So Confused

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Marylandmaniac
Posts: 234
Joined: Wed Jun 29, 2016 6:22 pm

So Confused

Postby Marylandmaniac » Wed Jul 13, 2016 6:46 pm

SO I was diagnosed with colon cancer June 29th after a colonoscopy. I am 46 and only had some rectal bleeding at the end of April and went in to see a GI. He thought hemorrhoids but because my dad died of esophageal cancer 2 years before he was concerned and wanted to do full scope. I was thinking just a screening and wasn't in a rush. I was shocked. Got blood work done and CEA level is 8.6. Got a CT scan and they said tumor is contained and no lymph node activity. GI seemed to think this great news and referred me to a surgeon. Also wanted me to get MRI which is scheduled for early next week. I just saw surgeon who turns out to be a general surgeon though a very highly respected one. Right there I knew I was not in best hands. All he had was GI's report and did not have CT scan. Basically made it sound much more serious and that I should go to Hopkins. He did an internal exam and said he felt a small bump that was probably another tumor closer to the anus. ??? How the hell would you know this? I was so shocked I completely forgot that I have had a small bump between my vagina and anal wall that I have had for over 15 years that my OBGYN had checked out back then and ruled was nothing. Remembered it on the way home. Obviously I am going to talk to my GI tomorrow and go see a colorectal surgeon who knows what he is talking about and has all he facts in front of him before he scares the hell out of me.
How do you deal with so much uncertainty and how do you know who to trust?
DX 6/29/16 7 cm tumor, 10 cm fr av
CT scan ab,MRI abdomen - 9mm spot on liver,CT scan of chest lungs clear
Special staging MRI - clinical staging stage 3b - T3N2M0 (unless spot proves to be met)
8/11 PET scan - spot lit up not nodes
8/16 Port in, 8/17 liver microwave abltn - spot gone
8/23 6 rds FOLFOX started
PET scan 10-13 43% red of tumor and no mets shown
Exam tumor greatly reduced. Surgery 12-14-16.
Clear margins, 7 out of 13 nodes positive. Tumor 2.1 cm
Kras wild, MMS, not MSI. 6 more rds FOLFOX

Nik Colon

Re: So Confused

Postby Nik Colon » Wed Jul 13, 2016 7:17 pm

Sorry :( yes, get a board certified crc surgeon and all scans done first. Best wishes

Big Jay
Posts: 35
Joined: Fri Jun 17, 2016 5:41 pm
Location: Baltimore, MD

Re: So Confused

Postby Big Jay » Wed Jul 13, 2016 7:59 pm

Ugh, this not knowing stage it terrible enough w/o the docs screwing around. I'm so sorry for you.

In my personal experience: the GI doc said my tumor was barely 2cm from the "dentate line" which almost certainly meant I'd have a permanent colostomy. However, the MRI and CT scan confirmed it was 9cm from the anal verge which means sphincter sparing. From my conversations my rectal surgeon, and another one, they have a pretty dim view of GI docs when it comes to these things. However, they are surgeons so they tend to have a dim view of non-surgeons.

Whoever ends up doing the surgery will want to actually see the thing for themselves so they'll at least bring you in for a sigmoidoscope if they can't poke at it with their finger. This'll give them a good idea what you're dealing with.

How do you know who's the best doctor? I've no idea. I've been going the Hopkins route from the beginning and, after the cancer diagnosis, I was just assigned to Dr. Bashar Safar who will be my surgeon. My wife's a pharmacist and, through her nurse contacts, we were able to get some background info and all have said he's excellent. So, I'll stick w/ him. Is the the best? Boy I hope so...

BTW, I'm also a mechanical engineer from MD. I've not worked in actual engineering for a while but did work for Henry Adams from '97-'02 and I still keep up w/ PDHs so we've probably crossed paths at an ASHRAE meeting or two.
DX at 45yo 6/9/16, 2.4cm tumor, 9cm from Anal Verge, 6/27/16
Clinical staging IIIC, CEA 3.1 7/1/16
30x Chemorad 8/5/16 - 9/16/16
CT/MRI/Scope => CCR 11/1/16... Rolling the dice on Watch & Wait
Snake Eyes: Tiny regrowth at scar 11/1/17
LAR 1/17/18: Path = 3mm tumor, 0/12 nodes Med Onc doesn't recommend chemo.
Reversal 4/17/18

Nik Colon

Re: So Confused

Postby Nik Colon » Wed Jul 13, 2016 8:11 pm

Big Jay wrote:Ugh, this not knowing stage it terrible enough w/o the docs screwing around. I'm so sorry for you.

In my personal experience: the GI doc said my tumor was barely 2cm from the "dentate line" which almost certainly meant I'd have a permanent colostomy. However, the MRI and CT scan confirmed it was 9cm from the anal verge which means sphincter sparing. From my conversations my rectal surgeon, and another one, they have a pretty dim view of GI docs when it comes to these things. However, they are surgeons so they tend to have a dim view of non-surgeons.

Whoever ends up doing the surgery will want to actually see the thing for themselves so they'll at least bring you in for a sigmoidoscope if they can't poke at it with their finger. This'll give them a good idea what you're dealing with.

How do you know who's the best doctor? I've no idea. I've been going the Hopkins route from the beginning and, after the cancer diagnosis, I was just assigned to Dr. Bashar Safar who will be my surgeon. My wife's a pharmacist and, through her nurse contacts, we were able to get some background info and all have said he's excellent. So, I'll stick w/ him. Is the the best? Boy I hope so...

BTW, I'm also a mechanical engineer from MD. I've not worked in actual engineering for a while but did work for Henry Adams from '97-'02 and I still keep up w/ PDHs so we've probably crossed paths at an ASHRAE meeting or two.

Here is some info on your doc.

http://www.hopkinsmedicine.org/profiles ... shar-safar

http://health.usnews.com/doctors/bashar-safar-660339

https://www.doximity.com/pub/bashar-saf ... empted=yes

https://www.healthgrades.com/physician/ ... afar-y4gw8

Nik Colon

Re: So Confused

Postby Nik Colon » Wed Jul 13, 2016 8:17 pm

Marylandmaniac wrote:SO I was diagnosed with colon cancer June 29th after a colonoscopy. I am 46 and only had some rectal bleeding at the end of April and went in to see a GI. He thought hemorrhoids but because my dad died of esophageal cancer 2 years before he was concerned and wanted to do full scope. I was thinking just a screening and wasn't in a rush. I was shocked. Got blood work done and CEA level is 8.6. Got a CT scan and they said tumor is contained and no lymph node activity. GI seemed to think this great news and referred me to a surgeon. Also wanted me to get MRI which is scheduled for early next week. I just saw surgeon who turns out to be a general surgeon though a very highly respected one. Right there I knew I was not in best hands. All he had was GI's report and did not have CT scan. Basically made it sound much more serious and that I should go to Hopkins. He did an internal exam and said he felt a small bump that was probably another tumor closer to the anus. ??? How the hell would you know this? I was so shocked I completely forgot that I have had a small bump between my vagina and anal wall that I have had for over 15 years that my OBGYN had checked out back then and ruled was nothing. Remembered it on the way home. Obviously I am going to talk to my GI tomorrow and go see a colorectal surgeon who knows what he is talking about and has all he facts in front of him before he scares the hell out of me.
How do you deal with so much uncertainty and how do you know who to trust?

Hopkins link to search drs.
http://www.hopkinsmedicine.org/profiles/index.html

Colon and Rectal search
http://www.hopkinsmedicine.org/profiles/results/search/

Search in MD
https://www.healthgrades.com/colon-surg ... d-maryland

Another you can search by state
http://health.usnews.com/doctors/locati ... l-surgeons

prs
Posts: 167
Joined: Sat Dec 12, 2015 7:09 pm
Location: Central California

Re: So Confused

Postby prs » Wed Jul 13, 2016 8:39 pm

Marylandmaniac, do you have rectal or colon cancer? They are not the same and the treatments are different. IMHO you need to put your engineer cap back on and start from basics to figure out what you have, and then how to get the best treatment.

Ideally you want a treatment center with a "Tumor Board" that may consist of an oncologist, a radiation oncologist, and a board certified colorectal surgeon. Working together these experts would determine your optimum treatment plan.
Peter, age 65 at dx
DX 4 cm x 4 cm very low rectal adenocarcinoma into the sphincters 01/15
Stage III T3 N1 M0 with two suspicious lymph nodes
26 sessions IMRT radiation with 1,000 mg Xeloda twice per day 03/15 to 04/15
Complete clincal response to the chemoradiation...the tumor shrank completely away 06/15 :D
No surgery...Habr-Gama watch and wait protocol instead
Xelox chemotherapy 07/15-12/15
MRI and rectal exam every three months starting 07/15
MRI and rectal exam every six months starting 07/17
NED

Nik Colon

Re: So Confused

Postby Nik Colon » Wed Jul 13, 2016 8:48 pm

PRS wrote:Marylandmaniac, do you have rectal or colon cancer? They are not the same and the treatments are different. IMHO you need to put your engineer cap back on and start from basics to figure out what you have, and then how to get the best treatment.

Ideally you want a treatment center with a "Tumor Board" that may consist of an oncologist, a radiation oncologist, and a board certified colorectal surgeon. Working together these experts would determine your optimum treatment plan.

From their first post. 7cm mass in my rectum about 10 cm from my anus

User avatar
Marylandmaniac
Posts: 234
Joined: Wed Jun 29, 2016 6:22 pm

Re: So Confused

Postby Marylandmaniac » Wed Jul 13, 2016 8:52 pm

WHat I have from the CT scan and colonoscopy is it is in distal sigmoid, proximal rectum around 10 cm from anal verge. GI said colon but surgeon said rectal. I just got some good referrals from friends in medical field and am talking to doctor tomorrow about getting my results sent to them and to get in quickly. Do most of you go through GI or just have all your tests and go on your own?
DX 6/29/16 7 cm tumor, 10 cm fr av
CT scan ab,MRI abdomen - 9mm spot on liver,CT scan of chest lungs clear
Special staging MRI - clinical staging stage 3b - T3N2M0 (unless spot proves to be met)
8/11 PET scan - spot lit up not nodes
8/16 Port in, 8/17 liver microwave abltn - spot gone
8/23 6 rds FOLFOX started
PET scan 10-13 43% red of tumor and no mets shown
Exam tumor greatly reduced. Surgery 12-14-16.
Clear margins, 7 out of 13 nodes positive. Tumor 2.1 cm
Kras wild, MMS, not MSI. 6 more rds FOLFOX

Nik Colon

Re: So Confused

Postby Nik Colon » Wed Jul 13, 2016 9:07 pm

Marylandmaniac wrote:WHat I have from the CT scan and colonoscopy is it is in distal sigmoid, proximal rectum around 10 cm from anal verge. GI said colon but surgeon said rectal. I just got some good referrals from friends in medical field and am talking to doctor tomorrow about getting my results sent to them and to get in quickly. Do most of you go through GI or just have all your tests and go on your own?

Image
Image
I went to GI for colonoscopy, GI set me up to see surgeon, after that surgeon set up all my scans, etc. Sent to onc, was part of the team. But I only liked my surgeon. I now go to different onc, but this was after my surgery.

AbbyDoo
Posts: 134
Joined: Wed Jun 29, 2016 2:25 am
Location: So.Ca.

Re: So Confused

Postby AbbyDoo » Wed Jul 13, 2016 11:59 pm

I'm sorry you had to join our little club.
Initial staging is one of the hardest parts of having cancer. I can't imagine how you feel working with someone who is not qualified enough to help you.
Please look into a place that specializes in cancer and could put a team together for you. It's real important to like and trust your team , your going to see them a lot over the next year.
I was lucky to have Kaiser for insurance and really like my medical team. All my test are sent to each member and they communicate with each other. Example today I had a colonoscopy, I have only met him once before. He was the one to find my tumor in last colonoscopy. Today he said hi I have been waiting for and have been following your treatment. I had no clue I forgot about him.
If you have not already go out and get some spiral note books. Maybe three of them.
1 for surgeon notes and questions
1 for radiation Onc
1 for medical Onc
You can also track your mileage and expenses for taxes.
Try to stay positive this is just a bump in life that you can overcome.
53 yrs old
4/30/15 colonoscopy Mass found
5/21/15 staged 3 C rectal cancer
7/3/15 finished xeloda and radiation 28 rounds
9/30/15 LAR
10/29/15 picc line installed
11/2/15 start chemo 5 fu Oxaliplatin
3/7/16 Finish Chemo
4/29/16 Ileostomy Reversal.
7/13/16 colonoscopy clear.
CRC survivors know there Sh%t

User avatar
Marylandmaniac
Posts: 234
Joined: Wed Jun 29, 2016 6:22 pm

Re: So Confused

Postby Marylandmaniac » Thu Jul 14, 2016 5:19 am

Thanks Nik and Abby,

The diagram helps me get a sense where this is. Is the type of cancer the same whether in rectum, sigmoid or colon? Is it just the treatment approach that differs?

Abby, I have a spiral notebook now that I keep everything. I also use it to keep track of what vitamins and supplements I am taking because I find I lose track. I am taking Cimetidine now after reading about on here and then researching it myself.

It is so stressful right now because I feel like I still don't know what I am dealing with. I thought after my scans that things were looking good (or as good as you can have with cancer). But after talking to this surgeon I have no idea now.
DX 6/29/16 7 cm tumor, 10 cm fr av
CT scan ab,MRI abdomen - 9mm spot on liver,CT scan of chest lungs clear
Special staging MRI - clinical staging stage 3b - T3N2M0 (unless spot proves to be met)
8/11 PET scan - spot lit up not nodes
8/16 Port in, 8/17 liver microwave abltn - spot gone
8/23 6 rds FOLFOX started
PET scan 10-13 43% red of tumor and no mets shown
Exam tumor greatly reduced. Surgery 12-14-16.
Clear margins, 7 out of 13 nodes positive. Tumor 2.1 cm
Kras wild, MMS, not MSI. 6 more rds FOLFOX

rp1954
Posts: 1526
Joined: Mon Jun 13, 2011 1:13 am

Re: So Confused

Postby rp1954 » Thu Jul 14, 2016 5:22 am

A cancer diagnosis has many unknowns and uncertainties, some of our answers have only resolved after a year, two, and more. These are the critical four steps that were necessary for us, for surgery and extra success.

1. Find the cimetidine and supplements, starting ASAP as aquired. (links repeated as you asked)
2. Baseline blood tests, before surgery ........................(follow the links on the linked posts)
3. Scan(s)
4. choosing the certified colorectal surgeon.
....
The cimetidine and supplements actually gave us more time to shop because they caused an intense immune reaction pre-op that the extra time probably worked to our favor with the cimetidine and supplements acting.

All else can be sorted out later. I'm not sure now, whether it started before or after surgery, but 0.6 - 0.8 mg olanzapine (splitting or grinding and redividing) seemed to take care of some important free floating anxieties with minimal interference. Of course, this latter drug choice is very person, situation and dr dependent.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper to almost nothing mid 2018, mostly IV C

User avatar
Marylandmaniac
Posts: 234
Joined: Wed Jun 29, 2016 6:22 pm

Re: So Confused

Postby Marylandmaniac » Thu Jul 14, 2016 5:52 am

Thank you RP,
I have started the Cimetidine and the modified citrus pectin along with multivitamin and D3. Those seemed the most important. Did you use the primary and the secondary list that was on the link to Life Extension? It seems like so much to take. Did you find anything that combined some of these supplements into one bottle/pill or did you buy all the supplements separate and then take individually?
DX 6/29/16 7 cm tumor, 10 cm fr av
CT scan ab,MRI abdomen - 9mm spot on liver,CT scan of chest lungs clear
Special staging MRI - clinical staging stage 3b - T3N2M0 (unless spot proves to be met)
8/11 PET scan - spot lit up not nodes
8/16 Port in, 8/17 liver microwave abltn - spot gone
8/23 6 rds FOLFOX started
PET scan 10-13 43% red of tumor and no mets shown
Exam tumor greatly reduced. Surgery 12-14-16.
Clear margins, 7 out of 13 nodes positive. Tumor 2.1 cm
Kras wild, MMS, not MSI. 6 more rds FOLFOX

rp1954
Posts: 1526
Joined: Mon Jun 13, 2011 1:13 am

Re: So Confused

Postby rp1954 » Thu Jul 14, 2016 6:01 am

We used the Life Extension cancer lists of several years ago as starting points. LEF several years ago listed more generic versions of some things, and we prefer that. Some things we go radically higher. We used less curcumin because of the hassle. Getting going is #1.

....did you buy all the supplements separate
Separate, or we do the mixing. It's also cheaper and more flexible that way. It's a lot more than one pill, many parts can be put into protein shakes, etc. Although there are now multivitamins with leucovorin (folinic acid) or natural folate, be warned the folic acid common in most multivitamins (and fortified grain products and bread) is incrementally toxic while on chemo.

Yes, it's a lot and you develop routines for efficiency. Many people find a bar with shelves or counter space dedicated for bottle trays and convenience. Travel with time specific pill tubs in a purse is an option too.

...and how do you know who to trust?
Reading and multiple interviews at each point, even multidisciplinary interviewing. Maybe friends and family. Scheduling 2-3 dr interviews ahead, instead one becomes an art to reduce total elapsed time. Also extra expense right now can be an investment.

We trust most what we can measure and observe, compared with the literature.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper to almost nothing mid 2018, mostly IV C

Newmol
Posts: 34
Joined: Mon May 16, 2016 4:36 am

Re: So Confused

Postby Newmol » Thu Jul 14, 2016 6:46 am

I am sorry you are going through this with the added issue of conflicting news from different doctors. I may have done things a little differently than most but I will share it. My GI doctor did two colonoscopies first before sending me on to a surgeon. The surgeon he recommended was a general surgeon. I asked around, including a friend who had surgery for colon cancer and this was the most highly recommended surgeon of all I asked. When we met I asked about how often this doctor performed colon resections and it was very frequent. I am sure that a colorectal specialist would be the ideal in most cases and probably yours as well but I have no regrets with selecting the surgeon I did.
Routine colonoscopy 4/19/16 tubulovilois adenoma partially removed piecemeal - high grade dysplasia
Follow-up colonoscop 5/11/16 partial removal of remnants - suspicion of intra mucosal carcinoma
Right Hemicolectomy 6/7/16 margins and 39 lymph nodes - negative


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