CyberKnife?

Bittersweetly
Bittersweetly Member Posts: 14
in Gynecological Cancers (other than ovarian and uterine) #1
Hi all,
I haven't been here in a while.
Brief summary of my situation: I started with stage 4b vaginal adenocarcinoma in January. The two kinds of radiation completely eliminated the tumor and all the local mets from my pelvis. A few months later however small nodules were found in my lungs. Now in October I just finished my second round of treatment, Carbotaxol, for the nodules. I was devastated to find out that the chemo did NOTHING and in fact there are more nodules, and the earlier ones have gotten bigger (though thankfully they're all still pretty small.) I didn't realize until now what a guessing game it all is because of the lack of data specific to vaginal adenocarcinoma...
So my medical oncologist (who I love) suggested I start looking around for clinical trials. She will be doing the same, and doing some other tests on the tissue they got from my original biopsy. I am currently asymptomatic.
Anyway looking for clinical trials I have found NOTHING relevant to my particular disease. Since I responded so well to radiation, and since chemo for my condition is such a crap shoot, I am wondering about CyberKnife. Does anyone know or have experience of this? All I can find is the company itself talking about how fantastic it is...it does sound good...

Comments

  • ccfighter
    ccfighter Member Posts: 476 Member
    #2
    How many nodules? Is
    How many nodules? Is surgery not an option? Your right that there is not nearly enough research for late stage HPV related gyn cancers. I had cervical adeno and have a new lung nodule. They will cut it out if it grows. Search other forums on this site. The colorectal has had a lot of patients who have undergone cyber knife. Different cancer but when it comes to mets....mets are mets. Cut em out if you can. Poison or burn them otherwise. Send em running. Good luck and keep us posted.
  • Bittersweetly
    Bittersweetly Member Posts: 14
    #3
    ccfighter said:

    How many nodules? Is
    How many nodules? Is surgery not an option? Your right that there is not nearly enough research for late stage HPV related gyn cancers. I had cervical adeno and have a new lung nodule. They will cut it out if it grows. Search other forums on this site. The colorectal has had a lot of patients who have undergone cyber knife. Different cancer but when it comes to mets....mets are mets. Cut em out if you can. Poison or burn them otherwise. Send em running. Good luck and keep us posted.

    6-8 nodules
    Hi ccfighter, thanks for replying.
    Yes it's funny, when I had my initial diagnosis, I was referred to a surgeon (but did not end up needing surgery.) Since then not a single mention of surgery, which I assume is because there are too many nodules? They are too small? I didn't think of surgery either...
    The largest nodule is around 2cm. Of course there may be more than 8 - could be smaller ones that are currently not detectable...I'll look in colorectal, thanks for the tip.
    x Bittersweetly
    P.S. My cancer apparently is not HPV related, which makes it even stranger!
  • ccfighter
    ccfighter Member Posts: 476 Member
    #4
    Bittersweetly said:

    6-8 nodules
    Hi ccfighter, thanks for replying.
    Yes it's funny, when I had my initial diagnosis, I was referred to a surgeon (but did not end up needing surgery.) Since then not a single mention of surgery, which I assume is because there are too many nodules? They are too small? I didn't think of surgery either...
    The largest nodule is around 2cm. Of course there may be more than 8 - could be smaller ones that are currently not detectable...I'll look in colorectal, thanks for the tip.
    x Bittersweetly
    P.S. My cancer apparently is not HPV related, which makes it even stranger!

    40% are HPV. DES is also a
    40% are HPV. DES is also a known risk factor. I'm cervical cancer and likely to be HPV related so it came to mind. Good luck kicking those lung nodules to the curb. Seems like cyber knife should be a viable option. I pray this works for you.
  • Bittersweetly
    Bittersweetly Member Posts: 14
    #5
    ccfighter said:

    40% are HPV. DES is also a
    40% are HPV. DES is also a known risk factor. I'm cervical cancer and likely to be HPV related so it came to mind. Good luck kicking those lung nodules to the curb. Seems like cyber knife should be a viable option. I pray this works for you.

    Thanks!
    Thanks ccfighter. I thought it was like 70% HPV but I guess not. I have wondered about DES for some time now. I'm trying to get ahold of my mom's medical records from around 1963...(not so easy 'cuz my parents were in Germany, dad was a civilian employee of the US Army...)
    Anyway I found a lot of stuff about CyberKnife on inspire.com. It looks amazingly positive, and my doctor is the one who mentioned it (as part of a string of possible options).
    Do you ever notice how FAST oncologists talk? The only reason I knew she mentioned CyberKnife was because my friend recorded the conversation on her iPhone. Anyway! I'm going to talk to my onc about it...x
  • Bittersweetly
    Bittersweetly Member Posts: 14
    #6
    The 411 on CyberKnife
    I thought I would post a followup to this. My doctor just told me that CyberKnife isn't an option for me right now. Here is her note:

    You have too many lesions [6-8] for cyberknife to be a good option...Cyberknife or radiation might be a good option, though, if you have one or two lesions that are growing faster than the others AND causing symptoms, as the symptoms could be helped...In general terms, we think of local treatment with cyberknife or surgery, to a limited number of visible lung or liver metastasis from a cancer, to potentially allow people to liver longer if all sites of limited measurable disease can be effectively treated. If all sites cannot be treated, or new sites are developing over relatively short intervals of time, the local treatment does not seem to change how long a person lives (again, unless there is a life-threatening symptom that is being controlled).
  • ccfighter
    ccfighter Member Posts: 476 Member
    #7
    Bittersweetly said:

    The 411 on CyberKnife
    I thought I would post a followup to this. My doctor just told me that CyberKnife isn't an option for me right now. Here is her note:

    You have too many lesions [6-8] for cyberknife to be a good option...Cyberknife or radiation might be a good option, though, if you have one or two lesions that are growing faster than the others AND causing symptoms, as the symptoms could be helped...In general terms, we think of local treatment with cyberknife or surgery, to a limited number of visible lung or liver metastasis from a cancer, to potentially allow people to liver longer if all sites of limited measurable disease can be effectively treated. If all sites cannot be treated, or new sites are developing over relatively short intervals of time, the local treatment does not seem to change how long a person lives (again, unless there is a life-threatening symptom that is being controlled).

    Bittersweetly,I am sorry to
    Bittersweetly,
    I am sorry to hear this. If chemo reduces the number of lung nodules will they then consider surgery or cyber knife? Also, please get a second or third opinion. Some doctors are more aggressive in their treatment approach and are willing to remove multiple mets from the lungs. We are a statistic of one and some doctors are willing to be optimistic for you to be the exception to the rule. Perhaps you could find a thoracic surgeon who would be willing to perform wedge resections in order to remove the tumors. Good luck. Keep us posted.

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