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Yup non surgical....

Twinzma
Posts: 133
Joined: Jan 2018

Well as much as I hate to admiit it his oncologist and colorectal surgeon was right.....Ugh, So off to a radiologist oncologist to see if they can do the y90 spheres or tace. I don't see tace working, all those tumors his liver would be swiss cheese.... I am going back to packing, we are leaving for Mexico in the morning. Just wanted to give a quick update and say once again, thank you all you are the best! When we get back we also are going to Moffit in Tampa, then to a surgeon in Ft. Meyers.... 

 

 

JanJan63's picture
JanJan63
Posts: 2077
Joined: Sep 2014

Oh boy... Well, have a fabulous time in Mexico!

Hugs, Jan

Twinzma
Posts: 133
Joined: Jan 2018

He doesn't know it yet but his best friend from elementary school is going too. Thought he could use the surprise, 50 years of friendship, it should lift his spirits! 

 

lhduffer
Posts: 52
Joined: Oct 2015

I went to Moffitt and had an amazing radiation oncologist and surgeon for my rectal cancer. 

Hope you have a wonderful trip!

FLSunshine52
Posts: 1
Joined: Feb 2019

Hi-  All of my info was wiped out with the recent crash.  But long story short, My Mom has stage IV, inoperable rectal cancer.  The tumor is in a complicated location and more can go wrong than right with surgery and she nor her doctors are willing to chance that.  She's here with me in Lutz for a while.  She's currently  being treated at Florida Cancer Specialists, FOLFIRI w/ Avastin.  Although she's in the middle of this round, her prognosis isn't that good.  So I reached out to Moffitt last week about being seen there.  Do you mind sharing who you saw over there?  Even though they advised of the high co-pays compared to FCS, we feel it's worth it to do everything we can to try and get her better.  Thanks for whatever you're willing to share about your experience at Moffitt.

lhduffer
Posts: 52
Joined: Oct 2015

My original oncologist is no longer there.  However, my radiation oncologist was Dr. Sarah Hoffe who I personally thought was amazing.  She was honest yet hopeful.  My surgeon was Dr. Julian Sanchez and I also think he is wonderful.  He was very blunt from the beginning that if I did not respond to the chemo and chemo/radiation that I would not be eligible for surgery and I would be maintenance only.  Luckily I did respond and was able to have the surgery.  My cancer was very low and it was originally thought that I would have a permanent colostomy but was marked for both permanent and temporary for surgery.  I woke up to a temporary and have since had my reversal.  I am still doing my follow up with Dr. Sanchez.  The fact that my "team" of doctors worked very closely on my case and that everything was reviewed by the tumor board was a plus in my opinion.

Moffitt can be a bit overwhelming due to the sheer volume of patients.  However, I believe they are an excellent facility with excellent research.  From my experience, they were very honest with me and Dr. Hoffe even offered to give me a referral to MD Anderson when I was hoping to investigate proton therapy.

While everyone's experience is different, in my opinion it is certainly worth getting a second opinion at Moffitt and seeing if there is anything different they can do.  I am sending prayers for you and your mother and that they are able to help.

SandiaBuddy's picture
SandiaBuddy
Posts: 531
Joined: Apr 2017

Enjoy the time away, the surprise guest and avoiding the storm.  I hope you have a great time!

Annabelle41415's picture
Annabelle41415
Posts: 5724
Joined: Feb 2009

Hope you both have a wonderful time and wishing you the best vacation.  Time to get away from all of this.  Enjoy.

Kim

abita's picture
abita
Posts: 428
Joined: Dec 2017

Why won't the liver regenerate to fill in the spaces? Does the procedure destroy it? My situation is very different as was chemo so the gaps didn't kill the surrounding liver tissues, but my liver regenerated and filled in where the tumors were.

KarenMG's picture
KarenMG
Posts: 68
Joined: Jun 2017

That sounds like a lot to deal with but I know you can handle it! Just keep perservering and I hope you get the best results possible. I feel like my liver is getting to look like swiss cheese! What a sight that must be.

Keep in touch and let us know what happens.

Much love,

Karen

Butt
Posts: 81
Joined: May 2018

Moffitt was a waist of time. Mark Bloomston is the man in Fort Myers. Butt.

lhduffer
Posts: 52
Joined: Oct 2015

I am sorry that your experience at Moffitt wasn't a good one and that in your opinion it is a waste of time.  That's the great thing about opinions, we each have one and they are correct for our situation.  As I mentioned we are each very different as is our DNA and our disease.  

For me personally (stage 4 rectal), Moffitt was great. I felt blessed to have a good facility within an hour of my home.  I am going in for my scan next month, hoping to get a clear one and be 3 years NED from my surgery in 2016.  I am glad that you have found a doctor that you are happy with and am sending hope and prayers that they can do for you what others could not.

Butt
Posts: 81
Joined: May 2018

Do you have a name of a good oncologist there? Butt.

lhduffer
Posts: 52
Joined: Oct 2015

Unfortunately, my original oncologist is no longer there.  My surgeon is currently doing all of my follow up testing and appointments.

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