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5 Years in - Scan and not quite what I was hoping

toddi1973's picture
toddi1973
Posts: 41
Joined: Oct 2011

Hi Fellow survivors. 

Last week was the 5 year mark. Been NED ever since the initial surgery was completed. Had CT Scan, bloodwork, scope, the works done last week. Got the results today. Not quite what I was hoping for.

CT Scan shows two spots about 2cm in size outside of the j-pouch in the peritoneum. Onc says it can very well be scar tissue that hadn't been there a year ago during the last scan, but it can also be a recurrence. Said it's not usual to have a recurrence 5 years out after stage 2 initial staging but everything is possible. Biopsies from inside the pouch are negative for malignancy, CEA is 1.5 which is up .1 from my last one 6 months ago but according to Doc still good.

I had/have severe scar tissue issues with the j-pouch, so I am trying to stay positive but PET will tell. Trying to get one done asap.

Crap. So close to the statistical 5 years.... Grrrr. Stupid Stupid Stupid Cancer.

Be well y'all!!!

 

 Toddi 

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

Good luck!!! I hope it's just scar tissue. If it isn't I'm sure it's treatable but it would be a kick in the butt to be this close to the five year mark and have to start over again. I sure hope that's not the case.

Jan

beaumontdave's picture
beaumontdave
Posts: 1062
Joined: Aug 2013

I hope it is scarring, 5 years is a great milestone, and starting the count over sucks, as I've done three times. We're rooting for you Toddi..............................Dave

toddi1973's picture
toddi1973
Posts: 41
Joined: Oct 2011

PET scan did not light up for cancer. Showed light signs of inflammation in/around the j-pouch. But no concentrations that would indicate metastatic activity.
So Onc suggests to either do a biopsy or repeat the scan in 2 months.

After he explained the procedure to get a needle in my pelvis for that biopsy, I elected to go with the repeat scan in 2 months.
Ironically enough he may have connected the dots today. 2 days prior to the CT scan, I had a pouchoscopy and partial dilation of the j-pouch which could explain why the CT looked 'off' and why there's signs of inflammation.
Eitherway... Happy Friday for me ! 

All the best of health and have a great weekend y'all !

 Toddi

zx10guy
Posts: 266
Joined: Dec 2013

You may want to rethink getting that PET scan.  Everyone worries about a recurrence with the cancer coming back.  So everyone wants to be scanned regularly so it can be caught early.  But I doubt many of you all have taken a step back and looked at how much radiation you're subjecting to your body.  While there is debate on if repeated exposure to radiation from scans such as CT and PETs can cause cancer, why would you risk this unnecessarily?  To give some perspective, a single CT scan can be equivalent to getting 100 to 200 chest X-rays all at once.  How many of us would blindly sign up for this if someone presented this information up front to you?  A PET/CT exposes your body to even more radiation than a CT.  Here are some sobering numbers to compare.  A chest X-ray gives a .1 mSv dose.  A CT with and without contrast gives a 20 mSv dose.  And a PET/CT gives a 25 mSv dose.

You can see a nicely formated chart and a discussion on radiation exposure from medical imaging in this Consumer Reports article:  http://www.consumerreports.org/cro/magazine/2015/01/the-surprising-dangers-of-ct-sans-and-x-rays/index.htm .

If I were you I would strongly consider that biopsy option.  Also any scan technology has a potential to miss things.  That's why if something shows up on a scan(s), a biopsy is typically the next step.  I had a negative PET result on two lesions in my liver at diagnosis but my liver specialist performed a biopsy of those regions during my resection procedure to be more sure about the results.  In his words, he wanted to rule out a false negative.

[Off topic]The search engine used for this forum is the worst I've ever come across as I had posted a response on the topic of scans and radiation load a while back.  No matter the different search terms I tried to use I either got no hits or too many to sort through.  Also, the fact I can't even pull up all the posts I have made as a search option is equally bad.[/Off topic]

Trubrit's picture
Trubrit
Posts: 5193
Joined: Jan 2013

Off topic]The search engine used for this forum is the worst I've ever come across as I had posted a response on the topic of scans and radiation load a while back.  No matter the different search terms I tried to use I either got no hits or too many to sort through.  Also, the fact I can't even pull up all the posts I have made as a search option is equally bad.[/Off topic]

I totally agree; I have also been very frustrated trying to find topics or even my own posts.

i thought I had saved your post about PET & CT's but it was your informative post about CEA .  I was hoping to be able to help  

I will be saving this post to favourites.

Thankyou!

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

from what I've read, the impact of radiation tends to show up about 30 years down the road, so for many of us, the value of careful scanning now outweighs the chance of another bout of cancer when we're in our 70s or 80s.

I was also told my oncologist that biopsy can miss the spot all together, thus ending up with a false negative as well (and I'm in an HMO, where they don't make additional money by doing extra scans).

Full disclosure:  I survived four recurrences and an extra malignant tumor type through frequent PETS (followed by surgery, as I was a chemo failure).

Just more stuff for folks to think about.

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

Whatever direction you decide to go in, it's the right one for you.  I'm all for wait and see. 

Trubrit's picture
Trubrit
Posts: 5193
Joined: Jan 2013

So happy to hear that it looks better than you thought. 

If they can mildly sedate you for the biopsy, that may be the road to take. zx10guy has shared some great info to think about. 

SUE

toddi1973's picture
toddi1973
Posts: 41
Joined: Oct 2011

Hi Guys,

totally agree that PET and CT scans are an additional radiation that should be thought through carefully whether to get it or not.

On the other hand I am worried that a biopsy would break the encapsulation of the tissue. If it is cancerous, that would enable cancer cell clusters to spread freely through the bloodstream or into the peritoneum. So in my head, I am stuck between a rock and a hard place. If my onc had suggested another PET scan, I probably would have had an even harder time as the radioactive tracer in the PET scan is 14mSv for my bodyweight in addition to the 10mSv from the Skull to knees CT. But he explained why a PET scan would not be necessary as the tissue didn't show up on the PET piece at all. So all he wants to do is an abdominal CT scan (6 to 8 mSv for the abdomen only). 

So that leaves me with an additional dose to 6 to 8 mSv vs the possibility to break encapsulated tissue during the biopsy. Both not necessarily great options. But there is no good options with our disease. there is only less worse from what I found. 

I have another appointment with Cleveland Clinic next week and will raise these concerns and see what their take on it is.

I definetly appreciate the thoughts and tickling of my brain to think this through thouroughly !

Toddi

 

p.s. Very interesting report that you had linked ! Thanks !

NewHere's picture
NewHere
Posts: 1197
Joined: Feb 2015

My onc kicked me back to a 6 month scan for the CRC a month or two ago, but bloodwork for initial thing they were watching (which lead to the CRC being found), lit up.  He wants to do an MRI before going for a biopsy to get a better sense of whether it is cancer or not.  But this discussion has given me pause.  I am leaning to the scan still since it is two days away and would also be needed for biopsy/surgery anyway in terms of imaging (if I understood what they told me)

Hoping you are blowing bubbles again shortly. :)

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

Myths, missed and messed

 

Linkos:

http://www.cancer.gov/about-cancer/causes-prevention/risk/myths

http://www.mayoclinic.org/diseases-conditions/cancer/in-depth/cancer/art-20046762?pg=2

http://www.cancertreatmentwatch.org/general/biopsies.shtml

The most important factor that any individual should take time to understand, is exactly what a cancer cell is, and what it is not.

SO..... Let's try this approach:

Any cell that is damaged so badly that it can no longer survive as any "normal" healthy cell can, can begin a new survival by another means. The damaged cell can begin to use the fermentation process to survive. The cell will take in glucose and eject Lactic acid (as waste). The lactic acid is converted into glucose by the liver. It's a very simple and basic method of survival.

That defective cell that is now living by the fermentation process cannot "hear" the body's instructions regarding "how to live"; it just lives. It takes in as much glucose as it wants to without restriction; the normal cells are restricted, since they are following the guidelines; they can "hear" the instructions, while the "rogue cells" can not.

Although there are many devices that can injure good cells (just look at California's list of carcinogenic devices), it should be kept in mind that any healthy body produces damaged and dying cells as the natural process of life. The process of growing and healing produces dead and dying cells by the thousands! Cells split, with 1/2 dying and 1/2 living and reproducing normally. It's a natural thing.

And just as "natural", is the body's immune system (T cells) being able to remove the dead and/or dying cells. If for any reason the immune system neglects to remove that defective cell (or cells), those cells can begin to use the fermentation process to remain alive. And in doing so, that "rogue cell" is called "cancer".

Knowing this, and accepting the facts, should provide you with knowledge that is needed/required, to sort out what can possibly help you in your fight against cancer.

It should be obvious that using anything that will damage good cells will only degrade one's ability to actually fight the cancer that's been allowed to grow within....

Getting a biopsy is not going to "spread cancer", but not getting a biopsy will make it more difficult to isolate what cells there are, for any effort to surgically (or chemically) remove those defective cells.

Cancer can and does generate fear. If the fear is allowed to drive your direction, you will be succumbing to the fear, not fighting for your survival.

If you have been diagnosed with cancer, please..... PLEASE.... learn the causes for it, and accept the fact that you can indeed fight it.

And you do not have to suffer the "remedy". If the "remedy" is making you weak, the remedy is defeating it's purpose.

You need to remain strong and as healthy as possible to fight the cancer. Your "fight" should not be against the so-called "cure". If you have to fight the reactions to the "cure", you are fighting a losing battle. And in that type of battle, only the very, very strong have a chance at survival.

Learn what cancer is, and what it is not.

"Where there is no vision, the people perish"

I wish for the very best health for each and every one of you here.

John

 

zx10guy
Posts: 266
Joined: Dec 2013

Probably too late to have any influence in your decision.  But an MRI is different than CTs and PETs.  MRIs use magnetic fields to generate the diagnostic images.  Magnetic fields have been considered by most to be more or less harmless to humans.  I say more or less as there has been some people that debate this.  MRIs don't use the same high energy radiation used in CTs and PETs.

Helen321's picture
Helen321
Posts: 1409
Joined: May 2012

Hi, Are you kidding me?  Grrrrr seriously, it never ends.  I never thought I'd say well let's hope it's scar tissue but let's just hope it's scar tissue.  Especially after you did the extreme surgery.   Good that the scan came out clean and let's keep it that way!  I wouldn't do a biopsy either, too risky!  

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