More tests?? Uggghhhh

[natashav2003]

I guess I just need to vent, I apologize if thats frowned upon but I must. Im PISSED! Im tired of being scared, its exhausting. I naturally am very anxious and fearful so this ordeal is taking its toll on me and my family. About a year ago I was diagnosed with a borderline enlarged spleen after from abdominal pain, confirmed by ultrasound and CT. Doctor didn't seem concerned at all and nothing was ever done. Two months ago I go in for my yearly check up and mention that my spleen is still bothering me, get another ultrasound and this time its considered enlarged14.1 cm I believe up from 13.4 last year. Now all of a sudden my doc is concerned and wants all these tests, blood smears, etc...lots of stuff that look for cancer. After a week wait for Mayo results she calls and says they look encouraging and do not suggest cancer like lymphoma or Leukemia but wants me to see a hematologist/oncologist just to see if there is anything to look at. Instantly my panic comes back. WHY, if she says it doesn't suggest cancer then why?? SO I have a follow up appointment Tuesday and he again tells me that she no longer suspects cancer, she just wants a specialist who deals with blood and spleens regularly, to take a look. Once again I feel at ease, I can smile again. Fast forward to this morning....I see the dreaded cancer doctor who is conveniently located IN the cancer center. Oh hello nerves...youre back again I see. After roughly an hour of waiting I see her for maybe 10 minutes if im lucky at which time she tells me that my blood work looks good, red, white, platelets etc but that really doesn't mean much and I will need a CT scan, bone scan, marrow biopsy etc etc. WHAAAT? So I say "hey, my doc said cancer was no longer suspected, my cells in the smear looked normal, why are you going right back to cancer"??? No real answer was given to me, just told that my blood tests don't signal any bone marrow involvement, lymphoma is a treatable disease, and we will call you when we get the scan appointments made. Now why in the hell would she be talking about lymphoma and bone marrow involvement etc if she WASNT suspecting cancer? Im sick, literally sick over this. Yes, im well aware that there are others already dealing with diagnosis and treatments etc but the not knowing, the tests, the waiting....its terrifying. PLEASE...anybody...thoughts? Stories, experiences...im begging..as I sit and look at my 9 and 3 year old playing....what is happening to me :'(

[natashav2003]

Well she still wants CT scans with drinking some stuff, bone scans with dye...why? I mean if I have a positive ANA result and need to see a new doctor...why in the hell is she still pursuing the cancer crap unless she thinks its there and is lying to me??? im really pissed at this point, I get a sigh of relief then smacked right back down to Lymphoma land. I don't deal with stress well....can ya tell? ;) lol. The ovarian cyst I had a few years ago is gone along with one of my ovaries.

[Ken_PA]

You can look at it this way: the odds of lymphoma are low, but that still needs to be investigated and ruled out. Hopefully, you'll have your CT with barium done soon and then you'll be somewhat more at ease.

[Ken_PA]

Don't bother digging up that report, then, since you know it contains nothing suspicious.

Here is a paper on unexplained but benign cases:
http://onlinelibrary.wiley.com/doi/10.1111/j.1600-0609.1986.tb02318.x/abstract

"We consider that these patients have [moderate] splenomegaly which is not of a specific nature, but may be associated with a severe antigeneic response to the previous cytomegalovirus infection. In view of the otherwise negative findings these patients should be considered to have ‘True Idiopathic Splenomegaly’, a term which would indicate the benign nature of the splenic enlargement. This diagnosis should be considered in the differential diagnosis of asymptomatic patients who have splenomegaly of undetermined origin."

That could apply with you having something similar but not identical, especially if you have Hx or Fx of overactive immune system. It's something to be hopeful about.

[Ken_PA]

So that's opposite of that other paper you'd seen posted, in which almost all of unexplained cases turned out to be lymphoma.

[natashav2003]

I will see if I can get that report but my doc told me the spleen was normal in shape, no fatty deposits, just enlarged. Liver was normal shape, slightly enlarged, with fatty infultrations. Sorry thata all I know for now

[Ken_PA]

Okay, so we can forget about Gaucher's.

Can you post the report of the spleen sonogram?

[Ken_PA]

Okay, we can forget about Gaucher's.

Fatty liver is listed as a common cause of splenomegaly.
http://www.emedicinehealth.com/enlarged_spleen_splenomegaly/page2_em.htm
Intermittent fasting can reduce fatty liver.
Can you post the report of the spleen sonogram? Maybe it hints at fatty spleen or else backup of blood from liver into spleen.

[natashav2003]

Obese, yes.

[Ken_PA]

Do you have any of the risk factors for fatty liver? (heavy alcohol, heavy fructose or fat consumption, being very overweight?)

If not. then there is the possibility of a rare storage disorder such as Gaucher's Disease.

"I don't understand how there is no sense of urgency."
Yes there would be urgency if they thought you had cancer.

"once a week or so I get an all over itch"
Lymphoma can do that, but so can immune dysfunction. Histamine makes skin itch.

[natashav2003]

Just very frustrating and scary....

[natashav2003]

Yes, I was tested for blood viruses, hepatitis, mono etc, all negative. Blood tests showed some inflammation but don't know where its coming from. My primary doc said it was possible my fatty liver could be causing the spleen to enlarge also but I am just not buying it at this time. The oncologist said that cancer is not the "likely" diagnosis but her steadfast approach to proving it was with all these new tests leads me to think otherwise lol. I don't understand how there is no sense of urgency. Reading others experiences and it all seems to be a horrible waiting game when you don't have visible, accessible swollen nodes. The only other symptom I am having is itching, not constant but maybe once a week or so I get an all over itch. I feel like my gut is telling me I have it.....im no more special than anybody else, I guess ive been chosen.

[Ken_PA]

Hi, no need to apologize at all.
There is a principle in diagnosing that a doctor has to rule out a possible cause, no matter how unlikely, if missing it would be catastrophic. So you can look at the coming tests as being able to help to rule out cancer. Lots of people want every test possible, some don't get all tests possible.

Also, in a mystery case like yours, not all doctors do exactly the same things anyway.

Are you aware of the various reasons, some not-cancer, why a spleen might be enlarged?

[natashav2003]

Hi Ken, you've been so kind to respond o my post that I figured I would give you an update. The hematologist/oncologist just called and said they are referring me to a rheumetologist (sp) so not sure what exactly that means but that's all the progress thats been made this far.

[Ken_PA]

So that's good, they're not looking for cancer but will be looking into some mystery immune condition. Unfortunately, such things are known to possibly take a long time to diagnose. But that is  much, much better than having cancer.

Keep me updated. I looked through  your posting and see you have had some ovarian problem. Your current problem might very well be related to that.

[Ken_PA]

Hi, no need to apologize at all.
There is a principle in diagnosing that a doctor has to rule out a possible cause, no matter how unlikely, if missing it would be catastrophic. So you can look at the coming tests as being able to help to rule out cancer. Lots of people want every test possible, some don't get all tests possible.

Also, in a mystery case like yours, not all doctors do exactly the same things anyway.

Are you aware of the various reasons, some not-cancer, why a spleen might be enlarged?