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Old 07-05-2007, 07:56 AM   #1
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My Mom diagnosed with terminal Stage Colon Cancer

I have been reading around this section of the boards in hopes of finding some support for myself, selfishly. Last Aug. my mom was diagnosed with Stage III colon cancer. Surgery was done to remove the tumor in her colon and then we found out that 3 of 14 lymph nodes were involved, so of course was chemo. She took her first dose on 09/25/06. First scan in Nov. Dr. was happy. Tumors shrinking. No more spread. Continued with that (the FOLFOX mix). She got pretty sick and feeling run down. Another scan in Feb. wasn't a good one. No spreading, but tumors weren't shrinking. Decided on another therapy. May CT scans - good enough - some shrinking, nothing getting larger.

Thru the entire process her weight decreased. She went from 186 lb to now about 107. Weight loss was concerning and they decided to not give her a treatment at the end of June and do a CT scan. Got the results this Monday.

Basically, we were told it's terminal. Apparently the tumors have grown in size (although still didn't spread) and ultimately, either do a clinical study (if there's even any available) or take the less than 3% chance of survival with the Erbitux, but essentially...go home, take pain meds and get comfortable and wait. They've arranged for hospice to come out now, while she's still "well," and meet with her for the future. I can't believe we were sitting there having that conversation.

I am in shock. I am an only child and my mom is more than my mom - she's my best friend, my everything. I am falling apart. I suffer constant headaches, nothing matters anymore and I don't know what to do.

Accept that this is truly the end and anything that could have been tried was? Get a 2nd opinion? I don't know.

Any stories/experience anyone would care to share would be so helpful to me. This seems like a very supportive and honest community and I can't get enough of either right now.

Thank you.

 
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Old 07-05-2007, 08:29 AM   #2
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Re: My Mom diagnosed with terminal Stage Colon Cancer

Pittsburgh,
wow. I'm so sorry to read your story. I am trying to think of what to suggest.
If she had surgery to remove the tumor, I guess I'm puzzled. were there more tumors that were inoperable? I'm thinking stage 3 with 3 nodes involved usually isn't considered terminal. My hubby has stage 3 with 12 nodes involved and just started chemo. I would get a second opinion to start with and maybe look into what clinical trials are available.

I am so sorry for what you are going through. Life is so hard and sad sometimes. Try to make the most of each day with her. take care.

 
Old 07-05-2007, 08:56 AM   #3
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Re: My Mom diagnosed with terminal Stage Colon Cancer

Thank you so much for your reply.

I think what has me blown away is the doctor just seems so...hopeless. The tumors have not spread. No other organs are involved...lymph nodes are. Other than weight loss, all her other vitals are top-notch. So basically after only 2 different rounds of treatments, we're done here? That's it? When I spoke with him before she started taking this "second line" of treatment (or whatever they call it) he said that if this didn't work, he had something else in mind...now, it's "Well, we'll try the Erbitux, but you have less than a 3% chance on it. So it's that or a clinical trial." I asked outside of those 2 things, are we at the end of the road for potential treatments and he told me flat-out yes.

I am still in shock/denial, to say the least.

 
Old 07-05-2007, 09:35 AM   #4
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Re: My Mom diagnosed with terminal Stage Colon Cancer

Pittsburgh, get a second opinion. My ex had lung cancer and went through the same thing, removed his lung, chemo and radiation. The second time it came back the doc said it was terminal and gave him 3 months.

After the initial shock, we got a second opinion and some treatment that let him live for another 2 years. I am not saying this will be the case with your mom, because of course I can't know that, but do see another cancer specialist..at least then you will know you have done everything possible

Good luck and God bless.

 
Old 07-05-2007, 10:12 AM   #5
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Re: My Mom diagnosed with terminal Stage Colon Cancer

I agree get a second opinion. My husband was dx July 2003 with Stage 111C (11 out of 18 lymph nodes involved) Surgery took out the rectal cancer and the nodes. I am still a little puzzled as to whether the tumours you mention are the lymph nodes. I would not give up yet at all. I know everyone is different and there are no guarantees but it seems to me they are giving up too quickly. I can imagine how upset and worried you are...do look after yourself too. Keep us posted.
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Old 07-05-2007, 12:09 PM   #6
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Re: My Mom diagnosed with terminal Stage Colon Cancer

Thank you again to all of you who took the time to share your stories and opinions.

And shame on me for not knowing the full extent of her situation. After giving it much thought – as well as reading other people’s experiences with their doctors – that says to me that we are seeing the wrong doctor if I don’t know every thing there is to know about her condition and what EXACTLY is what. I don’t know all the right questions to ask, but to me, the right doctor would tell me everything I need to know.

Thanks to the opinions here that enforced my own opinion of a second opinion; my mom has an appointment on Monday afternoon at 2. If this is what’s meant to be then we can accept it, but only after having more than one person render that opinion. It would be a disservice to my mom to just let one person give their opinion of her fate. We’re not un-realistic, but by the same token, we deserve peace of mind and knowing that we at least pursued another opinion and potential treatment if at all available.

Just knowing that we’re trying to do what we can to be as informed as possible is a refreshing ray of hope.

 
Old 07-05-2007, 01:12 PM   #7
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Re: My Mom diagnosed with terminal Stage Colon Cancer

I am glad you are getting a second opinion. Don't feel bad that you don't know everything about your mother's condition....some doctors seem to feel that patients and caregivers don't need to know too much! Getting a second opinion will at least assure you that you have done everything you can.
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Husband dx July 2003, advanced rectal cancer stage 111C; myself dx July 2006 indolent lymphoma; husband dx February 2010, stage 2 prostate cancer.

 
Old 07-05-2007, 02:57 PM   #8
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Re: My Mom diagnosed with terminal Stage Colon Cancer

I hope your second opinion is with a major cancer center such as MD Anderson or Memorial Sloan Kettering for example.
It is important that her case be reviewed by a treatment team that includes a radiologist, oncological surgeon as well as an oncologist. Liver mets may be removable through surgery or by sir-spheres or radio-frequency ablation or chemo embolization. The same applies to lung mets. Don't look at old statistics. There are treatments in use today that didn't exist five years ago and are not yet reflected in the 5 year statistical figures. Make sure you bring all her scans, test reports, lab and pathology results to the meeting. If necessary, get a third opinion. It is also possible to have her case reviewed by forwarding these things to a major cancer center for review without actually going there.

Where is your mother's tumor?
Did she have it surgically removed prior to treatment?
Is it colon or rectal cancer?
Well, moderately or poorly differentiated?
Has it spread to distant lymph nodes or is it just in the regional nodes (Stage III includes spread to regional nodes and is curable with surgery and chemo in the majority of people).
If she has not had surgery are there any other co-existing medical conditions that would prohibit it?

Good luck and don't be afraid to ask questions and have explanations repeated if you don't fully understand them. Not every oncologist is knowledgeable about every cutting edge treatment out there. You have to do research on-line through discussion groups like this one, or the colon listserv, or colon club, where there is a large amount of relevant up-to the minute information to be shared.

Leslie

Last edited by LESLIETOO; 07-05-2007 at 03:03 PM.

 
Old 07-05-2007, 03:07 PM   #9
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Re: My Mom diagnosed with terminal Stage Colon Cancer

Good for you on setting up an appointment with a different doctor! You know what I learned from going through all of that with my ex? Doctors are not 'all knowing gods in white coats." I am now no longer worried about speaking to a doctor and 'wasting their time' asking tons of questions and moving on to a second or third if I'm not satisfied.

You are your mothers advocate and you have a right to demand answers and knowledge of available treatment...keep us posted!

Oh, and definitely write down all the questions you have and take the list with you, or you will forget half of them

Last edited by Xant; 07-05-2007 at 03:08 PM.

 
Old 07-05-2007, 08:59 PM   #10
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Re: My Mom diagnosed with terminal Stage Colon Cancer

Hey Pittsburgh. I understand what you're going through- my dad was diagnosed with Stage IV terminal colon cancer, was told he has less than 6 months left. he is responding to chemo so far, though.

i agree with everyone who has said to get a second opinion. we have a friend who is a doc at sloan kettering, and he said that our chances of getting accepted are slim because they don't take cases which will worsen their mortality rates. what we did is ask our gastro specialist who he would go to if he had cancer, and we got a great doctor who is close by.

just don't give up! keep looking to find another option. keep asking about clinical trials (that's what we did and we got in a great one). i'll be praying for you. i know what it's like to fear losing your best friend.

 
Old 07-06-2007, 08:45 AM   #11
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Re: My Mom diagnosed with terminal Stage Colon Cancer

Leslie:

Thank you SO VERY MUCH for your very thoughtful and detailed response – I can’t begin to express how much I appreciate it. I’m going to answer your questions below.

Quote:
Originally Posted by LESLIETOO View Post
I hope your second opinion is with a major cancer center such as MD Anderson or Memorial Sloan Kettering for example.
For my mom, an even bigger concern over cancer is $$. Her local supplemental insurance (she is on Medicare currently) does not cover outside the network, and there is no amount of talking I can do to get her to budge in terms of putting her health before her financial outlook. (Insurance can be another depressing rant altogether.) So right now, a second opinion will have to be local, by a well-referred doctor who treated 2 very good friends of mine successfully.

Quote:
Originally Posted by LESLIETOO View Post
It is also possible to have her case reviewed by forwarding these things to a major cancer center for review without actually going there.
I want to work on trying to get her supplemental insurance switched to a PPO that would be accepted at other hospitals nationwide. It’s my ultimate goal to get her to one of the cancer treatment centers.

Quote:
Originally Posted by LESLIETOO View Post
Where is your mother's tumor?
It was in her colon.
Quote:
Originally Posted by LESLIETOO View Post
Did she have it surgically removed prior to treatment?
Yes.
Quote:
Originally Posted by LESLIETOO View Post
Is it colon or rectal cancer?
Colon.
Quote:
Originally Posted by LESLIETOO View Post
Well, moderately or poorly differentiated?
Not sure what your question means.
Quote:
Originally Posted by LESLIETOO View Post
Has it spread to distant lymph nodes or is it just in the regional nodes (Stage III includes spread to regional nodes and is curable with surgery and chemo in the majority of people).
That’s just it. Right there. It is, from what I understand, in the lymph nodes ONLY. NO OTHER ORGANS HAVE BEEN AFFECTED, which is why I can’t understand why this current doctor seems to be giving up so easily…???
Quote:
Originally Posted by LESLIETOO View Post
If she has not had surgery are there any other co-existing medical conditions that would prohibit it?
No other previous surgeries or even health problems would stand in the way.

Quote:
Originally Posted by LESLIETOO View Post
Good luck and don't be afraid to ask questions and have explanations repeated if you don't fully understand them. Not every oncologist is knowledgeable about every cutting edge treatment out there. You have to do research on-line through discussion groups like this one, or the colon listserv, or colon club, where there is a large amount of relevant up-to the minute information to be shared.
I have bolded the part that I agree with THE MOST. Having boards like these with people to exchange information with has been a Godsend to me, and I’ve JUST started reaching out to such communities for support/knowledge/experience. They are truly a lifesaver, and I thank God for them. I’m sorry that ANY of us have to be in search of such support, but since we do…I’m so thankful it’s there.

 
Old 07-06-2007, 08:55 AM   #12
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Re: My Mom diagnosed with terminal Stage Colon Cancer

Quote:
Originally Posted by Xant View Post
Good for you on setting up an appointment with a different doctor! You know what I learned from going through all of that with my ex? Doctors are not 'all knowing gods in white coats." I am now no longer worried about speaking to a doctor and 'wasting their time' asking tons of questions and moving on to a second or third if I'm not satisfied.

You are your mothers advocate and you have a right to demand answers and knowledge of available treatment...keep us posted!

Oh, and definitely write down all the questions you have and take the list with you, or you will forget half of them
Thank you.

What I believe is that this doctor just didn’t have the right personality for us. I need a certain “bedside manner” in a case like this, and he just didn’t have it. Even if he was delivering hopeful/good news, he was still a downer. To the point where – I swear it – he was ready to look over at me and say, “And don’t you be surprised to know you have it too and have the same amount of time ahead of you! WE’RE ALL GONNA DIE!!!” I mean really!

If it’s to be I can {try to} accept that. As can she. But for our peace of mind we need to meet with someone we can relate to/talk with and get recommendations and feel comfortable with. There’s nothing we need more than that at a time like this.

Quote:
Originally Posted by jen4relient View Post
Hey Pittsburgh. I understand what you're going through- my dad was diagnosed with Stage IV terminal colon cancer, was told he has less than 6 months left. he is responding to chemo so far, though.
I am sorry to hear that and happy for you in the same breath…is that possible? I am sorry to hear of your dad’s diagnosis, but happy to hear that he is positively responding to the chemo. If enough people do well with what’s available, we may be able to kick this disease’s butt yet!!! Keep me posted.

Quote:
Originally Posted by jen4relient View Post
i agree with everyone who has said to get a second opinion. we have a friend who is a doc at sloan kettering, and he said that our chances of getting accepted are slim because they don't take cases which will worsen their mortality rates.
You know, I’m so green – I would have NEVER thought of that when reading of the success rates of certain hospitals for diseases…but in a way – a sad way – it makes sense.

Quote:
Originally Posted by jen4relient View Post
keep asking about clinical trials (that's what we did and we got in a great one). i'll be praying for you. i know what it's like to fear losing your best friend.
We are waiting to hear about local clinical trials right now and will also ask this other doctor about them as well. I’m not going to have any regrets of what I “should have” done in trying to get a solution.

 
Old 07-06-2007, 10:47 AM   #13
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Re: My Mom diagnosed with terminal Stage Colon Cancer

To clarify:
Well, moderately or poorly differentiated is what the tumor cells look like under the microscope when the specimen is examined by the pathology dept. Well differentiated look most like normal cells and is the least aggressive; whereas poorly differentiated cells have lost most of their normal characteristics and is the most aggressive, rapid growing form. This information should be on the pathology report, as well as whether there was lymph system or blood vessel penetration.

When you refer to lymph nodes - weren't they removed with the tumor? How many were removed and of the removed nodes how many were positive for cancer? Where are these nodes that are showing up as positive on the CAT scans now? Are they in the same region or a more distant location - the CAT report should specify the location of the enlarged nodes, e.g. paraaortic, mesentery, pelvic, etc.

Leslie

 
Old 07-06-2007, 11:41 AM   #14
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Re: My Mom diagnosed with terminal Stage Colon Cancer

Quote:
Originally Posted by LESLIETOO View Post
To clarify:
Well, moderately or poorly differentiated is what the tumor cells look like under the microscope when the specimen is examined by the pathology dept. Well differentiated look most like normal cells and is the least aggressive; whereas poorly differentiated cells have lost most of their normal characteristics and is the most aggressive, rapid growing form. This information should be on the pathology report, as well as whether there was lymph system or blood vessel penetration.

When you refer to lymph nodes - weren't they removed with the tumor? How many were removed and of the removed nodes how many were positive for cancer? Where are these nodes that are showing up as positive on the CAT scans now? Are they in the same region or a more distant location - the CAT report should specify the location of the enlarged nodes, e.g. paraaortic, mesentery, pelvic, etc.

Leslie
Leslie: I don’t know if “speaking” to you is good or bad in my case! After your input, I’m quite ashamed to say that these are NEVER questions I would even THINK to ask. At this point I feel extremely ignorant, but by the same token, I am learning a lot and am prepared with more questions to meet with the next doctor to get a better understanding of exactly WHAT questions I need to ask in order to fully understand my mom’s situation. Thank you.

I do not know what the cells appear to be, i.e. moderate or poor – I will ask. To date, from what I understand, the cancer is strictly in the lymph nodes. The original tumor was in the colon and removed. At the time of testing, 3 out of 14 nodes were affected; therefore, chemo was a must. Also, they stated there were undetermined cells near the pancreas, although they didn’t label them cancerous at the time. I believe it is that cluster that has now enlarged.

I intend to ask very specific questions on Monday. Exactly WHERE. HOW MUCH. Get confirmation that no organs are affected in addition to the lymph nodes.

SHAME shame SHAME ON ME for not asking more questions from go. I am ashamed that I am so clueless about all of this. I’m sure just armed with the knowledge of the severity would help clear up all my confusion. I’m really upset with myself for allowing someone else to feed me information – I should have been diligently seeking it from them.

 
Old 07-06-2007, 12:18 PM   #15
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Re: My Mom diagnosed with terminal Stage Colon Cancer

Pitts, don't be so hard on yourself. You couldn't know what questions to ask and also, (I'm sure like most of us), when you haven't dealt with something like this before you tend to accept what the doctor says, because they SHOULD be right and they SHOULD be telling you everything that is relevant. It does sometimes take a while for sixth sense to kick in and for you to question what you are, or are not, being told by the doc.

 
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