newly diagnosed newbie

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DarknessEmbraced
Posts: 3128
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: newly diagnosed newbie

Postby DarknessEmbraced » Thu Apr 27, 2017 3:26 pm

I'm glad you have such a proactive doctor! :)
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17

Lee
Posts: 5681
Joined: Sun Apr 16, 2006 4:09 pm

Re: newly diagnosed newbie

Postby Lee » Thu Apr 27, 2017 4:55 pm

mpbser wrote:I was finally able to get online to see my medical records and I haven't really been given a full picture. This is disheartening:

IMPRESSION:

2. Prominent lymph nodes seen adjacent to the LEFT colon mass likely representing regional nodal metastasis.
3. No evidence of distant metastatic disease however evaluation of the liver is limited because of contrast phase.


Really it's not that bad. My tumor was 8 by 11cm. Sounds like yours is much smaller.

It does sound like you most likely is a stage III. For that reason, I would HIGHLY, HIGHLY, recommend chemo follow your surgery. You really want to kill off those floating cells in your body, NOW! Don't give those cells a chance to find a new place in your body to grow.

Remember one day at a time.

Have your confirmed if your surgeon is a board certified colon rectal surgeon?

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!

mpbser
Posts: 474
Joined: Wed Apr 19, 2017 11:52 am

Re: newly diagnosed newbie

Postby mpbser » Thu Apr 27, 2017 5:43 pm

Have your confirmed if your surgeon is a board certified colon rectal surgeon?

It's been on my mind to try to find out. He's listed at the hospital as General Surgeon.... from his profile it doesn't look like it:

http://svhealthcare.org/physician-direc ... pe-john-j/
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
CEA: 1.4, 2.1, 1.5, 1.9, 1.9, 2.1, 2.1, 2.4, 1.7, 2.0
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53
Liver left hepatectomy seg 4 1/31/18
5/18 NED

Lee
Posts: 5681
Joined: Sun Apr 16, 2006 4:09 pm

Re: newly diagnosed newbie

Postby Lee » Thu Apr 27, 2017 10:17 pm

mpbser wrote:
It's been on my mind to try to find out. He's listed at the hospital as General Surgeon.... from his profile it doesn't look like it:

http://svhealthcare.org/physician-direc ... pe-john-j/


If you are happy with him, go with it. If you were dealing with rectal cancer I would really be pushing for a board certified colon rectal surgeon. The fact that he order a few test at time of your diagnoses, says he's done this type of surgery before.

All the best,

Lee

P.S. when you are quoting someone, don't delete the quote margin. Example, [quote= mpbser] or [quote=Lee]. at the beginning of the quote & at the end of quote. The quote will be highlighted and stand out as a quote. It took me a few times to figure it out.
Last edited by Lee on Thu Apr 27, 2017 10:26 pm, edited 1 time in total.
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!

Lee
Posts: 5681
Joined: Sun Apr 16, 2006 4:09 pm

Re: newly diagnosed newbie

Postby Lee » Thu Apr 27, 2017 10:22 pm

deleted, see I mess up too. going to bed, Good night one and all.
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!

Lydia666
Posts: 673
Joined: Sat Jun 06, 2015 6:50 pm
Location: Montreal, Canada

Re: newly diagnosed newbie

Postby Lydia666 » Fri Apr 28, 2017 4:59 am

mpbser wrote:Thanks, again, for the comments!

I went to a nutritionist yesterday at the recommendation of my primary care doctor. I told her that I have been eating broccoli on a regular basis now and made other drastic dietary changes (I was also diagnosed with diabetes within the past month). She actually told me to cut down on the broccoli. Sorry, but I know people who have reversed Stage IV cancers naturally with hard core raw foods vegan diet, supplementation, and exercise, so I have absolutely no faith in a nutritionist who recommends cutting down on broccoli.

I'm even on the fence about surgery and most definitely about chemo, so this is a very hard slog for me!

My advice is to let the docs take care of you. We put so much pressure on ourselves to know everything and that's an impossible mission. The info we have available may not be accurate or may not apply to us. Find competent docs that you trust and go with their advice.
One very intelligent person on this forum has said something that stuck with me. At the beginning of her journey she researched and researched hoping that if she was extremely informed, all will be well. Years later she said- find a good oncologist that you trust and let them do their job, and you enjoy your life that is not cancer related. I could not agree more. Be aware of what's going on with your treatments etc but i would use this forum for moral support and not too much for medical info.
Oct 2012- thyroid cancer
June 19, 2015 Dx@39 yrs- CRC-T3N1M0
No vascular, no perineural invasion
Aug-Sept 2015- 28 rad/5FU
Oct 28, 2015- LAR- temp ileo, neg. nodes- 0/11
March 2016- 6 rounds Xeloda/positive CHEK2 mutation
July 2016- ileo reversal
August 2016- DCIS
Feb 24,2017- prophylactic double mastectomy
May 2018 - clean CT
Sept 2018-clean scope
Devastation, total shock- oct 2018, invasion of peri mets
Mom to 4 & 7 yrs kids (6 mo. & 3.5 yrs at diagnosis in June 2015)

JJH
Posts: 167
Joined: Mon Apr 24, 2017 7:26 am
Location: Europe

Re: newly diagnosed newbie

Postby JJH » Fri Apr 28, 2017 8:45 am

mpbser wrote:Have your confirmed if your surgeon is a board certified colon rectal surgeon?

It's been on my mind to try to find out. He's listed at the hospital as General Surgeon.... from his profile it doesn't look like it:

http://svhealthcare.org/physician-direc ... pe-john-j/

FYI --According to the certification.website, your surgeon is a Board Certified General Surgeon with a certified sub-specialty of Surgical Critical.Care, so it looks like you are in good hands. If your oncologist is the one at the same facility, then she is listed as Board Certified in Internal Medicine, with a certified sub-specialty of Medical Oncology.

Basil
Posts: 244
Joined: Thu Mar 16, 2017 12:33 pm

Re: newly diagnosed newbie

Postby Basil » Fri Apr 28, 2017 9:20 pm

For the love of God fool, listen to what the cancer doctors, with tens of thousands of hours of scientific data behind their recommendations, have to say. They will be the ones to save your life if you're interested.
40 y/o male, kids 6&9
Dx 3/16/17, rectal cancer s3,t3,n1,m0
PROSPCT trial (FOLFOX in lieu of chemorad)
FOLFOX 4/5/17 - 6/26/17
LAR 7/31/17, temp ileo
pathological complete response
Adjuvant chemo cancelled (IDEA Study)
Ileo reversed 9/25/17
NED
1 year scans - clear

rp1954
Posts: 1379
Joined: Mon Jun 13, 2011 1:13 am

Re: newly diagnosed newbie

Postby rp1954 » Sat Apr 29, 2017 3:04 pm

Basil wrote:For the love of God fool, listen to what the cancer doctors, with tens of thousands of hours of scientific data behind their recommendations, have to say.

If only it were that simple. Which doctors? There are many distinctions and differences that are possible as to "best" for the individual beyond standard advice. Time pressured choices that have big consequences and potential benefits.

For both conventional and nonconventional medicine there are what might be called dogma traps.

They will be the ones to save your life if you're interested.

Mmmmm, for most people that might be true if they don't have any extra resources. Outstanding surgeons best fit this broad statement. For oncology, Kemeny and HAI for multiple liver mets, this appears true. However many stories here suggest that an empowered, nondogmatic, questioning individual can often improve their own odds and outcomes, even if there are no absolute guarantees.
Last edited by rp1954 on Sat Apr 29, 2017 3:21 pm, edited 1 time in total.
watchful, active caregiver for stage IVb CC since early 2010. immuno"Chemo forever," for mCRC

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LPL
Posts: 410
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: newly diagnosed newbie

Postby LPL » Sat Apr 29, 2017 3:20 pm

I felt really sad seeing a post/someone here calling a newly diagnosed member "a fool" !
It is a scary time being newly diagnosed (also for caregivers as I have experienced) and words matter!!!
Please do not use that kind of words.
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma pt 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a Stage IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED for now :D
:!: Steroid induced hyperglycemia dx after 3chemo .. hospitalized, insulin -> Metformin
Surgeries (open):
3/18 Emergency colostomy 5/23 Primary+gallbl+colostomy reversal (+port) 9/01 Liver mets

User avatar
CRguy
Posts: 9620
Joined: Sun Feb 10, 2008 6:00 pm

Re: newly diagnosed newbie

Postby CRguy » Sat Apr 29, 2017 8:31 pm

I respectfully submit :
Maggie Nell wrote:.........
So do not wait for aches and pains
To have a surgeon mend your drains;

If he says “cancer” you’re a dunce
Unless you have it out at once,


For if you wait it’s sure to swell,
And may have progeny as well.
........ J. B. S. Haldane (1964)

NOT to condone name calling or personal attacks, BUTT I believe the OP has received an
extremely balanced, supportive and informative response thread to the original issues at hand.

Sometimes in the heat of the moment, folks just shoot from the hip, including the OP .... NOT always with the best results nor evil intent.
I have .... for the past 9 years here.... and intend to for the next 20, or however long I have left.... :shock:

Folks just need to remember we are ALL on this Journey at some stage of "dealing" with it,
and WE ALL HAVE different levels of knowledge and experience

= HARMONY

JMO
CRguy
Caregiver x 3
Stage IV A rectal cancer/lung met
11 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

mpbser
Posts: 474
Joined: Wed Apr 19, 2017 11:52 am

Re: newly diagnosed newbie

Postby mpbser » Sun Apr 30, 2017 6:19 am

I have come across some anecdotal evidence that alternatives work:

http://www.activistpost.com/2012/07/wom ... oming.html

http://www.chrisbeatcancer.com/

http://weartv.com/news/local/local-man- ... -naturally

http://radicalremission.com/

http://www.medscape.com/viewarticle/827945

http://discovermagazine.com/2007/sep/th ... -sometimes

http://www.chicagotribune.com/lifestyle ... story.html

http://www.nytimes.com/2009/10/27/health/27canc.html

http://www.anticancermom.com/how-i-beat-cancer/

http://www.healingcancernaturally.com/n ... nials.html

http://www.bbc.com/future/story/2015030 ... ing-cancer

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3312698/ (I love the use of the term "spontaneous" as if some divine miracle is at play. *sarcasm*)

http://naturalsociety.com/shocking-stud ... nd-common/ (Mentions the AMA and its inextricable ties with Big Pharma, which is discussed in detail in the book Cancer: Get Out of the Box)

thecancerassassin.blogspot.com (An interesting case of a combination of natural and conventional methods)

http://www.prevention.com/food/food-rem ... res-cancer

https://www.amazon.com/Harvard-Document ... 0997548207

http://www.extremehealthradio.com/the-1 ... ld-follow/

http://www.naturalnews.com/047924_lung_ ... juana.html (An acquaintance of mine has put his cancer into remission with Hoxey diet and CBD.)

and many many many stories at another forum, e.g.:

have several friends that have been diagnosed with various types of cancer who went to the BioMedical Center in Tijuana for treatment. They've all returned cancer free. The people that I personally know are one stomach cancer (cancer free for 50 years), one lung cancer (cancer free for 20 years), one bone cancer (cancer free for around 5-6 years) and one skin cancer (cancer free for 3 years), and my friend with skin cancer met a lady on the bus going to the clinic that was a nurse...she said that her cancer had spread somewhere in the neck area, I forget exactly where it spread and what type of cancer that she had. Anyway, she said that doctors in the states had given up on her 4 years ago and had told her to get her affairs in order. She started treatment at the Hoxsey clinic and 4 years later she was on that bus telling her story. If you read up on the Hoxsey treatment, I've found a wide variety of what their "success rate" is. I've found anywhere from "little to no evidence" to 85% success rate. I was told that they once had 13 clinics in the states that were all shut down and that they had a 75% success rate when they were here. I'd like to hear from people who either are on the Hoxsey Treatment themselves, or who knows someone that was on the Hoxsey treatment. I'm not interested in any of the other treatment facilities in Tijuana, Mexico. Just the Hoxsey treatment...

I have a friend who had a melanoma on her arm and the doctors wanted to take all the flesh off her arm from the shoulder to the wrist. She went to the Hoxsey clinic in 1974. At that time the life time treatment was only $600 dollars. She had to give up: white flour, white sugar, table salt, vinegar, alcohol, carbonation, pork, and tomatoes. She is 73 years old today and still cancer free. She still goes down every two or three years.

I have a friend that was diagnosed with 4 brain tumors several years ago. About 18 years ago she was given 2 months to live. After hearing that an older relative had breast cancer and went to the Hoxsey clinic she gave it a shot. 18 years later she's healthy and has had the chance to see all 3 of her daughters get married and have children, something doctors told her she'd never see. I tell everyone about the Hoxsey clinic, I'm a firm believer in it and I've seen it work.

My mom was diagnosed with Mestatic Colon cancer November 2006.  We went through the standard 5fu, CPT11, luecavorin regiment until March during which time she almost died twice (from the chemo, not the cancer).  She was one in 10,000 who couldn't tolerate the CPT11, which was regretful, because it seemed to be the only part of the regiment that was bring her numbers down.
In March, as a family, we decided to take her to Mexico to the Hoxsey clinic and completely abandon her chemotherapy.  Her doctor's all thought we were completely foolish, even though it was obvious to us all the the chemo wasn't doing any good.  The doctors in Mexico put Mom on a strict diet (tolerable however), and gave her a hoxsey tonic.  In June she also had a very successful liver resection (the one place the cancer had spread to after the colon was her liver).  By late August Mom's CEA level is down to 4.3.  We are amazed.  Not only by her falling CEA, but also by how healthy she is.  The chemo tore her down.  It was agonizing for all her kids to see her suffer to horribly.  It is awesome to see her able to do what she wants to and be back to herself again.
I would recommend the hoxsey clinic to anyone who is dealing with cancer.  It isn't a sure thing (as the doctor's down there told us also), but neither is chemo. 

I would recommend the Hoxsey treatment as well.  My grandfather and mother have both been on the Hoxsey Tonic and followed the Hoxsey diet.  The first time my mother went was back in the 1970's for cervical cancer.  She went again a few months ago for skin cancer.  My grandfather was diagnosed with bladder cancer, went to the BioMedical Clinic, and 6 months later was cancer free. 

And, again, regarding those commentators who keep trying to bully me into conventional treatments, my wife says that they should take care not to give medical advice.

Information is one thing, but advice is another.
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
CEA: 1.4, 2.1, 1.5, 1.9, 1.9, 2.1, 2.1, 2.4, 1.7, 2.0
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53
Liver left hepatectomy seg 4 1/31/18
5/18 NED

cbsmith
Posts: 67
Joined: Sat Nov 28, 2015 11:45 am
Location: New Brunswick, Canada

Re: newly diagnosed newbie

Postby cbsmith » Sun Apr 30, 2017 11:36 am

I'm not trying to downplay the information you are finding or the treatment path you are looking to go down but have you noticed the one thing all of those stories hav in common? It is always I have a friend, or I know someone. Unless you can find the actual people who did it and if they are still alive, please take it with a grain of salt as the stories sometimes get altered a little bit as they are passed down, or the person telling the story doesn't have all the details.
06/14-DX with FAP as 36yo Male
07/14-total colectomy, rectum removal, permanent ileostomy
08/14-DX Stage IIIC colon cancer KRAS mutant, MSS
09/14-12 rounds of FOLFOX
04/15-ended FOLFOX
07/15-CT showed one para-aortic lymph node, onc thought inflammation and said wait 3 mths
10/15-DX Stage IV, CT showed lymph node tripled in size and 1 small lung met
11/15-FOLFIRI + Avastin
06/16-lymph node is stable, now have a 2nd lung met
01/16-lymph node is stable, lung mets grown 2mm. Still on FOLFIRI + Avastin

User avatar
peanut_8
Posts: 2273
Joined: Sun May 25, 2014 1:31 pm
Location: Capital of Texas

Re: newly diagnosed newbie

Postby peanut_8 » Sun Apr 30, 2017 2:09 pm

mpbser wrote:

In March, as a family, we decided to take her to Mexico to the Hoxsey clinic and completely abandon her chemotherapy.  Her doctor's all thought we were completely foolish, even though it was obvious to us all the the chemo wasn't doing any good.  The doctors in Mexico put Mom on a strict diet (tolerable however), and gave her a hoxsey tonic.  In June she also had a very successful liver resection (the one place the cancer had spread to after the colon was her liver).  By late August Mom's CEA level is down to 4.3.  We are amazed.  Not only by her falling CEA, but also by how healthy she is.  The chemo tore her down.  It was agonizing for all her kids to see her suffer to horribly.  It is awesome to see her able to do what she wants to and be back to herself again.
I would recommend the hoxsey clinic to anyone who is dealing with cancer.  It isn't a sure thing (as the doctor's down there told us also), but neither is chemo. 

I would recommend the Hoxsey treatment as well.  My grandfather and mother have both been on the Hoxsey Tonic and followed the Hoxsey diet.  The first time my mother went was back in the 1970's for cervical cancer.  She went again a few months ago for skin cancer.  My grandfather was diagnosed with bladder cancer, went to the BioMedical Clinic, and 6 months later was cancer free. 

And, again, regarding those commentators who keep trying to bully me into conventional treatments, my wife says that they should take care not to give medical advice.

Information is one thing, but advice is another.



Are you a medical doctor?
Terri aka peanut
diagnosed Jan 14, RC stage 2a, age 56
permanent colostomy
MSS
April 14, 28 chemo/rad with Xeloda
June 14 adjuvant Xeloda 6 rounds
currently NED

mpbser
Posts: 474
Joined: Wed Apr 19, 2017 11:52 am

Re: newly diagnosed newbie

Postby mpbser » Sun Apr 30, 2017 2:32 pm

No, I am not and I'm not sure what that has to do with anything.

As I have already written, my wife is an attorney. Just as one cannot practice law without a license, and this includes giving legal advice, similar rules apply to medical practice.
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
CEA: 1.4, 2.1, 1.5, 1.9, 1.9, 2.1, 2.1, 2.4, 1.7, 2.0
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53
Liver left hepatectomy seg 4 1/31/18
5/18 NED


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