Does this make sense?

[FrannieB]

Hi. My mom died almost nine years ago from SCLC and now it looks like my half sister/roommate may be headed for the same LC journey.

I was mom's primary caretaker (moved in with her) while she fought for 15 months (it was stage IV when she was diagnosed). My half sister/roommate is 57 (I'm 39 - different fathers)has never smoked even a single cigarette but she did grow up in heavy second hand smoke (as did I). Last winter, she started feeling badly and had tests. The only thing they found was an enlarged lymph node in her pelvis and an elevated WBC. A couple months ago, she started having difficulty breathing, shortness of breath, etc. She went on asthma meds but they haven't helped. She has had a cough that won't go away and hoarseness.

Last week, she saw a pulmonologist. I waited in the waiting room because we both assumed he would just change her asthma meds and send her on her way. That's not exactly what happened. They did a chest x-ray and compared it to one she had in February. The doctor told her "we have a potentially serious problem" and that there was a "significant change between the pictures done in Feb. and the one done that day." She pretty much stopped hearing after that. They set her up for a CT scan the next day ("STAT" was the instruction) and arranged to come in Tues. (tomorrow) to meet with her about the results (the doctor and his PA are usually at another office on Tuesdays). Myself and a friend are going with her tomorrow, needless to say.

I'm not a medical person but I became VERY well educated about LC and cancer in general when mom was sick. After the CT last week, they gave her the hard copies to take to her doctor. I took them out and looked at them. There is something pretty big in one lung and something smaller in the other. My understanding is that lungs aren't supposed to have anything "in" them.

I don't expect to be told anything concrete tomorrow. I think it will go one of two ways. 1.) they can tell from the scan it's scar tissue or an enlarged lymph node or whatever and that would be good news or 2.) It's something but they need a bronchoscopy to know WHAT.

Does that seem reasonable or am I jumping to conclusions because of my history?

Oh, and she's going out of town to a workshop for five days on Wednesday, so it'll be at least a week or two before they could do a bronchoscopy. I think I'm actually more antsy to know what's going on than she is!

On a personal note, this is kinda freaking me out because the pulmonologist is the same one who diagnosed mom's LC, same office, everything. Like I said, I was mom's primary caretaker and I would be my sister's, should it come to that. I'm already having some trouble coping with the possible repeat trip down this road, especially since she's my only remaining family member.

Thanks for your input. I've read some of your posts and this is a really nice group of people. I wish I'd had this kind of support available when mom was sick!

Thanks,

Frannie

[Connie B]

It could be TB, it could be Sarcoidosis, it could be cancer...... They thought for SURE my cancer was sarcoidosis, eaily compared to lung cancer.

Wait and see what all the tests show.

My dad, mom and sister all had lung cancer, and then there is me!! All three of my family members passed away within a year of being dx.d. I'm an 11 year survivor.

[cindi o'h]

Hi Frannie.

Welcome.

Not knowing is sometimes one of the most difficult parts. Trying hard to put it out of your mind is easier said than done, right?

I have seen alot of CT scans and unless I worked in around radiology, I would have a hard time figuring them out. Sometimes something will look obvious to me on a scan, and it will be something else completely. Can't tell you how many times that has happened. With a PET and a cxr even.

I am criss crossing my fingers in hopes that it is a fungus or something very benign.

Cindi o'h

[ztweb]

Frannie,

No, I don't think you are jumping the gun, but I do think you have to be open minded...at this point it could be a number of things. Take deep breaths, know that so much has developed in the area of LC in the last few years, and know you have a huge support system here. Keep us informed. I pray for God to guide you as you learn more, and as you walk this journey, however long or short it is.

God Bless,

Jen

[Donna G]

It seems reasonable to me that they would either do a bronchoscopy or a CT guided needle biopsy . They decide the best approach by what would be easiest or possible to get a pinch of tissue. I would hope this would be done if there has been those changes you describe. I hope they do something to let her know one way or the other what it is. As Connie says , especially were she has a history of Asthma it could be a chronic type of lung infection that needs treatment but whatever it is best to know and get treatment started. Please let us know.

Prayers going up that if may be something benign.

Donna G

[MsC1210]

Hello Frannie,

I cannot add anything differently than what the others have already told you here. The waiting and worry is so hard. I pray that this is just nothing serious. I can understand your fears having been through this with your mom. Please know that we are all here for you, and we are all hoping that you will be posting again very soon that your sis is fine!

Prayers and positive thoughts,

Chris

[tnmynatt]

The doctors were sure that my dad had LC and it was in a difficult spot to biopsy. They went in to take out part of his lung and found out it was MAC (microbacterium avium complex), a bacterial infection. He has lived very well with it for about 7-8 years. Praying for similar results. Much better to have an infection than LC.

Hoping she decides to get on with finding out more soon. Take care.

[Don Wood]

Welcome, Frannie! Your anxiety is understandable. You have gotten some good info from the folks here -- take it slowly, and see what is found -- don't borrow trouble until it comes knocking. Hang in there and keep us posted. Don

[francesbean]

Hoping that the results turn out negative for LC.

[mitzu]

I'll tell you something: if they reccomend a bronchoscopy, I would have it done ASAP, not next week. Forget about "workshops" and try to find out right away. I really hope it's nothing, it could be emphysema or pneumonia or fluid in the lungs.

Ask the docs what they suspect, don't be afraid to ask questions.

Good luck.

[RandyW]

Knowledge Is Power Find out Now and Do not wait.

[Maryanne]

Hi Frannie,

I could see how knowledgeable you are. So sorry you are going through this anxiety again. But it may not be LC. Try to relax and if it is, then you can cross that bridge when you get to it. So let's not jump the gun, so to say, until she does have the testing done.

Keep us posted.

Maryanne

[marym]

I would get the tests done asap. The bronchoscopy is a fairly mild test that I had no recuperation from. And it let me start planning what I was going to do.

Mary

[Don M]

Frannie;

I hope the tests show no lc for your sister. I suspect tht your sistr wants to put it of her mind for a while and thus goes to the workshops. I proceedded with my tests and treatments fast as I could arrange them.

don M

[FrannieB]

Update on my sister:

We saw the pulmonologist today for the CT results. HE said the nodes have grown "significantly" since March. She's having a PET scan a week from tomorrow so they can determine which nodules (the word used on the referral)are "hot." (am I correct in thinking that means malignant?). The following Monday (two weeks from yesterday) she sees a thoracic surgeon to schedule at mediasconoscopy. Hopefully, that will happen quickly because this is already seeming rather drawn out. He, of course, kept saying "we'll have to wait and see" what it is.

One thing that concerned me is that when he learned she had a liver biopsy last fall (for NASH), he asked the PA if it was "negative for glomulomas(sp?)... that leads me to think he's definitely leaning toward cancer (he probably didn't realize one of us would know what that meant).

Boils down to more waiting, I guess. Ugh. Thanks to all of you, though, you're a great group!

Frannie

[Don Wood]

"Hot" spots are those areas that light up on the scan. It could be cancer but it could be other things too. It is just an indication in the scheme of things.

In addition to hot spots that were cancerous for Lucie, she has had bone spots glow that were due to bone healing, for example. Don

[ztweb]

Urgh! So sorry about the wait. Glad you are right on it, and hopefully those hot spots show up as other things instead. God bless!

Jen