Lung lesion?

[Beachmama]

Hi everyone, I have some news that I am so confused about. Maybe you all can shed some light on it My mom's latest Ct scan came back showing a cloudiness on the lung that had the cancer. The onc said it was a lesion and it was from the radiation and could be infected. (mom has been coughing lately). So, when she went to see the lung specialist, he couldn't make any determination, and didn't prescribe any antibiotics for any possible infection,. He wants to do a broncoscopy! My mom couldn't have this done last time (we tried). She freaked out and wouldn't let them "gag" her with the tube. So, I am just so confused. I thought she was going to get a nebulizer treatment or something. Now, I am scared that the cancer is back and noone's telling us the facts. But the onc originally said she was 99% sure it was just inflammation.

I will make some calls tommorrow, but in the meantime, any words of wisdom or experiences you have to share would be appreciated. And don't sugarcoat it for me. Tell me what you think. Thanks!

Connie

[Patti B]

Connie-

I have never had radiation so I cannot help you with that. However, when you say the doc may be sugar coating this - I have never found any oncs that do that. They are usually quite blunt.

You say your mom couldn;t have the bronchoscopy - when I had mine, they put me into twilight. Never knew what was going on. How does your doc perform them??

Anyway, I wish you and your mom good luck. Take a deep breath and try to relax. And of course, PLEASE keep us posted on what is going on.

Hugs to you and your mom - Patti B.

[SandraL]

Hi Connie. I don' t think there is any need to panic. Although it is too bad your mom doesn't seem to be able to get through a bronchosopy. I think issues after radiation are common and can be dealt with. So just keep following up like you are and I am sure everything will be just fine. I know it is hard not to worry. Take care

Sandra

[Beachmama]

Thanks Sandra, thanks Patti. I am waiting to hear back from the onc now. I am requesting a new lung doc (names) and apparently a new script. My mom was given a script for antibiotics ans she never filled it, and threw away the paper!!!!! I wondered about that. She should have been on an antibiotic the whole time, but wasn't.

She has a cough that is concerning everyone. Her onc (according to my sister) said it's a typical side effect of all the radiation and that there is no cancer there. But the lung doc doesn't like the cloudiness on the scan. But that cloudiness has been there since after her radiation. The ct scan doesn't show any new cancer. According to my sister who was with my mom for the scan results.

I feel better, but I feel like my mom is not doing her part to stay well. She could have have 2 weeks of antibiotis in her already and we could have closer to being 100%.

Man I am so mad.

I will post back after I talk to the onc. I really need her to clear this up for me, ya know?

Thanks for being there

Connie

[Connie B]

First I want to say, 2nd and 3rd hand information SUCKS! Sounds to me that some of this info is getting missunderstood. First hand is best.

Tape recorders are allowed druing doctor's visits and they are OH SO HELPFUL to the patients and caregivers down the road.

Your mom may very well have (Radiation Pneumonitis). I assume your mother is a Small Cell Lung Cancer Survivor, being your posting in that forum? Could you take a minute please and complete your mom's PROFILE for us. It's helpful for us to help you better if we have all the info.

Click on PROFILE at the top of he page and give us her date of dx.s, treatment plans and any info that might be helpful to all of to better help you.

If you don't have all the correct info, it's very hard for us to offer you support and info too. This is something we never try to second guess about. It's important to have the correct information.

Does your mom live alone? Does someone go with her for her doctor's appointments & treatments? It's helpful to her and to you if someone does.

[Beachmama]

Thanks Connie B. My mom usually goes to most doctors appointments alone, which is terrible. But we all work or have a full house. It's terrible.

I did some research on the radiation pneumonitis, and it sounds like something she could have. But she doesn't have a fever or any abnormal blood tests. I just wish someone would have been looking for these things all along. It also leads me to radiation fibrosis, which is sounding more like what she has now. Scarring on the lung. What are the consequences of this? I still haven't heard for the onc. how frustrating.

I updated my profile so I hope that helps.

Looks like we may be getting a hurricane here in the next few days. The media is all crazy over this depression in the water. (I'm in South Florida).

Keep us in your prayers, and I'll do the same.

Connie B too!!!!

[Beachmama]

You were right Connie!!! I just got off the phone with the onc and she said my mom has the pnuemoitis. The medicine a=she prescribed for my mom was a steroid. And she really wants the bronoscopy too. She thinks it's the best way to see how advanced this is. I told her we wanted a new lung guy anyway. My mom doesn't like the other guy!!!

ANyway, she clarified to me that she doesn't think it's a return of cancer. Just some leftover damage from tht eradiation. Which makes me feel a ton better. I feel like we can handle anything NEW. Just not more chemo right now, ya know?

[Connie B]

I am happy to hear it's NOT CANCER!! HOORAY!!!!!!! That pnuemonitis isn't fun to have, I know I had it as have many others here have also.

BUT it does need to be watched as well. It's Radiation pnuemonitis and it can be a witch to get rid of too.

Yes, Radiation does leave some damage too. One of my dear dear friends who is a Small Cell LC Survivor of 8 years now has radiation damage and she has a cough that just won't go away. It's part of her life and she has learned to live with it, but it sucks now and then. She doesn't complain because she's just grateful to still be here, as we all are.

Give mom my best and know we're here for you whenever you have the NEED! Glad I was able to lend some helpful info. and support.

A new DOC would be in order too!

Take care and Hugs to you and mom.

[Beachmama]

Mom is still coughing and losing alot of weight. I am concerned. What should I expect with this pneumonitis? The steroids she's taking aren't really curbing the coughing at all. Her doc isn't in the office till tomorrow, but they never tell me everything I need to know. How many rounds of steriods should she have before seeing an improvement? How long do we fight this thing? And if we go through with the bronchoscopy, what will we really know about this? And why can't we do all minimally invasive treatments first, like medication.

Any advice or personal experiences would be appreciated.

Connie

[SandraL]

Hi Connie. This does not sound good. When you say doc do you mean her medical oncologist? Have you phoned the clinic if you are able to? I know there are nurses who answer the phone at my clinic and they can possibly help or tell you to come in, go to emergency etc. And they will consult with the med oncs if necessary. Or maybe phone you regular doctor's office too...if it is you regular gp that is away there must be somebody covering for him. I think you reason to be concerned and should not wait another day to do something about. Sorry I can't help with any of the symptoms. I can see why the bronch is going to be a problem. With lc though, as far as I know, the bronch is actually the least invasive procedure to find out what is going on. However, at least they put you really under for a thorasacopy or a mediastinoscopy. But those are like surgery and take a fair bit to recover from.

I hope you get some help soon.

[Connie B]

Dear Dear Connie,

Take a deep breathe in and blow it out. I totally understand your fear and panic issues. And sadly enough this is serious. Pneumonitis is serious and it takes time to heal. This is a form of Radiation Pneumonia and it can cause serious issues. I was on steroids for 6 weeks when I had it and it took about 8 days before I started to feel somewhat human. I coughed and I was VERY short of breath and I felt weak all over.

They can not do any tests until they get her coughing and pneumonitis under control. Please take a minute and click onto our Grace website

at the front of our page here. Dr. West will be MORE then happy to answer any of your questions.

With cancer, comes weight loss, (in most cases) try not to get to upset over that, I understand what your saying, but for now the most important issue is the pneumonitis.

Either go and ask Dr. West, or call her Dr. Clinic and tell them you are very worried. And if you don't get answers, you can always take mom to the ER.

Let us know how things go for you and you mom.

[Beachmama]

everything I am reading about pneumonitis fits my mom to a tee. The only thing that doesn't fit is the way we are being treated. There has only been one prescription given for the steroid, and that's it. Everything I read says there should be many rounds of steroids, over the course of months. And oxygen therapy as well as possible antibiotics and a few other drugs.

I have made two calls today to the onc and the lung doc, now I wait for the call back.. I want more scripts and more info.

Connie, thank you for responding. You said you had this too. Does it ever really go away? WHat did you do to get rid of it.

[Connie B]

Okay Connie, lets try and figure this out together.

So your mom DOES have a pulmonogist, that's the doctor that should be dealing with this issue.

My (Radiation Onc Doc) when I was dx.d with pneumonitis sent me to my Pulmonogist and he is the one that treated me for this problem.

2. Which doctor is she seeing for this problem? And who told her it was radiation pneumonitis?

Having said that. Yes it takes time for this to go away. I think I mentioned I was on steriods for 6 weeks in one of my posts above. (it was 13 years ago for me, but if I remember right it was 6 or 8 weeks I was on steriods) This is nothing to monkey around with. So, I would make sure she is being treated correctly for this problem.

I didn't need oxygen but I was short of breath, but that got better within 6 days of taking the steroids. I wasn't on antibiotics.

The only thing that I know that works for this is steroids, but maybe someone else will chime in and offer more info if I'm wrong.

Check with Dr. West here a LCSC.

Keep us posted.

Wishing you and mom good things!!