So Confused

Please feel free to read, share your thoughts, your stories and connect with others!
tarheelmom
Posts: 168
Joined: Mon Mar 07, 2016 5:55 pm

Re: So Confused

Postby tarheelmom » Thu Jul 14, 2016 9:40 am

I think it is very important to get rectal cancer staged BEFORE surgery. Neo-adjuvant chemo/radiation (pre-surgery) is often the treatment path for rectal cancer. After my CT scan, I had an endoscopic ultrasound (EUS) for preliminary staging. An EUS can provide an estimate of the depth of tumor invasion in the wall as well as a look at sphincter involvement and a rough idea of lymph nodes. My surgeon did not do the EUS, but he was in the room during the procedure so he could get a real time "look" at the situation and develop his plan of attack. My case was also reviewed by the tumor board who agreed with the surgeon's initial assessment and treatment recommendation. Good luck.
52 y at dx, mom to 4
DX: RC on 2/22/2016
Stage I, T2N0M0, 0/32 LN
23 mm x 7 mm moderately differentiated invasive adenocarcinoma
3 cm from anal verge
4/12/16: ULAR, TME, & temp ileostomy
6/14/16: ileo reversal

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

Re: So Confused

Postby Marylandmaniac » Thu Jul 14, 2016 1:18 pm

Thanks Tarheel. I have two appts set up with highly recommended colorectal surgeons. That way I can make sure I go with who I feel is best and not delay the process. I am getting an MRI Tuesday morning then meeting with one surgeon at MedStar Washignton then the following day meeting with a more local surgeon that friends in the medical field highly recommend. I assume the surgeon will be the one to order any further tests and I will see what they say about the sonogram. I did talk to my GI today and he is pretty upset at the surgeon. He feels very strongly that the tumor is contained and has not spread. Of course anything is possible but what upsets me is I feel this surgeon tried to scare the "crap" out of me because he just didn't want to deal with me. My husband said he felt the same way. Instead of just saying something like I feel this is more than I want to handle he instead painted every worse case scenario to get me running out of his office.

Thank you to everyone for the advice. I am going to go pick up the other supplements I am missing.
RP - Did you ever have issues of bloating while taking the modified citrus pectin? I feel like it does that to me and not sure of ways to minimize it. DId you do pills or powder? I have powder right 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

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

Re: So Confused

Postby prs » Thu Jul 14, 2016 2:01 pm

Marylandmaniac wrote:Thank you to everyone for the advice. I am going to go pick up the other supplements I am missing.
RP - Did you ever have issues of bloating while taking the modified citrus pectin? I feel like it does that to me and not sure of ways to minimize it. DId you do pills or powder? I have powder right now.

I hate to say this, but I find the posts of rp1954 to be almost incomprehensible. I'm sure he/she is trying to be helpful, but I don't know if any of the supplements/blood tests recommended are part of any recognized treatment plan, or if there is any proven evidence that they are helpful.

IMHO, given your state of confusion, it might be best to look elsewhere for advice until you have a better understanding of your condition.
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

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

Re: So Confused

Postby prs » Thu Jul 14, 2016 2:21 pm

tarheelmom wrote:I think it is very important to get rectal cancer staged BEFORE surgery. Neo-adjuvant chemo/radiation (pre-surgery) is often the treatment path for rectal cancer. After my CT scan, I had an endoscopic ultrasound (EUS) for preliminary staging. An EUS can provide an estimate of the depth of tumor invasion in the wall as well as a look at sphincter involvement and a rough idea of lymph nodes.


I too had a rectal ultrasound to determine staging.
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

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

Re: So Confused

Postby rp1954 » Thu Jul 14, 2016 5:04 pm

Marylandmaniac wrote: RP - Did you ever have issues of bloating while taking the modified citrus pectin? I feel like it does that to me and not sure of ways to minimize it. DId you do pills or powder? I have powder right now.

We consistently used the MCP powder, sometimes not at full dose, for some months at the start. Always getting MCP mixed and down was annoying.

My SO had had bloating before diagnosis, long before nearly complete obstruction. After dx, we also had a big dietary switch to a lower carb diet. This included less starchy veggies, and digestive supplements, like betaine hydrochloride, pancreatic enzymes and multicomponent digestive formulas, before surgery. No more bloating or diarrhea complaints.
----
Peter, everything comes from the global literature base and considers various practices. Once you read a few thousand papers and myriads of abstracts, you might realize how parochial and limited that ordinary clinical oncology can be. Like you, we utilized our own dr versions of Habr-Gama. More sources and better data drive better analyses and results. Everything we do has been run through one or more doctors. And then monitored in greater detail. I encourage anyone to find and compare, better doctors and literature sources, and share the results. We've rejected less detailed, less personalized approaches; they're simply unsurvivable in our situation.
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

mike1965
Posts: 118
Joined: Mon Jan 25, 2016 11:07 pm

Re: So Confused

Postby mike1965 » Thu Jul 14, 2016 9:59 pm

Marylandmaniac definitely get another doctor. I had similar experience. My first surgeon did a colonoscopy and cut out a polyp. It came back cancerous but he was convinced he got it all out and no need for surgery. He told me everything that could go wrong with the surgery. I was not comfortable with one opinion so I went to an oncologist and another surgeon and they both agreed I had to have surgery. When I went back to first surgeon he was so upset. Asking who told me to go for second opinion. He said he would not do the surgery. I went to second surgeon and had LARS surgery with great success. Good thing I did because there was cancer still in me and on the move. I want from Stage 1A to Stage 3A. The surgery saved my life without it the cancer would have moved to other organs. I am now doing chemo and praying that all the cancer is gone. I pray all goes well and happy you are getting a colo/rectal surgeon and seeing an oncologist. Be aggressive in your fight.
Colonoscopy 09/06/15 Doctor removed polyp
DX - Rectal cancer 09/10/2015 T1M0N0
Surgeon recommended wait and see approach 09/2015
Tumor board recommended LARs Surgery 10/2015
Oncologist and PCP recommended LARs Surgery 11/2015
Seeking 2nd opinion from another Surgeon 01/2016
Having Sigmoidscopy on 02/01/16.
Figured out treatment 02/2016
LARS Surgery 03/2016
Stage 3A T1 N1C M0
Chemo Folfox to begin 04/18/16

Nik Colon

Re: So Confused

Postby Nik Colon » Fri Jul 15, 2016 4:58 am

Marylandmaniac wrote: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.

Colon and rectal cancer are grouped together, treatments will vary slightly, mostly with rectal getting radiation vs colon not. Chemo is pretty much the same, different combos depending on stage, etc. Surgery usually affects people more with rectal and how much of the rectum is removed. I had only colon, so I don't know much about rectal, but many here do, so I'm sure they have better info.

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

Re: So Confused

Postby Marylandmaniac » Fri Jul 15, 2016 5:37 am

Peter and RP ,

I appreciate both responses. I try to gather as much information I can and then figure out what I agree with and what I don't. From what I have read I feel strongly that I want to use Cimetidine and Modified CItrus Pectin. My feeling is the research is pretty impressive and even if it doesn't work for me it isn't very expensive and my doctor doesn't have a problem with me taking it. As for all the other supplements out there, I think whatever I can do to boost my immune system is a good thing. I have been so stressed these past weeks that I have a hard time eating at times. So at least getting vitamins and minerals is a good thing.

The bloodwork I need to figure out. My problem is right now I don't understand what all these markers mean or how I would even use them to help myself. That makes my head spin but I will look into it. What would be nice is if when the results came back they actually show what looks off and what looks good.

I get my MRI on Tuesday and then 2 consults with colorectal surgeons on Tuesday and Wednesday. I am hoping that I have a better idea then of what we are going to do and what I am exactly dealing with. In the meantime I am just trying to do enjoyable activities with my husband and children and spending time with friends.
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 » Fri Jul 15, 2016 6:02 am

Marylandmaniac wrote:
The bloodwork I need to figure out. My problem is right now I don't understand what all these markers mean or how I would even use them to help myself. That makes my head spin but I will look into it. What would be nice is if when the results came back they actually show what looks off and what looks good.

.

the paperwork showing the numbers should show the normal range and which are above or below normal. Being somewhat off is not unusual on chemo, so expect that when/if you are. The docs are aware of numbers, some can be way off and ok, others just slightly off is bad. You can always ask or look into each specific one to see what they mean and how much off is ok, etc.


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: beach sunrise, Google [Bot], prs and 31 guests