Totally in Shock Stage 2 to Stage 4 in 9 Months

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Gloriamazz
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Totally in Shock Stage 2 to Stage 4 in 9 Months

Postby Gloriamazz » Fri May 24, 2019 8:10 pm

August 2018 I had a LAR was told by my board certified surgeon since I had colorectal cancer stage 2 with
no nodes involved and did not invade any other organs to get the Barbie Butt and permanent colostomy.

The tumor was four inches away from the Anal Verge plus I would not need Chemo and Radiation. Surgery was 4 hours and doctor said margins clear and he got all the
cancer.

Needless to say I was in pain for 6 months some days worse than others.

In February had my 6 month scan with no mention of any new growth every thing ok with the exception of 2 nodules that were 3 millimeters on my my lungs to be watched and CT in 6 months (Sept 2019). Too small at this point to do anything.

Onward and upward. In March 2019 had rectal pain that was very hurt more than the usual pain. I called my surgeon and he ordered a CT.

The CS came back with a tumor of 1.8 x 1.8 I'm on my sciatica nerve. They called it Recurrent. Had a Biopsy 2 days later and confirmed recurrent colon disease

It also referenced the nodules that grew that are on the lungs at this time have 2 lung nodules

With this info I got an oncologist. I said was not comfortable waiting 6 months for CT scan on lungs in 6 months and wanted a second opinion.

She agreed with Doctor to wait the 6 months

Now with the new nodule on pelvis she ordered a CT for my lungs and it comes up with one nodule doubled in
Size and have two new ones and now calling stage 4 metastatic disease

This blows my mind. It sounds like a death sentence

Does anyone else have a similar situation. I am so very upset and scared

size
Last edited by Gloriamazz on Wed May 29, 2019 12:02 pm, edited 1 time in total.
June 29, 2018 Colonoscopy
found 3cm leision was biopsied came back as adenocarcinoma
Operated on August 8, 2018 Had APR removed Anus, Rectum and Sigmoid Colon
Have Barbie Butt and permanent Colostomy
March 5, 2019. Cat scan found 2 non specific lung nodules
Surgeon going to watch and repeat Cat Scan in 6 Months Sept. 10, 2019
April 29, 2019 HyperDense Liesion 1.8 x 1.8 cm

stu
Posts: 1132
Joined: Sat Aug 17, 2013 5:46 pm

Re: Totally in Shock Stage 2 to Stage 4 in 9 Months

Postby stu » Sat May 25, 2019 4:13 am

Hi ,
What a frightening experience for you and I can totally understand why that would knock the wind out your sails . However the lung spread sounds as though it has many treatment options . It sounds contained and small and that’s without any systematic treatment . You will be able to see in peoples signatures how they have gone about managing lung Mets . My own mum used a surgical approach and that was three years ago .

Has the oncologist come up with a treatment plan for you ? I take it they will want to focus on the pelvic recurrence given your pain levels .

My mum has been navigating stage 4 disease for ten years. Getting a good treatment plan and team in place is a positive step .

Take care ,

Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

Achilles Torn
Posts: 116
Joined: Fri Dec 16, 2016 2:41 pm

Re: Totally in Shock Stage 2 to Stage 4 in 9 Months

Postby Achilles Torn » Sat May 25, 2019 12:23 pm

It is a horrible thing to face and there is no way to sugar coat it. That said it doesn’t have to be a death sentence. There are many treatment options that you haven’t tried that may work. It’s a bad hand to be dealt but it ain’t close to being over yet.
40 yo Male. BC Canada. Sigmoid Colectomy Dec. 2016
Pathology T3N2bM1 19 of 24 Nodes Positive + tumour deposits
PET scan - Para-Aortic and Iliac Lymph node spread. Stage VI.
Moderately differentiated. MSS. KRAS/BRAF Wild.
Mutations: TP53, ERBB4, MLL3, PDCD1LG2, PRKDC, SMAD3
FOLFOX Commenced Jan 9/2017 - Avastin(Bev) added after round 1.
June 2017 Dose Reduction on Round 11 due to Neuropathy.
Good PET Scan July 2017 - on maintenance 5FU/Bev every 2 weeks until progression.

Fluff Bottom
Posts: 73
Joined: Fri Oct 23, 2015 8:13 am

Re: Totally in Shock Stage 2 to Stage 4 in 9 Months

Postby Fluff Bottom » Sun May 26, 2019 7:28 am

Gloria, last May I had my yearly CT and it was all clear. In July I started having abdominal pain that I thought was a hernia. It ended up being new cancer on lungs, liver and peritoneum in only a couple of months. Went from Stage 3b to 4c. Back on chemo and was stable until two weeks ago when things began growing again and new stuff appeared. On new chemo now because FOLFOX caused a reaction and FOLFIRI no longer works.

I hope they find something that works for you ASAP. It doesn’t have to be a death sentence, lots of stage 4 folks on here living life with NED. Take care and keep us updated.
10/26/15-Colonoscopy-Mass in Sigmoid Colon
11/17/15 Surgery
Mass is adenocarcinoma with mucinous type components.Lynch Negative
Stage IIIb-T3N1c, 3/13 nodes, High Grade-Poorly Diff to Undiff
12/16/15-Port,began FOLFOX
CEA .8 before surgery
Finished 12 rounds of FOLFOX 5/22/16
5/22/18-Clear CT
9/6/18-CT for possible hernia shows mets
9/18/18 PET confirms mets to lungs, liver peritoneum
10/23/18-Chest CT shows rapid growth of mets

DarknessEmbraced
Posts: 3301
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Totally in Shock Stage 2 to Stage 4 in 9 Months

Postby DarknessEmbraced » Sun May 26, 2019 9:43 am

I'm so very sorry you'll dealing with this and I hope your chemo goes well!*hugs*
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18

Gloriamazz
Posts: 60
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Facebook Username: gloriamazz@ yahoo.com
Location: Ohio
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Re: Totally in Shock Stage 2 to Stage 4 in 9 Months

Postby Gloriamazz » Mon May 27, 2019 10:21 pm

Hi Stu,

Thank you so much for getting back to me. The holiday is pushing the board out a week to June 3, 2019 until then I don't know about treatment options. Every time I turn around it gets worse.

Aug 8 started with stage 2 with 0 nodes and 0 radiation treatment and 0 Chemo not needed.

Went to Feb. 3 no pelvic mass mentioned and radiologist saw 2 lung nodules to small to do anything. Just wait until Sept and have a CT

April started having more pain than usual Dr ordered CT for abdomen came back Recurrent disease and Biopsy ordered. Biopsy confirmed CT scan results.

I already had Oncologist in place and she ordered cat scan for lung nodules.

Alread had an appt with radiologist scheduled before results of lungs. Radiologist comes in talking about 2 new lung nodules making a total of 4. . . . Radiologist did not know that i didn't see or hear about lung results. .....so that threw out Chemo and radiation treatment.

Until board meets June 3, 2019 I am status quo.

I am in a lot of pain. The pain never went fully away . I am so upset from a short mo th frm stage 2 to stage 4.
June 29, 2018 Colonoscopy
found 3cm leision was biopsied came back as adenocarcinoma
Operated on August 8, 2018 Had APR removed Anus, Rectum and Sigmoid Colon
Have Barbie Butt and permanent Colostomy
March 5, 2019. Cat scan found 2 non specific lung nodules
Surgeon going to watch and repeat Cat Scan in 6 Months Sept. 10, 2019
April 29, 2019 HyperDense Liesion 1.8 x 1.8 cm

Gloriamazz
Posts: 60
Joined: Thu Jul 12, 2018 1:59 pm
Facebook Username: gloriamazz@ yahoo.com
Location: Ohio
Contact:

Re: Totally in Shock Stage 2 to Stage 4 in 9 Months

Postby Gloriamazz » Mon May 27, 2019 10:59 pm

Thank you for replying everyone,

I felt so alone and hopeless till I-read your posts. Before it was another day I wanted to thank you for giving me some hope,

I am on pain pills for the Recurrent abdominal tumor and keep falling asleep so I apologize if it took longer to respond.
:? 8) :lol: :| :wink: :evil: :twisted:
Last edited by Gloriamazz on Thu May 30, 2019 6:44 pm, edited 1 time in total.
June 29, 2018 Colonoscopy
found 3cm leision was biopsied came back as adenocarcinoma
Operated on August 8, 2018 Had APR removed Anus, Rectum and Sigmoid Colon
Have Barbie Butt and permanent Colostomy
March 5, 2019. Cat scan found 2 non specific lung nodules
Surgeon going to watch and repeat Cat Scan in 6 Months Sept. 10, 2019
April 29, 2019 HyperDense Liesion 1.8 x 1.8 cm

stu
Posts: 1132
Joined: Sat Aug 17, 2013 5:46 pm

Re: Totally in Shock Stage 2 to Stage 4 in 9 Months

Postby stu » Tue May 28, 2019 2:12 am

Hi ,
I was shocked at the angry I felt for my mum . She was asymptomatic and picked up on a Bowel screen . To hear surgery was off the table and chemo at that point was her only option was devastating. I kept thinking if only it had shown one little symptom, screened a few months earlier . With time and a good plan that quickly settled into focusing on treatment and solutions but the speed of change in her life was overwhelming. One minute fine and planning life to planning life saving treatment was dismantling.
However it was life saving treatment and once the chemo got going it did a powerful job . I wish the same for you.

Take care ,

Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

mandosquiddy
Posts: 32
Joined: Sat Oct 06, 2018 11:45 am
Location: Colorado
Contact:

Re: Totally in Shock Stage 2 to Stage 4 in 9 Months

Postby mandosquiddy » Tue May 28, 2019 2:02 pm

I am sorry you are dealing with this.

In April 2017 I had to have a portion of my sigmoid colon removed and it turned out to be cancer. I was Stage 2 but had a positive margin so did FOLFOX for 12 rounds. A month after that I started to have severe pain in my back and testicles. Turned out the positive margin (on the rectal side of things) had grown and spread despite the chemo (found this out on my 38th birthday! Note to self: Don't schedule onc appointments on your birthday). I then had radiation followed by another surgery that included interoperative radiation. One of my ureters had gotten tangled in the tumor so had some super fun urological stuff done that still presents some issues today. After that I felt pretty good but then a CEA marker came back high and something was discovered on the outside of my small bowel. So another surgery! That was about 8 months ago and so far no cancer has come back that we are aware of. 8 months might not seem long but the longer I go the more hope I have. At some point I may other fights to fight and the 8 months + will reset to zero but I'll go on trying to go even longer.

I guess I type all that mostly to say you are not alone in this and you just have to move forward through each step. Get angry, get sad, talk to a professional if you need to (I did). There are lots of battles along the way but at Stage 4 colon cancer is still very much beatable.
4/2017 DX: sigmoid colon cancer
colectomy/colostomy
stage II with one positive margin
5/2017 - 11/17 12 rounds of FOLFOX
11/17 - 12/17 Increase in back pain and testicular pain.
CEA increased, CT scan indicated mass on rectal portion of colon
1/18 - 2/18 25 rounds of radiation treatment
5/18 surgery, interoperative radiation, bladder/ureter modification
7/18 normal blood work and CT scan
9/18 increased CEA, mass on outside of small intestine
10/18 Debulking surgery/illeostomy
1/19 Ostomy reversal

Gloriamazz
Posts: 60
Joined: Thu Jul 12, 2018 1:59 pm
Facebook Username: gloriamazz@ yahoo.com
Location: Ohio
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Re: Totally in Shock Stage 2 to Stage 4 in 9 Months

Postby Gloriamazz » Tue May 28, 2019 3:00 pm

Hi mandosquiddy,

I am so sorry about your experience. It sounds like mine although I never felt well before or after the operation.
It was shocking I have regular colonoscopies the last one looked good then 7 months later was having stomach issues and doc would do test for cdiff, hpylori and could not find anything and Dr said I was fine, But I wasn't fine. Pain got worsen had Hemmroids and finally found a good surgeon.

Had another test this came up as colorectal cancer and said stage 2 cancer mass. Dr said best to. Remove anus, rectum and sigmoid colon and no need for chem or radiation. After 6 months had to
June 29, 2018 Colonoscopy
found 3cm leision was biopsied came back as adenocarcinoma
Operated on August 8, 2018 Had APR removed Anus, Rectum and Sigmoid Colon
Have Barbie Butt and permanent Colostomy
March 5, 2019. Cat scan found 2 non specific lung nodules
Surgeon going to watch and repeat Cat Scan in 6 Months Sept. 10, 2019
April 29, 2019 HyperDense Liesion 1.8 x 1.8 cm

Gloriamazz
Posts: 60
Joined: Thu Jul 12, 2018 1:59 pm
Facebook Username: gloriamazz@ yahoo.com
Location: Ohio
Contact:

Re: Totally in Shock Stage 2 to Stage 4 in 9 Months

Postby Gloriamazz » Wed May 29, 2019 2:05 am

DarknessEmbraced wrote:I'm so very sorry you'll dealing with this and I hope your chemo goes well!*hugs*

Hi Fluff Bottom all of the symptoms sound very familiar. It sounds like you are getting response from Chemo,
I have a lot of pain.. Did the chem lessen any pain you feel. I have non stop pain must be the tumor sitting on my siatica. I will chat later pain pill gets me confused and lose tract of what I am saying. May the lord keep his healing arms around you
Hugs bbnk,,
June 29, 2018 Colonoscopy
found 3cm leision was biopsied came back as adenocarcinoma
Operated on August 8, 2018 Had APR removed Anus, Rectum and Sigmoid Colon
Have Barbie Butt and permanent Colostomy
March 5, 2019. Cat scan found 2 non specific lung nodules
Surgeon going to watch and repeat Cat Scan in 6 Months Sept. 10, 2019
April 29, 2019 HyperDense Liesion 1.8 x 1.8 cm

Gloriamazz
Posts: 60
Joined: Thu Jul 12, 2018 1:59 pm
Facebook Username: gloriamazz@ yahoo.com
Location: Ohio
Contact:

Re: Totally in Shock Stage 2 to Stage 4 in 9 Months

Postby Gloriamazz » Wed May 29, 2019 12:15 pm

Fluff Bottom wrote:Gloria, last May I had my yearly CT and it was all clear. In July I started having abdominal pain that I thought was a hernia. It ended up being new cancer on lungs, liver and peritoneum in only a couple of months. Went from Stage 3b to 4c. Back on chemo and was stable until two weeks ago when things began growing again and new stuff appeared. On new chemo now because FOLFOX caused a reaction and FOLFIRI no longer works.

I hope they find something that works for you ASAP. It doesn’t have to be a death sentence, lots of stage 4 folks on here living life with NED. Take care and keep us updated.


Hi Fluff Bottom, Thinking about your new treatment and how it is working for you. Does it take a while to start or are their some results immediately.

I don't know my treatment as the Tumor Board doe not meet until next Monday, June 3rd. I am in a lot of pain and hope if what they come up takes away pain. I don’t
Know what to expect from the treatment. All I know is the pain is about A 7 at times with pain pills. The mass must be pushing on something.
June 29, 2018 Colonoscopy
found 3cm leision was biopsied came back as adenocarcinoma
Operated on August 8, 2018 Had APR removed Anus, Rectum and Sigmoid Colon
Have Barbie Butt and permanent Colostomy
March 5, 2019. Cat scan found 2 non specific lung nodules
Surgeon going to watch and repeat Cat Scan in 6 Months Sept. 10, 2019
April 29, 2019 HyperDense Liesion 1.8 x 1.8 cm

Fluff Bottom
Posts: 73
Joined: Fri Oct 23, 2015 8:13 am

Re: Totally in Shock Stage 2 to Stage 4 in 9 Months

Postby Fluff Bottom » Wed May 29, 2019 5:24 pm

Gloria, I definitely had less pain when the chemo was working. Once it stopped, the pain came back it seems like in just a few weeks. I start the infusion portion of my new treatment tomorrow. I’m doing Tafinlar+Mekinist+Vectibix.

I hope you can get some answers from the tumor board. Please keep us updated.
10/26/15-Colonoscopy-Mass in Sigmoid Colon
11/17/15 Surgery
Mass is adenocarcinoma with mucinous type components.Lynch Negative
Stage IIIb-T3N1c, 3/13 nodes, High Grade-Poorly Diff to Undiff
12/16/15-Port,began FOLFOX
CEA .8 before surgery
Finished 12 rounds of FOLFOX 5/22/16
5/22/18-Clear CT
9/6/18-CT for possible hernia shows mets
9/18/18 PET confirms mets to lungs, liver peritoneum
10/23/18-Chest CT shows rapid growth of mets

Gloriamazz
Posts: 60
Joined: Thu Jul 12, 2018 1:59 pm
Facebook Username: gloriamazz@ yahoo.com
Location: Ohio
Contact:

Re: Totally in Shock Stage 2 to Stage 4 in 9 Months

Postby Gloriamazz » Wed May 29, 2019 5:50 pm

Fluff Bottom wrote:Gloria, I definitely had less pain when the chemo was working. Once it stopped, the pain came back it seems like in just a few weeks. I start the infusion portion of my new treatment tomorrow. I’m doing Tafinlar+Mekinist+Vectibix.

I hope you can get some answers from the tumor board. Please keep us updated.


Hi FLUFF Bottom

I heard from Drs office she was able to sit with Board today. I have an appointment with Oncologist tomorrow at 10:00 am. I am very scared
June 29, 2018 Colonoscopy
found 3cm leision was biopsied came back as adenocarcinoma
Operated on August 8, 2018 Had APR removed Anus, Rectum and Sigmoid Colon
Have Barbie Butt and permanent Colostomy
March 5, 2019. Cat scan found 2 non specific lung nodules
Surgeon going to watch and repeat Cat Scan in 6 Months Sept. 10, 2019
April 29, 2019 HyperDense Liesion 1.8 x 1.8 cm

Fluff Bottom
Posts: 73
Joined: Fri Oct 23, 2015 8:13 am

Re: Totally in Shock Stage 2 to Stage 4 in 9 Months

Postby Fluff Bottom » Wed May 29, 2019 6:20 pm

Hang in there girl! Maybe search for some positive stories on all the Stage 4 people who are surviving and thriving. You’d be amazed at how many there are. I don’t blame you for being scared, I’m scared sometimes too. We are all in this mess together!

There are so many smart, compassionate people on this board that are always willing to help whenever they can.
10/26/15-Colonoscopy-Mass in Sigmoid Colon
11/17/15 Surgery
Mass is adenocarcinoma with mucinous type components.Lynch Negative
Stage IIIb-T3N1c, 3/13 nodes, High Grade-Poorly Diff to Undiff
12/16/15-Port,began FOLFOX
CEA .8 before surgery
Finished 12 rounds of FOLFOX 5/22/16
5/22/18-Clear CT
9/6/18-CT for possible hernia shows mets
9/18/18 PET confirms mets to lungs, liver peritoneum
10/23/18-Chest CT shows rapid growth of mets


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