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Sheer frustration

Karen12345
Posts: 2
Joined: Dec 2009

Sheer frustration!!!!! My father was diagnosed with Squamous Cell Carcinoma of the esophagus over 2 months ago. And we have still gotten nowhere. The following events have taken 2 and a half months.

After they confirmed the cancer in the esophagus, they set a date for a pet scan. The oncologist said this was needed to stage the cancer. The initial pet scan lit up in the lung. The oncologist then informed us that they have to figure out which was the primary source so the oncologist set an appointment with a pulmonologist. The pulmonologist then set an appointment for a bronchoscope biopsy. The results from the mass in the lung was NOT cancer. The pulmonologist had it double checked. After these results, we went back to the oncologist, again does not know what to do. Because they do not know what is wrong with the lung, he cannot do radiation or chemotherapy. They are worried that it could be an infection and it could kill him if he had a compromised immune system from chemotherapy/radiation. We are now over 2 weeks from the results bronchoscope biopsy and still have not staged the cancer or have any plan on treatment. They are discussing surgery but we cannot meet with the thoracic surgeon until the end of next week.

I feel like we are back where we began. I am just so frustrated and know I am just venting. But I kind of feel like we are getting jerked around. I always thought time is not your friend when it comes to cancer. Any thoughts/suggestions would be IMMENSLY appreciated.

Betty in Vegas's picture
Betty in Vegas
Posts: 311
Joined: Jul 2009

I believe Sloan Kettering is one, I think that the Univ of Colorado is one, and I know MD Anderson is one. This way, you have a TEAM of docs working on you and they work together and more quickly.

I cannot believe you have not yet received staging. It is so ridiculous how long this stuff takes. Time is certainly not your friend--you need to get him into treatment.

I would insist on movement or I would move docs ...preferably to a major medical center.

This is pretty crazy. Wow. I am sorry you are going through this.

Betty

Karen12345
Posts: 2
Joined: Dec 2009

Not sure if I am posting this or not.... Never done a discussion board before so I may screw this up. If so, sorry.... :-(

Thanks for understanding.

My father lives in Louisiana. M D Anderson is about 4hrs away from my parent’s home and John Hopkins’s is about 40 minutes away from me. Either would be perfect, we have no problems moving my father up here if need be. But from my research it may be difficult to get in/ get accepted to see someone at either center. I really don't know how to start the process to get into a Unified Center. Do we have to go by doctor's referral? Any idea how long it would take to get an appointment if we can get the process started on Monday.

I am just so scared because from what the doctor's have told us so far it is not in the lymph nodes but that may not be the case next week or next month. I feel like we are giving up without intending to because of doctor's latency! We wanted to start it immediately after being diagnosed.

Betty in Vegas's picture
Betty in Vegas
Posts: 311
Joined: Jul 2009

We self referred to md anderson... simply got on the website and filled out a form. We were there within 1.5 weeks. May take a bit longer these days, but once there, within 4 days we had seen our surgeon, oncologist, radiologist and started chemo AND had all our tests done.

If he is in LA MD Anderson is a good place, and you can also do the same for Johns Hopkins I am sure!

I agree, this is why WE went to TX ...we were getting no help here.

MAE66
Posts: 70
Joined: Nov 2009

I don't blame you for being fustrated. My husband was diagnosed as an inpatient. We found out on a Wed. and he started chemo. on Fri., two days later. The nurses told us that by being in the hospital everything moved so much faster because they had everything and everyone right there. Going to an all-in-one center may be the same way.

Susan

mumphy's picture
mumphy
Posts: 486
Joined: Jun 2009

Hi,

First of all I would find another pulmonologist. They have to be able to grow cultures and
find out what it is in the lung, if its mets, bacterial or even fungus and mold. These tests
should only take a matter of days to grow. Its just like having a throat culture done or even
blood cultures it's not that darn hard to diagnosis these things they must have part of the tissue left from the other test.

Ask around go on line, you have 2 great hospitals close to you with less then a 5 hour drive.

A second opinion never hurts!!! It can only help!

Hope this helps,

God Bless,
Kathy

Tina Blondek's picture
Tina Blondek
Posts: 1561
Joined: Nov 2009

Hi and Welcome
You have every right to vent and be frustrated!! Yes you are starting all over again, and in this journey of ec cancer, you will find that you do that quite often. You will feel that you are doing the drs. job sometimes. Do your research. GET A SECOND OPINION. and get it fast. Go to a special cancer center that has a team of ongologists. Keep us posted, and best of luck. Prayers are being sent to you and your husband.
Tina

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