New here, just diagnosed at age 38

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mhalpin12
Posts: 4
Joined: Thu May 08, 2014 11:16 pm

New here, just diagnosed at age 38

Postby mhalpin12 » Thu May 08, 2014 11:29 pm

Hello, this is my first time posting to the board. I just spent the past couple of hours reading through the board, learning a lot.

I'm 38 years old, with an uncle who died of colon cancer. No other family history. I went in for colonoscopy last Tuesday after bleeding/mucus with stools. I have had this symptom on and off for several months, but thought it was hemorrhoids. GI thought it might be colitis, but scope showed a tumour. I have very little information at this point, only what I remember him telling me through the haze of post-procedure Propofol and the shock of hearing the word cancer. He said he found only one tumour, in sigmoid colon. He said it appeared to be slow-growing, though I don't know how he could know that by looking? (any thoughts on this?) I remember him saying that it looked like it had been there 5 years or so, and that surgery would be needed. I was sent for a pelvic and abdominal CT scan immediately, and doctor said that it didn't appear to have spread anywhere, lymph nodes did not look enlarged. I have appointments with surgeon and oncologist next week.

That's all the information I have at this point. I know that biopsies were taken. Should I call and ask for the results from those, or should I wait to speak to surgeon and oncologist? I don't know what to expect next. This is such a shock for me. I have four children, ages 16-18 months. The thought of fighting cancer and possibly leaving my children motherless has shaken me to the core. If anyone has any information to offer me at this early stage, I would appreciate it.

I understand that staging is extremely important. When is that done? With the biopsy, or only after surgery is done and the tumour removed? Is there any way to tell the stage at this point? Also, is that CT scan completely reliable as far as telling if the cancer has spread? What other tests can/should be done? Thank you so much for any information you can give. I'm deeply grateful.

Michelle H.

livingbyfaith
Posts: 430
Joined: Wed Dec 31, 2008 5:06 pm

Re: New here, just diagnosed at age 38

Postby livingbyfaith » Fri May 09, 2014 12:28 am

Please take time to get your options. They rushed my husband into surgery when looking back he probably should hav had chemo first like they do in Florida. A friend recently was diagnosed and the oncologist wanted immediate surgery, he went to another oncologist and they said no, went to a cancer center and they said no. They also told my husband it was slow growing, so take your time. Pray for wisdom. I will be praying for you.
Hubby 72 cc
Resctn colon 07 stage 3/11 15 cm liver met CEA 3000+
CPT 11, 12 xelox kras wild gall blddr rem 7-12 & abltn
liver stents bi-mo gilbert lng mets , cpt-11 3-13, 2 hernia surgeries2013 & liver abltn went to heaven 10-24-13

daisydaisy
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Re: New here, just diagnosed at age 38

Postby daisydaisy » Fri May 09, 2014 12:50 am

Dear Michelle,

I am not the most experienced person here and also a caregiver. I can imagine how scared you are. I'd recommend to stay away from Google now, even though it's difficult.
Usually when a mass is found in a colon, it is biopsied, though the doc is usually able to tell whether it is cancer just by its appearance. But the biopsy results are important, because tumours have different features, and further treatment depends on them, as well as on the fact whether it has spread or not.
It's good that abdominal CT didn't show anything. They should also check your lungs. I guess they either did it or will do it soon. There is another test called PET that they may do, but not everyone has it. Or another one - MRI. But CT is usually enough for liver and lungs, especially when done with contrast.
They should also check your blood tumour markers, such as CEA and CA 19-9, maybe some other ones. For some people they remain within normal range even with the disease, others have them elevated and can track extent of their disease. It's important to know them before they cut the tumour out, this value will be your baseline.
Some time soon you should have a surgery. Sometimes the doc decides to do some chemo and radiation first, especially if the mass is in the rectal area. It's a very common approach. The surgery may be done as open or laparoscopically. I don't know much about ostomies, it's not done always or sometimes done temporarily. My mom's surgery was about 2-3 hours, open type. You will find lots of stories about surgery here.
After the surgery they will study your tumour and the adjacent lymph nodes. If none are affected, lungs and liver clear - it will be stage 2. If lymph nodes are involved - stage 3. If there is involvement of distant organs - stage 4.
Chemo is a must for stages 3 and 4. For stage 2 sometimes they do it, sometimes not. It depends on tumour features and some other factors.
Chemo affects different people in a different way. Usually it's a combination of several drugs. My mom takes only xeloda pills right now and she is more or less ok now. Some diarrhea, cracks in her feet, but all manageable. As far as I know, hair may fall out somewhat, but it's not very common as with chemo for breast cancer, for example.
Michelle, do you have someone you can take to doctors with you? Because in the beginning while you are so
stressed it's hard to remember things. I suggest to take copies of all test results and keep a file for your own records or for a second opinion, it's actually ok to consult other docs, especially if you are not happy with your current one.
Take it step by step. Breathe. You will read many stories here, people here are wonderful. I wish you good luck.

Stevet
Posts: 54
Joined: Thu Mar 06, 2014 9:35 pm

Re: New here, just diagnosed at age 38

Postby Stevet » Fri May 09, 2014 2:00 am

Michelle, I know how overwhelming this is. Especially with children! This kind of news is tough to hear at any age. The good thing is no lympnodes affected. Between the surgeon, and oncologist they'll put together a care plan.
What you should do is grab a notebook, and write down any questions you may have. You Should also bring someone with you to your surgeon and oncologist ( to write down notes/answers to your questions.
You can get thru this! I'm 38 as well, and was diagnosed at the age of 18. My CC was stage IIIC with lymphnodes involved. I've had NED for 20yrs.
If you have any questions you can PM me
Good luck,
Steve

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Voxx66
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Re: New here, just diagnosed at age 38

Postby Voxx66 » Fri May 09, 2014 2:34 am

First thing is remember to breathe. After the shock wears off you will find ways of dealing with this. My advice may be a bit different than what others will give you which is why you need to carefully consider your options.

First off - for a cancer like this - yes I think immediate surgery is going to be the standard and best treatment. I'd get it removed asap if that is your doctor's opinion but there is no harm in getting a second opinion so long as it happens fast.

Secondly - depending on how you handle things, I'd recommend reading and learning as much as you can about your condition. You can't ask the appropriate questions or make informed decisions if you are uninformed.

There is no way to definitively stage your tumor without removing it even though you might get enough info to make a guess. No swollen lymph nodes on the scans is a good sign but you won't know for sure if any are affected until after surgery and biopsy. The stage will determine treatment as well as the biopsy results. Most crc cancers are adenocarcinoma but not all. There are also some important genetic factors that should be tested though that isn't so important as of yet.

One other word of advice for now. search links on here for cimetidine if you are indeed having surgery before chemo. That is information I wish I had before my surgery.

Lot's of good and knowledgeable people on here to support you. You have definitely found the right place.
DX and resect 10/2012 age 46
Stage IIa CRC
liver mets both lobes 8/2013
CEA 28
FOLFOX + Avastin 8/26/13 3 rounds
Folfox only 3 rds + rd 8
platelets low round 7,9,10 5FU only
1/14 CEA 1.0 y90
5fu
10/14 mets lung and peri
1/15 Folfiri

tam-e
Posts: 6
Joined: Mon Sep 30, 2013 11:55 pm

Re: New here, just diagnosed at age 38

Postby tam-e » Fri May 09, 2014 2:45 am

:) Michelle:

I'm new here, too, but I feel like I was in a similar boat as you: went to doc due to blood in stool, assumed it was hemorrhoids, but convinced doc to give referral for colonoscopy, as I was quite paranoid--my grandfather had passed from colon cancer in his 70's. Sure enough, a thumb-sized tumor was found in my sigmoid colon. Yikes. I was convinced it was the end for me.

Staging is usually done after surgery, so that's when I found out I was stage IIIB (one lousy lymph node was positive). Now I've just finished six months of chemo. There is light at the end of the tunnel, even though it may seem bleak at times. And having some Alprazolam didn't hurt, either. :wink:

Two things I'd have done differently: 1) Get your CEA level checked before surgery. Mine wasn't, so I don't know if it's a good indicator for me. 2) Start chemo soon after surgery, if they let you. Mine was started within 8 weeks, but it seems that earlier has proven to be better now, as in 4-6 weeks.

One thing to note about stats: I drove myself crazy looking at survival stats until I realized how old they were. The American Cancer Society's stats are from those diagnosed between 1998 and 2000; oxaliplatin wasn't approved for use until 2004. Today's stats would be very different.

Best of luck to you. Let me know if you'd like to talk further.

Best,

Tam
8/13: dx CRC @36yo
Stage IIIB (t4 n1 m0)
9/13: Colon resection
10/13: 1 round FOLFOX
10/13-4/14: 8 rounds XELOX
(No oxi last two rounds due to neuropathy)
11/14: clean CT and bone scan
2/15: developed panic disorder
6/15: still NED! Neuropathy much improved. Panic meds working.

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O Stoma Mia
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Ѡ Ѡ - Preparation for surgery

Postby O Stoma Mia » Fri May 09, 2014 7:12 am

mhalpin12 wrote:Hello, this is my first time posting to the board ... I understand that staging is extremely important. When is that done? With the biopsy, or only after surgery is done and the tumour removed? Is there any way to tell the stage at this point? Also, is that CT scan completely reliable as far as telling if the cancer has spread? What other tests can/should be done? Thank you so much for any information you can give. I'm deeply grateful... Michelle H.

Hi Michelle - Welcome to the message board, and I'm sorry to see that you have such a reason to join.

First, let me say that it's very good that you found us so early and have joined so soon, because there are some things that can only be done at the early stages of diagnosis that you would otherwise miss if you waited until later on to join. I'll mention a few of these potentially missed opportunities here (other members have already mentioned some of them):

  • Get copies of all reports - Now that you are starting on your cancer journey, you should get in the habit of always asking for copies of any reports that can be obtained. At this point, you could ask for copies of the colonoscopy report (with photos, if they took any photos of the tumour), and of the pathology report of the tumor biopsy. Also, the pelvic/abdominal CT scan should come with a radiologist's report, and it may also be possible for you to obtain, at a small cost, a copy of the CD of the CT scan images. These are also useful later if you ever want to obtain a second opinion. Sometimes they might try to tell you that they don't have a report, or that the report is only stored on the computer, but they can usually generate a report if you insist. (I think that the insurance companies usually insist on having these reports). The reports are also useful on this message board, because some people here may ask you questions that can only be answered by reading the technical section of your report.
    .
  • Get tested for CEA tumor marker, and perhaps CA19-9 tumor marker, before beginning any surgery or treatment. This is needed for baseline purposes.
    .
  • Get tested for genetic mutations or other biological abnormalities that might influence treatment or staging. There is a range of new genetic tests that can be done to determine whether a patient will be a good candidate for this or that type of therapy. Some of these tests require tissue specimens captured in a certain way or preserved in a certain way. If these options are not discussed beforehand, then later on it may not be possible to get the desired test done because the opportunity to do so was missed. At this point you could ask the doctors when, if ever, they are planning to do any of these types of tests, and if so, which ones are they planning to do?
    .
  • Family history - Have a discussion early on about your family history of cancer and whether there is any concern there for hereditary factors playing a role. There are checklists and worksheets for determining whether there is a hereditary bias towards cancer, and then there are lab tests to confirm/disconfirm this.
    .
  • Examine new, alternative, or supplementary therapies early on, before they start you automatically on the 'accepted standard of care'. For example, the post by rp1954 in another thread, and the post by voxx66 in this thread, fall in this category -- There are some potentially very useful and not-too-expensive treatments like Cimetidine that could have a dramatic effect if taken before initial surgery, but which are not so useful if applied long after surgery has occurred. This also applies to type of surgery to remove the primary tumor. Many times there are several different approaches that could be taken, but the doctors don't always give you a choice -- they just do the one that they prefer or that they find most convenient. Therefore, as one poster has already said, it is important at this point to start learning some of the terminology so that you can understand and follow what the doctors are proposing to do. At some point you may have to take a more active role in everything and be your own advocate when it comes to planning the next step in the treatment plan.
    .
  • Type of surgery to be done - Before surgery, there should be discussion of what exactly they are planning to do and what the alternative options might be -- for example, open surgery vs laparoscopic surgery vs some other option.. One area involves the choice to perform, or not to perform, an ileostomy surgery to create a colon bypass with a stoma bag. If they are planning to do the ileostomy operation at the same time as the primary surgery, then you will want to have a prior discussion with the surgeon concerning the exact location where he/she proposes to put the ileostomy/stoma-bag connection. You don't want to wake up from surgery and find out that they put a stoma bag in a most inconvenient place on your belt-line, for example.
    .
  • Choice of surgeon - Ideally, for colorectal cancer you should have the surgery done by someone certified by the relevant board of colorectal surgeon examiners. Before surgery, you can inquire if the surgeon assigned for your surgery has the desired certification. This is particularly important in the case of rectal cancer, since surgery inside the narrow pelvic cavity is very difficult to do, and requires someone specifically trained in this area and with a lot of past experience.
    .
  • Pre-surgery preparation - There are certain things that can be done (diets, exercises, etc.) and that can make your body better withstand the effects of surgery. There are some threads on this board that cover things of that nature. There are also things that you can buy in advance and bring to the hospital that will make your stay there more comfortable. There are threads on this board for that, too.
    .
  • Off-chemo activities - There are some things that cannot easily be done while on chemo, so they need to be scheduled earlier on, before chemo starts. One of these is a Dental Checkup. Dental work is not advised, or it may even be prohibited while on chemo because chemo prevents oral surgeries from healing. So, for example, before chemo starts it is a good idea to have a dental check-up to see if you have any impending abscesses or tooth decays that need attention.
    .
  • Caregiver or other helpers - There are about half a dozen specific categories of assistance that a patient will require during the first year, and it would be a good idea to identify these areas and to plan on who is going to be able to help out in these areas. One area has already been mentioned by other posters, and that is to have someone in the 'information support' role who can go with you to appointments and remind you of which questions to ask, and to write down the answers that you were given, since you might not be in a position to handle all of this information so quickly. Also, for some appointments, you may need to arrange for a driver to drive you to and from the hospital, etc. When you are on chemo, someone else may have to do the grocery shopping, cooking, house-cleaning, etc.

You also asked about staging. Normally, staging is done in successive phases, which might be described as follows

  1. Pre-diagnosis - No staging is possible here, since no diagnosis information is available. Here, the patient has some symptoms that may be consistent with colon cancer, but none of the required tests have been done
    .
  2. Initial Diagnosis - The initial diagnosis is usually done by colonoscopy, with a tissue sample sent out for biopsy. At this stage, an experienced GI doctor may be able to visually identify a mass as a likely malignant tumor, and this initial guess would be confirmed by the pathology report on the biopsy. This, however, does not constitute a staging because it does not address all of the components of a staging code. A TNM staging code requires information from (1) the primary tumor, (2) the regional lymph nodes, and (3) any metastatic tumors located in remote organs. The colonoscopy can only give partial information on the first one -- the T component -- and even so, the information is incomplete, because the T component can only be definitively identified after surgery when the specimen is examined by the pathologist.
    .
  3. Initial Staging - Before surgery, it may be possible to come up with a tentative, initial staging covering all three components of the TNM staging code by doing some imaging (i.e., CT, MRI, X-ray, ultrasound, etc) of the thorax, abdomen, and pelvis to look for possible metastatic tumors in lymph nodes and organs such as the liver and lungs. This information, combined with the information obtained from the colonoscopy can give an initial, tentative staging, such as cT3N0M0. Here the c prefix means that this is obtained tentatively from clinical means, such as a CT scans, X-rays, colonoscopies, etc
    .
  4. Final Staging - The final staging usually has to wait until after surgery, because the pathologist needs to examine the excised specimen and the excised local lymph nodes in detail under a microscope before the final T and N components can be definitively determined. Thus, the final staging is usually available towards the end of the patient's 1-week stay in the hospital. It is at this point that the medical team (surgeon, gastroenterologist, oncologist) will meet to decide the final staging code. This is decided by combining the T and N components from the pathology report with the M component from the various scans and imaging procedures that were done. The final TNM staging code is very important, because it determines, for the most part, what the first-line therapy regimen will be. Final staging codes for colorectal cancer are explained here: Colorectal cancer TNM staging
    .
  5. Re-Staging - After various chemo or radiation therapies have been tried, there will be new scans and new tests to do what is called re-staging. For example, if a patient later comes up with a scan or a new biopsy showing a metastatic tumor that wasn't there before, then the patient is re-staged to a new designation which uses mCRC as a suffix. For example if a patient's Final Staging was something like T3N0M0 and then a liver metastasis later develops, then this is designated by something like "T3N0M0 with mCRC progression to the liver". A re-staging never changes the Final Staging code; it just adds another phrase to the original Final Staging code so as to specify what kind of progression has occurred. All of this is explained in detail in one of the posts at the top of the message board.
Last edited by O Stoma Mia on Tue Jul 29, 2014 7:20 am, edited 1 time in total.

LabLover
Posts: 65
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Re: New here, just diagnosed at age 38

Postby LabLover » Fri May 09, 2014 7:47 am

I was diagnosed with stage 3 rectal cancer last May at the age of 37 (with no family history). My kids were 8 and 10 at the time. I too was terrified of leaving my children motherless. However, once the shock wears off you do what you have to do to try to beat this terrible disease. Is the tumor in your colon or rectum. If it's recital cancer standard protocol is chemo radiation prior to surgery. If colon cancer, then surgery is first. A big part of treatment is your doctors and treatment center, so make sure you are comfortable with them.

JDinNC
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Re: New here, just diagnosed at age 38

Postby JDinNC » Fri May 09, 2014 8:45 am

So sorry to hear you have cancer. There seems to be more younger folks joining here which really troubles me. I'm just so glad you found us there are so many knowledgeable folks on this board with great advise.
I know the word cancer is in your head 24/7 right now but once you research and learn about your situation you'll find the courage to fight to win... Remember each person situation in your stage will be different so don't think "this is what's going to happen to me"... So stay strong.
I totally agree to bring someone with you that's not emotionally connected when you talk to your oncologist /surgeon. You won't hear a word he's saying to you so you'll need a backup. I even had my IPad with me and did FaceTime with my surgeon and my nurse friend so she could hear my updates. My doctor was impressed saying that it was the first time he had done that with a patient.

So right now, take vitamins, change your eating habits and learn all you can about colon cancer.

You'll do fine..we are all here to support you

Jan
61 y/o female @ DX...........
T3N0M1
6/13 DX- stage 4
Sigmoid colon cancer.
One met to lung
7/13 colon resection
8/13 lung resection
7/17 four years....NED
8/18 five years....NED
MELANOMA
63 y/o @ DX
6/15 stage 2a
7/15 surgery on arm
7/15 NED
4/16 recurrance
5/16 remove metastasis from back
5/16. Started immunotherapy
8/16 discontinue treatment
7/18...PET scan...NED

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kellywin
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Re: New here, just diagnosed at age 38

Postby kellywin » Fri May 09, 2014 11:11 am

Hi Michelle - so sorry you are here, but I (and everyone else here) completely understand where you are right now. There's a lot to absorb and it's scary as hell. Once you meet with your surgeon and oncologist and get a plan, it helps. So does Xanax, don't be afraid to ask. You have a lot of good advice here so I won't tack on much. Make sure you are happy and confident in your doctors, especially your surgeon, if you are not, there's nothing wrong with a second opinion. You will get through this.
Kelly, mom 13 yo girl
Dx 11/15/12 Rectal Cancer @ age 40
Stage IIIC
5.5 weeks Xeloda & Radiation - complete 2/5/13
Colectomy 3/12/13, 7 of 14 nodes positive - no ileo
4/24/13-8/20/13 - 5 rounds Xelox, 1 Xeloda only
7/2015 Clear colonoscopy!
4/2018 Clear CT!

drebay
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Re: New here, just diagnosed at age 38

Postby drebay » Fri May 09, 2014 12:20 pm

Yes, bring a friend if you can. You will not recall a lot of what was said, even if you write it down. My children are 11 and 14, so I know the feelings you are having. My oldest doesn't talk to me a lot about the cancer, but she talks to dad, so I leave that alone. She is at least talking to someone.
6/13 Age 45 mom of 11 and 13 yr old DX Stage IV liver mets
7/13 colon surgery
9/13 Folfox
11/13 Xeliri
3/14 more liver mets
4/14 Lung Met
4/14 Liver resect delayed;lung resect done
5/14 Surg not an option
9/14 Stivarga
3/15 Back to IV Chemo
6/15 Avastin
9/15 In Clinical Trial

mhalpin12
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Re: New here, just diagnosed at age 38

Postby mhalpin12 » Fri May 09, 2014 2:39 pm

I can't thank you enough for all the helpful and supportive replies! I am deeply grateful to those who took time to reply with such helpful information.

To answer the questions that were asked:

-Cancer is in sigmoid colon, not rectum.
-I was told surgery would be laproscopic with no ostomy. Just reconnecting the ends of colon back together.
-CT scan was done with contrast (two kinds...IV and oral), but I don't know if my lungs were included in the scan. Lab order said Pelvic and abdominal CT scan. Does that include lungs?
-I did receive copies of Colonoscopy report (with pictures) and the labs that were done (severe anemia, low ferritin). I did not get the CT scan report, but will do so. I'm in the habit of getting copies of all my medical records anyway, but will be extra diligent with all cancer reports.
-Husband will be accompanying me to all appointments to be an extra set of ears.
-I'm researching everything I can, and I have huge list of questions for both doctors.

Questions:
-I checked my labs and saw that a CEA was done. Result was 1.9, with positive being over 5. What exactly does this mean? Is this is a good indicator of anything?
-Lab work showed INR Value as low: .98 where low normal starts at 2.0 . What is this test and what does it mean? I've Googled it but can't understand it.


Thank you for the information about Cimetidine. I will be reading more and asking for this before surgery. Thank you also for information about other tests that should be considered before surgery. I'm making note of everything. And finally, thank you for information about staging, and especially about how old the survival rate statistics are. I had a breakdown last night while reading those online, so it's nice to know that they aren't the harbingers of doom that they seem. I guess I just have to wait until surgery is done, the tumour and lymph nodes are tested, and see where I am.

Chemo scares me to death. As I said, I have 4 children, and my youngest is 18 months old. One of my children is autistic, and my youngest is showing early signs of autism as well. I homeschool all of my children, and while we are on summer break now, school must start in the fall. The thought of being sick with chemo or dying of cancer, all while trying to take care of my family and homeschool and be the wife, mother, and homemaker that I am....it's overwhelming.

I've dealt with chronic health issues in the past few years, and I don't like or trust most medical professionals; they have been very little help. I see a doctor of Chinese Medicine and Acupunture regularly and have felt quite well for the past year and a half. It's hard to believe there has been colon cancer present all that time. Is there a place on this board or those who wish to pursue alternative therapies? Some of the alt. therapies I've read about do not seem sound, but there are others that do. Any information welcome.

Someone mentioned changing diet and exercise in order to help me through surgery and fight the cancer. I would like more specific information about where to go on this topic. My diet is fair, exercise poor (proper exercise anyway...I'm on my feet and active all day long...4 kids and a house to keep up :). We don't eat junk, I cook all meals from scratch, not much sugar, plenty of fruits and veggies. I'm gluten free because of Dermatitis Herpetiformis diagnosis. Where should I go from here? The hard core Natural Cure for Cancer websites say all vegan, raw foods diet. That is simply not an option for me. But I'm open to other types of emphases diet-wise, and very open to supplements that could be beneficial. That has always been my starting point when dealing with health issues, not Western Medicine. Any information would be welcome.

Thank you again, everyone, for the help and kind words. May God reward you for your generosity.

Michelle

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O Stoma Mia
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Re: New here, just diagnosed at age 38

Postby O Stoma Mia » Fri May 09, 2014 8:05 pm

mhalpin12 wrote:Questions:
-I checked my labs and saw that a CEA was done. Result was 1.9, with positive being over 5. What exactly does this mean? Is this is a good indicator of anything?

-Lab work showed INR Value as low: .98 where low normal starts at 2.0 . What is this test and what does it mean? I've Googled it but can't understand it.

-Is there a place on this board or those who wish to pursue alternative therapies? Some of the alt. therapies I've read about do not seem sound, but there are others that do. Any information welcome.

-Someone mentioned changing diet and exercise in order to help me through surgery and fight the cancer. I would like more specific information about where to go on this topic.


Dear Michelle - Here are my responses to your questions. Please note that I am just a layman giving my own impressions. Others may disagree or have different opinions.

  • -I checked my labs and saw that a CEA was done. Result was 1.9, with positive being over 5. What exactly does this mean? Is this is a good indicator of anything?

    CEA is a tumor marker blood test that, for some people, is a good indicator of metastatic cancer progression. Thus, it is often useful for gauging prognosis for established metastatic disease. It is not useful at all for determining initial diagnosis of a malignant primary tumor in the colon, because its predictive value in the case of primary colon tumors is very, very low. This is generally because primary tumors and metastatic tumors behave differently: metastatic tumors (e.g., ones in the lungs, liver, peritoneum, etc.) can spew out CEA at a high rate because of their cell structure, while primary tumors in the colon rarely send out any CEA at all. Thus, CEA has what you might call "negative predictive power" -- if it is low at baseline, it doesn't tell you much of anything, but if it is very, very high at baseline, it suggests that there are already some active metastatic tumors somewhere in the body. This suggests that if a patient has a very high CEA at baseline, then the doctors should be looking very closely at all of the scans to see where these remote tumors might possibly be located. This also means that if the CEA is really high at baseline, they might choose a different first-line chemotherapy -- one that is especially good at treating many small micro-tumors that are actually there but are not visible by ordinary scanning technology.
    .
  • -Lab work showed INR Value as low: .98 where low normal starts at 2.0 . What is this test and what does it mean? I've Googled it but can't understand it.

    This is a blood clotting test that is described here: INR International Normalized Ratio. The significance for you would probably be within the context of your upcoming surgery. During surgery, there is a concern that the patient might develop blood clots that travel to the heart or lungs (pulmonary embolism), so they will be giving medication at the time of surgery to be sure that your blood clotting tendency is in the correct range. I don't think there is much to worry about here, because the doctors know all about this issue and they will be controlling it with the correct level of the appropriate medications. The only thing you need to worry about in this area is to correctly inform the doctor of all medications and supplements that you are taking at the time of surgery, including ones that you have been taking up to 48 hours prior to surgery. For example, they will be particularly interested in things like aspirin and other drugs/supplements that are known to affect the blood clotting capacity. So, before surgery you need to make a complete inventory of all of the things that you have been recently taking so that the doctors can take all of this into account when they are preparing you for surgery.
    .
  • -Is there a place on this board for those who wish to pursue alternative therapies? Some of the alt. therapies I've read about do not seem sound, but there are others that do. Any information welcome.

    The topic of alternative therapies comes up from time to time on this board, but opinions differ widely and I find it difficult to determine any consensus. A number of threads on this topic exist on this board, but they all seem to have the same wide range of opinions and advice. What I would be inclined to do would be to start by reviewing some of the government-based websites that have web pages on these topics. Presumably these web sites have been set up and reviewed by knowledgeable and responsible parties. Here are a few:

    Are You Considering Complementary Medicine?

    The National Center for Complementary and Alternative Medicine (NCCAM)

    Complementary and Alternative Medicine (CAM) on PubMed

    Office of Dietary Supplements
    .
  • -Someone mentioned changing diet and exercise in order to help me through surgery and fight the cancer. I would like more specific information about where to go on this topic.

    There are two books that go into topics such as these. The general consensus here is that fighting cancer involves three core areas: (1) an effective dietary or nutrition program, (2) an effective physical exercise program, and (3) an effective stress-reduction program.

    Anti-Cancer - A New Way of Life -by- Dr. David Servan-Schreiber (2009).

    Life Over Cancer -by- Dr. Keith I. Block (2009)

User avatar
kirac
Posts: 252
Joined: Sun Jun 09, 2013 10:34 pm

Re: New here, just diagnosed at age 38

Postby kirac » Fri May 09, 2014 10:25 pm

Hi - Sorry you are here.

Since others covered the medical stuff better than I could have, let me recommend mealtrain.com. I'm sure that you will have lots of people who will want to help so you can just post things that you need help with, and then people can sign up for them. If you pay $10, then you can post anything: meals, driving, babysitting, cutting the lawn, whatever. It helped me during my husband's treatment.
Husband (Age 36) 1/13 Dx Stage 3B rectal cancer
3/13 Chemoradiation
6/13 Tumor removed, Temp ileo, 1/15 nodes
7/13 Chemo = Oxaliplatin, Xeloda
1/14 Reversal
7/14 NED, CEA 1.8
12/14 CLEAR CT scan! NED

http://kickingasscancer.com/

User avatar
horizon
Posts: 1473
Joined: Tue Apr 12, 2011 10:10 pm

Re: New here, just diagnosed at age 38

Postby horizon » Sat May 10, 2014 7:40 am

I read your background and your diagnosis is almost like a mirror image of mine. Well, except I'm a dude. I remember how awful the period you're in is.

mhalpin12 wrote:Thank you for the information about Cimetidine. I will be reading more and asking for this before surgery. Thank you also for information about other tests that should be considered before surgery. I'm making note of everything. And finally, thank you for information about staging, and especially about how old the survival rate statistics are. I had a breakdown last night while reading those online, so it's nice to know that they aren't the harbingers of doom that they seem. I guess I just have to wait until surgery is done, the tumour and lymph nodes are tested, and see where I am.


STOP doing that immediately. Those statistics might not be recent AND they most likely are for all CC patients. If I remember correctly (don't quote me on this) they normally don't start screening for CC until age 50 and the average age of people who get it is in their 70's. You are obviously different as a younger patient. I did the same thing and upset myself for no reason.

Chemo scares me to death. As I said, I have 4 children, and my youngest is 18 months old. One of my children is autistic, and my youngest is showing early signs of autism as well. I homeschool all of my children, and while we are on summer break now, school must start in the fall. The thought of being sick with chemo or dying of cancer, all while trying to take care of my family and homeschool and be the wife, mother, and homemaker that I am....it's overwhelming.


It scared me to death too. I ended up working through it, as well as hitting the gym during the majority of it.
Here's a thread I started at the beginning of it: viewtopic.php?f=1&t=24762

I've dealt with chronic health issues in the past few years, and I don't like or trust most medical professionals; they have been very little help. I see a doctor of Chinese Medicine and Acupunture regularly and have felt quite well for the past year and a half. It's hard to believe there has been colon cancer present all that time. Is there a place on this board or those who wish to pursue alternative therapies? Some of the alt. therapies I've read about do not seem sound, but there are others that do. Any information welcome.


Can't help you there. Everything I did was standard care.

Someone mentioned changing diet and exercise in order to help me through surgery and fight the cancer. I would like more specific information about where to go on this topic.


Here's an example:

Exercise is key to better health in cancer survivors
http://www.cbsnews.com/news/exercise-is ... survivors/
I'm just a dude who still can't believe he had a resection and went through chemo (currently 7 years NED). Is this real life?


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