Bob....update please

Hallmarkgard wrote:One thing that really pisses me off about Cancer is the constant 2nd guessing on the treatment path you are taking.  I am sure people are trying to be helpful, but many times they are not.  You have to do what you think is best and what is available to you.  As a care taker I already have enough enough guilt and stress trying plot a course of action.  It is all ways "Have you tired?  What if?  There is a place in (Blank) that can cure her"  Have you tried?  You should have went to,,,"  Very seldom do any of these well meaning people know the scope and full details of the issue that you are addressing.

Last April my wife was given 6 months to live.  In addition to her Liver Cancer she had a large tumour blocking her rectum.  By the grace of  God and the good doctors at Sacred Heart, her tumour is gone and today she will drive herself to visit her sister across town. She is progressing better than anyone had predicted.  Would she better better off if we had went somewhere else?  Who know?  I damn sure dont.

When your wife is lying a bed, very sick and barely clinging  to life, your options are limited.  You do what you have to do.  

Dont be too quick to dismiss all your local options as quackery...

I admire your care for your wife. You answer to no one as you both make the best decisions afforded to you at the time. So happy to hear she is progressing well. I hope she enjoys her outing today. Take care.

Sometimes local treatment is excellent. After getting a second opinion, most return to local treatment. However, to not acknowledge that there is a wide spectrum of care in our health care system which gives research and teaching centers a huge advantage in the treatment of cancer is avoidance of truth. I do not need a lecture to tell me about the suffering of cancer. I have seen people crying because they could not afford the medications necessary to buy more time, or to even breathe because our health care system is unfair. I have seen a man who was only four years older than me in quiet desperation asking how he could get another needed sandostatin shot because Medicare would not pay for the same and his hormone counts were going up......11k for a shot which nobody can afford without insurance, and are available in Canada for 3k. The reality is that the best care for cancer is at those leading cancer research centers and that Florida has one of the best in the nation in Tampa.

I also have seen the caretakers grouped around their loved ones on the infusion floor......month after month of pain and guilt, and entirely helpless to change the reality and so necessary for the quality of life of the stricken. You can get angry at me for your perception of me putting down local cancer care, but I proudly bragged about how good my local hospital did in removing my lung, and finding the cancer.......completely in the dark that their standard of care was killing me because they had not put me on sandostatin, and had not used the correct cat scan to find my cancer as I was bragging on what a great job they had done the tumors were pumping hormones and spreading like wildfire when a competent regional oncology team would have had me immediately on Sandostatin, and used an octreotide scan which would have caught my metastasis on my liver and allowed a resection of the same.....blind in my ignorance, and loyal to the good people who were helping me locally, I made a critical mistake of not getting a second opinion until it was almost too late. I would NEVER allow another to make my mistake without advising them to go to a regional center for a second opinion. I gave you the same advice, and despite that advice you have had excellent results locally in your wife's treatment. I am happy for both of you, but hell will freeze over before I change my advice to Bob to get a second opinion at a regional cancer center, where he probably will come back locally for most treatment, but depending on his pathology.....maybe not....maybe it is a matter of life or death, and they may be the difference.

Hallmarkgard wrote:One thing that really pisses me off about Cancer is the constant 2nd guessing on the treatment path you are taking.  I am sure people are trying to be helpful, but many times they are not.  You have to do what you think is best and what is available to you.  As a care taker I already have enough enough guilt and stress trying plot a course of action.  It is all ways "Have you tired?  What if?  There is a place in (Blank) that can cure her"  Have you tried?  You should have went to,,,"  Very seldom do any of these well meaning people know the scope and full details of the issue that you are addressing.

Last April my wife was given 6 months to live.  In addition to her Liver Cancer she had a large tumour blocking her rectum.  By the grace of  God and the good doctors at Sacred Heart, her tumour is gone and today she will drive herself to visit her sister across town. She is progressing better than anyone had predicted.  Would she better better off if we had went somewhere else?  Who know?  I damn sure dont.

When your wife is lying a bed, very sick and barely clinging  to lifye, your options are limited.  You do what you have to do.  

Dont be too quick to dismiss all your local options as quackery...

So glad your wife is doing better. When you first posted the prognosis seemed grim...your care and constant vigil by her side had a very profound affect.

We have a team of very good doctors in our area. And like everywhere else some not so great.

Again, still praying for your wife and you.

People need to get second opinions in cancer treatment. Period! If a person is in a position to get that second opinion at a leading research or teaching hospital, then get that second opinion at the best cancer centers in America. The fact remains that the vast majority of those stricken will continue to get MOST of the their care locally, but that second opinion is critical and may be the difference between life and death.

http://health.usnews.com/best-hospitals/rankings/cancer?page=2

There is not much difference in the top 25, but there is a huge difference between the local hospitals in a community and those top 25. Moffitt is top 25, and probably number one in many areas of cancer as it was in endocrine cancer. Please note you could go down five hundred hospitals and not see the local hospital I used to have my lung removed or find a hospital other than Andrews which would be top five hundred in the Pensacola area. The difference in cancer is huge. A second opinion is huge. Please Bob get that second opinion at a top 25 facility, they will probably confirm your local doc, but you need to completely exhaust your options.

Lets see how this works Say your wife doubles over in pain one afternoon while you are both working on a building project. You rush her to the emergency room and they start to find out what is the matter. 3 days later , you are meeting with her doctors in her hospital room. They inform you that she has stage 4 liver cancer and a large tumour in her rectum..She weak and in a lot of pain. The doctors want to do surgery to remove the tumour. So now you have sick wife with impending life threatening surgery. I guess now is when I should have said "Fuck you guys I am going down south for a 2nd opinion!!"

That was my exact lung situation as the pnuemonia and collapsed lung did not give me the time to get that second opinion, and the local folks operated. However, we are talking about what is best for Bob, not trying to rationalize your or my health decisions which were emergencies. Bob has a small metastasis in his lung which fortunately gives him time to get a second opinion, and to advise him to only use local medical input is flat out wrong and selfish to somehow justify something which is NOT relevant to Bob's care. He should immediately be making an appointment at a top 25 to map his course of treatment. If I had his time, I might have been able to beat this damn cancer, but instead they cut it out, did not use the proper sandostatin to treat it, and failed to even know what an octreotide scan was to discover the metastasis on my liver which in 2008 would have allowed a resection of my liver and my being cancer free today......the pulmonary doc just shook his head at the care I got at my local hospital who like you I praised until I realized their lack of knowledge had killed me.

No, it was their lack of knowledge.....I was the one after surgery who came to my pulmonary doc and asked if I had been given an Octreotide scan, and he answered.....what is that? He said the PET scan would pick up anything. He was wrong. I was right because I was reading. I went to competent folks who were at Moffitt and Northwestern, and they have been keeping me alive despite the lack of knowledge from the local folks. Bob needs a competent second opinion at a top 25, not an illusion that there is no difference in care.

This is where I'll be going.  I have friends in Galveston who I can stay with.
And it's affiliated with Sacred Heart (where my oncologist is now).

Hallmarkgard wrote:One thing that really pisses me off about Cancer is the constant 2nd guessing on the treatment path you are taking.  I am sure people are trying to be helpful, but many times they are not.  You have to do what you think is best and what is available to you.  As a care taker I already have enough enough guilt and stress trying plot a course of action.  It is all ways "Have you tired?  What if?  There is a place in (Blank) that can cure her"  Have you tried?  You should have went to,,,"  Very seldom do any of these well meaning people know the scope and full details of the issue that you are addressing.

Last April my wife was given 6 months to live.  In addition to her Liver Cancer she had a large tumour blocking her rectum.  By the grace of  God and the good doctors at Sacred Heart, her tumour is gone and today she will drive herself to visit her sister across town. She is progressing better than anyone had predicted.  Would she better better off if we had went somewhere else?  Who know?  I damn sure dont.

When your wife is lying a bed, very sick and barely clinging  to life, your options are limited.  You do what you have to do.  

Dont be too quick to dismiss all your local options as quackery...

I am glad your wife is getting better and you are absolutely right, like I have said before I know people who rave about the cancer doctor's at Sacred Heart and I can only think of one instance of a bad review. I believe they work more closely with MD Anderson in Houston than when they first became affiliated. Beside the two lung cancer clients that are in remission I also know a guy who was diagnosed with I believe it is AML the deadliest from of leukemia, after almost two years of treatment at SH he's been in remission a year and a half.

Home run Bob. It is rated top five year after year in the battle against cancer and to have a connection with your local oncologist is even better. My doctor at Moffitt had a personal connection to my oncologist at Northwestern, and they still share on my case. You have made the best choice and I am optimistic that those folks will leave no option off the table to allow you a path to beat the big C. Just do not go there during hurricane season, because we both know about darts and Galveston's history of not knowing when one was coming.

Bob wrote:This is where I'll be going.  I have friends in Galveston who I can stay with.
And it's affiliated with Sacred Heart (where my oncologist is now).

You're going for 2nd option? After biopsy here? Treatment?

ppaca wrote:
You're going for 2nd option? After biopsy here? Treatment?

Yes I'll get the biopsy here.  And then go there for further diagnosis and treatment.  At least that's my hope.

Bob, this is very important. When the biopsy is completed they will do pathology locally. My local hospital after my bronc biopsy told me three days later that I was cancer free, however, my pulmonary doc to his credit had not seen NET tumors but twice before mine, sent biopsy slides to Mayo clinic immediately. Five days later my phone lit up and everybody was telling me I had to immediately go into surgery because I had a rare cancer which we now know as the cancer which killed Steve Jobs and my pathology indicated that it was particularly aggressive. If I had not had the slides sent to Mayo, I would have been even further screwed. Make arrangements prior to the biopsy to have the slides sent to the Anderson folks you will be seeing and allow their pathologist to make a determination in conjunction with the local folks. It is common to send these slides digitally for pathology analysis by the best.

I'm going to make sure everything is sent to Anderson.
I would have gone to Anderson for the biopsy but didn't want to delay it.

http://pix11.com/2016/02/06/medical-procedure-accidentally-performed-on-wrong-baby/

My tongue is still all screwed up since surgery. I feel like the entire surface has been burned or some type of acid was spilled on it. Everything I eat now taste bitter. The bitter tastebuds are located at the back of your tongue in the middle, and I figure that my taste will return eventually, but everything tastes like crap. Do not worry about operating on the wrong person. They gave me a marker. The doctor took the marker and made a mark on my throat. It seemed silly, but they have a series of fail safes which guarantee they are operating on the right person. They still chipped my tooth on my first biopsy of the lung using a flex bronc, and this time whatever they used on the tumors must have partially spilled on my tongue......oh well......if everything taste bitter maybe I will eat less.

What is the medical term for the type of lung tumor you have,  seaoat?

Bob, received your email. How far is that appt from your house? I can stop by about 12.45 tomorrow maybe even a little earlier. I want to go over a few things with you.

I'd try to get as many physical copies (paper, cd, zip digital) as possible... you might be surprised how screwed up simple things can become. I actually worked at md anderson during college as an iv tech. It was awesome then. Best of luck Bob.

No commentary but only GOOD LUCK!!!!

Nueroendicrine Tumor or NET for short. The specific medical term for my tumor is aptypical carcinoid tumor. A carcinoid tumor and NET tumors may be non cancerous and benign. You may find that the tumor you have is NOT cancerous. It was no fun to be told by local pathology that you were cancer free and then three days later they are calling you four or five times to schedule immediate surgery because you have "atypical" which is the aggressive cancerous strain which they did not recognize locally. I pray your tumor will NOT be small cell lung cancer. Early detection can beat small cell, but it is the nasty of lung cancers. Mine is the slow but certain of lung cancers......people can live seven or eight years with mine.

When I did the surgery, I was told my five year survival rate on a resection of the lung was 90% if it was not atypical, and 69% if it was atypical. If it had been small cell it would be 25%. I have now lived over 7 years and believe that the numbers and stats are dynamic because my treatment of two monthly sando shots has changed the survival rates. I think I can make it to Christmas, so do not freak out with the C word and lungs. It is very encouraging they caught it so small, and that you are going to the best cancer center in the region. Retired Leo had small cell lung cancer.....he had a tough battle. I lost my Grandfather to small cell lung cancer, and my receptionist just two years ago who worried about me every day, all the while she had cancer in her lungs.....when they found it she had a two inch tumor, she was dead a year later. You are in a great position to win your battle.

Bob, best of luck at your appointment with the surgeon tomorrow. Saying prayers and wishing you the very best news. Looking forward to seeing you soon