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Who do we turn to from here? Is Mayo the best?

looking4hope
Posts: 2
Joined: Dec 2009

Hello All,

We are on a roller coaster ride and I am hoping to figure out what to do next. My father in law is currently (just today) diagnosed with stage 4 lung cancer though the diagnosis started at stage 3A four months ago, then went to stage 2. Bottom line is he is on a roller coaster ride and all I can do is wonder where we can find "the" best Dr and treatment. I have always felt the Mayo clinic in Minnesota was the "top"? Has anyone been there for lung cancer and what was your experience?

A bit about our story- 4 months ago he went in to his regular Dr becuase he started coughing up blood. He was a smoker for 50 years so of course was concerned. His Dr referred him to another local Dr in his area. That Dr did tests and determined he did have a mass, it was cancer, and also noticed a mass in a nearby node in the same lung. He Becuase of the spread, he said my father in law was not a candidate for surgery and that chemo and radiation should be started.

My hubby decided to get a second opinion. He found the top Dr at the University of Chicago cancer clinic and scheduled a visit, then further testing. This Dr found that the secondary mass the 1st Dr found was in fact not cancer- only scar tissue. They did formal testing on this.

This news from this new Dr felt like such a blessing. The diagnosis was now only stage 2 and he SHOULD be a candidate for surgery- the cancer was only one main mass in one lung, NO WHERE else. The Dr wanted two rounds of chemo done to shrink the cancer, then would re-evaluate for surgey- chances should be very good after the chemo that we could get the cancer removed.

So, he went through the chemo (not an easy feat in itself considering he had a minor stoke during chemo treatment) and just today, they went down to get the test results from the Dr expecting good news (that the cancer had shrunk) and hoping he would approve surgery.

Instead, they found out the cancer in fact did not shrink AT ALL and in fact, is now in various distant areas i.e. various nodes, adrenal glands, etc- and the Dr now wants to see if it's in his brain becuase that may have been what caused the stoke.

He is now told he's at stage 4!! How could he go from stage 2 to stage 4?? Has this happened to others? It is usual for a Dr to misdiagnose by THIS much?

This news today was worse then the news we got of him having cancer in the first place. Only all of you can imagine the tears and heartache we've experienced today.

On top of it, my husband now feels it's all his fault becuase he's stalled the 1st Dr's plan to do chemo/radiation- and by doing so the cancer has spread. He says this mistake will remain with him for the rest of his life- my husband is only 32 years old- that's a large burden for him to be placing on himself. Of course I did my very best to pull him out of this but I can't stand that all of this is happening and there's only so much you can do to make someone feel better.

I just wonder who to trust. Who to go to. This is probably the million dollar question all of you are asking but... I have heard Mayo clinic is the elite and will take the most aggressive approach at this point? Can anyone comment? Has anyone been there for lung cancer? Or should we just go back to the 1st Dr?

Thank you all so much in advance for anything you can offer. I have been reading through a lot of stories on here and feel for all of you so SO much.

Menaff
Posts: 9
Joined: Dec 2009

I will try to tell you the best I can about this place. Our nightmare started on Oct. 18th. And we were on the same roller coaster ride and was getting concerned with the time frame of tests, results, and Dr.s visits. My family had used Mayo Clinic for nearly a decade with my Dad. Anyway, my children decided that we should take my husband to Mayo. We called and made the appointment for us with-in a week. We drove up, saw Dr.s, went from dept. to dept. Our first appointment was on a Thursday (11/06) our results were all back and read to us on the following Tuesday. My husband started a 5 day radiation treatment plan. Starting on that next Thursday (1st wk.) We started driving home on the next Wednesday afternoon after the last radiation treatment. We just had our second chemo treatment here at home today. By all means go to Mayo. Rochester Inn is a small motel that the shuttle will pick you up and drop you off and costs you nothing. Very nice young couple there trying to make a living. We were there two weeks!!!!! We would probably just be getting around to treatment plans here had we not drove 600 miles to find out about our loved one. This is harder than I could ever have imagined. My husband is in the same shape as your father-in-law. If his mass shrinks he could possibly be a candidate for something called 'nano knife' procedure. You can find out more about that at Baptist Hospital in Little Rock, Arkansas. Dr. David Hayes. If you want more about that let me know. It is a procedure for inoperable patients.
Good luck to your family.

looking4hope
Posts: 2
Joined: Dec 2009

Just wanted to say thank you SO much for this responce, it gives us a lot of hope and it looks like we will be going to Mayo. I wish you and your family all of the best, looking forward to hearing how it goes for your husband!

mercey
Posts: 33
Joined: Dec 2009

I was diagnosed with stage 3 inoperable lung cancer in April 2008.Was told no hope and I am still here and cancer free.Did they do a PET scan on your father-in-law from the start to see if it had spread? Tell your husband not to blame himself.It took drs 14 months to even figure out I had lung cancer before I started treatments.Of course by that time they said it was in the lynph nodes, two spots on the brain and too close to the trachea to operate.I have a great faith ih miracles and I did believe God for a miracle.Which wasn't always easy when drs. are telling you there is no hope.I just closed my ears to that part..did my treatments and read healing Bible scripture..listened to scripture on Cd's.and I am one year tested ,cancer free.I made a committement to the Lord to share my story so others may know miracles still happen.God has the last Word.Much luck and prayers to you.I stayed local but did go to Duke University to see the top lung cancer surgeon there.He still said surgery was not possible but I was in remission.. I always wondered about those cancer center treatment of America hospitals advertized on T.V. I called them before my clean PET scan to look into them but never needed to go and prayerfully hope I never will. Don't give up... it is a nightmare but not impossible..

catcon49's picture
catcon49
Posts: 388
Joined: Aug 2008

I believe MD Anderson is the best, although it is in TEXAS. I called #2 Sloan Kettering Memorial, they couldn't even fit me in for an appointment. They told me to call University of Pennsylvania or Fox Chase Cancer Hospital. I choose University of Pennsylvania. They are about 2 hrs away. I loved my surgeon, even though she is relatively young. She still has everything approved by the Chief Surgeon. My surgery went just as she said. The difference in the local surgeon (in a small town) said he had been doing VATS surgery (small incision under breast and arm as opposed to cutting from the wing to under arm, recovery is alot easier with VATS) for about a year and a half. The surgeon at Penn said she does them everyday. I fortunately was stage 1a with no mets. no cancer for 1 1/2 years now. Hopefully the ugly monster will not rear its head again. I hope you and your family stay strong keep praying and fighting. Second guessing yourself doesn't do any good. If you are not satisfied with your drs. get a second opinion quickly. I hope this helps somewhat. Also I typed in top cancer hospitals in usa and thats where I got an idea of who to call.

staying strong
Posts: 4
Joined: Dec 2009

Looking4hope,

I'm so sorry to hear about your father-in-law. My dad was diagnosed with stage IV lung cancer with mets to bone right before Thanksgiving this past year. He is 10 days out of radiation rx that lasted 5 days. He will start chemo either next week or the week after. We were told the same thing-once it spread it is no longer operable. Chemo and radition were our only choices.

My whole family is fotunate enough to live near Rochester Mn. I know from many experiences with my family (my children included) Mayo is one of the best. My dad has received excellent care from all his dr.s from pulmonary to medical oncology and radiation oncology. They have so many resources for cancer pts. Its incredible. You would receive some of the best care in the world.

Stay hopefull and continue to pray. I pray everyday for a miracle and continue to have hope and faith that God will heal!

Best wishes to you wherever you decide to seek care.

Staying strong

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