Frustrated...

laurie83833 · June 2010

K it has been a while since I posted, brief history husband diagnosed Stage 11B Sept 2009. 6.5CM tumor found - removed Early September. He was offered adjucant chemo and refused (because his monther who had breast cancer told him that the chemo almost killed her after 2 sessions so she stopped and has not had a reocurrance of cancer in the last 5 years). So he opted not to have Chemo...I can't believe his Mother told him that and I am somewhat angry with her for doing so.

K the only health insurance he has it from the VA - which up until his follow up appointments we thought they were doing just fine. He has only had 2 follow appointments Since the surgery (Sept 2009) and both times the regular Oncologist has not been there so he has not even meet him yet. First time: (Oct. 2009) I guess the regular Oncologist had been in a car accident so they flew in a Onc. from Seattle at that time.. 2nd appointment (June 2010) now the regular Onc. was on vacation thus another Onocolgist was see his patients. So in 9 months after surgery he has had 2 follow up appointments. Both appointments with differnet Onc's.

I feel like I have to tell the Oncologist the specs of my husbands diganosis etc. They fumble through the computer screens and say oh your right etc. Otherwise they draw blood, tell him to eat healthier and take a low does asprin daily and send him home. This last time they did schedule him to have a colonosopy this coming August and then a follow up with Onc. in September.

My concern is his last CEA levels:

Before surgery 5.8 (Sept 2009)
After surgery 3.7 (Oct 2009)
June CEA back up to 5.8 (June 2010)

I called to get the CEA results because they were not back from the lab yet at last weeks Onc. visit and they don't call you with the result.. So when I called and said so it looks like the CEA levals went up is this a reason for concern or what is the next step. The nurse on the phone said let me look at the Dr. notes "says he's scheduled for Colonoscopy in August and follow up with Onc in September" well this was scheduled even before the CEA test came back. So does this mean they could care less about the rising CEA level? They have not scheduled him for a CT scan even though several small mm leisions were seen on his CT scan (Sept 2009) on his liver but were too small to diagnose and recommended follow up was suggested this CT scan was even before surgery. So far nothing has been mentioned about the liver leisions or any follow up or CT's scan or other tests.

I'm just getting frustrated seems like his just a VA vet with a NUMBER and really we don't have a assigned Dr. or Onc that we met so far that knows about his specific specs..

Any suggestions? If we call the VA they really don't have anything to say - just we show a visit scheduled and the Dr. will go over things at that time. So is a year normal for not really doing anything? Does it seem like he is going through the standard normal route? Its not like we have a direct number for a Dr. or even a nurse (even a specific name of an individual for that reason) that we can even directly call up and ask questions to.

Thank you.
Laurie

neon356 · June 2010

My personal opinion is that
My personal opinion is that he's not getting anything close to proper care from the VA.
I'd recommend that you contact your congressman, and US senator as soon as possible and tell them what's going on. They may be able to give the VA a kick in the pants. It's terrible how our vets are taken care of and you should raise holy H*ll about it anywhere you can, including Mr Obama who promised to take care of this problem.(Not that all politicians don't make the same promise but it's up to us to make them keep it).Wish I could offer more. Maybe someone else here has other suggestions.
Carl

Unknown · June 2010

neon356 said:
My personal opinion is that
My personal opinion is that he's not getting anything close to proper care from the VA.
I'd recommend that you contact your congressman, and US senator as soon as possible and tell them what's going on. They may be able to give the VA a kick in the pants. It's terrible how our vets are taken care of and you should raise holy H*ll about it anywhere you can, including Mr Obama who promised to take care of this problem.(Not that all politicians don't make the same promise but it's up to us to make them keep it).Wish I could offer more. Maybe someone else here has other suggestions.
Carl

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laurie83833 · June 2010

unknown said:
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Is he the only one who never received Chemo?
I know there has been many that opt'ed out of adjacent Chemo in Stage II even ones from this board and many that I have spoken to, when it was only offered as optional - the Onc even said is fine since it was stage II and he didn't blame him for not doing it as it was only optional and they could not guarantee in his stage of stage II if it would even help anything bu they had to offer it as optional.

K I understand that lab and follow up's all all he gets then, but what about CT scans, when he first went to the first Onc they said if his CEA rose then they would schedule a CT scan and maybe a PET scan. Well with not even having a dedicated Onc he see's who makes the decision about a CT scan? The CEA results never even come back until a week after he his Onc's appointment. Do we call and suggest it.. or just wait until they get around to doing it?

So I am to understand patients with stage 1 and stage II that don't require or opt for treatments, just get sent on there merry way? I guess would not feel so frustrated if we actually after 9 months have atleast spoken to the Onc he was supposedly assigned to we have not (not even once) don't even know what he looks like.

The Second Onc - He told me the CEA was never drawn before surgery I had to tell him yes it was.. I stated that I ordered copies of all his medical records and it does state it was he fumbled through the computer screens and said oh I guess your right. I asked about the tumor and said it was a aggressive kind he said it is? Let me look k yes it is one of the more aggressive kinds.

I will talk to my husband and see if we can get an actual appointment with the ONC that is suppose to be assigned to my husband atlesat if not for anything more then to say we atleast met him and to voice our concerns.

Laurie

msccolon · June 2010

"rising" CEA
You really don't know yet even if his CEA is indicative of recurrent cancer or not; it's not a good indicator for many people. And 2 points really isn't enough to specifically state it's "rising"! Many things can affect the CEA and it's not always even a good marker. For some people, they have active disease and still have a low CEA. If it continues to rise, you might have something to worry about, but not right now. I also have to agree with the others that mentioned that since your husband has refused chemotherapy, it sounds like his followup labs are standard. There's been a lot of discussion of CTs and what is too much, seeing as it's added radiation which may cause grief down the road.

It's got to really suck not being able to have a person to call when you have questions, and I'm not sure how you would resolve that; it's kind of the nature of the beast when in the VA and/or military medicine. People just don't stick around when the private sector pays so much more! They have your husband's chart, and that should help with his continuity of care. We all have to be our own advocates and remember that our medical team is just that, a part of our team in treating our disease. See if you can't get an appointment for consultation, even if it means telling them you want to discuss options you had previously considered unnecessary, maybe that might get him in earlier than August?! Keep advocating and keep insisting somebody pay attention!
mary

sheri22 · June 2010

All chemo is different as all cancers
Laurie

You and your husband need to talk to onc more about chemo. I had stage II 4
years ago and did chemo for 8 months the chemo made me a little tired and a little queezy. But was able to live a normal life and work full time with the stage II colon cancer
This is nothing to mess around with stay aggressive with the oncs and good luck

Sheri22

dianetavegia · June 2010

Laurie
The survival stats for Stage II are worse than Stage III because of people not having chemo and proper follow up care.

I was Stage IIIb and had a CT 8 months after chemo ended. My next CT is April 2011, a year! CEA tests every 6 months.

I wish your husband had agreed to have chemo...

PhillieG · June 2010

Hard to cure stubbornness
It's too bad that he is listening to his Mother on this. Just because SHE had a bad experience does not mean that he will. It's frustrating when people do that. The least he can do is to try it or seek out some other form of treatment instead of leaving the outcome to chance.

I would think that the VA has some doctors that are more specialized with dealing with colon cancer too. Or possibly of one of the Oncologists he's seen you like better than an other, would it be possible to have appointments ONLY with that one? It seems like a reasonable request. People are either comfortable with someone or not and at times some people just don't care.

As far as his CEA results go, I would push to have him seen/tested sooner than his August appointment. While the CEA isn't always the most accurate test, in your husband's case I would be concerned since his numbers seem to mirror his health. Be persistent with the VA. Even with "regular" insurance, we often have to be our own advocates. There have been a few times when I've had to pester them to get things done to a level that I felt was satisfactory. We can't just leave it in the hands of doctors. You sometimes have to put pressure on people to get what you need.

I wouldn't put too much emphasis on stats concerning recurrence either. It serves little purpose (if any) other than to scare the crap out of someone which is not being helpful at all.

So my advice is to call the VA, tell them about his CEA results and his previous levels and what was going on at the time of his levels (pre-op and post-op). Then do not take no for an answer. I've heard a lot about the VA, much of it negative, but I would think that they do see many cases of cancer (especially colon cancer) and they MUST gave some group within the VA that deals only with this type of cancer.
All the best to you and K Laurie
-phil

John23 · June 2010

Laurie -

A quick comment....

Refusing to do chemo, radiation, or refusing to take -any- suggested
medication, -does not- exclude a patient from further tests, as someone
here has suggested.

I do not take any western medications, and get CT scans, etc as
I feel are needed. Medicare and my supplemental insurance pays
for those tests, regardless. I also have two oncologists, and
a GP, and a colorectal surgeon who is classified as an
Surgical oncologist. All are paid for regardless if I choose
their specific treatment or not.

Lately, there are more and more physicians steering away from
arbitrary chemo and radiation, since the technology does not
give the advantage that it was once thought it had.

Single cancer cells that are not growing at a faster rate than the
surrounding cells, are usually unaffected by the present chemo
technology. But the chemicals used, are carcinogenic, and toxic,
and can cause second, unrelated cancers, or serious neurological
problems,

The practice of attempting to use chemotherapy as an arbitrary
"preventative medicine" is now being deemed as a poor route to go
by many practitioners.

It's difficult to work through the VA system, and I wish I knew
someone that could help you. I did have a friend that used doctors
he chose outside of the VA, and it had been paid for by his
insurance (and medicare, I believe).

You should have second and third opinions, and a better
explanation of the course of treatment available.

But the choice of "not doing chemo", or "doing chemo" isn't the
end or the beginning; Cancer can be fought many ways.

Unknown · June 2010

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laurie83833 · June 2010

Sceduled for CT
I called the ONC's nurses station and asked about a CT scan. And she did confirm that one is scheduled for him in September. They want him to have his colonoscopy before then and in September the CT scan and blood tests and to meet with the ONC.

So I am assuming that they know what they are doing, but I am sure glad I called atleast makes us rest at ease a bit more.

As far as Chemo if it was me I would have done the treatments. I cannot speak for my husband and I WISH his Mother had not said anything to him. REALLY upsets me that she did, but not much I can do about it now. If something shows up on the CT scan at that time my husband may reconsider the Chemo (the pill form since that was offered and the ONC said it was just as good as the intravienous type) if and when we come to that bridge I will try and persuade him into doing so atleast to give it a try he can always stop if it makes him to sick. He is taking looks of vitamins and nutrients immune boosters etc..though so I think that should help some in his fight. I do agree though from what we noticed when we spoke to the two ONC's they really did not push the issue of Chemo and basically said there is not much data saying whether or not it really does as good as they thought in the past but they said they still have to offer it. Which really surprised me considering that is there specialty and they seem to have doubts themselves into it's effectiveness.

Thank you for all the comments, it does make me feel better.

PhillieG · June 2010

laurie83833 said:
Sceduled for CT
I called the ONC's nurses station and asked about a CT scan. And she did confirm that one is scheduled for him in September. They want him to have his colonoscopy before then and in September the CT scan and blood tests and to meet with the ONC.

So I am assuming that they know what they are doing, but I am sure glad I called atleast makes us rest at ease a bit more.

As far as Chemo if it was me I would have done the treatments. I cannot speak for my husband and I WISH his Mother had not said anything to him. REALLY upsets me that she did, but not much I can do about it now. If something shows up on the CT scan at that time my husband may reconsider the Chemo (the pill form since that was offered and the ONC said it was just as good as the intravienous type) if and when we come to that bridge I will try and persuade him into doing so atleast to give it a try he can always stop if it makes him to sick. He is taking looks of vitamins and nutrients immune boosters etc..though so I think that should help some in his fight. I do agree though from what we noticed when we spoke to the two ONC's they really did not push the issue of Chemo and basically said there is not much data saying whether or not it really does as good as they thought in the past but they said they still have to offer it. Which really surprised me considering that is there specialty and they seem to have doubts themselves into it's effectiveness.

Thank you for all the comments, it does make me feel better.

The old saying
"...I am assuming that they know what they are doing..."
Don't assume, it makes an **** out of u and me.
Seriously, don't assume that they always know what they are talking about. Doctors have been wrong in the past. If you're comfortable with what they told you then that's what matters.

Did you explain to them that his CEA went up etc? Just a confirmation of an appointment isn't the best answer they could have provided. I don't mean to second guess you. I wouldn't be very comfortable with that answer but I'm not you. It does sound good that your husband is taking some supplements and looking into doing some things to better his health.

Frustrated...

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