Not knowing is so stressful: My mom might be sick...

[Queen of the WDW Scene]

Thanks for the update. Did they at least rule some things out, like blood cancer?


Big virtual hugs to you and your mom. Not knowing is hard

No they could n ot rule anything out. I'll report back when I know anything else.

 

[The Mystery Machine]

She went to her Dr with some digestive troubles.
They did one test and saw nothing wrong with her digestive system but did notice something abnormal so followed up with another test and discovered she had an enlarged lymph node next to her kidney.
They did a biopsy and the initial report just said there were "atypical cells" so he wanted her to follow up with a Hematologist.
She was given an appointment for this Wednesday.
Her Dr had also said he'd call her with the final report so she'd know what she was walking into on Wednesday.
He had not called so she called the office and he's out of town for weeks!
So basically for 5 days we have all been stressing and the closer this appointment comes the worse it is getting for us because we fear the unknown.
She wanted to be prepared and not have it sprung on her at this appointment that she has something like lymphoma.
She has been talking about every day life in terms of "if I'm sick..."
We just can't stop thinking about it.
Sorry this really was not a question or anything more just a I need to let the stress out somewhere.

Get the test results AND the CASE NOTES today. Begin a medical binder. Very important to carry everything with you to appts. Get every test result and case notes for every appt.

Sorry about your mom. HUGS

 

[Sabeking]

I am so sorry you did not get a better picture of what's going on! Please let us know what you find out. Remember one day at a time, hugs!

 

[Pea-n-Me]

People often have random lymph nodes enlarged with unknown causes. I had one on my neck for no apparent reason. My cousin had passed from lymphoma so they removed it, biopsied it, and it was benign. It was a lot of worry, though. I think the chances are better it's not something than that it is someting. Sometimes in these situations distraction is the best thing. Go to the movies. Go shopping. Do some fun fall things. Even if, say, it were to be something, it doesn't necessarily mean she will die from it. Many cancers can be treated successfully now. (And I say that as a 14 year breast cancer survivor, so not taken lightly.) A lot of people going through this waiting process visit us on the breast cancer survivor's thread. The waiting during testing is so hard. Because all of a sudden you're hit with the reality of your own mortality! We tend to live in a bubble and think nothing will ever happen to us, but when it does, BAM, it's devastating! But I would say unless she has other things she's been experiencing I would really try not to worry about it too, too much. The odds are in her favor.

 

[NFLDERS]

People often have random lymph nodes enlarged with unknown causes. I had one on my neck for no apparent reason. My cousin had passed from lymphoma so they removed it, biopsied it, and it was benign. It was a lot of worry, though. I think the chances are better it's not something than that it is someting. Sometimes in these situations distraction is the best thing. Go to the movies. Go shopping. Do some fun fall things. Even if, say, it were to be something, it doesn't necessarily mean she will die from it. Many cancers can be treated successfully now. (And I say that as a 14 year breast cancer survivor, so not taken lightly.) A lot of people going through this waiting process visit us on the breast cancer survivor's thread. The waiting during testing is so hard. Because all of a sudden you're hit with the reality of your own mortality! We tend to live in a bubble and think nothing will ever happen to us, but when it does, BAM, it's devastating! But I would say unless she has other things she's been experiencing I would really try not to worry about it too, too much. The odds are in her favor.

<This word for word.

Also, in my own experience medications ones on (and prolonged use of) can at times be the cause. Consider researching the side effects if your mom is on any medications.

 

[Queen of the WDW Scene]

We are becoming more frustrated.
My mom had the blood work the day she went to the Dr 12 days ago and they have not called about it.
She just at the CT he recommended of her upper body today and she asked for the reports from the other CT and biopsy so she'd have a copy herself.
The wording is scary and is prompting us to get very hardcore about this if she doesn't get answers by Wednesday as far as what this CT scan shows and what they are going to do next.
The report says she has at least 2 lymph nodes in her abdomen that are very very large and others "too numerous to count" that are semi larger than they should be.
It states its indicative of lymphoma.
The Dr that sent her for these original tests just got back from vacation today so if we are not getting a quick response from the Dr he recommended to her she is calling him and telling him he needs to get on this other Dr or we are going somewhere else.
This recommended Dr is associated with Roswell Park but I guess does not actually work for them so if he does not get on the ball we will be calling Roswell Park and getting an opinion from them.
We're talking 6+ weeks of knowing she has enlarged lymph nodes and no answers.

 

[gillep]

I am so sorry that you still don't have answers .

 

[NHdisneylover]

Oh how very stressful; I'm so sorry. Yes, I think you've been patient and fair and it is absolutely reasonable to get pushy and demand answers at this point

 

[keri125]

This is simply awful. I hate that you, your family, and your mom are being treated this way. I am sending you so many good vibes... please keep us updated.

 

[Pea-n-Me]

The wording is scary and is prompting us to get very hardcore about this if she doesn't get answers by Wednesday as far as what this CT scan shows and what they are going to do next.
The report says she has at least 2 lymph nodes in her abdomen that are very very large and others "too numerous to count" that are semi larger than they should be.

It states its indicative of lymphoma.

The report says that? Is that the exact wording?

 

[Queen of the WDW Scene]

The report says that? Is that the exact wording?

Yes.
I do realize that with that wording it does not mean that it is but that it indicates its a possibility.

 

[Queen of the WDW Scene]

Update:
After 4 calls in 2 days the Dr finally got back to us.
No enlarged lymph nodes in her upper body so they aren't going to take any out to test fromt here.
Blood work is fine.
He's going to consult with someone else and supposedly get back to her tomorrow to see if they are going to try another biopsy on the harder to get to ones in her abdomen or test the bone marrow which initially said he wouldn't do because its only 25% accurate and now all the sudden said he might and its 50% accurate as to whether there is something wrong or not.
Seems like after that its more just like "live your life and let me know if you get any symptoms" which does not sit well with us.

 

[IMissEd]

Normally, I would say to give them time, but I think you need to find someone else who is more aggressive.

My mother was diagnosed with Ovarian Cancer this last June and turned 70 the month later. She is relatively healthy for her age and the doctors have been very aggressive. So far she has done great.

I think your mother at least needs a second opinion.

I hope you all get some answers soon. Prayers and good thoughts.

 

[low-key]

it sounds so stressful butnyou jsut leant to lvie ne day at a time when playing the waiting game with the Doctors, she and you could do it

 

[paradesintherain]

Thinking of you and your mom! I hope you get definitive answers soon. Don't be afraid to ask for second opinions from other doctors. I hope you get some answers and resolution soon!

 

[I loveStitchnippyjon]

My DSis was totally asymptomatic when her doctor found an enlarged node in her neck. They had to biopsy it 3 times to get an adequate sample for diagnosis: lymphoma. She went to Roswell Park, had a long series of chemo and then radiation on some stubborn nodes in her neck and chest, but it's been 8 years in remission. She has complete trust in the RPMI doctors.
Our prayers are with you.

 

[Queen of the WDW Scene]

My DSis was totally asymptomatic when her doctor found an enlarged node in her neck. They had to biopsy it 3 times to get an adequate sample for diagnosis: lymphoma. She went to Roswell Park, had a long series of chemo and then radiation on some stubborn nodes in her neck and chest, but it's been 8 years in remission. She has complete trust in the RPMI doctors.
Our prayers are with you.

We are so lucky to have Roswell Park right in our backyard.

 

[Queen of the WDW Scene]

UPDATE:
She's getting a second biopsy tomorrow (Thursday morning).
This time in the hospital with a doctor that thinks he can get in there and get a good sized sample.
We are hoping that next week we will finally have some answers.

 

[gillep]

Thinking of you and your mom, glad she is getting a second biopsy and hopefully answers!

 

[Grumpy's Gal]

UPDATE:
She's getting a second biopsy tomorrow (Thursday morning).
This time in the hospital with a doctor that thinks he can get in there and get a good sized sample.
We are hoping that next week we will finally have some answers.