I am so worried.

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Punky44
Posts: 121
Joined: Mon Oct 01, 2018 4:29 pm

I am so worried.

Postby Punky44 » Mon Oct 01, 2018 4:38 pm

Hello,

I found this forum when doing obsessive Google searches. My mom had a colonoscopy this morning and they found “a large mass” in her rectum that is “likely cancer” and it is so large that they apparently couldn’t even perform the colonoscopy.

She’s 68 and this is her first colonoscopy (I forced her to go after a positive FIT.)

She’s going to get biopsy results back in a couple days and is scheduled for a scan where she has to drink barium. They mentioned surgery but did not schedule it.

She claims she has no symptoms.

I am beyond worried/devastated/angry—I feel like I am dying or wish I could take her place.

I am preparing myself for the worst due to her age, it’s size and her lack of preventative screenings until now (18 years too late.) I am even worried I could have it too since I read this runs in families (I’m 34.)

Is there any hope at all? I feel like my world ended today.
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17
MRI/CT/PET puts staging at T3N2M0
Trying total neoadjuvant therapy—chemo first, then short course radiation, then surgery
11/5/18 started Folfox—3 down, 5 to go!

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

weisssoccermom
Posts: 5883
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: I am so worried.

Postby weisssoccermom » Mon Oct 01, 2018 5:32 pm

First of all, take a DEEP DEEP breathe! There's nothing that you can do to change things.....right now the best advice I can give you is to try and put the 'what ifs' behind you and look to the future.

Ok, your mom has a mass in her rectum which is, based on the doctor's best guess....likely cancer. While the biopsy is the definitive answer, doctors can usually tell whether or not a mass looks cancerous.
Let's assume that the mass is cancerous......that will mean that your mom will be undergoing a bunch of tests initially before any treatment begins. USUALLY with rectal cancer, neoadjuvant (before surgery) treatments are undertaken to attempt to shrink the mass and to 'sterilize' the local nodal field. Your mom will likely be given a referral to an oncologist and he/she should order not only a CR scan but also some blood work. The doctor will want to check her CBC and do a CHEM panel on her to make sure that nothing else is amiss. He/she should also order a CEA (blood test) at the same time. Make sure that this test is done BEFORE any treatments begin. Many tumors (not all though) give off a particular protein which the CEA test is testing for. Many people, like me, have had big tumors and/or multiple tumors and still have a perfectly normal CEA level. Just know that if the test is normal, it does NOT indicate anything except that the tumor doesn't express that particular protein.

The 'normal' protocol for stage II and above rectal cancer is to have either chemo first, then radiation, followed by a rest period then surgery, followed by more chemo OR chemoradiation, followed by a rest period, then surgery and followed by more chemo. GENERALLY, surgery is not the first step UNLESS there are some mitigating factors...such as an almost complete blockage. Also, stage I patients usually go straight to surgery...but not always. My point is....its not uncommon for surgery NOT to be scheduled right now. Don't freak out about that!

I might also suggest that you get a referral to a BOARD CERTIFIED colon and rectal surgeon and not a general surgeon who can do the surgery. Too often, patients are referred to a general surgeon and while there is nothing wrong with that, many of us on this board firmly believe that a rectal cancer patient should be seen by a board certified colorectal surgeon. I will put the link to their site later on in this post. At the very least, get a second opinion...especially if your mother's tumor is sitting low in her rectum/anal area.

Right now, your mom will need to get the bloodwork, her biopsy results, a CT, MRI or PET scan and get an appointment with an oncologist. Start looking in your area for a surgeon and be prepared to get a 2nd opinion if that's what she wants to do. I would also suggest that your mother get a 3 ring binder, complete with dividers and start getting copies of EACH and EVERY report that is generated for her. For example, get a copy of the colonoscopy report, the biopsy report, blood work and the CT report. Sometimes, the doctors are hesitant to give them to the patient BUT...it is your right to have a copy. I have always had every place that I go copy my family doctor. That way, I can go to her (GP) and get a copy of anything.

Assuming this is cancer, you and your mom are in for the long haul. This process takes time. The tests will be have to be ordered, appointments made with the oncologist and potentially a surgeon right now (although if surgery is postponed for radiation....you can wait on finding a surgeon) and then the radiation oncologist (the one who delivers the radiation) will need to take place. All of this can and does take time. It may be a month or even 6 weeks before all of this is accomplished. Don't worry...you'd rather have all of the tests done and done correctly instead of rushing into a surgery that might be better if it waits for other treatments to first work.

Here is the link from the site that accredits these surgeons.

http://www.abcrs.org/verify-a-physician-2/

Good luck. Come back and let us know what the biopsy results show.

BTW, your mom won't get a staging until all of the tests are done. Oh, I forgot....usually there is also an endorectal ultrasound that helps to determine how deeply the tumor invades the wall of the rectum and shows local nodes more clearly than a CT scan. A CLINICAL staging is done after all the tests are back. The doctors have to do a clinical staging because once the patient starts any kind of neoadjuvant treatment, pathology results would likely be different. For example, radiation should hopefully shrink or even eliminate the tumor but that doesn't mean that the patient never had cancer. Clinical staging is based on THREE components:

T - tumor depth into the rectal wall (usually ascertained by rectal ultrasound....sometimes by rectal MRI). This will be given a depth of T1, T2, T3, or T4..do NOT confuse this with the overall stage...totally different.

N - number of LOCAL nodes that appear suspicious .....likely to be affected by cancer cells.

M - number, if any, of distant metasteses...a solid tumor in another organ such as the liver or lungs OR distant lymph nodes.

Hope this all helps a little.
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

Dionca
Posts: 19
Joined: Sat Dec 02, 2017 2:04 am

Re: I am so worried.

Postby Dionca » Mon Oct 01, 2018 6:57 pm

I don't have much to add to Weisssoccermom's excellent and thorough information and advice, other than to point out that you shouldn't be "preparing for the worst due to her age". She is about the average age for colon cancer and it can be curable. I know you are in shock right now, but hopefully you will feel a bit better about things once your mother has a diagnosis and a plan in place.

Best wishes
May 2015 right hemi CC cecum
removed terminal ileum, illeocecal valve, appendix, cecum, ascending colon, omentum
stage 3b T3 N1b MX 2/27 nodes (isolated tumour cells in 1 add'l node)
moderately differentiated
PNI - positive
LVI - positive
Folfox 12 sessions (oxi discontinued for 11 & 12)
Neulasta with 3-12 due to low WBC count
CEA at diagnosis 8.6
CEA after surgery 1.2
CEA during chemo 4.6 / 3.3 / 2.3
CEA after chemo 1.5 / 1.2 / 1.2 /1.2 /1.2 / 1.4 / 1.1 / 1.2 / 1.9 / 1.3 / 1.6 /1.4
neuropathy

User avatar
ANDRETEXAS
Posts: 601
Joined: Fri Feb 14, 2014 11:01 am
Location: Austin, Texas (University of Tennessee alumnus)

Re: I am so worried.

Postby ANDRETEXAS » Mon Oct 01, 2018 7:58 pm

Agree. Spend your time and energy far away from google, but glad you found this forum You will find nothing there that will be equivalent to your Mother's individual experience and diagnosis. Wait until you have listened to the doctors, before you decide what's going on. This initial time is the worst because you know so little. Once you do know facts, your Mother (and you) and her doctors can formulate a plan for her. Having a plan will be half the battle, and things will become clearer. Once that is established, there are many informative and caring people here that can you help with the journey. Andre
2014
2/10 - Colon resect
2/13 - DX- Stg IIIb
3/7 - Port placed
3/11 - FOLFOX (12 rds w/full oxi)
8/14 - Chemo finish
8/25 - CT- Inc
9/5 - clean PET
12/10- clean CT
2015
3/2 - Clean colonoscopy & port removed
3/4- clean CT
9/21- clean CT
2016
3/23- clean CT
2017
2/22- clean CT
2018
3/21 - clean CT
4/11 - clean colonoscopy

ONE DAY AT A TIME !

Punky44
Posts: 121
Joined: Mon Oct 01, 2018 4:29 pm

Re: I am so worried.

Postby Punky44 » Tue Oct 02, 2018 1:58 am

Thank you so much for the replies. I am trying so hard to stay positive but I myself suffer from generalized anxiety disorder, often related to health issues, so needless to say I am a total mess.

Does big size of a polyp likely to mean a higher stage? I just keep thinking it has to be horrible and stage IV for sure if it was allowed to get that big over the years.
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17
MRI/CT/PET puts staging at T3N2M0
Trying total neoadjuvant therapy—chemo first, then short course radiation, then surgery
11/5/18 started Folfox—3 down, 5 to go!

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

Dionca
Posts: 19
Joined: Sat Dec 02, 2017 2:04 am

Re: I am so worried.

Postby Dionca » Tue Oct 02, 2018 10:37 am

It's not so much the size, but how far it has spread through the rectal/colon wall. See Weisssoccermom's explanation for the T/N/M (tumour/nodes/metastasis). The size of the mass does not determine the stage - it's based on the TNM.
May 2015 right hemi CC cecum
removed terminal ileum, illeocecal valve, appendix, cecum, ascending colon, omentum
stage 3b T3 N1b MX 2/27 nodes (isolated tumour cells in 1 add'l node)
moderately differentiated
PNI - positive
LVI - positive
Folfox 12 sessions (oxi discontinued for 11 & 12)
Neulasta with 3-12 due to low WBC count
CEA at diagnosis 8.6
CEA after surgery 1.2
CEA during chemo 4.6 / 3.3 / 2.3
CEA after chemo 1.5 / 1.2 / 1.2 /1.2 /1.2 / 1.4 / 1.1 / 1.2 / 1.9 / 1.3 / 1.6 /1.4
neuropathy

Punky44
Posts: 121
Joined: Mon Oct 01, 2018 4:29 pm

Re: I am so worried.

Postby Punky44 » Tue Oct 02, 2018 3:28 pm

Thank you. I am holding out hope it is maybe by some miracle not spread yet or by some even greater miracle it wouldn’t be cancer at all, despite the doctor saying it likely was. Wishful thinking right?

I also called my doctor to ask if I need a colonoscopy and they said they needed more information on my mom’s first and they also said because she is 68 I likely wouldn’t need one until 50 but I see so many stories on here of people in their 30s that I don’t know if I should advocate more or be satisfied with that. I have had on/off small episodes of bright red blood that usually happen with a difficult bowel movement probably over the last decade so I’ve always assumed that was hemmroids but now I’m freaking out that both of us could have this :(

I am happy to have found you all and I feel like a broken record and I know I am nothing special but I just cannot believe this is happening to my mom and my family. She currently watches my daughters all day M-F because I work full time and the bond they have is basically equal to mine. I also have no FMLA benefits because I just started this job two months ago so I’m thinking I will likely have to quit to be there for my mom and to watch my daughters. This is financially awful for my family as it cuts our household income in half and puts us on my husband’s crappy insurance. So the last 24 hours I have been going back and forth between reading everything I can about colon cancer and trying to crash budget and see how we can make ends meet for a year or two. How is this real life. I have barely slept or ate.
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17
MRI/CT/PET puts staging at T3N2M0
Trying total neoadjuvant therapy—chemo first, then short course radiation, then surgery
11/5/18 started Folfox—3 down, 5 to go!

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

rtcasper
Posts: 43
Joined: Sat Aug 04, 2018 12:12 pm
Location: Ohio

Re: I am so worried.

Postby rtcasper » Tue Oct 02, 2018 6:36 pm

Hi, I'm sorry about your news about your mom and believe me, this group is the right place to be. You guys are now officially in my prayers. Yes, financially speaking, it's going to be a bear, but you'll get through it. Also, my tumor size was approx 5cm and I just received the phone call that it has been staged as stage 1. So, the initial size really doesn't determine the staging, it's how far it has progressed, so keep your head up, and stay as positive as possible. Also, I know it's been said, but get a board certified Colo-rectal surgeon. Ask any questions u have here and you'll get plenty of information. Please keep us informed. Ryan
By the glory, by the grace, by the strength of God, I will be made whole.

43-M
Aug 3, 18-colonoscopy, 5cm mass 12cm from AV rectal cancer
Aug 16-MRI
Aug 17-CT,chest and pelvis
CEA-.99-likely not a good marker
Clinical DX-T2/T3n1 -3cm mass, 13.5 from AV-might be colon? - let surgeon make determination
Sept 10-14 radiation
Sept 25-CR lap surgery, temp loop ileostomy
Oct 2-path stage pT1N0M0

weisssoccermom
Posts: 5883
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: I am so worried.

Postby weisssoccermom » Tue Oct 02, 2018 9:35 pm

rtcaspar.....I would like to ask you a question about your staging. Who told you that you are a stage I? You are given a clinical stage upon diagnoses with rectal cancer and even with just 5 days of radiation (presumably a stronger dose), your pathology report is NOT indicative of your actual stage. The reasoning is simple. Any neoadjuvant treatment you have (in this case radiation) has been presumed to have had some effect on the tumor. It may not have shrunk the tumor down to nothing, but, based solely on your signature, the radiation DID do its job in shrinking your tumor from a T2/T3 down to a T1. Just because your pathology report shows a T1 (and likely, that report say
ypT1....which simply means a pathological determination AFTER some neoadjuvant treatment....your inital T2/T3 designation is what your clinical staging is.
The "M" designation didn't change based on the radiation and it's likely that the N didn't either. However, you stated that you were clinically a T3/T2 and that designation DID change....so the radiation did have an effect on your tumor.

Too often, patients think that because their tumor has shrunk significantly and/or the suspicious nodes that showed up on the presurgery ultrasound/MRI/CT went away that their staging changes....IT DOES NOT! For example, I was staged initially as a stage IIA (the T3 was dubious on the initial ultrasound)...after neoadjuvant treatments...there was absolutely NO sign of anything cancerous when I had my surgery. All my followups for years showed me to be clean. That doesn't mean, based on the surgical specimen that I was a stage 0 or didn't have cancer. I will ALWAYS be staged as a stage II and no matter how well I responded to treatment, my record will still indicate a stage IIA diagnosis.
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

Punky44
Posts: 121
Joined: Mon Oct 01, 2018 4:29 pm

Re: I am so worried.

Postby Punky44 » Tue Oct 02, 2018 11:21 pm

Sorry, more questions as I research:

Since they said that they could barely get the scope in during the colonoscopy before hitting the “large mass,” can I assume this is a “left sided” mass? Either in the rectum or sigmoid colon?

The T numbers...this is the depth in the wall vs the size right? So someone could have a large mass but a low T number?
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17
MRI/CT/PET puts staging at T3N2M0
Trying total neoadjuvant therapy—chemo first, then short course radiation, then surgery
11/5/18 started Folfox—3 down, 5 to go!

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

weisssoccermom
Posts: 5883
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: I am so worried.

Postby weisssoccermom » Wed Oct 03, 2018 12:15 am

The "T" stage is the depth that the tumor invades the colon/rectal wall. It has absolutely NOTHING to do with the actual size of the mass. One could have what appears to be a large mass (based on colonoscopy which, remember, can only see what is in the colon or rectum itself) but it is growing outwards ....INTO the colon/rectum and not into the walls of the colon or rectum. Conversely, a small tumor could have grown into the wall of the colon or rectum.

As for a 'left sided' mass....if I understand your question, then no. If the doctor could barely get the scope in before encountering the mass, it is almost certainly rectal cancer. The sigmoid is the section above the anal canal and the rectum and it turns to the patient's left.

I know that this is hard to do but please, stop googling. We all did it and we all understand BUT....you are going to eventually run across articles, comments, etc. that you won't want to read and frankly, with the little information you have right now....it's NOT a good idea. You have no idea what your mom is dealing with. The biopsy report will tell you what exactly she is dealing with. Most likely it is cancer....as I said earlier, the doctor can usually tell if it is a large mass....it will have certain characteristics. Most colorectal cancers are adenocarcinoma ....some are mucinous, some signet cell, etc. There are other types that really are fairly rare so I wouldn't even worry about them right now. The biopsy report will also give you insight into the grade of the cancer cells. Basically, the biopsy will show how close to 'normal' cells the tumor cells look.
There are so many unknowns with your mother's situation that it is honestly impossible for you to make any assumptions.
I know you want answers and you want them now but you really need to wait for the biopsy results, the results of her blood work and the results of other diagnostic tests such as the CT and likely a rectal ultrasound.
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

Punky44
Posts: 121
Joined: Mon Oct 01, 2018 4:29 pm

Re: I am so worried.

Postby Punky44 » Wed Oct 03, 2018 4:05 am

Thank you so much for the explanation.

Of course I am up in the middle of the night Googling before I came back here to check responses :(

I know you are right and I will try to take this advice. I am just so scared and I keep hoping I can find some “answer” by pouring through information. But like you said, most of what I am finding makes my heart sink.
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17
MRI/CT/PET puts staging at T3N2M0
Trying total neoadjuvant therapy—chemo first, then short course radiation, then surgery
11/5/18 started Folfox—3 down, 5 to go!

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

rtcasper
Posts: 43
Joined: Sat Aug 04, 2018 12:12 pm
Location: Ohio

Re: I am so worried.

Postby rtcasper » Wed Oct 03, 2018 7:39 am

Hi soccer mom,
You are of course, correct. My clinical staging was T2/T3 with possibly 1 node involved. The pathological came back as T1N0. So yes, you're right,the short course rad must've had some effect. I was just super happy to hear that from my surgeon. I'm actually seeking advice on my post for recommended follow up treatment options. Thanks
By the glory, by the grace, by the strength of God, I will be made whole.

43-M
Aug 3, 18-colonoscopy, 5cm mass 12cm from AV rectal cancer
Aug 16-MRI
Aug 17-CT,chest and pelvis
CEA-.99-likely not a good marker
Clinical DX-T2/T3n1 -3cm mass, 13.5 from AV-might be colon? - let surgeon make determination
Sept 10-14 radiation
Sept 25-CR lap surgery, temp loop ileostomy
Oct 2-path stage pT1N0M0

Punky44
Posts: 121
Joined: Mon Oct 01, 2018 4:29 pm

Re: I am so worried.

Postby Punky44 » Wed Oct 03, 2018 10:21 am

We are still awaiting the biopsy results but her bloodwork came back and her CEA is a 17. I realize this means likely cancer but is the high number indicative of the stage????
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17
MRI/CT/PET puts staging at T3N2M0
Trying total neoadjuvant therapy—chemo first, then short course radiation, then surgery
11/5/18 started Folfox—3 down, 5 to go!

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

rtcasper
Posts: 43
Joined: Sat Aug 04, 2018 12:12 pm
Location: Ohio

Re: I am so worried.

Postby rtcasper » Wed Oct 03, 2018 10:37 am

No, the number has nothing to do with stage. But it is likely a good marker for treatment, meaning that they will want to see that number decrease as she begins different treatments. As u can see by my signature, my CEA was .9,which was well within a "good" range, basically meaning that they couldn't use it as a factor for determining effectiveness of treatments. This does appear to be the case with your mom. No staging will be determined until after a CT scan or PET scan and/or MRI.
By the glory, by the grace, by the strength of God, I will be made whole.

43-M
Aug 3, 18-colonoscopy, 5cm mass 12cm from AV rectal cancer
Aug 16-MRI
Aug 17-CT,chest and pelvis
CEA-.99-likely not a good marker
Clinical DX-T2/T3n1 -3cm mass, 13.5 from AV-might be colon? - let surgeon make determination
Sept 10-14 radiation
Sept 25-CR lap surgery, temp loop ileostomy
Oct 2-path stage pT1N0M0


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