So many questions

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tater
Posts: 31
Joined: Wed Jul 19, 2017 5:53 pm

So many questions

Postby tater » Thu Jul 20, 2017 2:02 pm

Hello I'm new to the forum wish I wasn't here but I am. My 38 yr old wife was Dx on 3/3/17 with a 6cm mass in her rectum with lymph nodes in the pelvis. Her initial CEA was 26 than a month later 29. She has done the pelvic radiation with 5 FU drip. She was preparing for surgery when a CT scan showed three 4-6mm spots on the right lobe of the liver. It was devastating and it cancelled the surgery this week, at the time her CEA had dropped to 2.1 after radiation and now is at 2.3 before the frist round of chemo. She is now on chemo I think FOLFOX and Avistan. We are going to try that plan for few months to see if we can destroy the liver mets and clean it up prior to surgery this winter. What am I missing, why did the original 5 FU not keep it from spreading? Was the seed already there? Has anyone had success with this plan in cleaning up the liver. She is young, healthy and in shape and and has never abused her body. She's also very stubborn and strong willed. This new news has made her doubt and think of the worse outcome. We have young kids and would like to keep her around longer but its up to the treatments, cancer and God at this point I feel. Are there any other options we should look at? We live in Utah and the closest cancer institute is Huntsmans Cancer Center, has anyone had good luck there. I see so many going to MD Anderson how does a middle income out of state guy get there?

thanks
DH to 38 wife w/kids
Stage 3C DX 3/3/17 CEA 29
5-fu and radiation ended May 17, 17
Stage 4 Liver mets 3(5mm-6mm) and iliac node July 17, 17
FOLFOX + Avistan July 18 CEA 2.3

weisssoccermom
Posts: 5762
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: So many questions

Postby weisssoccermom » Thu Jul 20, 2017 6:26 pm

Hello Tater and welcome to the forum. Sorry you have to be here but you will find a lot of information and many people willing to chime in to give you their opinions.
Regarding your question as to why didn't the 5FU stop the spread.....you have to remember that the 5FU given with radiation is NOT the same strength as what a patient gets when he/she is going through rounds of chemo. Secondly, only having a reduced dose of 5FU for 4-5 weeks isn't going to necessarily stop any growth....it isn't meant to when given with radiation. Considering how small the liver spots were when they were found, it is likely that they were there from the beginning.
I've been on this forum for 10 years now and it does seem as though the treatment your wife is getting is pretty normal....in other words, I'm and not sure, at this stage, that going anywhere else would get you a different result. Just guessing here, but I think you'd find that anyplace your wife would go would at least start with this treatment. Remember, if the docs didn't think it would be successful, they wouldn't be putting a patient on that protocol. Over the years, I can't tell you how many members have come to this forum, devastated because they have been told that their liver mets (all with way more than three very tiny liver mets that your wife has) were inoperable, only to do months of chemo, have the mets disappear and have a liver resection and their cancer/rectal surgery. In other words, be positive, give it a shot and have faith that this IS the treatment that has been shown to be effective. It's a bummer when all the plans you think you have about cancer treatment are turned upside down and I can almost guarantee you that this won't be the first time that some glitch comes along and the 'plan' is altered. Along the way, your wife's treatment will likely take three steps forward and a step or two backwards. The important thing is you continue going forward....even if it means it takes a little longer to get to the end! Take all of this ONE day at a time. As others will tell you, cancer is a marathon....NOT a sprint.
Relax, take a breathe, go outside and look at the beauty that summer has to offer. Enjoy each other and just be there for your wife. You will get through this but remember, just take it ONE day at a time.
Best of luck.
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness

Lee
Posts: 5293
Joined: Sun Apr 16, 2006 4:09 pm

Re: So many questions

Postby Lee » Thu Jul 20, 2017 6:42 pm

tater wrote: . . . I see so many going to MD Anderson how does a middle income out of state guy get there?

thanks


Check to see if they accept your insurance plan. Butt yes please get a 2nd and a 3rd opinion at a major cancer treatment center. I'm not up on Huntsmans Cancer Center, butt that might be a good idea also. With a stage IV diagnoses, getting a couple of different opinions is a good idea.

KNOW that that are many people here who are NED (No Evidence Detect) today and had liver mets at diagnoses. Butt you've got to find a team of doctors that are going to treat her aggressively. Also major cancer center tend to have the latest and greatest advancements. Has your wife had a PET scan yet?

Another good hospital to check out is Sloan Kettering Memorial in New York City. Dr. Kemny has helped many people here with liver mets.

There is a facebook Colon Talk that many people from here are members of. It is by invitation (you can ask to join). It were people share info on treatments and the best places to go.

Hope this helps, Know that you have joined a forum that has a lot of knowledge people who have walked in your shoes right now Know that are not alone here.

All the best to you and your wife, sorry for the reason you had to join.

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

Basil
Posts: 213
Joined: Thu Mar 16, 2017 12:33 pm

Re: So many questions

Postby Basil » Thu Jul 20, 2017 7:40 pm

Tater, sorry you're here. I'm forty with young kids diagnosed stage 3 with lymph mode involvement 3/16/17. Similar initial journey although I don't have any mets. I'm at MD Anderson and was itching to start chemo. My onc told me statistically it doesn't really matter if we start this week or three weeks from now - it's a slow grower. I'm not an expert but the strong inference is the met card was dealt before you started treatment; it just wasn't detectable at the time. Don't beat yourself up about it. The protocols for rectal cancer have been in place a long time and if there was data indicating your wife needed immediate or quicker care it would have been ordered.

Again, I'm a newbie, not an expert, but am very confident in the level of care I'm receiving at MDAnderson. I'd rec it to anyone. As far as signing up, it's kind of a haze (new cancer dx haze) but it was very easy. If getting to Houston is an option, just call them up and they'll handle all the heavy lifting working with insurance. I don't even think I talked to the insurance company until I was well into chemo. I'd also rec Dr. George Chang there. I have the utmost confidence in him. I had a person tell me, "He's a colorectal surgeon; not a brain surgeon, but if I get brain cancer, Dr. Chang is who I'm calling to take it out."
40 y/o male, kids 6&9
Dx 3/16/17, rectal cancer S3,t3,n1,m0
PROSPCT trial (FOLFOX in lieu of chemorad)
FOLFOX 4/5/17 - 6/26/17
LAR 7/31/17, temp ileo
pathological complete response
Adjuvant chemo cancelled (IDEA Study)
Ileo reversed 9/25/17
NED

Volfan
Posts: 73
Joined: Sat Mar 11, 2017 7:58 am

Re: So many questions

Postby Volfan » Thu Jul 20, 2017 9:21 pm

I'm new to all of this also. Diagnosed in March started treatment the first of April.
Like your wife I have rectal cancer with 2 liver mets. The liver mets started out between 2-3 cm. I'm also on Folfox and avastin. The avastin was started on treatment 5 due to my rectal tumor bleeding. Had my first scan after 5 treatments and the liver mets shrunk 40% and the rectal cancer had significant response. After about a month of treatment I slowly started to get my energy back and the weight loss and night sweats stopped. I will have my 8th treatment this coming Monday and I've gained the 20 lbs I lost back and I'm back at work doing 10 hour shift standing most of the day.
That's my experience so far with the treatment.
Stage IV Rectal cancer with liver mets
Oxaliplatin, avastin, 5fu
48 yr dude

Jacques
Posts: 408
Joined: Sun Dec 28, 2014 10:38 am

Re: So many questions

Postby Jacques » Fri Jul 21, 2017 2:33 am

tater wrote: ...We live in Utah and the closest cancer institute is Huntsmans Cancer Center, has anyone had good luck there....

U.S. News & World Report has released its 2016-2017 Best Hospital Rankings and named University of Utah’s Huntsman Cancer Institute (HCI) one of the top 50 cancer hospitals in the country.
http://www.healalerts.com/article/16887

For your information, Huntsman Cancer institute ranks 47th nationally in cancer, compared to MD Anderson which ranks 1st nationally in cancer. The colon cancer scorecard for Huntsman is here, which shows that it is "High Performing" for colon cancer surgery:

http://health.usnews.com/best-hospitals/area/ut/university-of-utah-health-care-6870315/colon-cancer-surgery
DX(2012): RC
Stage IIc,T4b N0 M0 L0 PN1 H0 D0 P0 I1
LAR
MSI: not tested
Chimio-radiothérapie
Chimiothérapie adjuvante : capécitabine + oxaliplatine
CEA < 1.0,
5 years NED,
End of 6-month follow-ups: 7/2017
----
Info links:
Create Your Signature
How to Select a Surgeon
List of Forum Features
Colorectal Cancer Stages (TNM)

Deb m
Posts: 358
Joined: Tue Jan 14, 2014 10:08 am

Re: So many questions

Postby Deb m » Fri Jul 21, 2017 8:38 am

Just chiming in about MDA. My husband sought all his treatments and surveillance there and we were extremely pleased. Nothing negative to say about them, it was a great experience overall! If you want any details, feel free to contact me with an e-mail. We live in Kansas and it was a 14 hour drive for us, but well worth it!

deb m

tater
Posts: 31
Joined: Wed Jul 19, 2017 5:53 pm

Re: So many questions

Postby tater » Fri Jul 21, 2017 10:29 am

Lee wrote:
tater wrote: . . . I see so many going to MD Anderson how does a middle income out of state guy get there?

thanks


Check to see if they accept your insurance plan. Butt yes please get a 2nd and a 3rd opinion at a major cancer treatment center. I'm not up on Huntsmans Cancer Center, butt that might be a good idea also. With a stage IV diagnoses, getting a couple of different opinions is a good idea.

KNOW that that are many people here who are NED (No Evidence Detect) today and had liver mets at diagnoses. Butt you've got to find a team of doctors that are going to treat her aggressively. Also major cancer center tend to have the latest and greatest advancements. Has your wife had a PET scan yet?

Another good hospital to check out is Sloan Kettering Memorial in New York City. Dr. Kemny has helped many people here with liver mets.

There is a facebook Colon Talk that many people from here are members of. It is by invitation (you can ask to join). It were people share info on treatments and the best places to go.

Hope this helps, Know that you have joined a forum that has a lot of knowledge people who have walked in your shoes right now Know that are not alone here.

All the best to you and your wife, sorry for the reason you had to join.

Lee



She has had a Pet scan back in april I believe. It did not show any activity in her liver, only the primary tumor and a lymph node in her pelvis. Since radiation the primary tumor and the node have shrunk just over 50% and we were preparing for surgery. We had a follow up CT scan that just picked up on the liver about five days prior to her resection surgery.
DH to 38 wife w/kids
Stage 3C DX 3/3/17 CEA 29
5-fu and radiation ended May 17, 17
Stage 4 Liver mets 3(5mm-6mm) and iliac node July 17, 17
FOLFOX + Avistan July 18 CEA 2.3

Lee
Posts: 5293
Joined: Sun Apr 16, 2006 4:09 pm

Re: So many questions

Postby Lee » Fri Jul 21, 2017 11:38 am

tater wrote:
She has had a Pet scan back in april I believe. It did not show any activity in her liver, only the primary tumor and a lymph node in her pelvis. Since radiation the primary tumor and the node have shrunk just over 50% and we were preparing for surgery. We had a follow up CT scan that just picked up on the liver about five days prior to her resection surgery.


I would get a 2nd opinion regarding that liver met. PET scan picks up cell activity. Cancer cells tend to be more active than normal cells. If the PET scan did not pick it up, I would be wondering if it is indeed a cancer met. Pet scan was done 3 months ago, to short of a time period. Possibly this met was missed on the PET scan back in April, butt get another opinion.

good luck,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

tater
Posts: 31
Joined: Wed Jul 19, 2017 5:53 pm

Re: So many questions

Postby tater » Fri Jul 21, 2017 2:31 pm

Lee wrote:
tater wrote:
She has had a Pet scan back in april I believe. It did not show any activity in her liver, only the primary tumor and a lymph node in her pelvis. Since radiation the primary tumor and the node have shrunk just over 50% and we were preparing for surgery. We had a follow up CT scan that just picked up on the liver about five days prior to her resection surgery.


I would get a 2nd opinion regarding that liver met. PET scan picks up cell activity. Cancer cells tend to be more active than normal cells. If the PET scan did not pick it up, I would be wondering if it is indeed a cancer met. Pet scan was done 3 months ago, to short of a time period. Possibly this met was missed on the PET scan back in April, butt get another opinion.

good luck,

Lee


I have been told by the doctors that anything under 1 cm a PET does a poor job of picking it up especially in the liver. They are basing it all off of the two CT scans and an MRI. on her initial CT on 3/3/17 it identified a liver cyst in her, yahoo it was an answer to a prayer that day. On the 7/5/17 CT scan ten days prior to surgery after pelvic radiation it showed that the cyst had grown approx. 0.5 mm and three others had shown up in the area. They were all in that 4-6 mm range. We followed that up with a liver MRI that called the spots suspicious but could not identify what they were. The docs say that cyst don;t grow and where the others showed up it has to be cancer. I am looking at getting a second opinion set up. I did that we the CR surgeon and we made a change to the one we have now. I will most likely try the local cancer institute first as I don't know how feasible it will be to get to Houston from Utah and do treatments especially with a young family.
I've been told this is a slow growing cancer but those spots showed up in four months has me concerned. Could they be cyst? I'm not hanging my hat on it. I have been told by several on another blog that the liver is famous for non-cancerous spots but I don't know.
DH to 38 wife w/kids
Stage 3C DX 3/3/17 CEA 29
5-fu and radiation ended May 17, 17
Stage 4 Liver mets 3(5mm-6mm) and iliac node July 17, 17
FOLFOX + Avistan July 18 CEA 2.3

Lee
Posts: 5293
Joined: Sun Apr 16, 2006 4:09 pm

Re: So many questions

Postby Lee » Fri Jul 21, 2017 7:37 pm

tater wrote:[ . . . I will most likely try the local cancer institute first as I don't know how feasible it will be to get to Houston from Utah and do treatments especially with a young family.
I've been told this is a slow growing cancer but those spots showed up in four months has me concerned. Could they be cyst? I'm not hanging my hat on it. I have been told by several on another blog that the liver is famous for non-cancerous spots but I don't know.


Just FYI. Many people that live out of state from MD Anderson will go there for surgery, butt then get chemo local. MDA will call the shots and the local Onc follows the plan. Butt you do have to get follow up care at MDA (every 3months, then every 6months, then yearly for a period of time).

Sometimes people go to MDA for a 2nd opinion.

Yes, colon cancer tends to be very slow growing, butt if it does met, sometime the met can become faster growing. Because you are dealing with a possible met, get an aggressive team of Dr.(s) to treat your wife. Do get an expert opinion regarding that possible liver met. 3 months is too short of a time period, if you ask me. Butt I m not a doctor, just someone who been on this forum for 10 yrs plus. Learned a few things here and there.

All the best,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

tater
Posts: 31
Joined: Wed Jul 19, 2017 5:53 pm

Re: So many questions

Postby tater » Fri Jul 21, 2017 8:49 pm

Lee wrote:
tater wrote:[ . . . I will most likely try the local cancer institute first as I don't know how feasible it will be to get to Houston from Utah and do treatments especially with a young family.
I've been told this is a slow growing cancer but those spots showed up in four months has me concerned. Could they be cyst? I'm not hanging my hat on it. I have been told by several on another blog that the liver is famous for non-cancerous spots but I don't know.


Just FYI. Many people that live out of state from MD Anderson will go there for surgery, butt then get chemo local. MDA will call the shots and the local Onc follows the plan. Butt you do have to get follow up care at MDA (every 3months, then every 6months, then yearly for a period of time).

Sometimes people go to MDA for a 2nd opinion.

Yes, colon cancer tends to be very slow growing, butt if it does met, sometime the met can become faster growing. Because you are dealing with a possible met, get an aggressive team of Dr.(s) to treat your wife. Do get an expert opinion regarding that possible liver met. 3 months is too short of a time period, if you ask me. Butt I m not a doctor, just someone who been on this forum for 10 yrs plus. Learned a few things here and there.

All the best,

Lee


So if I understand you you are thinking that the four months between scans is too short of a time for 6 mm to present them selves. My thought was I thought I had heard a Ct takes a slice every 5 mm so they must have just been under that in march but that would mean that all spots would have to have been between slices so to speak. Am I following you correctly. I plan on Monday calling at a min huntsman cancer institute for a second. I do agree aggressive is good if these are small young mets so to speak. I was under the impression FolFox with avistan was aggressive. Maybe we should see if sbrt should be used.
DH to 38 wife w/kids
Stage 3C DX 3/3/17 CEA 29
5-fu and radiation ended May 17, 17
Stage 4 Liver mets 3(5mm-6mm) and iliac node July 17, 17
FOLFOX + Avistan July 18 CEA 2.3

Basil
Posts: 213
Joined: Thu Mar 16, 2017 12:33 pm

Re: So many questions

Postby Basil » Fri Jul 21, 2017 10:04 pm

I have been told by the doctors that anything under 1 cm a PET does a poor job of picking it up especially in the liver. They are basing it all off of the two CT scans and an MRI. on her initial CT on 3/3/17 it identified a liver cyst in her, yahoo it was an answer to a prayer that day. On the 7/5/17 CT scan ten days prior to surgery after pelvic radiation it showed that the cyst had grown approx. 0.5 mm and three others had shown up in the area. They were all in that 4-6 mm range. We followed that up with a liver MRI that called the spots suspicious but could not identify what they were. The docs say that cyst don;t grow and where the others showed up it has to be cancer. I am looking at getting a second opinion set up. I did that we the CR surgeon and we made a change to the one we have now. I will most likely try the local cancer institute first as I don't know how feasible it will be to get to Houston from Utah and do treatments especially with a young family.
I've been told this is a slow growing cancer but those spots showed up in four months has me concerned. Could they be cyst? I'm not hanging my hat on it. I have been told by several on another blog that the liver is famous for non-cancerous spots but I don't know.

I had/have a spot on my liver at dx. Took two days to get it called some benign thing.
40 y/o male, kids 6&9
Dx 3/16/17, rectal cancer S3,t3,n1,m0
PROSPCT trial (FOLFOX in lieu of chemorad)
FOLFOX 4/5/17 - 6/26/17
LAR 7/31/17, temp ileo
pathological complete response
Adjuvant chemo cancelled (IDEA Study)
Ileo reversed 9/25/17
NED

User avatar
LeonW
Posts: 318
Joined: Sun May 03, 2015 4:59 pm
Location: Amsterdam, Netherlands

Re: So many questions

Postby LeonW » Sat Jul 22, 2017 4:18 am

I'm different in that I had an CC higher up, but liver mets too. It all started 4.5 yrs ago with colon resection (jan 2013)

I've been on quarterly check-ups ever since the initial colon job until 3 yrs after the liver resection. All were clear. Am on 6 months schedule now.
To me, this confirms that quarterly checkups are good practice.

Am still here, clean, without any cancer activity showing, despite the mets being inoperable back in 2013

Don't panic, give it a try. Chemo with resection is a proven treatment.
Take it by the day and don't forget to celebrate each and every success

Best wishes, Leon
Dec 2012 - Dx CC; MM 65yrs, 2 unresect liver mets, CEA 41.8
Jan 2013 - colectomy @ spleen (IVa T3N1bM1a) 2/26 nodes, MSI-low
Feb-Aug - 1x Xelox-7x Xelox/Avastin, shrinkage from #3
Sept - 2x failed Portal Vein embolization
Oct 2013 - R liver resect 28 hosp days (liver failure, bad delirium, emboli, encephalopathy) pCR; cancer gone
2014/15 - recovery; benign polyp
Apr 2016 - new house/town/life
clean CTs and 1.3/1.4 CEAs: 4x2014, 4x2015/16, 2x2017
next: June 2018 w scopy - 5yr getting close

Lee
Posts: 5293
Joined: Sun Apr 16, 2006 4:09 pm

Re: So many questions

Postby Lee » Sat Jul 22, 2017 3:47 pm

tater wrote:So if I understand you you are thinking that the four months between scans is too short of a time for 6 mm to present them selves. . . .


I have no medical training, butt I would recommend a 2nd opinion on that. Huntsman might be a good choice

Have they done a CEA test on her? Has there been an increase in numbers?

Good luck

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!


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