A Question for Caregivers

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stu
Posts: 1613
Joined: Sat Aug 17, 2013 5:46 pm

Re: A Question for Caregivers

Postby stu » Mon May 21, 2018 5:47 pm

Hi ,
You might want to read the American Cancer Society ‘s guidelines on staging . It describes the tumour as having grown through the bowel wall and into the visceral peritoneal lining under t4 ( there was another number but I have not transferred that information!) . Stage 4 is under M for spread to distant lymph nodes or organ . So I really would speak to his Doctor . I am no doctor but that’s how I am reading it .
Have a look for yourself as you have the paper work but I don’t think he is .
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 .

jep
Posts: 260
Joined: Sun Jun 11, 2017 7:45 pm
Location: New England, USA

Re: A Question for Caregivers

Postby jep » Mon May 21, 2018 8:10 pm

Yes, I have experienced similar emotional breakdowns....I actually cried every day on my ride to work and then again on my ride home for at least a few months while my husband was going through chemo....I'm a school teacher so I try not to bring my problems to work, but I also have 2 little girls at home and I don't want them to worry....the car is a great place to cry...We're in an ok place right now, but I'm always on edge....always....I find that exercise really helps...long walks with the dog or bike rides to clear the head....take good care of yourself too!
-jep
Stage IV CC 5/16/17
Loc: recto-sig
Type: Adenocarcinoma
Size: 7.4 cm
Grade: G3
TNM: T3N2M1
LNs: 8/20
BL CEA: .9
LVI: present
Perineural invasion: present
LAR margins: clear (w/in microns)
Folfox (8/17-1/18)
Scope 6/18 - CLEAR! - 2 polyps
PET 10/17/18: 3 pos LNs
Irino + Vecti (11/18)
CEA: 1.7 (2/19)
Xel + rad (5/19)
Surgery: 8/21/19 (aborted)
P1 Trial 10/19 - 12/19
Bypass 12/6/19
Folfox + vecti 1/2/19 - 4/3/20
Kid Fail 5/1/20
Folfiri + Avastin 5/20 - 6/20
bypass 6/29/20
Stivarga 7/18/20 -
Home 9/10/20

WarriorSpouse
Posts: 220
Joined: Tue Aug 16, 2016 9:02 pm

Re: A Question for Caregivers

Postby WarriorSpouse » Mon May 21, 2018 10:10 pm

I am sorry if I caused additional angst... Not intended to do so.

-I would specifically ask about staging based on the tumor pathology.
-long term treatment and surveillance plan to ensure the treatment plan is working.
-Getting a second opinion, maybe at John Hopkins in Baltimore, MD.
*Other major cancer centers mentioned often here are Dana Farber (Boston), Sloan Kettering (NYC) and MD Anderson (Houston).

Other posters here may know of a major cancer center affiliate located closer to Richmond, VA. At these major centers they do tumor pathology reviews, compare national treatment plans (based on the evidence found), and will write aggressive treatment plans for your local general oncology unit to follow closer to home.

If it is diagnosed as Stage IV, make sure he is treated as such and it is documented for insurance coverage. I say this because it will provide a more aggressive treatment plan and will qualify him potentially for Social Security Disability benefits, if needed. If SS disability is approve, regardless of age, he can qualify for Medicare, which can help you with his insurance coverage. Do not be afraid of the Staging number. As someone else has previously stated here, it is based on the pathology and identified spread of the disease. Make sure it is staged correctly because that dictates the correct treatment plan and what insurance will cover and his qualification for SS Disability / Medicare.

Good luck at tomorrows appointment. There are many here who will provide support and direction if asked.
Please let us know if you have any questions.
WS
D/H 47 years old, 10/2014, Stage IV M/CRC, nodes 12/15, para-aortic, 5 cm sigmoid resection, positive Virchow. KRAS mut, MSS, Highly Differentiated, Lynch Neg, 5FU/LV and Avastin 1 YR (Oxi for 5 months), Zeloda/Bev since 01/2016. 02/2019 recurrence para-nodes, back to 5FU/LV Oxy/Bev. It is working again. "...Perseverance is not a long race; it is many short races one after the other."-Walter Elliot

mpbser
Posts: 953
Joined: Wed Apr 19, 2017 11:52 am

Re: A Question for Caregivers

Postby mpbser » Tue May 22, 2018 5:38 pm

crikklekay

Something like that used to happen to me on a regular basis. At a couple of points, I had total meltdowns. Things got to their absolute worst when my husband had his liver surgery, my brother (who was like my son) was killed in a hit and run, and I had an extremely high stakes career issue all happen within a few weeks of each other. On top of all that, my husband was ignoring me, while I had consistently been his caretaker for about a year at that point, and I was getting fearful about my own health issues. I had a nervous breakdown and almost separated just so I could give myself the care that I needed. I wasn't able to do it all and something had to give. Things have improved a little, but not a ton. I sure can relate to your post.
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

crikklekay
Posts: 142
Joined: Thu Feb 15, 2018 9:47 am
Location: Richmond, VA

Re: A Question for Caregivers

Postby crikklekay » Wed May 23, 2018 11:00 am

Sorry WarriorSpouse, it's just that holding onto a few things have helped to keep me grounded. It's like a mantra or running verbal rosary beads through my fingers: The goal is to cure, they got it all with good margins, he's only stage 3, all scans are clear. Whenever something calls these into question I fall apart a little, like when they found spots on his lung scan and we weren't sure if they were from the MSSA or cancer; thankfully a recent scan showed a clear set of lungs which was an immense relief. So hearing he might be stage 4 shook my foundation a little. I know from reading stories on here there are a lot of people who were/are stage 4 and are doing well or have been NED for a while (like Stu's Mom), but the statistics for stage 3 are slightly better so I've been holding onto that as every little advantage helps.

We did go over a few things at the appointment yesterday and I was able to ask a few questions but they were mainly about his health and the new symptoms he has been dealing with after the last round. His CEA is in the normal range and all his blood work looks good so far so the plan is to continue being aggressive with his treatment. Folfox 6 was chosen since it's the standard mop-up chemo treatment and she has upped the dosage since "he's young and can handle it" to give him the best chance of cleaning it all out. No Avastin because it has not spread anywhere else. (I guess he's technically NED since all scans are clean since surgery?) He hasn't had a complete colonoscopy yet due to stoma complications but he's scheduled for one next month that will hopefully be clear.

I did ask about staging and she said he's stage 3 because it had spread to lymph nodes but not surrounding tissue or organs. I also looked up the staging info on the American Cancer Society site and according to it, based on the pathology information I have, he is Stage 3C T4a N2a M0.

The idea that he may be incorrectly staged makes me want to scream, cry and puke all at the same time, thinking we've spent the last 5 months heading in the wrong direction. But now I don't think I can sleep unless I get someone else to look at it just in case. The VCU Massey Cancer Center is a NCI designated cancer center, I'm not sure if that counts as a major cancer hospital but it's a much easier trip than Johns Hopkins so maybe we'll start there.

Jep I did find that spending an entire Sunday morning working in the yard made it difficult to worry about much other than not falling over from the heat, haha. Like Canada777 suggested I actually used to do yoga but when we purchased our house we couldn't afford the gym membership anymore. I was looking into finding a lower-cost gym with yoga classes right before all this happened. Ironic, I was going to spend this year trying to get my own health on track but have been focusing on my husband's health instead. He has always been the healthy one, that's one reason why his sickness and then diagnosis hit us so hard.

Mpbser your response really hit close to home. If dealing with my DH cancer isn't bad enough, the company I work for has hit a sudden downturn and if it doesn't improve I may not have a job in the near future. I'm the main breadwinner and our savings took a huge hit because of the medical bills, so the thought of being laid off is definitely adding to the anxiety and stress. My own health problems are not doing well under the load so I can definitely relate. I'm sorry to hear your time has been so difficult, I hope things continue to improve for you.
Caring for DH John
Stage IIIC, Lymph nodes: 6/22
Chemo: FOLFOX (6)
12/17 ER and emergency surgery
02/18 Hospital w/MSSA infected port, PICC line inserted, chest CT scan showed septic emboli & blood clots
03/18 Hospital w/CDIFF
08/18 CT Scan Clear, NEMD
2018/2019/2021 Colonoscopy Clear
2019/2020/2021/2022 CT Scan Clear
2021 PET scan & MRI show one spot on liver
08/21 Liver surgery to remove spot, confirmed mCRC. Now Stage IV
09/21 Start Folfiri + Avastin
03/22 CEA Rise, continuing chemo

stu
Posts: 1613
Joined: Sat Aug 17, 2013 5:46 pm

Re: A Question for Caregivers

Postby stu » Wed May 23, 2018 4:22 pm

Hi ,
Honestly there is no mistaking it when they tell you it’s stage 4 . It’s delivered hard and fast so you fully understand it .
He is doing really well and aiming for cure . Hold onto that and keep it foremost in your thoughts . Before you know it he will be putting distance between his diagnosis and his life .
Take special 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 .


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