A little something

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  • Editgrl
    Editgrl Member Posts: 903 Member
    Heard back

    My gyn/onc did talk to both my radiologist and another on staff who does the stereotactic radiation.  Apparently, both felt that rather than do stereotactic, they want to radiate the whole area.  Not thrilled about that, and gyn/onc offered to arrange a second opinion in San Francisco where they actually do that type of radiation.  In any case, I have a consultation scheduled to hear the reasoning behind the recommendation and exactly what they think needs to be treated.  Especially in view of the fact that my gyn/onc was not totally convinced that what showed up was indeed cancer, I'm a little surprised.  And dismayed.

  • Nellasing
    Nellasing Member Posts: 528 Member
    edited October 2016 #23
    Urgh!

    So sorry to hear that there is another cross road- it's easy for them to come up with these things and then we have to sort and weigh out the options- I hope the 2nd opinion gives you more to go on.  Prayers for the BEST to come CLEAR for you   (((HUGS)))

  • Lou Ann M
    Lou Ann M Member Posts: 996 Member
    Editgrl said:

    Heard back

    My gyn/onc did talk to both my radiologist and another on staff who does the stereotactic radiation.  Apparently, both felt that rather than do stereotactic, they want to radiate the whole area.  Not thrilled about that, and gyn/onc offered to arrange a second opinion in San Francisco where they actually do that type of radiation.  In any case, I have a consultation scheduled to hear the reasoning behind the recommendation and exactly what they think needs to be treated.  Especially in view of the fact that my gyn/onc was not totally convinced that what showed up was indeed cancer, I'm a little surprised.  And dismayed.

    So sorry to hear

    Oh, sweeet lady, I hate that this is happening to you.  I hope and pray that every thing works out to the best.  The one good thing is that it was caught early.

    Hugs and prayers, Lou Ann

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,811 Member
    Sure seems like there isn't

    Sure seems like there isn't an across the board agreement once again.... I'm glad you are going to get a second opinion.

    The one thing that Anne told me (AWK) was that she never had mets in the areas that had been treated with radiation. It is something to consider when you start getting all of the feedback.

    So sorry you are having to deal with this again. Please let us know what the next steps end up being for you.

    Love and Hugs,

    Cindi

  • MAbound
    MAbound Member Posts: 1,168 Member
    Editgrl said:

    Heard back

    My gyn/onc did talk to both my radiologist and another on staff who does the stereotactic radiation.  Apparently, both felt that rather than do stereotactic, they want to radiate the whole area.  Not thrilled about that, and gyn/onc offered to arrange a second opinion in San Francisco where they actually do that type of radiation.  In any case, I have a consultation scheduled to hear the reasoning behind the recommendation and exactly what they think needs to be treated.  Especially in view of the fact that my gyn/onc was not totally convinced that what showed up was indeed cancer, I'm a little surprised.  And dismayed.

    Dismayed

    Yeah, I hear you. I start tomorrow on the pelvic radiation. What's helping me face it is that I understand the why of it between what I heard from others here, what I've read, and from the radiation oncologist who's overseeing my treatment. My gyn oncologist wanted wide field radiation, but the radiation oncologist is narrowing what gets treated using image guided 3D-CRT. He would have preferred to have used IGRT (Image Guided Radiation Therapy), but said that is extremely complicated and therefore extremely expensive and insurance companies don't cover it. The image guided 3D-CRT is a modification that pretty much does near the same thing. It molds the area targeted three-dimensionally to allow them to spare a lot more intestine, bladder, and the hip bones than the traditional wide field does. It gives me hope that I'll come through this reasonably ok, but boy, it sure was hard not to get emotional when I was going through the simulation today. Everything so far indicates I'm NED now, so I can't help but wonder if I'm doing harm when maybe I don't need to. Be sure you understand the different ways they deliver pelvic radiation because it sure helps to understand any explanations you get when you meet with the radiation oncologist. I was told that fatigue, diarrhea or constipation (depending on how I eat), and vaginal stenosis will be the main short term side effects to still expect. So sorry that you're having to face this decision yet again!

  • Editgrl
    Editgrl Member Posts: 903 Member
    edited October 2016 #27
    MAbound said:

    Dismayed

    Yeah, I hear you. I start tomorrow on the pelvic radiation. What's helping me face it is that I understand the why of it between what I heard from others here, what I've read, and from the radiation oncologist who's overseeing my treatment. My gyn oncologist wanted wide field radiation, but the radiation oncologist is narrowing what gets treated using image guided 3D-CRT. He would have preferred to have used IGRT (Image Guided Radiation Therapy), but said that is extremely complicated and therefore extremely expensive and insurance companies don't cover it. The image guided 3D-CRT is a modification that pretty much does near the same thing. It molds the area targeted three-dimensionally to allow them to spare a lot more intestine, bladder, and the hip bones than the traditional wide field does. It gives me hope that I'll come through this reasonably ok, but boy, it sure was hard not to get emotional when I was going through the simulation today. Everything so far indicates I'm NED now, so I can't help but wonder if I'm doing harm when maybe I don't need to. Be sure you understand the different ways they deliver pelvic radiation because it sure helps to understand any explanations you get when you meet with the radiation oncologist. I was told that fatigue, diarrhea or constipation (depending on how I eat), and vaginal stenosis will be the main short term side effects to still expect. So sorry that you're having to face this decision yet again!

    When I saw my gyn/onc last,

    When I saw my gyn/onc last, he also did not think wide field radiation made sense.  I am interested in seeing exactly what kind of radiation they are talking about.  When I talked to the scheduler today about the consultation, she said that even though I had been seeing Dr. Schmidt, whom I really liked, I needed to see another doctor because of the type of radiation being considered.  Dr. Schmidt does both external radiation and brachytherapy, so I'm curious.  Perhaps this doctor is a specialist in stereotactic radiation.  In any case, the first consultation is scheduled for Monday morning.  I am starting to get my questions together...  and I will certainly ask about both the image guided 3D-CRT and the IGRT.  I do know that Kaiser's radiology departments here do not offer all of the possible radiation options, and that's why my gyn/onc suggested a second opinion in S.F.

     

     

  • beccabtown
    beccabtown Member Posts: 234
    edited October 2016 #28
    Chris, I know this news was

    Chris, I know this news was not what you expected, but I'm sure your strength and positive attitude will get you through whatever comes next. Rebecca

  • janaes
    janaes Member Posts: 799 Member
    I will be praying and

    I will be praying and thinking of you as you go forward.

  • Kvdyson
    Kvdyson Member Posts: 789
    edited October 2016 #30
    So, so sorry to hear that

    So, so sorry to hear that news, Chris! As you know all too well, MMMT is incredibly aggressive so they need to use all the tools that they have at their disposal to combat it. Good news is that you still had this treatment available to you. Praying that it takes care of it and that you can get back to "normal" life again. Kim  

  • ncg007
    ncg007 Member Posts: 138 Member
    edited October 2016 #31
    Editgrl said:

    When I saw my gyn/onc last,

    When I saw my gyn/onc last, he also did not think wide field radiation made sense.  I am interested in seeing exactly what kind of radiation they are talking about.  When I talked to the scheduler today about the consultation, she said that even though I had been seeing Dr. Schmidt, whom I really liked, I needed to see another doctor because of the type of radiation being considered.  Dr. Schmidt does both external radiation and brachytherapy, so I'm curious.  Perhaps this doctor is a specialist in stereotactic radiation.  In any case, the first consultation is scheduled for Monday morning.  I am starting to get my questions together...  and I will certainly ask about both the image guided 3D-CRT and the IGRT.  I do know that Kaiser's radiology departments here do not offer all of the possible radiation options, and that's why my gyn/onc suggested a second opinion in S.F.

     

     

    Chris...

    Chris...sorry to hear this...I'll be thinking of you and I hope all goes well.   Keep up with that positive attitude!

    Nancy

  • giggs100
    giggs100 Member Posts: 91 Member
    My thought and prayers

    My thoughts and prayers are with you Chris.

    Jerri

  • DrienneB
    DrienneB Member Posts: 182
    edited October 2016 #33
    Sorry Chris

    Arghh regarding decisions like this. Does it seem off-base of me to suggest seeking another opinion from a gyn/onc (not a radiologist) regarding interpreting the PET scan results? I know we have a very aggressive cancer -- I also have MMMT -- but my doctors have not been very keen on PET scans. I have read that they show changes that are sometimes the result of chemoradiation instead of evidencing cancer activity. I know that you had bracheythearapy not pelvic radiation.

    I also know that you are very thorough and thoughtful. I am sorry you have to make another hard decision. Praying for wisdom for you and your physicians too.

    -j

  • Editgrl
    Editgrl Member Posts: 903 Member
    DrienneB said:

    Sorry Chris

    Arghh regarding decisions like this. Does it seem off-base of me to suggest seeking another opinion from a gyn/onc (not a radiologist) regarding interpreting the PET scan results? I know we have a very aggressive cancer -- I also have MMMT -- but my doctors have not been very keen on PET scans. I have read that they show changes that are sometimes the result of chemoradiation instead of evidencing cancer activity. I know that you had bracheythearapy not pelvic radiation.

    I also know that you are very thorough and thoughtful. I am sorry you have to make another hard decision. Praying for wisdom for you and your physicians too.

    -j

    Not Off-Base

    Not off-base at all.  Got the distinct impression from my gyn/onc that he was kinda surprised at the radiologists' take on things.  I'm guessing that's why he suggested a second opinion from radiologists at another facility.  I imagine that he and I will be having some additional conversations about this.  He was not convinced that what he was seeing was necessarily a recurrence.  Stay tuned...

  • Mmpeterson
    Mmpeterson Member Posts: 124
    Second opinion is a really

    Second opinion is a really good idea.  Keeping u in my prayers!!  Many hugs to u Chris for good news. Maryanne 

  • brissance
    brissance Member Posts: 192
    edited October 2016 #36
    Cover Your Ears I May Curse!!!

    Dang it Chris, I am just catching up with my reading, this is NOT NOT NOT fair.  I know you will handle and I know you will beat it.  It isn't the end of the world but dog gone it.  I know they are doing marvelous things in directed radiology.  I am glad you are holding them to their responsibilty of letting you have the information so YOU can make an informed decision.  You know we are all so very much on your side and support you dear lady.  God bless you.

  • LindyLu
    LindyLu Member Posts: 72
    edited October 2016 #37
    never easy...

    So sorry, Chris, to hear you need to go through this process.  I know you will get all your facts and questions answered before making your decision.  This cancer is THE PITS!  Sending you hugs and positive thoughts...~LL