Mom has lung cancer.. need some advice

[Guest Farfbaz]

Hi...

Just found this message board recently.

My mom went to the ER a few weeks as she thought she had a broncial infection which was not clearing up (family doc diagnosed bronchial infection). They did an xray, and bloodwork, and CT scan and advised it was most likely lung cancer.. and referred her to a respirologist.

We saw the respirologist who scheduled a Bronchoscopy. Had the Bronchoscopy last wed, and get the results tomorrow. At the first appt with the respirologist he thought best not to give her any pain meds as they might cause pneumonia, or other complications, until the were sure what they were dealing with.

The CT Scan showed a 5cm x 6cm mass in her right lung. After speaking with the doc right after the bronchoscopy he advised that one of her airways was partially obstructed by the mass.

Mom has been in terrible pain for about a week or so (chest pain, headache etc), and has seemed to have gotten worse since the bronchoscopy. Our appointment is tomorrow to get the results..

My question is this.. Is it unusual for them to not prescribe any pain meds? What should we expect at the appt tomorrow? I assume they'll just confirm that it is lung cancer, and then refer us to an oncologist for staging and potential treatment options. Am i correct in thinking this?

Btw.. my mom is 62, smoker (until this).

[j's girl]

Hi, I am sorry you are dealing with this but you've come to a great place for info and support.

Your Mom's story is quite similar to my Mom's. Mom's mass was about the same size and also in her right lung and she was 60 at dx. We are also Canadian so dealt with the same "system" you are.

I'm not sure about pain meds. My Mom did't need them. I'm sure others will be along to advise on that.

Tomorrow you should take a notebook to your Mom's appointment. If you have time beforehand, you might want to discuss questions with your Mom and write them down. Or just write down your own. Through out the whole process, you'll be bombarded with info. It's a good idea to write things down so always take your notebook.

You're right in thinking you'll be refered to an oncologist. He'll likely order more tests to determine if and where it may have spread to.

I would recommend getting your Mom to contact the Canadian Cancer Society. My Mom was buddied with a couple of people who had similar diagnosis, and they were very useful contacts for information and emotional support. If you have to deal with waiting lists to see an oncologist and/or to get treatment, let me know. I'll tell you what we did with my Mom. Feel free to send me a private message.

Hope all goes well tomorrow. Get some sleep tonight. Let us know how it goes.

Shauna

[Don Wood]

All I can say is that the oncologist my wife went to had first priority to get the pain under control -- then the treatment for the cancer. He was a gem. Don

[Guest Farfbaz]

Hi.. thanks for the replies...

We had the appointment today. The bronchoscopy was inclonclusive as the mass is too far from the outside of the lung to get a clear reading. However they did note that the biopsy showed abnormalities.

The next step is a needle biopsy. We are waiting for a call from the radiologist for the appointment time. Then it's waiting again for the results.

Seems like there's more waiting involved than anything. And i'd think that time is of urgency and that the sooner it gets diagnosed the better. We seem to be doing more waiting than anything. The doctor still would not prescribe any pain meds as they could possibly cause some sort of infection or pneumonia.

Thanks

Renzo.

[Don M]

So I guess the respirologist (pulmonolgist in US)thought if it was an infection there could be a risk of getting peumonia from taking the pain meds..Since it is most probably cancer, I think your mom should see a doc and get some pain meds. I hope she got some today.

I think your mom should ask for a brain scan if she has a headache and there is no other obvious reason for the headache.

A cat scan is not proof of cancer. the next step could be a PET scan or a biopsy. A biosy is proof of cancer. A PET scan is a reliable indicator. It is difficult to get a reliable biopsy from a bronchoscopy. I had one, and the pulmonologist could not find a good sample.

I had a large mass in my left upper lobe and was able to have surgery. If it is cancer, the best possible outcome for your mom now is to have a surgical cure.

I hope the best for you and your mom.

Don M

[j's girl]

Renzo, has your family looked into private diagnositic clinics? It's not cheap but it may be an option that is a lot quicker.

I know the waiting is excrutiating. If you don't hear from the radiologist soon, start phoning and pestering. Say you want to double check that they got your file. Ask if there is a cancelation list that you can get your Mom on. You might need to be a total pain in the butt. But you know what they say about the squeaky wheel.

Hope she can get some pain meds soon.

Shauna

[marym]

Unfortunately waiting is part of the routine - but I wouldn't allow pain to continue while this time goes by. As soon as I was initally diagnosed while they scheduled and performed all the tests, I was given pain killersm First Vicodin and then MS-Contin. And I was also prescribed a mood elevator (antidepresssant) Lexapro. I think bothe were really helpful in letting me deal with all the day to day stuff combined with the new overwhelming blow of the diagnosis.

I would urge your doctor to consider the pain as a top priority. I also never heard of risk of Pneumonia with pain meds - but I cannot be sure. I was just never asked (almost 2 years now) to stop the pain meds even with exceedingly low white counts.

I hope you can get the assistance you need and the tests etc. quickly. It can be really frustrating to

while you are anxious to begin taking action.

Best wishes.

Mary

[Welthy]

Have they done blood oxygen tests on your Mom? Lack of oxygen can cause many side effects. One of Tony's larger tumors caused a compression of one of his bronchial passages and they got him on oxygen lickety-split. His breathing got better once the chemo started to shrink the tumor off of the bronchial tube, but his lungs are really crappy overall, so he has basically always been on oxygen. I can't help but think that lack of oxygen may be a cause of your Mom's headaches. Just a thought.

Sorry you have to wait -- we went through 3 weeks+ of testing before diagnosis. It's a bear when all you want to do is start treatment, but they need to know what type of cancer it is to appropriately treat it effectively.

All my best to you and your Mom.

Welthy

[Guest Farfbaz]

Hi..

Thanks for all the replies. As per hounding the radiologist... we're giving them until Tuesday. As her appt was this past thursday, and most doc office seem to be closed Friday's so we're giving them monday to get the ball rolling. I have mentioned the option of looking into a privte clincic to speed things up to her, but we'll wait at least until Tuesday as we really like the current respirologist.

My mom did have several breathing related tests at her first appt with the respirologist. All her stuff was normal. It doesn't appear to be an issue with breathing at this point, more just the pain. I believe her blood oxygen level was 99, and and her lung capacity was 76% - all within the normal range, which is something at least

She's not at all looking forward to the needle biopsy. I've tried to assure her that it will really be no big deal and that the bronchoscopy was probably more painful/difficult.

Does anyone here have any experience with needle biopsies? If so.. how was your experience? I've done some surfing and it seems pretty easy to me. They use a local anasthetic, insert the needle, obtain some samples, and then recovery is about an hour.

thanks

Renzo.