They removed the upper left lobe on 4/30. There was a tumor that had been biopsied so we knew it was adenocarcinoma, but there was a smaller one in there, and I didn't find out until the day I was discharged that it was squamous. What the heck is that about? Now what do I do? 2 different types of cancer in one lobe. The small one had been seen on X-rays before but always was dismissed as a scar. I had hoped that I wouldn't have to have any treatments, but looks like I will. Now I have to either go to MDA here in town or find somewhere else.

_________________
2/29/12        Sinus CT Scan
3/07/12        Scheduled surgery for blocked front sinuses for 3/12/12. Went to hosp. for pre-op tests.
3/08/12        Chest xray showed something new. Had a Chest CT scan done right away.
3/09/12        Spot on upper left lobe of lung. Cancel sinus surgery & go to pulmonary dr. Need to get PET scan done.
3/13/12        Golf ball size mass in lung. Probably cancer. 2 spots but one is small and from an old injury (been there for 3 or so years).
3/19/12        PET Scan
3/20/12        PET scan shows cancer in both spots. Need biopsy & surgery to remove part of lung.
3/23/12        Needle biopsy through back. Lung collapsed. Admitted to hosp. (in 8 days) Stopped smoking (DUH)
3/27/12        Biopsy results, family conference. Malignant adenocarcinoma, NSCLC. Curable with surgery. Not sure about small spot - will know after surgery & path reports. 
4/03/12        Met w/thoracic surgeon. Need Pulmonary functon test. Not cardiologist though.
4/10/12        PFT & Lung Scans. Lobectomy surgery set for 4/23/12 w/Scheinin at Methodist.
4/20/12        Broke out in Shingles. Postpone surgery for a week.
4/30/12        Lobectomy - remove ULL. Methodist Hospital.
5/03/12        Atrial Fibulation common because of surgery. Heart monitor on. Having trouble w/pocket.
5/05/12        Home. Got path report - adenocarcinoma & squamous (small spot) both in ULL. Cancer free. Not in the lymph nodes. Staged at IB.
5/15/12        Follow-up w/Dr. Scheinin. Need oncologist for preventative care. Cancer is gone though. 
5/23/12        Birthday & Bella's kindergarten graduation. Having trouble walking, balance, moving. Brain & body not meshing at all. Pain meds? Epidural after effects? Not sure this cancer is really gone.
6/06/12        Go to PCP to do neuro check up. Failed miserably. Using cane to walk. Alien left arm syndrome
6/11/12        Brain MRI at So. Loop Imaging
6/12/12        Go to PCP for MRI results. Baseball size (6cm x 4cm) tumor in brain. Moves me to Stage IV. Need neurosurgeon. Life threatening.
6/13/12        Met Medical oncologist. Says need brain surgery.
6/15/12        Neurosurgeon. Can't do surgery until 6/27 because of privileges at MH Mem City.
6/18/12        2nd opinion neurosurgeon. Can do surgery on 6/20/12 at St. Joseph's. Losing movement each day.
6/20/12        Image Guided Craniotomy, bilateral. (Right posterior Parietal Occipital lobe)
6/24/12        Home from St. Joe. Can't be left alone. Therapists & nurses to come over. Need Radiation.
6/26/12        Met w/ radiation onc. dr. Need WBR w/Boosts. 
6/29/12        CT Scan at St. Joe because of bad headaches
7/02/12        Radiology Oncologist 2nd opinion. Said same thing as 1st but at MHNW.
7/06/12        Radiation simulation set-up.
7/09/12        PET Scan - No evidence of new tumors in rest of body.
7/10/12        Radiation begins. Stitches removed at Neurosurgeons. Left a piece of tumor in there. Too dangerous to take out? 10 treatments & 5 Boosts
7/27/12 Finished WBRT

They found two types of cancers in my tumor also. Was the tumor removed? Is the doctor recommending chemo now? Those are both nonsmall cell cancers. If chemo is recommended, it might change the type of chemo, but maybe not.

How are you feeling? It's been 9 days since your surgery? First be concerned with pain control and healing, then worry about the "what next." Easier said then done!

Are you talking about MD Anderson in Orlando or Houston? I've dealt with MDACC-Orlando and Florida Health Orlando. I recommend MDACC.
Good luck,
Muriel

_________________
Dx NSCLC 5/03. Surgery UR lobe. Staged as 1B. Chemo (taxol & Carbo)9/15/03 - 11/13/03. Wonderful CTs until Nov 04. Surgery 11/27/04, again staged as 1B. Chemo (Cisplatin and Gemzar) 2/05 to 6/05. Good CTs and PET since chemo.

Both of the tumors were removed. In the beginning my pulmonary dr said that she thought the cancer would be gone once the lobe was removed but we weren't sure if I would need chemo or not. It depended on the small tumor. The surgeon, before he discharged me from hosp on Sat., told me to get in touch w/pulmonary dr. and oncologist. My husband is against chemo, but I think that is because he is scared of what that could bring. I just want this cancer to be gone.

I am in a lot of pain and just can't find a way to sit/recline or lay, to get comfortable. If I use the wedge pillow and lay on my back it's bearable but I have to stay in my bed for that to work and that drives me nuts, too.

I am in Houston and have been told that it would be"silly" not to go to MDA, but I'm just not sure if that is the right place for me or not.

_________________
2/29/12        Sinus CT Scan
3/07/12        Scheduled surgery for blocked front sinuses for 3/12/12. Went to hosp. for pre-op tests.
3/08/12        Chest xray showed something new. Had a Chest CT scan done right away.
3/09/12        Spot on upper left lobe of lung. Cancel sinus surgery & go to pulmonary dr. Need to get PET scan done.
3/13/12        Golf ball size mass in lung. Probably cancer. 2 spots but one is small and from an old injury (been there for 3 or so years).
3/19/12        PET Scan
3/20/12        PET scan shows cancer in both spots. Need biopsy & surgery to remove part of lung.
3/23/12        Needle biopsy through back. Lung collapsed. Admitted to hosp. (in 8 days) Stopped smoking (DUH)
3/27/12        Biopsy results, family conference. Malignant adenocarcinoma, NSCLC. Curable with surgery. Not sure about small spot - will know after surgery & path reports. 
4/03/12        Met w/thoracic surgeon. Need Pulmonary functon test. Not cardiologist though.
4/10/12        PFT & Lung Scans. Lobectomy surgery set for 4/23/12 w/Scheinin at Methodist.
4/20/12        Broke out in Shingles. Postpone surgery for a week.
4/30/12        Lobectomy - remove ULL. Methodist Hospital.
5/03/12        Atrial Fibulation common because of surgery. Heart monitor on. Having trouble w/pocket.
5/05/12        Home. Got path report - adenocarcinoma & squamous (small spot) both in ULL. Cancer free. Not in the lymph nodes. Staged at IB.
5/15/12        Follow-up w/Dr. Scheinin. Need oncologist for preventative care. Cancer is gone though. 
5/23/12        Birthday & Bella's kindergarten graduation. Having trouble walking, balance, moving. Brain & body not meshing at all. Pain meds? Epidural after effects? Not sure this cancer is really gone.
6/06/12        Go to PCP to do neuro check up. Failed miserably. Using cane to walk. Alien left arm syndrome
6/11/12        Brain MRI at So. Loop Imaging
6/12/12        Go to PCP for MRI results. Baseball size (6cm x 4cm) tumor in brain. Moves me to Stage IV. Need neurosurgeon. Life threatening.
6/13/12        Met Medical oncologist. Says need brain surgery.
6/15/12        Neurosurgeon. Can't do surgery until 6/27 because of privileges at MH Mem City.
6/18/12        2nd opinion neurosurgeon. Can do surgery on 6/20/12 at St. Joseph's. Losing movement each day.
6/20/12        Image Guided Craniotomy, bilateral. (Right posterior Parietal Occipital lobe)
6/24/12        Home from St. Joe. Can't be left alone. Therapists & nurses to come over. Need Radiation.
6/26/12        Met w/ radiation onc. dr. Need WBR w/Boosts. 
6/29/12        CT Scan at St. Joe because of bad headaches
7/02/12        Radiology Oncologist 2nd opinion. Said same thing as 1st but at MHNW.
7/06/12        Radiation simulation set-up.
7/09/12        PET Scan - No evidence of new tumors in rest of body.
7/10/12        Radiation begins. Stitches removed at Neurosurgeons. Left a piece of tumor in there. Too dangerous to take out? 10 treatments & 5 Boosts
7/27/12 Finished WBRT

usually after surgery Chemo is short lived and only done as an insurance eon getting rid of everything. A friend of mine went that route years ago and is still NED and that is No Evidence of Disease and that is a great thing... so no long term effects just a few treatments and done ..

_________________
April/03 My Wife Deborah, age 46, diagnosed adenocarcinoma NSCLC
1/20/2006 Admitted to hospital Respiratory distress
1/23/2006 Ran to the light and is waiting for us to be rejoined in the Kingdom Of Heaven Her journey is Over but mine lingers on for Now!!!
4/23/07 DEb is joined in Peace by her Puppy Dawg Daisy from Cancer
8/30/07 Got new Pup named Mocha!!

"No matter hnow much it hurts, No matter how alone you feel, Your friends will help you get through anything!!"
Scrubs!!!!Yes the comedy show!!!

The Reason I advocate
If you would like to see our family photos Click on this link!
http://deborah-wallin.memory-of.com/

My memory-of Link is good to go now if you want to see it!!

I'm a 9 year NSCLC survivor. I was diagnosed in May 2003, had surgery in June (Stage 1B), and decided to have chemo just to be sure I was doing everything I could to prevent its return. A yr. and a half later (Nov 2004) a tumor was found in the upper lobe of my other lung. Again I did the surgery, chemo routine and I've been NED ever since. It's not fun, but it's doable.

If I lived in Houston I wouldn't consider going anyplace other than MDA.

Are you taking your pain pills as needed? [As needed = before the pain begins.]

Good luck,

Muriel

_________________
Dx NSCLC 5/03. Surgery UR lobe. Staged as 1B. Chemo (taxol & Carbo)9/15/03 - 11/13/03. Wonderful CTs until Nov 04. Surgery 11/27/04, again staged as 1B. Chemo (Cisplatin and Gemzar) 2/05 to 6/05. Good CTs and PET since chemo.

Thanks Muriel. I will be getting in touch with MDA soon. I have an appt with surgeon for follow up tomorrow. Maybe he will let me know what my cancer is staged at. As far as the pain goes, I am in awful pain and have been complaining about it. I feel like my rib cage has been cracked in a couple spots. The only way I can escape the pain is to sleep but I only sleep a couple hours at a time.

_________________
2/29/12        Sinus CT Scan
3/07/12        Scheduled surgery for blocked front sinuses for 3/12/12. Went to hosp. for pre-op tests.
3/08/12        Chest xray showed something new. Had a Chest CT scan done right away.
3/09/12        Spot on upper left lobe of lung. Cancel sinus surgery & go to pulmonary dr. Need to get PET scan done.
3/13/12        Golf ball size mass in lung. Probably cancer. 2 spots but one is small and from an old injury (been there for 3 or so years).
3/19/12        PET Scan
3/20/12        PET scan shows cancer in both spots. Need biopsy & surgery to remove part of lung.
3/23/12        Needle biopsy through back. Lung collapsed. Admitted to hosp. (in 8 days) Stopped smoking (DUH)
3/27/12        Biopsy results, family conference. Malignant adenocarcinoma, NSCLC. Curable with surgery. Not sure about small spot - will know after surgery & path reports. 
4/03/12        Met w/thoracic surgeon. Need Pulmonary functon test. Not cardiologist though.
4/10/12        PFT & Lung Scans. Lobectomy surgery set for 4/23/12 w/Scheinin at Methodist.
4/20/12        Broke out in Shingles. Postpone surgery for a week.
4/30/12        Lobectomy - remove ULL. Methodist Hospital.
5/03/12        Atrial Fibulation common because of surgery. Heart monitor on. Having trouble w/pocket.
5/05/12        Home. Got path report - adenocarcinoma & squamous (small spot) both in ULL. Cancer free. Not in the lymph nodes. Staged at IB.
5/15/12        Follow-up w/Dr. Scheinin. Need oncologist for preventative care. Cancer is gone though. 
5/23/12        Birthday & Bella's kindergarten graduation. Having trouble walking, balance, moving. Brain & body not meshing at all. Pain meds? Epidural after effects? Not sure this cancer is really gone.
6/06/12        Go to PCP to do neuro check up. Failed miserably. Using cane to walk. Alien left arm syndrome
6/11/12        Brain MRI at So. Loop Imaging
6/12/12        Go to PCP for MRI results. Baseball size (6cm x 4cm) tumor in brain. Moves me to Stage IV. Need neurosurgeon. Life threatening.
6/13/12        Met Medical oncologist. Says need brain surgery.
6/15/12        Neurosurgeon. Can't do surgery until 6/27 because of privileges at MH Mem City.
6/18/12        2nd opinion neurosurgeon. Can do surgery on 6/20/12 at St. Joseph's. Losing movement each day.
6/20/12        Image Guided Craniotomy, bilateral. (Right posterior Parietal Occipital lobe)
6/24/12        Home from St. Joe. Can't be left alone. Therapists & nurses to come over. Need Radiation.
6/26/12        Met w/ radiation onc. dr. Need WBR w/Boosts. 
6/29/12        CT Scan at St. Joe because of bad headaches
7/02/12        Radiology Oncologist 2nd opinion. Said same thing as 1st but at MHNW.
7/06/12        Radiation simulation set-up.
7/09/12        PET Scan - No evidence of new tumors in rest of body.
7/10/12        Radiation begins. Stitches removed at Neurosurgeons. Left a piece of tumor in there. Too dangerous to take out? 10 treatments & 5 Boosts
7/27/12 Finished WBRT

push with Doc for pain management because that is priority 1 for cancer patients!!! Hope You get some relief soon and thoroughly!!

_________________
April/03 My Wife Deborah, age 46, diagnosed adenocarcinoma NSCLC
1/20/2006 Admitted to hospital Respiratory distress
1/23/2006 Ran to the light and is waiting for us to be rejoined in the Kingdom Of Heaven Her journey is Over but mine lingers on for Now!!!
4/23/07 DEb is joined in Peace by her Puppy Dawg Daisy from Cancer
8/30/07 Got new Pup named Mocha!!

"No matter hnow much it hurts, No matter how alone you feel, Your friends will help you get through anything!!"
Scrubs!!!!Yes the comedy show!!!

The Reason I advocate
If you would like to see our family photos Click on this link!
http://deborah-wallin.memory-of.com/

My memory-of Link is good to go now if you want to see it!!

Thanks Randy. I will ask tomorrow. The pain is very draining and I do need help with it.

_________________
2/29/12        Sinus CT Scan
3/07/12        Scheduled surgery for blocked front sinuses for 3/12/12. Went to hosp. for pre-op tests.
3/08/12        Chest xray showed something new. Had a Chest CT scan done right away.
3/09/12        Spot on upper left lobe of lung. Cancel sinus surgery & go to pulmonary dr. Need to get PET scan done.
3/13/12        Golf ball size mass in lung. Probably cancer. 2 spots but one is small and from an old injury (been there for 3 or so years).
3/19/12        PET Scan
3/20/12        PET scan shows cancer in both spots. Need biopsy & surgery to remove part of lung.
3/23/12        Needle biopsy through back. Lung collapsed. Admitted to hosp. (in 8 days) Stopped smoking (DUH)
3/27/12        Biopsy results, family conference. Malignant adenocarcinoma, NSCLC. Curable with surgery. Not sure about small spot - will know after surgery & path reports. 
4/03/12        Met w/thoracic surgeon. Need Pulmonary functon test. Not cardiologist though.
4/10/12        PFT & Lung Scans. Lobectomy surgery set for 4/23/12 w/Scheinin at Methodist.
4/20/12        Broke out in Shingles. Postpone surgery for a week.
4/30/12        Lobectomy - remove ULL. Methodist Hospital.
5/03/12        Atrial Fibulation common because of surgery. Heart monitor on. Having trouble w/pocket.
5/05/12        Home. Got path report - adenocarcinoma & squamous (small spot) both in ULL. Cancer free. Not in the lymph nodes. Staged at IB.
5/15/12        Follow-up w/Dr. Scheinin. Need oncologist for preventative care. Cancer is gone though. 
5/23/12        Birthday & Bella's kindergarten graduation. Having trouble walking, balance, moving. Brain & body not meshing at all. Pain meds? Epidural after effects? Not sure this cancer is really gone.
6/06/12        Go to PCP to do neuro check up. Failed miserably. Using cane to walk. Alien left arm syndrome
6/11/12        Brain MRI at So. Loop Imaging
6/12/12        Go to PCP for MRI results. Baseball size (6cm x 4cm) tumor in brain. Moves me to Stage IV. Need neurosurgeon. Life threatening.
6/13/12        Met Medical oncologist. Says need brain surgery.
6/15/12        Neurosurgeon. Can't do surgery until 6/27 because of privileges at MH Mem City.
6/18/12        2nd opinion neurosurgeon. Can do surgery on 6/20/12 at St. Joseph's. Losing movement each day.
6/20/12        Image Guided Craniotomy, bilateral. (Right posterior Parietal Occipital lobe)
6/24/12        Home from St. Joe. Can't be left alone. Therapists & nurses to come over. Need Radiation.
6/26/12        Met w/ radiation onc. dr. Need WBR w/Boosts. 
6/29/12        CT Scan at St. Joe because of bad headaches
7/02/12        Radiology Oncologist 2nd opinion. Said same thing as 1st but at MHNW.
7/06/12        Radiation simulation set-up.
7/09/12        PET Scan - No evidence of new tumors in rest of body.
7/10/12        Radiation begins. Stitches removed at Neurosurgeons. Left a piece of tumor in there. Too dangerous to take out? 10 treatments & 5 Boosts
7/27/12 Finished WBRT

Im happy you were able to have surgery. Hopefully they got it all and wont ever return. Myself I went for the chemo after surgery. I want every defense I can get to help keep it from returning. Also on a unpleasant note but very important. Stay ahead of the constipation by taking softners or something. Pain meds can cause it big time. I had no idea that constipation could be so painful. I hope and pray the best for you whatever plan you may choose.

_________________
Dxed nslc stage2b,Aug.05 had right lung and 17 nodes removed which 2 had shown to be effected.August 27,05 had surgery redone again to stop bleeding. Started chemo sept.05 as a precaustioary. Have 3 month visit followups and have been ned so far and am hoping and praying to stay that way.Grade3 squamous cell type(T2,N1,Mo)tumor 10.5 cemtimeters,1 peribronchial node and 1 10R node involved

Thinking about you today...hoping things are looking up for you. Please post an update when you can.

Hugs,
K

I had my upper left lobe removed 9 years ago for stage 1B adeno. Pain was an issue for a time, but it did disappear eventually, and now all I feel is some numbness at the incision site.

I did have chemo. At the time, studies showed some benefit to having chemo after surgery to improve survivial. Now, that benefit is in doubt for my particulars but I still have no regrets. It was a few months, and I thought that would be a small sacrifice to increase the chance of a cure.

I also think that one of the keys to success is to access the best possible care available to you. MD Andersen has an excellent reputation, and, if you are close, and can get in, I would advise you go see what they have to say.

I hope you are feeling better now, and please let us know how you are doing.

Cindy

_________________
age 56
surgery 6/20/03, stage 1B, upper left lobectomy
started adjuvant chemo on 08/14/03
3 cycles--cisplatin/gemzar
finished chemo 11/6/03
now 9 years post-lobectomy, annual x-ray and follow-up with surgeon
follow-up with oncologist every year/bloodwork and clinical exam

2001 early stage breast cancer/surgery and radiation only, no chemo needed. Mammograms once a year,

Just passed 11 year mark for the breast cancer and 9 year mark for the lung

it's been a month since my lobectomy and the pain is getting better. I am sill not sure what the next stteps are. My followup visit with sugeon was somewhat of a letdown because i did not get any clear direction about what to do next. It is up to me if I want to see an oncologist. He said "it was probably a good idea" but that was as far as it went. my xray was amazing, as you really couldn't tell any prt of my lung was gone. He told me that if I had trouble I could come back to him, and I really didn"t need to go back to the pulm. dr. he also said not to worry about the dif. types of cancer - no big deal . . .so i hzve sn appt w/onc I met when I was first diagnosed in the hospital but that won't be until 6/21. i don't know if this nonchalant attitude is typical, or in order not to scare me or what, but it is driving me nuts. My sinus trouble has flred back up so my horrid hedeadaches are back and worse than ever. I still need to have sinus surgery but i am not sure if now is s good time to try to do that. I do not want anymore pain just yet. I really need a personal assistant to go through all of this for me and tell me what to do next . . . Haha! Iam having some trouble with balance, and my depth perception. Not too sure what that is but hoping it will go away when I totally quit taking the pain meds. I came home from the hsp. w/a case of A Fib. but tht seems to have cleared up. All in all it seems to be good news I guess.

_________________
2/29/12        Sinus CT Scan
3/07/12        Scheduled surgery for blocked front sinuses for 3/12/12. Went to hosp. for pre-op tests.
3/08/12        Chest xray showed something new. Had a Chest CT scan done right away.
3/09/12        Spot on upper left lobe of lung. Cancel sinus surgery & go to pulmonary dr. Need to get PET scan done.
3/13/12        Golf ball size mass in lung. Probably cancer. 2 spots but one is small and from an old injury (been there for 3 or so years).
3/19/12        PET Scan
3/20/12        PET scan shows cancer in both spots. Need biopsy & surgery to remove part of lung.
3/23/12        Needle biopsy through back. Lung collapsed. Admitted to hosp. (in 8 days) Stopped smoking (DUH)
3/27/12        Biopsy results, family conference. Malignant adenocarcinoma, NSCLC. Curable with surgery. Not sure about small spot - will know after surgery & path reports. 
4/03/12        Met w/thoracic surgeon. Need Pulmonary functon test. Not cardiologist though.
4/10/12        PFT & Lung Scans. Lobectomy surgery set for 4/23/12 w/Scheinin at Methodist.
4/20/12        Broke out in Shingles. Postpone surgery for a week.
4/30/12        Lobectomy - remove ULL. Methodist Hospital.
5/03/12        Atrial Fibulation common because of surgery. Heart monitor on. Having trouble w/pocket.
5/05/12        Home. Got path report - adenocarcinoma & squamous (small spot) both in ULL. Cancer free. Not in the lymph nodes. Staged at IB.
5/15/12        Follow-up w/Dr. Scheinin. Need oncologist for preventative care. Cancer is gone though. 
5/23/12        Birthday & Bella's kindergarten graduation. Having trouble walking, balance, moving. Brain & body not meshing at all. Pain meds? Epidural after effects? Not sure this cancer is really gone.
6/06/12        Go to PCP to do neuro check up. Failed miserably. Using cane to walk. Alien left arm syndrome
6/11/12        Brain MRI at So. Loop Imaging
6/12/12        Go to PCP for MRI results. Baseball size (6cm x 4cm) tumor in brain. Moves me to Stage IV. Need neurosurgeon. Life threatening.
6/13/12        Met Medical oncologist. Says need brain surgery.
6/15/12        Neurosurgeon. Can't do surgery until 6/27 because of privileges at MH Mem City.
6/18/12        2nd opinion neurosurgeon. Can do surgery on 6/20/12 at St. Joseph's. Losing movement each day.
6/20/12        Image Guided Craniotomy, bilateral. (Right posterior Parietal Occipital lobe)
6/24/12        Home from St. Joe. Can't be left alone. Therapists & nurses to come over. Need Radiation.
6/26/12        Met w/ radiation onc. dr. Need WBR w/Boosts. 
6/29/12        CT Scan at St. Joe because of bad headaches
7/02/12        Radiology Oncologist 2nd opinion. Said same thing as 1st but at MHNW.
7/06/12        Radiation simulation set-up.
7/09/12        PET Scan - No evidence of new tumors in rest of body.
7/10/12        Radiation begins. Stitches removed at Neurosurgeons. Left a piece of tumor in there. Too dangerous to take out? 10 treatments & 5 Boosts
7/27/12 Finished WBRT

DEFINATELY see an oncologist! Chemo will likely be recommended. I would do what they say! June 21 is not that far. I have found with both of my parents having different kinds of lung cancer that sometimes time is of the essence and other times not. After surgery if they think they got it all, they probably feel it is ok to wait a few weeks to see oncologist, that happened with my dad b/c it wasn't urgent. My mom was IIIA and had to start ASAP, so she was in immediately.
Most important thing is to be your own advocate

_________________
[size=84]Mom diagnosed 11/03; age 58; NSCLC IIIA
Carboplatin/Gemzar
3/4/04--lobectomy
5/04--completed radiation
5/05--coiling for brain anyerusm found on routine brain MRI
8/05--triple bypass
10/06--PET, brain MRI, CT clear
8/07--NED
Currently in remission/NED
2/12--Stage IV squamous cell, a new beast
4/9/12--My mom passed away

Dad diagnosed 9/06; age 65 (asymptomatic); adenocarcinoma with BAC features
9/06--Wedge resection of 1.4cm tumor
Lots of little nodules remain and a small thing on brain maybe
11/06--Stable
5/18/10--Dx with Macroglobenemia (indolent lymphoma) & nodule growth
6/10--IT'S BACK! Tarceva time
[/size]

Well, dear LC friends, I found out that I have had stroke. I don't know any details, but I think it happened as a result of the A-fib. I will have to get a brain MRI to see what is going on. You can't look at my face and see signs of stroke, but I am having a terrible time walking, getting dressed, and thinking. My brain is not communicating with my body very well, and I had thought it was from the pain meds, or after effects of anesthesia/epidural meds, but it is not getting better and I am not on that much medication. I had to go to my husbands primary care dr, who did some tests on me in the office. The damage is done, but it could be worse. It is frustrating, of course, and my husband is having to help me with so much. I haven't even gone to an onc. Dr yet and I am already a mess. So, I will let you know what happens next. Please pray for us.

Dani

_________________
2/29/12        Sinus CT Scan
3/07/12        Scheduled surgery for blocked front sinuses for 3/12/12. Went to hosp. for pre-op tests.
3/08/12        Chest xray showed something new. Had a Chest CT scan done right away.
3/09/12        Spot on upper left lobe of lung. Cancel sinus surgery & go to pulmonary dr. Need to get PET scan done.
3/13/12        Golf ball size mass in lung. Probably cancer. 2 spots but one is small and from an old injury (been there for 3 or so years).
3/19/12        PET Scan
3/20/12        PET scan shows cancer in both spots. Need biopsy & surgery to remove part of lung.
3/23/12        Needle biopsy through back. Lung collapsed. Admitted to hosp. (in 8 days) Stopped smoking (DUH)
3/27/12        Biopsy results, family conference. Malignant adenocarcinoma, NSCLC. Curable with surgery. Not sure about small spot - will know after surgery & path reports. 
4/03/12        Met w/thoracic surgeon. Need Pulmonary functon test. Not cardiologist though.
4/10/12        PFT & Lung Scans. Lobectomy surgery set for 4/23/12 w/Scheinin at Methodist.
4/20/12        Broke out in Shingles. Postpone surgery for a week.
4/30/12        Lobectomy - remove ULL. Methodist Hospital.
5/03/12        Atrial Fibulation common because of surgery. Heart monitor on. Having trouble w/pocket.
5/05/12        Home. Got path report - adenocarcinoma & squamous (small spot) both in ULL. Cancer free. Not in the lymph nodes. Staged at IB.
5/15/12        Follow-up w/Dr. Scheinin. Need oncologist for preventative care. Cancer is gone though. 
5/23/12        Birthday & Bella's kindergarten graduation. Having trouble walking, balance, moving. Brain & body not meshing at all. Pain meds? Epidural after effects? Not sure this cancer is really gone.
6/06/12        Go to PCP to do neuro check up. Failed miserably. Using cane to walk. Alien left arm syndrome
6/11/12        Brain MRI at So. Loop Imaging
6/12/12        Go to PCP for MRI results. Baseball size (6cm x 4cm) tumor in brain. Moves me to Stage IV. Need neurosurgeon. Life threatening.
6/13/12        Met Medical oncologist. Says need brain surgery.
6/15/12        Neurosurgeon. Can't do surgery until 6/27 because of privileges at MH Mem City.
6/18/12        2nd opinion neurosurgeon. Can do surgery on 6/20/12 at St. Joseph's. Losing movement each day.
6/20/12        Image Guided Craniotomy, bilateral. (Right posterior Parietal Occipital lobe)
6/24/12        Home from St. Joe. Can't be left alone. Therapists & nurses to come over. Need Radiation.
6/26/12        Met w/ radiation onc. dr. Need WBR w/Boosts. 
6/29/12        CT Scan at St. Joe because of bad headaches
7/02/12        Radiology Oncologist 2nd opinion. Said same thing as 1st but at MHNW.
7/06/12        Radiation simulation set-up.
7/09/12        PET Scan - No evidence of new tumors in rest of body.
7/10/12        Radiation begins. Stitches removed at Neurosurgeons. Left a piece of tumor in there. Too dangerous to take out? 10 treatments & 5 Boosts
7/27/12 Finished WBRT

Oh Dani, I am so sorry to hear this news. You have had more than your fair share of bad news. Hopefully it will only be good news from now on. You will be in my prayers.

_________________
Ginny
Please use gdecoursey@aol.com for email.

Earl born 1/28/42 - dx 9/21/02 - died 8/18/04. He was the sunshine of my life.

Oh my goodness Dani,

What a turn of events. Once you have dealt with the stroke and it's causes, please do insist on an Oncologist. Surgeons like to think they got it all. It's likely they did. But they are not cancer doctors. Unless you have complications from surgery, you don't need to go back to see him. Your Oncologist should take over your care.

Same with your pain. I actually have a doctor that is assigned to me strictly to manage my pain. He is part of a palliative care doctor team but I am not terminally ill or dying which is what palliative suggests. But he said that he job is to make sure that I live with good quality and it has nothing to do with terminally ill or not. Pain control is the most important factor in my healing.

My rib cage still feels like it was opened with a can opener. The cut nerves, the muscles, all of it is so intrusive to our bodies. Pain care can make an immense difference in how well we heal. Do not be afraid of taking narcotic pain medications. If you body is hurting, it needs it. When your body no longer needs it, it will become apparent to you and you'll be able to get off the meds. However, mypain situation is extreme. But my pain doc said that in order to heal I need to take these opiate meds. He said he doubted I'd become addicted, but that if I did, it would not be a serious addiction. He can tell by how many pills I am taking by how many refills I am asking for. But he is also an expert, so should I need to deal with that, they can help wean me off the so that it's not this horrible thing like what you see in the movies.

I ampraying for you Dani.

Judy in Michigan

_________________
6/07 DX NSCLC, Left Upper Lobe wedge resection: Stage 2.3/4, (2B?) Adenocarcinoma, measures 2.5x1.5x1.1cm. Involving visceral pleura but not through it. 5 rounds chemo, carboplatin and Taxol. Subsequent scans NED.

1/11 3.5 mm node found. 10/11 CT node now 8 mm, and new 6 mm node. 11/11 CT Pet shows slight uptake. 1/4/12 Biopsy - Pneumothorax complication. 1/14/12 Lobectomy of upper rt. lobe. NSCLC Adenocarcinoma in situ, nonmucinous (bronchioloalveolar carcinoma) 1.4cm involves pulmonary parenchyma.
3/14/12 Begin 4 cycles of Cisplatin/Navelbein, with Neulasta shot
4/6/12 Chemo changed to Carboplatin/Navelbine without Neulasta shot. Reduced chemo by 50% due to intolerance.
7/5/12 CT scan is clean, NED for lung cancer! There are issues with liver and stomach that will be investigated but not believed to be because of cancer. Wait and see!

*Avatar was taken 7/3/12 on our way out to see the Fireworks on a friends boat on their lake!

Mom dx SCLC 1/96, passed 10/19/96, age 62
Dad dx Brain cancer 4/87, passed 6/87, age 57
Sister dx Brain cancer 4/83, passed 12/83, age 25

I do have an appt with onc. On 6/21. also have appt w/ pulm. Dr on 6/12. Now I really can't afford to go to both of them, so in your opinion who is the most important at this point?

Thanks for the prayers. We sure need them!

Dani

_________________
2/29/12        Sinus CT Scan
3/07/12        Scheduled surgery for blocked front sinuses for 3/12/12. Went to hosp. for pre-op tests.
3/08/12        Chest xray showed something new. Had a Chest CT scan done right away.
3/09/12        Spot on upper left lobe of lung. Cancel sinus surgery & go to pulmonary dr. Need to get PET scan done.
3/13/12        Golf ball size mass in lung. Probably cancer. 2 spots but one is small and from an old injury (been there for 3 or so years).
3/19/12        PET Scan
3/20/12        PET scan shows cancer in both spots. Need biopsy & surgery to remove part of lung.
3/23/12        Needle biopsy through back. Lung collapsed. Admitted to hosp. (in 8 days) Stopped smoking (DUH)
3/27/12        Biopsy results, family conference. Malignant adenocarcinoma, NSCLC. Curable with surgery. Not sure about small spot - will know after surgery & path reports. 
4/03/12        Met w/thoracic surgeon. Need Pulmonary functon test. Not cardiologist though.
4/10/12        PFT & Lung Scans. Lobectomy surgery set for 4/23/12 w/Scheinin at Methodist.
4/20/12        Broke out in Shingles. Postpone surgery for a week.
4/30/12        Lobectomy - remove ULL. Methodist Hospital.
5/03/12        Atrial Fibulation common because of surgery. Heart monitor on. Having trouble w/pocket.
5/05/12        Home. Got path report - adenocarcinoma & squamous (small spot) both in ULL. Cancer free. Not in the lymph nodes. Staged at IB.
5/15/12        Follow-up w/Dr. Scheinin. Need oncologist for preventative care. Cancer is gone though. 
5/23/12        Birthday & Bella's kindergarten graduation. Having trouble walking, balance, moving. Brain & body not meshing at all. Pain meds? Epidural after effects? Not sure this cancer is really gone.
6/06/12        Go to PCP to do neuro check up. Failed miserably. Using cane to walk. Alien left arm syndrome
6/11/12        Brain MRI at So. Loop Imaging
6/12/12        Go to PCP for MRI results. Baseball size (6cm x 4cm) tumor in brain. Moves me to Stage IV. Need neurosurgeon. Life threatening.
6/13/12        Met Medical oncologist. Says need brain surgery.
6/15/12        Neurosurgeon. Can't do surgery until 6/27 because of privileges at MH Mem City.
6/18/12        2nd opinion neurosurgeon. Can do surgery on 6/20/12 at St. Joseph's. Losing movement each day.
6/20/12        Image Guided Craniotomy, bilateral. (Right posterior Parietal Occipital lobe)
6/24/12        Home from St. Joe. Can't be left alone. Therapists & nurses to come over. Need Radiation.
6/26/12        Met w/ radiation onc. dr. Need WBR w/Boosts. 
6/29/12        CT Scan at St. Joe because of bad headaches
7/02/12        Radiology Oncologist 2nd opinion. Said same thing as 1st but at MHNW.
7/06/12        Radiation simulation set-up.
7/09/12        PET Scan - No evidence of new tumors in rest of body.
7/10/12        Radiation begins. Stitches removed at Neurosurgeons. Left a piece of tumor in there. Too dangerous to take out? 10 treatments & 5 Boosts
7/27/12 Finished WBRT