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derMaus's picture
Posts: 561
Joined: Nov 2016

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

Posts: 111
Joined: Jan 2018

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

Posts: 309
Joined: Oct 2017

"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's picture
Posts: 936
Joined: Feb 2016

Praying for good news on Tuesday. Tumor be gone!  

Posts: 274
Joined: Oct 2017

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

Posts: 317
Joined: May 2012

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

derMaus's picture
Posts: 561
Joined: Nov 2016

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

NoTimeForCancer's picture
Posts: 2913
Joined: Mar 2013

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's picture
Donna Faye
Posts: 430
Joined: Jan 2017

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's picture
Posts: 1802
Joined: Jun 2015

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,


Kaleena's picture
Posts: 2064
Joined: Nov 2009

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!



Posts: 1153
Joined: Jun 2016

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's picture
Posts: 452
Joined: Feb 2018

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!)


Abbycat2's picture
Posts: 644
Joined: Feb 2014

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,


Harmony09's picture
Posts: 79
Joined: Aug 2017

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.



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