Worried wife trying to get information

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Piper7486
Posts: 3
Joined: Mon Feb 12, 2018 12:01 pm

Worried wife trying to get information

Postby Piper7486 » Tue Feb 13, 2018 8:11 am

Good Morning All,
Three weeks ago my 43 year old husband (no family history) went to get an MRI to investigate pains in lower left side he was admitted to the hospital and had a mass removed along with a foot and a half of colon removed two weeks ago we received the news that it was an adenocarcinoma which was sent to another lab to have more tests done due to the fact that they were in able to determine if it was stage two or stage four (all lymph nodes were clear) we have an appointment with an oncologist in two weeks. With my limited knowledge I have received from two weeks of googling (that I have since stopped do to the fact that all it was doing was messing with my head) I am assuming he either has very bad stage two or good stage four if there is such a thing. We are also waiting for results of a upper chest CT scan as well.
I guess my questions to you all is information you wish you had asked the oncologist, treatments and yes the side effects (I know everyone is different but I like being prepared) also how I can support him though all of this. Any information would be good I know the waiting around is probably the worst part.
Thank you all in advance

Lee
Posts: 5695
Joined: Sun Apr 16, 2006 4:09 pm

Re: Worried wife trying to get information

Postby Lee » Tue Feb 13, 2018 10:06 pm

First AVOID Dr. Google! A lot of information out there is out of date or flat out wrong. Hang around here if you want to research. You will find a lot of information and support here. Believe me we have all walked in yours and your husband's shoes. Know you are NOT alone here!

First you need to determine if he is a stage II or stage IV. It can have an impact on treatment plans. Why do you think it is a stage IV?

You need to know, many people are living or beating a stage IV colon cancer diagnose. It is not the death sentence it once used to be. Know in your heart your husband will beat this.

If he is indeed a stage IV, getting 2nd and 3rd opinions at a cancer treatment center or major cancer hospital is ALWAYS a good idea. Where are you?

Post all your questions and concerns here.

All the best.

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

NHMike
Posts: 1735
Joined: Fri Jul 21, 2017 3:43 am

Re: Worried wife trying to get information

Postby NHMike » Wed Feb 14, 2018 10:01 am

Stage 4 would be spread to another part of the body and I didn't see anything in your post about this. Did they do scans to determine spread? Or maybe the MRI covered the liver and lungs (usual areas of spread)? If there is no spread, then it shouldn't be Stage 4.

https://www.cancer.org/cancer/colon-rec ... taged.html

It would be somewhat difficult to talk about treatment without knowing the staging and you should talk to someone on his team (surgeon or oncologist) to get that information. If you have access to the Hospital Portal, then try and get the pathology report as it will often have all of the information that you need to look up the staging and come fairly close. If you can't get the raw pathology report, then talk to your surgeon as he or she should have access to it.

We have an incredible knowledge base here of the players involved, treatments, side-effects, knowledge of hospitals, dealing with logistics, etc. We also have lots of caregivers here supporting spouses and parents with cancer.

We could talk about this stuff but the stuff we talk about might not be applicable so it would be better to get a sense of his staging and then we can give you an idea as to what treatment is like.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal

Piper7486
Posts: 3
Joined: Mon Feb 12, 2018 12:01 pm

Re: Worried wife trying to get information

Postby Piper7486 » Wed Feb 14, 2018 12:03 pm

Thank you all so much for the information we did get the results from the tumor board last night and they are saying stage two. When he had his surgery his colon was perforated and the surgeons were unsure weather perforation was caused by the tumor they told us if that was the case it would considered stage four. Luckily this was not the case. They are however recommending chemo we will meet with his oncologist in two weeks. I just want to make sure we are going in and asking useful questions so we can have as much knowledge as possible.

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O Stoma Mia
Posts: 1450
Joined: Sat Jun 22, 2013 6:29 am

Re: Worried wife trying to get information

Postby O Stoma Mia » Wed Feb 14, 2018 3:01 pm

Piper7486 wrote:...Thank you all so much for the information we did get the results from the tumor board last night and they are saying stage two...

Stage II has three possible levels, Stage IIa, Stage IIb, or Stage IIc.

Which stage was it? This is very important, since the recommended follow-up treatments are different.

Another question: What in fact caused the perforation that they mentioned? It is important to know this, too.

Lee
Posts: 5695
Joined: Sun Apr 16, 2006 4:09 pm

Re: Worried wife trying to get information

Postby Lee » Wed Feb 14, 2018 5:10 pm

Get a copies of (all) the pathology report(s). That should help provide some info. O Stoma Mia can direct you to a site that shows how to read these pathology report.

Get a 3 ring binder and keep copies of all reports, blood words, scans etc. in this one binder.

There is a sticky at the top, "Terminology and abbreviations" which I think will provide a lot of information. First page and last page are most helpful. Here is a link to it.

viewtopic.php?f=1&t=5366

As O Stoma Mia pointed out, find out if it's stage IIa, stage IIb or stage IIc.

Remember you are not alone here.

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

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O Stoma Mia
Posts: 1450
Joined: Sat Jun 22, 2013 6:29 am

Re: Worried wife trying to get information

Postby O Stoma Mia » Wed Feb 14, 2018 11:47 pm

Piper7486 wrote:... I just want to make sure we are going in and asking useful questions so we can have as much knowledge as possible.

NOTE: When you go in for your appointment, it's best to have 2 people: one to ask the questions, and one to write down the answers.

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O Stoma Mia
Posts: 1450
Joined: Sat Jun 22, 2013 6:29 am

Re: Coast Guard health care system

Postby O Stoma Mia » Thu Feb 15, 2018 2:21 am

If you are having trouble navigating the Coast Guard health care system you might find some helpful tips here:

http://allhands.coastguard.dodlive.mil/2016/08/29/tricare-and-you-tools/

What choice of hospitals do you have? Is there any way for you to switch to a better hospital?

Hey Daddy
Posts: 37
Joined: Wed Nov 30, 2016 8:42 am

Re: Worried wife trying to get information

Postby Hey Daddy » Thu Feb 15, 2018 8:24 am

When my son's cancer was first being staged, the cancer was staged as 2b but the tumor was staged as T4 and sometimes referred to as a stage 4 tumor (even though it was stage 2 cancer). The T4 staging for the tumor meant that it had grown through the colon wall and could no longer be regarded as being "contained" so the prognosis was worse and the decision to do chemo was more clear cut. Anyway, you may already understand all of this but it was confusing to me at first. I would want to know to what extent your husband’s colon was obstructed and whether or not the existing perforation (not caused by the tumor) was upstream or downstream from this blockage. I would also ask about the tumor grade (how aggressive it is) and whether or not there is lymphovascular or perineural invasion as these provide avenues for potential spreading. Lastly, given that they are recommending chemo, I would ask your oncologist for suggestions on a second opinion. Best wishes to you both.
DS dx CC Stage IIB (T4N0M0) 3Aug16, 21 yr old
poorly differentiated, lymphovascular and perineural invasion
CEA 29
Colon resection 4Aug16
CEA 2.5
Genetics testing negative
6 mo FOLFOX Sep16 - Mar17
CT Scan Mar17 clear
Colonoscopy Apr17 clear
CEA 1.8
NED
Emergency appendectomy Jun17
Adhesion surgery to clear small bowel obstruction Dec 17

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O Stoma Mia
Posts: 1450
Joined: Sat Jun 22, 2013 6:29 am

Signature template

Postby O Stoma Mia » Thu Feb 15, 2018 8:59 am

It would be good if you could create a signature containing a brief account of the pertinent information known so far. With a signature in place, readers can tell at a glance whether they have anything relevant to say or not.

Here is a signature template along with a link to your signature creation page:

    O Stoma Mia wrote:To create a signature, click on the link below. You can have up to 512 characters (including spaces) in your signature.

    http://coloncancersupport.colonclub.com/ucp.php?i=ucp_profile&mode=signature

    Some items that you could include in your signature are given below:

    Signature Template
    Age & Sex
    DX: Rectal Cancer (RC) or Colon Cancer (CC)
    Tumor Location: If RC, then upper, middle or lower rectum, and distance from anal verge. If CC, then ascending colon, hepatic flexure, transverse colon, splenic flexure, descending colon, sigmoid colon, or recto-sigmoid junction, etc.
    Tumor type: Adenocarcinoma; villous adenoma; signet ring-cell carcinoma, etc.
    Tumor size (in mm or cm)
    Tumor grade:
      G1: Well differentiated (low grade)
      G2: Moderately differentiated (intermediate grade)
      G3: Poorly differentiated (high grade)
      G4: Undifferentiated (high grade)
    TNM code: e,g, T3N0M0, etc
    Stage : Stage I, Stage II, Stage III or Stage IV (with subscript, if applicable)
    Positive lymph nodes: eg., X positive out of Y sampled.
    Mets: Location of metastases, if any (e.g., mets to liver, mets to lungs, etc)
    Baseline CEA value (if known)
    Lymphovascular invasion (LVI) (if known): present vs. absent
    Perineural invasion (PNI) (if known): present vs. absent
    Surgical margins: clear or involved
    MSI status (if known)
    Lynch status (if known)
    KRAS/BRAF status (if known)
    Primary surgery type:
      LAR, ULAR, TME, APR, Laparascopic vs. open resection, polypectomy, proctosigmoidectory, colectomy, hemi-colectomy, sigmoid-colectomy, etc...
    Ostomy surgery: Ileostomy, or colostomy, or no ileo surgery
    Radiation therapy (if any): Chemo/rad
    Chemotherapy (if any): e.g., XELOX, CAPEOX, FOLFOX, etc.
    - - -
    NOTE: Here is a list of acronyms if you need some help in understanding the jargon typically used in signatures:

    List of Acronyms
    http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=5366&p=419139#p419139


rp1954
Posts: 1380
Joined: Mon Jun 13, 2011 1:13 am

Re: Worried wife trying to get information

Postby rp1954 » Thu Feb 15, 2018 9:59 am

I would invest in extra initial blood testing, even though it is most useful and sensitive starting before surgery.

I've had bad personal experience with mealy mouthed or wobbley diagnoses. Some of the most useful and objective data were in doing extra bloodwork. If you don't do chemo, you might do bloodwork more often for the first year, like a better blood panel at 1.5 months between their 3 month blood tests. Their "stage 2" misses kill a lot of people that were preventable. NCCN admits 2 month intervals might be better than 3 months, even without improved treatment options. If something is wrong, or goes wrong, the extra blood work is very useful in knowledgeable hands, and they would, or should slam into monthly blood work, sooner.

Depending on the initial bloodwork, you could even use a liquid biopsy or molecular testing to break impasses and improve odds on a mild oral chemo to beat typical Folfox results ($$$$, not standard and covered by most insurance). e.g. In one webinar the researcher stated that baby aspirin appears to have had a 90% reduction in recurrence in stage 1-3 patients, the fifth who had PIK3CA mutations(at 22:45).
watchful, active caregiver for stage IVb CC since early 2010. immuno"Chemo forever," for mCRC

User avatar
O Stoma Mia
Posts: 1450
Joined: Sat Jun 22, 2013 6:29 am

Re: Worried wife trying to get information

Postby O Stoma Mia » Thu Feb 15, 2018 3:37 pm

rp1954 wrote:I would invest in extra initial blood testing, even though it is most useful and sensitive starting before surgery...

In my opinion, what rp1954 suggests is very important and is time-sensitive -- i.e., there is a window of opportunity when you can do a few things that can make a big difference in the long term. Often, that window-of-opportunity is at the very beginning of the journey, i.e., before active treatment ever begins -- i.e., during the period of time when a newly diagnosed patient is not ordinarily thinking of taking an assertive or pro-active position vis-à-vis the overall problem.

The link given above in rp1954's post is a good example:
For example, after DX and before any kind of treatment is done, the CEA tumor marker should be done in order to establish a baseline value. If it is not done before interventions are started, then the opportunity to have a reference baseline is lost forever. And there are many other examples like this. And some of these things, for whatever reason, might be overlooked by the medical staff who are handling your case.

I guess what I am saying is this: You have two weeks before your meeting with the oncologist. There are some things that you could be doing during these two weeks that could very well be considered long-term investments in your future. Just waiting around for the next round of test results to come in, or waiting for the next appointment date to be finalized don't count, as they are essentially passive activities and they don't change much of anything. What you need to do is to be more proactive as your treatment plan is unfolding.

There are other things that you could be doing that are more pro-active -- for example, checking up on the credentials of all the doctors that have been assigned to you so far, and making an effort to find better ones if the current ones do not have a good record. You can get second opinions on reports, analyses and tests that have been done by your doctors and you may find that there are other doctors out there who have a better grasp of your situation. And you can even decide that you are going to change doctors.

It's the same for hospitals, clinics and other health care institutions. There are accreditation standards established for hospitals that can be checked out. In the case of cancer treatment, there is a three-tier structure of accreditation, with the highest being NCI-designated Comprehensive Cancer Centers, of which there are 69 in the US located in 35 different states. Below that are the hospitals accredited simply as "Cancer Centers" and below that are all of the unaccredited hospitals. Thus, at the very beginning the patient should take a serious look at the hospital, clinic that has been chosen It may not be the best one that could be lined up. Generally speaking, the best hospital, if you can manage it, would be a high-volume comprehensive cancer center with a number of Board Certified colorectal surgeons, Board Certified radiology oncologists, and Board Certified medical oncologists.


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