Maybe a problem ...

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deaconblues
Posts: 5
Joined: Sat Nov 03, 2018 8:14 am

Maybe a problem ...

Postby deaconblues » Sat Nov 03, 2018 8:26 am

Hello colon aware people.

I am hoping to get some advice here. About 10 years ago I was in the steady habit of doing a digital self exam. I found something and convinced an ER friend of mine to get me a referral to a colon doc. The professional check was negative. I am a slight hypochondriac, not bad, so I was still worried and demanded the doc check again. He did and still nothing. I didnt really notice at the time that he was mostly checking forward of my rectum, towards the prostate. Still I knew I had found something but I rationalized that he was the expert and maybe I like rubbed my vertebrae through the rectum wall or something. At that time the rough or hard or lumpy ... irregular lets say ... spot was about the size of a grain of rice, sort of along a tissue ridge.

I had just lost my last job then and its been not much ever since. Also I was the primary caregiver then and now for my octogenarian parents. I have no real money and no insurance, then and now.

Flash forward to a few days ago and on a whim I did a digital exam. I fell out of practice having no regular schedule as no employment. And I found the same place, exactly the same place. Only now it is much bigger, several lumps and ridges and in an irregular pattern.

So, the advice I am looking for is many types:

1) How do I handle this the best way given my lack of finances?
2) How do I prevent the worst insurance issues or lack of service issues going forward?
3) Of course, what the heck is my best set of next steps?
4) Are there any alternative treatments with a high rate of success known?

Lee
Posts: 5723
Joined: Sun Apr 16, 2006 4:09 pm

Re: Maybe a problem ...

Postby Lee » Sat Nov 03, 2018 5:09 pm

Hi and welcome,

How old are you? Does colon cancer run in your family? Where are you (USA or some other country)?

If you are in the USA, look into ObamaCare. Since you are unemployed, it should cost you little to nothing.

Please understand, we are not doctors, just survivors and family members. This GI doc that you saw, what exactly did s/he do? What did this GI doc says? If this GI doc did not find anything wrong, I think you were okay then, so I'm not sure what is going on with you today.

If you are concerned, find another GI doc, many will cut the cost if you pay cash for there services.

Sorry, I know this did not help much, butt good luck,

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!

hiker
Posts: 74
Joined: Thu Aug 09, 2018 10:15 am

Re: Maybe a problem ...

Postby hiker » Sat Nov 03, 2018 6:31 pm

Hey deacon,

The only way to get an accurate diagnosis is via a colonoscopy. Like Lee said, many doctors will cut you a break if you're paying cash. See if they will give you the Medicare reimbursement price.

Once you get the results of the scope, then you can move forward.

The affordable care act (ACA) can provide health insurance in certain situations, but you have to be careful. It's based on the county you live in, your marital status, your dependents, and income as a percentage of the federal poverty level. If you have little to no income, you will most likely be forced onto your state's Medicaid. If your income is too high (which is really not very high under the ACA), you will not qualify for any subsidies so you'll pay the full premium (which can be astronomical). It's only those folks who fall somewhere in the middle who qualify for ACA coverage and subsidies.

I'm certainly not saying it couldn't apply to you, but don't make any decisions until you get all the info.

hiker
Colonoscopy 2/17, 5cm tumor descending
Diagnosed stage iv, liver mets 3/17
Colon resection 3/17
Told surgery not an option, get my affairs in order
Meet w/MSK team 5/01/17
Folfox(3rds) 5/17-6/17
Liver resection/implant HAI pump 7/17
HAI pump chemo(5rds) 8/17-2/18
Folfiri+Vectibix(11rds) 8/17-2/18
Spot on chest CT 10/17
Lung biopsy (that was fun) 11/17
Nocardia bacterial infection w/spread to brain (this is serious) 11/17
IV antibiotics 12/17-2/18
Oral antibiotics 3/18-present
Clear of cancer since surgery

deaconblues
Posts: 5
Joined: Sat Nov 03, 2018 8:14 am

Re: Maybe a problem ...

Postby deaconblues » Sun Nov 04, 2018 2:28 am

Lee wrote:Hi and welcome,

How old are you?

52

Lee wrote:Does colon cancer run in your family?

Adopted, unknown.

Lee wrote:Where are you (USA or some other country)?

The beautiful hellhole of Alabama.

Lee wrote:If you are in the USA, look into ObamaCare. Since you are unemployed, it should cost you little to nothing.

Nothing would be fine. I do not have even a little income. That changes off an on, but, with no steady income, that is no income essentially at times, most of the time.

Lee wrote:Please understand, we are not doctors, just survivors and family members.

I understand that. I need well informed advice at this stage, no doctors I think until I am ready. The system does not treat a person fairly. I have to work the system and I do not know how to.

Lee wrote:This GI doc that you saw, what exactly did s/he do?

That was like 10 years ago. Basic gloves on hand rectal examination i think and little beyond that. Discussion ... kind of pointless and what I call the lack of professionalism may end up killing me, along with my response which was to drop diligence, which had been very strong for me. I have not been to any doctors in like 6-7 years.

Lee wrote:What did this GI doc says? If this GI doc did not find anything wrong, I think you were okay then, so I'm not sure what is going on with you today.

I do not think so. It was the exact same hard ridge place in my rectum or something that can be felt from inside the rectum wall. Now its bigger. If we had addressed it properly then, which I tired to do, and the system failed to do, then I might not be here now. It's all conjecture of course. If I have the oncogene, it almost does not matter. But I did my part, and the system failed (as usual).

Lee wrote:If you are concerned, find another GI doc, many will cut the cost if you pay cash for there services.

That I can do. I am just afraid that once the diagnosis is on the books, I will have trouble should I get employment in the future. When my father passes, I will be essentially homeless.

Lee wrote:Sorry, I know this did not help much, butt good luck,

I appreciate all well intended advice. That is why I am here. Thank you.

deaconblues
Posts: 5
Joined: Sat Nov 03, 2018 8:14 am

Re: Maybe a problem ...

Postby deaconblues » Sun Nov 04, 2018 2:38 am

hiker wrote:Hey deacon,

The only way to get an accurate diagnosis is via a colonoscopy. Like Lee said, many doctors will cut you a break if you're paying cash. See if they will give you the Medicare reimbursement price.

I plan to go Monday. I just need to know the dangers of being diagnosed with respect to the system paperwork. I had a kidney stone about 8 years back and the hospital told me I had to fill out a form and a charity organization would handle it. I told them, look, if they don't pay, I can't pay. They said they understood. I filled out the form and sent it in and then the hospital billed me. Over $7000 for a kidney stone. I called them and explained the charity thing. They said they sent a piece of mail to me and they did not I was still at same address. So they lie and they fail and suddenly I owe $7000? I cannot go through that crap again. I'd rather die, seriously.

hiker wrote:Once you get the results of the scope, then you can move forward.

I know, but of course there is a fair amount of terror here. I am more terrified of the system and unfairness than I am of the cancer.

hiker wrote:The affordable care act (ACA) can provide health insurance in certain situations, but you have to be careful. It's based on the county you live in, your marital status, your dependents, and income as a percentage of the federal poverty level. If you have little to no income, you will most likely be forced onto your state's Medicaid. If your income is too high (which is really not very high under the ACA), you will not qualify for any subsidies so you'll pay the full premium (which can be astronomical). It's only those folks who fall somewhere in the middle who qualify for ACA coverage and subsidies.

I really do not do paperwork well. Like almost never. I detest it. I just want to find a person who knows the situation and ask. Alabama, single, 0 dependents, no income or what I call income. I live on my father's dime and I do all the caregiver things for him, but now he is on hospice and my time before having to deal again with nonsensical immoral society is coming.

hiker wrote:I'm certainly not saying it couldn't apply to you, but don't make any decisions until you get all the info.

Well, I am here for that info, but, I suppose it varies by state, which has always been ridiculous. The situation DOES NOT vary by state in reality, only amid delusion. But that is my attitude showing.

Anyway, that sis why I get frustrated and end up just living as long as I can without seeing a doctor. Interaction with insanity causes extreme anger.

martd
Posts: 54
Joined: Tue Nov 21, 2017 3:48 pm

Re: Maybe a problem ...

Postby martd » Sun Nov 04, 2018 11:42 am

You're complaining about doing paperwork? There are people on this forum fighting for their lives and you want them to figure out your medical insurance problems because you detest paperwork? You received alot of excellent advise here now all you have to do is put in a little effort and apply it. You may feel it's not possible but it definitely is.
49 y/o male dx 11/2017 crc
Stage 4 with 17 liver Mets, cea 490
RAS, BRAF WT
12 rounds folfox , avastin / oxi
5/18 cea 2.8 liver resection and pve
7/18 part 2 liver resection, remove right side of liver
Surgical site mrsa infection, wound vac
8/18 cea .9 cCR, rectal tumor is gone
Rectal surgery postponed, watch and wait
10/18 clear scan CEA .7

KimT
Posts: 608
Joined: Sat Feb 20, 2010 8:53 pm

Re: Maybe a problem ...

Postby KimT » Sun Nov 04, 2018 1:19 pm

martd wrote:You're complaining about doing paperwork? There are people on this forum fighting for their lives and you want them to figure out your medical insurance problems because you detest paperwork? You received alot of excellent advise here now all you have to do is put in a little effort and apply it. You may feel it's not possible but it definitely is.


I would have to agree. This is a board of cancer survivors and loved ones of survivors. Asking us to figure out your insurance troubles for you is in poor taste. I truly don’t mind questions from people who have not been diagnosed with cancer but have some sensitivity. Cancer is not a good time. People are sick and some are terminal. Would you walk up to someone sitting in a chemo chair with an attitude and ask them to figure out how you can get insurance?

Everyone of us has dealt with more paperwork than we would like. It is what it is. Start with your county Medicaid program. A phone number or website should be easily found via an online search. Otherwise we really cannot help you. You need to address your concerns with a doctor, which we are not. Best of luck to you.
2/10 dx colon cancer
right hemicolectomy 3/19/10
Stage 2a 0/43 nodes
Lynch syndrome
3/14/10 colon resection/ removal of metal clips
Nov 11 dx ovarian cancer

Lee
Posts: 5723
Joined: Sun Apr 16, 2006 4:09 pm

Re: Maybe a problem ...

Postby Lee » Sun Nov 04, 2018 4:13 pm

I'm sorry you have such a negative view of doctors (and maybe life in general). Personally, my doctors SAVED my life. This includes my primary doctor who referred me to a GI doctor who found my tumor. I appreciated the extra mile my surgeon took with me, prior to my surgery and all my follow up care. And my Onc who gave me my first hug since being diagnosed and telling me it's going to be okay. These doctors showed compassion towards me when I was scared for my life.

I admit I have ran into a few doctors who I did not like. Generally that was it and I moved on to a new doctor. My primary who I've had for almost 30 yrs now was not the first I saw when we moved to Arizona. The first doctor I saw when we moved here was not a good match, I never went back. Shoot, I had a cat that did not like her 1st vet, recommend by a friend. I got her a new vet and you could tell she was a lot happier. Eventually my friend moved her pets to my vet.

Look we can not make a diagnoses over the internet, that speculation. Only seeing a doctor and doing a physical exam and probably a few tests can you get a true diagnoses if anything is going on. "IF" you have cancer, the best way to deal with it is surgery, chemo and possibility radiation. I knew 2 people who thought they could cure their cancer with supplements and diet only. Sorry to say they are both dead today. One was a stage I (which has about a 90% survival rate) she died a stage IV several years later. And you can always try "snake oil" butt I guarantee it won't help.

Best advice I can give you, check out Obama Care or Medicaid. As far as paperwork, sorry, butt "suck it up buttercup!!" Just do it!! Find some kind of medical insurance then GET THAT COLONOSCOPY. At 52, you need to get it done as a preventive measure. It is a lot easier to remove a polyps than a cancerous tumor.

Good luck, please keep us posted.

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!

deaconblues
Posts: 5
Joined: Sat Nov 03, 2018 8:14 am

Re: Maybe a problem ...

Postby deaconblues » Sun Nov 04, 2018 5:27 pm

Lee wrote:I'm sorry you have such a negative view of doctors (and maybe life in general). Personally, my doctors SAVED my life. This includes my primary doctor who referred me to a GI doctor who found my tumor. I appreciated the extra mile my surgeon took with me, prior to my surgery and all my follow up care. And my Onc who gave me my first hug since being diagnosed and telling me it's going to be okay. These doctors showed compassion towards me when I was scared for my life.

That is great! It's true I have had some bad doctors and often had to 'help' them deal with my issue. I go back and forth between thinking I am asking for too much and too little.

Lee wrote:I admit I have ran into a few doctors who I did not like. Generally that was it and I moved on to a new doctor. My primary who I've had for almost 30 yrs now was not the first I saw when we moved to Arizona. The first doctor I saw when we moved here was not a good match, I never went back. Shoot, I had a cat that did not like her 1st vet, recommend by a friend. I got her a new vet and you could tell she was a lot happier. Eventually my friend moved her pets to my vet.

Yes, I have done the same thing, many times. I will say I find the good ones to be rare. You know where you go in and the doctor takes time to listen and seems genuinely concerned and also very up to speed on the issue.

Lee wrote:Look we can not make a diagnoses over the internet, that speculation. Only seeing a doctor and doing a physical exam and probably a few tests can you get a true diagnoses if anything is going on. "IF" you have cancer, the best way to deal with it is surgery, chemo and possibility radiation. I knew 2 people who thought they could cure their cancer with supplements and diet only. Sorry to say they are both dead today. One was a stage I (which has about a 90% survival rate) she died a stage IV several years later. And you can always try "snake oil" butt I guarantee it won't help.

Yeah, I am more of a realist about such things, but it never hurts to ask.

It would be interesting to know things like typical polyp or rectal cancer growth rates. For instance my ridge lump has indeed been there for almost 10 years. It is not huge, but like ... more. At that rate I could see it not necessarily being an issue. But of course it's all just ridiculous conjecture until I get the work done.

Lee wrote:Best advice I can give you, check out Obama Care or Medicaid. As far as paperwork, sorry, butt "suck it up buttercup!!" Just do it!! Find some kind of medical insurance then GET THAT COLONOSCOPY. At 52, you need to get it done as a preventive measure. It is a lot easier to remove a polyps than a cancerous tumor.

OK, so you do recommend insurance first as opposed to going in and doing the what do I do at the doctor's office? I though Medicaid was a standing thing that was a fallback that you did not have to 'apply' for. You're right, I will have to suck it up and check.

Lee wrote:Good luck, please keep us posted.

I will. Maybe I will be lucky and its just some benign lumps.

Thanks for your responses.

Lee
Posts: 5723
Joined: Sun Apr 16, 2006 4:09 pm

Re: Maybe a problem ...

Postby Lee » Sun Nov 04, 2018 7:21 pm

deaconblues wrote: . . .
Lee wrote:If you are concerned, find another GI doc, many will cut the cost if you pay cash for there services.

That I can do. I am just afraid that once the diagnosis is on the books, I will have trouble should I get employment in the future. When my father passes, I will be essentially homeless.

Thank you.


Again I am NOT an MD just someone who has lived with this for coming up on 15 yrs. so this is my very humble opinion. I don't think what you described is cancer, I could be wrong, butt I don't think so. What it could be I don't know!!!

As I stated in my previous post, a friend diagnosed with stage I colon cancer chose no treatment. 10-12 yrs later she's in the ER with 100% blockage due to her cancerous tumor. And in A LOT of pain (10). Like you, she didn't believe in doctors either until the pain become more than she could tolerate. And it didn't happen overnight, she suffered for some time. She was also skin and bones at that point as she had lost so much weight. Emergency surgery was done to give her a colostomy. Butt she passed a few months after that surgery, cancer was all over body.

Does any of what I just described apply to you??

Seen any changes in your stools??

Get medical insurance, find a primary care physician, let this PCP see what you are SO concerned about. If s/he can not diagnose the situation, you will be referred to someone who can. Self diagnose is like the blind leading the the blind. Let a medically train person give you a true diagnoses. Anything else is just a speculation.

I've had several friends in hospice, I hope your father is pain free, surrounded by family friends and love,

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!

deaconblues
Posts: 5
Joined: Sat Nov 03, 2018 8:14 am

Re: Maybe a problem ...

Postby deaconblues » Wed Nov 14, 2018 9:14 am

I had no symptoms years ago when I first felt this bump and none now when I feel a larger set of 2-3 bumps.

Here is a sober question: If it is 2-3 bumps, that means it has metastasized right?
Another question that the community may struggle with: Is any tumor not cancer? I mean they all are really, right? Just some are growing at an 'acceptable' rate. That sounds deceptive to me.
Another observation: When I touch the bump, and I noticed this before so many years ago, my whole area down there is sensitive for almost a day. Is that normal and have people heard of that? Like its flush with heat and feels off and it can be hard to be comfortable sitting. I DID NOT touch myself hard or rough in any way and of course my hands were clean.

I have come across the fasting issue.

I have already done a 12 hours dry fast test and a 24 hour dry fast test. They were so easy I wonder if maybe I can reduce the cancer that way with less invasiveness. I have heard as well that even a biopsy can metastasize the cancer. That combined with the unknowns of money and bureaucracy make me inclined to try for a month or so and see if I can reduce the bumps.

Opinions?

User avatar
peanut_8
Posts: 2287
Joined: Sun May 25, 2014 1:31 pm
Location: Capital of Texas

Re: Maybe a problem ...

Postby peanut_8 » Wed Nov 14, 2018 11:17 am

My opinion is that you need a colonoscopy. You've had a couple weeks to work on that, have you made any progress?
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


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