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Appreciate any help

Dxed
Posts: 79
Joined: Dec 2012

Hi all

I’ve been lurking for the past few days while awaiting diagnosis. CT Abdomen Pelvis (with contrast) and colonoscopy showed a 7cm malignant looking rectosigmoid lesion along with 6mm sigmoid polyp and a tiny 3-4 mm rectal polyp (likely Hyperplastic—hot biopsied). The initial (most certain) diagnosis is Sigmoid c. The final official diagnosis awaits results of Histopathology. With all the available tests, as of now the possibility T3n2 is very high. Histopathology report will shed better light.
I will be going soon for chest ct.

Being new to this kind of disease, I have no ideas of the terms, possibilities, choices, etc. I just familiarized myself with few things though this wonderful forum. I read most of the posts, and thought I should ask for help. My dr. said something certain: surgery to remove the infected 7cm area, reroute the BM (I do not know how) until it is possible to reconnect again (also do not know how). I also talked someone else who said I will be getting chemo (whether before or after the surgery—he is no expert). And as of now it seems no metastases, but nothing certain yet.
My concern now is to have a normal BM, because a narrowing in the area makes it uncomfortable and that is why I went to the doctor in the first place. I do not want chemo: will surgery do without chemo? Not after and not before! Any one had a similar case? And what were the options and final choice.

Thank you for being there

Lovekitties's picture
Lovekitties
Posts: 2993
Joined: Jan 2010

The system has been very slow. As a result lost a long post answer to you. Will try again later. You are not being ignored.

Annabelle41415's picture
Annabelle41415
Posts: 4399
Joined: Feb 2009

Sorry you had to join this group because of suspicions of this disease. First you should wait for the pathology reports to come back, get your chest ct and see what those show. If they want to reroute your rectum that usually means a permanent or temporary ostomy (colostomy or ileostomy). Doctors do things differently but mine did radiation/chemo at first to shrink the tumor (rectal), then surgery (they removed my rectum, made a j-pouch and gave me a temporary ileostomy), six weeks later started treatment. After treatment was all done then my surgeon did a reversal on my ileostomy. You will be in a whirlwind of events, thoughts, appointments, emotions, tests etc. You have found a wonderful site with a lot of knowledgeable caring people. Please come here for any questions and also if you just need some emotional support. Let us know how pathology and ct comes out.

Kim

steved
Posts: 836
Joined: Apr 2004

You are still in a stage of huge uncertainty and that is massively difficult. Till the histology is back you don't even know for sure you have cancer. If it is then you need to start talking options which will depend on site and spread as well as your other health issues. Chemo, radio and surgery may all feature but till you have certainty about the basics ty not to get too far ahead of yourself( talking if it being n2 is premature unless you have clear evidence of nodal spread). You doing the right thing in getting your knowledge together but there is a risk of you thoughts running away with themselves along paths that may not prove to come true.

Take a step back and digest the stuff you know for sure and what that means and try to not get too carried away with the maybes just yet. It's a long journey and you have time. Take it from one who has been at this for eight years.

Steve

thxmiker's picture
thxmiker
Posts: 1275
Joined: Oct 2010

To Chemo or not to Chemo is a decision your doctor will tell you about. Then you decide if you want to continue with his/her opinion.

Once you have a Colon surgery your BM will change a little bit forever. It will get more normal over time, but never quite the same. The colon removes water from the stool. Remove any piece and you are removing how well your body removes water from your stool.

How far a long is the cancer, what type etc... will be how decisions will be made. If the Docs are thinking about surgery, they already know what type of cancer you have.

Best Always, mike

Dxed
Posts: 79
Joined: Dec 2012

I talked to my dr. in his evening clinic before I went to take my chest CT. He called the head of the CT unit and asked that the report be sent in as soon as possible. I do not know how long it takes, but a 24 hours (all things considered) is normal. The images were instantly ready and I took a copy. I think I will be able to have an official diagnosis in a couple of days.
Lovekitties, thank you for your concern and effort. I’m sorry I missed your longer post.

Kim, thank you for your response. I appreciate your introducing and explaining the terms. I will be searching those to better enhance my education. And it goes without saying I surely found a wonderful site with a lot of knowledge and most certainly caring people.

Steve, it is sobering to read your cautions, I’ll take the advice seriously (difficult to do, though) Thank you. Even my confidence in my dr is wavering, I do not know if he is trying to hedge my questions now till certainty reigns or trying to boost my optimism for the time being, till I sober up. He is rather a bit optimistic (I’m not).

Mike, thank you for your informative input; now I know the relevant functions of the colon. As for surgery in my case they probably know (having experience and knowledge). Now that I have read your posts and the cautions Steve emphasized, I think I might have missed something in the language of the dr. The idea came up in relation to my many general, hypothetical and unorganized questions. Things will soon appear under better light. Thanks.

Lovekitties's picture
Lovekitties
Posts: 2993
Joined: Jan 2010

Sorry for the delayed response.

You have already gotten some good information from others here, but will add my 2 cents as well.

Since you already know there are polyps or larger obstruction in your colon, surgery will be a necessity regardless of their cancer/benign status. You don't want to become totally blocked. Until then, check with your doc and see if you can take a stool softener to help with the BM's. Some times the docs will recommend higher dosage than the label, but don't make that determination on your own.

Life with a temp or perm ostomy, while different, is certainly doable. I have had mine for 2 1/2 years and life is pretty much the same. If/when that becomes a need for you, ask all the questions you may have here as there are a number of us who can help from our own wxperiences with either temp or perm situation.

To do or not to do chemo is influenced by so many things...current health, age, life situations, potential benifits over not doing it, etc. etc. Know as much as you can before you make that decision. The most important thing is that once made, you should never look back and say...I should have done it differently. You must be 100% certain that you are making the right choice.

Hang out here with us and we will try to help you as best we can based on our experiences.

Marie who loves kitties

Dxed
Posts: 79
Joined: Dec 2012

(it takes for ever to post; hope this will make it)

Thanks Marie for taking the time to write. You are right about surgery; my dr called this evening (my time) and told me the same thing. He confirmed his cancer diagnosis on the basis of the histopathological results, and said the report will be ready tomorrow. I did not ask about staging, hoping for the best. The CT scan results showed no mets, he said. I will pick up my final report tomorrow, all results included. I will take those to another place to talk about choices. I will report as soon as I meet with them and have what they will say. At that point, I probably will need lots of your advice and suggestions before I take my decision.

Over the past 12 hours I have been navigating the net reading on temp/perm-ostomy (thanks to Kim who introduced me to the terms). Now I know what Ileostomy is. The reading made me realize the importance of what Steve posted.

(I wish I have the calm attitude you all have; I still cannot take it if I am not doing something. The net is a blessing keeping me busy)

Thank you all

Lovekitties's picture
Lovekitties
Posts: 2993
Joined: Jan 2010

Since it looks like an ostomy may be in your future I recommend the following book:

The Ostomy Book: Living Comfortably with Colostomies, Ileostomies, and Urostomies

Barbara Dorr Mullen and Kerry Anne McGinn RN BSN OCN

It was recommended by my ostomy nurse. It is an excellent source for the person just starting out. It was written by a mother who has an ostomy and her daughter who is an ostomy nurse. You may find it at your library, but definately on Amazon or perhaps at the local book store.

Also it would help us help you if you would fill in some info on your "My CSN Space" for anything you feel comfortable sharing.

Be careful with the info on the net. The info about ostomies is prob pretty ok, but on any medical papers, stats, etc. pay particular attention to the date(s). Even things only a couple of years old can be out of date as far as details go.

Wishing you well,

Marie who loves kitties

PS...can we have a first name or initials or something besides "Dxed" to call you? lol

thxmiker's picture
thxmiker
Posts: 1275
Joined: Oct 2010

We were all afraid in the beginning. Every new DX sends another scare. This is normal for everyone. This site helps with others advising about their experience. The more we know the less we are afraid of the unknown.

Sending thoughts and Prayers.

Best Always, mike

Dxed
Posts: 79
Joined: Dec 2012

Hi again
Sorry I have not been able to post sooner; the forum and website did not seem to respond for the past 40 or so hours.
Thanks, Marie, for the suggested readings, I will be getting the book soon. As I settle a bit, I will add to my page the relevant info.
Mike, appreciate your comforting comments.
Two days ago I got the histological report of my 4 specimens. I would appreciate your comments. Still my doctor’s staging is T3n2. The report reads as follows:
1. Colon biopsies (proximal sigmoid polyp): Tubular adenoma with focal high grade dysplasia.
2. Colon mass biopsies (rectal sigmoid ulcer): Invasive adenocarcinoma
3. Colon biopsies (rectal):
a. focal active colitis, mild, with focal cryptitis and occasional superficial granulation tissue formation; consistent with erosion
b. No granuloma or significant crypt architecture distortion noted.
c. No evidence of malignancy.
d. Clinicopapathological correlation is advised

4. Colon polyp biopsies (rectal polyp): Cauterized colonic tissue, with features consistent with hyperplastic polyp. No evidence of malignancy.

Today I went to the other experts to whom my dr sent me. They read his report, ordered blood tests which I did, and set me up for another Colonoscopy on Monday.
Why would they do that, and how bad my results look? Thanks

Sander

Dxed
Posts: 79
Joined: Dec 2012

Hi once more
Next Monday, early in the morning, I will be having another colonoscopy and should come ready to be hospitalized. Yesterday, as I noted in my earlier post, I gave blood for further tests. So let me recap and organize the relevant findings. (I am 61 year old male, soon in mid january will turn 62; healthwise, I am ok—no serious illnesses now nor in the past.)

So far, I have abdomen + Pelvis and Chest CT scans (all with contrast), and a colonoscopy. The colonoscopy showed a 7cm (18-25cm from anal verge) malignant looking rectosigmoid lesion. The earlier abdomen and Pelvis CT scan (with contrast) noted this part as “concentration area of Mucosal thickening at rectosigmoid junction of 6.85 length and 15-16cm from anal verge. Prominent vasa varosum and misty mesentry seen adjacent to it. At least two to three small enhancing areas are seen adjacent to this area. One of them measures 0.7cm. Can represent lymph nodes.” Pancreas, liver, kidneys , and spleen are normal. The Chest CT scan (with contrast) “Impression”: No evidence of intrathoracic metastatic disease”. The biopsies of this area were 12 tan tissue fragments averaging 0.4x0.2x0.2 cm. Their histological report reads “Colon mass biopsies (rectal sigmoid ulcer): Invasive adenocarcinoma”.

The colonoscopy showed also a 6mm proximal sigmoid polyp and a tiny 3-4mm rectal polyp. The results of all four specimens are below:

1. Colon biopsies (proximal sigmoid polyp): Tubular adenoma with focal high grade dysplasia.

2. Colon mass biopsies (rectal sigmoid ulcer): Invasive adenocarcinoma
3. Colon biopsies (rectal):
a. focal active colitis, mild, with focal cryptitis and occasional superficial granulation tissue formation; consistent with erosion
b. No granuloma or significant crypt architecture distortion noted.
c. No evidence of malignancy.
d. Clinicopathological correlation is advised

4. Colon polyp biopsies (rectal polyp): Cauterized colonic tissue, with features consistent with hyperplastic polyp. No evidence of malignancy.

This is the best I could put together. Earlier results of blood and stool tests showed nothing serious. For the time being, I'm concerned about the reasons for a second colonoscopy (though this is a university hospital whereas the other is not). I am also concerned about how soon can I be on medication, and about the possible reason for hospitalization on Monday. Can you please throw in any suggestions, rationalization, or a comment on how things so far look.

Thanks
Sander

tachilders's picture
tachilders
Posts: 315
Joined: Jun 2012

Maybe you should inquire about a PET scan as well, as I believe they are better at detecting small tumors that could be missed with a CT scan. I would want to be 100% certain of no metastasis before I made my decision about chemo. I think there are some folks on here who were told they had no metastasis, but then had a recurrence of colon cancer in a lymph node or organ, which ;eads me to believe it was there all along. These recommendations are just my opinion. I am a stage 4 with mets to liver, lung, peritoneum, and LN, so chemo was my only option (other than alternative medicine), as surgery wasn't possible even on my primary sigmoid tumor. I was dxed in JUne 2012, and have a loop colostomy.

Tedd

Lovekitties's picture
Lovekitties
Posts: 2993
Joined: Jan 2010

I too wonder why the need for a second colonoscopy unless the new docs are questioning the info from the first based on the scans.

I expect that the reason for the "be prepared" statement is that if there is a significant blockage of the sigmoid or rectum they will want to take care of it soonest.

I am a bit surprised that they are giving you "orders" without giving you reasons or explanations. I suggest that in the future when this happens you stop them right there and ask why or for what reason.

You are about the age I was when diagnosed. I was brought up that the doctors know best and you do what they tell you. Beleive me, a diagnosis of cancer quickly got me over that! I found that informatinn is golden, and that you should never just "accept" what you are told, but to ask for more information until you are comfortable that you know enough to determine how to proceed based on your personal health, life situation, etc.

Wishing you well. Please keep in touch.

Marie who loves kitties

Dxed
Posts: 79
Joined: Dec 2012

Hi Marie
The idea of "soonest" came up also after my first colonoscopy. My first dr. said I got to attend to the problem very soon to the point I thought I should run to the surgery room. I am not sure, however, it is that. I am actually comfortable with my BM though it is not that normal. But there is no pressing urgency.Questioning the diagnosis is more likely. My hunch is that, depending on the blood test and colonoscopy, they will be offering to operate during my stay. If that is the case, what your suggestions will be.

As for "giving orders," it is rather common in this part of the world, especially as treatment is "free."

I sure would appreciate your take on "surgery" if it is offered in this visit.

thank you again

Chelsea71
Posts: 1170
Joined: Sep 2012

Just wondering where you are from?

Chelsea

Dxed
Posts: 79
Joined: Dec 2012

Chelsea, I am from Arabia, right in the middle of the desert (that is why am a Sander).

Lovekitties's picture
Lovekitties
Posts: 2993
Joined: Jan 2010

I see from later in this thread that you are from Arabia. I have no knowledge of the customs or policies there, but still feel that as the patient you have the right to all the information regarding your medical care. One should never be subjected to medical procedures or medications without full knowledge...after all it is your body and life.

As to surgery, from the results you have given us there appears to be something there which doesn't belong. I personally prefer surgery over chemo and/or radiation for the removal of such things, however others have chosen differently to try to avoid an ostomy (either temp or perm).

An ostomy unto itself is not debilitating. Yes it does take some getting used to and finding the right ostomy products but that is all fairly easy to do. If the surgery involved the vertical incision from belly button to pelvic bone, then you will need to be careful for some time after about lifting things, as they cut the abdominal muscles. Over doing it can cause a hernia, which you don't want.

My doctor offered me two choices. Choice 1 was to have initial surgery for a "temp" ostomy, wait 6 weeks then start months chemo and weeks of radiation to hopefully shrink the tumor, wait 6 more weeks and have second surgery to remove any remaining tumor, then "possibly" have the ostomy reversed. The hope of all this treatment being leaving more of my body intact. Choice 2 was to have one surgery to remove the tumor along with other organs in close proximity and have a perm colostomy.

I chose option 2 because there was no guarantee that I would not end up with a perm ostomy from choice 1. While I was in excellent health otherwise, I felt that all the chemo, radiation and multiple surgeries from choice 1 could impact my overall health. I also felt that getting the tumor out soonest offered me the best chance of not having it spread.

Each person if differnt as is their cancer situation. What I felt was best for me, may not be the choice of others. Each of us must assess the information we have and weigh it with other aspects of our life. The important thing is once a decision is made, do not ever look back and wonder what would have happend if you had chosen differently.

Sorry this is so long, but hope that in some way it helps you.

Best wishes for Monday.

Marie who loves kitties

Dxed
Posts: 79
Joined: Dec 2012

Thank you Marie

Your thorough input is informative; I cannot thank you enough for sharing your thoughts and experience. It is very helpful. I have been putting together many questions for Monday's appointment, the most important of which is the plan of attack that drs may have in mind, and their suggestion on perm/temp-ostomy. The choice will ultimately be mine. Once I make up my mind, I am promising myself never to look back (wonder if I can help it; but I will try to train myself). The impact of chemo on the body is something I have to give serious thought, and so too radiation.

thank you for your time and effort

Sander

Chelsea71
Posts: 1170
Joined: Sep 2012

Hi Sander. Welcome to the group. I have no extensive knowledge regarding cancer or cancer treatment. I only know the basics. My husband was diagnosed a year and a half ago. (stage 4). It has been difficult but we have adjusted to this new way of living. I realize that you're trying to absorb and come to terms with your diagnosis. It' a process that will take time. As I mentioned I am no health care expert but your situation looks very promising to me. I think there is a very good chance that you caught it in time. It is unfortunate that you have to go through all this, especially during the holidays. My husband, Steve, has a permanent ileostomy which he adjusted to quite well. He has had numerous surgeries and is back on chemo again. He finds that his positive attitude has made all the difference. You're not there yet. You are still getting info about your situation. I think you have reason to be very hopeful. It's great that it appears to not have metastasized beyond the colon. Good luck on Monday.

Chelsea

PS - there is a lot of frightening information on the Internet. Take it with a grain of salt. I often search the Internet for info that will comfort me (or calm me down), I rarely find it.

Dxed
Posts: 79
Joined: Dec 2012

Your comments are spirit lifting. I do not know if I caught the beast in good time. Now with the benefit of a hind sight, it seems to have been around for quite a while. The dramatic change in BM was less than 12 weeks and has remained consistent till now. I read somewhere that the progress of this disease is usually a bit slow (though I do not know for sure). thank you again, and wish you and your husband a better life.

Sander

tanstaafl's picture
tanstaafl
Posts: 1014
Joined: Oct 2010

Our approach (click the picture or "tanstaafl") has been radically different, eclectic based on global literature and practices:

Serum biomarkers pre-op, post op, CEA, CA19-9, CA72-4, continuing highish markers. For us this turned out to be CEA every 10 (rapid treatment evolution)-35 days; CA19-9 typically at 3-7 weeks.

Neoadjuvant treatment (before surgery) based on Life Extension Foundation's recommendations for cancer with some additions.

Cimetidine especially before and after surgery, at least 7-30 days total, as one of the most crucial steps to enhanced overall survival curves. Solid tissue biomarkers like CSLEX1, CA19-9, COX2, live tissue chemosensitivity tests like the Larry Weisenthal Group or Rational Therapeutics.

Post surgery, we added daily low dose oral chemo similar to 1 year treatments for stage II, III CRC in Japan, except that with special "extras" it has worked well for us in a stage IV "chemo forever" situation. While many people would still puke their guts out under FOLFIRI, my wife physically could be at nice restuarants every night with the saved cost. While many curse FOLFOX's neuropathy, my wife plays the piano after 30+ months of daily chemo. But caveat lector, some nay think us crazed idiots worshipping at a fount of quackery.

Dxed
Posts: 79
Joined: Dec 2012

Thanks Tedd for suggesting the PET scan. I sure will bring it up on Monday. It is true without full investigation metastasis cannot be ruled out.

Thank you tachilders for sharing your “radical” approach; it sure looks global enough. Unfortunately, my knowledge is very limited. I should explore and familiarize myself with these areas after surgery (if it is too soon).

Thanks to all

tanstaafl's picture
tanstaafl
Posts: 1014
Joined: Oct 2010

The perioperative cimetidine (Tagamet) is probably best done before and in conjunction with surgery and represents a special opportunity to substantially help reduce the chance of recurrence. Even "above average" oncologists (Head of..., at NCI rated center) often did not know *anything* about it 3 years ago, and still appear hit and miss. Cimetidine for advanced CRC is coming to surface because of informed patient inquiries or insistence.

Figure 3D, CA 19-9 Level 2 or 3, shows the effect of overexpressed CA19-9 vs cimetidine on stage II and III patients. About 2/3rds of stage III CRC patients, and 3/4 of stage IV CRC patients have overexpressed CA19-9 in their tumor tissue stains.

Also, cimetidine was used as the standard in surgery for control of gastric acid to prevent acid aspiration until displaced by more powerful proton pump inhibitors like ranitidine (Zantac). In the first surgery, the surgeon forgot the cimetidine. However my wife took 1600 mg cimetidine for 4 weeks pre-op and daily ever after, especially when her pathology report showed extensive cancer necrosis (wipeout) in some areas due to massive granulocyte attack, a characteristic of cimetidine treatment.

In the second surgery, cimetidine almost slipped by again for lack of IV/injectable cimetidine. When reminded, the second surgeons decided to go with high dose oral cimetidine.

Several forums' more highly informed members have later directly expressed regret that they were not offered cimetidine for cancer surgery.

Dxed
Posts: 79
Joined: Dec 2012

Thanks for the reference. I have not yet started any medication. the whole thing started 10 days ago, and my initial doctor referred me to this Univ. hospital group. I will be asking about their intention and whether cimetidine is part of their thinking. I sure will be going back to the reference you provided. Thank you again and again

Sander

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