HELP ME UNDERSTAND THIS, PLEASE

[enyaw061032]

I went to the oncologist this afternoon, after being told that I have oat cell cancer, and he did explain that it was small cell.

He doesn't know if it is limited or extensive, and has me doing an MRI tomorrow, including checking my brain!

I also have an appointment with my surgeon to put in a port on Monday.

How is the port put in and does it hurt?

I am afraid I am having too much radiation!

In the last two weeks:

chest xray

cat scan of chest with and without contrast

PET scan

CAT SCAN AGAIN with and without contrast for my stomach and pelvis area.

BEEN PUT TO SLEEP: TWICE in last 2 weeks; once for bronchoscope and once for the mediastinoscopy so could do biopsy.

NOW scheduled for the MRI.

ONC said the PET scan lit up like a christmas tree,

but biopsy did not show problems in those areas; and only the stains showed the oat cancer; so he wants MRI, INCLUDING MY BRAIN..because he said it is more accurate than PET for cancer? I'd always heard PET WAS

What I am worried about is not only the radiation, but what is to come. What is the chemo like?

Barb

[marym]

Relax, your testing seems normal. I believe there is a high incidence of brain mets with sclc - but the response to treatment is very good.

I had a port inserted. It took about one hour, no residual pain or problems - couldn't lift for a week, couldn't shower for a day, and was black and blue. But having the port is great - no more sticking needles.

I think for the bronchoscopy they use conscious sedation not general anesthesia. This may also be true for the port. In my case, both instance left me with no grogginess, I didn't have to hang around after the procedure, etc.

And finally - radiation is not gonna get you - in fact, this may be a time radiation is your friend! I have had it twice for bone mets and twice for brain mets. All it did was "fix" for now the problem.

You should spend some time clarifying all your concerns and getting clear explanations of what they are doing, why and what does it mean. For me, the onc nurse was great - and is still available if I have any questions.

Best wishes,

Mary

[RandyW]

The port will be uncomfortable for a short period of time. Then you will not get stuck in arms anymore. Cleaning in office every 4-6 weeks flush. Not painful. The tests sound about right. HTey want to know everything going on inside you everywhere. Sending Prayers for strength and comfort.

[ztweb]

Barb,

Have you been checking your PMs? I sent you a message to tell you about my dad's radiation and chemo.

Radiation is better than cancer...stay strong, and know you have progressive docs who are making sure they look at all angels.

God bless,

Jen

[teresag]

Just wanted to add that the radiation you receive from xrays, CT scans and so forth is very minor. It doesn't figure into your total exposure. The radiation from an array of medical tests is inconsequential.

[Bev'sSister]

Barb, I also sent a pm to you. You seem to be having some of the same things my sister went through. The port was not a big thing for her. She had no problems with it. She did have all the tests that you are having and they are all necessary. Her side effects have been minimal so far. You can do this. It was a couple of days before she knew if her was limited or extended also. They want to be sure about everything, before they start treatment. Just have Faith and relax a little. You can handle this.

[daggiesmom]

It looks like your doctor is being very thorough in checking you. I also had these tests (by the way that was 4 1/2 years ago!) and wondered about the radiation; I was told it wasn't dangerous. Many of us here have had this full battery of tests and got thru just fine. You will too. I didn't have a port so I can't speak to that, but if you are found to be "limited" status, ask if you will be receiving radiation and chemo at the same time. Some studies indicate that this is the optimum treatment for SC limited.

As you go thru all these tests, please keep in mind there are many long term survivors here rooting for you.

Joanie

[enyaw061032]

Thanks to all of you for your support. I don't know what I would have done without the wonderful support of lung cancer survivors and loved ones. There is so much to learn and this site is like a big family come together to pull for each other. That means a lot to me, and I thank each and every one of you.

I had the MRI this morning. It took close to an hour; they did the scan with and then without contrast;about half way through they had me get up, walk a bit, and then put a shot in my arm and went back to the scan. The noise was hard for me, and I have clostophobia, but managed to get through this. I hate to admit it, but I moved during the brain scan and they talked to me through the tunnel I was in, and told me they had to redo it because I moved and lifted my hand to my eyes to cry. Shame on me. But I got myself together and said I CAN AND I WILL DO THIS, and after that all was OK. The people administering the scan were very nice.

Barb