New and husband just diagnosed

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Re: New and husband just diagnosed

Postby Rainykatie » Tue Sep 26, 2017 2:28 pm

Hi prayingof3,

Looking at the results you just posted, I'm not a medical doctor and just a layperson so it's difficult to say. To me it looks like they need to do an MRI to say for sure whether or not the cancer has metastasized, but again I don't really understand the terminology. Have you met with the oncologist to have the results explained?

I do know that spots can show up that are not cancer, my mom had spots on her lungs show up and they were labeled "watch" as well. It was kind of freaky, but then by her next scan they had gone away and the doctor said it was probably just related to a cold.

I know it can be scary to watch a cancer patient's energy go down. Before my mom started treatment, she was very very ill with symptoms from the cancer. I wondered how anyone in her condition could start treatment. But she started chemo anyway, since her blood work was good. After 2-3 treatments, her energy returned since the tumors began to shrink. Now after 8 rounds of FOLFOX she is really energetic, almost back to normal. She's able to eat and exercise normally. I know it seems counterintuitive based on all of the stigma around chemo, but in her case chemo really helped alleviate the painful symptoms she was experiencing.

I saw earlier your husband was wondering about working. My mom's oncologist told her that many people work throughout FOLFOX, with the exception of a day or two off at a time during their weakest days. My mom is retired so it's not an issue for her, but the doctor was trying to alleviate our concerns about the severity of symptoms. Still, I would imagine my mom could have managed some days of work in there if need be. She has been able to even watch my two very energetic preschool-age children now and again! Of course- everybody responds differently to treatment and with some surgery as part of your husband's treatment plan I'm sure some time off will likely be appropriate.

I'm sorry you are going through this, I know first hand how tough it is. Glad you found this place!
Caregiver to my mom (73)
Dx Stage IV w/ liver, bone mets 4/14/17
Folfox started 4/25/17 - 8 rounds
Took a 6 week break to check some things off the bucket list - great response from chemo - everything shrunk and liver tumors virtually gone
CT scan 9/2017 showed spread to ovaries- laparoscopic surgery at MSK
Resumed Folfox 10/23/17 - 1 round
Surgery to remove primary tumor due to discomfort, 11/7/17. Trouble with recovery, numerous mets to abdomen area found
Passed 12/5/17

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Joined: Mon Apr 24, 2017 7:26 am

'Nodules' and 'lung thingies'

Postby JJH » Wed Sep 27, 2017 3:54 am

prayingof3 wrote:..If anyone could shed anymore light on these results, please do! Thanks again!

All I can say is that the term 'nodule' seems to be a catch-all term that the doctors use whenever they see someting on the scan but they don't have the foggiest idea what it is. If they knew what it was they would use a more accurate term like cyst, atelectasis, hemangioma, etc.

I think you just have to wait until they do a test or type of scan that will give more definite information. Meanwhile, try not to worry if they are just talking about 'nodules' and 'lung thingies'.
"The darkest hour is just before the dawn" - Thomas Fuller (1650)

Posts: 273
Joined: Thu Mar 16, 2017 12:33 pm

Re: New and husband just diagnosed

Postby Basil » Wed Sep 27, 2017 4:28 am

I had a spot on my liver that they ordered a MRI with contrast to investigate further. Turned out to be a hemangioma, harmless.
40 y/o male (now 43), kids 9 & 12
Dx 3/16/17, rectal cancer s3,t3,n1,m0
PROSPCT trial (FOLFOX in lieu of chemorad)
FOLFOX 4/5/17 - 6/26/17
LAR 7/31/17, temp ileo
pathological complete response
Adjuvant chemo cancelled (IDEA Study)
Ileo reversed 9/25/17
1 year scans - clear
2 year scans - clear
3 year scans - clear

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Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: New and husband just diagnosed

Postby susie0915 » Wed Sep 27, 2017 8:40 am

I have a small 4mm nodule in my long that was seen in the May, 2017 scan. My oncologist is certain it's scarring of inflammation but is monitoring. I had a repeat scan July that showed no change. Dr. said cancer can double in size in 3-4 months. Too small to biopsy and too small for pet scan to pick up. So we have to wait and see if it grows.

Your husband's nodules could've been there for years caused by and infection in the past. He will be watched for any changes. There are some characteristics that a!low the radiologist suspect cancer and would be stated in report. Right now they don't know.
Last edited by susie0915 on Thu Sep 28, 2017 11:45 am, edited 1 time in total.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only scar tissue left
8/15 PET scan NED
9/15 LAR
0/24 nodes
10/15 blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 C 4mm lung nod
10/17 pel/abd CT NED
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, CT pel/abd/lung NED
11/18 CEA .6
5/19 CT NED, CEA <.5
10/19 Clear colonscopy
11/19 CEA <.5

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Joined: Sun Sep 10, 2017 12:22 pm

Re: New and husband just diagnosed

Postby prayingof3 » Thu Sep 28, 2017 9:16 am

Thanks for the replies!! Several of you have asked about the oncologist. Well, we don't have one yet. Apparently the way they do things around here is you start with the colorectal surgeon first and they stage you after surgery and then you are sent to the oncologist after. The colorectal surgeon right now is the one ordering all the scans and giving us the results. I don't know how comfortable I feel with that, but apparently this is the way they do it. I would rather have already met with an oncologist beforehand.

And thanks to all of you that replied about his CT results. I'm being positive and trying to think that the spots found on liver and lungs will turn out to be nothing! His MRI is scheduled for Friday, so hoping we get results for the liver later that day. And it is looking like the surgeon will be scheduling his surgery after getting these results and he also said that even if that turns out to be cancer in the liver that he will also remove it during surgery. So this is good news right?

Honestly, I am trying so hard to stay positive for my husband and my kids, but this is taking a toll on me for sure. My heart goes out to all of you and your families that are dealing with this! Thanks again so much for the support on this board and I will continue to update as I get information.
Caregiver to husband age 49-stage IV
09/17: Colonoscopy and mass found at rectal sigmoid junction partial obstruction
10/17: Laparoscopic LAR surgery
10/17: Pathologic staging from surgery pT4a N1c with 4 tumor deposits, perineural invasion present,14/14 lymph nodes negative, clear margins, moderately-differentiated
11/17: PET scan performed-lesions found in liver and lungs
11/17: Met confirmed to liver
11/17: Restaged to stage IV
11/17: Started FOLFOX-Avastin
12/17: Confirmed KRAS G12V

Posts: 301
Joined: Mon Apr 24, 2017 7:26 am

Your signature

Postby JJH » Thu Sep 28, 2017 10:10 am

Here is a link to a signature template. You can use this to set up a signature for summarizing the main points of.your DH's diagnosis, staging, etc.
"The darkest hour is just before the dawn" - Thomas Fuller (1650)

Posts: 301
Joined: Mon Apr 24, 2017 7:26 am

Questions to ask

Postby JJH » Thu Sep 28, 2017 10:44 am

prayingof3 wrote: I want to learn as much as I can before we see the doctor so that I will half way understand what they are talking about and know what questions to ask...

Here is a link for some questions to ask the doctor/oncologist:
"The darkest hour is just before the dawn" - Thomas Fuller (1650)

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