New member - scared & looking for tips

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Malidosa
Posts: 35
Joined: Sun Dec 29, 2019 11:15 pm

New member - scared & looking for tips

Postby Malidosa » Mon Dec 30, 2019 5:20 am

Hi.

I’ve been reading posts on here for about a week and I am so moved at how supportive this community is. I’m in desperate need of anyone’s experience if they have anything that sounds similar to mine.

My story - for years I’ve battled hemorrhoids always they have gone away with over the counter meds. This past July, I started to get what I thought was another round of hemorrhoids but they never seemed to go away. I went to the doctor, was told it was hemorrhoids. Got really bad went to er, was told it was hemorrhoids. Finally out of desperation and pushing I got a GI appt. GI said sounds like hems but will do a colonoscopy to make sure.

Xmas eve of this year I was wheeled into a colonoscopy room excited to find out what’s been causing pains since July. Only to be woken up from sedation crying from severe rectal pain. Was told they removed (14) polyps and biopsies a cecum mass. I was distraught to say the least. On top of this. He goes on to say he doesn’t know what could be causing me so much pain!!! ( I’m running on the lowest of lows with these pains)

My results from biopsy are still pending. My mind is in a dark overflowing state that I have never been in before. I try to stay positive but the pains continue to remind me something is wrong.

He told me if it was that bad to go to an emergency room. Which I did two days after the colonoscopy. They did a ct scan and was told they didn’t know what it was possibly a nerve and would need to go to pain management doctor.

I’m reaching out to this group at this moment out of desperation. Yes I’m freaked out about the possible results. Yes I’ve convinced myself of the worst. But most importantly I’m in continued pain. If I have a bowel movement my rectum feels beyond sore and burning sometimes for hours. My question is not only if you’ve had this? But how did you treat it? (So far it seems I’ve tried most conventional methods) I’m starting to feel like a freak and horribly ill if even the doctors tell me they don’t know why I’m getting these pains. Could this be from the mass?

I’m searching for anyone who may have experienced this.

Follow up: pathology confirmed its cancer. waiting on colorectal surgeon consult. Out of my mind scared and freaking out.
Dx - Cecum mass - age 35
Stage 1 (T2, N0, M0) - CEA level - 0.5
26 nodes negative
Right Colectomy 1/16/20
Currently investigating a 3.2 cm adrenal mass

galee
Posts: 23
Joined: Sat Aug 24, 2019 2:44 pm
Facebook Username: galeehardin@cox.net

Re: New member - scared & looking for tips

Postby galee » Mon Dec 30, 2019 10:03 pm

Those words...It is cancer...were the most daunting words I had ever heard...August 2019. I know now it is my life’s journey. One I would never have expected or have chosen. I will say there is such an abundance of HOPE! You have found an amazing resource of knowledge & support in this group. Ask questions. Fear is normal, but stay as optimistic as possible. If your abdominal/pelvic CT was unremarkable then that is a good sign. My doctors also ordered a chest CT before my surgery. Trust your intuition as you discern the next steps. I hope your consultation goes well. I had two - The second doctor brought me peace to move forward. Sending positive wishes from Virginia!
47 year old, Female
8/15/2019 Colonoscopy due to blood in bowels
8/20/2019 Pathology 3cm Adenocarcinoma
Recto-Sigmoid junction, 12 cm from anal verge
G2
MSS
BRAF, KRAS, NRAS Not Detected
CEA 1.8
9/23/2019 sigmoid & rectum colectomy plus left salpingo-oophorectomy, small intestine resection & appendectomy
9/30/2019 Pathology: T2N0M0, moderately differentiated adenocarcinoma (2.8cm), margins uninvolved

Punky44
Posts: 453
Joined: Mon Oct 01, 2018 4:29 pm

Re: New member - scared & looking for tips

Postby Punky44 » Tue Dec 31, 2019 2:14 am

I am sorry you find yourself here but you’ve really found a great place for information and support on this journey. When my mom was diagnosed in Oct 2018 I couldn’t even think straight for days/weeks—you can read some of my first posts here to see. The fear doesn’t necessarily go away but once you know more information and have a treatment plan you will start to feel more empowered. Make sure you are meeting with a board certified colorectal surgeon.

You can find one here:

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

What was your CT scan of in the ER? Abdomen and pelvis? Chest? Not finding anything is super good news here.

Have you had your CEA tested?

I hope you can find a way to manage your pain in the interim before surgery.
Caregiver to my amazing mom (68 at dx)
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
6/28/19 Reversal and port out
CEA 2.1; 1.9; 2.6; 2.8; 2.3; 2.4
Latest update: 6/20–Clear CT; 9/22—CEA 2.4

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

Malidosa
Posts: 35
Joined: Sun Dec 29, 2019 11:15 pm

Re: New member - scared & looking for tips

Postby Malidosa » Tue Dec 31, 2019 2:18 am

I actually had an abdominal ct scan in the ER two days after my colonoscopy I was in so much pain. My doctor has been using this report and said there were no marks of inflamed lymph nodes which is a good thing they say. But my doubts rise cause the CT didn’t even show the colon cancer that I was diagnosed with 4 days later :cry: so just having a lot of doubts.

Can’t seem to understand why the cancer didn’t show up on the scan but I’m supposed to trust the lymph nodes as unremarkable.
Dx - Cecum mass - age 35
Stage 1 (T2, N0, M0) - CEA level - 0.5
26 nodes negative
Right Colectomy 1/16/20
Currently investigating a 3.2 cm adrenal mass

boxhill
Posts: 641
Joined: Fri Apr 06, 2018 11:40 am

Re: New member - scared & looking for tips

Postby boxhill » Tue Dec 31, 2019 3:16 pm

Scans can only detect what they can detect. (That's not too helpful, right? :) ) Masses below a certain size, for example, are too small to be detected by PET and regular CT, but can be seen by MRI. Be that as it may, the absence of seriously enlarged lymph nodes is a very good thing, for now.

Regular CT scans were unable to detect my liver node(s)--one removed during initial surgery, and one still there to plague me--nor did they detect any enlarged lymph nodes after surgery (plenty before). But last December my sole MRI detected both a liver node and two seriously enlarged lymph nodes. Examination of the earlier CTs revealed that the enlarged lymph nodes were there in earlier scans, but not as large and harder to see.

I'm sorry you are in so much pain. As a total amateur, it seems unlikely to me that a cecum mass would be causing rectal pain, because it is usually described as lower right quadrant pain. You might want to search here for people's experience dealing with tenesmus pain, in case that is what you are experiencing.

If they have biopsied the cecum mass you should be getting some basic information about the tumor: BRAF, KRAS, MSS/MSI, adenopathy/mucinous, etc. When you see a surgeon, you should get a recommendation for what procedure will be used. Do NOT hesitate to get a second opinion, preferably from a major cancer center. IMHO, be as informed as you can in order to participate in the decision. (That does NOT include survival stats, which are most likely grossly inaccurate since they are based on old data about old treatments. The picture is much brighter now. :) )

BTW, the good news is that you are unlikely to be getting radiation, since you apparently don't have rectal cancer.
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
7/18 and 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: all fails but Celebrex
12/23/19 CT stable
5/19 MRI stable/NED
Stop Key
8/20 MRI NED

Malidosa
Posts: 35
Joined: Sun Dec 29, 2019 11:15 pm

Re: New member - scared & looking for tips

Postby Malidosa » Tue Dec 31, 2019 3:39 pm

Thanks for replying. It seems silly but just talking to anyone that has knowledge about any of this is helpful.

I’ve never had patience and this whole ordeal is testing that. I want it out now and that’s all I can think about. And unfortunately I’m told they won’t have staging until it’s removed. I’m currently waiting for the doctor to send me all the medical records they have so far. Just feel like I need to have some control and ability to see what’s going on for myself.

As far as the pain they think it might be neurological which is an entirely new concept to me? Hoping the colorectal surgeon can shed some light on this as well.

Any tips on prepping for surgery? How long were you recovering? Or out of work if you worked? Also any tips for getting out of the diagnoses funk? Like I’m so blue. I want to push forward but then it’s this crushing feeling takes over and I know that’s no way to be or live. Just so shocked.
Dx - Cecum mass - age 35
Stage 1 (T2, N0, M0) - CEA level - 0.5
26 nodes negative
Right Colectomy 1/16/20
Currently investigating a 3.2 cm adrenal mass

zephyr
Posts: 297
Joined: Thu Aug 18, 2016 7:31 am

Re: New member - scared & looking for tips

Postby zephyr » Tue Dec 31, 2019 5:08 pm

Malidosa wrote:Can’t seem to understand why the cancer didn’t show up on the scan but I’m supposed to trust the lymph nodes as unremarkable.


My GI doc wanted me to have a follow-up colonoscopy one year after my surgery. For a variety of reasons I didn't get around to it until about 18 months later. When I saw him, I casually mentioned that I figured with all the scans I was having, if there had been a problem in the colon, it would have shown up so I didn't make the colonoscopy a priority while in treatment. His answer: it doesn't work that way. I had a similar discussion with my primary care doc and gyn about a mammogram. Didn't have one because if there was anything wrong, surely it would have shown up on all those chest CTs I was having. They both said: it doesn't work that way.

I can't imagine what you're going through facing a cancer diagnosis AND severe pain with an unknown cause. One of those would have been more than enough for anyone but both at the same time is like a sucker punch. You're beyond scared and you're wiped out with pain. I wish there was something someone here could do to take away your fear or help with your pain but, to some extent, this is one of those things you have to do alone but with company at the same time. What I mean by that is that you need find that inner strength - that spark that awakens the fighter - to pull you out of the dark spaces, but you also need a community such as this one to listen, to make suggestion when appropriate, to let you know you're not alone, to give you hope. Sometimes just having someone listen is enough to save the day.

I think the best piece of advice I can offer from my own experience is this: don't get ahead of the data. It's really hard. You have a scan, you sit and wait for the report assuming the worst. Don't do that. Try to stay positive. Your mental attitude is part of the battle.

Be your own advocate. Yes, get your medical records and ask for copies of every blood test, every scan report, every surgical report, every pathological report, every everything going forward. You should have a duplicate set of your complete medical file at all times. Information is power and you may need those records at some point. Don't assume anything, ask questions.

If you live in a medical marijuana state, you might consider looking there for pain management. I never had the kind of pain you're experiencing so I can't really guide you there but I can tell you that it's helped me for back door pain such as anal fissures. If you want to PM me, I'll be happy to give you some tips on how I use it.

So far your news sounds hopeful. Try to focus on that. You can do this.

The whole community is here for you.
Nov-2009 Early stage CRC found during routine colonoscopy
2010, 2011, 2014 Follow up colonoscopies, all clear
Jun-2016 CRC found during routine follow up colonoscopy, surgery, Stage 4, KRAS, MSS, inoperable lung mets
Aug-2016-May-2018 Folfox, 5FU & Avastin, 5FU, Folfiri & Cyramza
Aug/Sep-2018 YAG laser surgeries (Germany) on both lungs, 11 nodules (9 mets) removed
Nov-2018 clean CT scan
Mar-2019 New lung nodules
Apr-2019 - ? Xeloda/Avastin, SBRT, continue Xeloda/Avastin

Malidosa
Posts: 35
Joined: Sun Dec 29, 2019 11:15 pm

Re: New member - scared & looking for tips

Postby Malidosa » Tue Dec 31, 2019 6:34 pm

Thanks. Z.

I appreciate the time you took to respond. Somehow talking to strangers has become soothing. Especially ones that have even just a small bit of information to share as this is all new for me.

I actually do live in a state that allows the usage of marijuana. Initially when the symptoms started many people joked about getting me some. I’ve just never tried or used it to know anything about it.

I’d walk into a dispensary like a deer in headlights.

It’s the waiting that just kills me. I called the surgeon and the lady at by the front desk gave me an appt for the 10th that just seems way too far? Like we are talking about ones life. I called my doctor and demanded that they call this surgeons office for a sooner appt. I’m like this is totally unacceptable this is just for a consultation.

Of Course surgeons office is closed today and tomorrow. Ugh. I’m a problem/solution type person.
Dx - Cecum mass - age 35
Stage 1 (T2, N0, M0) - CEA level - 0.5
26 nodes negative
Right Colectomy 1/16/20
Currently investigating a 3.2 cm adrenal mass

Utwo
Posts: 270
Joined: Mon May 23, 2016 10:14 am
Location: T.O.

Re: New member - scared & looking for tips

Postby Utwo » Tue Dec 31, 2019 8:39 pm

Malidosa wrote:Any tips on prepping for surgery?
First you need to determine a type of a surgery. Most common types are:
1) Colonoscopic surgery
2) Laparoscopic surgery
3) Open surgery

Malidosa wrote:How long were you recovering?
Or out of work if you worked?
Recovery depends on a type of a surgery.
1) Colonoscopic surgery - half a day
2) Laparoscopic surgery - a week or more
3) Open surgery - few weeks or more

Malidosa wrote:Also any tips for getting out of the diagnoses funk?
Don't panic.
Accept what you can not change.
58 yo male at diagnosis: T1bN0M0, 0/15 nodes, low grade/moderately differentiated adenocarcinoma
03/2016 colonoscopy: 2 small polyps removed in left colon; CEA = 1.3
04/2016 colonoscopy: caecum sessile 3.5 cm polyp piecemeal removed with kind of clear margins
05/2016 "prophylactic" laparoscopic right hemicolectomy - bleeding, leak, infection
06/2017 CT scan, colonoscopy OK; CEA = 1.6
A lot of funny stuff discovered by CT scans in liver, kidney, lungs, arteries, gallbladder, lymph node, pancreas

boxhill
Posts: 641
Joined: Fri Apr 06, 2018 11:40 am

Re: New member - scared & looking for tips

Postby boxhill » Wed Jan 01, 2020 8:46 am

Malidosa, most of us can totally identify with what you are feeling right now. People have even coined a word for the special agony of waiting for scans and scan results: scanxiety. :)

I consider myself lucky that I had to have emergency surgery, so the elapsed time between getting a cancer diagnosis after an ER CT and prepping for surgery was something like 4 hours! I didn't have time to research or anything. (That came afterward.) I was stunned. I think I actually laughed and said, "You're kidding me!" They had told me they were looking for appendicitis. I had had a clean colonoscopy 8 years before.

After surgery, I had to wait a few days to discover the stage and other details. I adopted a philosophy that I wasn't going to freak out about anything before I knew I needed to. As someone said above, "Don't get ahead of the data."

You will deal with things as they arise. You sounds like the kind of person who will feel more powerful and in control as you gain solid knowledge of your own disease and general knowledge. Definitely get copies of all reports, either online or in hard copy. While you are researching, remember that survival stats are compiled looking backward, and much of the cohort didn't have access to today's treatments. Jacques can point you to lists of things to read from reputable sources and a list of things you need to find out.

I know how debilitating constant pain is. I've been struggling with it as a side effect of Keytruda since the spring. It really can eat you alive. You may need to find someone, like your PCP, who will aggressively pursue that for you as a priority issue, rather than focusing on cancer. It is my understanding that if you go to an official dispensary they can help you based on your particular problems. There are many specialized strains and preparations these days. You may need to get a card from one of your doctors to get access. Definitely consider acupuncture: it is very effective for nerve issues. If you need to, get drugs that work for you. Try not to get frustrated with well-meaning people who say that if you only took or did X, your problem would be solved. They might be (partially) right. :)
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
7/18 and 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: all fails but Celebrex
12/23/19 CT stable
5/19 MRI stable/NED
Stop Key
8/20 MRI NED

Deb m
Posts: 558
Joined: Tue Jan 14, 2014 10:08 am

Re: New member - scared & looking for tips

Postby Deb m » Thu Jan 02, 2020 12:21 pm

Hello and welcome to the board. First of all let me say that I'm sorry this is happening to you. Your DX sounds very similar to my husbands was 9 years ago. My husbands tumor was found via colonoscopy. His tumor was in his cecum and grew out towards his appendix which is why he was having pain. At first they thought it was an appendicitis. The tumor it's self also didn't show on the ct scan he had in the ER. The scan did show some inflammation in his intestine so they know something wasn't correct, but never thought it was cancer initially till the scope proved it was! He had his cecum removed along with his appendix, 15 inches of assessing colon, 34 lymph nodes and a lot of surrounding tissue. That was followed up with 12 hits of folfox. He has been cancer free since surgery.

Remember that colon cancer is a very slow growing cancer, so don't feel hurried. When it comes time for surgery, be sure it's a board certified colorectal surgeon. It can make all the difference in the world. Also don't be afraid of second opinions, they almost always prove to be beneficial in some way. Be sure that a CEA level is obtained before surgery and then again after. Also, on you visits to the many doctors you will meet in the upcoming months, take somebody with you that can help you with questions and take notes.

This board is a Hugh source of valuable information. I know things seem way out of control now and that the walls are closing in. Things will settle down. Just take one day at a time. Let me know if there is any way I can help.

You will be in my prayers,

Deb

Malidosa
Posts: 35
Joined: Sun Dec 29, 2019 11:15 pm

Re: New member - scared & looking for tips

Postby Malidosa » Thu Jan 02, 2020 5:28 pm

Hi Deb thank you for taking the time to respond. It helps hearing similar stories. Was that the only symptom your husband had? So far based on what I've read I didn't have any of the standard symptoms that people describe. Just genuine hemorrhoid feeling pains and my mass is the my right side?

I have a meeting with the colorectal surgeon tomorrow. Kind of feeling overwhelmed with what to ask. I can only think of one thing and that is that I want it out and I want whatever steps I need to take to kill this SOB to start. I know I need to be patient and it doesn't grow fast, but I just feel like i'm in complete shock.

I found out my diagnosis 4 days ago and I still am not sure how to process it. I'm not really sure how people do. Everyone here seems to be so peaceful but I'm feeling like my world is spinning and spinning. I hope I can come to terms with it at some point. But so far its a flat out nightmare.
Dx - Cecum mass - age 35
Stage 1 (T2, N0, M0) - CEA level - 0.5
26 nodes negative
Right Colectomy 1/16/20
Currently investigating a 3.2 cm adrenal mass

Deb m
Posts: 558
Joined: Tue Jan 14, 2014 10:08 am

Re: New member - scared & looking for tips

Postby Deb m » Fri Jan 03, 2020 10:23 am

Malidosa,

How your feeling now is completely normal. I also understand the feeling that till you have surgery or start treating this beast, you fell like it's growing and taking over you completely and you just want it out! I felt the same way with my husband. I hated the waiting! Once he had the surgery and we started chemo, even though it was hard seeing him go thru all of that, I felt better because we were beginning to fight it. You will I think feel that way as well.

As far as his symptoms before hand, he started having some pains in his lower abdominal area. As I state before, they initially though it was an appendicitis. A few weeks before all of that, he did have some bloating and irregular bowel movements. He would go from constipation to diarrhea and back and forth. He said he felt like he was never fully emptying after a bowel movement. We really didn't think much about it at the time, but in hindsight, they were definitely all symptoms.

We live in a very rural area in Kansas and the hospital nearest to us was not that great and we didn't trust their opinion on treatment and surveillance. We sought a second opinion from MDA in Houston Texas. It was the best thing we ever did. I don't know where you live, but if your not near a major cancer center and your not comfortable with the doctors, then see if you can get a opinion from a major cancer center. Our oncologist at MDA communicated with the oncologist at our local hospital and he pretty much follow his orders. He received all of his treatments locally under the supervision and orders of the oncologist at MDA. We would travel back and forth to MDA for surveillance visits. Many people who live in rural areas do this type of thing. I think it's important to trust and have confidence in your care team.

My husband ended up being a stage IIbt4a. His mass was 3.7cm long. His cells were moderately differentiated and he was positive for LIV(meaning cells were found in his lymph channels/veins, but not nodes. All of these characteristics put him in a high risk category for re- occurrence. I am happy to say that he has been cancer free for 9 years now. I never though we would get to that point in the beginning. It was so overwhelming having all this in front of us and I really didn't think I was going to make it thru. My husband also lost his job so we were with out income at that time and were raising two boys age 11 and 12. It was stress on top of stress! I'm here to tell you that you can make it thru this. My best advice at this time is to just take one day at a time and try not to panic. Things will settle down. I do hope that you have somebody who can help you, a support system, but if not, were here for you and will help you all we can.

I'm am so happy to help you.Please keep me/us posted on everything or just chime in to vent if you need to.!

God bless,

Deb

DarknessEmbraced
Posts: 3524
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: New member - scared & looking for tips

Postby DarknessEmbraced » Sat Jan 04, 2020 11:44 am

Welcome to the group and I'm sorry you're dealing with this!*hugs* Back in 2014 when I was diagnosed I was also in a lot of pain and I also had rectal bleeding. It was really hard to wait for CT scan results and then wait a short while for surgery. I hope you won't have to wait much longer! *hugs*
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

CF_69
Posts: 109
Joined: Sat Dec 22, 2018 9:44 pm

Re: New member - scared & looking for tips

Postby CF_69 » Sat Jan 04, 2020 2:50 pm

You can beat this.
47 at diagnosis
Rectosigmoid junction
Adenocarcinoma
2.8 x 1.8 x 3.5 cm
G2
T3N0M0
CEA:
December 2018 - 1.9
September 2019 - 2.5
March 2020 - 2.3
September 2020 - 2.5
Xeloda / radiation x 25
Laparoscopic LAR April 2019
0 of 12 nodes
Stage 2A
4 cycles of adjuvant Xeloda
MRI on liver for 2mm hypodensity not suspicious.
Clear CT - September 2019
Clear CT - October 2020


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