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Bloated Stomach

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Bloated Stomach

Posted by
trish on May 30, 1999 at 00:49:31:

Dr. Stoll, et al,

My mother, 72 years old, has bone cancer and diabetes. She is currently having chemo and seeing a chinese herbalist (though I think she may quit because of the cost), learning about skilled relaxation via tai chi and self hipnosis, and doing some other wellness related stuff.

When we first found out about the cancer, it was due to the fact that she was constipated and had some intestinal discomfort. Starting just about then (november of 98) she started having what she calls a "big belly." Her abdomen is somewhat distended. NO one has been able to address this. Her oncologist has no clue whatever - no surprise- but neither does the herbalist - he said he'd give her something for it, but she gets a multitude of blended pills and teas from him, and there's no way to tell which is for what -he is from China, mom's Costa Rican, I'm sure there's a bit of a communication gap. Her big belly makes her uncomfortable because she can't bend over properly, and self conscious - she's quite petite - 5'1" around 115 lbs.

I'm supposing this is LGS, but I don't quite know how to explain this particular effect.

I told her I'd post here for suggestions - anyone have any clues or ideas?

thanks,
trish



question

Posted by matt on May 30, 1999 at 03:21:03:

In Reply to: Bloated Stomach posted by trish on May 30, 1999 at 00:49:31:

is she on cortisol?



No, she's not on cortisol. NMI

Posted by
trish on May 30, 1999 at 09:06:54:

In Reply to: question posted by matt on May 30, 1999 at 03:21:03:

nmi



Re: Bloated Stomach (MUST determine cause.)

Posted by Walt Stoll on May 31, 1999 at 08:48:46:

In Reply to: Bloated Stomach posted by trish on May 30, 1999 at 00:49:31:

Hi, trish.

Sorry to hear about your mother. Does either of you know the origin of the tumor? Is it primarly bone cancer or is it metastatic to bone?

Has the doc "tapped" the abdomen to get some of the fluid for microscopic analysis in the laboratory? Is this gas or is it fluid? I am sure that he considers her terminal but that does not excuse doing something as simple as finding out why her belly is so big. Perhaps her doc already knows. If so, why do YOU not know? At the very least he could make her more comfortable. A "paracentesis" is such a simple procedure!

Let me know the answers to the above.

Walt



Re: Bloated Stomach (MUST determine cause.)

Posted by
trish on May 31, 1999 at 10:15:54:

In Reply to: Re: Bloated Stomach (MUST determine cause.) posted by Walt Stoll on May 31, 1999 at 08:48:46:

Thanks Walt -

This is metastatic from breast cancer. She had a radical mastectomy around 25 years ago. I asked her if it was gas or not, she says she can't tell. She doesn't "have" gas and in fact says she wishes she did, so maybe it would help get rid of the belly! Doctor says she doesn't know what is causing it, and has basically brushed it off.

What triggered the tests to begin with back in November was a really bad case of constipation with pain in her sides. Her stomach started getting bigger at that point, but the consitpation went away, the cancer was found and attention turned to that.

As far as the cancer itself, it's in the bones and the some liver liver. The second opinion doctor said liver involvement was slight at this point. She's been on chemo for a few months and a recent ultrasound showed the liver lesions were smaller, so we found that hopeful.

She's still pretty much pain free, works out almost every day, goes to a "wellness house" with my dad where they're doing tai chi and going to learn self hypnosis for pain management along with doing support group stuff. She has a great attitude. I guess I still have some hope that maybe the cancer can be held at bay after all...and that she will have a nicer way to die.

If we can make her more comfortable I'd like to pursue that. She's had to alter all her pants, and her underwear is uncomfortably tight around the waist now - not to mention that just bending over is a problem!

So, what is a paracentesis, and what helpful information would it render? I'm very gratefully listening to any and all ideas and suggestions here.

Thank you as always for your help. Sorry this got so long...

trish



Addendum (as if that wasn't long enough!)

Posted by
trish on May 31, 1999 at 13:33:20:

In Reply to: Re: Bloated Stomach (MUST determine cause.) posted by trish on May 31, 1999 at 10:15:54:

Walt,

This might be significant- she's had a number of tests performed and there is no detectable blockage or mechanical problems of her intestines. And, this just in from mom- they had trouble seeing her pancreas on one test because it was obscured by what they thought was gas.

She is amazed at your helpfulness and asked me to tell you that she loves you and sends a big fat kiss...
(!)

trish



Re: Addendum (as if that wasn't long enough!) (Something fishy in Denmark?)

Posted by Walt Stoll on June 01, 1999 at 11:20:38:

In Reply to: Addendum (as if that wasn't long enough!) posted by trish on May 31, 1999 at 13:33:20:

Hi, trish.

Tell your mother "kiss received" and thanks.

She not only has metastasis to her liver but to the peritoneum covering all of her abdominal organs. These metastases are producing lots of fluid inside her abdomen.

A paracentesis involves putting a needle into the space in the abdomen, containing all the fluid, and drawing some (or all) of it out. Some needs to be sent to the laboratory for confirmation of the causes of its accumulation. Liver obstruction due to the metastasis to the liver COULD cause this but she would have pain and jaundice if THAT were the case.

Perhaps the docs have decided that your mother doesn't want to know. That CAN be a valid position to take. HOWEVER, there is NO excuse for them not to share what is going on with you ESPECIALLY if your mother tells them to talk frankly to you.

I have yet to see a case in which the docs took it upon themselves to not tell the patient (believing that the patient does not want to know) WITHOUT discussing it with the family. After all, the family knows this person far better than the docs ever will.

This is not a hard diagnosis to make from here. The docs, there, KNOW what is going on so should the rest of the family. The decision of what to tell your mother should be a joint decision including the docs, and the closest family.

Let me know what happens.

Walt



(Something fishy in Denmark?) My next question...

Posted by
trish on June 01, 1999 at 13:58:49:

In Reply to: Re: Addendum (as if that wasn't long enough!) (Something fishy in Denmark?) posted by Walt Stoll on June 01, 1999 at 11:20:38:

Hi again Walt,

It would never occur to any of us to keep anything from Mom. Luckily, we are an open and supportive family, and will deal with the truth together.

You sound pretty sure about this - Do you think that we even need to do a paracentesis? What can be done about it if it IS in fact metastases?

Maybe if the doc doesn't know how to treat this, she feels that it's not worth doing any testing...I don't think she is keeping us in the dark on purpose, because mom has complained about her stomach from the beginning, and was sent for tests to be sure there was no obstructions. Maybe the doc's just playing dumb so she doesn't have to deal with it??? *sigh*

If you think there's something we can do, by finding out exactly why she's bloated, I will certainly pursue this with the doc. I am asking you because mom won't want me to "rock the boat" if we can't do anything to make it better or go away completely.

Thanks again for your support and advice.

trish



Re: (Something fishy in Denmark?) My next question...

Posted by Walt Stoll on June 02, 1999 at 14:25:00:

In Reply to: (Something fishy in Denmark?) My next question... posted by trish on June 01, 1999 at 13:58:49:

Yah! Trish.

Unfortunately, I am pretty sure of this. I wish I was not. Of course, I know only what you have told me so there is no way I can be CERTAIN. The only way would be to tap some of the fluid & have it examined. However, it is the only thing that fits the facts that you told me.

Even the "flat plate" of the abdomen (what they used to look for obstruction) would show that there is lots of fluid in the abdomen. If you even had a copy of that xray report, it would say that. Why do you not have a copy?

I DO think the doc is not doing the paracentesis because then she would have to be straight with at least the family. If she has what I think she has, it is a terminal problem. Injecting anticancer drugs into the abdominal cavity can help for a while but there is NO cure.

Surely the doc has told the family that even the liver metastasis has no cure???!!!

From what you are saying about your family's relationships, at least you deserve to know what can be known. THEN, you decide what to do with the information. If your mother wants to prepare for her passing on, it is a crime to not give her all the facts. She will only go through dying once.

Walt



Walt, of course more questions...

Posted by
trish on June 02, 1999 at 18:44:12:

In Reply to: Re: (Something fishy in Denmark?) My next question... posted by Walt Stoll on June 02, 1999 at 14:25:00:

Yes, the doc told us that the cancer is terminal, but she also said that she's had patients in mom's condition that she's been treating for ten years...that made things seem pretty hopeful. It was really impossible to get answers about our time left...at first it seemed like she'd be gone in a few months...but that was a few months ago. If she can live with this for 10 more years, well...that would really be nice.

As I said, her spirits/attitude are great, she's relatively pain free still, and the liver lesions did shrink in response to the chemo. Naturally, I try to be hopeful that she will be with us for a few more years.

But, you have me worried all over again. It seems to me that you are saying that the abdominal thing is another, separate, terminal problem.

What do you think it is? I will need to know what I'm after if I'm going to ask the doc to treat this...If she just left it out, I'm going to be furious.

My family does want to know what can be known - I've felt very fortunate to know about her condition so far, so we can make the most of our time left together. There are things she wants to address, too, and she has even talked about getting her funeral stuff arranged so we don't have to do it later.

This is really a special time I think - like you said, she will only go through dying once. If we have been misled about the nature of her condition, well, we need to know the truth!

Walt, I am very grateful for your presence here.

trish



of course, a p.s.

Posted by
trish on June 03, 1999 at 01:10:26:

In Reply to: Walt, of course more questions... posted by trish on June 02, 1999 at 18:44:12:

Walt, I talked to my mom tonight and read to her our posts to each other. I suppose she'll be dictating (to me) a letter to you shortly - she is quite impressed with you and very grateful (as I am) for your input.

She pressed the doctor today about this during her chemo appointment. The doc SAYS there's no evidence of fluid in the abdomen. Mom says the doc went through her file at great length. Mom asked her if there was a test we could do to find out what's going on. The doctor said no. Great. So mom asked me, "Well, how can she say that? There's SOMETHING wrong here - I can't even bend over without feeling this belly. How come your doctor (you) knows there's something wrong?" She's 5 feet tall and around 110 lbs., so she's not fat.

After I read our notes to her, she seemed more determined to get to the bottom of this. She's concerned, as I am, that this condition will kill her independently from her other, slow growing problems. Your statement about how it would be a crime not to give her all the info really touched her. She feels very strongly about that.

I'm trying to find a way to thank you ...
trish



Re: Walt, of course more questions... (Archive in cancer.)

Posted by Walt Stoll on June 03, 1999 at 14:21:41:

In Reply to: Walt, of course more questions... posted by trish on June 02, 1999 at 18:44:12:

Hi, trish.

Ask her doc if there is fluid in the abdomen making it large. When she says yes, ask her what is causing it.

If you thnk your mother would like to stay around a lot longer, I would suggest she call the Cancer Control Society for options (323) 663-7810. Call the Kushi Institute and learn about Macrobiotics (413) 623-5741. There are lots of things that can help a lot without any risk. They all take work.

If you think she is willing to do an inpatient evaluation for options (including conventional medicine) she would value a week in one of the Cancer Treatment Centers of America. Have her take all her records (Including xrays & blood tests so they would not have to be repeated.) Call (800) 641-6333 for information.

Collecting knowledge costs nothing. Only she & the family can make these decisions and THEN only with adequate information. For any doctor to make those decisions for the patient & family is the height of arrogance. I hope that is not what is going on here.

Walt



Re: of course, a p.s.

Posted by Walt Stoll on June 03, 1999 at 14:25:12:

In Reply to: of course, a p.s. posted by trish on June 03, 1999 at 01:10:26:

Hi, trish.

I am happy to hear that "there is no fluid in the abdomen". However, that begs the question: WHAT IS CAUSING THE ABDOMINAL ENLARGEMENT? If you will recall, I said once that it could be the liver. However, if THAT is what it is, things are further advanced than you have been told.
Something is causing this.

Walt



Thanks Walt, I'm going straight to the horse's...

Posted by
trish on June 04, 1999 at 10:57:26:

In Reply to: Re: of course, a p.s. posted by Walt Stoll on June 03, 1999 at 14:25:12:

well, I'm not sure WHAT horse's body part... ;-)

I have been getting all this info from mom. Talking to her last night, I realized that she is not completely understanding what the doctor has said, nor what you and I have been trying to relate to her.

I am going to speak directly with the doctor myself. Mom tends to sometimes misunderstand and then doesn't like to keep asking...I will re post new information in a new thread when I find out more.

As always, THANKS!
trish




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