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Waiting on 1st PET scan ODD Situation

lizgino's picture
lizgino
Posts: 7
Joined: May 2012

Hi. New to the board, so wish I found it sooner! I was diagnosed with Anal Cancer Apr 13, 2011, one day before my 50th birthday! I was also diagnosed with a severe abdominal infection and 2 major fistulas (due to the infection from that dang mesh). Anyway I did the myomiticin and 5-FU and radiation treatments for 6 weeks. 2 weeks after my diagnoses and just before my treatments I had a temporary diverting colostomy.

The thing is they could never really stage my cancer. They felt it was stage 3 or earlier because when they did the CAT scan I had enlarged lymph nodes in my groin, but they could not determine whether it was cancer or if it was the infection, so they just treated it like it was cancer (a couple of nodes had pinpoint radiation due to the size). IF they did a PET scan at the beginning they said my whole abdominal area would light up because of the infection, then the inflammation from surgeries..etc, so MY FIRST PET SCAN WAS TODAY!!!!

My surgeon repaired the fistulas in November 2011 and took localize biopsies, and THANK GOD NED!!! I prayed and believed that my body would heal it self well enough to attempt a colostomy reversal, and it did! I had the reversal Feb 28, 2012. I'm no where near the same as before CA, but let me tell you, it beats having that bag on your belly!

I am dealing with a lot of side effects from chemo/radiation as well. Has anyone every heard of chemo induced Rheumatoid Arthritis? My RF labs were high as is my sed rate and CPK. I have an appointment with a rheumotologist in July. I'm still dealing with fatigue as well. The joint pain is the worst in my hands, but is also in my wrists, shoulders and slightly in my ankles. My bone density scan revealed Osteopenia, so now taking Calcium and Vit D.

Boy it has been just as crazy as it was DURING treatments, maybe even more now.

My body is so much different then it was 1-2 years ago. I am trying to accept it and do the best I can with what I have. On a positive note, I did my first ever 5 K a week ago!

Lorikat's picture
Lorikat
Posts: 557
Joined: Jul 2011

Yep! Things are often really different after treatment for cancer. And sides effects can be SOOO different person to person. With me it's my hips and upper thighs often hurt, some potty problems, easy irritation 'down there'. BUT.... This is my new life and I WILL live it to the fullest! Happy, healthy future for you.... Lorie

mp327's picture
mp327
Posts: 2879
Joined: Jan 2010

From one runner to another, I welcome you to our group! You have a wonderful attitude! As for the joint pain, it is common among us who have had this treatment. I have found that continuing to be active and moving a lot helps. If I sit for too long, I feel like I've been beaten up! My DEXA scans have revealed that I have osteopenia too. I am not taking anything for it, just doing lots of weight bearing exercise, including weight training. I take calcium and magnesium supplements, along with vitamin D, both in supplement form and from the sun. Congrats on completing your first 5K! May that be the first of many more to come!

lizgino's picture
lizgino
Posts: 7
Joined: May 2012

Thanks so much for the warm welcome! I'm not up to running yet, but definitely a fast pace walk. I did the 5 k in just under 1 hour! I'm not sure how this Calcium and Vit D regime is going to work, as Lorikat mentioned, I too am having some intestinal issues and my peri area is trying to adjust to being used again....the Cal & Vit D are causing upset stomach, which in turn causes upset intestines...well sure you all know.

THE GREAT NEWS IS THIS....THE ONCOLOGIST CALLED THIS MORNING....NED..NED...NED

There is a small area, where the original tumor was that shows minor activity but they think it is due to surgeries...we will just keep an eye on it, but nothing in my lymph nodes, nothing in my liver or lungs...the places he was worried about...PRAISE GOD!!

AZANNIE
Posts: 375
Joined: Mar 2011

Congrats on being NED! I hope NED continues to be your friend! Welcome to this site which as you've found out contains a wealth of information and support!

Ann

mp327's picture
mp327
Posts: 2879
Joined: Jan 2010

I'm so glad you have met NED--he's a great guy! :) In my case, I have had several post-treatment PET scans and they always show a little activity in the tumor area, which is always identified as inflammation. It is, after all, an area that gets a lot of use and is bound to have some irritation from time to time. I'm very happy for you and I hope you always get such great news!

Keep up with the walking--that's awesome!

Tybtym
Posts: 41
Joined: Feb 2012

I just received my 1st report on my pet scan my doctor said no activity in any area except the anal area and I have to have biopsy taken in that area to make sure cancer is gone, did you have biopsies done he says for me not to worry this is just to make sure I am cancer free, but I am a nervous nelly about it.

mp327's picture
mp327
Posts: 2879
Joined: Jan 2010

I hope it gives you some comfort to know that my first post-treatment PET scan showed activity in my anal area too. It was determined to be inflammation, most likely from the radiation. I've had several PET scans since then and they always seemed to show some inflammation at the anal area. I have never undergone biopsy because of it, but many people do. I'm sure you'll do fine and I hope that all will come back showing no cancer! When are you scheduled for the biopsy? Please let us know. You'll be in my prayers.

Tybtym
Posts: 41
Joined: Feb 2012

Thank you for the reply my biopsy is scheduled for July 12th, I keep you guys posted! I do feel better now .

mp327's picture
mp327
Posts: 2879
Joined: Jan 2010

Thanks for letting us know the date of your procedure. I'll keep you in my prayers!

nonichol's picture
nonichol
Posts: 114
Joined: Jul 2010

Welcome to the board. Congrats on NED.

eihtak
Posts: 827
Joined: Oct 2011

Welcome to our crazy family...and congrats on moving forward in your recovery. I am about 14months post treatment for Stage3B. At my 1yr Pet scan was diagnosed with Breast Cancer so right now recovering from that treatment as well. I too was one of the lucky ones to have a colostomy and looks now like it will be for keeps, kind of still waiting for some tests though so still a bit of hope and prayer. I had CT scans of chest and pelvis yesterday but because of the holiday will not see doc till the 6th....praying for a good report! As far as aches, pain, and inflamation, I think it goes with the territory, but sure beats the alternative. I can't wait till I'm up for a 5K, I've done some shorter walks so will try soon. Its always encouraging to hear stories of people doing well....please keep in touch, we will pray for continued good news on your scans.

mp327's picture
mp327
Posts: 2879
Joined: Jan 2010

I just wanted to wish you all good results on your scan and also encourage you to keep up the walking program! I'm sure you can work up to doing that 5K!

sandysp's picture
sandysp
Posts: 771
Joined: May 2011

I am so glad you found us. Congratulations on surviving this thing and getting on with healthy activities like the 5K. We encourage each other to get moving.

cap630
Posts: 150
Joined: Jul 2011

First congratulations on NED! You have a great attitude. I too have joint pain and am just trying to stay as active as possible. Water aerobic has been a saving grace for my hip. ~Carol

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