Latest Update

derMaus
derMaus Member Posts: 558 Member

Hello my friends! A lot has been going on so I wanted to post a quick update. I've been having bad lower back pain for the last month or so. I thought it was my usual sciatica. I was wrong. This week I saw my radiation onc about CyberKnife for the new mets, but he said no. The mass is too large (now 14 cm) to be Knifed AND that it's pressing on my nerves, thus the pain. WTF. I've never had any direct pain from my cancer but, boy, now I've met it and it's NOT fun. I have opids but they aren't all I was led to believe from the news reports. That's the bad news. The good news - yes, there is some - is that the tumor is down in the pelvic girdle and completely contained. Contrary to previous opinion, the retroperitoneal mets were all wiped out by CyberKnife, not even a spot left. And, the new mets are moving downwards rather up and out which, at least, keeps me in the 'locoregional recurrence' category with a slightly better prognosis.

Dr. CyberKnife wants surgery ASAP to remove the problem. My regular oncologist concurrs. I have a consult Tuesday with the doc who did the original hysterectomy. I didn't like her but she's already been in there once and knows the terrain. Per my oncologist, if this mass can be removed surgically - which seems quite likely - I could reach the ever-elusive NED status. I probably sound crazy to be excited about MORE surgery, but the possibility of just cutting this crap out of me is very, very appealing (not to mention getting rid of the pain...). I'll post next week after my surgeon's appointment but wanted to let you know my sorta, kinda, squint-sideways-and-you-might-see-it good news. Happy Friday! B

Comments

  • MugsBugs
    MugsBugs Member Posts: 111 Member
    Praying this leads to NED

    derMaus, you have been through it!  Praying that this surgery will finally get rid of the nasty beast forever!

  • SF73
    SF73 Member Posts: 317 Member
    Boy oh boy!

    "Per my oncologist, if this mass can be removed surgically - which seems quite likely - I could reach the ever-elusive NED status."   That put a smile on my face.  So sorry that you are experiencing pain. I am glad your surgeon wants to move quickly. Looking forward to getting your good news next week.

  • CheeseQueen57
    CheeseQueen57 Member Posts: 933 Member
    Praying for good news

    Praying for good news on Tuesday. Tumor be gone!  

  • barnyardgal
    barnyardgal Member Posts: 272
    I'm sorry you have pain, but

    I'm sorry you have pain, but great news that they could remove it all. 

  • oldbeauty
    oldbeauty Member Posts: 325 Member
    I'd take surgery over chemo any day!

    So sorry you are in pain.  Have they tried a fentynal (sp?) patch on you? That was the most effective pain relief I got overseas when my recurrence tumor was pressing on my ilio-psoas nerve and causing brutal pain before radiation shrank the tumor.  O/w, very relieved to see that your docs believe they can get the bugger all out.  You'll be dancing with NED for Independence Day!  Best wishes, Oldbeauty

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,113 Member
    der Maus, if the surgery will

    der Maus, if the surgery will alleviate the pain then I don't think it is crazy to want it.  I pray it will make you pain and cancer free.  

  • Donna Faye
    Donna Faye Member Posts: 427 Member
    I'm with you!!!

    I agree that surgery beats chemo and rads and you have every right to be excited that this will be the correct move!!! I am pulling for you and know you can get that NED.

    Hugs, thoughts and fingers crossed!!!!!!!

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,811 Member
    Mr. NED is on the way! So

    Mr. NED is on the way! So glad to hear that surgery is the best possibility for this. I think that is great news with no squinting required!  

    Take care B, and I hope you get scheduled asap.

    Love and Hugs,

    Cindi

  • Kaleena
    Kaleena Member Posts: 2,083 Member
    Praying for quick relief

    Oh DerMaus

    so sorry to hear you are in pain.   That’s not fun at all!   I’m with you with having the surgery to remove that.  That should relieve your pai and put you back into NED.    Nobody wants more surgery but if it gets it out and stops the pain then go for it!   Sending you positive thoughts and prayers for a speedy recovery and NED status!

    hugs!!!!

    Kathy

  • MAbound
    MAbound Member Posts: 1,164 Member
    Ditto!

    I fully agree that surgery that will relieve your pain and set you up with NED is definitely worth doing. So sorry that you are having to go through so darn much to get there, though! Crossing my fingers, eyes, and toes for you! Hope is a great spirit lifter, isn't it?

  • Armywife
    Armywife Member Posts: 449 Member
    The good

    Praying that the good outweighs the bad here - very sorry for your pain, but thrilled to know the cyberknife works and that surgery can knock out the rest.  Look forward to hearing more when you know more!  (And I didn't like my surgeon either at first  - honestly because I didn't think she liked me, but we grew on each other!)

     

  • derMaus
    derMaus Member Posts: 558 Member
    oldbeauty said:

    I'd take surgery over chemo any day!

    So sorry you are in pain.  Have they tried a fentynal (sp?) patch on you? That was the most effective pain relief I got overseas when my recurrence tumor was pressing on my ilio-psoas nerve and causing brutal pain before radiation shrank the tumor.  O/w, very relieved to see that your docs believe they can get the bugger all out.  You'll be dancing with NED for Independence Day!  Best wishes, Oldbeauty

    I hadn't though about asking

    I hadn't though about asking for a patch, good idea! Thank you.

  • Abbycat2
    Abbycat2 Member Posts: 644 Member
    The good news is very good!

    derMaus, pain is not good, but surgery sounds like a great choice. I look forward to hearing how the surgery went for you. Your have such a good chance of seeing wonderful results. NED sounds good to me! Keep us updated, please.

    Warm Wishes,

    Cathy

  • Harmony09
    Harmony09 Member Posts: 79
    Oh DerMaus! That IS good news

    Oh DerMaus! That IS good news....even without squinting sideways! ;) Haaaaahaaaa! I'm so sorry you're having to endure the pain, but it is a sign that says something is wrong. I hope you're feeling better today, and I hope you're a good candidate for the surgery...SOON!

    Thank you for continuing to share your thoughts and journey with us. I'm going to be praying for you. Please keep us updated.

    Sincerely,

    Stacey