adenocarcinoma

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adenocarcinoma

by mamacandi on Thu Sep 20, 2012 09:50 PM

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I am a 60 year old diabetic, with heart diease, and COPD. I have had a spot on my right lung for about 3 years,6mm had a pet scan which said it was negitive, in November 2011.  My lung doctor has been following it every three months.  Due to an unrelated illness I went to the ER  they did a Cat scan and the radiologist suggested a PET scan and a biospy.  This was in the end of May.  My doctor was leaving for a month and refered me out to a thorastic surgon to have these test done.  Medi Cal denied the Pet scan stating I had already had one and not enough medical data to support redoing the test.

The first of August my doctor returned and was livid that nothing had been done. He had me stop taking my plavix and asprin and did a biospy two weeks later.  The biospy showed that I had Adenocarcinoma.  He again refered me to a thorsic surgon, He needs a PET scan to stage the cancer? Again we had to wait for approval only this time the doctor got it through in a matter of days, schduled me for the scan for yesterday, when I got to the hospital, 2 hours away) they informed me that the machine had broken down and had to reschdule me for Oct. 3rd.  I am scared to death about the wait as I am not sure how fast this stuff can spread.  it has grown from 10mmx6mm to 18mmx9.5mm. My lung doctor said I have 65 percent lung capasity witch is duable for having it removed.  

My question is what is stageing, how do they do it and how fast does this type of non small cell adenocarcinoma grow or spred   Thank you for any imput

RE: adenocarcinoma

by thebyrdsfriend on Sun Sep 23, 2012 12:57 PM

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Hi there,  I'm sorry we have to meet this way.  Boy I sure do know how frustrating it is to have to wait like this.  It took me nearly 4 months to even get diagnosed with non small cell lung cancer (adenocarcinoma with BAC features - stage 3a.  If you click on my name, it will take you to my page, and you can read my story there.

So, As far as staging goes, I was staged when they did my biopsy.  A pet scan was not used to stage me.  But, that's not to say others don't stage that way.  With the biopsy, they take scads of samples (I think they took over 40 lymph nodes with me) to see if it has metastazised (or spread) to the lymph nodes.  I had one pet scan, that was right after I was diagnosed.  I believe they do that to see if it is in any organs, but, that can also be found with a ct scan with contrast.  I have never had another pet scan.  They are very expensive, and as you are finding out, the insurance companies want to be assured that it is truly going to be used as a tool, and not as a way to garner more money for the hospital.  Lots of people who have no bussiness asking for a pet scan just because they are paranoid, and just feel the need to use a Pet scan to "check things out" are the reasons why insurance companies try to keep Pet scans in check.  I'm sure you've met those kinds of people before.

Anyway, as you've found, once a Pet scan is deemed required, then the forces that be, get things done pretty fast.  I'm guessing your thoracic surgeon is trying to make sure you are operable.  Your cancer truly has not grown fast compared to others.  You are still in the mm stage, or what I mean to say is the tumors seem not to be in cm yet.  That is when they are getting big.  And, you've gone 3 years so I'm thinking just a little more time, about a week,  won't cause your cancer to grow any more than it has.  

So, I think you are on the right track.  I hope you're going to a quality cancer center.  I myself chose to go to a medical college or teaching hospital.  They have all the doctors who specialize in just your type of cancer, and they also have the abiltiy to enroll you in any clinical trials.  Their knowledge is just so much better than a local oncologist who treats ALL types of cancer with the general treatment plan for the "normal"  type of cancer and staging.  Ah, just a better decision for me.

I also had my doctor prescribe me xanax.  Most of us cancer patients need a little anxiety medication sooner or later.  It helps when we lay there and worry instead of sleeping, or when we just can't get cancer, cancer, cancer, out of our brains.  My whole attitude changed when once I got the anxiety out of my head.  I did not take one every day, only when needed.  Heck, I still take one now around "scan time" when I get "scanxiety".  That's when you go for your schedualled scans to make sure you're still okay, stressful.

So, I don't know if I've helped you, but if you have any othere questions just let me know.

Byrd

RE: adenocarcinoma

by mamacandi on Fri Sep 28, 2012 08:47 AM

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Thank you for taking the time to reply..I had the PET scan done and the doctor says that I must now have a broncosopy and also have to have a biopsy of the lymph nodes in my chest seems as though they are larger then they should be.  He is not sure about the PET scan results as I have metabolic syndrome so I do not matablize things  as a "normal" person and I have MS   I am OK one minute and scared the next.  Cardiologist added ativan to my list of meds.  it has helped to relax me and to rest.  Thanks again  Candi

RE: adenocarcinoma

by thebyrdsfriend on Fri Sep 28, 2012 12:32 PM

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Hi Candi,

     I meant to say that they took the lymph nodes for samples when they took out my upper right lung.  I did have a biopsy where they when through a cut in my throat and took a lymph node out of my chest.  It looked swollen to them.  It was not cancerous, so then I had a biopsy taken from a wedge resection, that is what told them I had cancer.  

     I'm glad you got ativan.  It does help.  Keep in touch, and know someone is rooting for you out here in cyber space.  Waiting sucks, that I do know.

Byrd

RE: adenocarcinoma

by mamacandi on Fri Sep 28, 2012 10:16 PM

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The doctor will be doing the biospy on Oct 8th.  He said that if the nodes or any of the stuff in the trac and bronc areas are cancer free he will bring me back in 5 days or so and remove the right lower lobe. He said he often removes the lung that same time as he will have a pathologist right there when he is doing this.  But given my health issues he feels it would be in my best intrest to recover from this before he does the lobe.  If the biospy on the 8th show cancer then we will talk treatment when I wake up.  Thanks again  Candi

RE: adenocarcinoma

by thebyrdsfriend on Sat Sep 29, 2012 10:16 AM

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Hi Candi, sounds like he's on the same track my thoracic surgeon was on.  After he went through my throat, and everything came back negative, he just rolled me over and did a wedge resection.  That is when they did the biopsy and found it was lung cancer.  So, I did have them both on the same day.  BUT, that was May 26th, and I didn't have the lobectomy until July 12th, after I'd gotten a second opinion.  I will tell you that the lobectomy was easier for me than the chemo was.  My new thoracic surgeon did a wonderful job with pain management.  I does take about a full year to recover, and for me, the most painful part was where they had a drain tube under my breast.  That evidently, is common, since friends have told me the same thing.  So, everything is doable, and I guess we just have to trudge forward.   I'll remember the 8th, and I'll be thinking of you, take care.   Byrd

RE: adenocarcinoma

by mamacandi on Sat Sep 29, 2012 10:22 PM

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I want to thank you so much for the time  you have taken to hear me and share with me it helps loads.  My father was always my sounding board but he passed two years ago from lung diease.   I don't have the answers my kids and grandkids question me about, and I don't want them to know how scared and fustrated I am, that is why I came to the board just to maybe find someone who will share truthfully what is in store.  Thanks for the good thoughs and mine to you   Candi

RE: adenocarcinoma

by thebyrdsfriend on Sun Sep 30, 2012 03:26 AM

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I'm glad I can help Candi.  I know how you feel wanting to talk with someone who can relate and tell you their experience.  I had a hard time findng anyone back in 2010.  I was blessed with meeting a very nice girl here going through the same thing as me at about the same time.  So, we were there for each other.  Mind you I also have an excellent support system in my family and friends here at home too.  But, I do know it helps to share with others, it helps me to help others going the unknown path.  It's scary, and if I can help someone by making it a little less scary, then that makes me feel good.  

I have a ct scan this Monday, find out the results then on Wed.  This is the time I go through what we all do at this time, "scanxiety".  lol  I usually just give myself only the day before to fret.  But, I must admit I do take a xanax at night.  It keeps me from lying there worrying.  Worry helps no one, and it just doesn't accomplish anything.  So, xanax is my friend this week-end.  lol  And with that, I bid you a good night and hope you have a pleasant Sunday.

Byrd

RE: adenocarcinoma

by mamacandi on Sun Sep 30, 2012 07:13 AM

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I will  send good thoughts your way each night, and a few xtra ones on Monday.  I hope all goes well.

All my kids and grandkids will be here for a fun filled Sunday at the Farm.  I raise pigs and my husband raises vegies.  We just had a new littler of piggies late Monday night.  Sadly tho we lost the mama.  So I am now feeding ten little piggies.  This has helped the days go by but I get so tired, not sure why but I do.  So looking forward to having six little helpers and their parents to do some pig feedings.  I must add the three year old is here most days as she lives across town, and lets me know when Piggies are mad hungry or peeing, lol.  I have many blessings and am a rich woman in measurements of love.  Hoping you have a Blessed day as well.   Candi

RE: adenocarcinoma

by thebyrdsfriend on Mon Oct 08, 2012 12:19 PM

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Hi Candy,

     I sent you a couple of private messages, but I don't know if you've gotten them.  If you look up above, you will see - My Profile  -  My Friends  -  My Notifications.  Click on My Notifications and you should see my responses to your letters.  That's all I can think of for you not having recieved them. 

     Anyway, I want to let you know that I am so thining of you today.  I know it's tense, and you have to wait until 12:30 today instead of 7:30, but I just want you to know there is someone here understanding what you are going through.

    Take care dear friend, and I hope you find the notes I left you and they haven't been swept off to some cyber space station.  lol

Helen

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