Single Mom, Newly Diagnosed, Need Support

[kartusch]

Hey folks. First time poster here. 37 year old female. I'm walking this path alone. I am a single-mom with full-time custody to a 7 year old daughter whom I am also homeschooling. With COVID, I literally go days without seeing another adult or speaking to one. Would love to get out of my brain and feel some support. Bit of a story but I will keep it brief. My hope is to gain perspective from others who have walked a similar path to mine. Looking for wisdom or tips. Things to consider. You get the idea..

Summer 2018 - Experienced extreme itching. Mostly legs and arms, a bit of the trunk area. No welts or rashes, healthy eater (vegetarian for 20 years), cut out all things that could have been in question. Pursued with docs. Got to a CT scan where they saw the mass in the transverse colon. They thought it might be stool. And I dropped it because the itching stopped. And they dropped it also. Did not push for anything further.

Late October, 2020 - Extreme upper abdominal pain, massive amounts of belching, nausea, lack of appetite. Symptoms like I've never experienced before. Followed by three days of no symptoms but fatigue. Followed by 5 days of constipation, lower abdominal pain, fatigue, shakiness, clammy, etc.

Nov. 3rd, 2020 - Symptoms got worse. ER visit. EKG, Blood workup, and CT scan. Mass detected again (different medical institution) in the transverse colon, all other areas were clear. Colon cancer was discussed, colonoscopy scheduled.

Nov. 10th, 2020 - Colonoscopy. 3mm sessile polyp removed from the ascending colon. The mass (a tubulovillous adenoma) was found in the proximal transverse colon. 4cm in length. 6mm in diameter. Pathology from biopsy showed no evidence of high-grade dysplasia or adenocarcinoma, though this is likely due to sampling error.

Nov. 12th, 2020 - Met with general surgeon whom I was referred to. Suggested right hemicolectomy. Said that there are "advanced surgeries" but that I am not a good candidate. Did not offer details, even the name of these advanced surgeries. I went digging. Questioned the gastroenterologist. His explanation was that the mass was too big to qualify for another option.

Nov. 13th, 2020 - CT scan of chest. Clear. I had docs forward medical records to another medical institution with highly specialized colorectal surgeons.

Nov. 19th, 2020 - Signed paperwork for right hemicolectomy surgery with general surgeon. Scheduled for Dec. 2nd.

Nov. 24th, 2020 - Consult with 2nd medical institution. Discussed options. Needed color photos. Acquired them and delivered them.

Nov. 27th, 2020 - 2nd medical institution indicated to me that after discussing with team, an Endoscopic Mucosal Resection is warranted. Cancelled surgery with 1st medical institution. Awaiting scheduler to call me (hopefully tomorrow).

In the meantime, I am also having constant pain in my right abdomen, almost underneath the bottom part of my ribs. 36 hours straight now.

So I guess that's the "brief" summary. Would love to hear from other people with similar experiences of any kind. Type of mass, EMR vs. surgery, idiot doctors, any of it.

[CRguy]

Wishing you all the best in getting a plan together for moving forward.

Just wanted to bump your topic up so others may have more info to add.

In Harmony on the Journey
CRguy

[Lee]

Okay, where are you?? USA or some other country?

If in USA, again where are you? My advice, a 2nd opinion at a major cancer research/cancer hospital.

Know there is hope.

Lee

[Green Tea]

Have you seen this article on EMR?

http://www.sease.com/polyp/emr.html

[kartusch]

Thanks for the bump and responses. I was beginning to feel like there was no support here to be found. Or maybe I was too lengthy in my post?

I am in the US, in PA. I started out with the local medical institution and my second opinion was through Hershey (whom I am now working with).

They finally scheduled me for January 7th. Which seems like years and years from now. I'm trying to calm myself down but that seems like such a long wait. Is that normal? Should I take solace in the fact that the doc said I could wait that long?

We discussed EMR vs. ESD. Basically said that depending on what happens when they are in there, that either option may end up happening. I have seen that article and it gives me great hope. I am just struggling with waiting right now. As well as holding it together for my daughter. I feel like I am a super disassociated vessel of a human being around her. Totally not fair to her.

[utahgal7]

Hi,

I would have to agree with Lee. If you can get treated at a major cancer center, that would be a good idea. Do you live in the U.S? MD Anderson Cancer Center (Houston) and Memorial Sloan Kettering (NY) are two of the top cancer hospitals in the U.S.

I don't have experience with your particular type of cancer (mine was rectal cancer). As far as doctors go, you and your doctor need to be on the same page or the relationship will not work. If you disagree with your doctor, find another one. Also, many people on this forum have advised to never take oncology advice from a surgeon and to never take surgical advice from an oncologist.

Sorry to be the bearer of bad news, but cancer SUCKS! You will soon find out who your true friends are. Now is the time to lean on your family. Be very clear with your family about what you need. Don't be afraid to ask for help. Most people want to help but don't know how to help. I apologize in advance if this is too intrusive of a question, are you friendly with your child's father? If the relationship is NOT abusive, dangerous, or otherwise harmful, you might want to think about seeking his help.

Good luck to you. The people on this forum are wonderful. Don't be afraid to ask any questions!

[roadrunner]

It isn’t entirely clear to me that this is cancer. The pathology was tubovillous adenoma with no evidence of adenocarcinoma or even high grade dysplasia. I’d be interested in why there is a view that this negative finding “is likely due to sampling error,” whose view that is, and what it is based on. Perhaps I’m missing something, but that seemed to be the situation.

[utahgal7]

Sorry, I presumed you had cancer. I am not completely versed with medical terminology.

My apologies, please forgive me.

[Lee]

Sorry, I presumed you had cancer. I am not completely versed with medical terminology.

My apologies, please forgive me.

I am still assuming it is cancer (I am not an MD). What has got me, no game plan. It seem like they are all over the place on how to remove this mass. They are all over the place on a lot of things with this person. Thus my opinion, go to a major cancer hospital for a 2nd opinion.

This was a few years back, daughter took mom to local hospital. They found a mass, local surgeon removed it & left her with a temporary colostomy. Problem was surgeon did not do it right. Surgeon did not know about ostomy nurses either. Anyway, it was one problem after another. We recommended getting her mom to a cancer hospital. Daughter found a place & mom was moved there. That surgeon had to go back in & fix what the 1st surgeon had messed up on.

Thus my comments, where are you? Maybe a local hospital here in the USA or a hospital outside of USA. I would not want surgery done on me with what OP is stating. I would want a 2nd opinion.

JMHO,

Lee

[Lee]

Thanks for the bump and responses. I was beginning to feel like there was no support here to be found. Or maybe I was too lengthy in my post?

I am in the US, in PA. I started out with the local medical institution and my second opinion was through Hershey (whom I am now working with).

They finally scheduled me for January 7th. Which seems like years and years from now. I'm trying to calm myself down but that seems like such a long wait. Is that normal? Should I take solace in the fact that the doc said I could wait that long?

We discussed EMR vs. ESD. Basically said that depending on what happens when they are in there, that either option may end up happening. I have seen that article and it gives me great hope. I am just struggling with waiting right now. As well as holding it together for my daughter. I feel like I am a super disassociated vessel of a human being around her. Totally not fair to her.

Okay, just saw this. Do they know if it is cancer or not? Yes that seems like a long wait, maybe the virus has something to do with it. I suspect if they think it is cancer, they would do surgery sooner. Have they told you what the mass is?

Lee

[Green Tea]

My view is that this is a large sessile polyp that was too large to be removed by polypectomy during the recent colonoscopy, so it needs to be removed by some other means. It needs to be removed because it is tubulovillous architecture and therefore a pre-cancerous polyp.

The EMR procedure can be used to try to scoop the "mass" out, but it might not be entirely successful. The polyp might grow back in the same place in a few months or in a few years. If that happens, then there would be no choice but to remove the new polyp by resection such as hemicolectomy because a second EMR would not work due to all of the scar tissue left by the first EMR.

This is just my impression. I think it's worthwhile trying EMR as long as the doctor doing the procedure is well-trained and highly skilled in using this kind of equipment.

It would be interesting to know just how many successful EMR procedures he has done in the past.

[kartusch]

I don't know how to quote previous posts or reply to specific people so pardon me (and if there's a tip, I'll take it!).

So, the explanation I was given by the initial GI was that he is confident it is 100% precancerous, and based on imagery he is confident it is 90-something-% cancerous. He was the one pushing hemicolectomy. Hence the second opinion where I was offered the EMR/ESD option.

The biopsy was done by the GI at the first hospital, and it did not show cancer. The way it was explained to me by them was that it's like sticking a needly in a boston creme donut. In that, it could have just been that the sample they took did not pick up any cancerous cells.

Interestingly, the communication between the docs at Hershey also stated that the biopsy sample taken was small.

The docs at Hershey are all board-certified, specialized colorectal surgeons. I asked about proficiency with EMR/ESD and they are indeed skilled.

[Green Tea]

I don't know how to quote previous posts or reply to specific people so pardon me (and if there's a tip, I'll take it!).

Tip:
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=63226&p=497684#p497684

Hershey PA

[Lee]

My view is that this is a large sessile polyp that was too large to be removed by polypectomy during the recent colonoscopy, so it needs to be removed by some other means. It needs to be removed because it is tubulovillous architecture and therefore a pre-cancerous polyp.
.

Thank you, now I understand what is going on. "Pre-cancerous polyp". I was thinking cancer cells inside the polyp.

Lee

[kartusch]

I don't know how to quote previous posts or reply to specific people so pardon me (and if there's a tip, I'll take it!).

Tip:
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=63226&p=497684#p497684

Hershey PA

Thanks!

I also checked that link to Hershey. Interestingly, only one of the docs that I am using is listed. There are others not listed, so I'm not sure if that is a list that is regularly updated?