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Abrub - update on recurrence

abrub's picture
abrub
Posts: 2132
Joined: Mar 2010

After surgery 5 weeks ago for my appendix cancer recurrence (after 9 years of NED), they determined that in addition to the defined tumor, there remain scattered malignant cells outside of the tumor margins.  With mine being a slow-growing cancer (and the new tumor identical in morphology and pathology to the original tumors of 2007) we don't really know if these rogue cells will ever do anything, or how long it might be until a recurrence.

We also don't know if the 2 days of Intraperitoneal Chemo I had after my recent surgery affected those extra cells.

My dr quickly called in all resources, consulting with his colleagues within the colo-rectal service, as well as calling in oncologic specialists in other areas (Interventional Radiology for possible ablation therapy, and Radiation oncology to consider brachytherapy.)  I just spent the week in appointments at Sloan Kettering meeting with many drs and having numerous procedures to see how we can best move forward.

At this point, we know that ablation therapy is not an option, because you need macroscopic cancer so that the therapy has a specific target.  There is nothing visible in my scans.  Brachytherapy via a vaginal probe remains an option, but my primary oncologist is concerned that if the radiation travels too deeply into the tissue (we're talking by a couple of millimeters here) that it could damage my bladder or ureter, which are physically lying against the affected tissue. He fears that he'd have to do surgical repairs.  Plus he noted that vaginal mets have their own way of moving about.  His other concern is that if I have the therapy and have a recurrence down the road regardless, then the surgery becomes more complex due to dealing with an irradiated vagina, which does complicate surgery.  And despite what he'd told me earlier, yes he would do surgery on me again, even with the complexity.

Barring some new information (can they really control the depth of brachytherapy?) our current plan is for me to have regular pelvic MRIs (every 6 months or so) and quarterly physical exams, under the assumption that a tumor should be able to be felt.

Thus, once I recover from this surgery (and yes, I'm still quite sore and limited in activity) I'll resume my normal life, and go back to living under the assumption that I'm cancer-free (while going in for those required checkups.)  So while I didn't get the outcome I hoped for, what I did get is still very positive.

Overall, I'm feeling quite positive.

Alice

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Good for you. You're kind of in the same boat as me. Slow growing mets that may or may not be an issue in the future. I also choose to just enjoy life and hope for the best but it took me some time to get to that point mentally. Now that I'm there I'm happy and hoping after the next CT in Dec that I'm not going to be told anything that will shake my positive outlook. Its important to enjoy life as best we can and try not to become pessimistic. The outcome will not change but at least we have better quality of life that way.

Jan

John23's picture
John23
Posts: 2140
Joined: Jan 2007

You are a very positive inspiration for us all, Alice!

Fantastic attitude !!!

Best hopes,

John

 

traci43's picture
traci43
Posts: 775
Joined: Jul 2007

Keep on truckin', or in your case canoeing.  lol  Wishing you a continued recovery and very, very, very slow growth.  Traci

tanstaafl's picture
tanstaafl
Posts: 1292
Joined: Oct 2010

We assess the effectiveness of surgerical removal by biomarkers, before and after surgery then serially.   CEA, CA199, neutrophil:lymphocyte ratio, platelet:lymphocyte ratio, LDH amongst the more common labs.    Then mostly use the less known off label and natural solutions for targeted and immune suppression, picking off lesions and sites one by one over time, along with some oral chemo.  

The natural stuff helps suppress both cancer (biomarkers) and chemo side effects nicely while maintaining WBC, RBC, etc.  I think a key is to start early with a smaller amount of residual cancer before they become overwhelming, and before regullar tx, RT and heavy chemo, damage the WBC and immune values too much.

abrub's picture
abrub
Posts: 2132
Joined: Mar 2010

My cancer has never been reflected in any of a large group of markers that they check.  My counts have always been normal, so they are not useful in tracking my progress of disease.  However, my drs will continue to track them just in case.

NewHere's picture
NewHere
Posts: 1205
Joined: Feb 2015

Sorry I missed this for some reason. Cannot believe it has been five weeks since your surgery, seems like yesterday we were trying to see if we could meet up post-op at MSK ;)   Interesting information on ablation, was kicking that around as something in case the other items I have are also mets.  Thoughts with you and fingers crossed.  

abrub's picture
abrub
Posts: 2132
Joined: Mar 2010

I posted this originally 2 weeks ago.  Tomorrow is 7 weeks.  Newer news is that my gyn checked me last week and was able to use a full sized speculum.  (The tiny one the rad onc used on me a few days prior was painful, and I thought I'd need to pursue vaginal dilation.)  In another 8 days (but who's counting!) another important part of my life may resume!

NewHere's picture
NewHere
Posts: 1205
Joined: Feb 2015

:) 

Trubrit's picture
Trubrit
Posts: 5221
Joined: Jan 2013

WOO HOO!  

So glad that you are so far out and getting better by the day. 

Enjoy your future, espeically in eight days. 

SUE

beaumontdave's picture
beaumontdave
Posts: 1069
Joined: Aug 2013

Hang in there Alice, the waiting on tests and scans is dramatic and worrying, but it's sounds like their as on top of it as they can be. It's a microscopic game of whack-a-mole a doctor once told me, I found the silly analogy somehow refreshing........................Dave

Annabelle41415's picture
Annabelle41415
Posts: 6549
Joined: Feb 2009

It's been a while since I've been on so it's sorry to see that you have had a recurrence.  You sound like you are going to take it one day at a time and move on.  You've always been so positive and I'm wishing that all goes well moving forward.  It's good to see that hasn't changed you.

Kim

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