It's come back - :(

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Jess83
Posts: 25
Joined: Sun Dec 02, 2012 7:06 am

Re: It's come back - :(

Postby Jess83 » Thu Dec 24, 2020 3:34 am

Thanks for all your replies! I really appreciate it. Have today received a new plan of attack - adrenal gland is going to be removed prior to chemo.
The endocrinologist now involved said there is a small chance it’s actually a benign growth. She can remove it by keyhole surgery and then we can get it tested to see what it is.
The oncologist still thinks it’s a met but they don’t want to start systemic chemo and then find out it wasn’t.
So I’m now having surgery on the 8th of Jan.

Thanks Bill, we are definitely putting a port in, will make life much easier. I’ll definitely ask about the amount of sessions- so far they have only mentioned 6 sessions, but it all depends now on what this mass is......

It’s Xmas eve here in Australia so I just wanted to wish you all a Merry Xmas! Thanks again! Jess :)
Stage 1 - 29 yo in Australia
Diagnosed whilst pregnant
18mm Polyp - T1 NX M0
May 13 - TEMS procedure - Clear margins!!!
Feb 14 - Had a baby!
June 14 - clean colonoscopy & PET
June 15 - clean sigmoidoscopy & PET
July 17 - clean colonoscopy
August 19 - clean colonoscopy
Dec 2020 - It's back :( 35mm tumor next to original resection
Confirmed Stage 4 with met to adrenal gland
Surgery to remove adrenal gland/tumor scheduled for 8th Jan

kandj
Posts: 306
Joined: Sun Sep 27, 2015 11:29 am

Re: It's come back - :(

Postby kandj » Wed Dec 30, 2020 5:55 pm

Jess83 wrote:Thanks for all your replies! I really appreciate it. Have today received a new plan of attack - adrenal gland is going to be removed prior to chemo.
The endocrinologist now involved said there is a small chance it’s actually a benign growth. She can remove it by keyhole surgery and then we can get it tested to see what it is.
The oncologist still thinks it’s a met but they don’t want to start systemic chemo and then find out it wasn’t.
So I’m now having surgery on the 8th of Jan.

Thanks Bill, we are definitely putting a port in, will make life much easier. I’ll definitely ask about the amount of sessions- so far they have only mentioned 6 sessions, but it all depends now on what this mass is......

It’s Xmas eve here in Australia so I just wanted to wish you all a Merry Xmas! Thanks again! Jess :)



either way that is good news. Getting those things cut out and tossed in the incinerator after they check them out is always my preferred method. As to your earlier question my DH has not missed having most of his adrenal gland fried (His is still there because he had ablation and radiation done). the only issues he had with it acting up was during the ablation. Definitely agree with Claudine that you are a-ok with just the one. Heck, you can have none too. That requires more meds though.
wife to DH, dx 8/15 stage IV @36, numerous unresectable liver Mets
resection and HAI placed 12/15
Liver resect 5/19/2016 15-20 mets (surgeon lost count, but it hopeful he got it all!)
Recurrence 7/2017 4 Liver mets and one possible lung met
Radiation on liver Mets 12/17
Lung met 10/18
VATS on lung met 11/18 started xeloda
Chemo break 6/19-11/19 lung/adrenal gland recurrence 11/19
Adrenal ablation2/20 Robotic Assisted VATS 3/20 Xeloda again
9/2020 SBRT on Adrenal Met 11/2020 New liver met to deal with

PainInTheAss
Posts: 668
Joined: Tue Jul 02, 2013 3:08 am

Re: It's come back - :(

Postby PainInTheAss » Thu Dec 31, 2020 1:41 am

Jess83 wrote:Hi All,
It's been a long time since I have posted.
Life has been cruising along for the past 6 years, running around after a energetic 6 year old, working and just enjoying life.
And now it's all come to a crashing halt again because after almost 8 years, my cancer has come back.
What we thought would most likely be a hemorrhoid has actually turned out to be a cancerous 35mm growth right next to my original TEMS resection.
They scariest part is I had a clean scope in August 2019.
So I'm now on the roller-coaster of tests and meeting, working out a treatment plan.
They are thinking I have lymph node involvement so most likely at Stage 3.
Met my radiologist on Friday and will meet my oncologist on Monday.
Just hoping some of you might be able to provide some advice on what kind of questions I should be asking my treatment team?
Is there anything you know now that you wish you have know when you started treatment?
Trying to be positive but I am crapping my past!!!!
Appreciate any help you can offer :)


So sorry it's back. If you never had chemo the first time, there's a chance that you have weakass cancer that will just all die. That's what I had. I had a lymph node light up near my sacrum that could not be removed via surgery, and they said I was as close to stage IV as you could get and still be a stage III. They wanted to wait and see if chemo would get rid of it and it did. Weak cancer means that the cancer cells are programmed for cell death.

If they do radiation first, that will be the big test. They check the tissue during the surgery and if most of the cells or all of them (complete response) are dead because of the radiation, you have a really good chance of being cured (because you had weakass cancer!). I had trace cancer cells left during my surgery, so my oncologist was really confident I would be cured. It helps a lot to believe you will be cured until you get proof otherwise. Don't deny reality, but don't live life based on worst-case scenarios. Stage IV weakass cancer can still be cured.
47yo single mom of 4 (24, 21, 18, 16) at Dx
6/13 - RC T4b IIIc 5LNs on PET CEA 5.4
8/13 - Finish chemorad
10/13 - APR/hyst+ovaries/perm colostomy 2/12 nodes+
6/14 - Finish Xelox 6 rds
1/15 - CT clear CEA 0.2
10/15 - CT/MRI clear CEA 0.7
4/16 - CT clear
10/16 - CT/MRI clear CEA 0.6
5/17 - PET clear? Follow up MRI to verify inflammation

Jess83
Posts: 25
Joined: Sun Dec 02, 2012 7:06 am

Re: It's come back - :(

Postby Jess83 » Thu Dec 31, 2020 5:45 am

.
Last edited by Jess83 on Thu Dec 31, 2020 5:49 am, edited 1 time in total.
Stage 1 - 29 yo in Australia
Diagnosed whilst pregnant
18mm Polyp - T1 NX M0
May 13 - TEMS procedure - Clear margins!!!
Feb 14 - Had a baby!
June 14 - clean colonoscopy & PET
June 15 - clean sigmoidoscopy & PET
July 17 - clean colonoscopy
August 19 - clean colonoscopy
Dec 2020 - It's back :( 35mm tumor next to original resection
Confirmed Stage 4 with met to adrenal gland
Surgery to remove adrenal gland/tumor scheduled for 8th Jan

Jess83
Posts: 25
Joined: Sun Dec 02, 2012 7:06 am

Re: It's come back - :(

Postby Jess83 » Thu Dec 31, 2020 5:49 am

PainInTheAss wrote:
So sorry it's back. If you never had chemo the first time, there's a chance that you have weakass cancer that will just all die. That's what I had. I had a lymph node light up near my sacrum that could not be removed via surgery, and they said I was as close to stage IV as you could get and still be a stage III. They wanted to wait and see if chemo would get rid of it and it did. Weak cancer means that the cancer cells are programmed for cell death.

If they do radiation first, that will be the big test. They check the tissue during the surgery and if most of the cells or all of them (complete response) are dead because of the radiation, you have a really good chance of being cured (because you had weakass cancer!). I had trace cancer cells left during my surgery, so my oncologist was really confident I would be cured. It helps a lot to believe you will be cured until you get proof otherwise. Don't deny reality, but don't live life based on worst-case scenarios. Stage IV weakass cancer can still be cured.



I love this way of thinking of it! Yes, hopefully it is a weakass cancer and it can be destroyed!!!
I am trying super hard to believe I can be cured. Both my surgeon and oncologist are very confident so that gives me hope that this can be overcome. The thought of leaving my 6 year old is unbearable so I will do whatever I can to kick cancers ass!!!!!

It’s New Years Eve here in Australia so I’m finishing on 2020 by getting a bit drunk - I figure it can’t do anything to me now - he he!!!
Stage 1 - 29 yo in Australia
Diagnosed whilst pregnant
18mm Polyp - T1 NX M0
May 13 - TEMS procedure - Clear margins!!!
Feb 14 - Had a baby!
June 14 - clean colonoscopy & PET
June 15 - clean sigmoidoscopy & PET
July 17 - clean colonoscopy
August 19 - clean colonoscopy
Dec 2020 - It's back :( 35mm tumor next to original resection
Confirmed Stage 4 with met to adrenal gland
Surgery to remove adrenal gland/tumor scheduled for 8th Jan

Jess83
Posts: 25
Joined: Sun Dec 02, 2012 7:06 am

Re: It's come back - :(

Postby Jess83 » Thu Dec 31, 2020 5:55 am

kandj wrote:either way that is good news. Getting those things cut out and tossed in the incinerator after they check them out is always my preferred method. As to your earlier question my DH has not missed having most of his adrenal gland fried (His is still there because he had ablation and radiation done). the only issues he had with it acting up was during the ablation. Definitely agree with Claudine that you are a-ok with just the one. Heck, you can have none too. That requires more meds though.



I am definitely happy about getting it out too - I feel better that it’s removed now rather than waiting to see if it responded to chemo!

Bring on the 8th of Jan!!!!
Stage 1 - 29 yo in Australia
Diagnosed whilst pregnant
18mm Polyp - T1 NX M0
May 13 - TEMS procedure - Clear margins!!!
Feb 14 - Had a baby!
June 14 - clean colonoscopy & PET
June 15 - clean sigmoidoscopy & PET
July 17 - clean colonoscopy
August 19 - clean colonoscopy
Dec 2020 - It's back :( 35mm tumor next to original resection
Confirmed Stage 4 with met to adrenal gland
Surgery to remove adrenal gland/tumor scheduled for 8th Jan

DarknessEmbraced
Posts: 3545
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: It's come back - :(

Postby DarknessEmbraced » Fri Jan 01, 2021 8:03 pm

I hope when it's removed they will find out it's benign.*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
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)


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