sorry. Sit down with that handsome husband of yours and ask him what he thinks. Let him be a part of this. and then listen to the universe because it will tell you the answer.

    Now that I have gotten older, I never do the third date....I usually know enough after coffee. Trust your gut.

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    1. Thanks! Yes, my husband will definitely be in on all decisions. I've asked him to write his questions down too. Maybe he can go to another appointment with me but at least I'll know what he is curious about. As a numbers guy, they will be very different than mine, I'm sure.

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  10. I don't envy you or the choice you have to make. The most I can do for you is tell you I am hear if you need to scream or cry or need a laugh. Whatever choice you make will be the one you need to make. Positive thoughts coming your way Ann

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  11. When I was trying to decide about cyberknife to my spine, I asked my medical oncologist to speak with or email with the radiation oncologist. Because she would have a better idea than I what likely would happen if I didn't have the cyberknife, I thought it would be helpful to get her opinion regarding the cyberknife after she found out from the radiation oncologist why he recommended it. Her opinion helped me decide to do the procedure, and it was (knock wood) quite successful. It might be helpful for you to ask your medical oncologist to speak with the radiation oncologist and then maybe he (the medical oncologist) can advise you which path likely would help you make it to your son's graduation. Another appointment (or a telephone conference) with the radiation oncologist also seems in order. Good luck!

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  12. you are beautiful.

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  13. Such a tough call.

    You are so very strong. I'm not sure that, if I were in your shoes (certainly not heels in my case), I would have even continued on with chemo after chemo but may have just said "now is the time to stop." Kudos to you for being so strong and determined.

    I know, I think, I hope that you won't take this personally but for me it would come down to quality of life. My questions would be... do I want my husband and son to see me in this state - tired, sick etc. for days, weeks, months on end, or would it be better to just "drift off" and let them move on? That being said, you may have more good days then we see posted on FB or the blog and thus it's a no brainer to keep fighting.

    As for the medical thing... doesn't the liver rejuvenate? So even though you've had the resection didn't it grow back... that is what I always heard (based on my friend with pancreatic cancer and they took a lobe). Is it different with BC mets?

    I understand the risk with the tumor so close to the portal vein... risky to say the least...

    BUT... if this can get rid of that damn tumor and you can be chemo free and make it to your boy's graduation and maybe,just maybe,beyond *and* feel good while doing it...

    I think of you and pray for you daily. I'm sure you will make the best decision for you and your family and will cyberly support you in that decision.

    I'm in awe of your strength and courage and not only the 'can do' but 'will do' attitude.

    I'm hoping that you will be the one that "survives" BC mets and shows the medical community how to get it done. If anyone is going to hang in there and do it it will be you.

    Hugs.

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  14. I feel stupid saying that "I had breast cancer too", even though I did, because mine, at least so far, was early stage and hasn't recurred. I almost said yet, there's always the possibility of yet, but so far so good. But as someone who has seen the kiddie ride version of your journey, I feel like I understand and identify with some of your challenges more than I would have otherwise. I found that my sense of humor was a powerful tool in my recovery, and in your posts I see you wield that tool masterfully. Your writing is open, engaging, oh-so-honest, and of course, funny, and I appreciate your posts whenever I come across them. I hope you enjoy the process of writing as much as we enjoy reading them, and that your health holds up for just as long as possible. Best wishes to you!

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    1. Thank you for the nice words. I do enjoy writing and I think it helps me reframe this experience in a more positive way, and helps me corral my flying ADHD thoughts.

      Do me a favor: Take those word "yet" and "so far" and write them down on a piece of paper, then ceremoniously take it somewhere and burn it.

      There is no "yet." There is only now. Now you are cancer-free. You HAD cancer, they got it all, you are disease free, the end. Yes, it can come back but it is not likely to and so why put any energy there at all? Place yourself firmly in the good side of the percentages, and don't invite negativity into your life with words like "yet" or staying in the present tense when discussing cancer.

      Now, I don't believe we can control what happens to us with our minds but I do think it takes away from today when we spend too much time with tomorrow.

      I know that fear is hard to control but it seems online we hear all the horror stories and none of the good ones. People who have put cancer behind them are not posting on forums, blogging, whatever. They are living their lives. I met a woman who was Stage III - 30 years ago. She's more normal than our world today makes us believe. A friend of mine just celebrated her ten year mark.

      *hugs* to you and enjoy that second chance you have. Do what I never got to do - say good-bye to cancer. Shut that door, bolt it, lock it, and don't let that black light creep under with words like "so far" and "yet."

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    2. Ann, such wise words. Thank you for sharing your hard-won perspective. Five years after diagnosis and treatment, I still need to be reminded.

      Praying for you and your family. And for the best graduation celebration ever.

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    3. Ann, thank you for those words. I'm coming up on the one year anniversary of my prophylactic bilateral mastectomy (1 week away) and the one year anniversary of finding out that I HAD breast cancer (2 weeks away). I don't consciously spend energy worrying that it will progress or come back, but I do spend unconscious energy doing just that. I'm going to shut the door and say good-bye to cancer, I'm going to keep the promise to live each day to its fullest.

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  15. '... being so close to the portal vein...' the danger in that is not only the risk of the procedure, but also the growth of the tumor by itself, I think?

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  16. I will pray that your questions are answered. The question is easy to pose. You want to make it till graduation. Which option gives you the best chance. Then go all in with the goal in sight and kick it in the Sss! Hugs.

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  17. Agree with elsewhere's point above...seems like the location issue weighs as much for the procedure as against it since the danger of the tumor growing to block the vein is at least as great as if it gets damaged by rads. Of course that assumes the tumor is a fast-growing b@stard. Can they tell by comparing previous scans how fast it's growing?

    Horrendously difficult choice, for sure. Also agree with another poster's suggestion that going with your gut might be the best path!!

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  18. Wishing you luck with new radiation or whatever you chose.

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  19. Dear Ann, important decisions like this often need the benefit of caffeine. You need that coffee date. Without answers to the questions you have asked, you can't be expected to agree to this procedure. I was so happy to hear you had this option. I have so many liver mets they've never offered me radiation or ablation on my liver. If only your case weren't so complex.

    Thank you for sharing your thought process with others who haven't yet realized what they need to ask their doctors. As always, you are in my prayers.

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  20. Ann, you have probably found what little there is, but if not, here are a few I came up with for SBRT and breast cancer and liver mets articles:

    http://www.ncbi.nlm.nih.gov/pubmed/18719992

    http://jco.ascopubs.org/content/27/10/1572.short

    http://link.springer.com/article/10.1007/s10549-008-0157-4

    Of course, you may have already seen these, or find them useless, but I am one of those hopeless people who knows she can't fix it and still tries :)

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  21. It is ironic that everytime i read your blog, i get happy and sad at the same time. i cant believe that someone going through your situation can be so graceful. keep up the great work Ann.
    always praying for you.
    Chuck

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  22. Ann, Can you go to the tumor board meeting?

    Nancy

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  23. Amm, you got me. im soo sorry for you. you cant beleive what a strange and far stetes people know you. you make me a little diffrent. thank you.

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  24. Dear Ann, you are so strong, and then, you let things get to you. The heck with "try to get another appointment." He said, if you have questions, here's my assistant.
    A couple of hours grilling said assistant is definitely appropriate. Explain that they were several steps ahead of you, and that you are not willing to commit.
    Talk about how terrifying it was to be so horribly ill after the liver resection, and that you are not going into something scary again on a wing and a prayer.

    And, know that there are so many of us out there who are holding you in our hearts, daily, so that you may see your son's graduation.

    I have loved you since the days of Clementine, and want to read your blog for a long time.

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    1. I hope to write the blog for a long time (and I hope Clementine has retired by now!) I have spoken to doctors and my questions are answered and will expand more later but SBRT, here I come.

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  25. Dear Ann,
    I lost a close friend last week to breast cancer that had spread to her liver and lungs. I was so relieved to see your decision today to move forward with SBRT. Your entry on anger really resonated with me. My girlfriend, who was 47, was diagnosed a little over 2 years ago. She did not tell anyone of her diagnosis, not even her family. She sought no conventional treatment that I am aware--only switching to a raw food diet, homeopathic medicine, meditation and spiritual practice. In the midst of my grieving, I am just so pissed off that she wasted her beautiful life. Then again, she lived her life right up to the very end. Sigh.... I will never, ever understand it. I hope to come to peace with her decision at some point. Right now, it is too painful. Thank you for your blog and for sharing your experiences, learning, heartache and hope. I applaud you for throwing everything in your arsenal at this damned disease.

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    1. I also know somebody who went the alternative route. It was particularly awful because she was early stage but just did alternative treatments; something to do with wrapping the body to draw bad cells out. Of course, the cancer took over and she died badly and needlessly, considering her odds. Her family was very angry that she wouldn't do anything.

      You live your life to the very end, no matter what. I'm trying to get across how very much I appreciate and am living my life, although there are downtimes, even through treatment. Even the downtimes are life and if I'm not skiing, I'm still enjoying a book or the company of friends or the sounds of birds.

      I never contemplated anything like that but I do want my family to know I fought to be with them. And, as it turns out, SBRT will probably allow that rather than taking time away. Another post on that coming.

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  26. How awful for that poor woman. I don't think my friend suffered so much; she was fortunate in that respect. None of us know what kind of breast cancer she was diagnosed with or what stage it was. I think she thought she had beat it because her "doctor" told her it had shrunk. She went in for disk surgery May 1 and that's when she found it that she had mets--everywhere. She did not last long after that, which I guess is a blessing. Perhaps she did not have as much to fight for, since she lost her husband 10 years ago and had no children. But there were still plenty of loved ones left behind, devastated by her passing.
    I was so concerned about you after your experience with Gemzar. I was holding my breath waiting for you to get HDM1 and now this chance with SBRT sounds very promising indeed. It sounds like it will get you to your goals and more. In the meantime, I admire so much your appreciation of your precious life and how your are living it in the moment. I will be following you every step.

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  27. Glad you made the decision and are moving ahead. I'm sure it was a very difficult one. Sounds very promising, praying that this is the magic bullet for you. Roz

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  28. Ann,
    Sending healing thoughts your way. You're an inspiration to all of us battling this yucky disease.
    Heather

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  29. Ann,
    In my prayers. I thought I was in the clear, just take my yucky little pill for five years, after a year of treatment (chemo, mastectomy, radiation), when blood markers were "off" at the first 3 month appointment. Seemed like all the testing took forever, then they went into overdrive getting me back in radiation, all at the same time my first grandbaby was due. Sometimes you just have trust that God is ultimately in control because even the doctors have no promises. I can relate to so much in your blog. May it go well with you friend.

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