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Shocked about Stage IV diagnosis

Bernsantosrn
Posts: 4
Joined: Sep 2013

Hi everyone.  My mom is 66 yrs old, not overweight, with controlled hypertension and was just diagnosed with colon cancer with mets to the liver- 4 spots in scattered areas so can't be resected. Then only symptom she had was some blood in the stool and feelings of not completely emptying when using the bathroom.  Based on CT, she will need a hemicolectomy to avoid obstruction and then chemo afterward.  Her labs have been normal, liver function is normal, no cirrhosis or other disease in the liver and physically she is strong and appears healthy which means she should be fine and recover from the colectomy.  

We live way out in the Pacific and my siblings and I have been trying to rack our brains ashouted should do as far as where to go for treatment.  Do we let a general surgeon do the procedure at our one local hospital, keeping in mind that it doesn't have a critical care doc or fly her to Hawaii or LA for the surgery.  Then do we have her stay there for chemo which I assume may be better or come back to our island to have her do treatment and be with her children?  Anyone have thoughts on what to do?  My greatest fear is her being away from us to do treatment and losing precious time with her.   I'd appreciate any feedback.  

renw's picture
renw
Posts: 282
Joined: Jan 2013

Don't buy into the " can't be resected" crap. Look into ALPPS. My liver looks like swiss cheese with too many mets to count and yet with just a single 7% healthy spot I was able to get a resection using this new procedure.

lilacbrroller's picture
lilacbrroller
Posts: 332
Joined: Jun 2012

I love this board.  I would never find out about ALPPS. My doctors would never tell me about it, and I would probably never find it myself on the internet if researching.  Thank you Ren.  I probably won't have it done, but the fact that we all are made aware of this procedure through this board is simply priceless.

 

Karin

Bernsantosrn
Posts: 4
Joined: Sep 2013

The two surgeons we have spoken to have said because the tumors in the liver are in different segments, resection can't be done and wed have to just rely on the chemo.....

Chelsea71
Posts: 1170
Joined: Sep 2012

Steve had multiple tumors in four segments.  Turned down emphatically by numerous surgeons.  Found a really reputable surgeon that said it would be a fairly simple two stage resection.  Keep looking.

Lovekitties's picture
Lovekitties
Posts: 2993
Joined: Jan 2010

So very sorry to hear about your Mom's situation.

If it were my mother, I would vote to take her to the mainland for the surgery.  Having a colorectal surgeon rather than a generalist is very important.  While there, they can determine best treatment plan to follow afterwards.  They may also have some treatments in mind for the liver issues.

For the chemo, as long as the drugs required and services are available on your island, there should be no problem about her retuning there for treatment.  It is done like that here in the states when the patient is distant from the main facility.

This is just my opinion. 

Wishing your mom best outcome with tretments.

Marie who loves kitties

Bernsantosrn
Posts: 4
Joined: Sep 2013

Thank you for the welcome and the advice.  Mom has Medicare and private insurance but mom and dad are weary about navigating the system in an area they are not familiar with.  They are not big travelers.  We are currently visiting in Manila seeking consults and just learned that because she has Medicare, she can't do the surgery here. So now we have to decide option A- to self pay here for surgery then go back home to Guam for the chemo, option B- have general surgeon do it in Guam under insurance Option C- go to Hawaii or Cali under insurance.  Mom and dad are comfortable here more than in HI or Cali since they are from here.  They are considering sacrificing paying out of pocket for sake of convenience (means no 10-16 hour plane ride and finding lodging etc).  I think I can't get over the fact that they have insurance and worked for it so shoud use it.  But I also understand they want to be comfortable.  For you who have experience with hemicolectomy, how is the recovery?  What where the course of events?   Again, she is strong right now.  You'd never know she has cancer- walking around, cooking able to shop for hours at a time.....Also, h anyone provided feedback abouscare at Straub in Oahu, Hawaii?

minibull
Posts: 54
Joined: Oct 2009

I think your Mom would be more comfortable in Hawaii than on the mainland.  The travelling time is less and if you are Filipino or Guamanian, it would be less intimidating for her especially if language may be a problem.  Straub has a very good reputation and we have some very good doctors here.  There is a group of oncologists that are wonderful and we have a nationally recognized Cancer Center.  I had my colectomy done by a Hawaii surgeon and he did a great job.  Maybe she could come to Hawaii for a second opinion and decide then where she would like to have her treatment done.  PM me if you want more information on care in Hawaii.

LindaK.
Posts: 360
Joined: Apr 2013

Hello and sorry you have joined this group, but you will find many helpful people here.  My husband had a right hemi-colectomy in December, 2012.  He was not staged until the path came back from the tumor removed so I'm not sure how your mother can be staged yet, maybe they have different tests where you are.

Anyway, his surgery was estimated to take 4-6 hours, but he was done in about 2 hours.  They called it laporascopic where he had about a 4 in incision around his belly button and 4 small holes for the equipment, we called it his "field of dreams" since it looked like a baseball diamond.  They said they removed about 2 feet of his colon and a large tumor, about 4 cm.  He had been admitted to the hospital 4 days prior with a complete obstruction.  He had an NG tube for 4 days before the surgery and less than 2 days after the surgery.  The evening of the surgery (he got done around 6 pm) he was out of it until I left around 11 pm.  He would speak nonsense and would be awake on and off.  He had no temporary or permanent colostomy and was not on the ventilator past surgery.  These were things they told us "might" happen.  The next morning he was calling me at 6 am asking where his newspaper was. I was very surprised at how well he was recovering.  They had him up a few times that day walking with all his tubes.  He also had a catheter until about 40 hours after the surgery.  Both the catheter and NG tube were removed around the same time.  That made him feel like a new man.  I think he was so happy about that, he did overdo it a little on that day.  That evening he was having a slight fever and not feeling so great.  He was still in ICU because the hospital was full of flu patients and had room for him to stay was he was.  I was able to take care of most of his needs so he didn't need much care.  He was moved to a regular room 2 days later and went home 5 days after surgery.  He did not have much pain and only took the pain meds for the first few days after surgery.  He was on a very mild diet for a few days and then was tolerating regular food before he went home.  A little too much info - he did move his bowels within a few days of surgery - they said it was probably was had been "stuck" in his bowels above the tumor and the prep he took for the colonoscopy he had 3 days before the surgery.  They also took 13 lymph nodes and all tested clear, which again we did not know until the path results came back about a week later.

The only advice I can give you is to make sure your mother stays hydrated and keeps moving her bowels.  If she has a tumor in her colon, it can irritate the bowels which may shut down. She should eat a mild diet with plenty of stool softeners, laxatives, etc.  A complete obstruction is no fun and may force an emergency surgery.  I would also think long flights would be exhausting after surgery and during treatment.

Good luck and keep us posted on her decisions and progress.

Linda

Bernsantosrn
Posts: 4
Joined: Sep 2013

.

janderson1964's picture
janderson1964
Posts: 1828
Joined: Oct 2011

I am sorry you have to be here. With that said welcome. I was dignosed stage IV 8 years ago. It is not a death sentance but in many cases a chronic disease. I think she will be fine with a general surgeon for her colectomy. That is who I used. BTW I have had 3 liver resections and now looking at possibly a 4th. Get a second third forth opinion. What ever it takes. I have fired 2 oncologist because I didn't like what they said. Take my frien Renews advice above. Also I have read countless stories about inoperable liver mets and chemo was effective enough to make surgery possible.

tanstaafl's picture
tanstaafl
Posts: 1014
Joined: Oct 2010

The surgeons often avoid stage IV operations as "inoperable" because dogma says postsurgical recovery and metastasis will make things worse than just doing chemo.  They appear to be totally unaware of many Life Extension reports on cancer surgery, metastasis, and colorectal cancer.  Obstruction usually can open the operating room's door anyway.  A primary goal of the survivors on these forums is to find that special surgeon (usually colorectal) who can handle their case, get qualified for surgery and get 'er done. 

My wife was pretty much in the same place several years ago, obstructing with bad biomarkers too (much more now known, looking back).   Pre-op, we hopped up part of the LEF Extension formula with some crucial extras, added more after surgery.  In my wife'scase, they only removed the obstruction and nearby stuff in the first surgery.  Some lesions were not immediately recognized, presumably because they were so damaged by a "fortuitous" immune attack, much like some of the cimetidine/immune research showed.  After surgery, she added low dose oral Asian drugs, tegafur uracil + leucovorin, for chemo plus a lot of carefully chosen alternatives recommended by LEF or other supernutritional advocates with MD/PhDs.  After successfully avoiding new mets, she was reoperated on a year later, now over two years ago.  

Renw's ALPPS will likely require recovery time, more travel - it's new and not common.  It has an important feature, major liver surgeries carefully coordinated closer in time to curatively remove liver mets. Some hospitals use multimodal approaches, like surgery, RFAs, chemo, and hepatic arterial chemo in a coordinated sequence.

Are you outside US territory?  If you are a mostly cash customer, Manila or Tapei may be closer/cheaper. You do want specialized surgeons usually located in top hospitals in a big city.   Be warned, none of how we used chemistry is standard and most doctors don't know it, don't want to hear it, so it is done quietly in parallel with their agreement. She's done quite well where the other 99 couldn't argue.   

 

Chelsea71
Posts: 1170
Joined: Sep 2012

You're mother CAN be resected.  Probably quite easily.  It's just a matter of finding the right surgeon.  Keep meeting with good surgeons until you get the right person.  Do not take what one doctor says as gospel.  Every surgeon will give a different opinion.  They all have different levels of comfort.  Don't be discouraged by what any one doctor says.  Find someone who you and your mom like.

 

Chelsea

hippiechicks's picture
hippiechicks
Posts: 374
Joined: Sep 2012

Hello ... so sorry to hear about your Mom.

Glad you found your way to this board.  There is some really awesome knowledge out there!

I agree with Marie who loves kittens.  A good colorectal surgeon is crutial.  There are too many things that can go wrong, and having someone experienced with this particular surgery is reassuring to say the least. 

I also feel your mom would benefit from being close to those she loves and love her to help her through the treatments.  There may be times where she is just fatigued and would benefit from having family close by to help her with simple things or just to make her smile. This alone may be very beneficial in her recovery! 

I also would strongly suggest at least 2 or more opinions regarding the liver surgery if at all possible!! 

I wish you and your mom the very best.  You are not alone.  Lots of support here on this forum. Cool

herdizziness's picture
herdizziness
Posts: 3492
Joined: Apr 2010

First off, it is shocking to learn one is Stage IV and that certain areas are inoperable at this moment, doesn't mean it will always be inoperable.

As for the colon surgery I agree going with a colorectal surgeon, although I did just have mine done by a regular surgeon, I will not be doing that again.  The colectomy isn't too bad a surgery, I had mine last Tuesday, cooking, doing laundry, cleaning, all this week and going back to college this Monday.  

The chemo can be done on your island, so you all would be there to support and help her out.

I had several mets scattered around in liver as well, did the chemo, then had a colectomy, liver and ureter resection done at the same time (this was three years ago), since then in May of this year I had amother liver resection, and last week another colectomy.

Wishing your mother and your family the best.

Winter Marie

Scubadan (not verified)

You need two surgeons.  A colorectal surgeon and a liver surgeon. A liver surgeon will be able to give you the best advice and course of surgical treatment. some tumors must be resected, some can be wedged out, some using RFA (RADIO FREQUENCY ABLATION), or pinpoint freezing. The liver surgeon I talked to here in Dallas/Fort Worth has stopped doing liver transplants because the success rate is so low. He specializes in liver cancer surgeries and has much higher rates of success. My tumors were in multiple segments of my liver and he posed that as no problem. He would resect as needed, wedge as needed, and ablate as needed after he got in there to see just where and what needed to be done.

I work in surgery in one of the annually highest rated children's hospitals in the USA. One of our general surgeons is one of the best and most admired by his own peers and even the neurosurgoens say he has the best pair of hands they have ever seen.  He told me not to let anyone but a specialized liver surgeon do my surgery. It is complex and requires skills aquired through experience.

You have a lot to think about, but the best outcomes require research and valued opinions from several oncologists.   Dan

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