It's come back - :(

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Jess83
Posts: 37
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 :)
2012 - Stage 1, 29 Australia
18mm Polyp - T1 NX M0
May 13 - TEMS procedure, Clear margins!!!
Dec 20 - 35mm tumor next to original resection
Stage 4 with met to adrenal gland
Jan 21 - Adrenal gland removed
3 rounds of FOLFOX
March 21 - 6 weeks of chemo/radiation
April/May 21 - 3 rounds FOLFOX
June 21 - ULAR, loop ileostomy & removal of ovaries - leak, drained, reoccurred, drained again.
August 21 - 6 rounds FOLFOX
November 21 - Clear PET Scan - NED!
December 21 - Ileostomy reversal

kandj
Posts: 314
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, 12+ liver Mets
HAI placed 12/15
Liver resect 5/19/2016 15-20 mets (surgeon lost count)
Liver Recurrence 7/2017-radiation
Lung met 10/18 VATS
lung/adrenal gland recurrence 11/19
Adrenal ablation 2/20 VATS 3/20
Radiation: 9/20 adrenal gland, 2/21 pancreatic node
9/2021 liver, 4/22 esophageal node
7/2023 proton therapy: liver
140+ rounds of chemo and counting
Chest nodes, lung nodules, and esophageal nodes currently.

PainInTheAss
Posts: 673
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: 37
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.
2012 - Stage 1, 29 Australia
18mm Polyp - T1 NX M0
May 13 - TEMS procedure, Clear margins!!!
Dec 20 - 35mm tumor next to original resection
Stage 4 with met to adrenal gland
Jan 21 - Adrenal gland removed
3 rounds of FOLFOX
March 21 - 6 weeks of chemo/radiation
April/May 21 - 3 rounds FOLFOX
June 21 - ULAR, loop ileostomy & removal of ovaries - leak, drained, reoccurred, drained again.
August 21 - 6 rounds FOLFOX
November 21 - Clear PET Scan - NED!
December 21 - Ileostomy reversal

Jess83
Posts: 37
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!!!
2012 - Stage 1, 29 Australia
18mm Polyp - T1 NX M0
May 13 - TEMS procedure, Clear margins!!!
Dec 20 - 35mm tumor next to original resection
Stage 4 with met to adrenal gland
Jan 21 - Adrenal gland removed
3 rounds of FOLFOX
March 21 - 6 weeks of chemo/radiation
April/May 21 - 3 rounds FOLFOX
June 21 - ULAR, loop ileostomy & removal of ovaries - leak, drained, reoccurred, drained again.
August 21 - 6 rounds FOLFOX
November 21 - Clear PET Scan - NED!
December 21 - Ileostomy reversal

Jess83
Posts: 37
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!!!!
2012 - Stage 1, 29 Australia
18mm Polyp - T1 NX M0
May 13 - TEMS procedure, Clear margins!!!
Dec 20 - 35mm tumor next to original resection
Stage 4 with met to adrenal gland
Jan 21 - Adrenal gland removed
3 rounds of FOLFOX
March 21 - 6 weeks of chemo/radiation
April/May 21 - 3 rounds FOLFOX
June 21 - ULAR, loop ileostomy & removal of ovaries - leak, drained, reoccurred, drained again.
August 21 - 6 rounds FOLFOX
November 21 - Clear PET Scan - NED!
December 21 - Ileostomy reversal

DarknessEmbraced
Posts: 3816
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! :)

Jess83
Posts: 37
Joined: Sun Dec 02, 2012 7:06 am

Re: It's come back - :(

Postby Jess83 » Tue Jan 26, 2021 9:05 am

Hi all! Just wanted to give a little update.
On Jan 8th I had surgery to remove my adrenal gland - pathology has since confirmed that the tumor was a secondary cancer to my rectum (bugger!) but they were able to remove it in once prince with clear margins.
It was about 4.5cm in the end.
Recovery from the surgery has been great, it was all done by keyhole so I was discharged the next day.
I have now started FOLFOX. Had my first cycle on the 20th. Got through it relatively unscathed- the cold sensitivity is definitely strange - I had to have everything warmer than room temp. That lasted about 3 days and has settled down now (thankfully as it’s summer here in Oz and it was 38 the other day!)
The plan is to do another 2 FOLFOX cycles and then move to radiation/chemo.
Would really love to reach out to any other Aussies on here (especially Victorians)
Take care all and thanks for your support! :)
2012 - Stage 1, 29 Australia
18mm Polyp - T1 NX M0
May 13 - TEMS procedure, Clear margins!!!
Dec 20 - 35mm tumor next to original resection
Stage 4 with met to adrenal gland
Jan 21 - Adrenal gland removed
3 rounds of FOLFOX
March 21 - 6 weeks of chemo/radiation
April/May 21 - 3 rounds FOLFOX
June 21 - ULAR, loop ileostomy & removal of ovaries - leak, drained, reoccurred, drained again.
August 21 - 6 rounds FOLFOX
November 21 - Clear PET Scan - NED!
December 21 - Ileostomy reversal

claudine
Posts: 809
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: It's come back - :(

Postby claudine » Tue Jan 26, 2021 11:02 am

Glad the surgery went well! Good luck with oxaliplatin. Watch out for sign of neuropathy, that's a nasty thing. We did not know enough about it and now my husband has it permanently in his feet... But if you're only getting 3 cycles you should be ok!
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary

Tumors: L4 04/18; left adrenal gland & small lung nodules 03/19
rectum 02/22 (pT3 pN0 stage 2A); L3 09/22

Surgeries: intestinal resect. 05/18 (no cancer - Crohn's); adrenalectomy 02/20
L3-L4-L5 fusion and corpectomy 05/20; LAR 04/22; ileo reversal 09/22
L2-L3 fusion and corpectomy 09/22

Treatments: EBRT 04/18; SBRT 02/19; Failed adjuvant Xelox ; Folfiri/Avastin 03/19 - 01/20
adjuvant chemorad (Xeloda) 06/22; SBRT 11/22; Xeloda/Avastin since 01/24

Jess83
Posts: 37
Joined: Sun Dec 02, 2012 7:06 am

Re: It's come back - :(

Postby Jess83 » Tue Jan 26, 2021 4:49 pm

Claudine wrote:Glad the surgery went well! Good luck with oxaliplatin. Watch out for sign of neuropathy, that's a nasty thing. We did not know enough about it and now my husband has it permanently in his feet... But if you're only getting 3 cycles you should be ok!


Thanks Claudine. Yes, I’m very on to the neuropathy signs, the oncologist has said to tell them at any sign of numbness. So far I only had tingles and they stopped within 24hrs.
Does your husband’s neuropathy make it hard for him to walk?
2012 - Stage 1, 29 Australia
18mm Polyp - T1 NX M0
May 13 - TEMS procedure, Clear margins!!!
Dec 20 - 35mm tumor next to original resection
Stage 4 with met to adrenal gland
Jan 21 - Adrenal gland removed
3 rounds of FOLFOX
March 21 - 6 weeks of chemo/radiation
April/May 21 - 3 rounds FOLFOX
June 21 - ULAR, loop ileostomy & removal of ovaries - leak, drained, reoccurred, drained again.
August 21 - 6 rounds FOLFOX
November 21 - Clear PET Scan - NED!
December 21 - Ileostomy reversal

claudine
Posts: 809
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: It's come back - :(

Postby claudine » Tue Jan 26, 2021 4:52 pm

Does your husband’s neuropathy make it hard for him to walk?


No fortunately, it's not that bad - just constant, low-grade pain. He did 6 cycles and it started getting bad at the 4th, but he didn't want to complain :roll:
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary

Tumors: L4 04/18; left adrenal gland & small lung nodules 03/19
rectum 02/22 (pT3 pN0 stage 2A); L3 09/22

Surgeries: intestinal resect. 05/18 (no cancer - Crohn's); adrenalectomy 02/20
L3-L4-L5 fusion and corpectomy 05/20; LAR 04/22; ileo reversal 09/22
L2-L3 fusion and corpectomy 09/22

Treatments: EBRT 04/18; SBRT 02/19; Failed adjuvant Xelox ; Folfiri/Avastin 03/19 - 01/20
adjuvant chemorad (Xeloda) 06/22; SBRT 11/22; Xeloda/Avastin since 01/24

Markdale
Posts: 107
Joined: Wed Dec 02, 2020 4:45 pm

Re: It's come back - :(

Postby Markdale » Fri Jan 29, 2021 6:22 am

Jess83 wrote:Hi all! Just wanted to give a little update.
On Jan 8th I had surgery to remove my adrenal gland - pathology has since confirmed that the tumor was a secondary cancer to my rectum (bugger!) but they were able to remove it in once prince with clear margins.
It was about 4.5cm in the end.
Recovery from the surgery has been great, it was all done by keyhole so I was discharged the next day.
I have now started FOLFOX. Had my first cycle on the 20th. Got through it relatively unscathed- the cold sensitivity is definitely strange - I had to have everything warmer than room temp. That lasted about 3 days and has settled down now (thankfully as it’s summer here in Oz and it was 38 the other day!)
The plan is to do another 2 FOLFOX cycles and then move to radiation/chemo.
Would really love to reach out to any other Aussies on here (especially Victorians)
Take care all and thanks for your support! :)


Hey Jess,

Fellow Victorian here. Glad your recovery is going well. I’m about to do my 6th round of folfoxiri. Ive found that keeping my fluid levels up helps a lot, it’s hard to do but you have to force yourself sometimes.

Do you have a surgery date planned for your primary yet?
09/20:Diagnosed after colonoscopy for bleeding.
MRI and ct scan confirmed tumor at rectosigmoid junction aswell as lung nodules in RLL (1X1.2cm) and RUL (3X.5cm)
10/20: LAR tumour t3n2m1 4/24 lymph nodes.
11/20: pet scan confirmed Mets
11/20: folfoxiri - 10/6/21. 12 rounds in total
1/1/21 thoracotomy 1 met removed
2/2022 sabr to 2 lung nodule
09/22 PET scan progression of sabr’d nodules
10/22 phase 1 trial bispecific antibody
9/23 added pd1 blocker
12/23 bilateral VATS all visible (7) lesions removed

Jess83
Posts: 37
Joined: Sun Dec 02, 2012 7:06 am

Re: It's come back - :(

Postby Jess83 » Fri Jan 29, 2021 8:47 am

Hi Mark!
Thanks for the fluid advice, I was just saying to my hubby tonight that i need to concentrate on my water intake over the next few days ready for Tuesday’s chemo. It’s so hard to drink the warm water during treatment!!!!
No date planned as yet, I’m seeing my surgeon on Monday afternoon for a debrief. It’s looking like I’ll start chemo/radiation at the end of February for 5 weeks so I’m guessing surgery might be May?.....
Are you being treated in Melbourne?
How are you going with your chemo? Do you have many rounds to go?
2012 - Stage 1, 29 Australia
18mm Polyp - T1 NX M0
May 13 - TEMS procedure, Clear margins!!!
Dec 20 - 35mm tumor next to original resection
Stage 4 with met to adrenal gland
Jan 21 - Adrenal gland removed
3 rounds of FOLFOX
March 21 - 6 weeks of chemo/radiation
April/May 21 - 3 rounds FOLFOX
June 21 - ULAR, loop ileostomy & removal of ovaries - leak, drained, reoccurred, drained again.
August 21 - 6 rounds FOLFOX
November 21 - Clear PET Scan - NED!
December 21 - Ileostomy reversal

DarknessEmbraced
Posts: 3816
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 29, 2021 11:47 am

I'm glad your surgery went well. :) 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
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

Markdale
Posts: 107
Joined: Wed Dec 02, 2020 4:45 pm

Re: It's come back - :(

Postby Markdale » Fri Jan 29, 2021 4:01 pm

Jess83 wrote:Hi Mark!
Thanks for the fluid advice, I was just saying to my hubby tonight that i need to concentrate on my water intake over the next few days ready for Tuesday’s chemo. It’s so hard to drink the warm water during treatment!!!!
No date planned as yet, I’m seeing my surgeon on Monday afternoon for a debrief. It’s looking like I’ll start chemo/radiation at the end of February for 5 weeks so I’m guessing surgery might be May?.....
Are you being treated in Melbourne?
How are you going with your chemo? Do you have many rounds to go?

Hi,
I’m being treated publicly through the Monash health, had my surgery at the Dandenong hospital. I was really happy with the outcome of the operation the surgeon was great.
This will be the last planned round before I have ct to see the if anything else has popped up. I’m hoping the the chemo is working against the cancer as my potential met had disappeared by round 3.
Yeah warm water is hard to drink, I was drinking a lot green teas to keep the fluid levels up. Also ondansetron and metoclopramide I take regularly even if I’m not that nauseous seems to stop the nausea getting out of control and it’s easier than chasing the nausea.
09/20:Diagnosed after colonoscopy for bleeding.
MRI and ct scan confirmed tumor at rectosigmoid junction aswell as lung nodules in RLL (1X1.2cm) and RUL (3X.5cm)
10/20: LAR tumour t3n2m1 4/24 lymph nodes.
11/20: pet scan confirmed Mets
11/20: folfoxiri - 10/6/21. 12 rounds in total
1/1/21 thoracotomy 1 met removed
2/2022 sabr to 2 lung nodule
09/22 PET scan progression of sabr’d nodules
10/22 phase 1 trial bispecific antibody
9/23 added pd1 blocker
12/23 bilateral VATS all visible (7) lesions removed


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