Please help, input needed

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Ulendon
Posts: 50
Joined: Thu Nov 28, 2019 12:36 pm
Facebook Username: Amira A Sofer

Re: Please help, input needed

Postby Ulendon » Thu Dec 05, 2019 11:18 am

Got the last of the lab and biopsy results.

CEA was normal (3.2)
MSI testing was done and came back intact.
Biopsy confirmed adenocarcinoma
DNA mismatched repair testing was normal.

Tomorrow morning I see the surgeon who is doing a sigmoidoscopy. To check things out herself I guess.

I don't really have an option to take much time off work. So whatever treatment plan we come up with needs to take that into account.
43 F
DX: RC
Tumor Location: Mid
Type: Adenocarcinoma
Tumor size: 5cm
Tumor Grade: T3b
Clinical: Stage IIIC (cT3, cN2b, cM0)
Suspicious local regional lymph nodes and 1 Extramesorectal lymph node
CEA 3.2 12/4/19
Margins: clear
MSI: intact

11/25/19 colonoscopy
12/2/19 MRI
12/3/19 CT: no evidence of distant spread
12/6/19 Surgery consult: LAR
12/11/19 Oncology: RX: Xeloda, Radiation x28
12/13/19 Radiation Oncology consultation, scan, tattoos

12/26/19-2/5/19 Xeloda, Radiation x28

Punky44
Posts: 438
Joined: Mon Oct 01, 2018 4:29 pm

Re: Please help, input needed

Postby Punky44 » Thu Dec 05, 2019 12:09 pm

Like Jacques mentioned above, there is a short course radiation option that you may be a candidate for (I believe they told my mom she qualified because the cancer had not spread through the fascia?

Anyway, it was 5 days vs 5 weeks and she said it was by far the easiest part of her treatment. She went into surgery the next day.

Not sure if you mentioned this already, but where are you located?
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17
T3N2M0
Total neoadjuvant therapy:
8 rounds Folfox 11/5/18 - 2/11/19
Short course radiation 3/14/19 - 3/20/19
Robotically assisted laparoscopic LAR 3/21/19
Pathology report says yT2N0M0 with 0/38 nodes
CEA 2.1; 1.9; 2.6; 2.8
6/28/19 Reversal and port out
10/22/19: CT showed new nodules
1/28/20: CT showed nodules shrinking

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

Claudine
Posts: 336
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Please help, input needed

Postby Claudine » Thu Dec 05, 2019 12:56 pm

So far my husband has been able to work normally through all the treatments he's had (well, except from recovering from surgery, of course). Radiation made his tired and nauseated for a few hours, and he's in pretty bad shape the afternoon after chemo, but he's got a flexible job so he's been able to rest; and get back to work the next day. How flexible is yours?
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT radiation 04/18, SBRT 02/19
Resection small intestine 05/18 (no cancer found - 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 7.6
Scan 03/19: Multiple small lung nodules up to 5mm
Scan 12/19: one 1mm stable nodule
PET 04/20 small uptake by L4
L3-L4-L5 fusion surgery and residual tumor removal 05/20

User avatar
Jacques
Posts: 579
Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

Re: Please help, input needed

Postby Jacques » Fri Dec 06, 2019 12:07 am

Ulendon wrote:... I don't really have an option to take much time off work. So whatever treatment plan we come up with needs to take that into account.

For your meeting with your surgeon in the morning, you could ask about your overall treatment calendar. Your staging now is set at T3bN2M0, or Stage III-C. For this level of rectal cancer, the treatment plan is relatively fixed once they determine your overall risk level and the type of treatment regimen they want to pursue.

Typically, the overall treatment for a Stage III rectal cancer patient would last about 10 months overall, and for you it would probably look something like this:

November: Diagnosis and staging.
December-January: Long-course chemo/radiation.
February: One month of rest/recuperation
March: Laparoscopic LAR surgery, ileostomy surgery followed by rest & recuperation
April -July: Four months of first-line adjuvant chemotherapy.
August: Rest and recuperation followed by ileostomy reversal surgery
September: Start of the 5-year surveillance period

However, it would probably be the oncologist (not the surgeon) who would finalize your overall treatment plan. And this is where you might want to seek a second opinion to confirm that the final overall treatment plan is in fact the best one for you. (You could get a second opinion about this at UCSF, for example, but this would require that you have all of your Kaiser medical records consolidated and organized and ready to submit to them. BTW, the people at UCSF know your surgeon. Her name is listed in the directory there.)

For now, you can ask the surgeon what she thinks., but eventually you will have to have a proper medical team headed by an oncologist.

When is Kaiser going to assign an oncologist to your case?

Ulendon
Posts: 50
Joined: Thu Nov 28, 2019 12:36 pm
Facebook Username: Amira A Sofer

Re: Please help, input needed

Postby Ulendon » Fri Dec 06, 2019 6:05 pm

I had the ultrasound yesterday because of the fibroid they found in my uterus and this morning went to the surgery consult. It's looks like the treatment plan is just as you described Jacques.

When I got home I returned the calls from the OBGYN who wants to do an endometrial biopsy. Apparently my endometrium is too thick. I'm not really clear on it but it sounds like endometrial cancer can go hand in hand with other cancers?

It's confusing because I mentioned to the surgeon that I had had the internal ultrasound yesterday and she didn't seem interested.

And oncologist appointment scheduled for next Wednesday.
43 F
DX: RC
Tumor Location: Mid
Type: Adenocarcinoma
Tumor size: 5cm
Tumor Grade: T3b
Clinical: Stage IIIC (cT3, cN2b, cM0)
Suspicious local regional lymph nodes and 1 Extramesorectal lymph node
CEA 3.2 12/4/19
Margins: clear
MSI: intact

11/25/19 colonoscopy
12/2/19 MRI
12/3/19 CT: no evidence of distant spread
12/6/19 Surgery consult: LAR
12/11/19 Oncology: RX: Xeloda, Radiation x28
12/13/19 Radiation Oncology consultation, scan, tattoos

12/26/19-2/5/19 Xeloda, Radiation x28

Ulendon
Posts: 50
Joined: Thu Nov 28, 2019 12:36 pm
Facebook Username: Amira A Sofer

Re: Please help, input needed

Postby Ulendon » Sat Dec 07, 2019 4:45 pm

Thanks so much for this, for some reason putting dates to it (accurate or not) helps!

"November: Diagnosis and staging.
December-January: Long-course chemo/radiation.
February: One month of rest/recuperation
March: Laparoscopic LAR surgery, ileostomy surgery followed by rest & recuperation
April -July: Four months of first-line adjuvant chemotherapy.
August: Rest and recuperation followed by ileostomy reversal surgery
September: Start of the 5-year surveillance period"
43 F
DX: RC
Tumor Location: Mid
Type: Adenocarcinoma
Tumor size: 5cm
Tumor Grade: T3b
Clinical: Stage IIIC (cT3, cN2b, cM0)
Suspicious local regional lymph nodes and 1 Extramesorectal lymph node
CEA 3.2 12/4/19
Margins: clear
MSI: intact

11/25/19 colonoscopy
12/2/19 MRI
12/3/19 CT: no evidence of distant spread
12/6/19 Surgery consult: LAR
12/11/19 Oncology: RX: Xeloda, Radiation x28
12/13/19 Radiation Oncology consultation, scan, tattoos

12/26/19-2/5/19 Xeloda, Radiation x28

Ulendon
Posts: 50
Joined: Thu Nov 28, 2019 12:36 pm
Facebook Username: Amira A Sofer

Re: Please help, input needed

Postby Ulendon » Thu Dec 12, 2019 12:47 pm

Saw the oncologist yesterday afternoon and he said it would be 28 sessions of radiation along with Xeloda. Seeing the radiation doctor tomorrow morning.
Last edited by Ulendon on Thu Dec 12, 2019 9:31 pm, edited 1 time in total.
43 F
DX: RC
Tumor Location: Mid
Type: Adenocarcinoma
Tumor size: 5cm
Tumor Grade: T3b
Clinical: Stage IIIC (cT3, cN2b, cM0)
Suspicious local regional lymph nodes and 1 Extramesorectal lymph node
CEA 3.2 12/4/19
Margins: clear
MSI: intact

11/25/19 colonoscopy
12/2/19 MRI
12/3/19 CT: no evidence of distant spread
12/6/19 Surgery consult: LAR
12/11/19 Oncology: RX: Xeloda, Radiation x28
12/13/19 Radiation Oncology consultation, scan, tattoos

12/26/19-2/5/19 Xeloda, Radiation x28

User avatar
Jacques
Posts: 579
Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

Re: Please help, input needed

Postby Jacques » Thu Dec 12, 2019 5:23 pm

Ulendon wrote:Saw the oncologist yesterday afternoon and he said it would be 28 sessions of radiation along with Xeloda. Seeing the radiation doctor tommorow morning.

For your radiation treatments, will you be able to do them locally, or will you have to go to the main Kaiser hospital every day?

If you're going to be taking Xeloda, you can do some preparatory reading now on self care tips and the prevention of hand foot syndrome:

How to tackle Xeloda side effects
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=61932&p=490294#p490294

Ulendon
Posts: 50
Joined: Thu Nov 28, 2019 12:36 pm
Facebook Username: Amira A Sofer

Re: Please help, input needed

Postby Ulendon » Thu Dec 12, 2019 9:25 pm

The closest radiation center is 45 minutes away. So I am going to have to drive there and back every morning before going to work. I have an appointment there tomorrow morning and hopefully will know more after that.
43 F
DX: RC
Tumor Location: Mid
Type: Adenocarcinoma
Tumor size: 5cm
Tumor Grade: T3b
Clinical: Stage IIIC (cT3, cN2b, cM0)
Suspicious local regional lymph nodes and 1 Extramesorectal lymph node
CEA 3.2 12/4/19
Margins: clear
MSI: intact

11/25/19 colonoscopy
12/2/19 MRI
12/3/19 CT: no evidence of distant spread
12/6/19 Surgery consult: LAR
12/11/19 Oncology: RX: Xeloda, Radiation x28
12/13/19 Radiation Oncology consultation, scan, tattoos

12/26/19-2/5/19 Xeloda, Radiation x28

User avatar
Jacques
Posts: 579
Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

Re: Please help, input needed

Postby Jacques » Thu Dec 12, 2019 11:50 pm

Ulendon wrote:The closest radiation center is 45 minutes away. So I am going to have to drive there and back every morning before going to work. I have an appointment there tomorrow morning and hopefully will know more after that.

You might want to go to a medical supply store to see if you can find some sort of cushion to use in the car. It might help with the 45 minute commute.

Also, look for some sort of bidet or spray-gun attachment so that you can use water instead of toilet paper for cleaning.
Last edited by Jacques on Fri Dec 13, 2019 12:25 am, edited 1 time in total.

Carboxo
Posts: 9
Joined: Sat Nov 02, 2019 5:10 pm

Re: Please help, input needed

Postby Carboxo » Thu Dec 12, 2019 11:55 pm

Hang in there, breathe and get your best friend, family, loved ones there to help you. You don’t have to do this alone.
DS: caregiver
42, female
DX: RC, Adenocarcinoma
G2: Moderately differentiated
pT1N1bM0 Stage IIIA
Positive lymph’s:, 2/15
Baseline CEA value 2.5
Tumor invades submucosa
Perineural invasion (PNI) present
Surgical margins: clear
MSS,KRAS/BRAF status: WT
LAR robotic, colectomy, with Ileostomy 9/4/19
Radiation therapy (if any): Chemo/rad scheduled next
Chemotherapy:XELODA,CAPEOX, started 10/28/19

boxhill
Posts: 516
Joined: Fri Apr 06, 2018 11:40 am

Re: Please help, input needed

Postby boxhill » Fri Dec 13, 2019 9:44 am

Make sure you discuss/inform yourself about vaginal dilators and their use BEFORE starting radiation. Read the threads here on women and radiation. Judging by the experience of most other women, do not depend on your doctors to fully inform you on vaginal stenosis, preserving fertility, early onset menopause, etc.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
Neulasta 6/28
7/18 CT NED
11/18 CT NED
12/18 MRI 5mm liver mass, 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: many fails before Celebrex helps
12/23/19 CT stable

Ulendon
Posts: 50
Joined: Thu Nov 28, 2019 12:36 pm
Facebook Username: Amira A Sofer

Re: Please help, input needed

Postby Ulendon » Fri Dec 13, 2019 4:29 pm

Came to the appointment at the radiation therapy center and the earliest appointment they had available for the mapping was after Xmas so I'm hanging around till 2pm to get it done today. I don't want to wait! It looks like the earliest I can start actual treatment will be December 26.

Currently sitting in the parking lot drinking a grand Chai latte to fill up my bladder.
43 F
DX: RC
Tumor Location: Mid
Type: Adenocarcinoma
Tumor size: 5cm
Tumor Grade: T3b
Clinical: Stage IIIC (cT3, cN2b, cM0)
Suspicious local regional lymph nodes and 1 Extramesorectal lymph node
CEA 3.2 12/4/19
Margins: clear
MSI: intact

11/25/19 colonoscopy
12/2/19 MRI
12/3/19 CT: no evidence of distant spread
12/6/19 Surgery consult: LAR
12/11/19 Oncology: RX: Xeloda, Radiation x28
12/13/19 Radiation Oncology consultation, scan, tattoos

12/26/19-2/5/19 Xeloda, Radiation x28

User avatar
juliej
Posts: 3106
Joined: Thu Aug 05, 2010 12:59 pm

Re: Please help, input needed

Postby juliej » Fri Dec 13, 2019 4:33 pm

Ulendon wrote:Currently sitting in the parking lot drinking a grand Chai latte to fill up my bladder.

That's an excellent way to fill your bladder! I love Chai lattes. :D

Be calm, take a deep breath, you can do this!

Juliej
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 12/18/2019, CEA<1

Ulendon
Posts: 50
Joined: Thu Nov 28, 2019 12:36 pm
Facebook Username: Amira A Sofer

Re: Please help, input needed

Postby Ulendon » Wed Feb 19, 2020 3:19 pm

Radiation/chemo completed and robot assisted LAR surgery date set for April first :lol:

I've been watching lots of surgery videos and trying to figure out the stoma thing. I'm a bit concerned about what the heck I am supposed to eat. No fruits and veggies!?! I'm not a vegetarian but I don't eat a ton of meat, mostly seafood. I really need to loose weight so have been eating a fruit and veggie rich diet. Not sure what to do while I have the ileostomy.
43 F
DX: RC
Tumor Location: Mid
Type: Adenocarcinoma
Tumor size: 5cm
Tumor Grade: T3b
Clinical: Stage IIIC (cT3, cN2b, cM0)
Suspicious local regional lymph nodes and 1 Extramesorectal lymph node
CEA 3.2 12/4/19
Margins: clear
MSI: intact

11/25/19 colonoscopy
12/2/19 MRI
12/3/19 CT: no evidence of distant spread
12/6/19 Surgery consult: LAR
12/11/19 Oncology: RX: Xeloda, Radiation x28
12/13/19 Radiation Oncology consultation, scan, tattoos

12/26/19-2/5/19 Xeloda, Radiation x28


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