Things people say or don't say but it's okay

[MissMolly]

I have lived a "clean" life for virtually all of my 56 years. I am a vegan and select organic foods and personal care products (soaps, shampoos, toothpaste) without parabens or chemical stabilizers. I have been a long-distance runner since my teens and have never weighed over 90 pounds. I have never smoked or imbied in alcohol. And yet, I have broad endocrine failure and an extremely fragile state of health.

Bad things happen to good people.

One area that I feel strongly about in promoting a healthy diet is to steer clear of processed foods with high fructose corn syrup. High fructose corn syrup is a caustic additive to our food supply - leading to metabolic syndrome, type II diabetes and its sequella. If people can make just one dietary change, selecting foods without high fructose corn syrup would earn my vote.

PET Scans studies of the brain have shown that the areas of the brain corellating to pleasure lite up when a person has ingested food with high fructose corn syrup. Food manufacturers are knowingly targeting pleasure centers in the brain by adding high fructose corn syrup.

Read the labels on the foods that you routinely buy. If high fructose corn syrup is listed as an ingredient, place the package back on the shelf.

Small changes in lifestyle and food choices can make a difference. Small changes, collectively, can make a positive contribution to one's underlying health.
- Karen -

[mpbser]

Bev, I just looked at the MSK site again and there is this note re: staging:

The T stages are part of the TNM Staging System, which uses TNM classifications to describe the extent of cancer in a patient's body. T describes the size of the tumor and whether it has invaded nearby tissue; N describes whether regional lymph nodes are involved and, if so, how extensively; and M describes whether distant metastasis (spread of cancer from one body part to another) is present. The system is maintained by the Union for International Cancer Control (UICC) and the American Joint Committee on Cancer (AJCC) and is updated periodically.

I went back into our records to confirm Stage and this is what it says: pT3N2bM1a

OK, so I plug in the values (modifying the "what area of the colon" answer to transverse now that we found tumor #2 in the transverse area) with 3 in the Stage section and get: 5yr 82% 10yr 76%

[Bev G]

Christine,

Obviously you didn't understand my post. You've done a tremendous amount of reading and it's hard for me to understand what you are not understanding. The TNM system is NOT the same as colon cancer staging. Any spread to a distant organ is STAGE IV disease. You mentioned your husband's liver "spot" is indeed a malignancy. This makes him a stage IV. If there is a single liver met, and no other metastatic disease identified he is a stage IVa. Google "colon cancer staging" for further information.

Good luck.

PS This is from your post on May 28th:
Stage IV A
Any T, Any N, M1a: The cancer may or may not have grown through the wall of the colon or rectum, and it may or may not have spread to nearby lymph nodes. It has spread to 1 distant organ (such as the liver or lung) or set of lymph nodes (M1a).

[ams5796]

Christine,

You have to realize that there are many folks on this board, like Bev, who have been around a long time, who have a lot of knowledge, and have experienced a lot especially when it comes to cancer. We're here to help each other. You may want to take a step back and be grateful that you can get so much great information from the folks here. Instead of trying to "teach" us about cancer you will probably be able to learn a lot. We've been in the trenches for many years and have come away from it with more knowledge about cancer than we wish we had.

Ann

[juliej]

No way I have enough time to read all of your links. I did want to let you know that the MSKCC nomogram is NOT valid for those of us with mCRC (which I believe your husband has), so it's not useful to use that nomogram for us stage IV folks. Probably using ACA website is a better source for prognostic info.

Bev is correct. Look at the reference at the bottom of the page on the MSKCC Nomogram for "NonOverall Survival Probability Following Surgery."

https://www.mskcc.org/nomograms/colorectal/overall-survival-probability

Scroll down until you see "Supporting Publications - 5-Year Overall Survival After Surgery" at the bottom of the page. Click the link and it goes to this article, "Predicting survival after curative colectomy for cancer: individualizing colon cancer staging" from the Journal of Clinical Oncology, which is what the nomogram was based on.

https://www.ncbi.nlm.nih.gov/pubmed/22084366

Scroll down until you see "images from this publication."

Click on the second one - Overall Survival (Probability) in Time (Months).

Notice how the colored lines correspond to Stages? Overall survival is shown by stage, in decreasing order, as follows: I, IIIA, IIA, IIB, IIIB, IIC, IIIC. Notice how the top stage is Stage IIIC? There are no stats for Stage 4. So the nomogram doesn't apply to Stage 4's.

Here's a link to the whole article if you're interested in reading it.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3664036/

[mpbser]

Julie, Thanks! I didn't see those areas of the site. I will definitely look at those when I get a chance.

[Lee]

Christine,

You have to realize that there are many folks on this board, like Bev, who have been around a long time, who have a lot of knowledge, and have experienced a lot especially when it comes to cancer. We're here to help each other. You may want to take a step back and be grateful that you can get so much great information from the folks here. Instead of trying to "teach" us about cancer you will probably be able to learn a lot. We've been in the trenches for many years and have come away from it with more knowledge about cancer than we wish we had.

Ann

Ditto to what Ann said. This site was not here when I was going thru radiation, surgery and chemo. I had to do it blind, and a lot of faith in my team of Dr.(s). There were a few other sites, BUTT nothing with the same knowledge coming from this site. This is a TRUE blessing if you are just starting the journey. The support and knowledge here, there is nothing else like it. Hopefully in time, you will come to understand we do have your back.

We have all walked in you and your DH's shoes.

Lee

Edited to add, even those comments you don't like, please understand we are trying to help you and your husband. Some of us are a bit more blunt than others, butt make no mistake, the comments you read, you might want to heed. There's a bit of knowledge in them those words.

[mpbser]

Ann and Lee,

I am all about getting information. That's essentially why I came here and am still here.

My husband first came here mostly for emotional support but was treated with sarcasm, pushed towards treatments, told to "stop sniveling," and was responded to with a variety of ad hominems so he left in disgust at how nasty and bullying the commentary was.

I can't see how comments such as "stop sniveling" impart any knowledge or information. That's just not blunt but downright rude and particularly vile when said to a newly diagnosed person with cancer. I honestly do not understand how such behavior can be tolerated on a board that is here to support people with cancer and their loved ones.

Anyway, I greatly appreciate the useful, helpful, non-disparaging commentary. I look forward to more of it!

I need to get to work now, and will be away until Tuesday. Have a great weekend.

- Christine

[ams5796]

Christine,

I'm sorry that you and your husband had to deal with such unpleasant posts on this forum. I didn't see those, but I don't doubt that it happened. As I said before I've been on here for many years and I have seen a lot of nasty posts from nasty people. Sometimes those posts are from people who have A LOT on their plates and who are in a particularly a rough patch of life. Those people I try to give a pass to because generally the people on here are really having a tough time. The other folks that just like to be nasty I try to avoid. (there is a way to block people) I never read their threads or their posts. There have been times that the nastiness has gotten out of hand and I've taken breaks from the forum. There are lots of other places online to get information and support. But, I always come back because the majority of folks on here are so good. Most want to help and so many are brilliant. I hope you and your husband will give us another chance. I think as you guys get to know the "tone" of the forum you'll be able to proceed accordingly. I know that you'll get a lot out of being here.

Have a good weekend.

Ann

[Lee]

Ann and Lee,
I can't see how comments such as "stop sniveling" impart any knowledge or information. That's just not blunt but downright rude and particularly vile when said to a newly diagnosed person with cancer. I honestly do not understand how such behavior can be tolerated on a board that is here to support people with cancer and their loved ones.

There tends to be 2 sides to every story. As for name calling, your DH threw the first punch. Your DH asked for help, butt if he didn't like like what was being said, he became very accusatory. In my opinion, your DH came across as being "childish" and I am of the opinion, that comment was not out of line.

Lee

[ams5796]

Yes, I just went through and read that original thread that you're talking about. My first thought was that there was no bullying or nastiness involved. You guys are in for a long journey and you might want to toughen up. This isn't going to be easy. You're going to be dealing with lots of folks if you choose to do treatment and not everyone will care about your feelings. This forum works both ways. You will be treated the same way you treat others. If you're confrontational or insulting you will be treated that way too. You have to give kindness and support in order to get kindness and support.


Ann

[Utwo]

Bowel cancer is probably one of the cancers where lifestyle habits have the highest impact on risk. (ME: no duh) Therefore, lifestyle habits have the highest impact on cure. In other words, when it is estimated that 47% of colorectal cancers could be prevented by appropriate lifestyles ...

As far as I know higher risk of colon cancer in the East (Korea, Taiwan, Japan) is caused by their diet. It's information from a knowledgeable friend and I do not have a link.

However in the West, more than 50% of all cancer cases (excluding lung cancer and other similar cancers) are caused by a game of chance.
The dice just have been rolled a particular way.

Based on Google search (Medline, Medscape or whatever doctors are searching) my son told me that 2/3 of all cancer cases are random and are not caused by life style.
Also he told me (based on the same source) that a more "healthy" lifestyle would have a negligible effect on probability of recurrence.
Basically he told me "Eat what you want dad".

[Utwo]

One of my friends is studying to become a Doctor of Traditional Chinese Medicine.
She told me that they have strict guidelines not to treat such illnesses as severe heart/kidney deficiency, cancer etc.

As an exception some TCM doctors can treat cancer patients to alleviate their symptoms, however their standard recommendation would be to direct a patient to a western doctor in this case.
I understand that exactly the same guidelines are used in mainland China as well.

Apparently these Chinese guys with such a heavy experimentation with natural remedies for a few thousand years were not able to find a natural cure for cancer.

It makes sense to wait for a better statistical evidence that all these carrot and blueberry juices can act as efficient cancer cure.

[benben]

Hi Benben,
I think your right about the path being difficult. It certainly helps your general health to be in good shape.
I think we have all made numerous attempts to try and get some control on a situation that feels largely out of control . The more my mum has to endure the more I realise developing strategies to deal with coping with the unknown was more helpful.
Some people made suggestions to my mum from their nursing experience that ended thirty years ago. It created a problem but I had to work round it as it was fixed in her mind . However with time it subsided.
Time changes our knowledge and our approach .
Take care everyone ,
Stu

Stu, you're a stand up Son! Your mum, is quite lucky to have you around to help.
It's not easy for the caregivers by any means, and while a lot of people may throw out the random suggestions of helping - they generally don't take any steps to follow through.
I admire your ability and determination to not just be an occasional helping hand but someone that actually is taking the time to gain more knowledge about what she's going through so that you can assist more effectively.

I've got a great son too, he's just 17 but he's been the most help out of anyone thus far.
I'm blessed to have him in my life. Sounds like your mum is just as blessed.

Take care,

[stu]

Oh I have a wee confession . I am a daughter. I had trouble posting about six years ago so tried using my son's name . Stewart! He is 17 too. I am so touched your son has been so mature. My son has been great with his support when my mum is ill but he is also great at picking up on my needs too.
I have decided against trying to gain an associate Medical doctorate specialising in oncology. I thought even a bad oncologist must be better clinically than my novice status . But I keep ahead of what is coming through and decided a supportive role was probably much more useful to her.
I have learnt loads and totally change along the way.
I wish you every success and you must be a good dad. There is a reason I support my mum!!!
Take care,
Stu