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Got my ultrasound results- update- got written report

lisa42's picture
lisa42
Posts: 3663
Joined: Jul 2008

I had an abdominal ultrasound and got the results yesterday. The reason I had the ultrasound was because I have had a hard mass that protrudes out from right under where my scar from my liver resection is. I've been wondering is it a tumor, hernia, scar tissue (as my onc thought), or even a swollen part of my liver due to a possible clogged bile duct (as my naturopathic dr thought). I haven't seen the report, my onc's nurse just told me over the phone. She said it said "no mass found". My first reaction was "What?! I can see it just by looking and I can certainly feel it!". She went on to read to me, "multiple liver metastasis seen. ". well, duh, I already knew that! No sizes given. So it really did t tell me much. Except maybe that it's actually my liver, swollen with tumors. Or that it's my liver, swollen with back up. Does anyone have any suggestions? Oh I do get pain there sometimes after meals and I've thrown up once a day for the past 3 days in a row. If nothing definitive showed on the ultrasound and nothing mentioned on CT in Dec (and I had this then too), how can they ever tell what it is? I'm worried that it's a digestive problem in my liver. How can I find out?

Update at bottom- got the ultrasound written report in the mail yesterday-

Brenda Bricco's picture
Brenda Bricco
Posts: 551
Joined: Aug 2011

I don't have a clue Lisa but just wanted to say that I am thinking and praying for you.
God bless you.
Brenda

Brenda Bricco's picture
Brenda Bricco
Posts: 551
Joined: Aug 2011

I don't have a clue Lisa but just wanted to say that I am thinking and praying for you.
God bless you.
Brenda

Sundanceh's picture
Sundanceh
Posts: 4297
Joined: Jun 2009

Wow, it certainly does sound like something is backed up somewhere doesn't it? I mean from the fact that you are beginning to throw up once a day...it leads one to think about that possibility, which you have.

How do they find out? Since there are tumors in your liver, I know surgery has always been ruled out for you...I'm assuming even some type of exploratory surgery would be too...like if they could visually inspect the area for blockage or partial obstruction or something....and if it were found, could they insert a stent?

What worries me is if you're throwing up now, once a day...will this situation intensify to where you're throwing up multiple times of day...or at least after meals.

When things get kinked, we begin to start throwing up bile...when I got out of my rectal resection, I had barely gotten home a day or so and started throwing up like that....it got to where I could not take a pill or even a sip of water...and I was throwing the bile up.....it's got a unique flavor and color to it....I went to the ER and they scanned me and found that my "new bowel" had twisted and kinked....the hope was for it to unkink, or surgically they were going to have to go back in.

Perhaps with the liver, it is similar to that.

Perhaps, it would be a good idea to get a referral or if you can go independently, you could consult a Liver Specialist or Liver Surgical Oncologist.

I'm sure you want to hear what your regular onc says too.

I so wish you could ask a question...and I could help you.....all I seem to do is flail away...but the liver docs would be a good avenue to pursue...if I think of anything else or find something, I will tell you:)

((Lisa))

-Craig

annalexandria's picture
annalexandria
Posts: 2254
Joined: Oct 2011

if they could go in and look via laparoscopy? That daily throwing up is worrisome. What does your doc think is the next step? Hopefully, they can get this sorted out soon for you-seems like if it's not one thing, it's another, at least for us cancer folks. Take care, Ann

lauragb
Posts: 368
Joined: Aug 2011

I don't know any more than any one else what the issue is with your abdomen but also wonder if you should be checked by a surgeon for a blockage, particularly because of the vomiting and pain after meals. The idea of a digestive specialist sounds like a good one to me. Are you digesting food still or is it mostly coming back as bile? Like Craig, I had the kink after my rectal resection. I vomited bile every 12 hours until the blockage was alleviated with an NG tube. I know your situation is different but vomiting is a sign of obstruction. Another thought, if you keep vomiting, you could have it checked for its content and they might be able to tell something about your digestion. Maybe a CT scan would show changes now, not that you keep wanting to get those but it sounds like you have some progressive changes.

I do hope this problem can be alleviated soon. Wish I could be of more help.
Thinking of you and sending you prayers and light,
Laura

smokeyjoe
Posts: 1428
Joined: Feb 2011

I have no clue....wouldn't they have said if they can see a tumor that is so large that it's protruding out that far??? Suppose you'll have to wait and see what doctor says about this scan. Sorry to hear your throwing up, must be miserable for you. I don't have any answers just wishing you well and hopefully this can be resolved.

tommycat's picture
tommycat
Posts: 790
Joined: Aug 2011

I got my genetic test back, and along with gentically showing I had a two-fold higher chance of of developing CRC than the average Jane, I also showed this modification--below--on my chromosome...and also a two-fold higher chance than the avg. person.
Thinking it might relate to you too--just throwing it out there to bring up with your Dr. since your diagnosis didn't provide any answers.
Thinking of you!

Primary Biliary Cirrhosis

Primary biliary cirrhosis (PBC) is an autoimmune disease in which progressive destruction of the bile ducts leads to buildup of bile fluids in the liver. Bile damages liver cells, resulting in inflammation and scarring that can progress to cirrhosis and liver failure. Although the early stages of PBC do not always result in symptoms, people with PBC commonly experience itching and fatigue. Advanced stages of PBC can cause yellowing of the skin, blotchy skin, and fluid retention in the abdomen and feet. Women are much more likely to be affected than men. Although there is currently no cure for PBC, treatments are available to slow progression, control symptoms, and prevent complications.

sasjourney
Posts: 395
Joined: Jul 2010

Hi Lisa,

I am sorry that you did not get any answers to your problem. You may want to consider a visit to USC and talk to Dr. Genyk (liver surgeon). Maybe he can tell you what is going on. He comes highly recommended.

Praying for relief for you.

Hugs,
Sara

thingy45's picture
thingy45
Posts: 582
Joined: Apr 2011

Hi Lisa,
Just want you to know that you are in my prayers. I hope that you can get some answers to what the problem is.
Hugs, Marjan

Buckwirth's picture
Buckwirth
Posts: 1272
Joined: Jun 2010

Can someone fax or email you the report? Having a hard copy might help,

Blake

geotina's picture
geotina
Posts: 2059
Joined: Oct 2009

Sounds like you got a mixed bag with really no answer. Is you doc any good at returning calls? If so, leave him a message that you are not understanding the results or what all this means. Perhaps they can e-mail you the report itself.

I am sorry this is so confusing for you.

Take care - Tina

tootsie1's picture
tootsie1
Posts: 5006
Joined: Feb 2008

I don't have any idea, but I hope they find out soon!

*hugs*
Gail

karen40's picture
karen40
Posts: 208
Joined: Aug 2011

I'm sorry I don't have any suggestions but I'll be praying that you get some logical answers soon.
Karen

janie1
Posts: 753
Joined: Apr 2011

I'm kinda not liking your onc's nurse (and the onc), but that's your decision.
There are other tests (with contrast) that perhaps could be done, but I hope someone is looking into the next step here, without you having to do everything.
Hoping it can be resolved, and I know all these tests, etc. are exhausting. Thinking about ya.

luvmum
Posts: 457
Joined: Dec 2010

Dear Lisa,

I'm so sorry for your recent situation. I have not been posting here for a while ...

Try not to guess, talk to your onc and ask him/her to explain to you. Even when I showed my mum's report to other medical professionals who are not specialist in oncologist, they cannot fully understand/interpret the report.

I'm thinking of you often and please stay strong and hang in there!
Love Dora

tanstaafl's picture
tanstaafl
Posts: 969
Joined: Oct 2010

Sounds like planning specialized food choices, even predigested, for reduced liver function may be important. Hopefully there's effective therapeutic food support beyond job titles, if needed.

I am reminded that John (snommintj) fought his liver mets to a standstill for over two years on chemistry like milk thistle extract and high dose resveratrol, and physical reduction like RFA etc. Others like Burt Berkson (MDPhD) added more, selenium, lipoic acid, N-acetylcysteine, vitamins K2 and C for liver support. Did they mention ascites as a factor?

lisa42's picture
lisa42
Posts: 3663
Joined: Jul 2008

I did get a copy of the written report from the ultrasound in the mail yesterday afternoon. It was a little more helpful to actually read it myself, but still somewhat vague. It had handwritten on the bottom "no abdominal mass found". Types above, each of the organs in the abdomen were listed with findings listed afterwards. Most just said "normal". After the words biliary web (whatever that means), it said normal with no swelling (so that makes me think there's no swelling and nothing is backed up). I'm getting bloodwork done again tomorrow- so they can check my liver enzymes. When I had it drawn three weeks ago, I was told one of the three liver enzymes was slightly elevated, but nothing to be concerned about. We'll see if anything has changed this time. I did throw up again this morning, but each time, it's always been on an empty stomach. It was yellowish green, which i believe is bile, but I read online that it's normal to throw up bile when you have an empty stomach because that's what's in your stomach along with the gastric juices. Interesting thing it said after "gallbladder"... "normal". I don't have a gallbladder- it was removed during my liver resection!

After "liver", it said "multiple metastasis". That's actually what the CT scan report in Dec. said about my liver, but no actual numbers, sizes, locations, etc. The scan before that one, back in July, identified four places in the liver which were lighting up (that one was a PET/CT scan) and had grown slightly from the prior scan. "Multiple" sounds like a lot more than just four, so I guess that is bad news. I just wish they would make it more clear!

So... and, again, I'm interpreting this myself & know I need to talk to a doctor about it- but, I'm thinking that with "no mass found" and "multiple metastasis" in the liver, that what I'm feeling and seeing sticking out must be my liver, swollen with tumors, or tumors themselves, sticking out of my liver.

My onc has not contacted me & I don't think he has any plans on pursuing anything more. Frustrating, because my HMO will not let me go to anyone else. I could pursue getting a 2nd opinion from another oncologist down at UCSD- they will allow me to go there for a 2nd opinion, but nowhere else. I've already requested to my onc's nurse to see if she can get him to put in a referral for me to go to a radiation oncologist at UCSD. I've asked this before & he's always poo-pooed it as not seeing how it could help. Well, it's no sweat off his back to give me the referral & I want to go and get an rad. onc.'s opinion to see if radiation on any specific tumors in my lungs can give me breathing relief & now I want them to evaluate my liver too. With the word "multiple" in there, they may not consider doing it, but I'm not looking for a cure here, just some relief.

So, that's my latest!

Lisa

Sundanceh's picture
Sundanceh
Posts: 4297
Joined: Jun 2009

That's what I can't stand about HMO's...they dictate completely...that's how I ended up with cancer...well that and me never being sick and knowing nothing medically at that time. I couldn't get a referral to a GI for over 3 years...by that time, well you know the story...

Since the HMO will pay for another opinion - rad onc sounds like a good idea, afterall, you are looking for relife and not cure...and it would seem to me that 'quality of life' should still be an issue for you as a person and as a patient.

And as you said, it doesn't cost him anything, but a second of his time...and it could make a huge difference in your pain and not having to suffer so much. It upsets me that he is treating you like this and I find his callous attitude towards you totally irreprensible.

I'm sad and sorry that you are having to wade through this with all that you've got going on...just not right, not right at all.

Over here hoping that something will be done positively for you and you get that referral and get some relife....you deserve that and so much more:)

Helpless in Dallas
-Craig

herdizziness's picture
herdizziness
Posts: 3402
Joined: Apr 2010

Get that onc to sign your referral for a second opinion, it's no skin off of his back and one of the few things that he can do for you (since he isn't doing that much for you at the moment) so keep pushing, one thing I've noticed is we have to keep after the medical personnel all the time to get what we need.
If you call tomorrow and he still hasn't gotten around to signing a referral, then may I suggest going to his office with another person and stand at the receptionist desk until he does.
Hope you feel better soon, by getting some relief!!!
Winter Marie

Nana b's picture
Nana b
Posts: 2910
Joined: May 2009

I had a ultrasound before I got my diagnosis. They didn't see the lump on my intestine it the mets on the liver. They did say I had a fatty liver. Imagine my surprise 2 months later.

Hope you get some answers soon!

lesvanb's picture
lesvanb
Posts: 908
Joined: May 2008

I'm sure hoping you get some relief and yes, it's awful sometimes how we often have to push our doctors to get what we need. Keep going for the second opinion. Are you getting enough support around you? Someone to take you to UCSD? I so hope so. Please wrap yourself up in my warm cyberhugs ((Lisa))

all the best, Leslie

lisa42's picture
lisa42
Posts: 3663
Joined: Jul 2008

Today I am going in for bloodwork, which will include the CBC plus my CEA and liver enzymes. I've gotten my onc to change from having this done every six weeks now down to every three weeks. Should have those results on Monday afternoon. I am hoping to see my CEA has reduced some or, if it's still going up, that it's not gone up more than a couple of points & that will help me know if this natural treatment I'm doing (my vegan/organic diet & several supplements) plus the natural serum I'm taking from the UK is starting to work or not.

While I'm at the office today, I will definitely press my onc to get going on this referral for me to see a particular radiation oncologist at UCSD. It certainly can't hurt to get his opinion!

Thanks for your support and comments, Everyone! :)

Lisa

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

Hi Lisa: Multiple doesn't necessarily mean a lot. They described my 5 cancerous nodules on the peritoneum as multiple. When I first read that, I panicked! But then I read further and they gave the count. Which is the same as it has always been since diagnosed. That's what you need to find out. They should have a count, size measurements, and locations. And, yup, get another opinion. It is difficult for me to do that here in Ontario as there are really so few GI specialists in London and I've got them all! Go for it.
Cheryl

lauragb
Posts: 368
Joined: Aug 2011

Like everyone else, I say be persistent for that referrral to the radiation oncologist.
It sounds like you are already doing so much, being strong.

Keeping you in the light and sending prayers your way.
Laura

PhillieG's picture
PhillieG
Posts: 4672
Joined: May 2005

I wish that you had some clear answers. You know, when I was first diagnosed I was in an HMO and I remember there being a problem with going to Sloan for a second opinion so I just paid out of pocket myself. It was about $250 but it was money well spent. I found an oncologist who was willing to let Dr K "drive" so to speak. Then I had my check ups at Sloan and treatment at the other facility. Thankfully my insurance changed and I was able to go to Sloan by the time surgery came around.
If you feel there may be someone who can help you out there, would you consider paying out of pocket for the consultation and not let the HMO dictate everything? I know it's not cheap but it could be worth it.

Just my thoughts.
-phil

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

I hope you get the second opinion from ucsd.
Trust your intuition.
I hope your cea is down, along long way.

hugs,
pete

Annabelle41415's picture
Annabelle41415
Posts: 4262
Joined: Feb 2009

You have been through so much and I'm sorry that you are searching for answers but really haven't gotten anything to work with. You should get that second opinion and stress that you need some relief. Hoping that a new doctor will give your better options to work with and a new perspective on how to move forward.

Kim

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