New member - scared & looking for tips

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Claudine
Posts: 397
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: New member - scared & looking for tips

Postby Claudine » Thu Jan 09, 2020 1:51 pm

Malidosa, from what I've been able to gather, well or moderately differentiated cancer cells tend to spread slower than poorly differentiated cells; differentiation level is based on cell aspect under the microscope. So it's good that your cells are moderately differentiated!

https://www.cancer.org/treatment/unders ... colon.html
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT 04/18, SBRT 02/19
Resect small intestine 05/18 (no cancer - Crohn's)
Failed adjuvant Xelox
Folfiri + Avastin 03/19 to 01/20
6.7 cm left adrenal mass 03/19, successful resection 02/20
CEA since 03/19: high 58, low 3.2, now 4.4
Scan 03/19: Multiple small lung nodules up to 5mm
Scan 12/19: one 1mm stable nodule
PET 04/20 uptake by L4
L3-L4-L5 fusion surgery and residual tumor removal 05/20

CF_69
Posts: 105
Joined: Sat Dec 22, 2018 9:44 pm

Re: New member - scared & looking for tips

Postby CF_69 » Thu Jan 09, 2020 3:18 pm

Malidosa,

My siblings also got checked because of me, as did my parents. They found and removed 3 polyps in one of them. Not cancer, but that’s how a lot of tumours get started.

I know it’s probably hard to see it right now, but whatever they found in your brother would have grown for god knows how long. It being found now is a really good thing.
47 at diagnosis
Rectosigmoid junction
Adenocarcinoma
2.8 x 1.8 x 3.5 cm
G2
T3N0M0
CEA:
December 2018 - 1.9
September 2019 - 2.5
March 2020 - 2.3
September 2020 - 2.5
Xeloda / radiation x 25
Laparoscopic LAR April 2019
0 of 12 nodes
Stage 2A
4 cycles of adjuvant Xeloda
MRI on liver for 2mm hypodensity not suspicious.
Clear CT - September 2019

Malidosa
Posts: 35
Joined: Sun Dec 29, 2019 11:15 pm

Re: New member - scared & looking for tips

Postby Malidosa » Fri Jan 10, 2020 4:05 pm

So I spoke with my surgeon again today. I'm still having the pains in my rectum that started this whole ordeal. Based on my description she seems positive its a fissure. Has anyone had one of these? Literally the most painful thing I've ever experienced in my life. If you have ANY tips they would be greatly appreciated!!!! She gave me Calmoseptine cream and I'm getting a special compounded cream specially made from a compounding pharmacy. But until then I guess I have to sit here in pain. (no pain meds for a week as my surgery is on Thursday :-( )
Dx - Cecum mass - age 35
Stage 1 (T2, N0, M0) - CEA level - 0.5
26 nodes negative
Right Colectomy 1/16/20
Currently investigating a 3.2 cm adrenal mass

retiredteacher
Posts: 115
Joined: Sat Oct 21, 2017 1:34 pm

Re: New member - scared & looking for tips

Postby retiredteacher » Sat Jan 11, 2020 1:43 pm

Hi Malidosa, Sorry you have to be here, but it the best place for questions and support. Fissure - I did have one which was overlooked by my first GI doc and first surgeon, but identified by my second surgeon. (Changed surgeons in the middle of treatment and was very happy with my second.) Incredibly painful. Having it fixed made a world of difference. You may have better luck because yours has been found early and it sounds like you have good pain management advice -- but nothing much worked for me except the Rx codeine based painkillers. Did your surgeon indicate she would repair it when you undergo surgery?
RC F 63 9/17
Adeno 7 cm MSS G2 PET
T3N0M0
2.5K Cap/RT x 25
"Near complete response" PET 1/18
CEA 0.5 10/17, 0.6 10/18
MRI 2/18 yT2N0 12 cm fr AV 3 cm
LAR 2/18 yT1N0M0 0/21 G1 0.3 cm
CAPEOX 3/18, reduced to 80% at cycle 3
Completed 4 cycles; stopped, gut issues, liver enzymes
CT/ colonoscopy 11/18 NED
4/19 NED Sacral fractures/osteoporosis
"Caregiver" to the Iron Man
Hubby CRC Stage 3 2004 NED, Small Cell Lung Cancer Limited 2011 NED, Non-small Cell Lung Cancer 2019 NED October 2019

Malidosa
Posts: 35
Joined: Sun Dec 29, 2019 11:15 pm

Re: New member - scared & looking for tips

Postby Malidosa » Sat Jan 11, 2020 9:41 pm

retiredteacher wrote:Hi Malidosa, Sorry you have to be here, but it the best place for questions and support. Fissure - I did have one which was overlooked by my first GI doc and first surgeon, but identified by my second surgeon. (Changed surgeons in the middle of treatment and was very happy with my second.) Incredibly painful. Having it fixed made a world of difference. You may have better luck because yours has been found early and it sounds like you have good pain management advice -- but nothing much worked for me except the Rx codeine based painkillers. Did your surgeon indicate she would repair it when you undergo surgery?


So far she hasn’t brought up any type of surgery to treat it. She’s wanting me to stick with creams, sits baths and soft stools. Hoping it will work soon cause by far this fissure is the most painful thing I’ve ever experienced.

She did say she would take a peek at it right before the surgery. Hopefully to spare me the pain. Cause when I went to the ER for the initial pain they gave me a rectal exam that I thought was literally splitting me in half! Only to be told it’s “hemorrhoids”.

It just feels like a topic you don’t hear about much so I was starting to panic thinking how can I be in so much pain and no one ever talk about this. Apparently they are commonly misdiagnosed. I saw 6 different doctors before getting to my surgeon and she saying that’s what it is she says she’s seen the pain take down grown men.

But now mentally I don’t even know where to be about this whole cancer diagnoses cause it’s the pain from the fissure that generated all the looking. So I’m sort of in a state of omg how long could I have gone undiagnosed if I never had this pain? Scary thought to think about cause other than the pain I’d say I was relatively symptom-less. The whole thing is crazy.
Dx - Cecum mass - age 35
Stage 1 (T2, N0, M0) - CEA level - 0.5
26 nodes negative
Right Colectomy 1/16/20
Currently investigating a 3.2 cm adrenal mass

Supportivechild
Posts: 24
Joined: Thu Dec 26, 2019 12:45 am

Re: New member - scared & looking for tips

Postby Supportivechild » Sun Jan 12, 2020 11:32 am

Malidosa wrote:
retiredteacher wrote:Hi Malidosa, Sorry you have to be here, but it the best place for questions and support. Fissure - I did have one which was overlooked by my first GI doc and first surgeon, but identified by my second surgeon. (Changed surgeons in the middle of treatment and was very happy with my second.) Incredibly painful. Having it fixed made a world of difference. You may have better luck because yours has been found early and it sounds like you have good pain management advice -- but nothing much worked for me except the Rx codeine based painkillers. Did your surgeon indicate she would repair it when you undergo surgery?


So far she hasn’t brought up any type of surgery to treat it. She’s wanting me to stick with creams, sits baths and soft stools. Hoping it will work soon cause by far this fissure is the most painful thing I’ve ever experienced.

She did say she would take a peek at it right before the surgery. Hopefully to spare me the pain. Cause when I went to the ER for the initial pain they gave me a rectal exam that I thought was literally splitting me in half! Only to be told it’s “hemorrhoids”.

It just feels like a topic you don’t hear about much so I was starting to panic thinking how can I be in so much pain and no one ever talk about this. Apparently they are commonly misdiagnosed. I saw 6 different doctors before getting to my surgeon and she saying that’s what it is she says she’s seen the pain take down grown men.

But now mentally I don’t even know where to be about this whole cancer diagnoses cause it’s the pain from the fissure that generated all the looking. So I’m sort of in a state of omg how long could I have gone undiagnosed if I never had this pain? Scary thought to think about cause other than the pain I’d say I was relatively symptom-less. The whole thing is crazy.


My mother was constipated for 1 week and then noticed bleeding. No pain at all. I'm glad we didn't chalk it all up as the bleeding was simply because she was straining too much due to the constipation. We were told after the colonoscopy that It was actually the mass that was bleeding. It's terrible that you're in so much pain but I know you're thankful. I have to schedule an appointment with my doctor to determine when I should get my first colonoscopy. My oldest sister turns 40 this year and my mothers surgeon said she should get checked now.

Jay
Caregiver of mother 56
12-13-19 DX Rectal Cancer
5 CM Mass
T1N1M0
2 suspicious lymph nodes 7x4mm 5x3 mm
Abdomen/Pelvis CT
MRI Rectal Screening
Chest CT
PET SCAN


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