New to the club we never wanted to join...

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Readerokie
Posts: 3
Joined: Wed May 13, 2020 6:12 am

New to the club we never wanted to join...

Postby Readerokie » Wed May 13, 2020 6:34 am

2 days ago my husband (38) went to the ER for pain, bloating, 2 months of gradually increasing symptoms - all the usual suspects. 2 hours later they told him he had a 10cm mass in his upper left colon causing a blockage (unsure if it's in the splenic flexure or descending colon). Yesterday they operated and removed about 1-1.5 feet of his colon. The surgeon said it looked like cancer. It was an open partial colectomy, and we're very grateful that despite forgoing the usual prep she was able to close him up without a temporary colostomy. CT scans and surgical exam showed the mass had grown through the wall and adhered to some fat, but not into surrounding organs or other structures, and no sign of spread elsewhere. I'm desperately hoping when the lab work comes back the lymph nodes are clear.

I've spent 2 days with Dr Google and lots of medical studies, following every rabbit hole to its end. A lot of the good info I found was here. Thank you all for that.

I'm struggling with 3 things right now:

How reliable are the initial CT scans and surgical findings? Can we be reasonably confident it hasn't spread? Or am I just fooling myself thinking the surgeon might have got it all, and a specialist will cut the legs out from under me?

How much stock should I put in survival rates, given that they mostly refer to older patients and my husband is young and healthy?

We've been trying for a second kid for about a year. I'd assumed the problem was with me and my 39-year-old ovaries. Could the tumor have affected his fertility even before surgery and treatment? And is there any hope it will improve after surgery? I know we may bank sperm before he undergoes any chemo, but if it's poor quality then I'm not optimistic about our chances. It feels petty to think about that right now though, and I'm struggling with it. But I don't want this to be something cancer steals from us.

Mostly I just want him home and himself again. He's in so much pain right now from the surgery.
5/20 Urgent surgery, blockage.Tumor, upper left colon. 9cc. G2. Adenocarcinoma. Clear margins.
5/20 Dx Stage 3b. T3N1aM0. 1/15 lymph nodes.

stu
Posts: 1343
Joined: Sat Aug 17, 2013 5:46 pm

Re: New to the club we never wanted to join...

Postby stu » Wed May 13, 2020 12:25 pm

Welcome ,

Although we would prefer for you both not to be here we are glad you reached out to us .
Firstly great news that he is safely through surgery and the tumour was operable . Another positive the surgeon saw nothing of concern and they have a right good look around while they are in there . So that only leaves microdisease and that is a situation common to all here . So there are a lot of positives there to start with .
In terms of the reliability of the CT scan it is certainly part of the process to collect a full picture and the PET scan is also of benefit. However anything my mum had was picked up first on CT scan . ( there are some though to be fair ) however the CT scans have become so sophisticated in recent years . Back when my mum started this process the Met has to be at least 5 mm and now they have picked things up from 2 mm and watched them grow until a PET scan was possible. So there is room for hope .

It is certainly true that a lot of bowel cancer is detected in the elderly community who may not proceed to treatment depending on their other health issues . Caught early it is very treatable .

I have absolutely no idea about the fertility part but we have had people who have gone on to have babies and what a joy that is !

The way I handled the situation was to not work out with the current evidence . That is the science you have been given and there is no evidence at this point in time that there is any spread . Onwards to recovery and the next step in the process .

It is fantastic that you are getting informed from reliable sources . It really helped me prepare my mind , keep informed and realistic about all aspects of this situation .

I wish him a smooth recovery .
Take care ,
Stu
Last edited by stu on Wed May 13, 2020 4:11 pm, edited 1 time in total.
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 .

Gravelyguy
Posts: 300
Joined: Thu Jul 05, 2018 6:03 pm

Re: New to the club we never wanted to join...

Postby Gravelyguy » Wed May 13, 2020 1:10 pm

Welcome Readerokie,

But sorry you guys are here at the same time. I think Stu said it well and I have no info about fertility either. I would only add that an MRI might be in order. MRI does a better job of identifying liver tumors than a CT.

Like Stu said, I think it is great that they were able to do surgery and the surgeon and the scans did not show any spread. That is very good news in an otherwise tough time!

Dave
6/17 dx mRC t3n1m1 very low rectal tumor 2 liver Mets 1.3 cm and .9 cm

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection LAR with coloanal anastomosis (no rectum left)
11/17-3/18 8 rounds Folfox
6/18 still NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear
12/12/18 clear scans, CEA .9 still NED!
6/11/19 clear scans CEA 1.0
12/19/19 clear scans CEA 1.0 still NED!

Basil
Posts: 268
Joined: Thu Mar 16, 2017 12:33 pm

Re: New to the club we never wanted to join...

Postby Basil » Wed May 13, 2020 8:07 pm

This was me three years ago. I was stage 3 and treated for 4.5 months with chemo and surgery, summarily discharged from treatment because additional treatment would be “overkill” and have been NED ever since.

I will note that one of my favorite cancer nights was dr. Googling and getting hits to this site, and seeing scores of posters who had normal questions/concerns from years ago but who no longer were active. Those folks for the most part beat it and have left this place in the dust.

It’s a wonderful community but one I hope you have reason to leave.
40 y/o male, kids 8&11
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
NED
1 year scans - clear
2 year scans - clear

JJH
Posts: 290
Joined: Mon Apr 24, 2017 7:26 am

Re: New to the club we never wanted to join...

Postby JJH » Wed May 13, 2020 11:27 pm

Readerokie wrote:...
I'm struggling with 3 things right now:

  1. How reliable are the initial CT scans and surgical findings? Can we be reasonably confident it hasn't spread? Or am I just fooling myself thinking the surgeon might have got it all, and a specialist will cut the legs out from under me?
    .
  2. How much stock should I put in survival rates, given that they mostly refer to older patients and my husband is young and healthy?
    .
  3. Could the tumor have affected his fertility even before surgery and treatment? And is there any hope it will improve after surgery?

Welcome to the Forum.

To respond to your three questions, briefly:

  1. CT scans and other clinical findings are usually accurate, but they all have limitations related to the precision of the method used. The more accurate data for the tumor itself and the regional lymph node area is found in the pathology report based on direct examination of the tumor cells and related tissues. You will soon receive the pathology report from the surgery, and this is the report that will have the greatest amount of detail about the cancer and its potential for spreading. When you receive this report, you should analyze it thoroughly and then update your signature with the details.
  2. You should not spend too much time looking at statistics. Most of these statistics are macro-level statistics based on groups of patients averaging around 69 years of age. For these databases, your DH is an 'outlier' in the distribution and he is not well represented by the statistics. All he really needs to know is that the average recovery rate for Stage III patients who have completed the adjuvant therapy regimen is well above 50%, so he can rest assured that the odds are strongly in his favor.
  3. I do not have any information on fertility issues
"The darkest hour is just before the dawn" - Thomas Fuller (1650)

User avatar
horizon
Posts: 1535
Joined: Tue Apr 12, 2011 10:10 pm

Re: New to the club we never wanted to join...

Postby horizon » Fri May 22, 2020 3:40 pm

Readerokie wrote:How much stock should I put in survival rates, given that they mostly refer to older patients and my husband is young and healthy?


None! I caused myself so much anguish and worry when I was where he is at by looking at statistics. Like you said, the average age of getting CRC is much, much higher than his age. Sorry you're both going through this. I did almost ten years ago and I'm still here.
I'm just a dude who still can't believe he had a resection and went through chemo (currently 8 years NED). Is this real life?

Rock_Robster
Posts: 495
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: New to the club we never wanted to join...

Postby Rock_Robster » Fri May 22, 2020 8:56 pm

I can share a bit of my experience on the fertility side. I was diagnosed with stage 4 rectal cancer at 36 years old. Before I started treatment I froze some sperm, and then had chemotherapy, pelvic radiation, and several surgeries.

After I finished treatment earlier this year, I did a semen analysis and my sperm count was zero. This was apparently most likely due to the radiation as it’s way tougher on that area than chemo, but the chemo may have also contributed. I was told however there is a chance that sperm production an recover in 6-12 months, especially if only chemo was done.

My wife and I have been considering IVF, and had my previous stored sperm tested. The count was very good (300 million), but the quality fairly poor - the ‘morphology’ (shape) of the sperm is normally >15% normal, and mine was only 1%. The fertility doc speculated this may have been because I had cancer and was under a lot of stress at the time. So on this basis she doesn’t recommend we try insemination, but IVF is fine as they only need a few good speed, and even at 1% that means my sample still has 3 million decent ones.

So I would definitely suggest freezing sperm before treatment, but it’s only chemo then I think there’s still a decent chance of recovering some fertility.

Good luck,
Rob
Male 38; Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+. 4 liver mets
pT3N1aM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0, Mar-20=2.2, May-20=1.9.
11/18 FOLFOX x6
3/19 Liver resection
5/19 25x pelvic VMAT radiation; complete metabolic response
07/19 ULAR (robot), temp ileo, 1/27 LN
08/19 Missed a liver spot
08-11/19 FOLFOX x1, FOLFOXIRI x1, FOLFIRI x5
12/19 Liver resection #2
02/20 Ileostomy reversed
03/20 PET & MRI = NED!

Readerokie
Posts: 3
Joined: Wed May 13, 2020 6:12 am

Re: New to the club we never wanted to join...

Postby Readerokie » Tue May 26, 2020 9:02 pm

Thank you all so much for the encouragement and information! The stories in here were the first real hope I found after his diagnosis. He's now 2 weeks out from surgery and doing great. I've found a doctor at a regional NCI-accredited hospital for a second opinion, and have been reading up on the latest standard of care for Stage 3 (4x CAPOX).
5/20 Urgent surgery, blockage.Tumor, upper left colon. 9cc. G2. Adenocarcinoma. Clear margins.
5/20 Dx Stage 3b. T3N1aM0. 1/15 lymph nodes.


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