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PET results - Mets to liver, and a worrisome spot in the rectum - UPDATE April 17th

Trubrit's picture
Trubrit
Posts: 5486
Joined: Jan 2013

Thank you so very much, Patchadams and those who were thinking of me today. 

So, there is a worrisome spot in the rectum and a growing spot on my liver. As far as the spot in the rectum, my Oncologist is baffled, as I was radiated to Hell and back in that area, plus I had a clean colonoscopy in January. Anyway, he wants me to have another colonoscopy and follow that up with a liver resection. 

I have now been bumped up to a Stage 4 of course. 

BUMMER!

Oh well! Me and thousands and thousands of other fine folk out there fighting this battle, means that I'm not going to spend my time feelign sorry for myself. We'll move on, and do what has to be done. 

I am so very thankful that I found this fourm, and so very thankful to all of you. For your support, your willingness to share information, and I feel the love, so I'm thankful for the love that is shown. This forum is truly a blessing. 

I'll be after info on liver resections now. Advice about what to take to the hospital, how long are patients usually kept in. Problems that might happen. Clothes to wear. All the good info kind of stuff. 

Onward and upward (but not Heaven, not yet).

APRIL 17th - UPDATE - I have an apppointmet for a Flexi Sig on Monday and an consult with a Surgical Oncologist on Tuesday. My first appointment is 2 hours East of home, and the second appointment 3 hours West. Gotta love living in the rural outback of desert Nevada. 

I'm very happy to be moving forward to get this taken care of. Waiting stinks!

UncleBuddy
Posts: 1019
Joined: Aug 2013

That's not the news I wanted to hear. Is it possible that it's an ulcer or something else that's non cancerous? I'm hoping...

When will they do the liver resection? How big is the spot on the liver?

I'm keeping my fingers crossed that the spot on the rectum is nothing.Will they biopsy the liver or is that not a good idea?

Lin

lp1964's picture
lp1964
Posts: 1240
Joined: Jun 2013

I won't tell you a secret that with the raising CEA that spot on the liver is most likely metastasis. But the good news is that with resection you have a good chance of recovering from that.

I want to tell you more about the rectum part. 10 weeks after my radiation and initial chemo my rectal cancer actually looked worse. Still at the time of the removal there were no cancer cell in it. The radiation killed them all. The colonoscopy and the little samples they are gonna take will give you more definite answers.

We really root for you and wish you good luck. Those people who had gone through this before you will give you a lot of good advise.

 My only standard advise is to start taking 800mg of cimetidine one week before and two weeks after the surgery. It seems to reduce the chance for the spreading of cancer cells.

Laz

Lovekitties's picture
Lovekitties
Posts: 3372
Joined: Jan 2010

I am so very sorry to hear this outcome from your scan, but am glad you and the doc were on top of the CEA rise.

Prayers and love coming your way that all will be better and easier than expected.

Marie who loves kitties

jen2012
Posts: 1607
Joined: Aug 2012

Damn Sue, I am sorry.  I would say you are entitled to a little pity party, so don't feel bad if you need to vent, cry, scream or break things.  I hope it's a quick fix with surgery.

Cathleen Mary
Posts: 827
Joined: May 2011

Sue, So sorry you have more to go through. You can do it! I love your attitude.  Prayers every inch of the way. Thinking of you....

Hugs,

CM

 

Lisa2012's picture
Lisa2012
Posts: 142
Joined: Feb 2014

Sorry to hear that you have joined those of us in the Stage IV category.   You have the right attitude, onward and upward.   You and I are on a similar path right now.   I was diagnosed stage IV two years ago.  I currently have a tumor in my rectum and two liver mets. The plan is to remove the tumor on 4/28 using a process called TEM.  The liver mets will be handled with Y90.

A year ago, I had a liver resection.  They did an ultrasound of my liver while I was in surgery.  After about six hours, they had removed the right lobe of my liver, my gall bladder, and a few other non essentials.  I spent two nights in ICU and a week on a surgical  floor, nine days total.  I tried hard to be a good patient, I walked the halls at least four times a day.  My surgery was on March 5 and I returned to work the first week of April.

i think the biggest shock to me was the length of my incision.  My scar runs from between my breasts to my pubic bone.  I had 160 staples and three J-P drains.  

Good luck to you, keep us posted

 

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

Frown.

I was just really hoping for you this would turn out to be nothing.  F'ing cancer.

Is it just the one spot in the liver?  

aggie0053's picture
aggie0053
Posts: 110
Joined: Mar 2011

good luck on your journey to beat this, i know you will

PatchAdams
Posts: 271
Joined: Nov 2011

Sounds like you might be a Stage IVa which is a newer staging system when someone is more than 12 months out and has one or a few small mets. That's considered highly curable. 

I had my liver resection two years ago this week and it was a hard recovery because I couldn't take the pain killers. They gave me anorexic type symtoms where even smelling food, looking at cook books, sherbert caused projectile vommiting.  So, I had to deal with some pretty awful pain.  NO follow up chemo ..... no studies have shown it to be of any benefit.  

Here's some great links. The first one is my favorite and even tho the study ended 10 years ago, the success rates are superb!  My favorite quote is: 

Solitary Colorectal Liver Metastasis Resection Determines Outcome FREE

Thomas A. Aloia, MD; Jean-Nicolas Vauthey, MD; Evelyne M. Loyer, MD; Dario Ribero, MD; Timothy M. Pawlik, MD, MPH; Steven H. Wei, MS, PA-C; Steven A. Curley, MD; Daria Zorzi, MD; Eddie K. Abdalla, MD

 

 

Researchers at M.D. Anderson Cancer Center at the University of Texas prospectively studied patients with a first solitary liver metastasis who were treated either with hepatic resection or radiofrequency ablation. ….

 present study shows an 80% 3-year survival rate (and a 71% 5-year survival rate) after HR and well-established data showing 10- and 20-year survivors after HR of solitary and multiple metastases, even without adjuvant chemotherapy.  (The rates are higher for mets smaller than 3cm)

http://archsurg.ama-assn.org/cgi/content/abstract/141/5/460

 

http://www2.mdanderson.org/depts/oncolog/articles/11/4-5-aprmay/4-5-11-2.html

 

I got these from a friend who was just days ahead of me on everything.  She got a term from Bev on Colon Club that you might look up. Ogliometastases (?)  Curative local therapy for oligometastases and oligo-recurrence represents a brilliant opening to the era of cancer therapy. Several decades ago, most metastatic and recurrent cancer patients died within a year. However, we cope with metastases or recurrences considering whether the state is oligometastases or oligo-recurrence. In the state of oligo-recurrence, all the gross tumors could be treated with local therapy, meaning curative treatment.

 

Do a search for more info.

 

janderson1964
Posts: 2215
Joined: Oct 2011

I am truly sorry to hear that. i am glad you have a strong fighting attitude. At least they are already talking about liver resection. I will keep you in my prayers.

maglets's picture
maglets
Posts: 2596
Joined: Jun 2006

Sue so so sorry about this news.....darn it all.....but having liver resection in your sights is such a good thing.....

there are so so many liver resections on this forum, we will get you set up and ready with lots of tips

sending love dear girl......you are a trooper I can just tell

mags

LindaK.
Posts: 506
Joined: Apr 2013

Stupid cancer!  I woke up during the night and thought about you, almost got online to see if you had posted anything.  I'm sorry you got the stage IV news.  At least now you know and you can move forward with treatment and plans.  I'm glad they gave you plans for surgery which will hopefully get rid of the beast.  It sucks, but you can do it.  Thanks for letting us know the scan results.  Your good attitude will help.

Linda

danker
Posts: 1282
Joined: Apr 2012

I just love your attitude regarding your battle.  It will do much for making you a long-time survivor.  Best of luck to you!!!

DD3's picture
DD3
Posts: 134
Joined: May 2013

damn it Trubit... This is not wanted I (or anyone else on here) wanted to hear.  Not at all.  You positive outlook is inspiring to say the least.  Please keep us informed.  Thoughts and prayers for you will continue. 

marbleotis's picture
marbleotis
Posts: 715
Joined: Mar 2012

My cancer-mentor and friend was stage 4 with mets to liver.  She had the resection, 12 chemo treatments and about 70% of her liver resected.................  that was 12 years ago.  This was the first thing she told me when we first spoke. 

I thought this may help you feel a little better.

Please keep us all posted - we are here for you as you move through these challenges.

You are one tough cookie!

ron50's picture
ron50
Posts: 1729
Joined: Nov 2001

  Sorry you are back into treatment mate. Just remember ,cancer is just a disease and diseases can be beaten. You need a bit of luck and the resolve to do whatever it takes to beat it. I'm sending the luck and you already have the resolve,Hugs ron.

Annabelle41415's picture
Annabelle41415
Posts: 6715
Joined: Feb 2009

Sorry to hear of your scan.  You have a great attitude on trying to beat it again.  Hoping that you and your doctor can put a plan in the works to get you clear again.

Kim

johnnybegood's picture
johnnybegood
Posts: 1122
Joined: Oct 2008

as you are once again going thru the testing phase and then probably the waiting phase.so sorry this has hit you again my prayers are with you...Godbless...johnnybegood

Momof2plusteentwins's picture
Momof2plusteentwins
Posts: 508
Joined: May 2012

I am glad you have Appts to get this started. I am also stage IV with a single liver met. I am now NED after liver resection almost 2 years ago. Even though any recurrence is not positive, I believe you will be NED soon. I had my liver resection surgery along with my colon surgery and my gallbladder out and was in the hospital for 6 days. Good luck with treatment and always remain positive and you will get through this!
Sandy

YoVita's picture
YoVita
Posts: 590
Joined: Mar 2010

Like PatchAdams, I've done some research on single metastases (although mine was lung) and the outlook is very promising.  I'm two years out from my lung recurrence and surgery.  Like PatchAdams I did no follow up chemo.  Good luck Sue.  Sounds like you have a great plan.

Helen321's picture
Helen321
Posts: 1428
Joined: May 2012

I've heard about the Cemitidine also although I didn't know the name of it until Laz said it.  I wish I had taken it before my surgery.  I'm not sure why it's not encouraged by more doctors.  How do they confirm what you're seeing is actually cancer?  I have some "lumps" just under my skin that I have to have checked out but my doctor said they can be a virus which is not uncommon after radiation and chemo so I'm betting on that.  I'll go on Thursday.  Is it possible the rectal scan could be something like that, a virus or a cyst? Let's see what happens with the colonoscopy.  And hopefully the liver will turn out to be nothing as well.  Gotta keep hope going until you actually have confirmation.  I'll be thinking about you this week.

Trubrit's picture
Trubrit
Posts: 5486
Joined: Jan 2013

I guess having a liver resection is an expensive and somewhat painful way to find out if its cancer or not.  But, the Doctor said the spot 'lit up' on the PET scan, plus my CEA jumped from .5 to 10.9 and then quickly to 19.6. Something is going on, for sure.

My GI Doctor thinks that the spot that looked 'Worrisome' in the rectum is probably the radiation damage he saw during my January Colonoscopy. So instead of another Colonoscopy, I will have a Flexible Sigmoidoscopy.

I got a call from the hospital this morning telling me that the Flexi Sig procedure costs $29,450.00   Insurance will pick up some of it and I need to come up with $8,000 (thank the Lord for The Credit Card).  I'm really hoping that the insurance will cover 100% of my Liver Resection. I need to give them a call.  

Ah well! Of we jolly well go (said in my best English accent). 

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LivinginNH
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Hey Sue,

I am so very sorry to hear of your recurrence, it truly hurt my heart to think that you’re back in the fight so soon.  I wish you well on your upcoming operation, and I’m sure that you’ll do just fine and it will be all over before you know it.  :)

All my best,

Cynthia

sdp's picture
sdp
Posts: 181
Joined: Jan 2012

The costs seem very high to me - maybe u can ask some other facilities and bargain with ur insurance - no harm in trying - u got to tell them that with all the procedures there is no way u can make such a larger payment from ur end - ask them what are ur alternatives I that case etc 

Annabelle41415's picture
Annabelle41415
Posts: 6715
Joined: Feb 2009

Can't believe a flex sig would cost that much.  Last mine was around 2,000 and mine is all out of pocket so I'm responsible for the whole thing.  Guess I'd get a second opinion on an amount because that just seems too high.  I'm paying for my colonoscopy this year and it's going to be about $2,500.  My deductible is so high so I'm responsible for the first $7,000.  Maybe there is another hospital that you can go too. 

Kim

Trubrit's picture
Trubrit
Posts: 5486
Joined: Jan 2013

Living in rural Nevada, I know the hospitals hike their prices, but compared to what you quote, and what I've been reading on the web, $29,000 is far beyond the exreme. I ended up paying up front, almost $3,200.

Even if this included hospital fee, sedation (which I won't be getting as it never works) and Doctor's fees, it really shouldn't get anywhere close to that price. 

I don't want to cancel, as my Oncologist wants to get on with the liver resection, but he wants me to get the spot in the rectum checked out first. Living in the rurals really has its drawbacks. 

I will definitely be asking for a breakdown of the fee. It is truly ridiculous. 

UPDATE - I called the hospital, but of course, its a weekend and nobody was available.  My procedure is Monday, and I will probably go ahead with it, but you can bet I will be making waves about the price. 

lp1964's picture
lp1964
Posts: 1240
Joined: Jun 2013

...test like that should not be more than $3000. Come on! It's a test that takes a half an hour.

Please, double check! I wish you the best possible outcome.

Laz

 

UncleBuddy
Posts: 1019
Joined: Aug 2013

Try to negotiate with them. See if your doctor can call to negotiate the price. That sounds like a lot of money to me. My brother just has a colonoscopy because he had rectal bleeding. It was an ulcer caused by past radiation. His colonoscopy was paid for in full. I don't get why some insurance companies charge for these things and others don't. I boggles my mind.

Try talking to them. It won't hurt.

Lin

PS good luck on your test.

Buddy2013
Posts: 17
Joined: Nov 2013

Be strong Trubrit.   Sending best thoughts your way!  My liver rx was last month.   Walk as much as you can after surgery.  It helps.

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