New and husband just diagnosed

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prayingof3
Posts: 10
Joined: Sun Sep 10, 2017 12:22 pm

Re: New and husband just diagnosed

Postby prayingof3 » Wed Sep 13, 2017 2:26 pm

He has an appointment in the morning with the colorectal surgeon. From what I understand this doctor will do further tests and scans and also do the staging. I'm so worried but ready to have more information.
Caregiver to husband age 49
09/08/17: Colonoscopy and mass found at rectal sigmoid junction partial obstruction
10/10/17: Laparoscopic LAR surgery
10/19/17: Pathologic staging from surgery pT4a N1c with 4 tumor deposits, perineural invasion present,14/14 lymph nodes negative, clear margins, moderately-differentiated

Joannerogers
Posts: 246
Joined: Tue Jun 16, 2015 4:50 pm

Re: New and husband just diagnosed

Postby Joannerogers » Wed Sep 13, 2017 4:16 pm

2 1\2 years ago the doc told me I had 3 to 4 months to live, surgery was not an option. I'm still here today in remission from stage 4! It's early in the game for you so take it a day at a time!
53yo married 27 years, 2 children, 24 and 25
Diagnosed april 23,2015 rectosigmoid
Starting CEA 1845
Port placement and liver bx April 27
Folfox started april 29
Avastin added on May 6
Stage IV crc with mets to 50% of liver

10/13/15 dc'd transfusion #12...toxic
Pet/ct scan on 11/3/15
20% liver resected all margins clear 11/30/15
8/18/15 cea 21.
9/15/15 cea 13.9
10/13/15 cea 14.4
1/22/2016 cea 2.5
LAR 02/15/16 all clear

prayingof3
Posts: 10
Joined: Sun Sep 10, 2017 12:22 pm

Re: New and husband just diagnosed

Postby prayingof3 » Wed Sep 13, 2017 9:33 pm

I have another question. My husband and I were talking tonight about his first appointment tomorrow and what to expect. And he seems to think no matter what they tell us as far as staging, treatment, surgery, etc. that he will just be able to keep on going to work every day like normal. I just don't see how this is possible. I told him we would have to discuss that with the doctors. What has been everyone's experience? My husband is the type that never ever misses work for anything, that's just him. He has short and long term disability at work also, so I don't know why he's worried about this.
Caregiver to husband age 49
09/08/17: Colonoscopy and mass found at rectal sigmoid junction partial obstruction
10/10/17: Laparoscopic LAR surgery
10/19/17: Pathologic staging from surgery pT4a N1c with 4 tumor deposits, perineural invasion present,14/14 lymph nodes negative, clear margins, moderately-differentiated

weisssoccermom
Posts: 5749
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: New and husband just diagnosed

Postby weisssoccermom » Thu Sep 14, 2017 1:44 am

FIrst of all....BREATHE. I know that is easier said than done but you have to remember that this is all going to take some time. Some patients have doctors that move a little faster than others but be prepared for whatever comes your way....with respect to the timing. A day or so here or there, while being nerve wracking, is NOT going to change anything.

Obviously, with the tumor that close to the anus, your husband does not have colon cancer. Now, that being said, your husband COULD have anal cancer OR rectal cancer that is NOT the same as the rectal cancers that almost exclusively you will find on this board. You really have no way of knowing until you see the surgeon and get the results of the pathology report. IF you have rectal adenocarcinoma (what most of us on the board have) then your husband will likely have an appointment to have the CT or MRI, and EUS (Endorectal ultrasound....sometimes referred to as a transrectal ultrasound), blood work and then likely an appointment set up with the radiation oncologist. Obviously, as you can tell, all of this takes some time. Now, IF (notice I said IF) your husband's pathology shows squamous cell cancer, that is most likely classified as anal cancer (and sometimes rectal cancer that is treated entirely differently than rectal adenocarcinoma). Wait until you have the pathology report to know exactly what you are dealing with.

Make sure that your surgeon is board certified in colorectal surgery. You'll find that most general surgeons will tell you that they can perform the necessary surgery and technically they can. When dealing with rectal cancer, the surgery is more difficult than colon cancer surgery due to the tight proximity of the pelvis. Here is the link that you can verify the surgeon at: http://www.abcrs.org/verify-a-physician-2/

Don't let anyone pressure you into thinking that you shouldn't have a second opinion if that's what you want. Taking that extra few days, while personally stressful, isn't going to hurt anything. Take your time to choose the doctors that YOU BOTH feel comfortable with and trust.
As far as staging goes that can't happen until all the tests are done. I know it's difficult to be in limbo but in this case, it's just what has to be.
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness

JJH
Posts: 164
Joined: Mon Apr 24, 2017 7:26 am
Location: Europe

Re: New and husband just diagnosed

Postby JJH » Thu Sep 14, 2017 2:24 am

prayingof3 wrote:... What has been everyone's experience? ...

My experience was that my rectal tumor was causing a blockage, so there was no time to consider 5 weeks of pre-surgery chemo/radiation. I had emergency surgery the same week, performed by a Board Certified colorectal surgeon.

In.your meeting today, be sure to take good notes and write down any technical terms that you don't understand so that you can look them up later
DX 2012: Stage IIc
Locations: upper-rectum T4b + mid-sigmoid T4b
Surgery: Open LAR + temp ileo
TX: chemo/rad (28 days) + Xelox (3 cycles)
Ileo reversal
5 years surveillance
7/3/2017: Final 5-year report -
"complete remission ... cured'

Aqx99
Posts: 169
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

Re: New and husband just diagnosed

Postby Aqx99 » Thu Sep 14, 2017 7:20 am

Every person is going to be different, but I will share my experience. I worked all through chemoradiation. I had to take a few hours off each week to go to the treatments every day, of course, but then I came in to work and finished off my shift. My surgeon wrote me out of work for a month when I had my LAR. I probably could have come back sooner, but I appreciated the recovery time. I am currently working as I go through my adjuvant chemotherapy. Again, I do take some time off here and there as needed, but for the most part I am keeping up my normal schedule. When it comes to my next surgery, I'm guessing he will write me out of work for a week or two, since the reconnection should not be as bad as the LAR.

The key is to not let him push himself too much. Rest is very important right now, and throughout the treatment process. I ended up taking a week off work during my second chemo cycle because I was so run down I could barely function. Having that time to rest helped bring my numbers back up and gave me back a little bit of my missing energy.
Anne, 39
Stage IIIB Rectal Cancer
T3N1bM0
Diagnosed at age 39
2/21/17 Diagnosis
2/21/17 CEA 0.9 ng/mL
3/23/17 - 5/2/17 Chemoradiation, 28 treatments
6/14/17 Robotic LAR with temp loop ileostomy, ovaries and fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 Started CapeOx
7/24/17 Diagnosed with precursor ovarian cancer
9/6/17 CA 125 11.1 U/mL
1/18ish Reversal

prayingof3
Posts: 10
Joined: Sun Sep 10, 2017 12:22 pm

Re: New and husband just diagnosed

Postby prayingof3 » Sat Sep 16, 2017 12:42 pm

Ok, so we met with the colorectal surgeon. He did an exam on my husband, a proctoscope? During the scope, we heard him say something about T4? Anyways, he said that the tumor wasn't as low down as thought so if he was to have surgery then there would be a high chance of no colostomy bag. His tumor apparently is in a "grey" area of rectum and the sigmoid colon. And he said my husband would be set up for CT scans of chest, abdomen, and pelvis before any surgery would be scheduled. He told us that if the cancer showed spread he would not schedule surgery and if there was not spread then he would schedule surgery and would then give us staging after surgery. Does all of this sound about right? It's only been a week and a day, but I feel like everything is moving in slow motion. We don't even have a date for the scans yet and they didn't even take blood work, which he said he will have blood work done.

Any thoughts?
Caregiver to husband age 49
09/08/17: Colonoscopy and mass found at rectal sigmoid junction partial obstruction
10/10/17: Laparoscopic LAR surgery
10/19/17: Pathologic staging from surgery pT4a N1c with 4 tumor deposits, perineural invasion present,14/14 lymph nodes negative, clear margins, moderately-differentiated

weisssoccermom
Posts: 5749
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: New and husband just diagnosed

Postby weisssoccermom » Sat Sep 16, 2017 2:16 pm

As I said in an earlier post, rectal cancer staging and the whole process can take TIME. Rectal cancer staging isn't usually done after surgery because most patients with rectal cancer have some form of neoadjuvant (before surgery) treatment such as chemoradiation or chemo.
IF, however, the scan shows spread, then that IS a stage IV, regardless of the tumor depth. I'm wondering if the doctor actually did an EUS during the exam (it can easily....although not painfree) because you heard T4. A simple scope wouldn't be able to ascertain the "T" staging so if you heard correctly, then at least one of the tests (EUS) seems to have already been done.
The reason that rectal cancer is clinically staged prior to surgery is due to the likelihood of having some form of neoadjuvant treatment. The idea behind having chemo and/or chemoradiation prior to surgery is to SHRINK the tumor and/or the lymph nodes....to kill off the cancer in that area so that if staging was done solely after surgery, the results wouldn't be accurate. Take my scenario. My tumor was labeled as a T3 prior to any treatment......after treatment (chemoradiation and chemo) there was absolutely no tumor left....only a scar. IF the doctor had staged me solely on the surgical pathology report, it would have indicated that I didn't have cancer.

Now, if the scans show that there is distant spread (say to the liver, lungs or a distant node(s), then the patient is automatically a stage IV....regardless of the tumor depth. However, the 'T" staging will still be ascertained to identify which stage IV the patient is....stage IVa, b, etc. Hope that all makes sense. The same also applies if the CT scan picked up suspicious LOCAL nodes....then the patient would be staged as a stage III but again, the depth of the tumor would need to be ascertained to determine Stage IIIa, b, or c.

I understand the idea that you guys just WANT IT OUT but....tests must be performed to determine the best route possible in every case. If the tumor has spread, yes, it is common for no surgery to be performed first the oncologist may want to address the distant spread with chemo. You haven't said but have you had an appointment with an oncologist? If not, then find one and get into see him/her and talk with them ASAP. Although you may not feel the need to see the oncologist right now, it is important to know what you are dealing with and to have everyone 'on board' that your husband will be seeing in the future. IF indeed the tumor is a T4 regardless of spread, your husband is almost certainly looking at more chemo...definitely after surgery and possibly (based on the location of the tumor) chemoradiation before surgery. While the radiation oncologist is in charge of the actual radiation treatments, the medical oncologist is the one who Rx's the chemo. You don't have to wait for the surgeon to recommend an oncologist.....get a referral from friends or even your GP. See what oncs are in network with your particular insurance plan. That is one thing that YOU can do right now to get the process moving. From my experience, it is the oncologist, not the surgeon who orders the tests, etc. so start looking into an appointment with one of them.

Hope this helps.
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness

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PGLGreg
Posts: 1417
Joined: Sat Nov 04, 2006 12:38 am
Location: Waimanalo, HI

Re: New and husband just diagnosed

Postby PGLGreg » Sun Sep 17, 2017 12:18 pm

prayingof3 wrote:Of course I asked all kinds of questions and we are being referred to a colorectal surgeon next week to see if it is even operable. The doctor that did the scope didn't seem too hopeful at all and I am just devastated. He said there may not be a cure but there would be treatment. I feel like this is really bad. I know nothing about cancer and everything we were told sounds like my husband may not make it.

I suspect that you're not going to know too much about how it will turn out until after the surgery. My surgeon told me that the estimates of just where a cancer is, after a colonoscopy, can be wildly off. (After my colonoscopy, the cancer was estimated to be 17 cm above the anus, but after surgery, that figure turned out to be only 5 cm above the anus.)
I hope you'll bear in mind that your doctors are experts and we patients here are not. I hope you give their opinions much more weight than ours. My gastroenterologist recommended a surgeon who, as it happens, is not a board certified colorectal specialist, and the surgeon did a fine job, for me. However, I don't think it would hurt to press your doctor about just why he recommended this particular surgeon, or whether a second opinion is a good idea. (I didn't get one.)
Greg
stage 2a rectal cancer 11/05 at age 63
LAR 12/05 with adjuvant radiation+5FU,leucovorin 1-2/06
NED for 11 years, cured

larway
Posts: 58
Joined: Tue Dec 29, 2015 4:40 pm

Re: New and husband just diagnosed

Postby larway » Tue Sep 19, 2017 1:53 pm

prayingof3 wrote:Ok, so we met with the colorectal surgeon. He did an exam on my husband, a proctoscope? During the scope, we heard him say something about T4? Anyways, he said that the tumor wasn't as low down as thought so if he was to have surgery then there would be a high chance of no colostomy bag. His tumor apparently is in a "grey" area of rectum and the sigmoid colon. And he said my husband would be set up for CT scans of chest, abdomen, and pelvis before any surgery would be scheduled. He told us that if the cancer showed spread he would not schedule surgery and if there was not spread then he would schedule surgery and would then give us staging after surgery. Does all of this sound about right? It's only been a week and a day, but I feel like everything is moving in slow motion. We don't even have a date for the scans yet and they didn't even take blood work, which he said he will have blood work done.

Any thoughts?


Sorry that y'all are having to go through this, it sucks. I had rectal cancer did chemo/radiation, surgery with temporary ileostomy, more chemo and then reversal. Other than a few weeks after surgery, I continued to work and drive myself the 2 hour round trip to radiation. Even continued to play golf (though not very well), pester my wife about sex and mow the grass (had more energy for the other two and not so much for the mowing). Good luck to you both and continue to use this forum as your outlet to vent.
Dx 12-18-15 rectal cancer @ 45 yo.
30 sessions of rad/ 3300 mg Xeloda
LAR and temp ileostomy 5/2016
6 rounds of xelox
Ileostomy reversal 11/2016

michelle c
Posts: 1844
Joined: Wed Dec 02, 2009 3:58 am

Re: New and husband just diagnosed

Postby michelle c » Wed Sep 20, 2017 5:04 am

Hello,
Sorry to hear about your husband but you have found a good support place here!
I know only too well how scary a cancer diagnoses can be. I know it's hard but try not to google too much. I researched and googled a lot initially, but it only heightened my anxiety.

I feel that the doctor had no right saying what he did, especially as it is not necessarily correct. Not right of him at all.

I had my colonoscopy and was told that I had cancer. A colorectal surgeon saw me within 1-2 hours. I had a CT the next day and saw the colorectal surgeon two days later. He booked me in for surgery the next week. Mine was colon cancer so treatment can be different to rectal surgery.

Not knowing and not having a plan in place can be agonising. But you will soon. Write down all your questions so you don't forget to ask them at his appointment. Best wishes and we will be here for you xx
25 May 09 Dx with CC (sigmoid colon) 2 days after my 44th b'day
CEA prior to surgery 4.7
3 Jun 09 LAR - Stage III 3/10 lymph nodes
6 Jul - 10 Dec 09 12 cycles FOLFIRI
Genetic testing - inconclusive for Lynch
Jul 12 port removed & hernia repair

JJH
Posts: 164
Joined: Mon Apr 24, 2017 7:26 am
Location: Europe

Re: New and husband just diagnosed

Postby JJH » Wed Sep 20, 2017 9:04 am

prayingof3 wrote:...Please help with any advice that you have, I would so much appreciate it! Thanks!

From reading your posts, it looks like you are in the classic situation described in Chapter 2 of the book entitled AfterShock:
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=53373&p=422408#p422408

Basically, the dilemma you are facing is this: You have a flood of emotions and other personal issues to resolve after the initial shock of a cancer diagnosis, but at the same time there are some critical technical issues in the areas of (1) diagnosis/staging, and (2) treatment regimen selection, that you really need to come to grips with and be involved with in the first few weeks. You need to be on top of things and be able to follow what the doctors are doing while they are trying to specify the initial diagnosis and staging as accurately as they can, and during this time you need to learn enough about staging and about treatment regimen selection so that you can follow and check up on the doctors so as to make sure that they are following all of the required steps and not forgetting to do some essential or important thing.

In the first couple of weeks there is a rather steep learning curve where you need to learn a lot of new vocabulary and new technical terms just to keep up with what the doctors are doing

In my opinion, you really need to be involved at this stage, otherwise you run the risk of being set up for some kind of 'one-size-fits-all ' 'standard of care' treatment regimen when what you really want is a regimen that is more customized to your specific risk factor profile and one that will be more suitable for your purposes.

To do this takes a bit of work on your part, but this extra work in the first few weeks will be well worth the effort if it results in a more personalized treatment plan for you.

Here is some information on staging:
http://www.cancer.net/cancer-types/colorectal-cancer/stages

Here is some information on the types of surgery commonly use to remove rectal cancers:
https://www.oncolink.org/cancers/gastrointestinal/rectal-cancer/surgery-for-rectal-cancer

Here is some information on Rectal Cancer treatment options:
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=53147&p=419990#p419990

Here is some information on how to access the NCCN treatment protocols for rectal cancer
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=57826&p=455361#p455361
https://www.nccn.org/patients/guidelines/rectal/index.html

You can also check on the qualifications of your surgeon or medical oncologist by using the CertificationMatters website:
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=52349&p=410280#p410280

So, in summary, my advice is to master as much of this information on Staging and on Rectal Cancer treatment protocols as possible in the next few weeks, as this knowledge will pay big dividends over the long term.
DX 2012: Stage IIc
Locations: upper-rectum T4b + mid-sigmoid T4b
Surgery: Open LAR + temp ileo
TX: chemo/rad (28 days) + Xelox (3 cycles)
Ileo reversal
5 years surveillance
7/3/2017: Final 5-year report -
"complete remission ... cured'

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ocstacy
Posts: 153
Joined: Mon Jun 19, 2017 11:29 pm
Facebook Username: stacy

Re: New and husband just diagnosed

Postby ocstacy » Thu Sep 21, 2017 3:20 am

The doctor that did the scope didn't seem too hopeful at all and I am just devastated. He said there may not be a cure but there would be treatment. I feel like this is really bad. I know nothing about cancer and everything we were told sounds like my husband may not make it.


I was there just like you about almost 5 months ago. I forced my mom to get a colonoscopy due to all of the signs and symptoms she was telling me. Her Gen. Dr. suggested for her to get a colonoscopy 3-4 years ago but my mom declined and I didn't know that. Her last one was about 9 years prior to her last one in May. Anyhow fast forward to, I left the office the same way you did. I received horrible news too about my mom. I received a call from the nurse after my mom's colonoscopy last May stating that the Dr. wanted to talk to me. ( I did not thing anything of it) The nurse kept asking me "How old is your mom?" "When was her last scope?" As my mom was still in conscious sedation, I didn't think anything of it.The Dr. came in and closed the curtains. 1st photo, showed a mass, 6 cm in her rectum. When the Dr. told me the results, it was like a movie, echoing, like a haze.. "Excuse me, are you trying to tell me that my mom has cancer?" He says "Yes, and it doesn't look good, she will most likely have a B*G for the rest of her life" "I am so sorry " I immediately started to cry, then phoned my bestie, hubby, and father. I was hysterical. I didn't tell my mom of course. I wanted the dr. to tell her three days later at the actual appt.

Anyhow, I wouldn't stress about anything yet. There are so many options and colon cancer is curable. My mom had Neoadjuvant therapy done and next Monday we will find out if the tumor has shrunk, etc.. we will find out the final stage. I am nervous as heck. My mom will have the colorectal surgery laparoscopic 3D done sometime this year. She is very nervous. If she has to have a Colostomy for the rest of her life, I am okay with that. Her quality of life will be so much better. We won't know until next week like I said. I hope that your husband will have a positive experience. This club is great.. I learned so much from recipes, meds, vitamins, toiletries, advice, what not to say, what to expect from my first colonoscopy. So much support and experiences. This club is my only support from my mom's side of family. Best of luck to you and your family. KIT
Caregiver/daughter to dear mother age 77, dx 5/09/17
Caregiver/niece to uncle, age 89, CHF Diab2
Rectal CA Stage 3A Low grade adenocarcinoma- 6 cm
Neoadjuv. Chemo/Rad. start 7/10/17 ended 08/16/17
3D Lap. surgery @ Keck USC, Dr. Sang Lee 10/17/17 temp ileostomy
Chemo Xeloda post surgery following reversal April 2018
Praying 4 "Complete Response" or "NED"
Love my mom, BUTT she is a horrible patient! :roll:
Any Stage 3A survivors out there? Please share your journey!

prayingof3
Posts: 10
Joined: Sun Sep 10, 2017 12:22 pm

Re: New and husband just diagnosed

Postby prayingof3 » Sat Sep 23, 2017 7:54 am

Wow! Thanks to all of you for so much information! I have been taking time to really educate myself on as much as I can and look at all the links that some of you provided. So helpful! Thanks!

Update:

He had his CT scans done this week and several things showed up that may or may not be anything.

1. 2 lesions found on his liver and he is being sent for MRI with contrast to get a better look. We are hoping they are cyst.
2. 3 nodules found on his lungs and they are taking a watch and see approach to these but report states can't rule out metastatic disease. This scares me!
3. Unusual number of shotty lymph nodes in adjacent sigmoid mesentery
4. Also a soft tissue growth extending into adjacent sigmoid mesentery.

Some of this I understand and some I don't. We haven't met back with the surgeon yet so the only thing that was discussed with us by phone was about the lungs and the liver. None of this sounds good to me though! I'm trying to stay positive though! If anyone could shed anymore light on these results, please do! Thanks again!
Caregiver to husband age 49
09/08/17: Colonoscopy and mass found at rectal sigmoid junction partial obstruction
10/10/17: Laparoscopic LAR surgery
10/19/17: Pathologic staging from surgery pT4a N1c with 4 tumor deposits, perineural invasion present,14/14 lymph nodes negative, clear margins, moderately-differentiated

prayingof3
Posts: 10
Joined: Sun Sep 10, 2017 12:22 pm

Re: New and husband just diagnosed

Postby prayingof3 » Tue Sep 26, 2017 11:19 am

Anyone have any opinions or knowledge on these results I posted? Thanks! And also he hasn't even started any treatment yet and just in the last week I've noticed his energy levels going way down. It worries me!
Caregiver to husband age 49
09/08/17: Colonoscopy and mass found at rectal sigmoid junction partial obstruction
10/10/17: Laparoscopic LAR surgery
10/19/17: Pathologic staging from surgery pT4a N1c with 4 tumor deposits, perineural invasion present,14/14 lymph nodes negative, clear margins, moderately-differentiated


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